Real Talk: Healthy Body and Mind After Breast Cancer Treatment

Dr. Marisa Weiss: Hello, everyone. I'm Dr. Marisa Weiss. Thank you all for joining us to talk about life after breast cancer.

One of the biggest misconceptions about finishing treatment is that it means that you're done with breast cancer. For most people, it's much more complicated than ringing the bell. It's probably harder than you expected, to simply close the door and walk away. Mentally and physically, it takes a long time to recover. We enter a new normal of close monitoring, managing lingering side effects, processing changes to our bodies, trying to create a healthy lifestyle, all of that fear of recurrence kind of lurking in the back of our minds.

Of course, there can also be so much joy, gratitude, relief, and celebration, and it's so important to let that happiness in whenever you can. But today we're focused on honestly discussing the parts of survivorship that can be unexpected or challenging to manage, and sometimes hard to talk about with our loved ones, expectations we have for ourselves and managing everyone else's expectations. I mean, there's a lot to deal with there, and it can add to our stress and strain. Yes, we all want everything to go back to normal again. So let's bring it all out in the open and explore what it means to have a healthy mind and body after treatment without the pressure to be perfect.

First, I want to thank our generous sponsor Novartis for making this program possible. We appreciate their ongoing support of Breastcancer.org.

We are joined today by a group of inspiring speakers. Loriana Hernández-Aldama is an Emmy Award-winning journalist, author, two-time cancer survivor, global patient advocate, podcast host, and the founder of Armor Up for Life. Loriana will be moderating our panel discussion today, and we're so thrilled to have partnered with her and her organization on this webinar.

First, we'll hear from Charlene Abrams, Epiphany Wallner-Haas, and Carolyn Tescher. These phenomenal women are actively involved in the Breastcancer.org community. Thank you all for sharing your stories with us and for helping so many other people who join our community, seeking support and someone just to lean on and learn from.

And we are honored to have Dr. Kevin Fox here to share his expertise. Dr. Fox is emeritus professor of medicine at the University of Pennsylvania. Over his 45 years in medical oncology, he's published more than a hundred articles in journals, and as abstracts. Dr. Fox has been recognized as one of America's top doctors for many years. He's a close colleague and a personal friend and known for his wealth of knowledge and sincere compassion. Thank you, Dr. Fox, for joining us.

And now it's my pleasure to introduce you to our good friend Loriana Hernández-Aldama. Welcome, Loriana. I'll let you take it from here.

Loriana: Oh, thank you so much, Dr. Weiss. It is just an honor to partner with you and with Breastcancer.org. You bring so much insight, especially that not only do you treat patients with breast cancer, but that you yourself are a survivor, so you truly understand the depth of what we're going through.

So it's just an honor, and welcome to everyone who's joined the webinar. We are so thrilled to have such a great turnout. And why? Because this is a huge topic, talking about survivorship issues, and we want to talk about your fear of recurrence, if you're metastatic, your fear of progression, and how it impacts your daily life.

In fact, we're going to start off with a poll question about that very thing. If you see a question in the poll right now, the poll question, does your fear of recurrence or fear of progression, if you're metastatic, impact your daily life? And you have a chance to vote on it.

And what I want to say is while you're thinking about when you're voting, it is okay. One of the reasons this is our topic of our webinar, real talk, is because we need this raw and real talk. And I will say it myself, I suffer with severe PTSD and anxiety post-cancer. I had leukemia, then I had breast cancer, and I always fear, I'm looking over my shoulder. It impacts what I do when I do it, who I go out with, and it impacts my relationships. So we really need to unite together. So hopefully we will have the answers come up soon.

I'm going to go ahead and close my poll question, because we know how I feel on this, but as you vote, it is my pleasure to welcome, as Dr. Weiss said, this amazing group of panelists, Charlene Abrams, Carolyn Tescher, and Epiphany Wallner-Haas. Thank you so much, all of you, for being here with us.

And let's go ahead. I'm sure it's not going to be a surprise to see the results. I don't know if I see the results coming up, but maybe someone could put it... Let's see. So far, 72%. And of course who's surprised? Because it is normal. In fact, my dad used to say normal is a cycle on the washing machine, and that's about it, and I think we've all learned that after breast cancer. So it is normal. It is impacting a lot of people's daily life. 72% right now.

But I want to start off with all of you as we look at these poll numbers, we're all survivors here together. We have to lift each other up. Can you each briefly introduce yourself, who you are, about your type of breast cancer, and why you advocate before we dive in? And Charlene, I want to start with you.

Charlene: Hi, thank you so much for inviting me to this. I love to share. I have a passion for this. So I am a two-time breast cancer survivor. I had ductal carcinoma stage II both times, but I have a passion as a result of going through everything that I went through. I have a passion for really trying to help others to navigate their way through this process. I also work in clinical research for pharma, and I work in oncology research, so a result of me learning a lot and the clinical studies that I conduct and the drugs that we use, I know a lot of information and so I try and share a lot with people just to help them to also navigate their way through the process.

Loriana: Thank you. Epiphany?

Epiphany: Hi. Thank you also for having me here. So just a little bit about my cancer story is I really was diagnosed after advocating for myself, I was only 34 years old, advocating for a mammogram, and lo and behold, I was diagnosed with stage IIIB, invasive ductal carcinoma, ER-positive, HER2-positive. And then I went through the whole gambit, because I was 34. So six rounds of chemo, a mastectomy, 25 rounds of radiation, then another 10 rounds of low-dose chemo, and now be on hormonal therapy and blood thinners for 10 years. So the things that really brought me strength is Breastcancer.org, especially the groups, as well as my family, so family and friends. So great to be here and share my story and my ups and downs through navigating post-treatment.

Loriana: And I think it's important to have each of you here, and Carolyn, we'll get to you in a second, but the fact that you said you were 34 when you were diagnosed, and the last conference I was at, the oncologist said, we used to think it was rare when we found a breast cancer patient under the age of 40. Now we see it every day. So it's so important to have you out there advocating, and Charlene, you as well, because you work in clinical trials and you see that aspect from another angle. So there's so much insight you can bring. So Carolyn, tell me more about your breast cancer and why you advocate.

Carolyn: So I was initially diagnosed stage I, invasive ductal carcinoma, but after a lumpectomy and a lymph node dissection, I had 22 lymph nodes removed and 16 were positive. That was then bumped to stage III, level 2. And so yeah, I had the same as Epiphany, six rounds TCHP, full year of immunotherapy, 30 rounds of radiation treatment. And now I am on hormone-blocking medication for 10 years, so similarly. And I was diagnosed in July of 2023, so I'm just recently finished with my treatment in 2024. And my advocacy passion very much stems from my core belief that women need to be empowered, they need to be educated, empowered, encouraged, have empathy for women whose lives have been completely changed by this diagnosis, this gut punch that they get. And they need to have women like Epiphany and Charlene and all the women who go through Breastcancer.org to get support, get resources.

Loriana: And I think you all said that it gives you purpose. And for everyone who is joining us today, our audience members that you're watching, I wanted each of them to share before we get to how we navigate this, because I want to humanize this so you don't think, when you have people on the outside, friends say, "Why haven't you gotten past this? Leave this in your past." You can't leave it in your past. It's part of who you are now.

So I want to dive in deeper with each of you because we picked this topic of recurrence because it is so popular. Fears of recurrence, fears of progression, this anxiety, feeling misunderstood from friends. Tell me what each of you feel and the trauma, because you're talking about the radiation, the chemo you've been through, so it's those triggers, and then what happens afterwards, how you navigate your job, your life, your relationships. Tell me about that, and then how each of you have decided how you would navigate these tough times. And Epiphany, I'll start with you.

Epiphany: Yes. So I consider myself a type A sort of person. So I like to plan, I like to get things in an order. That could have contributed to the stress that potentially led to my breast cancer. Who knows? But I really like to have a plan, and if the plan doesn't work out for me, then I change it. I also really appreciate a sounding board, so someone who I can bounce ideas off of. And specifically for the recurrence fear for me is what can I actively do instead of just thinking about the recurrence of happening, what can I actively do today, right now, to help reduce my risk of recurrence? Is it drinking water? Is it exercising? Is it simply eating cruciferous vegetables? And I do those things, and I find ways to make broccoli taste good. I put a little soy sauce on it.

Loriana: Please share.

Epiphany: It's a preference. Yes. So I think that's really what helps me. And in terms of work, I honestly did work through the hard parts of chemo, and I got promoted actually during that hard year. So I do think it does kind of speak to my resilience, but I continue to really appreciate my job. They're very flexible and they understand my limitations even now. So yeah, just continuing with the things that I can do and the things that I cannot do, really.

Loriana: And I'm so proud and happy that you've been able to find these ways to navigate and that's what we want to share. But Carolyn and Charlene... And it's real talk. So listen, we don't even have to take turns. We can just chime in and jump in, because I want to, as we're talking about how you've decided to navigate, and Epiphany, seems like you've done a great job. I'm type A, I totally get it. I have to have a schedule. I had a schedule when I was in the hospital. Walk, breathe, write. But I want to take it back further to explain some of the emotions you feel. I want those in the audience to really feel validated at what they're going through. So can any of you, Charlene, Carolyn, talk to me about the emotions of walking down those halls again for those appointments or having them just all the emotions.

Carolyn: Yeah. I had a really good friend tell me that once cancer yells in your face, it never stops whispering in your ear. And I think that it's very, very spot-on, because it just is that ever-present little whisper. And for me, things that help me deal with my fear and the loss and the grief that goes along with the cancer journey is I have a very good therapist that I've worked through a lot of these things with. And I want to encourage women who are experiencing breast cancer to seek that professional help, to not worry about being stigmatized or put in a category. It doesn't matter because they are so informed and helpful in dealing with that. And like Epiphany, you mentioned exercise. I'm Type A too. Anybody who knows me knows I was like the Energizer Bunny. I couldn't stay still. Meditation, I've started, with the guidance of my yoga teacher and mentor, a meditation practice, which really helps. Journaling, I talk to some very, very core women friends who they know I'm a crier, I will talk to them, cry to them, and they embrace that. They tell me it's okay. And again, Epiphany, and you mentioned the support groups at Breastcancer.org, invaluable, completely. They were the calm amidst the storm, you know?

Loriana: But what about the emotions? Can you talk about some of the... And Charlene, I want you to add your insights as well.

Charlene: Sure.

Loriana: Talk to me about the emotions. For me, some of the PTSD... And I had leukemia before I had breast cancer, and I was away from my son for a year. So I have some thoughts that are unrelated to going to the hospital of I don't want to go on that trip away from my son. What if I die and I don't see him again? Those kind of anxiety-producing... that I'm embarrassed to tell my friends who are not our people.

Charlene: But that's normal.

Loriana: Because they're like, "That's so crazy."

Charlene: Absolutely. That's a normal feeling. And every pain that I feel, it's like, "Oh my God, it's cancer." Every time I hear somebody else is diagnosed, it's like I'm being diagnosed all over again. It's going to happen. The fear is going to be there, but you work through it. And then if you have therapy, if you can go through therapy, then that's wonderful. For me, I had a group of people, I had a large group of people praying for me, and that really helped to lift my spirits, and I was surrounded myself with people that were constantly lifting me up and saying good things and trying to help me through it. And it was hard. It was really hard. I went through chemotherapy twice, and it was rough. And the second time, that was 20 years' difference, and the second time it was worse than the... because I was older the second time, so it was much worse the second time.

But fear is going to be there. That's normal. And I tell people that don't think that that's not normal, because it is normal, this fear, immediately. But anything can be a trigger. I smell it. A lot of times, you know? Anything can be a trigger, and it is normal. And you work through it.

Carolyn: Yeah, and you also never know when it's going to hit. And being a very positive, energetic person, and my friends would always say that you're such a positive person, and so I told myself that narrative, but then it kind of clashed with the depression, the anxiety, the fear, and I was trying to figure out how can I be this person, this positive, energetic person that is projected outward, but inward I'm struggling so much with this, and just to reach out to my daughters or my very dear friends, just talking it out. And they would say, just embrace all of those feelings. It's okay. It's completely natural.

Loriana: Any of you explain this to your friends or family? I feel like I've had to explain because I want to say, "Look, I want to go do this with all of you. I want to do this, but it's my anxiety that's leading the way and you just have to give me the space." Are there some strategies of dealing with your relationships, whether with your spouse or your friends?

Epiphany: For me, it's that-

Charlene: You just have to say no sometimes.

Epiphany: Yeah.

Charlene: Sometimes you just tell people, "I can't do it. I just can't do it." And if you can't do it, you can't. Go ahead, Epiphany, I'm sorry.

Epiphany: Yeah.

Charlene: But you have to be able to say no sometimes.

Epiphany: For me, it's more that... I'm not the same Epiphany that I was three, four years ago. And sometimes it's hard because I do still have that positivity. I do look very similar. I seem to have bounced back, but I literally have two fans on me right now because of hot flashes. I'm 37. I'm not supposed to have hot flashes. So it's something that it just takes a little bit of grace on both parties. "Hey, I'm having anxiety about this," or I'm having frustrations that why am I having bone pain? I'm working out. Why am I not losing weight when I work out every single... If I wasn't working out before, if I was working out the same amount before this, I'd be a stick. But now I work out three, four times a week, and I got "a big belly!," according to my son.

Loriana: It's so frustrating. The weight gain is... I always say I've gained a new lens to view the world, and also gained weight. And I feel like I have to explain myself because I have a lot of fit friends, very fit friends, and I'm like, "Listen, I know what to eat. I understand what to eat. I'm on hormone therapy. I have no estrogen, no progesterone, no testosterone. I hope you get me." I don't wish this on anybody, but it's frustrating.

Epiphany: Yeah. But it's also good to hear that other people have that and are frustrated with you, and that helps. That helps me. It feels....

Charlene: That's a good thing we have with the group too, right, epiphany? Just going with Breastcancer.org group, that you have a lot of support with your sisters and it really is a blessing.

Loriana: Yeah, and then I start to think, well, if I've gained weight, then the inflammation can cause more cancer. Right? That's what we talked about officially when we were talking on the phone. Then it's another cycle, so you have to reel yourself in. That's why group therapy is so important and what Breastcancer.org offers, because you have to get with your people to talk you off the ledge and say it's okay. Talking about this anxiety, the scanxiety, the term we use to talk about the fear and panic before an imaging test, let's talk about that. What are your strategies the weeks before, or getting... I'll share after you share yours, when you're even getting in the machine, what is your strategy? Do you have a mantra? What do you do?

Epiphany: The worst week of my life was the week before I got my results from the scans the first time, and I couldn't eat, nothing. I'm proud to say that it hasn't happened. I think that piece of the breast cancer recurrence necessarily on the scans is not so bad. But I have to take a scan because they're watching a cyst on my ovary and that's where I get the anxiety, and in that regard, I just... Charlene mentioned you just have to have the emotions sometimes, and luckily I get a quick turnaround, MyChart. I love that I'm able to read the results faster. Advocate for yourself.

Loriana: Always.

Epiphany: You read it, because you'll be like-

Charlene: Absolutely.

Epiphany: ... "Oh, it hasn't changed." No, it has changed.

Charlene: Right, it has changed.

Epiphany: ... incrementally the last year, and I'm the one who's watching it more closely than my doctor. So advocate for yourself, and yeah.

Loriana: I'm sure Dr. Weiss and Dr. Fox later on will have something to say about those of us who check it before our provider checks it, because I don't have time to wait because I want to know. But the other day I was going to go on stage and I thought whatever I have from this PET scan is not going to change before I give the speech. So I'm going to give the speech and then find out, but I'm not waiting for my provider to read it. And that caught because waiting causes anxiety. But do you have a strategy when you go for these scans?

Charlene: I always want to know, and I'm the kind of... I do want the scan because I want to know what's going on. I wish I could just look inside and see what's going on. And the doctors are all like, "You can't get all these scans," and I understand that. But I do, like Epiphany was saying, I do, I get the results right away. But I already sent an email to my doctor as soon as I get them. Like, "Well, what does this mean?" And I'm looking, Googling things, and he is like, "Stop Googling things." And I'm asking him, "What does this mean?" And asking him every single line, because I want to know. And unfortunately that's the stage that we're in, right? We're in a place where there are things that you don't know and you try to understand. But I also work with people who are oncologists and I'm asking them questions too. So I'm just trying to get as much information as I can because that's the place that we're in now.

Loriana: I'm sure it's harder for you, Charlene, because from the inside, and we all know. We know, for those of us, none of us are metastatic on this panel, but we know... I have friends that I know plenty of people advocate with who are, and while we're fearing recurrence, they're fearing progression. And it can happen, no matter how you're eating. I mean we can reduce our risk, but it can still happen. And having that way over and just on our shoulder is hard. Carolyn, do you have any other strategies you want to offer?

Carolyn: I do, yeah. And actually I am coming onto my first scan after, so my last treatment was October 29th of 2024, so I'm relatively new out. So my next six-month scan is coming up soon. And I use a lot of the techniques that I've used in dealing with my fear and anxiety and depression and everything where I have a mantra that I say, my meditation, my breathing practices, just to calm myself. And I also so try and visualize, this was a technique I was told, I was taught to. Give that a visual, visualize that fear, visualize what it is that is creeping up over me. And for me, I am a Harry Potter freak, so I visualized the dementors, and then it's just a matter of facing it and telling it in no uncertain terms with very distinct kind of expletive languages to go away.

Loriana: And we can use those, and it's okay. I have a mantra. When I get to that room, I tell them I have severe anxiety and PTSD. I communicate with them. I cannot open my eyes in that machine. If I do, I'm done. So besides taking maybe something that's going to calm me down, I have a mantra that says, "I am strong, I am brave, I am healed, I'm cured." And I repeat it like a cheer. "I am strong, I am brave, I am healed, I am cured." And then I do this yoga breathing called four-seven-eight that I breathe in for four, hold it for seven, and breathe out for eight. And as long as my eyes are closed and I don't see how close that machine is, just that actual act of getting the scan, that's the only way I can get through it besides having a ride so I can take something to calm down.

And then when I find out everything's okay, I probably have the best sleep of my life for the next two weeks until I can maybe worry that if it's something else. But it's so good-

Carolyn: Or a hot flash, probably.

Loriana: have some sort of strategies. I know my mantra works for me, so find out what works for you for those in the audience.

Epiphany: One more thing on things that work for me when I'm in the actual MRI system machine is going back to I have a radiation sister. When I went through radiation, she was going through radiation as well, and it helped me to say to myself, "She's going through this, she can do this, I can do this." So I think I need to dust that off. I haven't used that in the MRI session, so thank you for reminding me.

Loriana: But then there's the food ingredients, the chemicals that could be in our detergent. How do you find that balance of fact and not worrying and feeling empowered and in control?

Epiphany: I did go through everything in the house, cleaning, supplies, makeup. I sent a huge box. If my mom's on this panel right now, huge box of makeup her way because I was like, " not using it, but I know she'll still use it." So I did go through it. And what helps me is it took me a little while, but now I know the brands that I trust, and I don't drink, and I am considered like a flexitarian. I don't eat that lot of meat, and I did these changes. But honestly, all those changes so far has been positive. My skin has never looked better. I had acne all my life, and I still have acne. I have a few still here, but it's way better now and it's because of all the water that I'm drinking, and the clean products that I'm putting on my face. And so yeah, it may have been a hard ramp-up, but now I'm on coast mode.

Loriana: When I go out, I'm always saying I'm the designated driver and I will take kombucha. That's as much as I live on the edge. Or that's some sparkling water and lemon. And my chemicals at home are like vinegar and water with a little bit of lavender. That's how I clean. And Charlene, what would you like to add to that?

Carolyn: I agree with... I can kind of associate with Epiphany, you were saying. My diet, initially was, even pre-cancer, was not that bad. I didn't eat sweet drinks, I didn't go to fast food. But now, it's like how can I even go beyond that? Eating organically, going to my local farmer's market, not eating super-ultra-processed foods, no sugary drinks, drinking my water. That's all I drink is drinking water all the time, hydrating. And also, I, because I'm a librarian and an educator, I read a lot of resources, and I rely on the experts. I don't do deep dives in Google. I go to the people that I know, my doctors, my nutritionists, through Kaiser, the experts, my oncologist. So I think relying on those experts, eating cleanly, limiting red meat. I don't drink alcohol.

Charlene: Well I never drank, so that wasn't a problem. The sugar has always been the problem, but it's much better now. I really don't like sugar as much now, so that's good. You know that there are certain things that can cause cancer, but we don't know what causes cancer, right? That's the problem. So you try to do better with the information that you have, and that's the best that you can do. And you just do better for your health and to make sure that your life is sustained, and that's the best that you can do.

Loriana: We only have two minutes, but I want to ask if you can quickly tell us how do you handle people in your life who think, "Well, the treatment's over, you're normal again, like cancer never happened. Move on."

Charlene: It's not over. It's just not over. Every time I look in the mirror, I still see cancer. So for me, it's not over. And that's why I try and tell people and try and help people as much as possible. For people that are going through this process, they need to understand that it's just a gift that keeps on giving. Your side effects and things like that, it's just going to be there. So once you have it, it's like you won't forget it.

Carolyn: And even, Charlene, after you tell that to people, they'll always... It's just that I don't think that some people have the emotional capacity. I don't think they have the bandwidth to deal with cancer and its fallout sometimes, for whatever reason. And so one thing that I... just my simple go-to is I use the phrase, "Let them them, let me." Deal with this, let him let her. They understand it this way. I can now let me tell them like you were saying, this is how it is for me.

Loriana: And before we go, Epiphany, I want you to answer that question as well, and then we'll have to wrap it up.

Epiphany: It's a combination of what was already said, and also just to say, "Hey, I have a new normal. I have a new normal. It's just a little different, but I am still... I'm alive. I'm a warrior. I've finished it, and I'm not going to be able to change how you respond or you think a certain way, but I know that I'm different." And so that's really how I go about it. Like, well, no, I still have some impacts, but I got over the harder part.

Loriana: Well, I told someone, as I wrap this up and we'll have to move on to the doctors, I had an oncologist I went to who I don't see anymore, and I was crying and she said, "Maybe you should forget you had cancer." And I was like, "Well, when I stand up and my feet are on fire, I don't forget I had cancer. When I look in the mirror and my breasts are gone, I don't forget I had cancer. When cognitively I can't remember things, I don't forget I had cancer. When I look at my bank statements, I don't forget I had cancer." And I went through this list and stood up, and I think by then she realized that I had PTSD and I was done, and I was like, "I will never forget that I had cancer. It has changed the lens through which I view the world, and it's who I am now." So enough with that conversation.

Carolyn: Yeah, it changes you fundamentally as a person.

Loriana: I want to thank all of you. We have so much more to discuss, and we will absolutely have you on our podcast Stage Free because you're all amazing. But thank you, Epiphany, Charlene, and Carolyn for being so open and sharing your stories, and-

Carolyn: Thank you.

Loriana: Thank you for everything. I now want to welcome back Dr. Weiss, the founder and chief medical officer of Breastcancer.org, and Dr. Kevin Fox, who Dr. Weiss talked about earlier, emeritus professor of medicine at University of Penn, known as one of America's top doctors. So thank you both for being here. And before we go to anything else, I want to make sure... Hopefully... I thought I lost you for a minute before we go to all the questions, there is so much to talk about. We didn't even get to everything. But would you like to add to this conversation? Is there any clarification that's needed, or just some insights?

Dr. Kevin Fox: Marisa, you go first.

Dr. Marisa Weiss: Well, I can just say as a dual citizen, a doctor and a patient, I'm nodding my head to everything that I've heard, and really enter the questions that have been submitted that are so personal. I had the best care possible, but there were still major gaps. And it's really interesting. You can have a lot of... sometimes you need to hold a lot of complicated feelings all at the same time. You can be grateful, relieved, and feeling blessed, at the same time that you're feeling angry, frustrated, and abandoned. So it's a rough ride, and the everyday life, trudging through it, requires a lot of skill, tenacity, resources. You can't do it alone. You don't want to do it alone. There's so much that you can learn from other people who've been there, done that, and that's a lot of what's available on Breastcancer.org in the community, where you can learn from each other, and all the members of the community that you just met. They're awesome, they're around, they have so much wisdom, and personal tips to share.

I know that in my experience as a chief medical officer of Breastcancer.org as a physician, and I know Dr. Fox also knows this so well, is that there's only one of each person that we take care of, and what you went through and how you experienced it is unique to you. Yes, there are a lot of shared things that you're going to deal with, but whatever is... as you look to your future, as you look to getting out of the trench, out of the ditch and back on your feet moving forward, know that it's going to take a lot of trial and error, trying new things, going outside your comfort zone, and having the faith and the tenacity just to try it and do it and get out of bed to do it, because what helps you helps you, and it may or may not help somebody else, but you definitely learn from other people who have ideas about what can be useful.

Loriana: Absolutely. And Dr. Fox, is there any clarification you want to make or any just insight you want to bring after hearing the panel before we get-

Dr. Marisa Weiss: Well, at the risk of going on and on and using up all our available time, I did want to say a couple of quick things, one of which is as I sit and I listen, it is remarkable to me how this field, if you want to call it that, has evolved, and all for the better. Because I have the advantage or disadvantage of the long view. I think back to when I started seeing patients with breast cancer, and this is now 40 years ago, when the whole notion of giving treatment to women with early stage breast cancer was a novel idea, and how we were suddenly about the business of treating patients. And we did two things. One is we felt a need to jealously protect the well-being of those patients in perpetuity. The medical oncologists felt that it was their responsibility to be in a position to care for those patients forever.

But the second thing was how ill-equipped we were to do it, and how we were completely unable in the 1980s to reconcile all of the things that patients would now have to confront. And 40 years later, are we better at it? I think somewhat, but I think Carolyn made a comment about people who don't have, if I can quote you, Carolyn, the emotional bandwidth to be helpful. And I think part of the training and responsibility of physicians, medical oncologists, radiation oncologists, surgeons, general practitioners, is somehow to mature enough to have their own emotional bandwidth to understand, first and foremost what they don't know, and there is an awful lot that we don't know. And I think coming to grips with our own... Ignorance is the wrong word. Lack of information is the better expression. Coming to grips with the fact that we are not in charge. We are there to find, to provide help. The patient, ultimately, is always the one that is in charge and the patient has the right to make their own choices.

Loriana: Navigate that terrain.

Dr. Kevin Fox: Everything is a collaborative effort, but our job is to, first and foremost, listen and validate and acknowledge everybody in this situation. And as Carolyn said, not all healthcare providers have the emotional bandwidth to do that.

Loriana: And I think-

Dr. Kevin Fox: ... we're better at it now than we were 40 years ago.

Loriana: We have made so much progress, and thank you for all the work that you've done as well. But I do say we're saving more patients now, but we don't have all the tools and the nets to catch us, because so much has evolved and we're saving more people, but that survivorship, Dr. Weiss, we talked before with previous webinars about survivorship care plans to help us navigate. It's like now that you're saving more people, how do we navigate this with the long-term survivorship, the long-term complications we face, the neuropathy, the bone pain, the depression, and now we're finally talking about patient-centricity. So what should patients expect from their care plan or how should they ask for it? What are your suggestions?

Dr. Marisa Weiss: Well, what used to be sort of a requirement that people get a survivorship care plan often was like a boilerplate kind of list of resources and list of all the doctors that took care of you, the dates of your procedures, what was done and all that, still very useful. But for each individual, it is a journey that, and you're like a pioneer discovering and rebuilding your new life with assistance from the people you're taking care of, trying to create a plan. But you can often feel like you're out in the wilderness on your own or you can feel like your life was a jigsaw puzzle thrown on the floor and you got to pick up the pieces and put them back together, and you can't do it all at once. You got to start somewhere.

One thing I tell people is to think of yourself like a newborn baby. Try to get yourself on a schedule, create some structure in your every day, make sure you, let's say, go to sleep at the same time, wake up at the same time. Introduce routines, rituals, and rhythms that retrain your body and let your body know that time to get back into it. Everyone meet up here, and let's get to work here. Let's row the boat in the same direction. Let those little voices in your head stop saying, "Oh, you're too heavy. Oh, you look awful. Your hair's falling out. Oh, the incisions look so awful. Oh, it hurts so much." Try to sort of retrain and say, "Look, we want to recognize all that I've been through. Give yourself credit for all the hard work you put in to get you to a safer, healthier place. But now we're going to try to proactively find joy in each day."

Let's say, for example, you wake up in the morning like, "Oh my, here's a new day," and have a mantra like we heard from our community members, like a mantra like... I mean this is what helped me was I woke up and said, "Happy to be alive." Most likely, I'm cancer-free. For those of you who have metastatic disease, most likely this is under control today. I did everything I could that was reasonable and effective to get rid of it, and I'm going to do the best I can in my everyday life to be as healthy as possible, but I know that no one's perfect, including me. And if it means having fun, you can break a few rules, but just sort of rallying the troops within yourself and also putting your... if you've got people around you who, let's say, at church or at school or in the synagogue, wherever you are, in the neighborhood, at the grocery store, that you see running towards you like a freight train with a story they have to dump on you, you know, and Dr. Fox and I know that generally speaking, it's never a good story.

So when you hear a story coming, I always say... Put your hand up like this and say, "Thank you for caring, but I can't hear another story right now." Because generally speaking, people are holding like a hot potato that makes them uncomfortable. They want to throw it to you. Like someone, when I was diagnosed, they came up to me like four different times. They found me. They were calling me, texting me, wouldn't leave me alone and saying, " that woman, da-da-da-da-da? Well, she has cancer, it's everywhere, and it's growing everywhere." And why they needed to leave that message for me in four different places, you know?

Loriana: And you're an oncologist.

Dr. Marisa Weiss: Yep. It can really pollute your mind, and could throw you off. So I was very careful to try to selectively find those people that would pick me up and keep me up there. And I thank my colleague, Kevin, Dr. Fox, for being one of those people that I could just turn to and say, "Yo, what's up with this medicine that I'm on? How do I manage this?" And you would, say, I know, you would say like, "Look, you got to try to get along with it, hang out with it for a while, see how it fits you. It's not a marriage, you're just dating the thing. If it doesn't agree with you, we've got other things to try that can also give you the protection that you need." So being able to lean on people.

Loriana: And speaking of that, when we talk about some of those moments, because I always say to people, "I have to protect my peace, protect my energy. I'm not adding inflammation to what I've already got," Dr. Fox, I want to ask you about the stress. And we hear so much about the stress and cancer connection, and inflammation is a fertilizer for cancer. We hear all these things, but yet in survivorship, we're stressed, because our life's been turned upside down, we're trying to get back on our feet, financially, emotionally, and whether it's our relationships, our work, the people around us, our bills. What do you tell your patients about managing stress, why it's important, so we can hopefully reduce our risk of recurrence or for those with metastatic, reduce the risk of progression?

Dr. Kevin Fox: This gets back to the... as physicians, we're trained to be inherent skeptics. Skepticism can be defined different ways, but we are taught to be reluctant to embrace any belief without proof. And it's funny, I remember, the first time that I was confronted with that question as to whether stress might have provoked a recurrence, was in 1986. I remember the day, I remember the patient, I remember the circumstances. It was a man, and had a recurrence of his cancer, and he worked for a large Philadelphia-based company which had gone through a huge upheaval, lost his job, which was... Anyway, it was a horrible work situation, and the stress was enormous. And his wife posed to me that question, and I felt so incapable of answering it properly in 1986. And now here we are, whatever number of years later it is, and I don't necessarily feel any better equipped to answer it, except that I think the accumulating evidence is that stress per se probably is not a risk factor for recurrence.

But having said that, it's still bad. Stress is inherently a bad thing. Every day that you experience stress about any issue is a bad day. And we need to find, as oncologists, we need to find ways of allaying stress, not because we think we're going to reduce recurrence risk, but because reducing stress is simply pointing a person in the general direction of wellness. It's an act of kindness. So when someone takes a medication, for example, and that medication is making them feel miserable, and that misery is causing them stress, which then compounds their concern about recurrence and compounds their concern about stopping the medication which is making them feel terrible in the first place, and how can they... Our job is to first listen, acknowledge the fact that they're not experiencing anything unusual, and then try to find constructive solutions. But again... the short answer is I don't believe that stress per se is a known recurrence risk. But I think stress per se is an unpleasant, undesirable, unwanted thing that we have an obligation to try to mitigate as best we can.

Loriana: And we can reduce our-

Dr. Marisa Weiss: And it takes work. It takes work. I mean it just can pollute your every day and steal joy. And I discovered through my own experience that my mind is my most powerful organ, and it can throw me off. As the community members said, little things can trigger you, the littlest things. But the good news is we have learned a lot more about mindfulness, about how to train your mind to harness it, to use the power of your mind for good things, and to redirect your thinking and to... meditation and stress reduction and exercise and avoiding social isolation, repairing, working on, enhancing the relationships that bring you joy and fun and comfort. Mixing it up, getting out of dodge, going to that movie, immersing yourself in something that's completely different. All those things can really help, but it takes time too, of course.

Loriana: My book coming out this year is Finding Joy in the Straightaways because if I didn't find the joy in those little moments, I would end up in a rabbit hole. The top tips before we go into the questions, because we're running out of time and you both have such amazing, insightful answers, the top healthy tips for a balanced lifestyle.

Dr. Kevin Fox: I'll let you go with that one, Marisa.

Dr. Marisa Weiss: Whoa, whoa, whoa. Thanks, Dr. Fox. Well, for a balanced lifestyle, well, I would say that we're the commander of our ship kind of thing, and we've got to steer this big barge that we're living on. And it may be that you have to consciously schedule time to do what you need to do so it is balanced. So for example, you decide how many hours you're going to try to go to sleep, do everything you can to enhance your sleep, go to sleep at the same time, wake up at the same time, and then go to work, do your work thing. When you get home, if you have follow-up from your work, do that for a limited period of time, and then you move out of that chair, move out of that room, go to someplace else and find joy, find something that's very soothing.

For me, I hang out with my family and friends, I call and text people. Yes, I have a TikTok addiction. That's a problem. I am a great seamstress, believe it or not, and I love to do that. And I cook, and my husband eats the food and it's pretty darn good. It's healthy. So all those things end up balancing the heaviness. And I know that Dr. Fox and I both have a very serious career where we're taking care of breast cancer patients through the hospital, through Breastcancer.org all the time. That's a lot to shoulder. But each person that I see is always shouldering a lot of burden. And then delegating things that don't matter as much.

Loriana: Yes. And on that note, I have to delegate that we have people waiting for both of you to answer questions in the Q&A section, we need to do another one because we could go on... We have so much more to discuss and you both have been amazing. So sorry for me delegating as we move on, but there are people excited to talk to you in the Q&A section. But I love that about delegating because I've had to learn to let go of things. So for those watching, for our audience members, we want to give you an opportunity to talk to the amazing Dr. Weiss and Dr. Fox and Breastcancer.org senior editor Jamie DePolo, and to get your questions in there. While you're doing the questions, while you both are doing the questions, for about 10 minutes, they'll be doing the questions.

I also want to let you know if there's questions that do not get answered, we will have Armor Up for Life, we'll have on our Stage Free podcast, Dr. Fox. And when you get the newsletter next week, it will have the link to this webinar. It will also have the link to the podcast with Dr. Fox, so we'll try to get all your questions answered. But I do want to remind you that we cannot offer personal medical advice. So I apologize in advance if all the questions don't get answered, but we will do our best between this webinar and our podcast. And now I want to talk about mental health support, because we've talked about this over and over in this podcast, and you'll hear about it online as well. Mental health is health, and it's okay, and it's good in fact to wave the flag and ask for help. In fact, one of the oncologists I spoke to said, "Look, this is a team sport, going through cancer. You need a team so you could focus on this journey."

And so sometimes it's hard to begin to know where do you look for help. There's also a stigma. It is okay, I encourage you, I have my own therapist. Many people think, though, mental health support is just one-on-one, sitting in a room or having a Zoom call with a psychiatrist or a therapist. But it can vary. There could be cognitive behavioral therapy, psychoanalytic therapy, but you need to know when you are basically interviewing this therapist, if you're doing one-on-one, what form of therapy do they practice so you can understand if it's a good fit for you.

Now, there are also groups, as you heard. Breastcancer.org offers so many groups that you can participate in that will help give you clarity, give you ideas of navigating, and what I say, meaningful friendships like finding your people. I love finding my people. We don't like to be part of this group called Survivors but we're here, and I love finding my people because we understand each other and we can help each other navigate. And at Breastcancer.org, they offer free virtual support groups, and they take place every day of the week. You can find peer support on the discussion forums any time of the day. We will email you all of those links to the forums as well and the support group sign up when we send the newsletter out.

There's other mental health support options that you could talk to your doctor about, antidepressant medicines, cannabis for pain, anxiety, insomnia, that I've heard have worked very well for people I know. And there's other supplements. If you have an integrative oncologist or access to one, there's other supplements he or she could recommend. And then there's acupuncture and meditation and yoga, and there's so many benefits just to reducing stress in your life. Acupuncture has been very successful. In fact, some academic centers are starting to offer it in their survivorship plans, but I understand, if you don't have access to an academic center, it may be harder to find and harder to get your insurance to cover it, but it is something to definitely look into. But remember, before trying anything, always, always talk to your doctor and make sure that it would work with your care plan and your treatment and where you are along your journey. It's important to discuss. But you can find that all that information and so much more at breastcancer.org/mentalhealth.

And now with the little bit of time I have left just a few minutes, I want to go into the Q&A and see if we could talk about some of the... I can read some of the questions that people are asking.

Cellulitis. I've heard of this last year. I had no idea what it was until last Sunday. Can you speak about it? So Jamie DePolo is giving a link to the Mayo Clinic to talk more about cellulitis. Let's see. Let's see.

Is there a resource to find out if Mondor's cord, the latest rare thing, is a concern for clotting in certain areas? There's also another link. So you can scroll through these Q&As and see if there's something.

Here's something Dr. Weiss answered. How can I become more intimate during my cancer journey? I'm nervous about chemo radiation spreading to my partner. She answered: Sorry, you're struggling with these tender concerns, and ask your medical oncologist how to have these intimate relations after a cycle of chemo. I know this is another topic we're talking about for our webinar series, is to talk about the side of cancer, the silent side of cancer that not many people address is how chemo chemo and radiation affect your intimacy. And so that's a different part of the question, but it's something that certainly needs to be addressed, so I'm glad Dr. Weiss was able to hop in and ask those questions.

We only have just probably one or two more minutes, but I encourage you to please scroll through this Q&A. There are some wonderful links on here to give you some answers. There are also support groups at Breastcancer.org, they said any day of the week, breastcancer.org/mentalhealth.

Jamie DePolo has answered some questions. People are talking about the hormone issues for hormone replacement therapy, whether you go five years or 10 years, and there are answers for all of this. And again, the best part is we are going to have Dr. Fox on Armored for Life's podcast called Stage Free. We are going to interview him this week, and when you get that newsletter a week from now, you'll get the link to the webinar, the link to the podcast, the link for the forums, everything you need to know. And we are just so excited.

We're thankful that you were able to join us, and we can't wait to share all the exciting things we have planned for other future webinars, because this is really all about educating and empowering patients so we have the tools to have shared decision-making, that we're making decisions along with our oncologists and that we're navigating this together. So just have a wonderful day everyone, and I'm so glad you can join. Thank you.

Q: Cellulitis. I maybe had heard of this once over the last year. I had no idea what is was when I got it last Sunday. I just got home from the hospital today after four days of IV antibiotics. Can you speak about it? 

A from Jamie DePolo: This page from the Mayo Clinic may help.

Q: How can one who is 10 yrs post diagnosis determine their prognosis? Are there tests, etc that one should leverage or is it just wait and see? 

A from Jamie DePolo: We have tips on how to get the best follow-up care: it depends in part on the characteristics of the cancer and the treatments you received. 

Q: If you can talk about what the experts are saying about the role of exercise in preventing recurrence of breast cancer, that would be helpful. Thank you.

A from Jamie DePolo: There is a lot of ongoing research on exercise and risk, both of a first time cancer and recurrence. Here is one example. 

Q: Can you talk about how to manage early menopause for young er+pr+ survivors? I'm concerned about the long term effects, particularly dementia. How can these risks be counteracted? 

A from Jamie DePolo: We have a large section on menopause and menopausal symptoms. Almost all the symptoms have pages that include ways to manage them. 

Q: Is there a resource to find out if Mondor's cord (the latest rare thing I have) is concern for clotting in other areas? 

A from Jamie DePolo: Here is the NIH page on Mondor Disease. 

Q: I am curious if there is any research on using testosterone for my body pain and side effects. 

A from Jamie DePolo: I'm not familiar with a ton of research, but there is this paper from 2023. 

Q: How can I become more intimate during my cancer journey? I’m nervous about chemo/radiation spreading to my partner. 

A from Dr. Marisa Weiss: Sorry you are struggling with these tender concerns. Ask your medical oncologist about how to have intimate relations after a cycle of chemo--it may require using a condom for a few days after. Generally, after radiation you are not radioactive. That is: no one can catch it from you. Go slow, try to create the mood that reflects your level of interest. Consider remembering and buying the book: She Comes First. With an orgasm, your vagina will be wetter, longer, thicker and more elastic--and more receptive to sexual activity. AND use TONS of lube: rec'd Uberlube. Wishing you the best! 

A from Jen Uscher: You might want to read Breastcancer.org’s article about sex and chemotherapy. It includes some tips about how to avoid exposing your partner to your chemo medication.

Q: How can you deal with the hormone issues when you were on HRT for 10 years and it's taken away because you have hormone positive breast cancer? All they offer are antidepressants when these are not something I can tolerate. 

A from Jamie DePolo: Which hormonal issues are you most concerned about? Hot flashes? Mood swings? Acupuncture and meditation have been shown to help with many of these. 

A from Jen Uscher: This page has information about other ways to manage menopausal symptoms (besides taking HRT or antidepressants).

Q: What are all the effective ways by which one can limit or even reduce the effects of radiation fibrosis scarring on pain on the chest wall and on the decrease in shoulder range of movement? Can these effects be permanent even with daily massage and stretching exercises? 

A from Dr. Marisa Weiss: After surgery and radiation, your body heals with scar tissue that is firmer, stiffer and more tender than your normal tissue. Work with a physical therapist to get back closer to normal, one small step at a time. Start low, go slow. Don't push too hard and fast. Just keeping your posture straight, helps you stay in an open position, and heal in that position. Yoga stretching with an instructor who understands your physical limitations can also help a lot. Applying coconut oil with circular motion, each morning and night, can also help. 

Q: Love your name... Epiphany! Just wondering why you were put on blood thinners....Tamoxifen? 

A from Epiphany Wallner-Haas: Hi! Yes I have a history of blood clots and pulmonary embolism and Tamoxifen does increase risk of clots hence my care team thought it best I was on blood thinners.

Q: Charlene, as a two-time cancer survivor please can you share your experience of your feelings second time around and if/how it differed from your first diagnosis? I'm finding that my confidence in the treatment second time around is much less than the first time, and I can't seem to move beyond fear of recurrence this time around (I've had a bilateral mastectomy 6 months ago, invasive BC + DCIS in both breasts). Thank you! 

A from Charlene Abrams: Very different from the first time because there were 20 years in between and research has progressed. I do keep up with some of the meds so that has helped me to have a better understanding. I also had bilateral mastectomy the second time to reduce my risk of recurrence. 

Q: In addition to understanding about the role exercise takes in preventing recurrence of cancer in general, I’d also like to understand the role of diet and alcohol, and whether major changes should be taken, i.e. being more focused on plant based? Is meat no longer something that should be in my diet, etc? What do I really need to take away from alcohol consumption since the latest warning from the Surgeon General? Is a few glasses of wine/wk bad?

A from Jamie DePolo: I just recorded a podcast with Dr. Tracy Crane, a cancer prevention expert from the University of Florida, on alcohol and breast cancer. It will likely go live in February. In her opinion, avoiding alcohol is the best thing to do. There are a number of studies on diet and survival. Here is one, and another and this article too. Here is more on the surgeon general advisory. 

Q: Please discuss the Signatera test for tumor dna post treatment — would you choose this testing? 

A from Dr. Kevin Fox: I do not believe that we can recommend Signatera testing for breast cancer patients based on the information we have thus far. 

Q: I am struggling with motivation for exercising and a healthier lifestyle. I know it’s proven to lower risk of recurrence and death, but since being diagnosed in August 2023 and finishing active treatment in September 2024 (with a surgery just this past Monday), I cannot muster up the energy for that and work. Any tips? 

A from Jamie DePolo: Breastcancer.org has a series of exercise videos that you may want to try to get started. 

Q: Can you provide information about breast implant illness and which type of doctor is most appropriate to go to to be evaluated for this condition? 

A from Jamie DePolo: We have this page. In many cases, your plastic surgeon may be the best person to evaluate. 

Q: Do I need to use aluminum-free deodorant? How far do I need to go with products that I use? Paraben-free make up, natural laundry detergent, is perfume cancer causing? 

A from Jamie DePolo: We have this page on antiperspirants. As far as perfume, it depends on the ingredients. You may want to visit the Environmental Working Group site for more info on ingredients. 

A from Jen Uscher: The nonprofit Breast Cancer Prevention Partners offers resources about ingredients in consumer products to avoid. In particular, you might want to check out their safer shopping guides.

Q: How to manage the stress when something feels off on your body, in your body. Anytime something is different I go straight to CANCER and worry to death. 

A from Jamie DePolo: We have a lot of resources on stress and mental health.

 Q: Bacterial infections after a lumpectomy. 

A from Dr. Marisa Weiss: After surgery, there's a higher risk of infection within the surgery area. Radiation can make that risk higher. It's important to work on a healthy lifestyle to reduce your risk of infection: stop smoking, control blood sugar and diabetes, get to and stick to a healthy weight, exercise and eat well. Plus, keep an eye on your breast area--watching for any signs of infection, like pink/redness, swelling, extra warmth and tenderness, fever and chills. Wishing you the best. 

Q: From a diet point of view…is it important to give up sugar completely?  Does it contribute to cancer returning?  I am confused. Thanks. 

A from Dr. Kevin Fox: Whether the consumption of sugar actually contributes to breast cancer recurrence is not known. Having said this, I think limiting the sugar you consume is important for general health. Sugar need not be given up completely, but can be sensibly reduced by quite a lot. 

Q: I’m just sooo sad all the time. There is the Me before cancer and the Me after. The mental load is a lot!! I want to be the me I used to be. How can I get past this? 

A from Dr. Marisa Weiss: It takes a LOT of work to reframe your situation. You want to recognize all that you've been through, give yourself credit for the hard work you have done, and work on finding joy in your everyday life. Find time to hang out with people you like and have fun with. Get outside and take a new walk each day. Take up a new hobby. Basically: mix it up and add in good things to dilute the negative. 

Q: Does exercise help reduce the risk of recurrence even if you aren’t able to lose weight? 

A from Jamie DePolo: Yes. Even if you don't lose weight, exercise changes your body composition so you have less fat and more muscle. Estrogen is stored in fat, and so less fat helps regulate it.

Q: Does Breastcancer.org have a list of therapists that are recommended? 

A from Jamie DePolo: We don't recommend specific therapists, but we have a lot of mental health resources. 

A from Jen Uscher: You might want to take a look at our page about how to find mental health support services for tips and resources on finding a therapist. 

Q: Charlene, how far out are you from treatment? I keep hoping the fear will at least get better, maybe I am just not there yet. 

A from Charlene Abrams: First diagnosis/treatment was 20 years ago. The second diagnosis/treatment was three years ago. The fear is always there, but don’t let that hinder you from living. Do what you need to do to live! 

Q: I am 8 months post radiation treatment. Do you ever get your energy back as it was prior to radiation? 

A from Carolyn Teschler: I can only speak for myself, Suzanne, but I DID get my energy back after 30 rounds of radiation, but it did take months.  I just took baby steps.  Walk for 10 minutes, then 15, then…. Just move and stay active in some way!

Q: Recently diagnosed with BC and I've decided on no treatment. I'm 90 yrs old and my doc admitted that sometimes the treatment is at least as difficult as the disease. I've outlived all 5 of my siblings and most of my cousins and have my affairs all in order. Now my friends are saying I'm senile and that I should have all available treatments. I haven't been able to find anyone who can tell me what I have to look forward to if I opt for no treatment. My doc is neutral. 

A from Dr. Marisa Weiss: Quality of life is key — even without a focus on length of survival. You want the next chapter of your life to be good — it may not be your last. Life can go on. It's important to do whatever you and your doctor agree is reasonable and effective to keep things under control so that it doesn't grow and interfere with your quality of life. 

Q: I still smoke, my guilt is daily should it be? 

A from Dr. Kevin Fox: It's a fair question....smoking may not increase the risk of breast cancer recurrence, but there are so many other risks of smoking that you should consider smoking cessation.

 Q: When you refer to a recurrence, is it the same type of cancer or a different type of breast cancer? 

A from Jamie DePolo: Cancer is constantly mutating. So a cancer that comes back may have the same characteristics as the original tumor or it may be different. That's why a second biopsy is almost always done. 

Q: There is a thin cushion pad that can be used with mammograms that greatly reduces the pain that some of us have during mammograms> I just found out after my first mammogram since my diagnosis and surgery last year that Kaiser actually has them IF you ask. Most women, I think, do not even know these pads exist. I'm sure it's a money thing, but I know that when I was younger, I sometimes delayed getting mammograms because they were so excruciatingly painful. Who knows how many women avoid getting their mammos because they have pain?? (and yay, my first re-mammo was negative!) 

A from Dr. Marisa Weiss: Thanks for sharing! 

A from Jen Uscher: I’ve also heard that some mammogram facilities offer the soft foam pads you mentioned (that can reduce pain during a mammogram). It’s worth asking about when you make an appointment for a mammogram. Breastcancer.org has some other tips on reducing pain during mammograms. 

Q: I have refused hormone blockers. Tried anastrozole. 

A from Dr. Marisa Weiss: I hear you! If these medicines are important in your care, you might want to consider other effective hormone medications. For example, I couldn't tolerate Anastrazole but was able to tolerate Exemestane. How you get along with a medicine is so, so personal. 

Q: Can we talk about how to feel human again and have a healthy sex life? Or am I dead for good in that department?   

A from Jamie DePolo: We did a webinar on sex and breast cancer. You can have good sex! 

Q: I am seven years in remission but I have a lot of stress. Anxiety, retired, lonely, tried lots of meds for the anxiety. I’m just so afraid I will get a recurrence that I am stressed a lot. How can these speakers be so positive? I've been working on getting better. 

A from Marisa Weiss: You are still dealing with a lot. It's common to feel depressed and helpless when you feel stuck with fear. But the good news, you're already 7 years out and doing well. That's amazing. It's now time to enjoy more of your life. 

Q: Has anyone dealt with lymphedema? I am teetering around after finishing radiation.  The weight thing is a big deal - it seems like the main threat of recurrence… 

A from Jamie DePolo: We have a lot of info on the site about lymphedema. 

Q: What resources are available for survivors, also young survivors? 

A from Jen Uscher: Check out Breastcancer.org’s survivorship resources. Also, there are several organizations that focus on young breast cancer survivors, such as the Young Survival Coalition.  

Q: Where can I find resources for group therapy with other breast cancer patients? 

A from Jamie DePolo: We have this page on how to find mental health support.

Q: How can I join a Breastcancer.org support group? 

A from Lisa Kline: Here’s our schedule and instructions on how to register. 

Q: Why are some ladies going on Verzenio for longer than two years? Are there ongoing studies for this medication? 

A from Jamie DePolo: For early-stage disease, you take Verzenio for two years. For metastatic disease, you take it until the cancer grows or unacceptable side effects develop. I hope that helps. 

Q: Are there any good tips on sleeping? Have tried many things without much luck. 

A from Carolyn Teschler: I had horrible insomnia after being diagnosed and going through treatment.  On the recommendation of several friends, I tried CBD gummies and a powder called Golden Milk with turmeric. Both were VERY helpful!

A from Jen Uscher: Here’s our page about treatments for insomnia.

Q: Hi, I have severe chemotherapy-induced peripheral neuropathy in my hands since 10/2020.  I have been on cymbalta and lyrica with minimal improvement.  Any suggestions to help improve the pain? 

A from Jamie DePolo: This is tough. There aren't a lot of treatments that work for everyone. We do have this page. Some studies have shown that acupuncture and massage can help. 

Q: Epiphany, what brands do you trust for cleaning? 

A from Epiphany Wallner-Haas: 1. Vinegar; 2. Force of Nature; 3. Seventh Generation (Free & Clear) 

Q: Eating organic and going out to eat is sometimes hard for survivors with a family and full-time job. I try to avoid fast food but everything feels so overwhelming. 

A from Carolyn Teschler: I totally agree, but just remember to do what you can and don’t knock yourself in the head! Life is messy and family life is crazy! Making just small changes like drinking water daily or eating more veggies even if they aren’t organic is a win! Be compassionate with yourself! 

Q: Any resources I can use to improve my nutrition habits?

A from Lisa Kline: There are some great options out there for you. Here’s some information on diet and nutrition. 

Q: Can we clarify the comments about sugar? I was told by a cancer nutritionist that this is a myth. Obviously, too much sugar and refined white sugar are unhealthy. But the idea that any sugar is dangerous for cancer — is that medically validated? 

A from Jamie DePolo: In this podcast, Hillary Sachs, an oncology nutritionist, discusses sugar. You can read the transcript if you don't want to listen to the whole thing. See more by reading “Sugar and Cancer” from Oncology Nutrition.

Q: Wait, the 'sugar feeds cancer' tale is a myth; glucose is primary energy for all cells, not just cancer cells. The pet scan is because cancer cells rely on the fdg in the glucose/liquid they inject, right? 

A from Jamie DePolo: You are correct. Glucose feeds all cells. See more by reading “Sugar and Cancer” from Oncology Nutrition.

Q: I had to stop my letrozole treatment in November due to debilitating side effects, primarily musculoskeletal.  I am still dealing with a tendinitis, carpel tunnel (which I had successful surgery to address 6 months prior to my mastectomy).  I am afraid to start a new AI and afraid not to.  Will these side effects eventually go away?  My cancer was lobular stage 1 grade 1b, are there data on recurrence rates based on stage and grade without AI treatment?? 

A from Jamie DePolo: Did you talk to your doctor about switching to a different medicine? Some people switch to a different AI and some switch to tamoxifen.  

A from Jen Uscher: You may want to read Breastcancer.org’s page about hormonal therapy side effects and how to manage them. Also, we have tips for people who are struggling with their hormonal therapy treatment.  

Q: Any suggestions for survivorship resources or support groups for breast cancer survivors (books, sites, people/orgs to follow online)? This webinar is great and has been helpful.

A from Charlene Abrams: Try Breastcancer.org virtual community support groups.  We meet on Zoom every Friday and every other Monday. 

A from Jen Uscher: Check out Breastcancer.org’s survivorship resources.

Q: What resources are available for cancer survivors who need to lose weight?

 A from Lisa Kline: Here is some information from Breastcancer.org on diet and nutrition.

Q: Ever since I started Letrozole (2 years) I have high cholesterol now. I have never had high cholesterol. I eat a very healthy mediterranean diet and exercise.  Is this a common side effect? I don’t want to take another drug to lower my cholesterol! 

A from Jamie DePolo: Yes, unfortunately high cholesterol is a known side effect of letrozole. You may be able to switch to a different AI. Definitely talk to your doctor.

 Q: I have not done any support groups yet. I am not in active treatment anymore. Is there a Breastcancer.org support group for me? 

A from Lisa Kline: We would love to help you find the right support group for you. Here’s some information on the groups that we’re running each week. 

Q: I feel like I am carrying the emotional labour of my family. 

A from Lisa Kline: You’re not alone in feeling this way. We have some resources on Breastcancer.org.  You might also benefit from community support by joining one of our groups. 

Q: What follow-up tests are recommended for women who have undergone bilateral mastectomy with flat closure? Is imaging (ultrasound and/or MRI) beneficial or is physical exam sufficient? 

A from Jen Uscher: Most people who’ve had a bilateral mastectomy don’t need to get routine imaging tests (such as with ultrasound or MRI) to screen for breast cancer recurrence or a second breast cancer. However, it makes sense to ask your doctor what they recommend in your individual situation. For anyone who has been diagnosed with breast cancer, getting regular physical exams of the breasts/chest is recommended.