It’s OK Not To Be OK: Mental Health and Breast Cancer

Dr. Marisa Weiss: Thank you all for joining us to talk about breast cancer and mental health. This is a critical issue for everyone going through this diagnosis. For many people, not just after the diagnosis, but through treatment, and well beyond that time. Because breast cancer is more than just a physical disease. We know that a diagnosis can have a deep and lasting emotional impact. Your mental health matters every step along the way. Now, more than ever, it's important to remove the stigma and talk openly about these complicated struggles.

Today, we'll discuss how mental health issues can take hold, how to reduce anxiety, stress, and manage your fears. As a breast cancer survivor myself, I know firsthand the strength that it takes to face the day when your mind is preoccupied, focused on the changes to your body, your relationships are strained, some disappear, and some get fortified. Or you're worried about the future. This is all on top of the stress from navigating treatments, the cost of care, living with uncertainty, keeping up your job, your health insurance, getting it, caregiving responsibilities, and more.

With compassion, honesty, and hope, we want today's webinar to remind you that you're not alone. There are many healthy ways to cope. Many of these things are skills that we never had, and we don't know how to learn them. But that's what today's all about. Whether you're in treatment, you're finished treatment, working on survivorship, you're living with metastatic breast cancer, or someone simply just wants to learn more, we're grateful that you're here.

First, I want to thank our generous sponsor, Pfizer, for making this program possible, and for their ongoing support. We are joined today by an inspirational group of speakers. We have Loriana Hernandez-Aldama who's an Emmy Award-winning journalist, author, two-time cancer survivor, global patient advocate, podcast host, and the founder of ArmorUp for Life. Loriana will be moderating our panel discussions today. We're grateful to have partnered with her and her organization on this webinar.

First, Loriana will talk with Martha Gamez-Smith, Allison Ko, Carolyn Teshler, and Tiah Tomlin-Harris. These incredible women have so much wisdom, heart, and encouragement to share. We thank them so much for their generosity in sharing.

We're honored to have Dr. Stephanie Ross here to offer her professional expertise. Dr. Ross is a clinical health psychologist and founder of Illness Navigation Resources. She's also an assistant professor at Northwestern University Feinberg School of Medicine. Dr. Ross specializes in coaching entire families through complex medical decision-making, medical crises, and the aftermath of medical trauma. As an expert in psycho-oncology, she has helped many people with breast cancer, and other types of cancer for more than 25 years. Thank you so much, Dr. Ross, for joining us.

Now it's my pleasure to welcome back our good friend and partner, Loriana Hernandez-Aldama. Loriana, I'll let you take it from here.

Loriana Hernández-Aldama: Dr. Weiss, I first have to say, what a privilege it is, every time I get to join you, be in the room with you, and on the stage with you, virtually, however it is. You as an oncologist, a survivor, and all the work you're doing that you get it. We are so grateful for you, so thank you.

Dr. Marisa Weiss: Oh, thank you.

Loriana Hernández-Aldama: Thank you for having me. I know you had a busy day in clinic. The fact you're here, and it matters to you to help other people mean so much to all of us.

I am honored to have this important conversation. It's not just critical. It is deeply personal to me to be here. I've been very transparent that I myself suffer with depression, with anxiety, PTSD after two cancer journeys. Many of us have said, "It doesn't end when the treatment ends." For many of us, that's when it actually starts up.

Today, I say to anybody in the audience, if you've ever cried alone in your car, and had just a meltdown because you felt misunderstood or had a panic attack in the grocery store, you are not alone. I've been there, many of us on this panel, people in the audience have been there. It is time we talk about it.

We don't share our stories because it's easy. It's not. We share it so someone else like you could feel less alone. If you are carrying this pain in silence, I get emotional thinking about it because I carry myself a lot of pain in silence, maybe today is the day that you just put it all down, and just for a moment just breathe, and know that It is OK Not To Be OK. We're excited to have all of you here. This is such a needed discussion.

Before we dive in though, I want to take a quick poll. Did your doctor prepare you for the mental health impact of breast cancer? Yes, no, or I'm not sure.

Okay. I'm going to clear that from my screen. As you vote, as they tally the votes, it's my pleasure to welcome our fantastic panel, Tiah, Allison, Martha, and Carolyn as Dr. Weiss mentioned. Thank you all so much for being here. I'm going to give it a second so we can check in with the votes, and see what the numbers are, if they've come across our screen or I'm getting it. So far, 84%. I know that all of you probably have shaken your head. This is no surprise to any of us. We're not saying anything about the doctors who did not prepare us because often, this is why we talk about patient-centered care. This needs to be addressed. It's not just the physical fight, it's the mental fight that we have to all face. 84%, which is overwhelmingly, "No, we were not prepared."

We could talk about mental health. We could have a whole workshop on this, because we all have so much to say for hours on end. But today, we're going to talk about validating, and accepting our emotions, the self-image, the relationships that sometimes blow up, the ghosting we talk about, the scan anxiety, and ways to cope. We also will talk about the ways to cope, and find resilience.

As a reminder, we will leave time at the end for questions. Feel free to ask, put your questions in the Q&A feature at the bottom of the Zoom screen, but let's just get started with the title It's OK Not To Be OK. We all talk about this. We're like, "This has to be the title." Saying that we have to just normalize the range of emotions that we're going to feel after a cancer diagnosis. The problem is, those who haven't been affected sometimes are like, "Why have you not gotten over it? You're done, right?"

Tiah, Allison, Martha, and Carolyn, to kick it off, I have three questions. I'm going to go down the line with each of you with these three questions. Then we're going to just have this lively discussion. We're going to say first, what is the mental health struggle you deal with that many others can relate to? Then if something helps you cope, share what it is. The third thing is, we'll all get a good chuckle because we're a community who gets it, what is something someone said to you that perhaps just wasn't so helpful to your peace of mind? Like someone has said to me, "Hey, you look good for having had cancer twice." I know we all have those stories.

Tiah, I'm going to start with you. You were diagnosed in 2015 with triple negative breast cancer. You turned that pain into purpose. But let's start with the pain, the emotional toll.

Tiah Tomlin-Harris: Yeah, that's a great question. Thank you for asking that question. When I think about the mental challenges that I've had, people look at me and say, "You're 10 years out." This year marked 10 years of me being out from when I was initially diagnosed with breast cancer. But I'm a two-time overcomer of triple negative breast cancer. Not a day goes by when I don't think about cancer. Not a day goes by when I don't think about, "Could this happen again?"

As a woman of color, as a Black woman, seeing the statistics, hearing the stories of women that unfortunately don't make it, hearing those stories, and seeing those things, it is very challenging. I would also say, with the statistics and hearing about the medications just not working for us, and things of that nature, again, not a day goes by when I don't think about it.

What do I do to cope? Oddly enough, I've actually thrown myself back into the community. Some people run from the community. But for me, helping others, looking at my own journey, my own story, and being able to share that with others, and saying, "Listen, I went through this. I know what that feels like. Allow me to hold your hand through this process." Those are the things that actually help me to cope.

I would say one more thing is prayer. I have stay firm on prayer in faith, because I know that's what actually got me through when I was diagnosed, not only the first time, but also the second time.

Then your third question, what was the crazy thing that someone has said to me? When I was first diagnosed, I was under the age of 40 when I was first diagnosed. I shared with someone that I felt like I could talk to because they had been diagnosed with breast cancer, and they shared their story. I told them I was diagnosed with triple negative. They said, "Oh my God, you have the worst kind of cancer there is." I was like, "I can't believe they said that to me." It really caused me to shut down in that moment because I'm like, "You're a cancer survivor. I don't want you to tell me that I need hope. I don't want to hear despair." Yeah, I would say that was probably the craziest thing that was said to me on my journey.

Loriana Hernández-Aldama: There's a lot of times, people don't think before they speak, and we need hope. This conversation is even good for people who haven't been affected by cancer. But I'm surprised that it was somebody who had gone through it before.

Allison, I want to go to you. Diagnosed in 2019 with triple positive metastatic breast cancer, you shared with me that growing up in a Chinese American household, mental health was stigmatized to go get help. Having gone through that, it was hard to ask for help.

Allison Ko: Yes, definitely. My sister and I were children of Chinese immigrants. It was like living in two different worlds. Our parents always thought everything we did was too American. Mental health is definitely something that was stigmatized. It's almost like a shame or craziness. It was never talked about. We were also raised in the age where children are meant to be seen, and not heard.

My grandmother actually committed suicide. This is when I was 19 years old. This started my whole mental health journey. In college, I had to see a therapist because I was flunking out of school. I just learned that I had to do this for myself. I didn't have to have the approval of my parents. I just have always been focused on finding a therapist. I always want to say to people, finding a therapist is so important. I feel bad when someone doesn't have a good experience the first time. Because it's like dating. You have to find someone that you vibe with, and don't give up because eventually you'll find a therapist that resonates with you.

Loriana Hernández-Aldama: Your way of coping is finding a therapist. The challenges that you face is being Chinese American, and having mental health stigmatized. Before we move on, and there will be a lot of time to talk, what's the one thing someone has said to you that really didn't go over well that maybe they didn't think before they spoke?

Allison Ko: Definitely just, "Oh my God, my aunt died from that." Or, I have actually had someone tell me that I had the good kind of cancer after I told them I had metastatic (stage IV) cancer.

Loriana Hernández-Aldama: Yeah. We need to have just a whole running list to tell people. These are things you do not say. There's not the good, the bad. We're all fighting. We're all here together. Tiah, it really resonated when you said that there's not a day that goes by. I tell my doctors, "Look, when I put my feet on the ground, and my feet are on fire, or I can't make it up the steps to wake up my son in the morning because of back pain, and I have PTSD, every second of every day, I'm reminded of cancer. Not because I want to, some of the times, it's the long-term side effects."

Martha, we'll move on to you. You faced breast cancer twice. First with triple negative breast cancer, and now, you're facing a new breast cancer diagnosis, a different type. Just a few weeks ago, you've underwent a mastectomy.

Martha Gamez-Smith: Yes, I did. Three weeks ago tomorrow, I had my bilateral mastectomy. In my 40's in 2011, I had triple negative. I tell you, the way that I dealt with it is I thought it was an anomaly. I'm just going to just go through that, and just get on the other side. I hated the color pink. I'm like, "No, this is just an anomaly."

This year, in January, I was diagnosed with estrogen positive in my right breast, the opposite breast. This time, I was mad. I was mad, and really, really just shocked, which is I think that I responded in the way that people typically respond the first time. The first time it was a challenge. The second time, this time around, I said no. It was very, very just jarring for me.

Loriana Hernández-Aldama: The mental toll that it's taken on, can you tell us at all?

Martha Gamez-Smith: Yes. The mental toll was, I'll never forget, my daughter and my husband said, "You need to go see a therapist." That's how I found the Breastcancer.org support groups. That yes, much like Allison, my family's just, "You're supposed to suppress those feelings. You're not supposed to feel depressed. That is for the weak." I had to find an outlet. The Breastcancer.org support groups are the best. That was my saving grace for me.

Loriana Hernández-Aldama: If there's one sentence or one thing you want to share, I know that's the best way that we've all seemed to say that we've coped in Breastcancer.org is doing amazing job with their support groups. Is there one takeaway or one thing that someone said to you that you're like, "Why did you say that?"

Martha Gamez-Smith: I'm wearing a wig, obviously. One of my family members said, "Oh, put a wig on. I don't like seeing you with a bald head." I'm supposed to somehow change my look to make somebody else feel better. This is not the time to do that.

Loriana Hernández-Aldama: I remember, and I'm sorry, someone said that, "Even my mother who didn't mean to say something like that when we were in the grocery store was like, 'Put a wig on because people were staring.'" Sometimes that resonates. It just stays with you and lingers. It just causes more trauma to you.

Oh, Carolyn, I don't know if you got to the third question, by the way. Did you get to the third question about what someone has said to you? 

Carolyn Teschler: Oh, okay. Yeah. The comment that was made to me by a close family member was, even though I had a spiritual practice, which they did not agree with, they asked me if my cancer diagnosis had made me rethink my choices of religion.

Loriana Hernández-Aldama: Actually, I want to back up because I didn't even get to your whole question. Let's start over. I want to introduce you again, Carolyn. You were diagnosed with about a year and a half ago at stage III breast cancer. You've since retired, and become an advocate for everyone affected by breast cancer.

Can you go back, and tell me what are the challenges that you face? I know it seems that you're coping through advocacy because it seems very cathartic for many of us. 

Carolyn Teschler: Yeah. The challenge I think that definitely played a part mentally, mental health, was that I had a loss of identity. I couldn't work anymore. I loved being a high school librarian and teacher. I couldn't be the mother and the wife that I was. I couldn't be all of these, the yoga teacher that I was. I couldn't be all of these things that I had identified as. That really took me a nosedive into depression. That leads to how did I cope with all of these?

As Allison mentioned, finding a good therapist is really key. The Breastcancer.org organization has been fantastic. But going back into getting into my yoga practice, teaching again, I am a certified yoga teacher, so I now have that. Also, going into building that community of volunteerism through the Livestrong Program at the YMCA, which is fantastic. Really building that community through my spiritual practice, my yoga practice, and my volunteerism has been really uplifting.

Loriana Hernández-Aldama:

Thank you all for all the advocacy you do. I know we are one community. For everybody attending, we are here for all of you. If you want to join us as advocates, as Tiah said, some people run from it, and that's okay. However you choose is best for you to cope. For me, it's cathartic. For many of us, it is.

I want to move on just for time's sake to body image. Body image is such a big topic for many of us, myself included. It can be hard to look in the mirror, and see how our body has changed after breast cancer diagnosis. Not a day goes by, five years later that I looked in the mirror after a shower, and I am like, "Who am I?" My breasts are gone. The nipples are gone. I cry a lot.

Anybody just jump in on how you feel. Have you struggle with a self-body image or not? What has helped you through it? Carolyn?

Carolyn Teschler: Absolutely. Having still dealing with chronic pain where my lumpectomy was, and where the lymph node dissection was, I have pain every day. Again, it's hard for people to identify it, because it's not like I wear it on me. I don't have a wound. It's not seen. Yet people like you were mentioning earlier, they just say, "Oh, you're over it." I feel pain every day.

How to cope with that? Number one, just doing something physical to feel strong. I may not be as strong as I was before, but just that constant, that self mantra of having strength internal, and external strength, even if someone doesn't see it. Also, having a myofascial massage therapist that knows and understands myofascial pain, and how that operates in the body, I think, is really important.

Loriana Hernández-Aldama: Yeah. For me, movement is medicine. When I tell someone, "I can't have a meeting," or, "I can't do this because I have yoga," or, "I need to walk," it is for my mental wellbeing, and physical wellbeing. Because the more I don't walk, the more pain I'm in.

Carolyn Teschler: I think it's not just mental. Physical, it's mental movement. Being curious, exploring things, really delving into life.

Loriana Hernández-Aldama: Anybody else want to jump in, and talk about the body image? If you've struggled or not, and how you're coping?

Tiah Tomlin-Harris: Yeah, I'll jump in. Mine is actually not the physical body image, but I would say, still dealing with the side effects, dealing with chemo brain, dealing with neuropathy, it's still an image that I don't see myself as the person I used to be. It's still a struggle. I want to put on my heels. I want to go out and have a good time. But because I'm dealing with neuropathy, and again, I'm 10 years out, those are things I can't do anymore. The person that I used to be, I'm not that person anymore. Sometimes, I grieve the person that I used to be.

Loriana Hernández-Aldama: I know. I've had a therapist tell me many times, "You need to grieve who you once were, and embrace who you are." Sometimes, I have the days I'm mad. I'm like, "I want to be that person. I don't want to grieve that person." It is a struggle. But again, it's the movement for me that helps.

But Tiah, how have you found that? How have you been able to cope with it?

Tiah Tomlin-Harris: Yeah, I try to find other things that I can do to still enjoy life, to still go out, enjoy my husband now that I'm married. Those are the things that I try to do to cope since I can't do the things that I used to do. But it brings me joy. It really brings me joy to be able to still do things that I love to do. I'm just having to do it different.

Loriana Hernández-Aldama: Yes. When I see people dressed up in heels, I'm like, there is no way. My feet are on fire all day long. I'm like, "I had to change every approach." Even when you go out to events with friends, you're like, "I can't be in the heat that long. I can't do this." I feel like I live in a world of cancer.

For me, it was about transparency. I had to start being transparent with my friends, and tell them all the things I couldn't do. That I wasn't trying to be this Debbie Downer person. Have you found any of you, Martha or Allison, just being transparent if you've had struggles with your self-image, talking to people around you?

Martha Gamez-Smith: Yeah, I have been very open about just my journey with even my co-workers. I think they've appreciated that. Just that I'm going through mastectomy. Just how, not scared, but just maybe looking forward to what that was going to feel like and look like. I think that that has allowed them to ask questions that they would normally ask other people. I can't tell you how many of those were men that came into my office, and asked me questions. I think it was a bit of a service, not knowing that I was doing that. For me, that actually helps, is to be there.

Loriana Hernández-Aldama: You've certainly led us into the conversation of relationships. After a diagnosis, we know relationships with friends, family members, partners, co-workers, like you've mentioned, they can feel supportive, but sometimes also disappointing, and everything in between. I want to talk about the toxic positivity when people are overly optimistic like, "You are a warrior. You've got this," and sometimes blind to the reality of your situation. Or then the ghosting. I can't tell you. I'm sure you guys have been through this, of girls I should say. How many people who've ghosted you because they were scared of your diagnosis, and what you were going through? They just disappeared.

Please share. Any of you, jump in. What has your experience been? How have you been able to save those relationships or open the door for that conversation? What do you say to the audience listening today?

Allison Ko: I have stuff about toxic positivity. It would be like during my original cancer journey through chemo, people were telling me, "You have to think positive. You have to change your mindset. It's all in the mindset. My friend's wife has stage II breast cancer. She's doing great because she changed her mindset." Here I am, thinking of the statistics. Metastatic breast cancer, when I was first diagnosed in 2019, according to the research from METAvivor, 18 to 22% of women live past five years. Nowadays, today, that current statistic is 30% live past five years. It's gotten better.

But the toxic positivity, I would just confront it head on. In the beginning, I would not say anything. But now I say things like, "It's easier to change your mindset when you have a 99% survival rate," which is what early stagers have. I just try to address it now instead of holding it in, and internalizing it.

Loriana Hernández-Aldama: But still, at times, I'm sure it can be frustrating trying to justify, and explain ourselves. But this is why we have the awareness that we're doing, so we can educate others, and amongst ourselves as well.

Who else wants to jump in about ghosting? Anyone have a story about ghosting? Carolyn, you were nodding your head.

Carolyn Teschler: Oh, yeah. Yeah, definitely. It just blows my mind because it's interesting because those that you would think would be the closest and most supportive of you, aren't. They don't step up. Like in your book, you mentioned getting that pit crew. That is so valuable to us when we were in the trenches of our treatments.

But yeah, I had a very dear friend. It didn't happen necessarily during my treatment. It happened after my treatment, which I thought was really interesting. I wasn't prepared for that. Mentally, I didn't understand why. Again, talking with my therapist, the phrase that I rely on a lot is to adjust my expectations. All the time, adjust my expectations. So much so that I know what to expect of myself.

But even then, I need to shift that expectation that I have, because I expect other people to act how I would act. I can't rely on them to do that. I thought that was very, very helpful to deal with ghosting. Because I can't understand why they do it if they don't talk to me about it, because there's not a conversation. But I can adjust my expectation of how I deal with it, and my expectation of others.

Loriana Hernández-Aldama: I had most people ghost me when I had leukemia, before I had breast cancer. I was in the hospital for a year. But I would call people up, and call them out. Maybe it's the reporter in me. I'm like, "Hey, where'd you go?" They were like, "Huh?" I would cry to them. Then they would say, "I didn't know what to say. I'm worried you're going to die. Or I'm worried this is going to happen." But for me, maybe it was just I felt like I was on a story. I put them all on the spot, because I didn't think that the people who were not the people closest to me would disappear, and people who knew me maybe from being on TV were the ones who came to my rescue. So much education that needs to go on around that.

Martha Gamez-Smith: That is so true. You're absolutely right about that, Loriana, calling people out. I try to give them some grace that maybe they don't know what to say to me. I remember people saying like, "Oh, prayer's for you." I'm like, "God." There's some things just that you just don't want to hear that are repetitive. There's the canned responses. Just hearing them use canned responses tells me that they don't know.

Sometimes, I think I'm going to write a book that says, "Don't ask, let me know what I can do for you. Say, I'm coming over with some that you all love. That you like potato chips. I'm coming over with some chips."

Loriana Hernández-Aldama: Yeah. I used to tell people when they would ask. I said, "Just text me, and say, 'I'm thinking of you.' No need to respond." Or something positive because I don't want to hear about your aunt Martha, and whoever who's now running marathons after her treatment. I can barely walk a mile or whatever. Sometimes, for me, transparency was best. But I know, it's not always the case for everyone.

I want to go back to, we're still on the body image topic, and talk about the relationships. I know if anyone's willing to comment. I'm happy to be transparent that for me, relationships and the intimacy is a challenge. It affects your marriage. Then you need counseling. Nobody talks to you about the impact of the drugs, and the sexual intimacy impact with the whole body image, and the relationships. It all gets messed together. If anyone wants to comment on that before we move on, jump in.

Carolyn Teschler: Yeah, actually, that was something I wanted to bring up because sexual health was like a taboo topic. I asked my oncologist about it. I asked my GP about it. They were so either, I don't know whether it was uninformed, embarrassed, I really don't know. Except someone in my Breastcancer.org group suggested, "Hey, why don't you go, and see a urogynecologist?" I'm like, "I don't even know what that is."

Reaching out to a urogynecologist that led to sexual health discussions, and eventual treatment of some things to help with that area. Which again, you never know what you don't know until you know you don't know it. 

Loriana Hernández-Aldama: Tiah and Allison, I want to have time for both of you to jump in on these conversations too. The next topic we're moving on to is scanxiety, the term we talk about when we describe the fear we have before, during, or after the scan. Can anyone share? Can either of you share about scanxiety, how it's impacted you? Do you have a mantra or something you do to help calm those fears? Tiah?

Tiah Tomlin-Harris: Yeah. I would say, again, being further out when I would have to go get a scan, the heart racing comes, the sweaty palms happen, the fear starts to kick in. I have to keep reminding myself, "Girl, you're 10 years out. It's going to be okay. You're going to be okay. You're going to be okay." I have to keep speaking to myself. Sometimes, I'll put on some music to distract me, and to do something I love to do, which is dance and sing. I have to find things for me to do to help.

But I remember, when I first got married, my husband was not a part of my journey at all. He's never had any experience with cancer. I remember, my first scan that I had to have after we got married, I was okay until the night before. I just broke completely. He just didn't understand. He was like, "What's going on? Why are you crying? You're fine. You're okay." But I was just really afraid that, "Gosh, what if this comes back? Here I am. I'm married now. I don't want you to have to experience this. You've never experienced it. I don't want you to have to go through this."

He just hugged me, and held me, but he really just didn't know what to say or what to do because he had never experienced it. I think just for me, it was just finding something that I love, and I enjoy to help more so distract me. Of course, meditation and breathing treatments right before I actually go in the room to get a scan. Yeah.

Loriana Hernández-Aldama: I have to do a mantra to say, "I'm strong, I'm brave, I am healed, I'm cured." I have to just repeat that to help me cope. Because I feel like I'm a different person the week before. I'm not a nice person because I cry a lot that week.

We only have about five minutes left. I want to get to the growth, because we have talked about all the challenges we face. I hope that those of you listening are not in your head, because we're in this together. Again, you're not alone. But there is growth that we've come through this. I call it the PTG, the post-traumatic growth. It's our final topic. We want to talk about ways that you found to balance the personal growth or get through the day, talk about the support groups. Each of you have somewhat touched on the support groups, if there's certain medication, cooking, or what may help you. Jump in. Martha, I see you. If you were taking some notes, is there something you want to add in?

Martha Gamez-Smith: I am. I think for me is just, I never saw myself as an advocate. I think that closing the gaps on just being an advocate for doing some research on when we are faced with a decision to have a lumpectomy or mastectomy, how do you make that decision by yourself? How do you do that for the first time?

For me, my growth is that this time, I am present. I am aware. It is going to be a lifeline for me to become an advocate, and to really serve others that need it, that need it. Because it is a brotherhood and a sisterhood. Because I know I get breast cancer as well, but that is my growth. That is something that this has really moved me this time. I'm not going to let that go.

Loriana Hernández-Aldama: For you, from what I understand, it hasn't come ... It's just a repressed cancer.

Martha Gamez-Smith: It's not a recurrent. It's a primary need.

Loriana Hernández-Aldama: Going through that fear, and then being able to share what you're going through with others to help them cope is really brave, what you're doing.

Martha Gamez-Smith: Yeah. I feel like technology has changed in 14 years, so much by leaps and bounds. But one of the things that I was just amazed at is the navigational nurse that rides along with you. That is such a saving grace. I didn't have that the last time. That's such a gift, such a gift. There are many opportunities to advocate. That's going to be my drive. That's definitely going to be part of mine.

Loriana Hernández-Aldama: Who else wants to chime in before we go? Allison, do you want to share about your post-traumatic growth?

Allison Ko: Yes. Just find your support systems. Definitely, I had to find a metastatic-specific support group because all those ladies know exactly what I'm feeling, thinking. I concentrate on my friends who support me, and have been with me since the beginning. Just forget about the ones who ghosted me. I like to do research, keep up with all the latest trends, and new treatments coming out.

Attending cancer conferences like LBBC has a metastatic breast cancer conference every year, it's inspiring to hear from survivors who've been living 13 years, 15 years, 20 years with metastatic disease. Also oncologists who say things like, "The longer someone lives with metastatic disease, the less the statistics apply." Those things give me hope. Self-care practices like meditation, EFT tapping, and journaling. Yes, just finding your support systems though is really important.

Loriana Hernández-Aldama: I'm glad that you found your space to not just grow and help others. I loved being able to talk to you about all the conferences that you're attending, and what you're doing. Carolyn and Tiah, do you want to talk about the growth before we go?

Tiah Tomlin-Harris: Yeah, I would say with my growth, I'll piggyback off of what the lady said. Of course, advocacy. In adding to what they said, for me, it's also the next generation. It's pouring back into these little girls who have dreams, and have hopes of being whatever it is that they desire to be. No one's talking to them about breast health or breast cancer. For me, it's only pouring into adult women, but it's going back into these babies. Once they start their cycle, "Hey, here's some things you can do to lower your risk. Have you heard of breast cancer? Let me talk to you about breast health so that you can start paying attention to your body. Because if no one's talking to you about it, I don't want, God forbid, it happens to you for you to be caught off guard. Now, you're challenged with some of the very things that we've been challenged with."

Loriana Hernández-Aldama: Great points. Carolyn?

Carolyn Teschler: Yeah. Again, like Tiah, there are so many things that have been mentioned here by the other ladies. Journaling, finding community, volunteerism, just physical exercise. I would say, just lump it up into whatever gives you joy.

Loriana Hernández-Aldama: Absolutely. To everybody watching, when we say advocate, first of all, you don't have to advocate if you don't feel like talking about it. But we all forget how much we know, and how much we've learned through our journeys that you can pass on to somebody else. Whether it's quietly one-on-one, talking to somebody else who's going through it. It's like passing the baton of how you can guide them, having a nonprofit or an organization, or going to conferences. There's so many ways to help with the coping.

Tiah, Martha, Carolyn, Allison, you all have been just amazing. I'm just honored to be in your presence as well. You all will leave the screen, but you'll stay on. I know you'll be in the chat. But now we're going to go on to the doctors so we can break down some of the conversations that we've had. Thank you all for your time, your advocacy, and just being a true sister.

All right. Now, I'm honored to welcome back Dr. Weiss, and introduce Dr. Stephanie Ross, so we can continue the conversation. Thank you both for listening to our conversation. We've had, really, a lively discussion of a lot of things that you probably are not surprised about, things that we've talked about. But we have audience questions to get to. But before we do, I want to get both of your thoughts. Is there anything you want to reflect on, comment on of something one of the panelists said, or anything that might need clarification?

Dr. Marisa Weiss: I would just say that it's amazing how much shared experiences there are. I went to my primary care recently, and asked her for a referral to a GYN because so many of them have retired. She looked at me, and she said, "You don't need a GYN. At your age, you don't need a GYN anymore." I was like, "Oh, that's an interesting response." She didn't ask me, "Why are you asking the question? What are you hoping for with this referral? Are you having an issue that you want to deal with?" I think it's really important to get the help that you need.

Loriana Hernández-Aldama: Dr. Ross, I want to get to your questions. Thank you. Dr. Weiss. Dr. Ross, for people who want to try therapy, this is from of the audience questions, is it important that the therapist has experience with breast cancer?

Oh, your mic is off. Okay, hold on. Can we hear you now?

Dr. Stephanie Ross: Hello.

Loriana Hernández-Aldama: Hi, you're back. Since I couldn't hear you, if there's something you want to clarify in addition to what Dr. Weiss had mentioned, please feel free to clarify, and then I can go to your question.

Dr. Stephanie Ross: What struck me was that every one of the panelists represented every patient who's ever walked through the doors of my office. They were so honest. Their stories really reflect mostly how all of the patients I have seen over the last how many years, feel. Especially the part about body image, it's not just about the physical, and the panelists pointed that out. It's about your body somehow failing you in some way. Not being strong, not feeling that you can participate in the things that you previously enjoyed, and then having to socialize that with your friends and family. That brings up a huge issue about privacy, why you have to tell, and who you have to tell. It's really important to think through all of how do you want to present this.

Loriana Hernández-Aldama: Exactly. Who do you want to share it with, and sometimes you feel like you just have to keep justifying your decisions to people about, "I can't do this." But let me get to the audience question. For people who want to try therapy, is it important that their therapist has experience with breast cancer?

Dr. Stephanie Ross: Ideally, in the perfect world, yes. It makes a lot of things easier. Because the struggles that breast cancer patients have are very unique in terms of fear of something that's actually a threat. A lot of therapists work with patients with generalized anxiety about perceived fears and imagined fears. It's a very different situation where there is an actual threat.

Techniques really vary. Whether you're treating a perceived threat or an actual threat, one that's ever present, and that your medical team has told you to be monitoring for all the time.

Loriana Hernández-Aldama: Right. There is a difference, like when you're worrying about something that could actually happen.

Dr. Stephanie Ross: Correct.

Loriana Hernández-Aldama: Like, "I've seen it happen to this person, and this person, so why can't I worry about it happening to me?"

Dr. Stephanie Ross: Also, we often will tell people, "Don't worry." Or everyone around them will say, "Don't worry about it, don't worry about it." When the recommendation now is from medical teams is, "We'll just monitor. If something hurts or something feels different, then call us. Then call us." It's very hard to tell someone, "Worry, don't worry, monitor, don't monitor." It's a threat, but it's actually not a threat.

Having someone who has a basic understanding of cancer or other medical issues is ideal. But as I say that, there are simply not enough qualified therapists in general. To find somebody who's specifically trained in this is a huge barrier. One of the things I really recommend is asking your medical team, going there first, and asking them for a referral. Because they likely have people that they've used before, that their patients have raved about to them, or they may know of the services in the community that are free or low cost that exist.

The other thing that patients can do is to educate their therapists. To ask their therapist, "May I educate you about my condition?" So that there's a basic understanding of the medical terms, the procedures, the recovery, the rates of recurrence. That can be really empowering. Because there are a lot of very skilled therapists out there. They just lack the medical knowledge. There's a lot on sites like Breastcancer.org that can explain the different stages of cancer, what hormonal therapy is, or what chemotherapy is, how long it lasts, what can occur. That can help your therapist to help you better.

Loriana Hernández-Aldama: Yeah. But sometimes, it's been frustrating if I've found someone who did not have cancer or a history of helping patients with cancer, and you spend your whole time trying to explain. You're like, "I need somebody who's had a history with cancer, who gets it."

I have one more question, then I need to go to Dr. Weiss. Fear of recurrence or fear of progression of people with metastatic breast cancer we know can be paralyzing. Can you give us quickly some tips for living in the present, feeling positive about the future?

Dr. Marisa Weiss: Yeah. I talk to my patients about the goal of a full life view at each when I first meet with them. The goal is to live a long life full of wonderful things, where you get to do what you want to do, when you want to do it, and remain the independent person as much as possible, right?

Loriana Hernández-Aldama: Right.

Dr. Marisa Weiss: Then that each day, if the day stinks or it's great, you want to wake up each morning and say to yourself, it's like a mantra, "Happy to be alive. Most likely I'm cancer-free or most likely, things are under control right now." Then you say, "I did everything I could that was reasonable, and effective to get rid of it or get it under control." Finally, "I'm going to do the best I can in my everyday life to be as healthy as possible, but no one's perfect."

When you see the list of things to do, like getting to and sticking to healthy weight, and all the things that you're supposed to do to lower your risk, and be as healthy as possible, like getting to and sticking to a healthy weight, exercising regularly, eating mostly a Mediterranean diet, limiting alcohol use, exercising, of course, stopping smoking, sleeping well, sharing your life, et cetera, all those steps take a lot of work, but you got to start somewhere. If you just get centered each day, and don't let each day just slip by without grabbing part of it, and enjoying some of it, then what's the point? The mantra I share and I encourage people to borrow it or use it, make it their own, is to help with that.

Loriana Hernández-Aldama: Okay. Tell me the mantra one more time.

Dr. Marisa Weiss: Waking up each morning and saying, "Happy to be alive. Most likely, I'm cancer-free, or I'm most likely, things are under control," depending on your situation. Then to say to yourself, "I did everything I could, or I have been doing everything I can to get this under control." Everything that was reasonable and effective to get this under control. "I'm going to do the best I can in my everyday life to be as healthy as possible. No one's perfect."

Loriana Hernández-Aldama: Right. You're nodding your head, Dr. Ross. What are your tips? I know it seems you're very aligned with this advice.

Dr. Stephanie Ross: I do. I think Dr. Weiss really offered wonderful advice about something you can do. Fear of recurrence is all about loss of control. We talk about things you can do. I do agree with Dr. Weiss that there's a lot of pressure to do all the things that can prevent a recurrence, and we also need to balance that with the need to enjoy life. If you are worried all day that you had a cookie, and that the sugar in the cookie is absolutely what's paralyzing you from going forward, it's really getting the reassurance from your medical team that you're going to try your best to do things in the service of staying healthy.

The other thing that people are sometimes hesitant about is psychotropic medication. People think that you have to be really impaired, really crazy that if you have a good reason for your anxiety, that medication won't help. Of course, you are fearful your cancer is going to come back. Therefore, why will medication help?

Medication can be super effective if it's medically advisable by your team, and you are evaluated properly. Because it's not always a one-shot deal in terms of tweaking that. But if somebody is preoccupied all the time with fears of recurrence, and it's affecting their life, it's affecting their ability to sleep, it's affecting their appetite, it's affecting their ability to engage in their normal activities of daily living, it is another tool that we have in our box that you can inquire about, and can be really helpful.

Loriana Hernández-Aldama: It's okay to ask. Say, "I might need medication," and to say, "To help me cope with this." You're not relinquishing control. Like, "I'm not doing things right because I have to ask for medication."

Dr. Stephanie Ross: No. It actually can help with some of the things that we want people to do. Namely, to have the motivation to do the things you need to do to take care of yourself. A patient who is crippled by anxiety oftentimes is unable to motivate to go out and go to that Pilates class, to go out and have a walk, to go out and explore other things that could actually help organically change their mood.

Loriana Hernández-Aldama: Oh, I understand. Some of the anxiety can keep you from going to a concert in a big crowd. What if something happens? Keeping you from going somewhere with your family. It's like, "Why do you always have to bring up what could happen?" Maybe that's the time when you can discuss medication with your therapist.

Dr. Ross, I have another question for you. Family and friends may not understand the grief that go hand in hand with cancer. What do you advise on how to explain it? Because as we've all shared, some of us are transparent about it, some of us don't know what to say. What is your advice on how to handle that?

Somebody reached out to me with cancer, and she was crying saying, "My husband told me, 'Why don't you just get over it? You're done with treatment.'"

Dr. Stephanie Ross: That's oftentimes how our culture sees medical illness. That it is we have something, we go for good medical care, and it gets fixed. When in reality, even if you have an early stage cancer, and it's essentially in remission, it's never a zero chance. No one's ever going to say, "You have a 0% chance that this will ever affect you." For most patients who've had any kind of treatment, there is some lingering. Whether it's a loss of a body part, a loss of their identity, there's a loss in their ability to have good sex, lots of things. When we deal in a culture where most things can get cured by a meme or a saying on Facebook, people really have a hard time struggling with, that something can become chronic.

Most people do understand, somewhat, about what grief is. If you have an interested person in your life who really does want to understand better, and the time to have these conversations is not when you're frustrated. It's actually another time when you're actually having lunch or having a good time, is to talk about how grief, it's a normal part of diagnosis because of all the losses. Loss of health, loss of confidence in our bodies, and loss of that sense in the world that this happens to other people, not us.

Loriana Hernández-Aldama: It feels that maybe you've let your partner down because you're not the same body, and same person mentally, physically, emotionally that they've married. I know. I struggle with that, and I'm not the only one. There's a lot of talk about that.

Dr. Marisa Weiss: There's a lot of shame. There's a lot of shame. Culture of people is like, "You got it because it's your fault, or you did something wrong. You have to deal with that."

Loriana Hernández-Aldama: Yes, yes. It's so important to have these discussions. Dr. Weiss, how can someone reduce their anxiety by improving their partnership with their care team? I know when I say this that, "You're an oncologist, and a survivor." I'm not happy that you went through breast cancer, but the fact that you probably get it more than anybody, and you see patients all the time, you're in clinic today, what do you tell your patients on reducing anxiety, and how to improve their partnership with their care team?

Dr. Marisa Weiss: Yeah. Everything is based on having a good relationship, and building trust. That's something we work hard on at Breastcancer.org, is to really put each person first so that each person can get the best care possible. That's true in the clinic as well.

The reality is I tell people, "You put so much time, energy, investment, and subjected your body to all these medical treatments, yet their mind is very connected to the body. Your mind is in fact your most powerful organ. We don't just need to take care of the body. We need to take care of your mind, your emotions, the psychological impact this has all had on you." Doctors don't usually have the expertise to do it. We count on people like Dr. Ross who is going to really help right the boat, and help people understand the assault that they had.

Because when breast cancer hits, it's like a major theft. It's like you got someone broke into the sacredness of your house, your home, and ripped something away from you, or stole something. That you are always traumatized by that. The stealing of joy, the fear of recurrence that can pollute and just mess up a good time, like you thought you were going out for a great family reunion, and what happens? Everyone keeps coming up to you like, "Oh, I'm so sorry."

Or what often happens, and I know Dr. Ross knows this, people come up, and they say, "Oh my God, did you hear that Sally died and left three children?" They will find the worst, most tragic stories. They will go out of their way to dump them on you.

I tell my patients, "Whenever you see a story coming, put your hand up like this, and say, 'Thank you so much for caring, but I can't hear another story right now,' because generally speaking, they're not going to be good ones."

I'm glad that Allison Ko, she went to a support group with people with situation like herself so that she could feel the real support, and not all these stories of people sharing that are traumatizing. I do think that the relationship you have with your doctor, and other doctors, doctors shouldn't feel like they have to know everything. For example, if someone shares something that it's really important that I don't really know anything about, I'll say, "That is a great question. I'm without the knowledge to help you, but I'd like to refer you to someone who really is very smart in that area who can help you." You don't have to be the everything.

Loriana Hernández-Aldama: I love that advice. When people come to tell me things, I said, "Not worth my stress club." I don't want to win an argument because it's not worth my stress. It doesn't mean I don't care. I can't hear about too many negative things. It throws my PTSD out of control. But I have to learn to set boundaries. That's how I've learned to cope. I'm glad you've shared other ways for us to cope.

We have one more minute. Dr. Ross, I want to go to you before we have our 10 minutes of questions that are coming in right now. I'm getting a lot in. Dr. Ross, tell me what you tell your patients who are depressed about changes to their body, and struggling with their self-image.

Dr. Stephanie Ross: Such a big issue. But first, I have to respond to Dr. Weiss' acknowledgement of people telling you the worst stories. The other things that people do now that we have the internet is tell you exactly what you should be doing with your medical care based on their cousin's, husbands, sister's, other cousin who lives somewhere else, "This is what they did, and that's the correct thing to do." In response to that, and it comes up all the time-

Loriana Hernández-Aldama: It does.

Dr. Stephanie Ross: ... you just can say, "I'm getting very good care. You know what? Thank you for that. I'll call you if I want that. I'd be happy to take that referral." That's one other way that cancer intrudes when you're just out for dinner.

But in terms of body changes, body changes are beyond your hair and your breast with this disease. You can have disfigurement. You can have weight changes. That's a huge thing. Most people around you will say, "You look great. You needed to gain a few pounds." Or, "Your new hair is amazing." I've heard that a lot from my patients about people who have great wigs.

It's not just about the physical, but it's also about this sense of identity that may be linked to the functions of your body. If you're a marathon runner or you're a surgeon, you get neuropathy, and you cannot have that identity anymore, it may not only affect your livelihood, but it may affect how you see yourself, and how you identify yourself in the world when someone says to you, "What do you do? Or, what are you interested in?" All of that abruptly changes. That's without preparation to evolve what your new identity is.

Loriana Hernández-Aldama: I'm going to jump in, because I know we have so many questions. What is the healthiest way to relate to non-cancer people who simply don't understand what this experience is like? Either one of you want to jump in on this.

Dr. Stephanie Ross: I think I'll fill that. One is, first to stop and think, do they really want to know what it is like? One thing would be to ask them to pause. Like, "Do you really want to know?" If they do, I think that simply explaining, and asking them to let you talk without interruption, what this is like for you.

You can also refer them to some resources, which there are many, that can at least explain the process better. But things that we know as professionals, that other people do not know is that you can still have effects of radiation after the final day of your radiation treatment. Letting people know the things that may not be fine temporarily or permanently is a really good place to start. But if they want to, is it just ...

Loriana Hernández-Aldama: Absolutely.

Dr. Marisa Weiss: Yeah. I would just add that you have your right to privacy. People are going to be coming up to you, prying, getting nosy, and you don't know the motivation behind their question. I was very careful throughout my life, professionally, my community, and among friends, I had scripted answers for the people in my life who were asked on my behalf. My sisters, they would say, "What does Marisa know? What is going to happen to Marisa? What's going on?" It was all scripted. Because it's my news to share, not someone else's. I don't have to just because you asked, you don't deserve an answer. If you weren't there delivering the lasagnas, pick me up, take me there, or whatever, and you come back at your convenience, a year later, and ask, "What was it like," I'm not interested in talking to you. I'm just sorry to be brought.

There's only so much energy that you have, and all those interactions consume a lot of your time, and energy. I really consciously decided to save my energy, protect my privacy for the people that I care a lot about, including my kids were being asked questions which it was very inappropriate, I thought. Even though they were adults, still it was uncomfortable for them, et cetera. Just because someone asked a question, doesn't mean you have to answer it.

Loriana Hernández-Aldama: Absolutely.

Dr. Stephanie Ross: Just because you're diagnosed with something, and you want to keep it private, you have the right to do that. I think in our world where everybody is posting their status minute by minute, if you don't want to share this, or you want to keep it within your immediate family, just because you keep something private, there's no shame in that.

Not everyone needs to go out. Maybe it was never your personality. Maybe you're a private person. Just because you have a common diagnosis does not mean that you need to tell everyone, tell anyone. It can be a need to know. Who's going to support me? But it doesn't need to be broadcasted. That's everyone's personal, based on their own personality.

Loriana Hernández-Aldama: Absolutely. Dr. Weiss, you mentioned that somebody who just came around a year later like, "Hey, how's it been?" You're like, "You know what? I don't know if I'm going to give you that energy."

We have a lot of questions, but Dr. Ross, do you ever stop feeling that you're living on a fault line? This is from one of the audience members.

Dr. Stephanie Ross: I think yes, and no. I think no. That once this is in your life, and you have something that's non-zero chance. No one can ever say, "I'm a 100% certainty." But we have to remember, we don't have a 100% certainty about other things that could happen to us, medically. To be able to give that analogy, it's not patronizing in any way to say, "Hey, you are living on a fault line every day." There's also other things that could happen. It tends not to make people more anxious. It tends to give them some perspective. It's really how often you go to that fault line.

I encourage my patients too, if they can, to do all their appointments in one month or their follow-ups not to be going to monitoring throughout the year if they're seeing lymphedema specialists, and they're going back to the radiation oncologist, to try and do it all at once, just to minimize the time, mental, and physical energy that you have to give to your disease on any given day.

Loriana Hernández-Aldama: I'm going to try to get two more questions in. Don't think that I'm trying to be rude today.

Dr. Marisa Weiss: Just add to that, the future is just a promise for all of us. If you reframe the living on the fault line, because I was worried about breast cancer every day for many years, that's an incentive to seize the opportunity. I buy raspberries for myself. It might sound trivial to you. But they're expensive. I love them. I decided, "You know what? Damn it. I work so hard to protect and cherish my life. I'm going to celebrate it with something special. That's just for me." But that's just something that's worth considering.

Loriana Hernández-Aldama: Find something that is special.

Okay. Regarding ghosting, my brother believes I'm putting poison in my body with radiation, and medication, et cetera. He and his new wife have severed all ties with me. Would you happen to have any suggestions or strategies? I am suffering.

Dr. Stephanie Ross: I think that's very sad, and also, not uncommon. Everybody is now a self-proclaimed expert. Patients need to have confidence in the choices that they make for their medical treatment.

Loriana Hernández-Aldama: What do you say to them? Then you go through the mental trauma that your family severed ties with you, because they don't support you, when it's your body and your life. How does she try to fix this?

Dr. Stephanie Ross: You reflect that right back at them. I hope we can agree to disagree on this. You have the right to manage whatever. Whether it's your health or any other personal choices in a way that you would like. "This is how I choose, and I hope that you can support me." Sometimes, relationships do dissipate in light of this. It's very unfortunate. But we also don't have to answer to everyone else's preferences, and priorities.

Loriana Hernández-Aldama: Dr. Weiss, go ahead.

Dr. Marisa Weiss: Yeah, a lot of people become evangelists. Just force you to do what they did. Like Dr. Ross said, what they did becomes their religion. There must be something behind that family members being so cruel and unsupportive.

I would say, go to participate in support groups. We have great ones at Breastcancer.org. Find other people in your life. Choose your family, build a family. Reality is, as we move through life, we always have to build, and bring in more people. Because people leave, people move, people have other priorities. You're always trying to bring people in, that bring an angle, a new bit, some extra sunshine on a cloudy day.

Loriana Hernández-Aldama: Okay, one more minute. Dr. Weiss, you might have the answer for this, because you also went through this with kids. How can I mentally prepare my kids when I'm still trying to wrap my head around what I'm going through?

Dr. Marisa Weiss: Your children are watching you. They're plugged into you. My kids were watching every move I made even though they tried to hide it. I led by example, and became as transparent as I wanted to. I tried to keep the dialogue open so that they would feel free to say things.

Sometimes, it's hard to hear what they have to say. My daughter told me later that it was really, really hard. That it made her very uncomfortable that she took care of me after my surgery with all those drains. It really made her uncomfortable. I'm like, "Sorry you felt that way." But I actually think that that was a good thing, that she experienced life that way. That I gave her the opportunity to participate.

I would say, keep the dialogue open. Keep the conversation going. Share things that you feel comfortable sharing. Give them space to ask a question. If you don't have the answer, say, "That's a really good question. Why don't you come with me with my doctor's appointment. But just know, I'm doing everything I can that's reasonable and effective to get this situation under control. I know that that's my job. Of course, I want to be here for you. I know you want me."

Loriana Hernández-Aldama: I know we're out of time. But also, if you have younger kids, for me, my son was two for my leukemia, and seven for my breast cancer. Trying to mentally prepare him was very challenging. I had to find the right time when I felt safe to tell him, because I didn't want to feel like I was lying to him.

Dr. Ross, you may have something to say on that. Then hopefully, they'll give me permission to go just a tad longer to let you answer that.

Dr. Stephanie Ross: I think it's incredibly important, as Dr. Weiss was saying, to be transparent. But also, to recognize what is developmentally appropriate for kids, what terminology to use, when to say, and what to say. One of the things that I've particularly interested is guiding parents. Because one of the things you do need to do during cancer is actually parent. It's not a choice.

There are resources available for helping you parent your kids through cancer, how to explain cancer to kids. They're out there. There's resources for kids who have a parent with cancer. There's a lot out there. You do not have to reinvent the wheel. Please reach out.

Loriana Hernández-Aldama: Dr. Weiss and Dr. Ross, you both have been amazing. Thank you for your guidance, for clarifying things earlier on as well. Just for your time for being here.

Dr. Weiss, thank you for always partnering with Breastcancer.org, always partnering with ArmorUp for Life because we're grateful for all the work you do, and all the support groups you have.

Thank you, again. This is such an important topic. We had a huge turnout. We want to keep doing this over and over to keep talking about mental health, so we can continue to raise awareness. We talked about incredibly important topics, and sometimes difficult ones from the emotional impact of a diagnosis and treatment, to the anxiety, to depression, identity, and healing.

If there's one thing I hope you take away today, it's that your mental health is just as important as your physical health. Deserve both care, compassion, and support. I'm saying, It is OK to Not Be OK. It's not a sign of weakness to ask for help. It is reality. Sometimes, you have to just share that. But you are being brave, asking for help, and being transparent about what you're going through.

A huge thank you, again, for all of our speakers, all of their stories, and insights. Thank you all for joining. Take care. We can't wait to see you again on our next Real Talk webinar.

Q: What can I do to help stop a panic attack? 

A from Jen Uscher: Thanks for your question. You might want to learn more about ways to manage anxiety, including using mindfulness techniques. This article has some resources and tips that could help.

Q: How to separate chemo side effects from menopause side effects? There seems to be a fine line between both. 

A from Jen Uscher: You’re correct that there can be a lot of overlap with menopause side effects and the side effects of chemo and other breast cancer treatments. Some of the ways of easing the side effects would be the same. Here is some info about managing chemo side effects and menopause side effects.

Q: I've had depression for years (taking meds) and was wondering if you have any suggestions or tips for combatting additional depression due to breast cancer. 

A from Jen Uscher: Have you explored other approaches to easing depression, in addition to taking meds? Some examples are working with a therapist who specializes in cancer, joining a breast cancer support group, or trying complementary therapies.  Also, getting more exercise is an under-recognized approach that can help.

Q: Why do I have body image feelings after reconstruction? 

A from Jen Uscher: It’s really common to struggle with body image after reconstruction/cancer treatment. You’re not alone. Have you considered working with a therapist who specializes in cancer and body image? A therapist could help you come to terms with ways your body has changed and reframe negative thoughts. This article has some tips on embracing a more positive body image after breast cancer.  

Q: Will you please talk about the difference between mental health stability during chemo vs. immunotherapy? I felt like I was losing my mind during chemo and have been struggling on my immunotherapy medication. I've reduced my dose although quality of life has been challenging. Thank you. 

A from Jen Uscher: Chemotherapy and immunotherapy can affect individuals differently in terms of mental health related symptoms. And it might be the case that other aspects of what you’re going through (including dealing with the cancer diagnosis and side effects from other treatments) are also contributing to your poorer quality of life. Have you tried not just reducing the dose of your immunotherapy medicine, but also looking into ways of treating your mental health symptoms? This article covers a lot of approaches to taking care of your mental health. 

Q: I'm a 3-time survivor as of last year. Anxiety is a major issue. I see a therapist and work on coping mechanisms, but it's never-ending. Thank you. 

A from Dr. Stephanie Ross: Anxiety following a cancer diagnosis is absolutely common. I am wondering whether your therapist has ever suggested a psychiatric consultation for medication for anxiety? It does not matter if anxiety has a “cause” — oftentimes medication can really help.

Q: I am done with treatments and am still going through revision surgeries. How do I get back to feeling like I did before? Is that even possible? How can I move on while having worry constantly hanging over my head? 

A from Jen Uscher: It’s very common for it to take some time to come to terms with everything you’ve been through and find a new normal. But as far as the anxiety and worry you mentioned…have you explored different ways of addressing anxiety/scanxiety?  

Q: How do you accept the words, “you are cancer free”? People say that to me, especially my husband, and he gets upset when I don’t say, “I am cancer free.”  I understand that I had a mastectomy, but it is hard to say “cancer free.” I am almost afraid I will jinx myself. Is it normal to be afraid to say those words and/or accept those words? 

A from Jen Uscher: What you’re feeling is normal. Some of the language that people use around this topic can be triggering. It’s ok to let people in your life know that you don’t like using the words “cancer free.” This article discusses some of the other terms medical professionals might use that mean roughly the same thing, such as “no evidence of disease.” 

Q: What are some strategies to deal with the following: I have completed chemo, undergone a partial mastectomy, and completed radiation. I am 20% complete with a year long immunotherapy treatment, and currently awaiting reconstruction/ other mastectomy. I often struggle with feelings of "I'm sick, but not sick... because the cancer is gone." But I also have increasing feelings of apathy toward a lot of areas in my life. 

A from Jen Uscher: It’s certainly understandable that you feel like you’re at an in-between stage, especially since you’re not finished with all of your main breast cancer treatments. If you’re feeling apathetic about some areas of your life, maybe try to cut yourself some slack because going through active treatment is hard and takes up a lot of your energy and strength. But if you’re feeling depressed, it’s worth seeking out mental health support (and perhaps a support group) if you haven’t already done so.

Q: Please address depression/fatigue/anxiety with Anastrozole. 

A from Jen Uscher: Anastrozole can be linked with those side effects. And other breast cancer treatments you may have received (and the stress from the experience of going through a diagnosis and treatment) can also contribute to those side effects. You might want to read this article that covers some ways of managing hormonal therapy side effects.

Q: I did better during treatment. I felt in control for 3 years. Dx in 2013. It’s the past 10 years post-treatment that I feel out of control and I struggle. I can’t get fear out of my daily life. People think I am so strong, yet I collapse in private. Everyday I live like it could be my last. It’s every single day. 

A from Dr. Stephanie Ross: This is so very common — patients feel they are being looked after all the time during active treatment. Get support.

Q: I'm due to start on hormone-blocking pills and I'm nervous about it. Any input? 

A From Jen Uscher: It might help to read about what to expect and possible ways of easing side effects in advance.  

Q: Hi everyone! breast cancer survivor here. Double mastectomy in 2022. Real rough, but I finally feel like I'm on the other side. I am a therapist as well who wishes to focus on this population in my practice. In which ways can Breastcancer.org help with that? 

A from Jen Uscher: I can tell you that there are a lot of people looking for therapists who specialize in breast cancer, and it’s great that you have personal experience to draw from. Maybe you could try networking with therapists who have this focus, to learn more about how they built their practices? You could find some by searching PsychologyToday.com, or by reaching out to local cancer organizations or cancer centers. You might also want to search for “psycho-oncology” or “psychological oncology” organizations and training programs online.

Q: I have only been diagnosed with breast cancer three weeks ago, but I don’t have any feelings about it. I just keep saying to myself that I am OK. Is this normal? 

A from Jen Uscher: There is no right or wrong way to feel about your diagnosis. It seems like a positive thing that you are able to give yourself reassurance that you are OK. But if you start feeling distress about your diagnosis (whichever forms that might take), don’t hesitate to seek out support.

Q: Any tips on how to handle people making dismissive comments or minimizing what we are going through? 

A from Jen Uscher: It can be hurtful and distressing when people make comments that diminish what you’re going through. It’s up to you as to whether you think it’s worth trying to educate these people so they can understand more about your experiences and how those comments are affecting you. Maybe if they are close loved ones or friends, it could be worth the effort. Either way, joining a breast cancer support group (virtual or in person) or talking with others with breast cancer on online message boards, etc. could be helpful…because they will really understand your experiences.

Q: Feeling guilty because I was diagnosed with DCIS, early stage 0 breast cancer. I'm certainly not as bad off as others, but still mentally struggling as I am getting a double mastectomy with reconstruction soon. Also, I hear a lot of "well at least you will have nice new breasts!" except looking at images it's clearly not the same and no nipples, so it's definitely hard to navigate through this. Any perspective from a DCIS "not as serious" diagnosis? I'm terrified of all of this. 

A from Jen Uscher: Even though some may view DCIS as “not as serious” as some other types of breast cancer, the truth is that going through any breast cancer diagnosis and treatment can be very hard. It’s common to struggle with mental health and decisionmaking after a DCIS diagnosis. Maybe it would help to talk with others who’ve been diagnosed with DCIS, so that you can gain the perspective on how they’ve had similar experiences and feelings?

Q: Make sure that people give you the right information and not the wrong information. A social worker/nurse gave me the wrong information when I was just gathering info and trying to figure out what I wanted to do. They told me that it would be taken care of and paid by the cancer foundation and insurance. Wrong! Past big bill from breaking of shoulder and now mastectomy cost is a lot. The administration told me to sell my car.  It has been hard to go through, especially when also looking for a job. 

A from Jen Uscher: Keep in mind that there are other organizations that might be able to help you navigate these bills and find out other options for getting financial assistance. For example, Triage Cancer and Cancer Support Community offer free financial navigation services.

Q: I can’t talk to any of my family or friends about this anymore. There’s no point. They want to help but I just feel like I’ve been talking about it for too long. 

A from Jen Uscher: Have you considered participating in a breast cancer support group so that you can talk with people who’ve had similar experiences…and who want to talk/share about them and help others?

Q: Please go back to the question about what to say to people when they say “you look great and normal, you’re fine.” 

A From Allison Ko: I struggle with this one a lot because on the outside nobody can tell that I have metastatic breast cancer. In the beginning, I would just say “I’m fine,” but nowadays I say things like “thank you, I’m not feeling so good today” and depending on who is asking I can share or vent how I’m really feeling.

Q: Tomorrow is my surgery day. My surgeon will not recommend a plastic surgeon for at least six months after my radiation. Is this normal?  

A from Jen Uscher: If you want to get delayed breast reconstruction (that happens sometime after the lumpectomy or mastectomy), it’s common for docs to recommend waiting for six months after radiation therapy ends. One of the reasons for this is that it’s important to wait for the skin to fully heal.

Q: I left my corporate sales job before diagnosis and am unable to perform in that capacity after surgery. Are there any resources for career options? I am 54 and am concerned about my employment options. Not having a job has really impacted me mentally. 

A from Jen Uscher: The organization Cancer and Careers offers a lot of good resources on navigating employment after a cancer diagnosis. 

Q: Any suggestions for dealing with the “shame” of even getting the diagnosis. Logically we ‘shouldn’t’ feel shame, but easier said than done. 

A From Jen Uscher: It’s really common to feel shame about a breast cancer diagnosis, but it’s worth trying to reframe those thoughts. A therapist who specializes in cancer could help. 

Q: How to cope with constant fear of metastasis? Every little ache or pain sends me into a worry spiral. 

A from Allison Ko: I used to live in fear every single day that my cancer was back. I was a hypochondriac before cancer. And yes, sometimes a headache is just a headache, but it’s a normal thought process for us to have these thoughts. I have a daily self-care practice that includes guided meditations, EFT tapping, affirmations, sound therapy on YouTube. I love Insight Timer’s cancer mediations. Trying to stay present and reminding myself that worrying about the future doesn’t change the outcome. The fear gets less and less and hearing other survivor’s stories gives me so much hope and inspiration.

Q: What are the side effects of radiation? 

A from Lisa Kline: Here’s an article that will explain possible side effects to you. 

Q: Any side effects that any of you experienced with Xeloda? 

A from Lisa Kline: Here's some info that will help you to understand the possible side effects of Xeloda.

Q: How do you deal with people telling you all the time that you are so strong even when you feel you aren't? 

A from Jen Uscher: People who say this may mean well, but it sounds like it might come off like toxic positivity to you. It might help if you can find some safe spaces (whether it’s in therapy, in a support group or message board, with certain friends who “get it”) in which you can express what you’re really feeling and share what you’re going through.

Q: I have stage 1, HER2 + in both breasts and chose to do a bilateral mastectomy. I feel like there is no community for me because I never needed chemo. But I am dealing with all the body and physical issues from this surgery. I have two more to get through. How can I find people like me to build community with? 

A from Jen Uscher: I think you’ll be able to find people with similar experiences (who didn’t need chemo, but who are still dealing with physical issues from treatment) in the Breastcancer.org discussion boards and virtual support groups (or in other online or in-person support groups). 

Q: I have found that most resources are available near larger cities etc., not so much so for me where I’m located in a very small town in the Deep South in Georgia. It’s super hard finding anything locally that really wants to help. As far as a therapist, what kind of therapist? Would a telemedicine provider really be beneficial or would in-person settings be better? I really am just spinning my wheels currently. I am 3.5 years since diagnosis of tnbc stage 2 and now in remission. But lost…. 

A from Jen Uscher: While some people do prefer in-person therapy, many find that doing therapy virtually is just as helpful. It can also be a lot more convenient. I’d recommend searching databases such as the one at Psychologytoday.com to see if you can find a therapist who provides telehealth appointments, is licensed to practice in Georgia, and specializes in working with cancer survivors.

Q: How do you start intimacy again after treatment? I'm at a loss at the moment to be honest. 

A from Jen Uscher: If you’re struggling with sexual health and intimacy after treatment, this article covers ways of finding support. 

Q: My challenge is this: I can tell myself I’m going to be ok over and over, but the reality is that I may not be ok. How do I retrain my brain? 

A from Carolyn Teschler: My therapist had a helpful image for me to retrain my brain.  Imagine your loss, fear, and grief as a mass in a glass container, and the mass fills the whole container. But over time, the mass doesn’t get any smaller, but the container will eventually, slowly begin to grow. The container, which is me, will gradually grow with new life experiences, new joys, new interactions. The mass of grief, fear. and loss does not go away; it will never go away, but I will grow as a person and absorb that loss, fear, and grief.

Q: My anxiety has been over the fact that my doctors do not share with me. I don't know what is coming. 

A from Jen Uscher: If you’re feeling like your doctors aren’t communicating enough and giving you the information you need, maybe it’s worth considering switching doctors. Another option: have you tried getting your questions answered by other staffers at your docs offices who might be more accessible (like nurse/nurse navigator, patient navigator, physician assistant, or others)? 

Q: I find that when I tell friends/family about my new diagnosis that I want to protect and care for others rather than being in the moment and allow others to care for me. 

A from Carolyn Teschler: I, too, was very independent pre-cancer, but when I shared my diagnosis and my friends wanted to help, I reframed my acceptance of others’ kindness — that by allowing them to show compassion, I am allowing them to grow and improve as a person. To deprive them of that show of grace, love, kindness, and compassion prevents them from deepening as an empathetic human.

Q: Where can I find information on nutrition specialized for cancer patients? This has been a big gap in my treatment. I did not have radiation or chemo, so I received little direction. 

A from Carolyn Teschler: I used (and continue to use) two cookbooks both by Rebecca Katz: The Cancer-Fighting Kitchen and One Bite at a Time. Hope this helps. 

A from Ella Chick: Check out this podcast interview with an expert who specializes in oncology nutrition, and this article with links to more info on nutrition after a cancer diagnosis.   

Q: You may be covering this later but my major problem is lack of sleep — I’ve tried everything, but survive on 3 to 4 hours a night. Yes, I would be lying if I said I am not concerned about cancer coming back. But I stay positive through exercise, music, art, and writing. Certainly a roller coaster journey if you are single with not a lot of support, but I have found some support groups and volunteer now. 

A from Carolyn Teschler: I, too, had horrible insomnia. Here are a few things I used to help me sleep: Golden Milk powder with turmeric and a little honey, CBD sleep gummies (high CBD and low THC), lavender foot balm, and I would also get up and journal to just write about whatever was making me sad or angry or whatever I was feeling at the time.

Q: How do I deal with brain fog due to exemestane and worry about recurrence? 

A from Jen Uscher: You might want to check out this article that discusses treatments for brain fog (which is also known as “chemo brain”, although it can be caused by other treatments besides chemo). Cognitive behavioral therapy is one of the approaches that can be helpful for managing fears of recurrence. 

Q: What is a nurse navigator and where would I find one? 

A from Lisa Kline: Here’s a helpful list of who’s who on your care team, including the definition of a nurse navigator and how to find one.  

Q: Any articles to address self-blame (i.e., am I responsible for bringing this upon myself somehow)? 

A from Lisa Kline: You may find it helpful to watch this earlier webinar on healing invisible scars.

Q: I’m happy to see the diversity on the panel. Some cultures don't find it easy to seek medical or mental help. 

A from Lisa Kline: So very true. Here’s a powerful story from one of our community members about the cultural stigma she experienced. 

Q: I keep having extreme anxiety attacks and depressive episodes three months after finishing treatment. What can I do to get better? 

A from Jen Uscher: I’m sorry you’re going through this. You might want to explore multiple ways of easing depression and anxiety…therapy, medication, complementary therapies, exercise. Here’s a resource guide that you can explore for ideas. 

Q: I just had a double mastectomy and will be seeing my oncologists on Thursday. When do you say that one is a cancer survivor and are cancer-free? 

A from Jen Uscher: This is a good question to ask your oncologist (it depends on your individual situation). You may want to read this article, which discusses what medical professionals mean when they use terms such as “cancer-free” and “in remission.” 

Q: I am struggling with taking estrogen blocking drugs. My risk is low for recurrence. Not sure if side effects are worth the insurance. 

A from Jen Uscher: You might want to read this article about making decisions about hormonal therapy.

Q: How can I mentally prepare my kids (daughter) when I am still wrapping my head around what I am going through? 

A from Jen Uscher: Bright Spots Network, an organization that supports parents with cancer, has some free resources you might want to check out for talking with your kids about your diagnosis. They also offer virtual support groups and other programs.

 Q: Can we talk about sleep? Since entering medically induced menopause and starting hormone inhibitors, my sleep has become fragmented and unpredictable. I used to get a solid 8 hours a night, but now I fall asleep only to wake up with my mind wide awake while my body still feels exhausted. I’ve tried prescribed sleep meds, melatonin, and even yoga — but I still struggle to stay asleep. I know sleep hygiene is so important for healing and even cancer prevention. Has anyone found something that works? 

A from Jen Uscher: Please check out Cognitive Behavioral Therapy specifically for insomnia (called CBT-I). Research shows that it works for a lot of people.

Q: What to do when a close brother ghosts you? 

A from Lisa Kline: Check out this podcast and this article on cancer ghosting. 

Q: I have small kids and not the best support system. I chose not to tell many family members. I have never felt so lonely. How do I not scare my kids but at the same time say I’m not ok? 

A from Jen Uscher: Many parents with cancer struggle with the issues you’re dealing with. You might want to check out the resources and virtual support groups offered by Bright Spots Network, an organization for parents with cancer. You could also connect with others going through similar experiences through Breastcancer.org’s virtual support groups. 

Q: Is it wrong that I find it liberating to share my cancer diagnosis because my testimony might help others? What should I be safeguarding with this choice? 

A from Jen Uscher: It’s great that you want to share about your diagnosis and experiences with cancer. People who talk openly about their diagnosis can help educate others, help those who have gone through similar experiences feel less alone, and reduce stigma. One place where you might want to be careful about what you disclose about your diagnosis is at your work/place of employment. The organization Triage Cancer offers a guide that covers some of the issues to consider about disclosing your diagnosis at work. Also, if you are sharing about your diagnosis online (for example, on social media) and using your real name/identity, you might want to fully think through all the privacy implications. Some people are comfortable having information about their diagnosis out there on the web indefinitely for anyone to see, while others may be concerned that they could face discrimination (for example, by potential future employers or others) or loss of control over their personal information.