Beyond Treatment: How to Get the Follow-Up Care You Need

Lisa Kline: Thank you all so much for being with us. I'm Lisa Kline, the VP of Marketing and Communications for Breastcancer.org. Today's featured speakers and Breastcancer.org's, contributing writer Jen Usher are on hand to help answer your questions and suggest resources that might be useful to you.

It's my pleasure to introduce the founder and chief medical officer of Breastcancer.org, Dr. Marisa Weiss, a breast oncologist with more than 25 years of practice in the Philadelphia area. Dr. Weiss currently sees patients at Lankenau Medical Center and Paoli Hospital, both part of the Mainline Health System, where she serves as the Director of Breast Radiation Oncology and the Director of Breast Health Outreach. Please join me in welcoming Dr. Weiss Breastcancer.org's, founder and chief medical officer. Welcome Marisa.

Dr. Marisa Weiss: Thank you, Lisa. Hello everyone. I'm Dr. Marisa Weiss. Thank you all for joining us today. Before we begin, I want to thank our generous sponsors for making this event possible. We have Lilly, AstraZeneca, Biotheranostics, Pfizer, Gilead, Novartis, Exact Sciences, and Seagen, and later in the program we'll hear from Donna Hopf, lead for Breast Cancer advocacy at Lilly. We're looking forward to hearing more about Lilly's work. Thank you so much to all of you for supporting Breastcancer.org.

We're honored to be joined by a phenomenal group of experts who are leading the way in helping to support people after their main breast cancer treatment is over. Many of them contributed to the latest Breastcancer.org special report on expecting more from your follow-up care and we're grateful for their insights and the work they do advocating on behalf of patients. To start, Dr. Fumiko Chino and I will be sharing our survey results.

Dr. Chino is a cancer researcher and radiation oncologist with a focus on breast and gynecologic cancers. She's co-lead of the Affordable Working Group at Memorial Sloan Kettering Cancer Center and is also one of the directors of the Cost of Care group, an NGO focused on affordability in healthcare. Dr. Chino has been nationally recognized for her research, including the inaugural 2022 ASCO Excellence and Equity Award. Afterwards, we'll hear from a panel of survivorship experts including Dr. Hoda Badr, who is a research leader in the area of cancer survivorship. She's leading an innovative study on optimal post-treatment care at the Baylor College of Medicine called OPTIMISE. Also joining us, Dr. Evelyn Robles-Rodriguez, an oncology advanced practice nurse at MD Anderson Cancer Center at Cooper in Camden, New Jersey, where she serves as Director of Outreach Prevention and Survivorship. Dr. Erin Roesch is a breast medical oncologist at Cleveland Clinic Taussig Cancer Institute. She's very involved in clinical trials research. Some of her interests include the development and application of new therapies, fertility and oncology patients, and survivorship.

After hearing from the experts in survivorship care, we'll hear from a panel of patient advocates who generously shared their stories with us for our special report. And then joining us later on, we have Megan-Claire Chase. She was diagnosed at a young age with stage IIA invasive lobular carcinoma. She's a passionate advocate, effective in shedding light on the struggles of patients and survivors diagnosed under age 40. Today, she is the breast cancer program director for early-stage at SHARE Cancer Support. Joining us also is Amanda Helms, who was diagnosed at 33 years old. She's an advocate on the National Coalition for Cancer Survivorships Cancer Policy and Advocacy Team. She's also a military spouse. We also have Kate Rosenblum who is an active member of our Breastcancer.org virtual support groups. Kate entered the survivorship phase earlier this year after wrapping up her active treatment in late spring.

Thank you all for being here. You all are amazing. So I wanted to start with a quote that kind of centers us. It's Amanda Helms, one of our panelists today, shared what it was like for her once her main breast cancer treatment ended. She said, "It's kind of bleak for the average breast cancer patient trying to get follow-up care. I was confused about which doctor I should see for what. I found that primary care providers wanted to refer me back to my oncologists and my oncologist wanted to refer me back to primary care." This is something we hear all the time as many in our community know, transitioning to survivorship care can be a ton of confusion – especially if you're unclear about who will be managing your follow-up care, who's in charge, what kind of follow-up care you'll need, and how to manage any lingering side effects.

For years, Breastcancer.org has conducted research surveys on topics important to our breast cancer community to uncover unmet needs and to provide unique insights that help problem-solve and advance care for each one of you. This month, we released our latest special report titled: Beyond Treatment: Expecting More from Your Follow-Up Care. The report offers tips to help you navigate the challenges of ongoing care and support and includes results from our survey study, which I'll share with you more about in a minute with my colleague Dr. Fumiko Chino, when she joins us. Use the camera on your mobile device to scan this QR code or visit the URL on the screen to read this special report on Breastcancer.org.

Joining us today to look at the results from our survey, we have Dr. Chino of Memorial Sloan Kettering Cancer Center. Thanks for being with us today, Dr. Chino. She's a great colleague and has really been instrumental to making this work happen. Working with Dr. Chino and Dr. Patti Ganz from UCLA, Breastcancer.org took a deeper dive into what happens after breast cancer treatment is completed. We wanted to better understand how satisfied people were with their transition to survivorship and follow-up care and determine whether they received and/or used what's called a survivorship care plan, and if they were educated on potential side effects that may linger beyond their active treatment.

There were 995 U.S. residents who have been diagnosed with breast cancer in the past 10 years who responded to our survey over a seven week period of time. The average age was a little bit over age 60. There was representation across all stages including people with metastatic breast cancer. The key takeaway from our research is that patients are left feeling unsatisfied with the transition after active treatment. 35% of the people we surveyed felt more like the quote we just saw earlier: "I was confused about which doctor I should see for what." Our special report, the research we're sharing today, and this webinar are all efforts to close the gaps in what you as patients need to know.

Dr. Fumiko Chino: Thank you so much for that introduction to the survey. I was so excited to be involved in the process of serving survivors with breast cancer about their experiences. And one of the primary things that we found other than potential gaps in survivorship care is that side effects really may not be well explained to patients. What we found is that long-term side effects were less often explained to patients in a way that they could understand and remember. However, in both short- and long-term side effects, over 40% of patients actually researched the side effects themselves to get the information that they needed. Now, it's important for providers to educate patients on the common side effects of treatment so that patients know what to expect. So for example, I often warn my patients that scar tissue and the breast can become more prominent even one or two years after radiation, and I also reassure them that if they feel like their scar is changing and they don't know what's normal, that they should let us know so that we can examine them and either provide reassurance or order additional imaging as necessary.

Now, for those people who were completing this survey, we asked them to talk about their fear of reoccurrence or their other side effects and what came across as top concerns were mental health concerns and that fear of reoccurrence were really significant. And fear of reoccurrence was really directly correlated to whether or not doctors initiated a discussion about a follow-up care plan and also with patients if they received a survivorship care plan at the end of their main treatment. And so essentially better communication with providers can really make a difference in terms of fear of reoccurrence. It really highlights a critical need for patients to be well-informed in this transition period and an opportunity for doctors to give their patients peace of mind to know what to expect.

Now, the next slide will show that we're talking about is that these insights really led us to look closer at some research from Dr. Patti Ganz, from UCLA. She is a distinguished professor of health policy and management medicine. Her team had surveyed oncologists about survivorship care planning and identified some key gaps for breast cancer survivors, particularly in the screening and management of long-term and late side effects – cognitive impairment, sexual dysfunction, and body image – as well as psychosocial effects, such as distress, depression, fear of reoccurrence and anxiety are common, and yet they often go unrecognized in breast cancer survivors and are really associated with some worst outcomes. Looking back to our survey insights specifically, patients indicated that things like body pain, vaginal dryness, sleep problems or fatigue, hot flashes and anxiety, difficulty concentrating, and hair loss were the most common and severe symptoms that they were experiencing and these symptoms actually caused one in four respondents, roughly, to actually take less of the medication than was prescribed, including about 15% that actually had to stop taking medications altogether. All in all, both providers and patients did rank pain as the top side effect that patients experienced and reported, but I think what you can see is that there's some gaps in terms of what providers and what patients think is important and needs to be addressed.

The next slide shows that Dr. Ganz' survey results really showed that many oncologists continue to provide long-term care for breast cancer survivors rather than engaging in shared care or fully transitioning care to either a primary care doctor or another clinician. And these models of shared care between oncology and primary care providers, you need to warrant some further investigation because the barriers to involving a primary care doctor and survivorship care definitely exists, so primary care doctors like oncologists are facing some increased workloads, some time constraints, and there's some anticipated workforce shortages. I know this specifically for my own patients when I ask them about their primary care doctor and they say, "Well, they can't get me in very often." These concerns about even for example, primary care doctor's knowledge and skills related to breast cancer survivorship have also been expressed by both oncologists and patients and this results in some additional barriers to transitions of care.

Now, when we think about the transition to survivorship, our next slide is going to talk about essentially our two key takeaways for this transition period, which is that even though we know that primary care doctors can provide a really valuable role in follow-up care, half the time, sadly, they're just not really involved and, sadly, less than a third of patients remembered having received a survivorship care plan from their oncologist. And it really begs the question, if not from their doctors, where do patients turn to for resources to navigate through their survivorship and their follow-up care?

Dr. Marisa Weiss: Absolutely, and there can be communication gaps. It may be that your primary care doctor doesn't really know what's going on in your life because they're not seeing all the notes going back and forth between the oncologist, so they may not know to reach out to you to say, “Hey, I hear you're going through this situation or this challenge in your life. Let me know how I can be helpful.” That might be something that you want, but they may be in the dark about what's going on. So clearly communication is critically important and we find that a large majority of respondents in the survey reported receiving information from online sources like the community at Breastcancer.org, online and print articles, friends and family, books, support groups, and webinars or podcasts, and this is good, but you need more information specific to your personal situation. You want to gather all that information, but to know how it applies to you and your situation means you need follow-up care by your own set of doctors. That's critically important to making sure that your plan is customized and is responsive to your specific health needs because you want to stay healthy, right? You want to reduce your risk of ever seeing a problem again, like recurrence, and everyone wants to live a long and happy life when you get to do what you want to do, when you want to do it. I call that the full-life view and everyone deserves their best shot at that.

One of the most helpful resources available to patients were patient navigators. Those are the people in the hospitals whose job it is to facilitate your care, and you may have had access to them in the beginning and maybe you missed seeing them throughout the rest of your care ,or maybe you had them in the beginning and through the initial steps and then you seem like you were on a plan and you didn't get to see them again – everyone's relationship is different. But people reported to us that they were really important.

However, when it comes to navigators, only about three in 10 people reported working with a navigator. This could potentially be due to the scarcity of navigators available to help – like, you might have them, but they might be busy for people who are just being diagnosed, for example. Maybe there's one in your hospital but you weren't referred to one or you didn't get the benefit of that person's services when you needed it the most. Survivorship or follow-up care should almost be thought of as a long-term health concern. Even though you finished your initial treatment, your history of breast cancer remains a long-term health concern that requires ongoing care by your primary care provider in coordination with your team of specialists. Your primary care provider can be your ally in your ongoing wellness after treatment, so the person who hopefully knows you, can know what matters most to you, and can help be your wing person – like the one who's going to help you get what you need.

When it comes to tips, our goal for today's webinar is to empower you with steps to get the follow-up care that you need. Our panelists will share their insights and experiences with us, but I want to leave you with a top 10 list of ways to get more from your follow-up care as you begin to transition beyond your active treatment. And these tips came out of our special report from people like you who shared what mattered most, what helped you the most, and what you'd share with someone else that would help them. So if you're like me, I'm a breast cancer survivor, too. I've had to work every day, it's been 13 years, to try to be as healthy as possible. It's hard work to take care of yourself and manage your risk in order to have that best shot at a full-life view. Again, allowing you to do what you want to do, when you want to do it for as long as possible and to be as independent a person as you can be.

Here are the 10 ways to get the best follow-up care for you as suggested by our amazing community at Breastcancer.org. Well, step one was to make a survivorship care plan around the time you're completing your main treatment. Ask to meet with a member of your oncology team that you feel close with to have a detailed conversation about what your follow-up care could look like and help plan for it. At that appointment, talk about any concerns you have about your physical and mental health, which members of your health care team should be involved with or leading your follow-up care as well as helping you determine the next steps. But it's good for you to do your homework and let them know what's most on your mind because they're not mind readers. They may not know. You can also ask your oncology team for a survivorship care plan or a link to one online and ask them to help you fill it out. It should be a written document that includes a summary of your diagnosis and the treatments that you received, including information on late or long-term possible side effects that you might develop, and personalized recommendations for what you should be doing in your follow-up care, and you also want that document to have contact information.

Second tip: Know which tests you need and which ones you don't. Close monitoring and follow-up care is important for everyone, but how you monitor depends on your unique situation. Your medical team will assess your body's response to treatment, how you're healing, any signs of a new abnormality. For people who are in early stages of disease, you probably will have physical exam, breast exam, mammography, like you did before. For people at higher than average risk, because of let's say a strong family history or a known inherited genetic abnormality, you might need to get more testing to follow you over time because you may be at higher than average risk. Or, if you're living with metastatic breast cancer, additional tests may be recommended to monitor your situation and your response to treatment.

Third tip: Find the healthcare providers who best fit your needs. You want to have your primary care provider be your ally and help facilitate care after active treatment. Your provider may oversee your generalized care after treatment. Most people don't just have breast cancer going on – you've got a lot of other stuff happening in your life. You've got other people in your family, you've got others, they have their situations. Your primary care is like the person who could have the best full picture of what's going on. You'll probably be receiving at least some of your follow-up care from an oncology team, especially if you're going to be taking ongoing medicines like endocrine therapy or the anti-estrogen hormonal therapies. If any of the healthcare providers you saw during active treatment no longer seem right for you, do your research and weigh the pros and cons of finding someone new. Check that person out before you make the switch, and it's going to take some work just to transition so that person really knows you well, even though they weren't involved in your initial active care.

Number four: Look into cancer survivorship programs and clinics that you can access. All oncologists see patients after their initial treatment for follow-up care, but some centers have a team that specializes in follow-up care, which could be a resource to you. These programs and clinics may have the staff, expertise, and other resources to address a wide range of post-treatment needs. They may be able to help you with treatment side effects, work with you to develop an individualized survivorship care plan, refer you to specialists, coordinate your care among different providers, recommend ways to improve your overall health, and more. For example, if you're on endocrine therapy, you have to be mindful of your bone health just because you're getting older, but also you're on a medicine that may get in the way of your bones staying as healthy, so you want to have a plan for that as an example.

Let's go onto the next tip, tip five. You want to get free assistance with survivorship care navigation whenever possible. If you're having trouble getting adequate survivorship care or confused about next steps, you can get free help in English or Spanish over the phone from CancerCare or FindHelp.org, which is a free zip code-based resource, it's a nonprofit. These are nonprofit organizations that have professional resource navigators, particularly cancer care, they [have] navigators and oncology social workers who can help you access cancer survivorship care and find resources in your community.

Number six: Seek help for treatment side effects and mental health concerns. For most treatment-related side effects, there are therapies or other strategies or interventions that can be helpful. Even little steps can go a long way. You want to talk to your providers about any side effects you may be experiencing, such as pain, fatigue. Cognitive problems – problems thinking and concentrating. Neuropathy, like tingling, pain, numbness in your hands and your feet. Lymphedema can be of the breast, chest wall area, and arm. Loss of libido, common problem, issues within intimacy. Depression, anxiety, feeling alone out there, because going through breast cancer can be a lonely process, and then we had isolation through the pandemic. You may have trouble sleeping and your overall sense of well being may be just upside down and bumpy, so you want to reach out and get help with those things.

Number seven: Make healthy lifestyle choices whenever possible. Not only can it help you recover from treatment and regain your energy and strength, but in some cases it can lower your risk of cancer recurrence or developing a second cancer. You can't make healthy steps all at once, but you want to start with the steps that we know help people feel better and help improve their overall health besides their breast health, like getting to and sticking to a healthy weight, exercising regularly, eating Mediterranean diet like mostly plant-based, limiting alcohol use, stopping smoking – getting help with that if you need it – sharing your life, getting a good night's sleep as examples.

Number eight: Consider joining a clinical trial. Clinical trials are carefully designed research studies that test how well new medical or behavioral interventions work in people. Some trials address issues that may be of interest to you after completing active treatment. For example, there are trials focused on reducing the risk of breast cancer, recurrence, easing treatment side effects, making it easier to stick with hormonal therapy. Other trials are looking at ways to help people get more exercise or access therapies for anxiety and depression. Some people like the extra care monitoring they might receive during a clinical trial as well as the fact that they can try a new therapy or intervention at little or no cost. And also by your participating in a clinical trial, you're helping the next person have an easier experience. Just like all the people behind you, they helped you bring all these advances and options, making them available to you through clinical trial participation.

Tip number nine: Get financial support. As we learned in last year's special report on cost of care, some may be – many of you in fact – may be struggling with all those out-of-pocket healthcare costs, health insurance problems, cutbacks at work, having access to disability benefits after your treatment's over. These are resources available. There are resources out there that can really be helpful. For example, you could receive free one-on-one financial navigation, assistance from financial navigators or social workers at your cancer center or from national nonprofits such as Triage Cancer or The Pink Fund.

And the final tip is: Support better survivorship policies. The National Coalition for Cancer Survivorship is a nonprofit organization that represents cancer patients and survivors and works with legislators and policymakers to advocate for better care, consider getting involved with an organization like theirs.

As a reminder, all of this information and much more is available at Breastcancer.org, and it's been made possible by so many of you who've been generous through your donations. We are very grateful. Thank you.

Now it's my pleasure to introduce our amazing moderator for our panel discussions, Loriana Hernandez-Aldama. Loriana is an award-winning journalist, author, two-time cancer survivor, patient advocate, and the founder of Armor Up for Life, a nonprofit patient advocacy group. Loriana has generously and graciously hosted webinars for Breastcancer.org in the past, and we're thrilled to have her join us again. Welcome, Loriana. It's so good to see you again. Thank you.

And before you kick off the panel conversation, I just wanted to ask you a few questions about your survivorship journey. And you've been generous to share your own personal experience, on the very day you were celebrating five years cancer-free after acute myeloid leukemia, I understand that it was then that you learned you had a breast cancer diagnosis. What advice would you give someone just getting a diagnosis?

Loriana Hernandez-Aldama: Well, first for me having it as a secondary cancer, I was shocked. I was grateful because I know there's so many advances, so many more in the breast cancer space, and I was grateful to be able to really fight for my life at home compared to being in the hospital for an entire year with leukemia.

But I will say that there are a number of things that I'll try to give the tips out quickly. I always say to patients that you have to wave the flag and ask for help. I know it's so hard. People like me, we're extroverts when you hit rock bottom, I have no problem asking for help. You can do this alone if you have to, but it's so much more successful if you have a team, a pit crew. Second, I say be an equal partner in your own success. You have to advocate, push for – just demand answers, and ask why things are going. We know we've talked about the voids in the system. You have to advocate and be your own hero. Then understand you have to chase the scans. This was so hard after leukemia when I wanted chemo right in my veins: "Get it out of me!", and they said, "No, you have to chase the scans. It takes time."

I also learned about the power of prehab; that the more fit you go into it, the more mobile, mobility matters, the better your outcomes are. And there's actually studies to say that being fit can improve your outcome. The other thing, build a care team. Unfortunately, when you hear that 80% of cancer patients get their care at a community center, they may not have access to a whole care team that's already built for them instead of a larger institution. But we've talked about – you need the breast oncologist, the surgical oncologist, the plastic surgeon, the radiation oncologist, the cardio oncologist, the plastic surgeon. So there's a whole group that you need to build for yourself. And lastly, in survivorship, never let your guard down. It's great to skip away and say, "I'm in remission, or I don't have cancer anymore." But you can't say, "Well, I'm not going back for the follow-up scan. I'm not going back for this because it was so triggering." Because recurrences can happen, but the sooner we catch it, the better off we are.

Dr. Marisa Weiss: Right. I went through breast cancer myself 14 years ago and I had the best care possible, but there were still gaps, big gaps. And also one of the things is it's so easy to disappear and try to put the whole thing behind you in the rearview mirror, but as you say, even though that's sort of like what we would prefer to do, this remains a long-term health concern. And we do need to be smart about how to stay healthy. I mean, you put yourself through so much to get to a healthier place. It still requires ongoing work to be as healthy as you can be, and we all know that.

Now, Loriana, did you have a survivorship care plan from your doctor?

Loriana Hernandez-Aldama: I really didn't, and I'm an advocate. I also had moved about a year after my breast cancer. I went through it through the pandemic. I didn't have, and I had to ask, “What are the next steps? What do I need to do?” Especially, I heard Amanda's quote about the primary care physician. I go to a primary care, they don't know what to do with me, especially with leukemia and then breast cancer. Then I would go back to the oncologist and they're saying, "Where's your primary care?" And I was being tossed around, and still to this day, it's confusing – do you get the scan? One doctor said after a double mastectomy, “Get a mammogram.” Another doctor said, “There's no mammo to gram.” So I'm still unclear about the path forward. I just know that I'm just going to keep being a pain in the neck and asking a lot of questions because that's all I know. But I love that we're talking about a plan because I need one too.

Dr. Marisa Weiss: Well, thank you. And we all need to, even if you have a plan, you need to revise your plan and tweak it, because who knows what's going to happen in your life. My mother had a mastectomy at 75, no reconstruction. She was widowed at 83. She met a guy online. He was 89, she was 83, and they had this great life. She had no idea that that was coming. So she had to revise her plan and keep preparing to live longer, and now she's 94 and publishing a book about her life and all that, but you just don't know what's coming. So you definitely want to tweak it, revise it, and this is a great opportunity today. I'm going to hand it over to you now to help get us smarter about how we can be as healthy as possible.

Loriana Hernandez-Aldama: Well, first I want to say thank you for all the work that you guys are doing at Breastcancer.org. You're amazing and you're an inspiration. So to be here on this stage, per se, with you is a true honor. So thank you, Dr. Weiss. Thank you. I'm sorry I didn't meet you in person when I lived in Philly. Next time, definitely.

Dr. Marisa Weiss: Definitely.

Loriana Hernandez-Aldama: It is my honor now to introduce our first panel, Dr. Hoda Badr, who is a research leader in the area of cancer survivorship. And as Dr. Weiss said, leading innovative studies on optimal post-cancer treatment. Also, Dr. Evelyn Robles-Rodriguez, and also Dr. Erin Roesch, who is a breast medical oncologist at Cleveland Clinic Taussig Cancer Institute specializing in breast cancer treatment and various forms of therapy.

So welcome everyone. Thank you for all being here.

Dr. Hoda Badr: Thank you.

Loriana Hernandez-Aldama: And hopefully, your mics are all on. As Dr. Weiss and Dr. Chino shared, the Breastcancer.org special report explores the challenges that patients have with accessing a follow-up care plan to really meet their needs and get adequate help with late and long-term effects. So please explain what each in your opinion are the biggest challenges are in this phase after active treatment?

Dr. Hoda Badr: Well, I guess I can go ahead and start if that's okay with the other panelists. So it's a pleasure to be here today with all of you. And I think breast cancer survivors' experiences, you've already heard a myriad of challenges with regard to accessing follow-up care after cancer treatment. So an example of one of those challenges would simply be just a lack of awareness. So many survivors can be unaware of the potential late and long-term side effects that they might experience after treatment, and this can really make it difficult then for them to identify problems and to seek help. I think that understanding what is and isn't normal after cancer treatment is a conversation that every woman needs to have with her oncologist. But bottom line, if you don't feel okay, if you don't feel normal, then you need to have that conversation and you need to seek help.

Beyond that, I think it's also important to keep in mind that just because something is a normal side effect that a woman experiences after breast cancer treatment, it doesn't mean that you just have to grin and bear it. So there are pharmaceutical, there are behavioral, and psychosocial interventions that exist that can help you to control or minimize those normal side effects so you can have a better quality of life, and it's important to discuss those issues with your doctor. I also want to say that I think it's very important for survivors to know that it's okay to consult Dr. Google and WebMD sometimes as sources just to learn more about those late effects of treatment and long-term side effects. So when you go speak to your doctor, you have some information, you have a list of things that you might want to ask them about.

Loriana Hernandez-Aldama: I like how you mentioned to bring up the normal side effects because I was just talking to a patient yesterday who she said, “I'm not even going to bother bringing it up. I just go in and get screened, see my doctor because what is he going to do about it? I have no choice.” So I'm glad you brought that up.

Dr. Roesch, what's your opinion on the biggest challenges in this phase?

Dr. Erin Roesch: Yeah, so again, thank you for the opportunity. I'm delighted to be present and to speak on this issue. I think that to echo really everything that's been said and to go back to the first quote by Amanda. I think highlights it perfectly, really. I mean, that is what so many of my patients come to me and say after the active treatment phase is, “Where do I go? What do I tell you about?” And so, I completely agree. I think that's an important conversation to have from the get-go and to really explain to my patients, this is what to contact me about and I personally always encourage people to reach out to me, and if it's not me or I don't know the answer, I will help find it for you or I will help direct you to who you need to go see to help.

But I think that the fear of recurrence, the psychosocial aspect of the ongoing management in the survivorship setting, I think is a real, real issue that sometimes goes under-addressed. So I think that's really important to highlight. And then for me, a lot of my patients on active endocrine therapy in the survivorship setting, I would still consider that part of this. And I think that dealing with some of the physical aspects of that that's been highlighted here as well, including sexual health, depression, hot flashes, vasomotor symptoms, these are all real ongoing issues for our patients. And again, I think that one of the things that I really try and stress to my patients is open dialogue and really to try and let me know what's going on so we can help. And then I think again, communication with a primary care doctor and formulating these survivorship care plans, I think are so integral to the ongoing care and management for our patients after active treatment.

Loriana Hernandez-Aldama: I love so much of what you were saying. The communication with the primary care – the struggle I have is I feel like they need some more training, because a lot of the times they don't know what to do with us and that's why they send us back. And you talked about the mental health. I've been very transparent about my severe PTSD, about fears of recurrence, and my depression, but a lot of patients like me say when you go in and you talk about that, and then you're also mentioning pain that it tends to be like, "Oh, this is your PTSD talking. This is your anxiety talking." It's like, "No, I'm really in pain and do I need a scan about this back pain?" So, I'm glad you brought that up.

Dr. Robles-Rodriguez, can you weigh in on this, on the biggest challenges?

Dr. Evelyn Robles-Rodríguez: I think what I see a lot in my patients is that emotional distress that you're talking about. The fact that all of a sudden they've gone from seeing their oncology team very frequently, to all of a sudden feeling abandoned like, "What is next?" Not knowing what's going to happen next, who they're going to be seeing, who's going to be managing their care, and really having a lot of issues dealing with that new normal that often comes with that after treatment. I had a patient the other day who was in tears and she said, "I didn't know that I was never going to go back to my normal, but I expected to be my normal." And here she has family members and work buddies saying, "Hey, why aren't you back to what you used to be?" So dealing with now, the impact of the diagnosis, the treatment, the repercussions of the late and long-term effects, trying to deal with going back as much as possible to what life used to be like. And at the same time dealing with the fact that it may not be what it used to be like, your roles may change. How you feel may change psychologically, how you feel physically may change, and how do you deal with all those issues while at the same time trying to go back to what you used to be?

Loriana Hernandez-Aldama: Yeah, I would say you're in a mind and body you don't even recognize. When you wake up, in some cases, you have no nipples, you look a wreck, you don't feel right. Sex – I say that that's the darkest secret of surviving cancer, telling you how that will impact your marriage. Your mind's not the same from the chemo. So trying to pivot and go back to work, then you deal with the mounting bills and it, it makes me out of breath just saying this. I know when you talk about this level of distress and it's so hard for patients to ask for help, and I'm glad we're having this discussion.

But Dr. Roesch, I want to go back to you. What do you do if you're still in active treatment to prepare for this when you start to have some of this psychosocial impact? And there are some research that even says even five to six years later is when the depression gets worse. But once you finish active treatment, how do you prepare for that when you're starting to feel kind of like you're choking and, "I need a plan, I need some sort of sense of control here."

Dr. Erin Roesch: Yeah, I think it's a great question and I think that to that word “plan” and really to develop a care plan and what to expect with your care team. This is where I'll sit down with my patients and describe...a common question I will get as patients are finishing chemotherapy is, "When will I get back to that new normal? How long is it going to take? What will get better quickly and what might linger? What might I be dealing with for several months or even years?" And so I think having that honest, open discussion about that so that my patients can appreciate and better understand what to expect so they're not a couple months later wondering why they can't do their exercises as often or as strenuous exercises they used to do before their diagnosis. So I think again, that open honest discussion, transparent discussion about what to expect and what might be short-term improvement, and then what might take longer. I think that's really, really important.

And I think a great point that was brought up also is the psychosocial impact and when that can arise and when that can be more prominent for my patients. I think that oftentimes I'll see patients come back in a year, couple years later, and they'll be done with their treatment and they often will wonder, “Well, why am I now starting to worry? Why am I more sad now than I was when I was going through chemo?” And I think that to the point that was brought up earlier, the fact that people [need] to understand that that's normal, to experience that later on, and that it's okay to ask for that help at any point along this process. And so I'll often tell my patients that seeing one of our breast psychologists, talking about mental health concerns, is extremely important along the way and oftentimes tends to be things are more noticeable even after active treatment.

Loriana Hernandez-Aldama: Yes, mine has progressively gotten worse, and I understand. I even had a doctor one time tell me, obviously not this group, who actually said to me, “Just try forgetting you had cancer.” And I'm like, "When I look in the mirror and my feet are on fire and I have no nipples, I don't forget I had cancer." And a lot of times people also say, "Well, if it's normal to be depressed because you're going through so much, then maybe you don't need treatment because everybody's depressed going through it." But I'm glad you brought that up because we do need to ask for help.

Dr. Badr and Dr. Robles-Rodriguez, can you both weigh in on this, on how to get that care team together and what resources to start looking at, too?

Dr. Hoda Badr: Yeah, absolutely. So I think that it's very important to have that conversation with your oncologist during any routine follow-up visits. If you're feeling anxiety, depression, PTSD symptoms. Look, number one, as the previous panelists mentioned, look for a specialist, a psychologist to speak to, but also look for other breast cancer survivors. It's so important to connect with other survivors who have gone through this, who are feeling the same things, who can help you to normalize the symptoms that you're experiencing and so that you know you're not alone and to provide you with that social support is so, so critical. I also think that it's really important to give yourself grace. There are going to be good days and there are going to be bad days. And when there are bad days, you seek out the support that you need. And when there are good days, you cherish those good days, and it's okay. And it's not always linear that it's going to keep going up the hill better and better. Sometimes you'll be doing just fine and then there will be a dip, and that's okay. And as long as you have the right team in place around you – friends, family, other people to support you – you can get through it and get over that hurdle.

Loriana Hernandez-Aldama: Yeah, the support system, I mean, I always say we're all in this together and we have to truly wave the flag and ask for help.

Dr. Robles-Rodriguez, what do you say about somebody who maybe they had one team during their active treatment and then they're either moving or they want to switch into what they're going to do for their survivorship care plan. Do you think that's okay, or do you have other recommendations?

Dr. Evelyn Robles-Rodríguez: I think that that is an issue that is more difficult for the patient. Kind of like moving away from that team that was there for you from the beginning that was seeing you so frequently, to all of a sudden being told, "Hey, this team now has to focus on other patients who have active cancer and active treatment, and we're going to move you to someone else who can support that survivorship phase of your cancer." It's a traumatic break, right? Having to leave that known team to now someone who maybe you've never seen at any point during your previous cancer journey, and who you feel may not have been a part of that experience. I will tell you that that's what I do. So, I specifically see patients who are transferring to that long-term survivorship care, and what I always reassure my patients is that I am still part of that team and their old team members are still part of the team.

So we're not losing any team member. We still have open communication with the old team members and continue to just focus on the well-being now of the patient rather than that sick model of cancer treatment. So we're no longer focusing on the illness, we're focusing on you as a patient, ensuring that we address the needs, including: is there any chance that there is a new recurrence? Is there a chance that there's a new cancer? Are you getting all of your screening and your preventive studies that you should be getting? And are you focusing on health and well-being? Are you exercising? Are you eating well? Are you focused on weight loss, if that's something you need to do? Do you need to stop smoking if you never stopped during your cancer journey? So, there's a lot of ways of focusing and ensuring that that transition happens in a way where the patient feels comfortable, that that new team member, if they never met them before, still knows them well and is still going to focus on ensuring that they continue well during their cancer journey.

Loriana Hernandez-Aldama: Well, that weight loss is hard when you're on the hormone therapy.

Dr. Evelyn Robles-Rodríguez: Yes, it is.

Loriana Hernandez-Aldama: That part I do not like about it. I am in a different body, for sure. Also, I love that you have that role, but again, when you look at the numbers and 80% of oncology patients get their care at community centers, Dr. Roesch, what do you make of this – of not everyone's going to have access to people like you?

Dr. Erin Roesch: Yeah. So I think, and I'm very fortunate, I work with a wonderful team and I have the, again, that privilege really of working closely with a medical breast specialist who oftentimes will see my patients, or our patients, in follow-up after they're done with active treatment and alternate visits with us. I also work with amazing nurse practitioners, advanced practice providers who really spearhead the survivorship program and help develop these survivorship care plans for patients. So I'm fortunate for that. But no, I think that the reality is that not every system will have these things in place that are helpful for patients. So I think one of the important things is to look at and to know what is available at your institution. And that's a question you can ask your oncologist. You can ask your nurse practitioner that you're seeing, “What is available to me?” And I think that's to the being an advocate for your own health and knowing what's out there and asking the questions that will hopefully provide those answers for you. Because different systems, as mentioned, work differently and have different resources. And so, I think it's important just to know what's there and then how that can be accessed for patients. And if you need something beyond that, I would be hopeful that your care team could refer beyond or try and find that help for you.

Loriana Hernandez-Aldama: Yes, I say sometimes you have to build your own pit crew. Last question, we're running out of time, Dr. Badr, I want to end with you talking about the metastatic breast cancer patients. We talk about the survivorship care plans. It seems to be aimed at people who had early stage and for metastatic breast cancer patients, they're always in active treatment. How can they still ask about these survivorship care plans?

Dr. Hoda Badr: Absolutely. So, I think particularly in breast cancer, given the advances in treatment, women are surviving longer even with metastatic disease. And so really when you think about survivorship care for women with metastatic breast cancer, it's really focused on managing the disease and its treatment-related side effects while maintaining quality of life. So there are a number of aspects of survivorship care for women with metastatic breast cancer. These can include things such as ongoing monitoring and treatment in order to control the spread of the disease and to maximize the quality of life. This is done by the oncologist, but then also there are other providers who can be involved in care. So palliative care and symptom management here, the focus is really on pain management and addressing fatigue, nausea, sleep problems, as well as any issues related to functional well-being. So you may have a palliative care specialist on your team.

Psychosocial support continues during this phase of the cancer journey, and then also lifestyle and self-care. And this is where I think really the primary care physician still has a role to play. Sometimes people think that just because they have metastatic disease that now it's all about the oncologist and the primary care provider doesn't really have a role. I think really the main difference about survivorship care in the context of metastatic disease is that it really is an oncology-led model. And the PCP's role is primarily on focusing on coordinating non-cancer-related health issues. But they still are critical because so many people have comorbid conditions, diabetes, hypertension, and other things that still need managing, even though maybe psychologically people's focus becomes on their cancer.

Loriana Hernandez-Aldama: I think psychological impact is the common denominator of this great conversation. You all are amazing. Thank you so much, Dr. Badr, Dr. Roesch, and Dr. Robles-Rodriguez for joining us. Thank you again.

I want to remind everyone watching to please post your follow-up care questions in the Q&A for the doctors to answer. And again, grateful for all the work that you all three are doing.

I want to move on to the next panel. Breastcancer.org special report, if you haven't had a chance to look at it, it is amazing. It includes stories and perspectives of women who have dealt with their own struggles who we're going to meet related to receiving adequate or inadequate follow-up care. They shared how these challenges have impacted their lives and what they've learned that can really help others. And that's what I say, we're all in this together.

We can help each other. And several of the women we're so blessed to have them here with us today on our next panel. So now I'd like to introduce to you Megan-Claire Chase, a seven-year stage II breast cancer survivor. Welcome! Amanda Helms, a young adult breast cancer survivor, and also an advocate. You're all advocates. And Kate Rosenblum cancer survivor who finished treatment in 2023 of spring. Congrats on that. And you are familiar because you were a caregiver to your wife when she had it. So thank you all. So happy to have you here. And I want to start with saying that in that special report, it said 66% said their oncologists either didn't communicate with any of their other healthcare providers about their plans for their survivorship or that they didn't know that the communication was even taking place. So what do you each have to say about that?

Megan-Claire Chase: I guess I'll kick it off. I was so intrigued by that question. I was like, gosh, did I, because it's been a hot minute, seven years. Well, I found mine and it was two pages, a page that just listed what my diagnosis was, and then another page of potential side effects. There was no, "Hey, here's some next steps for you, or here's what happened, a recap of the multitude of side effects that I experienced," and I realized there was no help for next steps. I felt very much like I was thrown out into the middle of the ocean and I was searching for the life jacket. And I just recall feeling so safe through active treatment. And then when it was time for, "Okay, we kept you alive, I [have to] go work on other people," I felt then I felt like a number.

Loriana Hernandez-Aldama: Yes, I think your powerful quote, I had to write it down when I was reading the report. You said, "We did our job because you're not dead. Now, we're going to move on to the next person." And I think we've all felt like that. And you keep saying, "Well, what is the plan?" And when you talk about, "What happened to me, what was my treatment?" Also, I learned even from leukemia, "How much radiation did I have, how much full body radiation?," which they say led to my breast cancer. We need to know what did we have so we can share it so we can share with our other providers what kind of risk we're facing.

So I want to go to Amanda next, and then Kate, I'll have you jump in next.

Amanda Helms: Hi. So yes, I did have a survivorship care plan and it actually came in pretty handy. Mine was also probably only about two pages, but my medical record was a little bit strange. My initial pathology came back at like 80% estrogen positive, but then when they did my mastectomy two days later, it was below 10%. So I'm now considered low estrogen positive or triple negative. It kind of just depends on which doctor you talk to. And so when I moved, I had at least that paper because almost every time I went to a new provider, they saw the estrogen. And then that completely changes things like I'm eligible for things that people who are PR positive are not eligible for. And so when I moved –  military spouse, we move a lot – from a kind of a rural place, which is where I did all of my active treatment, I was probably less than six months out of active treatment. And it was really useful to me in looking for a new doctor and providing things. Survivors see, I probably see six or seven different doctors now just from all of the random side effects of things that kind of reveal themselves over time. So not only in finding an oncologist but in primary care and rheumatology and all of these other things that you might encounter, even your dentist, things you don't even think about are impacted. And so it's nice to at least have that piece of paper. Especially for someone like me, it's very odd. I work in oncology now. I work for a professional organization on clinical guidelines, which is extremely rewarding and not triggering at all for me. But when I go to a medical office, I freeze. And so it's nice to be able to have a piece of paper to hand to someone so that I'm not going to burst into tears and or start sweating profusely and having a panic attack. I can just say, "Yeah, here, this is what was wrong with me, help."

Loriana Hernandez-Aldama: Did anyone mention, well, Kate, I'm going to let you go and then I'll talk about the recurrence risk.

Kate Rosenblum: Sure, absolutely. Well, it's wonderful to hear all of the stories and all the information. Thanks for having me here. I was reflecting on this question as well, and I was thinking maybe there's a written plan somewhere. I just don't know it!

Loriana Hernandez-Aldama: It will reveal itself!

Kate Rosenblum: It will reveal itself. But what I will say is actually I had a really wonderful conversation with my provider when treatment ended, and I was very grateful for that, that she took the time to really talk with me about active treatment ending, and she even anticipated some of the feelings that might come up about that. I was very grateful for it. We did talk about how I would be monitored and how frequently we would meet and about referrals that might be helpful. And so I think I'm an example maybe of an experience that I would wish for everyone and maybe I don't know that I would've known to ask for it, but I kind of hope that as people are listening to all the things that people are sharing, that they have a better sense even of what to ask for because it really was helpful to have that. I will say, I don't know if you'll have us talk about this, that having a survivorship plan where they acknowledge feelings does not mean no feelings. So the challenges still come up, but I am grateful for having good care team who thinks about the sort of care after treatment, active treatment ends. And I should also add, I'm only a few months into that experience.

Loriana Hernandez-Aldama: And congratulations. When you say grateful too, I know we're all grateful, but I always point out to people I'm grateful, but we still have the right to demand a better quality of life.

That "QOL", when I say QOL, when I first learned about when I started to advocate for Quality of Life, I'm like, you mean my muscle atrophy, my bone loss, my burning feet, my secondary... Let me go through the list and you're saying that's three letters? Let's talk about this because I didn't know, oh, I need a cardio oncologist. I'm at risk from all the chemo of a pulmonary embolism. Oh, my bone is thinning from the hormone therapy. I need to see a dentist more. I need to get an MRI, see what else may be wrong with my back? So like you said, you need to build a team of people. The neurologist I recently tried to see, I waited 11 months to see him at a large institution. He just left the industry, and now I have to wait a year and a half to see the next one. So we have to do better. I mean, it's frustrating.

But let's talk about the risk of recurrence that we all probably lose sleep over. Megan-Claire, do you want to jump in, has anyone addressed that with you or talk to you about it?

Megan-Claire Chase: Sure. So being diagnosed with stage IIA invasive lobular, I was told that I would be monitored for 10 years because I was also diagnosed under 40. So that means I was part of the Adolescent and Young Adult community, AYA. And so I was told, especially my tumor was large, we had to really throw the motherload of chemo, which is what I was told. And then the radiation and multiple surgeries that because of all that, because of my age, I would be monitored for 10 years and that I would potentially have a 30% risk of recurrence. But for me, my mother was an ovarian cancer survivor, and because of that, I was already having all those other issues. That stuff didn't stop, so to speak. And I was told, "Hey, you need to get on these certain medications to try and help prevent a recurrence." But the thing is, my body rejected it. It was intolerant. I had rare side effects. And I remember my oncologist, who I had treasured all that time, and she was like, "Yeah, just get off it and then get back on it. Get off it for two weeks and then get back on it." And I was just like, I don't know what part of no that is affecting my quality of life. The pain was so debilitating that I actually could not walk. It felt like fire ants were crawling all over me and I had rashes and I was like, "I can't be on this for 10 years to try and help prevent a recurrence." And it was just very frustrating. And I ultimately divorced her and I've never been married, but darn it, that divorce hurt and I said it to her face and I said, "I divorce you. I said, thank you so much for getting me here. I am grateful that you got me here, but you're not actively participating in my quality of life so we can help prevent a recurrence." I ultimately left that cancer center and I do feel lucky that I live in a big city. I'm in Atlanta.

Loriana Hernandez-Aldama: I'm in Atlanta too.

Megan-Claire Chase: Oh, get out! We need to do lunch.

Loriana Hernandez-Aldama: Yeah, I'll come see you.

Megan-Claire Chase: For real! But it's like I went to a different cancer center. I was like, but it was hard. I'm a vocal person, but even the most vocal person can have trouble and just, it's a lot going on to speak up in the moment.

Loriana Hernandez-Aldama: Well, you need shared decision making and that's a big deal that whether someone agrees with it or not, it's your body, it's your choice. When you're talking about this without mentioning names of drugs, you're talking about the hormone replacement – the hormone therapy.

Megan-Claire Chase: Yeah. I wasn't sure if I could mention.

Loriana Hernandez-Aldama: That. I don't know if we can, but I'll say that.

Megan-Claire Chase: I just kept it vague.

Loriana Hernandez-Aldama: Aromatase inhibitors.

Megan-Claire Chase: Yes, yes.

Loriana Hernandez-Aldama: Yes. So what was too hard on you, Amanda, did anyone talk to you about the risk of recurrence?

Amanda Helms: Well, that's kind of a convoluted story. So my initial treatment was at a community practice in rural North Carolina, and then now I live outside of Washington, DC, so my care is very different here. The first time I feel that I got accurate information about my actual risk of recurrence was when I switched – I'm at Inova Schar now, I love the entire cancer center, they're great. The doctor, Dr. Harnden, my oncologist now, and she was the first person who sat down and outlined what my actual risk of recurrence was, kind of in a tree. So on one side, it was, if your cancer behaves more like an estrogen-positive cancer, this is your risk. But if she feels it's more closely related to triple negative, then this is kind of the risk. And then me being very factual – I was a librarian and now I work doing some research for oncology things – I just needed a number. I needed a number. Desperately, that's what I needed was someone to just say it because pretty much every other consult I'd had, you get the 30% – but the 30% lumps all of us together. And it doesn't differentiate for young people because there is no data. There's very little data on young people, and if you're a young woman of color, it's even worse. So I guess what I focus on with as far as the research is that we just aren't represented. If you're under 40, we know that women under 40 are getting diagnosed with breast cancer more and more and more. We know that we're more likely to die from it, but we're not in the research and it just doesn't make sense. It's not logical. So for me, as far as recurrence risk, it's hard to even know because if you look at clinical trials, very few include people under 40. Very few guidelines include women under 40, almost none.

Loriana Hernandez-Aldama: Yeah, that whole thing of recurrence, I don't know about any of you, but it keeps me up at night if all of a sudden my arm hurts or my back hurts, it can't be, "I worked out too hard, or did too much hot yoga," it's, "All of a sudden I have a lesion," and then I start to panic.

Megan-Claire Chase: You go down the rabbit hole.

Loriana Hernandez-Aldama: You go down the rabbit hole. By the way, I have an amazing breast oncologist in Atlanta, Kevin Kalinsky. Love that man. Amazing. One quick little sidebar about the recurrence. I'm now working with researchers at Rice University. They're studying breast cancer survivors and putting them in therapeutic yoga, studying their cortisol levels and realizing that when the cortisol levels are lower, we're not producing inflammation. We know inflammation's like a fertilizer to cancer. When they're lower, they actually can reduce the risk of recurrence. So some powerful information, I can't wait when the study is done and I can share it, but just something to think about as we talk about recurrence, that lowering our cortisol levels, lowering our stress levels, because that plays a huge role as well as it's laying the foundation for cancer. I sidebarred, and I apologize to all of you.

I do want to say when I was reading the special report, and I want to get all of your reactions, there was a quote from a doctor that said, "Survivorship care is not that complicated. Just two visits is all you need." I had to write down the quote because I knew of everyone, especially Megan-Claire, I've been reading up on you. I was like, that was the quote. So share with me your reaction.

Megan-Claire Chase: Are you kidding? What?! I mean, and this is one of the main issues here, right? It seems like a lot of us, there is no proper handoff. Once I went and found a new oncologist and then he ultimately retired, he was so fantastic, and then I was moved to another one, he just dropped. He just dropped me. There was no conversation. And I called and he was like, "Yeah, you're too healthy now. I don't need to see you to see your PCP." And I'm like, "Well, are you at least going to have a conversation with my primary care provider? What should they be looking out for? What tests should we be doing? How will they know when to send me back to you?" And there was none of that had. And so I mean, just hearing that, I am livid with that doctor and that's part of the problem. And then you consider also as a person of color, I already have a hard enough time to be believed when I say I have pain or I'm feeling something, then to know that –

Loriana Hernandez-Aldama: "It's your anxiety talking."

Megan-Claire Chase: Right? And to know that we still have doctors like that, but my big thing is, it's bad enough we all don't automatically get a survivorship plan, like a real survivorship plan with referrals and next steps that is pertained to us, not just vague, broad things, but then there's no standard, there's no proper handoff from the oncologist and at least have the common courtesy to tell the patient and not just drop them. I am still not over it. And it's actually caused PTSD that I don't even have a current oncologist right now because I'm like, what if they say that to me again, that I don't matter because I'm not dying at this moment?

Loriana Hernandez-Aldama: Dr. Kevin Kalinsky, I'll connect you. He listens and listens to my anxiety and PTSD all day long, and he is very patient, love him. Not here to promote everybody, but since we're in the Atlanta area.

Do either one of you want to chime in on that before I go to my next question for you? It takes more than two appointments.

Kate Rosenblum: Honestly, I think Megan kind of summarized it!

Loriana Hernandez-Aldama: I think she covered it.

Here's the question we did get in from some of the people on is, "Could the current panelists please share what referrals they had that they are glad they had, the ones that they did not and wish they had?"

Amanda Helms: Oh, I'm happy to share about that. So I am a big believer. I left treatment and was just completely traumatized. And I actually did message my provider, my oncology – I had a nurse navigator – and I asked for a referral to a therapist who might have worked with anyone who had had cancer. Young, old. I truly at this point did not care. I just needed someone because I was finding that, and I think this is really common with a lot of survivors, is that I was having trouble relating to my friends who had been my best friends for 10, 20 years. I needed a person who had either helped other people like me or who were like me. And so that's when I talked to newly diagnosed breast cancer patients, anybody who's going through trauma, because that's what cancer is, is you need to get into therapy like yesterday, the day before yesterday, and then you need to bring your family with you.

There's a great analogy about, I think it's like a lion and a refrigerator and the lion comes out of the refrigerator and attacks you, but then it doesn't just attack you. It attacks the whole family. And that's truly how cancer is. It's not just you. I had a three-year-old when I was diagnosed and her processing mommy doesn't have hair and all of this weirdness that comes with being a cancer patient. And then my spouse who had a 33-year-old healthy wife one day and then the next day he's a caregiver. He didn't ask for that. That's just kind of what happened. And so definitely that's the number one referral. And then after that, I would say that you should request a palliative care therapy. Palliative care is not the same thing as end-of-life care.

Loriana Hernandez-Aldama: When I first heard it, when they told me, I was like, I'm not going to palliative care. You could take that and –

Megan-Claire Chase: I thought it was hospice. I was like, "Am I dying and you didn't tell me?!"

Amanda Helms: Yeah, I actually was here in northern Virginia, the DC region when someone first mentioned it to me, because I do have chronic pain. And it's just kind of a bizarre side effect of, I'm guessing probably mostly the chemotherapy agents, but it really helped even just to have your pain validated. It's incredible just because I was very strong in my stance that I didn't want any type of narcotic long-term. I wanted more short-term solutions to get through acute pain and then how can we work to reduce inflammation. But just to have a doctor look at you and say, "I believe you. You're in pain. You're not making, this isn't like you're crazy. You're in chronic pain. And that's just the way it is."

Loriana Hernandez-Aldama: Kate, do you want to share about your referrals?

Kate Rosenblum: Sure. I think I kind of divide it into two things and I was thinking my body-based healing and then also my emotional sort of healing and they're totally connected, but the things that have been helpful to me kind of fall into those two categories. So I was thinking on the body side, more traditional things. I'm still seeing a PT because I have some issues with balance and that comes from the neuropathy and she helps also with lymphedema prevention. I have sort of a high risk for lymphedema, and I saw a PM&R, a physical medicine and rehab doc who specializes in cancer, who's also –

Loriana Hernandez-Aldama: Wait, say that acronym again?

Kate Rosenblum: It's PM&R. So he's a physical medicine and rehab doc, so like a rehabilitation doctor and he knows all about, he's at the cancer center that I go to, and he does exactly what you were just describing, Amanda. He takes the pain seriously. He knew both who to refer to, but also he had some medication to help with some of the pain that I was having that wasn't problematic. It was actually just a helpful med that I can safely take. And he also helps with some of the referrals for brain fog and medication to help with the brain fog. That's been a big issue, like cancer-related cognitive changes they call it. I call it not being able to focus, not being able to remember, and being totally foggy, but that's sort of the traditional body base. But then I'll say, I also saw an acupuncturist so helpful. So helpful and –

Loriana Hernandez-Aldama: So expensive though.

Kate Rosenblum: Yeah. Yes, it is often so expensive. At the hospital that I go to, they do have an acupuncturist who actually works in family medicine. And so I know some people have been able to work things out that way and also for massage.

But on the emotional support side, therapy – a hundred percent, absolutely, definitely, totally do that. But also I'll say, support groups. So Breastcancer.org has a support group that has been running virtually that I attended religiously through treatment and has also a group that meets after called Bonded by Breast Cancer, and that has been so helpful. I think there is nothing like talking to people who have been there, done that. They get it. You don't have to explain yourself. I feel someone talked about the loneliness of cancer. It might even have been you, Loriana. It is. It's lonely and other people don't necessarily get it. So it means –

Loriana Hernandez-Aldama: Well, people don't get you anymore. They don't. And I feel like I have to explain to my friends like, "No, I'm not that exciting. I already took enough risk in my life. I don't need to play survivor. I'm playing that every day." So some, I don't know, girls' trips, I don't want to go on. They're too scary to me. Or anyway, I'm just not that kind of risk taker. I'm not going to hang glide, but thank you. I think –

Megan-Claire Chase: I just have one other thing to add as far as for therapy, it's really important that you can – I like to call it – audition your therapist. So, when you're looking for a therapist, I was in therapy pre-cancer, right? Had those issues, but then post-cancer, I was like, wait, these are different. I don't have the coping skills that I need to handle this, and this is different than my previous cancer issues. And so I had to audition. I have a theater background, that's why I say that. Audition multiple therapists. And I realized, hey, I need someone that can specialize in those who are under 40, those who can understand chronic pain, things like that. And I didn't know that, but that was something I discovered just in my own journey of trying to get my mental health and emotional health in a better state. So I just want to make sure I said that out.

Loriana Hernandez-Aldama: No, I'm glad. I think the common denominator from all of us both panels is the mental health matters and it's so important. And there are so many studies that say when you're mentally in the game, your adherence goes up, you stay in the game, you can stay on the medication longer. It's a win-win. Outcomes go up.

So thank you all. Megan-Claire, Amanda, and Kate, thank you for joining us. Now I'm going to go to my questions and the panelists I'm told can all stay on for the questions. The first question that we received is, "How do I prevent a recurrence?" And the doctors are going to join for this Q&A. Okay. So the first question and jump in anyone, "How do I prevent a recurrence?"

Dr. Erin Roesch: Yeah, so I'll start. And again, I really want to thank all of the participants. Everyone's stories are really amazing and I think highlight the common themes, but also the unique nature of all of our patients. And those should always be addressed as we're caring for them. 

So I think that in terms of preventing a recurrence, any of the treatments that we recommend, as a medical oncologist, I obviously talk and discuss and prescribe chemotherapy, anti-estrogen or anti-hormonal therapies. And none of these are without side effects, as has been highlighted by many as well. So I think in my mind, sitting across from my patient talking to them, the medicines that I can give are certainly things that can help reduce the risk of a recurrence. But quality of life is obviously important and we need to focus on optimizing that to help people be adherent to treatment, or if something doesn't work for someone or someone's body isn't responding to it, to find something different or have that conversation at least and understand what we can do to help. I think also importantly, lifestyle, behavioral modifications, things that women can do or patients can do in terms of healthy eating, diet, regular exercise are certainly things that can – and studies have shown – can help further reduce risk of recurrence. So I always say, exercise is medicine, and I tell people that all the time.

Loriana Hernandez-Aldama: It certainly is. I'm a big advocate of prehab – prehabilitation. "So how often does breast cancer come back?" is the next question. If the surgeon takes as much as needed with the clear margins, why does breast cancer come back sometimes?

Dr. Marisa Weiss: Well, I think that most people with early-stage disease are cancer-free after their initial surgery, but we just don't know who each person is. For example, the way the metaphor that I find helpful is if you're in the kitchen, you drop a glass and you sweep up all the pieces and anything shiny with a broom and you throw it away. You probably got it all. But we usually, you grab the vacuum, vacuum up that area just in case there could be something there that you haven't seen. That's sort of the role for different treatments that work in different ways against the different cells that live in one cancer. And you just try to do the best you can at each point along the way to be as healthy as possible. All the treatment that you have, the whole purpose of that is to hope to get rid of the problem and never see it again. And ongoing care for people with metastatic disease, the goal there is to keep things under control so you can live your life in as comfortable way as possible. And then as each person was saying, you do the best you can in your everyday life to be as healthy as possible, trying to get to stick to a healthy weight, even though that's tough when you went through treatment and the treatment itself may have put pounds on, but you just try to head in the right direction.

As people were saying, getting physically active is, it turns out physical activity is the one thing that helps the most keep you on track for all other healthy lifestyle choices. The Mediterranean diet, mostly a vegetarian-based diet – all the fruits and vegetables, nuts, seeds, beans, grains, spices, different colors of the rainbow – limiting alcohol use, not smoking, getting good night's sleep, sharing your life so you're not socially isolated. And at Breastcancer.org, we have a lot of other information about what goes in on and around you in your everyday life, what you can do to be as healthy as possible, and making sure that the initial plan of treatment, let's say it's endocrine therapy, the hormonal therapies, that you're on it, you're taking the best agent for you, you're tolerating it well. If you've got any issues, go back to your oncologist and say, "Hey, we're not getting along so well. Are there any other medicines I could try instead? That would work just as well, but maybe with fewer side effects?" You also want to [do] things that protecting your bone health helps keep your bones strong, but also may reduce the risk of ever having it come back in the bones. So there's, you get a lot of extra credit for doing some of the same steps that are breast healthy, overall healthy, but you definitely need to tweak it over time working with your team.

Loriana Hernandez-Aldama: I'm going to go take some more D3 after hearing that comment, but –

Dr. Fumiko Chino: Can I just add, I apologize, just a little bit? I think that what I always try to counsel patients is that everything has risks and everything has benefits. So we just want to make sure that the benefits of any kind of treatment regimen or lifestyle change are going to exceed the risks. Because again, we're just trying to get the balance right. So I've had people really have intolerable side effects for what is a pretty small benefit. And so in those situations, we have to seriously consider: what are we getting you for what we're putting you through, because we really only want to do things for people, not just to them. And that's again, feeling like your treatment team is understanding that is really prioritizing the "you." All of you is so important.

Megan-Claire Chase: I'm sorry, I just had to add really quick. As we think about pain, many of us have pain that we were not expecting. And so when we hear that you need to exercise and move, that feels really overwhelming because no one is actually telling us how do we do that. So we can tell our brains, "Hey, though, this is painful, you're not actually hurting yourself." And so, I just wanted to share that. I've realized that you don't have to do 30 minutes consecutively of movement. So I call 'em "exercise snacks." I went out in between a meeting today for five minutes and I was like, that counts as some sort of movement and to try and build up because I deal with a lot of pain, like I'm in pain right now and it can be just really hard. So when patients and survivors hear that, sometimes it could be hard because no one's telling us how to move safely.

Loriana Hernandez-Aldama: The other question: "Are there more recurrences between having a lumpectomy or a double mastectomy?" Because with the lumpectomy you may get more radiation and then the double mastectomy... Is there – I'm sure there's no clear-cut answer, but I'd love your take on this, Dr. Weiss or –

Dr. Fumiko Chino: I am happy to answer that. So the evidence would support that there's not an increased risk for breast-conserving therapy, which is a lumpectomy plus radiation versus mastectomy. Of course, there are differences for each individual. So we want to make sure that we have a tailored treatment plan that is to your risk. And for certain people with very high-risk cancers, mastectomy is the best option. And so it really is making sure that your treatment regimen is tailored to your risk, but also your concerns. Because I've certainly had young women with dense breast tissues that said, "You know what? I know that this is the same, but I cannot for the life of me tolerate another biopsy down the road and you're telling me it's likely I'm going to have another biopsy because I have dense breast tissue, which is busy. I had eight biopsies leading up to my diagnosis and I just can't take it, take them both off." And I understand that and we should be kind of acknowledging those other concerns as well. Right? Scanxiety is real.

Loriana Hernandez-Aldama: Yes.

Dr. Marisa Weiss: Each of these are big decisions and you don't have to make, generally speaking, you can take your time to consider all the pros and cons carefully before you go to make a decision and move forward with it. And I think that's really important. We women, we can't just be pushed into doing something or rushed into doing something. We have to be good with our decisions. We have to consider them, really feel it out, know that it's right for us before we move forward and put it into play.

Loriana Hernandez-Aldama: Another question that came in is, "What do you recommend for someone unable to tolerate hormone therapy?" And I'm not sure we don't have too much time, but –

Amanda Helms: I actually couldn't tolerate hormone therapy and it was odd that I was placed on it in the first place until I got to a doctor who considered me more triple negative. I didn't even learn that I was only at a 1% benefit. So what's important to ask your doctor is kind of like what Dr. Chino said, you have to weigh your risk versus your benefit. If they had told me from day one, this is only a 1% benefit of you not having a recurrence, I probably wouldn't have. I might've tried it, but I would not have been on it for the full two years that I was on it. And similarly, I think it was Megan who was talking about how she couldn't even walk at some point. Similar, I would come home from work, I was teaching, and then I became a librarian, and I would sit in a chair and I would often, and I'm a pretty tough cookie, and I would sit and I would cry genuinely out of pain, but I felt like if I quit that I was giving up.

And that kind of brings me to my whole philosophy around recurrences and breast cancer diagnoses in women is that as women, we often blame ourselves. And so for any survivor that's listening right now, you did not cause your cancer. You did not ask for it, nothing you did. There was probably no way you were going to change it. There are lifestyle factors that impact things, but especially when I know so many women who've gone through recurrences and they look at themselves and they say, "What did I do wrong?" You're not doing anything wrong. The cards are going to fall where they fall. So that's my take on recurrences in general. Obviously, you should be living a healthy lifestyle. You should be dieting and moving when you can, but you also have to pay attention to what your body's telling you. And if your body is telling you that you need rest, it is okay to rest. We don't have to run ourselves into the ground because we feel some kind of guilt that we're assigning to ourselves.

Loriana Hernandez-Aldama: You all are so amazing, and Dr. Weiss, you are incredible, and I'm so honored to be here with all of you. So thank you all for submitting your questions for also participating as panelists. And now we have a special message from Donna Hopf, the lead for breast cancer advocacy at Lilly. Thank you again to Lilly for their support.

Donna Hopf: Hi, I'm Donna Hopf, lead for breast cancer advocacy at Lilly. Lilly is dedicated to breast cancer research in supporting patient education programs like this one. I'm inspired to be a part of Breastcancer.org's town hall today focused on follow-up care after active treatment for breast cancer ends. Today's gathering demonstrates how together we can make a difference. We are so proud to partner with Breastcancer.org. This program underscores their dedication to meeting people diagnosed with breast cancer where they are with accessible information and connection. On behalf of everyone at Lilly, many of whom have been touched by cancer in some ways, I want to thank you for your partnership, your inspiration, and the opportunity to make a difference together.

Lisa Kline: Thank you, Donna, and thank you Lilly for the generous support of today's webinar.

Before we go, I want to remind everyone that Breastcancer.org's special report is available at the link provided on the screen or you can scan the QR code. If you're looking to connect with others who know exactly what you're going through, the Breastcancer.org online community and our virtual meetups are here for you. You can sign-up on our website.

Thank you so much to our panelists and to our sponsors, and to all of our attendees for an amazing program today. Take care.