Breast Cancer Before 45

Vicki: I was diagnosed with breast cancer just after my 40th birthday.

Jessica: I was diagnosed at the age of 32.

Epiphany: ... which I was in my 30s.

Toni: I was 34 years old. I had four young children.

Elena: I was diagnosed with metastatic breast cancer on my 38th birthday.

Jessica: It came as a shock. I was a new mom.

Vicki: By all measurable accounts I was very healthy.

Elena: Juggling work, motherhood, and this diagnosis is very difficult.

Epiphany: I got everything: chemotherapy, radiation, multiple surgeries, more chemo, and then of course I'm on tamoxifen.

Toni: There was definitely a grief that I was losing some of the maybe best years of my life.

Elena: You hear the most awful things from people who don't really understand what you're going through.

Epiphany: When you're younger, you have either a budding career or a younger family.

Toni: It really affects your sexuality at a time when you're still young. I was in my 30s and facing perimenopause and a devastating surgery to my body and the way that I saw myself.

Vicki: You're going to see a lot of specialists, you're going to have a lot of doctor's appointments, but make sure you specifically ask to see a fertility specialist.

Elena: It's so important to understand how much knowledge is power, and as busy as you can be and as tired and fatigued as you are, learn as much as you can about what you're going through.

Epiphany: Treatment has also come a long way.

Jessica: I think at first I thought my life was going to stop. Well sometimes it does feel that way, but we have the ability to keep going, and I think that's something that's really beautiful in a way about being young, going through this diagnosis, is that we still have a lot of life to live.

Elena: I know that it's very awkward being the young one in the treatment room, and it's not a pleasant feeling and it's hurtful sometimes when you hear the bell ring and you know that it's not you. But know that you're not alone and that we have a wonderful team of support here at Breastcancer.org and other organizations that you could look into.

Vicki: Whether it's just one person or an entire community, open up, be vulnerable, lean on others because they really do want to help, even if they don't know exactly how to do it.

Jessica: And don't give up on yourself because you are you and you're not just a cancer patient. All the struggles that you're going to be faced with right now are going to make you a better, stronger person.

Dr. Weiss: Hello everyone. I'm Dr. Marisa Weiss. First, I want to thank the amazing women in that video for sharing their experiences and perspectives as young patients and survivors. And to all of you, I'm so grateful that you've taken the time to be here today for our webinar Breast Cancer Before 45. Being diagnosed with breast cancer at any age is overwhelming, but there are definitely unique features about being diagnosed at a young age that affects you uniquely. By researching, learning about, sharing, discussing these issues, we can improve the care and quality of life of younger patients with this disease. The conversations we're going to have today will answer questions about why more young people are being diagnosed, what that experience is like, and how to find the lifeline of support patients and caregivers need to get through it all. But before we begin, I want to thank our generous sponsors, Novartis, Lilly, and Pfizer, for making this event possible.

Our program today brings together experts on the front lines, innovating, researching, advocating, and driving real change. I'll be talking with Dr. Jasmine McDonald and Dr. Megan Tesch about their research. Then Athena Jones will interview author, artist and breast cancer survivor Haley Gullen, followed by a conversation about connection and support with Allie Brumel, Brooks Fuentes, Melissa Jenkins and Mackenzie McGrath. Last but not least, Jeanelle Adams and Dani Trops will be explaining how they use social media to provide breast cancer information, foster community, and eliminate stigmas.

Before we dive in, I want to answer a question that we got on social media a few weeks ago about why we'd focus just on young people for a special content series in this webinar. First, we want to call attention to an alarming rise in young adults getting breast cancer. According to the American Cancer Society, there's a 1 in 47 risk of women developing invasive breast cancer before age 50, and from 2012 to 2021, those 10 years, the rate of new diagnoses before age 50 increased by 1.4% per year. Second, there are distinct challenges after a diagnosis in someone's twenties, thirties and forties, which we'll talk about throughout the program. Most young people are not getting regularly screened for breast cancer because early detection guidelines typically recommend mammograms starting at age 40 or maybe even later. And often young women are not taken seriously when they report symptoms to their doctors or some think, "I'm just too young to get cancer." So they put off making the appointment or they're just too busy to make it all happen.

This may lead to a delayed diagnosis and possibly more advanced disease at the time of diagnosis. Between building a career, navigating fertility decisions, growing a family, dating, parenting, young, all these are so very hard and doing any one of those things with cancer can feel impossible at times. There are the physical and emotional challenges like going into early menopause, drastic body changes and hair loss and side effects that linger long after treatment. All of these side effects of these decisions that you make to get to a healthier place, it's a price we pay.

A diagnosis can disrupt a pivotal time in your life in terms of your education or your career, and can also cause financial strain for people trying to grow their income and pay off loans like car loans, student loans. The isolation can be suffocating. Even within breast cancer spaces like waiting rooms and support groups, many people that are older and are in a different phase of their lives, it can also feel like friends and peers are going through the world and their lives seemingly carefree or they simply can't relate to life with breast cancer. This is all while coping with the impact of a serious illness.

Today's webinar is part of a special series that our Breastcancer.org editors have been working on for more than a year. It all started with a survey to understand how young people are experiencing breast cancer and where the healthcare system is doing well or falling short. For example, we asked, "At the time of diagnosis, were you considering having children in the future?" For the people who answered yes or said they were undecided, actively trying to conceive or were pregnant at the time, it's important that they received expert guidance on how breast cancer treatments affects their fertility. And when you combine it all, that's 38% of the survey respondents. Yet we heard from a portion of the respondents that they didn't have adequate care.

When asked if a healthcare provider discussed fertility services and fertility preservation options before treatment, nearly half, who answered, said either it was only discussed briefly after the patient brought it up, or no, it wasn't mentioned. And of course, we know that upon a diagnosis, especially at a young age, there's so much going on all at the same time. Even if the conversation happened, it's so hard to hear it, understand it, and focus on it and take action on it when there's so many other big decisions you have to make. And while care is improving, we need to do better for people who want to have children after breast cancer. And this is just one window into the unique choices and challenges for someone diagnosed at a young age.

Today, we want you to know you are not alone. Our goal is to share knowledge, resources, and strategies for moving forward with strength and hope. Now it's my pleasure to welcome Dr. Jasmine McDonald and Dr. Megan Tesch. Dr. McDonald is an associate professor of epidemiology at Columbia University. Her research explores the underlying causes of breast cancer in young people and possibilities for lowering risk. Dr. McDonald also focuses on increasing diverse representation in cancer research. Dr. Tesch specializes in breast cancer at the Dana-Farber Cancer Institute. Her research focuses on the care, treatment and outcomes for young adults with breast cancer. Dr. Tesch Is also an instructor in medicine at Harvard Medical School. I want to give a shout-out to everyone in the audience who submitted a question. We'll try to answer as many as possible today. Dr. Tesch, let me start with you. Younger people with breast cancer may not have the benefit of early detection. What is most common as far as subtype and stage for younger people?

Dr. Tesch: Yeah, that's a great question. So as you sort of alluded to earlier, the guidelines, fortunately in spring 2024 they lowered the initial age of mammography screening to 40 years old, where previously it was 50. And that's been supported by the fact that we are seeing rising rates of breast cancer and we know the benefits of early detection, but I still see plenty of people who are diagnosed with breast cancer who are less than 40 years of age and they're not yet eligible for routine screening. And as you might expect, their breast cancers are often found once they discover a lump or they have another symptom that they bring to medical attention.

And so studies have shown, and sort of confirmed this, that younger patients are more likely to present at an advanced stage in part because of these diagnostic delays and the lack of screening. And then sort of unrelated to that, and perhaps more due to differences in the underlying biology of young onset breast cancer is that young patients tend to present with more aggressive subtypes of breast cancer as well. So these are things like HER2-positive breast cancer, triple-negative breast cancer, and luminal B type breast cancers.

Dr. Weiss: And luminal B, can you just explain that to the audience?

Dr. Tesch: Yeah, luminal B is a type of hormone receptor-positive breast cancer, but it tends to be characterized by having a higher grade and being a little bit more rapidly growing and having some other high-risk features associated with it.

Dr. Weiss: Right, right. Thank you. Dr. McDonald, Black women are more likely than white women to be diagnosed young, under 40. What do we know right now about disparities in diagnosis and outcomes?

Dr. McDonald: Well, thank you so much for that question. It's a grim knowledge that we know for early-onset breast cancer or young adult breast cancer, Black women have the highest rate of being diagnosed and the highest rate of dying. So when Black women are diagnosed with early-onset breast cancer, fewer are diagnosed with localized staged breast cancer, which has better outcomes, and more Black women are diagnosed, as Dr. Tesch was mentioning, the most aggressive breast cancer subtype, triple-negative breast cancer. Unfortunately, the story is no better with outcomes as Black women have a 40% higher breast cancer mortality rate compared to white women, but a mortality rate more than twice that of Asian, Asian Pacific Islander women.

Dr. Weiss: And when you say mortality rate, you mean the risk of dying from breast cancer is for 40% -- 

Dr. McDonald: Yes, the risk of dying of breast cancer is much higher for Black women.

Dr. Weiss: Right, totally unacceptable of course. And as a follow-up, Dr. McDonald, why is diversity in clinical trials so important to reducing these disparities?

Dr. McDonald: Well, first and foremost, I would say that treatment is very important when we're considering early-onset breast cancer. And so with that, how do we define what treatment is going to happen? Well, that's where cancer clinical trials comes in. Cancer clinical trials are like our gold standard in science and often what physicians stake their breast cancer treatment plans off of. Moreover, with the emergence of scientific advancements and technology, we've created a more precise medicine or precision medicine as now we have the addition of genetic information. However, when we think about our cancer clinical trials, only about 10% of participants in clinical trials are of Black or Hispanic heritage, while non-Hispanic, American Indian and Alaskan Native are seeing a 2% increase in being diagnosed with early-onset breast cancer every year since 2001. They're less than 1% of clinical trial participants. So when we're thinking about young adult breast cancer increasing, it's really increasing across all races and all ethnicities. Therefore, we really need to make sure that what we're basing our gold standard care on, that we actually have more groups represented it. That way we can ensure treatments are optimal and effective for everyone.

Dr. Weiss: Absolutely. And I've worked a lot with Dr. Nadine Barrett, who has the program that was rolled out through American Society of Clinical Oncology called Just Ask because women of color are less likely to be asked to participate in a clinical trial. And as you said, that's the way that you can get access to the most promising new treatments. It doesn't mean it's last resort kind of thing, or that your Guinea pig is... Clinical trials are conducted in a way that is supposed to be ethical, where you give your consent freely and that it gives you a chance to participate in a study that give you access to the latest treatments and also help those other women who are behind you who, as you say, we need to know more about how each type of person is affected by the treatment, if it works in everybody or not.

Dr. McDonald: Correct. And we all know that there is evidence where certain treatments and certain drugs work differently across genetic background. So it's just really important that we have that representation in our clinical trials.

Dr. Weiss: Absolutely, absolutely. And in terms of the clinical trials, I conducted a clinical trial and made sure that we made the appointments convenient to those people who were interested in learning more about the study, that the consent forms were easier to understand and people got copies of them, and that the research team looks like the people were trying to engage in studies so people feel connected and feel like a greater sense of trust. And no one should ever be rushed to learn about a trial. Although when you are looking at treatment options, most people think, "I got to get started on this as soon as possible." But generally, you do have time to learn about what you need to do in order to get the best care possible. And getting the best care can be the participation in a clinical trial.

I was going to ask actually, both of you in general, what you think is causing this rise in adult breast cancer and to touch on some of the issues of earlier start of menstruation, delayed childbirth, not having kids at all, some of the lifestyle issues of carrying around extra weight, more alcohol use, smoking, physical inactivity, eating too much like fast food and fried foods, inadequate sleep and exposure to things in the environment that are not healthy for you. In your professional experience and knowledge, how would you help us understand why we're seeing this rise in breast cancer in young women?

Dr. Tesch: I can start, I think I would agree that some of those trends in the reproductive risk factors, like you said, earlier age at first period, delayed childbearing, more people not having children, it could explain some of the rise in young adult breast cancer, particularly because there have been a few studies that have shown that it's primarily the rates of estrogen receptor-positive breast cancer that are rising more so than estrogen receptor-negative. And so what all those sort of reproductive risk factors have in common is that they increase your duration of estrogen exposure, which can be a driver for estrogen receptor-positive breast cancer. So that certainly could be playing into it to some degree. It probably doesn't explain the whole picture. I don't know if you have anything to add dr. McDonald?

Dr. McDonald: I agree. I think it plays a role, and I think that it's actually multifactorial, meaning that there's probably many contributions to this rise. But I do want to encourage the fact that reproductive risk factors are not the end-all that's the reason we're seeing this increased rise. And I give the example from the Ghana Breast Health study where they were looking at women that were of childbearing age and these women had three risk-reducing reproductive risk factors. They had children at earlier ages, they were multiparas, meaning they had multiple births and they breastfed. Yet there has been a rise in early-onset breast cancer and a diagnosis of more aggressive disease among Ghanaian women. So this suggests that these reproductive behaviors that we're seeing do not necessarily explain what we are observing.

So to this end, I'm more aligned with how our genes and our environment interact. Environmental exposures are something that you can imagine disturbing not only your hormonal system, but also having cancer-causing properties. This could be endocrine disruptor chemicals, pesticides, plastics, et cetera. But what's most important is that these are exposures that can happen across your life. That means that since it's happening across your life, there's opportunities to impact the way your genes are read or how your proteins behave.

Dr. Weiss: Right.

Dr. Tesch: That's a really good point. I'd also just sort of add, a lot of people question the rising rates of obesity and physical activity and unhealthy diet, but I still see plenty of young adults who are extremely active, super healthy, eating really well, and they still get diagnosed with breast cancer. So I completely agree with what you said, Dr. McDonald, that it is likely something multifactorial, as you say.

Dr. Weiss: Absolutely. And just to add one more thing, which is important to know, and that is that even though more breast cancers in young women may be related to an inherited genetic abnormality that you may have, it still doesn't explain why it's more common, because those genes have been around for a long... They're ancient, they've been around forever. And it doesn't explain why more women who are young are getting it at an earlier age. Although as you're saying Dr. McDonald, there is this whole interaction between the outside environment and your inside environment and how that affects how your cells are operating and functioning during their life and the things that keep them healthy and the things that can contribute to cells growing in an uncontrolled way. Dr. Tesch. For someone diagnosed with breast cancer while pregnant, although relatively rare, how did they get the best coordinated care from both their oncologist and OB-GYN?

Dr. Tesch: Yeah, it's a great question, and it is rare to get breast cancer during pregnancy, but we do see it. Some stats have said it's as high as 1 in 3000 pregnancies, which is not uncommon. And I think the challenging thing is that the treatment is very complex because you're sort of balancing the potential benefit of any therapy to the mother, and you have to balance that against the risk to the fetus. So I think just the most important thing to get the best coordinated care is that the oncologist and the OB-GYN really need to work together when you're making any sort of treatment decision. They have to be in communication. They should be doing that already, but definitely if the patient needs to put them in touch or what have you. And these are truly what I would say are multidisciplinary cases. It's not just the oncologist and OB-GYN who need to be involved, but usually we need to have maternal fetal medicine, social work, nutrition, breast surgery, radiation oncology.

I think ideally these patients are referred to a larger center where they can access all these specialists and there is more experience managing breast cancer during pregnancy if that is possible. And I guess I'll just add as well that if management is appropriate, the outcome still can be good. When you are diagnosed with breast cancer during pregnancy, the studies have shown that the prognosis of pregnant versus non-pregnant patients is actually very similar if you control for other tumor characteristics and treatment. And also that the early developmental outcomes for children who are exposed to breast cancer treatments like certain chemos that we have some good safety data are okay during pregnancy. Those outcomes for those children appear comparable as well to the general population.

Dr. Weiss: Right, right. For sure, you need really great communication between members of your team and your team and you, so that as you make your way through this jungle of decisions and treatments in the journey that you have, that you feel like you're getting what you need at each step along the way because there are a lot of twists and turns in the path that you're looking at. So good communication if you're at a tertiary, at a fancy center with all those resources available in the same place, or if you're sort of patching it together in the community that you live in. Regardless, you need to have expertise in each area and have everyone communicate with each other so that you're not the one who's sort of trying to get this person on the phone and this person on the phone and them to talk to each other when you're struggling to manage your health during pregnancy as well as a patient for breast cancer.

Dr. Tesch: Exactly.

Dr. Weiss: Dr. McDonald, we also want to better understand the nature of breast cancer that occurs just having had a baby. What does the research show about why new moms might be at elevated risk for developing a more aggressive type of breast cancer?

Dr. McDonald: Well, I want to thank Dr. Tesch for sharing the outcomes of being diagnosed during pregnancy because the outcomes are pretty good. However, when you're diagnosed in the postpartum window, it is not the same story. So I study a form of breast cancer known as postpartum breast cancer. So women who have their first child age 25 or older, they'll carry a significant increased risk of breast cancer. It'll peak within the first five years postpartum, but the risk could last 10 years or more. What you were saying, Dr. Weiss, about genetics, even women who carry an increased risk of breast cancer due to cancer family history or genetic factors, they too will see this peak increased risk. These cancers are usually more aggressive and harder to treat. So why is this the case? Why is there this increased risk of breast cancer after pregnancy?

Well, the postpartum window is ripe with features that are cancer causing. So within the breast, postpartum there's a lot going on. And as we're thinking about it, there's inflammation, there's cell growth, there's the ability for cells to migrate from where they are. It's so complicated and so complex, but it's an environment that if there is a rogue cell that is within your breast tissue, it is a great environment for that cell to possibly undergo promotion and cancer progression. So that is why it's really important that after pregnancy, you are mindful of your breast and any changes, you can even ask for a breast exam at your annual OB-GYN because as Dr. Tesch said, there are women coming in with cancer that are under the age of screening. So just be mindful of this risk window as I think it's not communicated as clearly.

Dr. Weiss: Right. And even with that window of elevated risk, it's not a reason not to have a baby or to have a second baby, but you want to go ahead and plan your family, but you want to be mindful of your body, what's going on, how to take care of it, and just be aware the risk is there and you need to be followed carefully for that over time.

Dr. McDonald: Right, and it's all about knowledge, right? Knowledge is power. So knowing this and knowing your breast and enjoying being a mom.

Dr. Weiss: Right, right. Absolutely. Dr. Tesch, where people want to have children after cancer, what does someone need to know about preserving fertility before or during treatment?

Dr. Tesch: Yeah, that's a great question. So important. So if a young patient is considering having children after cancer, they should ideally be referred to a fertility specialist before treatment. I tell my patients, "If you're even remotely considering having children, just go meet with a reproductive endocrinologist, get more information about your options." And what are those options? So the most effective, the ones that we have the best evidence for, are egg and embryo cryopreservation, but the reproductive endocrinologist and or your oncologist, they can also discuss other sorts of adjunctive options. Things like getting ovarian function suppression treatment during your chemo to protect the ovaries is just so important that the conversation is had and some of that data that you shared earlier about only sort of 50% who had actually good conversation about fertility before their treatment. Sometimes patients have expressed to me that they're concerned about delaying their treatment. But I always emphasize that our modern protocols for fertility preservation, they don't have to wait for a certain time in their menstrual cycle to start. And in general there's almost never a reason that we can't postpone the treatment a week or two for something as important as preserving fertility. We don't think that's going to impact their overall breast cancer outcomes, it just keeps all the doors open.

We also have plenty of data from studies like the POSITIVE study that show that fertility preservation is safe in patients with breast cancer, and so it doesn't increase their risk for recurrence, so that shouldn't be a deterrent either for patients. And as I said, the ideal time to preserve fertility before treatment starts when there is no sort of exposure to chemo or anything yet in the ovaries. But if for some reason doesn't work out that way, do not hesitate to explore your fertility preservation options, treatments like IVF after breast cancer as well, because we have safety data for that.

Dr. Weiss: Right, right. And Breastcancer.org is very proud to have been very involved in doing the POSITIVE study to make sure that patients knew, people knew that that study was available to participate in. Do you want to tell us about that study now? Because it's so important, we need to get to it and really have people understand what that study attempted to do, what it showed, and how we use it now in clinical practice to help people make these big decisions.

Dr. Tesch: The POSITIVE study, what they were looking at is whether we could interrupt endocrine therapy for patients with hormone receptor positive breast cancer for a period of up to two years to allow those patients to try to get pregnant, deliver and breastfeed. And then they would, once that two year period is over, go back and finish the remainder of their endocrine therapy. And this was something so valuable, because usually it's like, okay, we have to think about a five-year course of endocrine therapy before we can even think about starting our families. But this sort of allowed patients to do anywhere from 18 to 30 months and then take that break. And the updated data was just presented last week actually. So, we have even a little bit longer follow up showing that it does appear safe to take that break and then complete the remainder of the endocrine therapy thereafter. That's just been so helpful and has just given patients so much hope that they don't have to put their life on hold for such a long period of time before they can start their families, even after breast cancer.

Dr. Weiss: And when you talk to people after they've had their, let's say they've had a successful pregnancy, and I know some people even use fertility intervention while they were trying to get pregnant during that window, that two-year window, how do you have the conversation about going back on the hormonal therapy, the endocrine therapy to finish out the five years or longer, whatever it was indicated, and how often does that actually happen?

Dr. Tesch: Well, that's the goal. And the idea is you get back on after two years. In real life, does that always happen? Maybe not, right? And even in the study it didn't always happen that people were able to get on right after that two-year mark, and that's just real life. But the goal is that you would go back on and you finish the remaining five years after you've taken that break to attempt pregnancy.

Dr. Weiss: Right, right, right. And Dr. Tesch, we received a lot of questions about going into early menopause due to treatment and questions about sexual health and intimacy, especially during dealing with vaginal dryness, pain during intercourse or any type of sexual activity, could just, any type could be uncomfortable and low sexual desire. And what do you recommend someone do to get the physical and emotional help managing these symptoms of menopause?

Dr. Tesch: Yeah, I mean, yeah, it can be so difficult. And it's not uncommon because of treatments that patients receive, like chemotherapy, or treatments that they're receiving, like ovarian functions, depression therapy that is shutting down the ovaries. All these things can induce temporary or permanent menopause, and then that can lead to sexual dysfunction issues. I think the first and most important step is just talk to your oncologist about it. I mean, I try to bring it up as an oncologist just to normalize it, but not every patient maybe has that experience, so they might have to be the one who has to ask about it. And don't be embarrassed about that though, because it is such a common issue. These are common side effects and we do have ways that we can manage them. For example, like vaginal dryness, we have lots of non-hormonal treatments, vaginal moisturizers, pelvic floor PT, and we even have data now supporting the safety of low-dose vaginal estrogen for vaginal dryness in breast cancer survivors. So, that's even become an option and it's a game changer when patients are started on that.

Pain during sex. That could be a vaginal dryness issue, or you may need more comprehensive support from a gynecologist who can talk to you about things like dilators and other measures that might be needed. For low sexual desire I'll usually refer these patients to a sexual health clinic for individual or couples counseling. And some of these clinics are even starting to prescribe medications to treat hypoactive sexual desire, so just all of that to say that there is definitely help out there. It's just very important that you have that conversation with your medical team so they can help you get the help that you need.

Dr. Weiss: Dr. Tesch, what do young adults need to know about having a survivorship care plan and monitoring for possible ongoing longer-term residual side effects, and even serious ones like the way treatment affects your heart, or the bones with osteoporosis, or being monitored carefully in case there's another cancer diagnosis in the future? How do you monitor be followed carefully to keep you as safe as possible?

Dr. Tesch: Yeah, I think a survivorship care plan is really important. With my patients I'll usually ... We'll actually make an actual plan that they can print out and have on hand. That's the ideal. And this is not usually going to be the first thing that you do with you and your oncologist. This is going to come usually after you've had your surgery, after you've had radiation, once you're well-established on your treatment, that's when the transition to survivorship really begins. And that's when it can be good to lay out a plan about, "What kind of imaging do I need to screen for new or recurrent breast cancer? Is mammography enough? Do I also need MRI screening? How often are my visits going to be? What symptoms do I need to watch for and bring to attention? What lifestyle modifications are recommended to reduce my breast cancer recurrence? What can I be doing there to optimize my health?"

Dr. Weiss: And making sure that all patients have the benefit of genetic testing, inherited genetic testing to guide that whole process as well.

Dr. Tesch: Exactly. If they haven't already had genetic testing that this should be arranged and they should be able to meet with somebody and talk about that. And then as you said, your team, you should discuss how to monitor for long-term side effects. Are you at risk for cardiovascular disease due to the treatments you received? And if so, do you need, for example, an echocardiogram at some point in the future just to follow that? Are you at risk for bone thinning due to the treatments that you're receiving? Do you need to be getting bone density monitoring? What other cancer screening beyond breast cancer do you need to be thinking about. Other things like Pap tests and skin exams. Do you need to be getting those testing? And then if you have genetic testing and it is revealed you have some sort of hereditary cancer predisposition to either breast or other cancers. And there might even be more enhanced screening to think about, like breast MRI or earlier colonoscopies, ovarian cancer risk reduction, pancreatic cancer screening. So, all of that is very important as part of that survivorship discussion.

Dr. Weiss: Yeah, absolutely. Really genetic testing to really be done earlier in the process, so that can help you make the decisions about treatment, as well as later on its impact on how to follow you over time. Dr. McDonald, I was going to ask you if there's anything you'd like to share about recent research results or ongoing studies that give you hope for better understanding breast cancer in young women. I know you yourself are a researcher, so what are you most excited about?

Dr. McDonald: Well, I'm excited that there's growing awareness around this topic, because that creates more energy and more focus funding for this. So, I have a funded study where I'm examining young adult breast cancer and looking at the tumor environment. I'm examining cancer causing features and trying to find biomarkers to provide greater insight into the biology of young onset breast cancer. And hopefully with that information I can aid in informing better treatment options. There's also the Breast Cancer Family Registry that I'm a part of. It's an international cohort that has recently been funded to enroll women who are under the age of 45, a group that is under age 45 and has no breast cancer, and a group that has early onset breast cancer. I think this cohort is very pivotal to our current day, as they are a current day cohort where we'll be able to look at current day environmental exposures. And we're also recruiting across diverse races and ethnicity to ensure that our results can be applied broadly, so stay tuned.

Dr. Weiss: Well, that's excellent. Your research is so critical. Overcoming these, the health disparities and making sure each person gets access to the best care possible is foundational to the work at Breastcancer.org and the work you're doing in your own institution. It's so critically important. What's fascinating, in the 30 years that I've been in practice, increasingly we understand that each person is so unique and has her own ... The extent and nature of the cancer and her situation is unique to her personal circumstances, her style of making decisions, her philosophy, what she can afford, what's accessible to her, all that is so unique to her.

So, effectively each person has a rare disease and breast cancer being the most common cancer ends up being that it's the biggest collection of rare diseases. And it's our job as people who have the honor of taking care of people with breast cancer to really help each person get the best care possible and to really meet them where they are. And we've heard from so many people about needing mental health support, and I'd love to ask you each for some final words of encouragement for anyone going through breast cancer who's struggling right now. Dr. McDonald, you want to go first?

Dr. McDonald: Well, I just want to say, community is very important. Find your people, find your community. Don't go through it alone.

Dr. Weiss: Absolutely. That's a really great advice. And Dr. Tesch, what would be your final words of encouragement?

Dr. Tesch: Yeah, I guess we see you. We know this is hard, that your breast cancer experience is very different from many others' experiences, because you are dealing with unique challenges like busy careers and young children that you're parenting, worrying about your future fertility. These all can take a toll on your mental health, and know that that is normal. Talk to your medical team at PODA. There are supports available, they can help connect you. Lean on your friends and family. And then as Dr. McDonald said, you may feel like you're alone, but there actually are many out there who are going through what you're going through. And just the many young people attending this webinar today is just the perfect example that there is community out there,

Dr. Weiss: Right, right. And they've been the inspiration to us at Breastcancer.org to conduct this survey. Because we're celebrating our 25th year now, and it's been many young women who've taught us along the way what's really happening for them and how we can do better and what they need, which is shaping the future of care. And being able to work with all of you and the other incredible members of this webinar is very exciting, because it is hopeful to think that we can help each person live longer and better. Better for longer, especially those women who are young at diagnosis who have their whole life in front of them.

So, thank you so much. Thank you so much. Dr. McDonald and Dr. Tesch. We're so grateful to you for your expertise and your empathy and your commitment and your innovation and really pushing the cutting edge and making us be smarter about how to do a better job and take care of people in better, more impactful ways. So, now-

Dr. McDonald: Thank you.

Dr. Weiss: Thank you. Now I'm thrilled to welcome Athena Jones. Athena is a journalist, two-time breast cancer survivor, and a filmmaker. She's currently working on a documentary called Sisters Keepers exploring why Black women in America have the highest death rates from breast cancer and ways that all women can better understand their individual risk. Athena, we're so glad to have you back with us for today's webinar, and now I'm going to hand it off to you.

Athena Jones: Wonderful. Thank you so much, Dr. Weiss, and hi everybody. It's wonderful to be here with doctors and advocates helping to get the word out about this issue. As someone who was diagnosed with breast cancer twice in my 30s, I can relate to having my life interrupted and the grief and the sense of discombobulation that comes with it can be really difficult to explain. That's why I'm excited to talk with our next guest, Hayley Gullen. In 2023, Hayley turned to cartooning to capture and share the realities of life with breast cancer after she was diagnosed at age 37. Her first book, This Might Surprise You: A Breast Cancer Story, was published last month. Hi Haley. Thank you for joining us, and congratulations on your book.

Hayley Gullen: Hi, thank you so much. Can you hear me all right?

Athena Jones: Certainly can. Thank you.

Hayley Gullen: Brilliant.

Athena Jones: We'll dive right in. Tell us a little bit about your breast cancer diagnosis and how cartooning has helped you to process the physical and the emotional challenges you've gone through.

Hayley Gullen: Yeah, sure. I was diagnosed in 2022. I was 37. I found a lump in my breast. I went to the GP. I thought, "Oh, it won't be anything. I'm too young for cancer." It was something, thank goodness I went. And my cartoons arose out of this sense that I really wanted to express myself, because cancer treatment is so dehumanizing. I went from being a wife, a mother, a professional. All of a sudden I had this unwelcome identity of cancer patient forced upon me. And I really, really, I found that so dehumanizing, so I was just looking for a way to express myself, to make the doctors and nurses see me as a full human being, because they're obviously very busy. They've got lots of patients to get through, which I could be sympathetic to. But at the same time I still felt this sense of frustration.

And a lot of people have said to me, "Oh, it must have been really cathartic to express yourself in this way." And actually, it wasn't necessarily, because I had to revisit some of these really traumatic experiences to tell my story. And I think there's a difference between art therapy, which is beneficial to the person creating the art, and what I was trying to do, which is tell a story that isn't just helpful to me, but is helpful to anyone who's reading it and going through something similar. Do you want me to talk a bit about these panels that are up on the screen right now?

Athena Jones: Sure. And I know you're going to share some other examples, but go ahead and talk about this first one, yes.

Hayley Gullen: Yeah, so this is just a few panels early on, I'd recently been diagnosed. And a nurse had said to me, "Oh, avoid sugar feeds cancer." Which is not true, as I'm sure you will know, but this is quite worrying that a health professional was telling me this. And you can see, I think the great thing about the cartoon format is that it takes you step by step through all the confusing things that happened, the small things that go wrong and then build and build. And you can see my thought process and then I go into a spiral of like, "Oh, maybe it was my fault. Maybe I ate too much, maybe I drank too much." And I just think cartoons are uniquely effective at telling a story in that particular way.

Athena Jones: Absolutely. It really is relatable. And there's a little humor, even though it's not a funny topic, and I think it's kind of good sometimes to bring humor to this discussion. And your drawings are honest, they hit on taboo topics, like some of the insensitive things people have said to you during the course of your treatment, and probably after. What kinds of reactions have you received from friends and family to these cartoons?

Hayley Gullen: I mean, I was very lucky. The vast majority of my friends and family were really kind and were absolutely there for me, although I think, because they didn't really, you can't know what it's like unless you're actually going through it yourself. And so some of their attempts to reach out were a little bit clumsy. So, someone who I care dearly about bought me books, which were the facts about breast cancer, here's a guide. And I was like, "I've got enough information, I don't want any, please stop." And actually, I think if this person had actually asked me what I wanted, I might have said, "Oh, there's this novel I'd like to read. Could you buy this from me? Or maybe get me a gift voucher, then I can choose something myself."

I think sometimes people are just like, they try and imagine what they might want in that situation, and firstly, they can't possibly know until they've been through it. I couldn't cope with the idea that I might go into early menopause. That was something I had to process later. And it's just so much to deal with when you're going through cancer. It's like you need to take things at your own pace and you need your family and friends to respect that and try and respond to what you need in the moment. And I had to offer them grace and be patient with them as well, because they were trying their best. So, I had to try and try and be compassionate back to them when they took a bit of time to catch up with me.

Athena Jones: Understandable. I'm sure a lot of us can relate to that as well. We'd love to see a few more of your favorite cartoons from your new book and have you explain, walk us through them, explain what they mean to you.

Hayley GulleAnyone who's been through chemo probably experienced some of the really uncomfortable, unpleasant physical sensations. And one that I had, I just had so much mouth pain and it was really, it's really grim. I remember describing it like my mouth is stuffed full of cotton wool, which is doused in petrol, and then it's on fire, and it was horrendous. There's some kind of dark humor there, so I was quite pleased with this panel, because I was thinking of the QA oil fires when you see the big plumes of smoke in the desert. And I was like, "Well, what if that was in my mouth? And there were reporters reporting on it?" And it's like, you can see it's horrendous, but I've sort of got a bit of a sense of humor about it. But I think that sort of geopolitical context helps to emphasize just how extreme those symptoms felt at the time as well.

Athena Jones: Great. And there's another one, I believe a person under a tree.

Hayley Gullen: It's under a wave actually.

Athena Jones: Under a wave, sorry.

Hayley Gullen: That's alright. I'm sure many people will relate to this. You're diagnosed with cancer, you're in sort of coping mode, you're just sort of trying to get through the next thing, then the next thing and any of the sort of trauma, you don't have time to deal with the trauma. And it kind of built up behind me until I realized I had all these feelings, difficult feelings I'd been pushing down just to get through and I hadn't dealt with them. I drew this as a tidal wave that was starting to overshadow me. And you could see it's about to crash down on me if I don't do something about it. And that was the point at which I realized I needed to go and get some therapy and process all the feelings that I hadn't dealt with.

Athena Jones: It's really great how you can communicate so much with just one image and a few words. We always say, "A picture is worth a thousand words," but then you add a few more words and you communicate so much more, which I think is really cool. For Breastcancer.org's special series on being diagnosed young, they had community members send in their stories, and you took a few of those responses and gave them life with cartoons. Can you share why this quote resonated and how you decided what visuals to use to go with it? I know we have another example.

Hayley Gullen: Yeah, absolutely. This was so fun to do. I really, really enjoyed drawing these. And this quote, "So, take the damn nap. You don't win bonus points in Cancerland for staying awake." It just really resonated, because with the sort of sense of guilt that I had when I was diagnosed. So, my daughter was three at the time. I was the main carer for her, but I couldn't do as much of that. And my husband, who was working full time, he had to look after me, look after her, do his job, do all the housework, everything. And he did it, because he loved us, and I would have done the same for him, but I think I felt just incredibly guilty about being that burden. And obviously, it wasn't my fault and I had to allow myself to allow him to help me. And so, I think this quote makes that same kind of point. It's like, let other people in, it's okay to crash out and have that nap you need. So, I think it's very relatable.

Athena Jones: I think so too. Very relatable how important it's to be able to rely on loved ones and community when going through something like this. And so, I think a lot of us can relate to a lot of what you've written, or drawn and written, and talk to about, and I can't wait to see the rest of the cartoon. So thank you, Haley.

Hayley Gullen: Thank you so much.

Athena Jones: And everybody, we'll be sending a link to the other cartoons inspired by the Breastcancer.org community member stories. And you can find Haley on Instagram, @hayleygullen, and we will be emailing a link to her new book, This Might Surprise You: A Breast Cancer Story. Now for our powerhouse panel we'll bring in Allie Brumel, chief operating officer and co-founder of The Breasties, Brooks Fuentes, community support program associate for Young Survival Coalition, Melissa Jenkins, community director for Breastcancer.org, and Mackenzie McGrath, vice president of programs for First Descents. I will start by saying, let's hear from each of you with a brief rundown of the services or programs your organization has available for young people who've been diagnosed with breast cancer.

Allie Brumel: I'll go first. Thank you. Thanks Athena, and thanks for having me here. I'm so grateful to be part of this conversation on behalf of The Breasties. The Breasties is a nonprofit community and we provide free programs and resources for anyone impacted by both breast and gynecologic cancers. And we have a real focus on that community building piece and connection. And we really try to reimagine and modernize what support looks like for the cancer community through accessible and engaging events, resources that are grounded in the real lived patient experience, and advocacy work to improve the experiences of those in the cancer community at large. And this includes, we have a multitude of programs. We have weekly virtual events. We have a free app where members can connect with one another facing similar experiences. And of course, our flagship event, Camp Breastie.

And we also provide educational content focused on high-risk prevention, survivorship, wellness, helping people feel supported and informed every step of the way. But yeah, overall our community is just here to support you through the entirety of your cancer experience. We're for both previvors survivors, thrivers and caregivers, and whatever your cancer experience looks like, starting at that high-risk place, caregiving, active treatment, navigating surgeries, survivorship, a stage four diagnosis, et cetera. So, so many different ways to get involved in our programs.

Athena Jones: Wonderful. Thanks, Allie. And I know from firsthand experience having gone to Camp Breastie for the first time this year, it's a wonderful community, and so important to have finally found it. Brooks, do you want to jump in?

Brooks Fuentes: Sure. Thank you so much for having me on this panel. I've already learned so much. That's what I love about each of these events. You always get a really piece of amazing, amazing information. My name is Brooks Fuentes, and I'm the program associate for community support at YSC. And I'm also a young breast cancer survivor. And YSC serves young adults in our community affected by breast cancer at age 40, but we do not card at the door. That's what we always say, so we have a lot of people in their 50s, and even young survivors that were diagnosed maybe 10, 15 years ago, and they come and join in our community.

And so, we provide psychosocial support in a lot of different ways. We have over 130 face-to-face community local groups across the country. We also have online communities like our virtual hangouts. We have over 10 virtual hangouts for different affinity groups, and those meet monthly or quarterly. We also provide one-on-one matching through a partnership with ABCD. We also have a lot of learning resources online. It's the largest collection of materials specifically for young breast cancer online database, and that includes our downloadable navigators. I want to do a shout-out to those people who are newly diagnosed right now. We have a great newly diagnosed navigator, but we also have a metastatic navigator and a survivorship navigator. And we also have educational content and a lot of survivor stories. We're always accepting more.

And then we also host two major annual events, our summit program. We have a summit in the fall, which is focusing on wellness, more kind of mindfulness-based, yoga, et cetera. And then our big summit, which is every march or usually in the springtime, but it'll be this coming march. And that is more educational. And we cover everything from medical updates to wellness, life after diagnosis. We have a lot of affinity groups coming together. So, it really is all about that community aspect. And we also do periodic other pop-ups, like we're introducing cancer coaching and also pop-ups about mental health, et cetera.

Athena Jones: It's so great to hear these long lists of resources and sources of information. It just goes to show everyone listening that if you have a question, there's a lot of support out there to get answers and to find the people you need to lean on. Let's see. Melissa Jenkins, community director for Breastcancer.org. Are you ready to jump in?

Melissa Jenkins: Sure, anytime. Thank you. Thanks for introducing me. I've been with Breastcancer.org for 25 years as a community director, so I've seen the growth of our organization and our community really since its inception, so it's been exciting. But as we've been discussing, when someone young gets a breast cancer diagnosis they land in a world that feels built for their mom's generation. And that's exactly why Breastcancer.org exists. We're for everyone at every age, but we know young people face their own specific challenges, so we have huge amounts of medically reviewed information of all different formats on treatment, fertility, side effects, living with metastatic disease, the things that you actually really need to know. And then there's our community. Our discussion boards light up at 2 A.M. when you can't sleep and someone needs to talk to someone who gets it. We also offer weekly support groups that are professionally facilitated spaces where you can see faces your own age and you can hear your own fears spoken out loud and realize you're not the only one who's figuring this out. And that includes also a group specifically for young people with metastatic breast cancer.

And we also see many young caregivers at our caregiver groups as well, plus our support navigators. We have a team of navigators who are actual humans who help you make sense of the overwhelm, finding resources, understanding options, or just helping people know where to start. And we do webinars like today and also smaller virtual sessions on things like managing your anxieties or fertility options. And bottom line, we're all here. We don't need to do this alone. And there's so much community and information there to support you and help you continue to build the life you want.

Athena Jones: It's such an important part of the message. You don't have to do this alone and people can help you know where to start and even what questions to ask your doctor at each appointment. McKinsey McGrath from First Descents, tell us about that organization.

Mackenzie McGrath: Hi, Athena. Thanks for having me. Hi, everybody. I came to this work almost eight years ago as a caregiver to my brother who is diagnosed with cancer as a young adult. And at FD, our mission is to provide life-changing outdoor adventures for young adults. So ages 18 to 45 is what we consider young adults, also known as AYAs who have been impacted by cancer and other serious health conditions. So we are really supporting individuals going through cancer, pre-vivors, during treatment, post-treatment, cancer-free, all at various stages of your journey as well as caregivers, which I think is very, very important to make sure we're taking care of our caregivers as well.

And we have really three program pillars. And our kind of core program is our free, week-long outdoor adventure program where it's really centered around getting people outside. We take folks surfing, kayaking, rock climbing. And what we are doing through that is really introducing a legitimate outdoor challenge in a very introductory, safe, non-judgmental manner in some of the most beautiful places in the world with your peers. And all of our programs have professional guides and group leaders and professional chefs. And what we're really trying to create is a space where participants can come and just be present with others that really understand what they're going through and connect with them. And we know that when people come together that are going through a similar life diagnosis like cancer, that magic really happens.

Athena Jones: It really does. Yeah, go ahead.

Mackenzie McGrath: Oh, sorry. Sorry, Athena. And our second pillar is community adventures. So those are locally led outdoor adventures that we offer nationwide, and we're really trying to create a continuum of care and community so everybody can continue to connect with their peers wherever they live on their own terms and turf. And these are very low cost or generally free meetups. And we reach more than a thousand members of our community nationwide. And I think this year we're going to be having meetups in over 30 cities across the country. So really broad reach, especially for those who might not be ready for a week long experience. And then just the last thing that we do, the third pillar is just our living it lifestyle, which what we mean by that is living life to the fullest, pushing our own personal boundaries, finding self-compassion and strength and community through the outdoors, through nature. And what we really do is provide science backed supportive lifestyle resources like yoga, mindfulness, and nutrition support that folks can use at any point in time in their healing journey.

Athena Jones: I think it's really cool how all of you have touched on offering resources that help people feel less alone. And I think what's so cool about the outdoors is that we know that being in nature is good for the soul, it's good for calming stress. So it's a cool combination. In a moment, I'm going to have some questions for each of you individually, but I still want all of you to answer this next one. We'll start with you and go backwards, Mackenzie. And that is when it comes to specific challenges or specific fears, what are the top issues for young people that you're addressing through your work? And explain a little bit about why that's your focus.

Mackenzie McGrath: Yeah. Well, a lot of the women here have already touched on it that we know that being hit with a cancer diagnosis in the prime of your life when your friends are getting married or starting a family or starting their career is absolutely devastating, and most of your peers are kind of moving on with life. And so really what we are focused on at First Descents is creating that community connection, knowing that when we bring people together who are going through a common life experience that is profound, and that many young adults don't know others going through that similar experience. So we're really about the community component and offering it in a natural outdoor setting. And we know through our work and years of doing research too, that a lot of young adults are going through feelings of alienation, isolation, anxiety, psychological distress, and even loss of sense of confidence in their bodies and in their selves, and not necessarily knowing if they can trust their bodies. So that's a lot of what we are trying to address through our programs and have researched over the years and have done so effectively.

Athena Jones: Wonderful. Melissa?

Melissa Jenkins: Honestly, it's isolation. As you said, it's the thread that runs through almost everything that young people tell us. When you're diagnosed young life around you just keeps moving. People are advancing careers, family planning, everything, but you're just in a completely different reality. And sometimes friends pull away, not because they don't care, but because they don't know what to say or how to help because you're in such a different reality and this creates this gap that's hard to bridge. And for people with metastatic disease, all this becomes even more complex. And that's why connection's really at the heart of everything we do through our content, our community programs. When you talk to somebody who truly understands, who's really been there, who speaks your language, it just changes everything. You stop feeling so alone, and you can get practical advice and wisdom and find hope again. Our job is to create those spaces both through our information we provide and the connections we build, where people don't have to explain or translate their experiences. They can just show up, be real, and know that they're understood.

Athena Jones: Come as they are, really.

Melissa Jenkins: As they are, where they are.

Athena Jones: Find that support.

Melissa Jenkins: What they need and share really those things that are specific to being young.

Athena Jones: Right. How about you Brooks, the Young Survival Coalition? What are the issues that people bring to your organization?

Brooks Fuentes: Oh, I definitely am on board with everything everyone has said because community is medicine, and I am a testament to that. Actually, my first program that I did for myself after I was diagnosed was a First Descents program. I kayaked down the Rogue River in Oregon. Loved it, found so many best friends there. So then I went on Breastcancer.org, I started going on the message boards, then I went to Camp Breastie and found a bunch of Breasties, and then now I'm here at Young Survival Coalition, forming those connections in our community. It is just so amazing how you see somebody who just diagnosed coming in and feeling deflated and scared, and then they find a connection with someone and it is amazing how their demeanor changes and they get more involved and they start posting on social media or coming to our events and it's just really, really lovely to see that.

So again, community is 100% what we do. We recently did a global comprehensive global survey similar to the Breastcancer.org survey, kind of a similar survey looking at what young survivors and young thrivers, what issues they're really concerned about. So it's called Project 528, and there were nearly 40,000 responses globally from 67 countries. And one of the big, big things was psychological distress, but then about 75% had concerns about fertility. And then 60% of people in countries with universal healthcare were still concerned about their finances. But then in developing countries it was about 90%. So one topic that I see every day I do one-on-one navigation is financial support. That is something that is trending upwards, and I am sure everybody on this call is actually looking for more support around that. We really do understand the financial toxicity of breast cancer in young adults. So yeah.

Athena Jones: Even with coverage, the part you're responsible for can still feel like a lot to be dealing with. Allie, how about the Breasties?

Allie Brumel: Yeah, echoing so much that has been shared here, community is just so important, and although at the Breasties we serve people of all ages, we don't have an age limit, the reality is a lot of our community is in that early young adult before 45 demographic. And the reality is that when you're diagnosed at this age or navigating a high risk at this age, the challenges are unique and you're in a different stage of life and you deserve support that's catered to what you're facing. And whether that's navigating careers or relationships or fertility or parenthood, we try to focus a lot of what we do, that emotional support, that peer connection and resources around that. Mental health support, practical resources to help young people feel less isolated and more empowered in what they're going through. This includes some of our weekly virtual meetups on sex and intimacy and those types of conversations.

Or we have a really amazing program in partnership with Bobbie, an Infant formula company that supports parents to feed their babies when they're impacted by cancer or at Camp Breastie. We have panels and workshops on different topics that are specific to the younger demographic like career pivots or dating or managing treatment in the workplace and fertility and navigating grief and the loss of fertility or loss of friendships, like we talked about those complex relationships when going through treatment. And so through all of those programs, I think the main focus is that community piece, but also helping young people to know that they have options, how to advocate for themselves to get that care and support they deserve and how to find community to help them through it.

Athena Jones: And following up on Camp Breastie, when I went, I was stunned at how many hundreds of younger women because back when I was going through it in my thirties, the two diagnoses, I was like, I'm definitely the only one. I was certainly the only person I knew. So it was really something to be surrounded by so many women who could relate to what I'd gone through. So even though Camp Breastie is inclusive of all ages, of course, we're talking here about breast cancer under 45. This event attracts tons, as I said, of young people who have or have had breast cancer. What do you think it means to them to come together in that way?

Allie Brumel: Yeah, no, I couldn't agree more. It's funny, I was diagnosed when I was 28 and I would go to the cancer center and I felt like an anomaly. I was like, I'm the only 28-year-old going through this. And now I know that's just far from true. We can see in this webinar, it's far from true. And yeah, Camp Breastie is such a special event. For those who don't know, it's the Breasties' annual four day summit where last year we had 600 people impacted by both breast and gynecologic cancer come together for community, advocacy and education. And it's a Thursday to Sunday event overnight, and we rent out a summer camp and we like to think of it as a retreat meets a medical conference because it's a safe, welcoming space where you're surrounded by people who understand you and you can do things like yoga and art activities and go paddleboarding on the lake and join a dance class.

But then you can also attend panels and get really important, groundbreaking information from experts and researchers and medical professionals. And also patients are uplifted to be seen as experts as well. And we just found that oftentimes, research is presented at these traditional medical conferences and it can feel really inaccessible and the information is dense and it's hard to access, and you feel like you can't be there if you're not a medical professional. And it's so much medical jargon and it's just hard. It's hard. And so Camp Breastie really removes that barrier and presents knowledge in a way that's truly understandable, relatable, and immediately useful. We have Breastie's leave who saying in our post camp survey, Breastie changed their life and changed their course of treatment. They were sitting next to a Breastie at lunch who was in a clinical trial that they then could go back to their medical team and ask about.

And I know there's just so much power in that. And Camp Breastie, we like to really pamper Breastie's with fun photo moments and retreat-like experiences and amazing gift bags and fun merch because we saw there's so many amazing celebrity and influencer events and thought, why doesn't the cancer community get this? If anyone deserves it, it's this community. And so yeah, it's just a really special time for people to be with others who understand what it's like to face breast cancer at a young age or be impacted by breast or gynecologic cancer and talk through those fears, frustrations, uncertainties, and yeah, people leave camp with unbelievable friendships and mentorship and just this sense of belonging. That's really hard to find. And we've seen that this extends far beyond the weekend and people just feel empowered to go back to their normal lives and make informed decisions about their health care, etc. So yeah, it's a really special event if you haven't seen it, and like everybody's doing here, I'm just really proud that we're all creating community in these ways.

Athena Jones: Yes, all creating community. And I think you end up creating a community of people who are healing through advocacy. Those relationships that continue, they end up, you end up joining folks to go and demonstrating for metastatic cancer research, for instance. And I think it's a really beautiful thing. Melissa, as someone who leads breastcancer.org support groups for young people with early stage and metastatic breast cancer, why is it so important for patients and survivors to find their community and to sometimes have groups specifically for one stage or the other?

Melissa Jenkins: I've been leading the community, as I've mentioned, for 25 years, and we started with the discussion forums where we were just amazed at the connections that were formed. And sometimes people met out of the discussion forums to meet up if they were local to each other, or we even had a story of a woman who came from Australia to meet friends from all over the world who she had met on the discussion forums. But as the world is big and as we serve a whole, we serve people worldwide, these are online for... I mean our online support groups have really just thrived. And I still get so moved every time I watch someone even in Zoom or in person really connect with their people. There's this moment, this spark that when they realize someone actually really gets it and gets the fear. That's what it's like to be bald at 32. And even if you're 32, you feel 80 perhaps. So how to make these treatment decisions that when you're with decades ahead of you.

So because cancer, it's very lonely at this age and it's hard to describe what you're going through. So your world been split and friends are talking about things that are very different than what you may be talking about, and suddenly things feel very trivial and you feel alone. And if you're metastatic, if you're living with metastatic breast cancer, you're carrying the weight of knowing that this isn't temporary and suddenly you're facing mortality when nobody else is really talking about that in your age group. Community just isn't just emotional support, it's also very practical. As I mentioned, tons and tons of wisdom, sharing tips on managing side effects, strategies for talking to kids, advice for juggling work and treatment or continuing their career or not continuing their career, when to research disability, how to pay your loans back. So they show up for each other. Even between groups, they are meeting on the discussion forums. If they're not in our groups, they're exchanging usernames and even phone numbers. So there's a lot of connection happening, even that supporting around our weekly groups.

And just having people who celebrate your good days and sit with you through the hard ones just makes all the difference. It helps you cope, helps you heal and feel that helps you keep living a life that has meaning and joy, even when things feel really uncertain.

Athena Jones: Right. And you having people who can encourage you that they've been through it, just went through it, that you're going to be able to give you a sense of what to expect, for instance. Brooks, the Young Survival Coalition has created programming for subgroups within your community. You touched on this earlier, but can you tell us about the benefits of connecting with people with shared identities, whether it's ethnicities, experiences? Talk about that.

Brooks Fuentes: Yeah, definitely. It's like where cultural humility comes into play. That's what we lead with. Some people, they always talk about a safe space, but a safe space means different things to different people. Sometimes it means that you see the person leading the group looks like you, or for others, it's what language that you're speaking, or cultural practices that are honored. So that is why we want to create these identity-based spaces, because breast cancer doesn't happen in a vacuum. It intersects with who you are as a person. So we try to lead with that and we have listening sessions at each of our summits with our different affinity groups just to get what they need. We are led by our community and answer to them. And so we see that making these protected safe spaces around a shared identity creates a lot of trust. People open up faster.

So it's also navigating a healthcare system sometimes is scary as a person of color or as a queer person or somebody who doesn't speak English. And so we want to be able to support them psychosocially here at Young Survival Coalition, because peers can become trusted messengers kind of being like, "Well, mammograms hurt, but this is what I did," for instance, and this is how I handled the situation. So it's not that general support groups don't work, it's just that we want to provide something for every person out there. Everyone is an individual and we want to respect that.

Athena Jones: Absolutely. And someone who is facing metastatic breast cancer is going to have a lot of different concerns than someone who was discovered it in an early stage.

Brooks Fuentes: Exactly.

Athena Jones: So it's really important. Mackenzie, First Descents uses physical activity for emotional healing. We've talked a bit about the kinds of activities that First Descents offers, but why do you think this approach is especially effective for young people, like younger women being diagnosed?

Mackenzie McGrath: Yeah, that's such a good question. A couple reasons. So we know that young adults are often looking for alternative forms of community connection, like we've talked a lot about already and healing outside of a clinical setting. Folks don't want to hang out in the hospital any more than they have to. So that's a lot of what we do, is offering the out-of-hospital non-clinical healing and community option for people that are looking for something that does complement their treatment at the hospital. We're certainly not trying to replace the biomedical model, but rather complement it through more integrative and holistic avenues. So I think that there's a tremendous amount of desire in what we offer from that standpoint.

And then we also know that physical activity boosts our mental, emotional, spiritual, and physical health. Even a few minutes outside every day has an incredibly healing, tremendous impact on one's mood and overall quality of life, that physical activity can help reduce fatigue, improve self-efficacy, reduce anxiety and depression, improve sleep, stimulate appetite, strengthen general immune system, and overall muscle strength and bone strength and range of motion. So there's a lot of benefits that goes into movement and movement outside. And I will also just highlight, because oftentimes we're seen as just the adventure physical activity forward company, which that's a big part of what we do, but we're just as big on the community connection piece, which we've already talked so many reasons about the benefits of that. But it's a powerful combination of bringing people outside in nature, disconnected from the phone and doing it with their peers. So just as beneficial as a community component is the physical activity component.

Athena Jones: Wonderful. To close, I'm just going to throw out this question any of you can answer, but I think it's important for those who are tuning in, if some of you share a few words for anyone who may be listening, who is having a tough time with anxiety, with doubts, with fear, whether about cancer or because they're facing cancer, does anyone have a few words to share? And you can just jump in as you'd like.

Melissa Jenkins: I can start. First, everything you're feeling right now is completely valid. I want to just say that. The anxiety, the fear, the why me? How did this happen? moments - it's all very normal and it's going to come in waves. And some days will be easier than others, and that's just how it is. And it will be okay. But you don't have to be strong all the time. You don't have to pretend you're fine when you're not, and you definitely don't have to figure this out by yourself. Talk to people, find your community, find your people. Ask questions that are weighing on you.

When someone offers to help, whether it's a ride, hanging out, just listening, say yes. Just say, yes, I know. Let people show up for you even when it feels weird or you feel extremely vulnerable. There's real support out there. People who get it, information you can trust, and there's communities online like ours, and in real life where you're not alone, those connections can really help you find moments that will feel good again, even on those days that really stink.

Finding small things that make you smile, give you joy - music, memes, your animals - whatever it might be, however small, doing a puzzle, do it. Lose yourself in it. Just take a moment to lose yourself and not think about cancer. And one more thing, you're much bigger than what's happening right now. There's still a whole life ahead with meaning, connection at any stage. There's that. There's experiences you haven't had and you don't even know you can still do, and you will do it. You can do it. You just don't have to see the whole path. Just take it one day at a time.

Athena Jones: That's a great place to end. And thank you, Allie, Brooks, Melissa, and Mackenzie. We'll be emailing a link to learn more about each organization for everyone who's tuning in. And now I'm excited to introduce two women, many of you have gotten to know through their storytelling and content on social media. Welcome, Jeanelle Adams and Dani Trops, both breast cancer survivors and incredible patient advocates. Hello. So I'd love to start with each of you sharing some background about your diagnosis. Jeanelle, do you want to start?

Jeanelle Adams: Yeah, I'll start. So I was initially misdiagnosed for two years before I was officially diagnosed. I was told that I was too young for a mammogram, and I was told I didn't have the symptoms like a lump. I had a rash. So I was told I had eczema and it was probably my diet and everything else. Two years later at 33, I was diagnosed with stage three triple negative breast cancer. I underwent 23 rounds of chemo, immunotherapy, had a double mastectomy, no lymph node involvement. But right now I've just celebrated two years remission on the 10th. So it was my second birthday. So I'm happy about that. And I just got my surgery date, not official date, but somewhat date to get some new boobs. So I'll be having those, Dani, to show off. I can't wait.

Dani Trops: Oh my God. Well, congrats on that.

Jeanelle Adams: Yeah, I'm excited.

Athena Jones: But every time I hear your story, it makes me just still infuriated that you dismissed Dani, share the story of your diagnosis.

Dani Trops: Yeah, so I was diagnosed when I was just 30 years old, and I ended up finding the lump myself. I had some strange pain on my right breast that I really just had never felt anything like before, and it kind of kept coming and going throughout the day. So I ended up doing a self-exam, and that's when I found this lump that I had never felt before. So I quickly got into an appointment as fast as I could. And from there I was told by the doctor, "You're young, you don't have any cancer history in your family. Do you want to wait and see how this ends up? It probably is nothing. Or do you want to do imaging?" And it was kind of put on me to decide which way I wanted to go. So I ended up saying, no, I want to get images. I don't want to sit here and wait for this thing. Because I don't know, maybe it is something that just needs attention.

I never really thought cancer, but I just thought I wanted to get it looked at to make sure that if it was something that needed some kind of attention that I was going to timely fashion. So I ended up going through with an ultrasound, and in that ultrasound, the radiologist came and sat me down and was like, "We've got to go biopsy this. It doesn't look great right now, but I don't know. So let's go into biopsy." And did that. And then on October 13th, which was a Friday cruel joke, I heard the words, "You have breast cancer." I have no breast cancer in my family. I don't have a genetic component within my diagnosis, but I did end up having two different tumors in that right breast, and I went through with a double mastectomy.

And then I did chemo. I did IVF before chemo as well to preserve some eggs. I did eight rounds of chemotherapy, and then I did reconstruction into implants, which are under the muscle. And now, I am in eight year cancer survivor. So yeah.

Athena Jones: It's wonderful to be on the other side of it. But again, we hear this too often, "You're too young. You're too young." And I really think this is important, getting this message out so that people don't just dismiss it themselves or let themselves be dismissed.

Tell me, Jeanelle, what initially motivated you to start creating content about breast cancer on social media? It's kind of a big deal to be out there like that. And what was your first post, your very first post that had to do with breast cancer?

Jeanelle Adams: My first post was just the carousel of New Year's, the yearly thing. It was that, and then it was Christmas, my family pictures of me bald, and that was really my first post. But yeah, what motivated me honestly was I didn't necessarily know how to talk to my daughter about it, and I didn't have anyone else to talk to about it. It was like, "Who else? I don't know anyone young, I don't know nobody Black that's going through this."

And she was eight years old when I was diagnosed. So for me, the doctors tell me she has to start getting mammograms at 19, 20 years old. I knew that this conversation had to be sooner than later, and I wanted to make that conversation comfortable. I wanted to talk to her about boobs, I wanted to talk to her about everything. So I just started sharing online. And I started to talk about my boobs, and I started to just tell her things like, "There's good lumps, there's bad lumps, but just know you're normal."

And she was 8, now she's 11, and now she's doing self exams and having her friends do self exams. And so for me, it's really for the people behind me, the girls, the young girls behind me so they can kind of understand this breast cancer jargon. They can understand or they can have someone like me and the community to come to if they have anything. And I don't want anyone ever to be blindsided the same way I was blindsided when I was misdiagnosed. I didn't know the questions to ask, and I'm here, so ask me.

Athena Jones: Wonderful. And Dani, what initially motivated you? Go ahead.

Dani Trops: Yeah, so I actually started posting on Instagram mostly for my family and my friends to be able to know what was going on with my journey, because it was so overwhelming. As anyone can relate to within a cancer diagnosis, it is just an overwhelming time where there's so much going on. And I just didn't really want to have to text a million people the same things, or email or have a phone call, so I just was like, "I'm just going to put it here."

And this mural is actually something that was down the street from an apartment that I was living in Brooklyn at the time. And I was like, "I'm going to take a picture in front of that," because it just felt symbolic in so many different ways. And this was the first post that I did, just announcing that I was diagnosed with breast cancer at 30 and saying I was going to share my journey. And from there, it just started.

I started realizing there was this community online that not only could I connect with and learn from, and build friendships with, but then it was also if I could help one person a day by sharing something that I'm going through, then wow, that's an amazing purpose that cancer just gave me. So, I feel like both of those things combined was really what motivated me to keep going with posting on social media and sharing so much as I do. So yeah, that's kind of a little bit of my story.

Athena Jones: Kind of a newsletter for all and kind a way into the community, helping people connect. And I think I hear that so often, "If I can get one person to go get a mammogram." And I guarantee you may never know the number of people you've reached, but you're reaching a lot of people through your activity.

And between both of your accounts, there's a lot of talk about self-exams, self-esteem, side effects, relationships, mental health, survivorship, finding community, which we've been talking about a lot, advocating for yourself. The list goes on. How do you guys decide what topics to cover and kind of the creative direction for your posts? Jeanelle?

Jeanelle Adams: I feel like my content just comes from my real life. Whatever I'm living through, someone in my community is going through. There's a lot of people within the community that are just not active online and don't want to be active online. So they'll say certain things like, "Hey, can you post this?" Or, "I have an idea for you." And a lot of that happens because we're just, I guess like Dani said, it's just our community now.

And when I talk about things like side effects, mental health, and feeling disconnected from my body after surgery, it's really just like, "I just went to this appointment and my doctor just pissed me off, so I want to tell my community everything."

And just for me, it's like filling the gaps in the voice of all the pamphlets. Everything isn't all pink and it's not all good. Those awareness campaigns, they're great, but it's not the reality. So, us showing everything unfiltered, it just makes people feel seen and then somewhat informed, and that's really what we want, I think.

Athena Jones: Go ahead, Dani. Can you share the same about the issues that come up and how you decide what topics to cover? For Jeanelle, it sounds really organic, and she's responding to the community. What about you?

Dani Trops: Yeah, I feel very similarly in like everything that I post, I feel it, and I feel like I am right there alongside the community. So it really depends on the evolution of where I am within survivorship. So a lot of this stuff, this is one of my series that I've been doing with the You're Inside the Head of a Cancer Survivor, these are ad-libbed entirely because it is actually the thoughts that I have on a daily basis.

So I don't know, I just feel like there's a, just to Jeanelle's point, the reality, the raw reality is not something that is seen as often. And that's just what inspires me because I feel like I've just been having so much of those feelings lately, especially where I'm at in survivorship, that it just feels so cathartic to release those feelings. And then that is also helping those in the community feel really seen and heard and understood.

And again, amazing if that can be the case, 'cause we're just helping each other in that way. So, that's really where I get my creative inspiration, is my own emotion. But then also just hearing other community members talking about other things, and I'm like, "Oh yeah, I think that, too." So it's kind of a collaboration, in a way. I'm just the person creating it, but it's still a collaboration with-

Athena Jones: It's a conversation that you start.

Dani Trops: Yeah, exactly.

Athena Jones: I know. An ongoing conversation.

Dani Trops: Yeah.

Athena Jones: And I know I'm sure from the response you guys have gotten just from your social media activity, and everything I see in activism, people do really appreciate that authenticity, stepping away from the TV cameras and the commercials during Breast Cancer Awareness Month and really talking about what you're really going through and really feeling. You want to be a source of encouragement, but I think it's also good to show that there are ups and downs and you can get through them. And so I think it's really great.

I want to bring up shame and societal norms. Years ago, you would never see women proudly showing their bodies during and after breast cancer, and now my whole feed is full of people, whether they have construction or not reconstruction, and just sharing a lot more than you would've seen a decade ago. How are you and other young people with breast cancer shattering the stigma through the use of social media? Either one of you can jump in to start.

Jeanelle Adams: I think that social media, it gave us a will to rewrite our own narrative without PR filters and without perfection. Dani, to me, honestly, I'm two years in, and not having nipples for two years, and Dani to me, is someone that I look at her post, and when I feel some type of way about my breasts, I'm like, "My girl Dani is going to make me laugh." And I love the dark humor because I feel the same way.

And I feel like for so long, being a survivor was just built on, "You're so strong," but the drains aren't shown, the scars aren't shown, our nails not growing back correctly aren't shown. So I think that it's more so visibility, and we're showing that this is what it's like to be in our 20s and our 30s and have cancer, and going through menopause at the same time with our moms. And this is the reality.

Athena Jones: Right. And Dani?

Dani Trops: Yeah, no, I love the menopause as your mom, and it's the same as your mom. I totally feel that so much. But also, yeah, I feel like you hit the nail on the head. And I feel like I'm just going to build on what you said in terms of the stigma of also not only body positivity and showing off that kind of thing, that's great, but I also think that there's this stigma to be broken around what we're supposed to feel in terms of cancer survivorship.

I think there's this stigma that you're supposed to feel grateful and you're supposed to be positive all the time, and positivity is hope and all of those different things. And sure, there's a lot of positivity and there's a lot of light, and there's a lot of hope that comes through a cancer diagnosis, but there's a lot of real raw emotion, and we can't be strong all the time. And I don't even really like the word strong because what does that mean? Are we lifting weights? Are we strong because we got chemo in our arm? Those are things that we didn't choose either.

So, I do feel like breaking the stigma and the glass ceiling around what we should be feeling because we've gone through something hard. There's no right or wrong. We need to feel what we're feeling, because the only way past that and to get to healing is through it. So that's kind of the stigma that I really like to touch upon.

Athena Jones: Yeah, I like the sound of that. It's so true, you can't go around it, you can't skip it. You have to go through these things. And I think even though it's not always joy, it's uplifting to be able to show, "This is the hard thing I went through, then this is the other side of it, and oh, this other hard thing happened again." But then to be able to share the not, quote, unquote, "Pretty sides of it," but then also share the uplifting thing. And I think in combination, it gives people a really full picture and helps them feel like they're supported and understood.

And of course, it's vulnerable. I mean, going out there, you posing in front of the mural and sharing pictures with that with no hair. Has being vulnerable and open about your personal story, has it been worthwhile? Who or what has this journey on social media brought into your life? And also, has there been a downside? If there is, share that too. Dani, you can start.

Dani Trops: Oh, okay. So yeah, first and foremost, just kind of what we've been speaking on, I 100% think it's worth it. Not only feeling like I could help possibly one person a day like we were saying, that's just in itself so amazing, and I would give that every day if I can. But also, I've met so many amazing people through what I've been sharing and been through connections, and I've met some of my best friends now, and best friends if you want to call them that.

But truly, I have met some of the best people that I know by sharing my own journey and then connecting with them. But not only that, I think that it's also by sharing what I do, I have found so much healing and so much hope through doing that. Like we were just saying, the only way passes through. And by sharing those raw and deep, darker kind of parts of it, I feel like I am really feeling the healing coming back to me, too. So it's not only like am I helping others, but it's also helping me too through it. So, I would say it's 100% worth it.

I'd say the downside, of course I'm going to give the obvious one. Anything that you're sharing in terms of breast cancer, there are always going to be those downsides of the men that come in, just point-blank. They need to get out of the chat, in a lot of ways. So unfortunately, because you're talking about breasts, there are this sexualization of it when it is not at all that topic at all. There's nothing about this that is, quote, unquote, "Sexy."

Of course, we want to feel good and confident, and there's those parts of the conversation, but it's not centered around sex. So, that is the downside, I would say, that I found at least, is that sometimes these people come in and you're like, "Nope, you're missing the point entirely."

Athena Jones: "That's not what we're here for. Exactly."

Dani Trops: "That's not what we're here for."

Jeanelle Adams: I agree.

Dani Trops: "You have lost the assignment, you've lost the plot."

Jeanelle Adams: Yes, I agree. That is true.

Athena Jones: And Jeanelle, what about you? Who is being active on social media in this way brought into your life, and what have been, not just the upsides, but any downsides?

Jeanelle Adams: Well, I would definitely echo Dani, it's definitely worth the while. My neighbor's dogs weren't crazy, if y'all can hear it, but I don't know why they leave her outside. But I feel like, for me, I've always just been private. I don't know if it's just culturally being a Black woman, we don't tell our business.

My mom tells me all the time, "I don't know how you do it. I don't know how." But if I would've never done it, I would've never met, like Dani said, my best friends. I would've never found this community.

And I do feel, I get messages from people, and it's so weird when people even say, "Your post helped me, talking to you helped me." And those relationships are worth it. And to echo Dani, I recently just received a comment and it was very sexual, and I said, "What is going"...

Dani Trops: Tag me on that, let me at them.

Jeanelle Adams: And it was not restricted or anything, but the downside, I feel like the downside for me would just be not... I don't really have a downside 'cause I don't care anymore. At first, I was just trying to be private, because when I started my Instagram, no friends knew about it, and I just started it. And now, it's more I'm just open. But before, I would've been, "I don't want people to know. I don't want my friends to know or just people in my neighborhood." But now, I don't care. It's out there.

Athena Jones: Right. And again, with all this overlap, so many of us follow each other and there's just a lot of amplification, and I just think it's wonderful. It means we're reaching more people.

Jeanelle, what do you struggle with still when it comes to grief and cancer, the after effects on your life, and how has creating content helped you process those feelings?

Jeanelle Adams: So for me, grief and cancer, they're deeply connected because I lost my dad and my grandmother the same year I was diagnosed. So I feel like I was grieving my old life for real and fighting for my life. But what I've really learned about grieving is it doesn't care if you have cancer. It doesn't stop when treatment stops. It kind of just changes.

Now, I feel it just changes with every cycle that my body's going through. So, I missed the way my body was before, I missed the way I can do certain yoga poses, or I missed the hugs that I can feel from my nieces and my nephews. But now, it just evolves into different ways. I think it's really turned, "Pain," quote, unquote, into purpose, really.

Athena Jones: Right. And Dani, what do you still struggle with? And being active on social media, has it helped?

Dani Trops: Yeah, I think it definitely helps in terms of just being able to express those feelings. But I think the grief that I feel most often is grieving how easy life used to feel and how much cancer has built a complexity to that. And just grieving for the person that I could have become, I guess, is my way that I would say that.

It's just to Jeanelle's point, I've danced all my life and now coming to this point in survivorship, I'm like a Tin Man, creaky and old, and my joints hurt, and dancing has become a lot harder for me. So the fact that I'm still in my 30s and not able to do something that I love and I'm passionate about, and should be able to, it's like those are the things that I grieve a lot for. It's just the ease of life and also just the things that I used to be able to do with ease. So yeah, I think both of those feelings.

Athena Jones: I think there's something about being diagnosed young. Of course, cancer at any age changes your life. It just disrupts your life. I've met so many people who were diagnosed young who kind of made this part of their life's purpose and mission to spread the word, and make sure that other people coming after them know that this can happen.

And I think it is wonderful to see, like I said, healing through advocacy, using your own experience to help so many people. What would you say to someone who is looking for a way to express themselves, they want to start sharing their story, but they're not sure how to get started? What would be your advice?

Jeanelle Adams: Start small, start real. You don't need a huge following. You don't need a fancy setup. You just need honesty. And for me, it started with one post talking about what I was going through and what I wish someone would've told me, and how I wish I would find a community.

So, if you're unsure how to start, I just say, talk about what you're struggling with, and I promise you there's going to be someone else that is going to be struggling. There's going to be a comment and someone's going to say, "Oh my God, I'm going through that, too." And always remember that being vulnerable, it's really not a weakness.

Athena Jones: Well, it's all about connection, right?

Jeanelle Adams: Yes.

Athena Jones: It helps you connect with other people when you're not trying to act like you've got it all sorted. Dani?

Dani Trops: Yeah, no, I entirely agree with that, just starting small. And also, I feel like something that's helped me is just kind of trying to figure out what is your superpower within this? So, I don't know, are you feeling like you want to share your struggles? Is that something that you're really good at expressing? Or is it something that you want to share the light and positive nature of it? Or is it something that you want to share just your journey in general?

It's all of those things, but you superpower is you and who you are, so sharing who you are, that's the best. You can't do anything better than that, is just sharing who you are authentically. So that would be my biggest piece of advice, but start as small as you want and build as much as you want, and don't compare. That's the other part. No comparison. Just you be proud of what you're doing, and be proud of who you are and what your story is, and that's the best thing you could do, because you as you is awesome.

Athena Jones: I so agree. They say comparison is the thief of joy. We're all ourselves. And if you bring yourself, I feel like there's no real wrong answer. You know what I mean? If you're comfortable sharing what you're sharing, and want to spread the word about one thing or another, I think don't be afraid, just go for it.

My last for each of you is a little bit about the future when it comes to content creation. So, you already have a big following, each of you. Do you have any goals or are there specific topics within breast cancer or the larger cancer community that you're working on for the future?

Jeanelle Adams: I have goals. I have a lot of goals.

Athena Jones: I guess related to social media or related to your social media-

Jeanelle Adams: Yeah, social media, I feel like my next goal is going to be My Road to My Boob Tour. Right? And I'm getting some new boobs, so I want to do that.

Athena Jones: Bring people along.

Jeanelle Adams: Yeah, just come along, get on my boob... I'm trying to be as comfortable as Dani. I promise, I'm going to be comfortable as Dani. Okay?

Dani Trops: Oh my gosh.

Jeanelle Adams: That's my goal.

Dani Trops: I am already proud of you.

Jeanelle Adams: Okay.

Dani Trops: Yeah, I think my goal just continues to be the same as it's been, is just helping as many people as possible and creating a safe space where people can feel seen and heard and understood. And I think for me, the future is just really continuing this journey of healing. I'm in, I think the biggest healing part of my survivorship era, whatever you want to call it. I think that's just really what I'm honing into in my heart.

And then I have a couple of other things that I'm working on that I'm not going to talk about just yet. I've kind of teased it a little bit, but just know I love writing, so that's just my teaser.

Athena Jones: No, I like to hear you both talking about continued healing. I finished treatment seven years ago, yeah, about seven years ago, and I feel like I'm still healing, and I'm healing through community, and through connecting with people, and through at being an advocate, and through my documentary that I've been working on that we're hoping to start editing soon.

All right. We have to leave it there. Thank you, Jeanelle and Dani, for all you guys do on your platforms. Thank you for joining us today. Everyone will get links in their email to check out and follow their accounts, so all of your accounts. And so now I'm going to hand it back over to Dr. Weiss. Thanks everybody.

Dr. Weiss: Hello everyone. Oh, wow. Thank you, Athena, for bringing those important conversations forward. We've learned so much, and it's so inspiring to hear from these powerful organizations, and the fabulous, bold, courageous leaders who have started them, making them, growing them, and making them available to other people who really benefit from them, and making such a meaningful difference out in the world. So we're so grateful to you.

For Breastcancer.org's special series on being diagnosed young, our editorial team explored a range of topics that desperately needed more research and attention. And we put people's lived experiences front and center, with podcasts, interviews, and articles. For many issues, there are still more questions than answers, and we all know one set of answers often leads to more questions.

So, it's a conversation that keeps going, and more information than we need to discover and share. But we're committed to giving you the most accurate, current information now, and we'll stay on top of updates to share with you in the future, as we have for 25 years. We'll send you a link to all of our new content, and you can always search Breastcancer.org.

Before we go, I want to share resources that may help you with a cost of care. Since so many of you have told us about your financial stress, it's understandable. Loss of income and big bills from a cancer diagnosis, they both can be crushing.

The organizations that you see on the screen provide assistance with medical and nonmedical expenses, including help covering fertility preservation, transportation for appointments, cold caps, wigs, nipple tattoos, mental health support, or help with navigating your finances after breast cancer. You can go to breastcancer.org/chartable-resources to find out how to apply.

And a very big thank you. A breast cancer diagnosis at a young age changes everything. It touches every part of life far beyond treatment. Someone's career, family, identity and plans for the future are met with uncertainty. But as we've heard today, there are resources, experts, organizations, and people in those organizations that you've met that can all help, including the help that you give each other.

Breastcancer.org is always by your side to offer support to our community, programs and content. So, on behalf of our Breastcancer.org team and the amazing people who are here with you for this webinar, thank you again for taking the time to join us for this important educational event, this webinar. Take care of yourselves, please.