×

Recognizing Cancer-Related Distress: Patient Perspectives

By Laura Chavaree

In August of 2021, Laura Chavaree of Blue Note Therapeutics was joined by our patient advisors Anne Marie Mercurio, Justin Birckbichler, Lewis Christie, Ricki Fairley, and Stacey Tinianov who shared their experiences navigating cancer-related distress.

Recognizing Cancer-Related Distress: Patient Perspectives

View the panel highlights and full video recording, or read the transcript below.

This transcript has been edited for clarity and accuracy.

LAURA CHAVAREE: Welcome everyone to our patient panel on recognizing cancer-related distress. I especially want to extend a warm welcome to our attendees and our panelists who we’ll be introducing shortly. I’m Laura Chavaree and I am a member of the Blue Note Therapeutics leadership team. Here at Blue Note, we’re developing prescription apps which are clinically validated digital medicines designed to help people living with cancer manage the unique burdens of cancer-related stress, anxiety and depression. Those on our panel today have been involved from the very beginning in the co-creation of our earliest products, some of which are in clinical trials as we speak, and we’re incredibly grateful for their partnership. Today we’ll be discussing the commonly experienced but under-addressed cancer side effect of cancer-related distress. As we go through our presentation and discussion today if you would like to pose a question for our panelists, please enter your questions in the Q&A. I think we’re ready to begin so I’ll ask Ann Marie to kick off introductions. Take it away, Anne Marie.

ANNE MARIE MERCURIO: My name is Anne Marie Mercurio. I live in New York. I was diagnosed with invasive lobular breast cancer back in 2006, and was treated through 2007. I went through the whole rollercoaster of the emotional fallout afterwards, and then switched to a caregiver role for both my dad and mom, although my dad passed away shortly after his diagnosis. But I cared for my mom throughout her treatment for metastatic disease until her death in October of last year.

LAURA CHAVAREE: Thank you, Anne Marie. Justin?

JUSTIN BIRCKBICHLER: Yeah, I’m Justin. I was diagnosed with testicular cancer when I was 25 years old, about five years ago. I just turned 30, or as I like to say the first anniversary of turning 29. But I found that there weren’t a whole lot of resources for young guys I think for the fashion show when you’re a senior you should do going through cancer so I decided to develop that. And that eventually turned into my website, which is called A Ballsy Sense of Tumor, because who doesn’t love a good pun? So I’m excited to get the ball rolling here on this webinar and see where it takes us.

LAURA CHAVAREE: Great. Thanks, Justin. Lew, take it away.

LEW CHRISTIE: Good morning, everyone. My name is Lew Christie. Unknown to me my cancer journey started on 9/11. I was a few blocks away from Ground Zero. I watched the planes fly into the Twin Towers. I was there when that happened and every day thereafter. I didn’t realize breathing in all that ash with its carcinogens would affect me because we were told that the air was fine. As a result in December 2012, I was diagnosed with leukemia (AML). I was placed on light chemo due to my age. I was 71 at that time. I was on chemo for 14 months when I was told that it would probably fail and I would need a transplant. So in March 2014, I received my first bone marrow transplant from an allogeneic donor, that’s someone who is unknown. It failed after six months. So in September 2014, I received the second bone marrow transplant from my younger daughter, and that’s considered a haplo identical transplant or haplo. A few months later, I was diagnosed with acute graft versus host disease (GvHD). I have many different symptoms from GvHD, which I’m still suffering from now. It was diagnosed as chronic. However, it is seven years later, and I’m still here, even though I was told twice that I had a year to live. Next month I’ll be 80 so I’m thrilled to death. I shouldn’t say that. I’m just happy to be here.

LAURA CHAVAREE: Thanks, Lew. Let’s see…Ricki?

RICKI FAIRLEY: Good morning, everyone. Thank you for letting me be here. I’m so excited. My name is Ricki Fairley and I’m the CEO of Touch, the Black Breast Cancer Alliance. I’m an almost 10 year survivor of triple negative breast cancer. I was given two years to live and I’ll be 10 years in October. I focus on helping black women with breast cancer because our mortality numbers are crazy and we’re trying to change the science on how we address the needs of black breast cancer patients. I host a web series called The Doctor Is In on BlackDoctor.org’s Facebook page every Wednesday. You could watch tonight at 6 eastern time. We talk about anything and everything breast cancer. I’m blessed to be here. I know that God left me here for the purpose of being an advocate and I try to fight like a girl every day to improve the conditions of black breast cancer.

LAURA CHAVAREE: Thank you, Ricki. Stacey?

STACEY TINIANOV: Hi everybody. I’m Stacey Tinianov, and I live in the San Francisco Bay Area. I’m kind of the opposite of what Anne Marie shared with you. I was actually in a caregiver role in 2013. My mom had just been diagnosed with breast cancer. My kids were 10 and 12 and I was flying back and forth to Texas where she lives to help her through treatment. With my first mammogram—my baseline mammogram—I was diagnosed with invasive ductal carcinoma which set me off on a journey from self-advocacy to patient advocacy to research advocacy to policy advocacy. And I am enjoying not only this group, but working with researchers, working with policymakers, and working with institutions to really change the way that people are treated with cancer. I realized fairly early on that while I will never be someone who says I was lucky to get breast cancer, I do realize that I was fortunate in many respects. Breast cancer has a lot of treatment options so I started to lean into some of the other cancer communities. One of the things that I learned just a couple of years ago is that while as advocates we are adamant and persistent on breaking down silos and institutions in research and in the clinical environment, we weren’t doing such a great job of sharing leading practices within our separate advocacy groups. So I co-founded a group called Advocates for Collaborative Education (ACE) and our mission is to unite all of the cancer advocacy groups so that we can learn with and from each other. Excited to be here.

LAURA CHAVAREE: Thank you, Stacey, and thank you to all of our other panelists. I’d love to start with our first question and hand that to Lew, which is how would you describe cancer-related distress? And how is it different from day-to-day stress or normal stress experienced prior to cancer?

LEW CHRISTIE: Sure, I think that’s a really big difference. I find that the difference is that cancer-related stress is with you almost every single day, whereas stress or stressors may come and go over time if it’s not cancer related. For example, you can get stressed because you were pulled over for a traffic violation, or you had to deal with your neighbor over his dog digging the hole in your yard, or you forgot your wife’s birthday, which is probably the worst one of all. On the other hand with cancer-related stress, I am always thinking of what can happen to me next. It can be 24/7. Being at 9/11 caused my immune system to be open to more than just leukemia (AML). Many other survivors had more than one type of cancer. My main concern is something like cancer will come back or I will develop a new type of cancer. Since I have been dealing with graft versus host disease (GvHD), I’ve had many different symptoms. I always wonder how bad they will become and what else will manifest itself? Every doctor appointment that I take is stressful to me. What will they find next? For example, I have five doctor appointments at the end of this month with a cardiologist, the dentist, an oral pathologist, an oncologist, and urologist—all those different doctors have a role in my GvHD. So every doctor appointment is stressful to me. Now, what is a compromised immune system? Many issues arrived from COVID, but with cancer related to GvHD, I can never know what’s happening. For example, I don’t know what I can eat, can I avoid crowds, taking my medications appropriately, etc. Cancer-related stress is really quite prevalent. In fact, nearly half of all cancer patients experience psychosocial stress, anxiety or depression. What I’ve gone through may be considered doom and gloom to some patients. However, there are always ways to alleviate stress and I truly believe help is on the way, especially working with Blue Note.

LAURA CHAVAREE: Thank you, Lew. I think that fear of cancer returning is something that is common and ever-present for folks even who have no evidence of disease and I appreciate you pointing that out. Anne Marie, do you want to share some of your experiences?

ANNE MARIE MERCURIO: Sure. So, you know, normal everyday stress is something that happens to pretty much all of us. We misplace our keys, we open the refrigerator in the morning to make a nice cup of coffee and realize we have no milk. You know, something disrupts your day, but the thing is every single one of those things is within our control to go fix it. When you’re diagnosed with cancer, it’s my body betrayed me. I can’t solve the problem. I have to rely on others to help me through this as far as the physical management of the disease. And then the top of your head tends to feel like it’s blowing right off. And speaking personally, my thoughts run away with me and once I hit that place, it’s sometimes hard to pull myself out of that. And then there are the physical demands of treatment that are a constant reminder. So the stress of cancer is constantly kind of on your shoulders, almost feeling like it’s pushing you into the ground. Whereas the normal stressors in life that we all deal with—although I would say that over the last year and a half to two years, we’ve all been like stress on steroids because of the lockdowns and everything else that’s going on so this is not a typical comparison. But these other things, it’s like, alright, so big deal. So you have no milk, you know what, you’ll find a way to drink your coffee black this morning. But with cancer, it’s like it’s not going away. And yes, the fear of recurrence—I’m glad that Lew touched on that because that is terrifying for most of us. You know, in particular in my case, it was in my face. You know, my mom had early stage disease and then she metastasized. So I would be lying to every single person that’s within the sound of my voice if I didn’t say that’s not somewhere always in the back of my mind.

LAURA CHAVAREE: Thanks, Anne Marie. I know, Lew mentioned that it is a very common experience to have significant stress that can sometimes move into anxiety and depression even. And what I’d also love to hear about from you is whether your cancer team identified this as a struggle and something that you could be helped with. But maybe before we get into that, Ricki, I think you have some unique perspectives as well on your cancer stress experience that I’d love for you to share too.

RICKI FAIRLEY: Sure. So you know, I was a superwoman badass, right? Taking care of everybody, as we all are, you guys know the drill. I was the breadwinner for my family. I was the rainmaker for my ad agency that I work with, and I just took care of everybody. I was the principal of the Children’s Church at my church with 350 kids. So I was doing everything, taking care of everybody. And all of a sudden you get this diagnosis, and this smacks you in the face and says, “Oh my God, you have cancer.” And I said, well, I really don’t have time for this. I was also one of these people that didn’t believe in stress. I was like a crazy person going 24/7. So when I first got diagnosed, I met with my nurse navigator and she said, “Ricki, you’re stressed out. You are totally stressed out. You need to figure out a way out.” And I don’t believe in stress. Stress is a cop out. Stress is for wimps. Who has time for stress? I feel like what do you mean, you’re stressed out? What are you gonna do, be the kid not going to work? Shut up already, snap out of it! And so no, you need to figure out why you are stressed out. I said, “Well, how do I know I’m stressed?” And she said, “Well, how many times a day do you think or say the word a-hole?” I won’t say the real word. And I said, oh my goodness, in my head that was what I called both my “wasband” of 30 years and my business partner of 10 years and I probably never said it out loud. But it was in my head all day and usually with an adjective that’s another bad word. So that’s what I call them in my head and so I realized I had to get rid of all of the cancers in my life, all of the stress in my life. And so I divorced my “wasband” of 30 years and I quit my business partner of 10 years. I had to get rid of everything. And I had to learn that my peace is non-negotiable. And so is yours. Don’t wait until you get cancer to know that your peace is non-negotiable. So I was kind of an octopus taking care of everybody and I had to sort of get rid of all of them. I knew that I could only take care of myself and my youngest daughter who was still in college at the time. But I also had never really been to a therapist and one of the recommendations from my navigator was you probably should see a therapist. And I said, “Okay, I mean, is that going to kill my cancer?” I don’t know but I did it. And she helped me understand that I was enabling these dependencies on me, that I was enabling my “wasband” to not have to work, I was enabling my business partner to not have to produce and so I had to learn how to say “no”. I always used to say “no” was never the answer; it’s always “how”. But I had to learn how to put myself first, to put the mask on my face first, and take care of myself as a way to get all the stress out of my life, all the cancers out of my life. One of the things I come across and one of our other advocacy partners in our journey with Blue Note is our friend Z. She works as an advocate and nurse navigator in Oakland, kind of in the ‘hood, in the trenches. And one of the things that she finds is when a cancer patient comes to her, when a breast cancer patient comes to her, they’ll often be homeless, not have childcare for their kids, not have a job. So before she can even get to solving for their cancer, she’s got to work on their creature comforts, their basic needs in life, to get rid of their stress before she can even help them with their cancer and we see that every day in our community. So you got to get all the cancers out of your life. Your peace is non-negotiable.

LAURA CHAVAREE: Yeah, thank you, Ricki. And thanks for recognizing Z as well. She’s been a phenomenal member of our patient advisory board and we’re so grateful for her wisdom as well. And I wondered, Stacey, if you could comment on how you came to realize that you could benefit from some help in this area?

STACEY TINIANOV: Sure. Absolutely. I think even before I get to that I’ve just heard my fellow panelists talk about the stress that’s inherent with cancer diagnosis and treatment. And I love Ricki’s “get all the cancers out of your life.” One thing I do want to acknowledge for people who may have been treated successfully for cancer, who are fortunate as I am to be right now in a position with no evidence of disease, is that it can be really stressful. Once you face your mortality, once you think about a shorter lifespan, you then have an urgency to make the most of your time on the planet, which means that some days you’re actually more stressed because you’re sitting on your couch in your pajamas having tea and reading a book and think, “Wait, I need to be changing the world.” So I just want to acknowledge that the stress is something that can last and is normal even after you’re in a position of good clinical health.

As far as recognizing the signs and symptoms, I was all about support. I was all about support groups. I’m all about people. I was diagnosed and three days later, I walked into a support group which would have been great except everybody was 20–30 years older than I was. They were talking about their great-grandkids and they were talking about the challenges of being widowers in many cases, while I was worried about how my 10-year-old and 12-year-old were going to get through this. So I have to say that my real impetus for finding support was not only for myself, but was finding it for my family. And I think that it can be a common issue, depending on your age and your stage of life when you’re diagnosed. But sometimes it’s really challenging again, like Ricki said, to say, “Wait, I’m not Superwoman. I’m not Superman.” And I just need some focus on me so that I can figure out how to keep all those balls going in the air. And there is a question in the Q&A about how to prioritize that really relates to it. I physically sit down with a piece of paper and a pencil and draw circles. And what are the circles that are most critical for me? It is my family. It is always my nuclear family. But then there are work obligations, there are friends, there are volunteer things. And so you build it out and you realize that stretching your arms around all of these people every day of your life is tiring, your arms get tired and your brain gets tired. So again, I’ll answer it in the chat as well. But I think it’s work. You have to figure out what balls can’t drop.

LAURA CHAVAREE: Thank you, Stacey. And thanks to Peter for that question in the Q&A. It’s a good one for sure. And Stacey, you mentioned, that there isn’t a one-size-fits-all that all support groups aren’t going to meet the unique needs of each person going through cancer. Justin, I think you have a perspective on this as well, being a young adult when you were diagnosed and not having children, etc. Can you share a bit about your experience?

JUSTIN BIRCKBICHLER: Yeah, so like I said, I was 25 when I was diagnosed and I pretty much went from going in for treatment every single day. Then I had a couple of weeks to let my immune system come back. So you know, I quarantined myself before that was the cool thing to do in 2020. So I was a little ahead of the curve there. Then they told me I was in remission and everything was great. And then all of a sudden I was just kind of expected to get back to normal. And everybody on the panel can attest here that once you go through cancer, there is no getting back to normal. There’s a new normal, which I now realize that everybody in the post-COVID time has taken that term. So we’ve got to come up with something else now for us. But it was hard, because yes, I was excited that I was done with cancer and my prognosis going forward looked really good. But there was like, I believe it was Anne Marie who said it, like my body just tried to kill me and that’s something that’s really hard to come to terms with. And I didn’t even attempt to come to terms with it for quite some time. I tried to just kind of bury it down and even though consciously I was trying to bury it, unconsciously it wasn’t going well. And so it was about a year after diagnosis that I started recognizing that I just was feeling stressed and down throughout the whole time. And I kind of just chalked it up to beginning-of-the-year stress—I was a teacher at the time—because that’s a very stressful time for all teachers and then I realized we were in the middle of November and that’s not beginning-of-the-year stress anymore. But again, I still didn’t really want to do too much about it. I started admitting to myself that something was wrong, but it was definitely something that people don’t necessarily understand because you’re done with the after treatment. I think that’s where the emotional treatment or the emotional healing really starts.

LAURA CHAVAREE: Was there a time when for anyone others recognized that you were struggling emotionally or that you might want to get some support in that area?

ANNE MARIE MERCURIO: When we talking about “others”, are we talking about family or are we talking about medical professionals?

LAURA CHAVAREE: All of the above.

ANNE MARIE MERCURIO: Alright, so I can say that in ‘06, although I was treated at a major cancer center, no one was asking me how I was doing. They were more concerned with treating the physical aspects of the disease and I was in a really lousy place with the whole thing. There were phone calls constantly because I have a big family and a big extended family and I kept retelling the story to them. I had to learn how to set boundaries for myself which is a very hard thing for me to do. I don’t like saying “no”. I don’t even like saying, “I don’t have the bandwidth for this right now. Can we pick this up tomorrow?” I feel like I’m offending somebody. And I think learning to take ownership of that and to be able to still kindly and in a loving way, say, “I’ve had enough. I can’t deal with this right now.” Of course I’m saying that now to everyone with a bit of a, you know, New York edge, but I wouldn’t do that because I was always so concerned about the way others were feeling, which is completely wrong. It should be that we’re being supported by those around us and you don’t expect people to be mind readers but, you know, I remember having a conversation on a previous panel and the most poignant statement was made by one of the clinicians who said, “Just say, ‘I can’t do this. I need help.’” And I think owning that and being able to utter those words is probably the single best thing that anyone that’s dealing with this can do for themselves. And whoever you choose to bring that to if they can’t help you, keep pushing until you find someone that can. I think the key is to take a self-inventory, see what’s going on, and then reach out and find where you can get the best support.

LAURA CHAVAREE: Thank you. You actually just answered one of the questions in our Q&A which had been asked by a clinician who commented that her patients often say that their families’ worry increases their own distress. And how can one manage that? So I think your answer was beautiful in terms of saying I need help and I can’t manage some of these things anymore. I’m going to quote you also Anne Marie, on the circle theory, where if you’re at the center, you can push your stress out, but the next circle is your innermost, your family and support system. They can only provide support in. They can’t push their stress or burdens back at you. And then when they have stress, they can push it to the next circle, going outward, but not back in. And the further out in your circles you get, that’s where maybe the people are best served in supporting you by doing things that don’t involve seeing you necessarily, so the chores, dropping off food. But as Ricki has pointed out, as well, there’s some people who you do need to push to the outer circles for your own health and well-being.

JUSTIN BIRCKBICHLER: Laura, I wanted to chime in on your original question about other people recognizing my stress. In my case, it was my oncologist who really stepped up to the plate, although I’m sure my loved ones may have noticed it. But when I went in for my follow-up appointment about a year after finishing treatment, before we even got into the test results, he recognized I was obviously stressed about the results and everything just because everybody goes through scans anxiety, especially in the first couple of years if not every time. But he said, “How are you doing today, Justin?” And I said, “I’m fine,” because that’s just traditionally what everybody says. You know, you don’t want to be a burden to people or feel like you’re burdening people or anything like that. So my default is, “I’m fine.” And so he paused and he was like, “Justin, how are you really doing?” And just that extra question changed everything for me, because he asked that question. I said, “I’m not doing well, physically I’m doing fine, but emotionally, I’m falling apart.” And so he was like, “Oh, your scans are fine.” And then we spent the rest of that hour pretty much talking about different resources that he could help provide so that I could do better. Then I started on a course of antidepressants to help with that. I started therapy. I started a whole bunch of different things to really work my way through that. If everybody who’s listening doesn’t get anything out of this other than just this, if you ask somebody how they’re doing, don’t just necessarily take, “I’m fine,” as the answer. Take the extra step to say, “Well, how are you really doing and really make space for them to be there and listen. The best thing is just that this conversation is how you can really get the next steps going.

LAURA CHAVAREE: Thanks, Justin. And Ricki, I know you wanted to say something.

RICKI FAIRLEY: And on that it’s really, really hard for a black woman, and I’m generalizing for black women, to ask for help. We are all helicopter moms, super women who take care of everybody. I will give you my last piece of chicken, I will walk and give you the car, I will do anything for the people that I love. And that’s how we are really super moms. And so it’s really, really hard to ask for help. And so when I talk to a new “breastie”, the first thing I ask is who’s your support system, call your mom, call your girlfriend, call your sister, call people. I was very blessed because my friends knew that I wouldn’t ask for help and so they showed up, my friends from my whole life, from childhood to college to working just showed up. For a year somebody was in my house with me holding my head over the toilet, driving me to chemo, whatever, they never asked, they just showed up. And so if you have a situation where you see someone don’t ask, just show up. And so I actually started a club of my friends, and they didn’t even know each other from different parts of my life. And it’s called SMAD, Sisters Making A Difference. And now 10 years later, we still meet every other Sunday night and have a prayer call. And you know, one of them has had a kidney transplant, one lost her husband. So that network of friends is so important. And it may not be your family members, it may be your friends, it may be, you know, anybody. So I just always say just show up, don’t even ask them what they need, because they don’t know, just bring the fried chicken, just take their kid to daycare, just be there for them. Don’t even ask them, just be there. And I always say, find your circle of friends, find your posse and let me talk to your posse because I’ll tell them what to do for you. They know, but you don’t really know what you need. You need everything. You know, you need everything, you need help with everything. So if they can take one little thing off your plate, it’s a good thing. So just show up for people. You know, I also found that I had triple negative breast cancer so going to a cancer support group was useless to me. Or complaining about tamoxifen making me fat or this or that. And I rarely saw another black woman. And so I found that I had to find women who had what I had to really relate to me. And so it’s important to do that. And we can help you with that with breast cancer. So just call me.

LAURA CHAVAREE: Lew, I see your hand up. And thank you, Ricki. Those comments are so important. Lew?

LEW CHRISTIE: It’s very interesting, I knew I was stressed, but no one ever offered help. Or asked me how I was feeling, even from the clinicians that I met with and even when I was first diagnosed. I think clinicians need to recognize stress immediately as the first diagnosis and not say, “Hey, pack up your bags, you have a year to live.” I think they need to offer suggestions on what you can do to alleviate the stress and possibly look for solutions to your cancer. How can you beat it? Don’t tell me to take a vacation, you have a year and you’ll be gone. I mean, it’s something they need to recognize immediately. So again, I just think I knew I was stressed but I didn’t know where to get help and no one ever offered it to me. Just a point.

LAURA CHAVAREE: And I appreciate that point. I think the experience of each of the patients that I talked to is vastly different. You know, there’s no single patient perspective; it’s as diverse as anything in terms of whether someone is screened, or if they are screened, if they ever are offered tangible resources. So I wonder, Stacey, if you could talk a bit about that. As well in terms of what resources there are or how someone—your care partner or a patient in your life— can get the support that they need, knowing that the diversity in options is significant.

STACEY TINIANOV: And so there’s the diversity in options of support, and there’s the diversity of people. Right? And as Ricki mentioned, she walked into a support group and did not feel that connection. And I’ve mentioned to this group before that I have five support groups that I belong to and they all give me different things or sometimes I go in and give them different things. So you don’t just have to pick one, but I think it’s important to know that we as patients hear a lot about, oh, here’s this survivorship program, or here’s this socio-emotional support program for people going through cancer. Most of these things are at large academic medical centers that have the money, that have the resources to put these things in place. 80% of the individuals diagnosed in the U.S. are treated at community health centers or community health hospitals; we don’t always have the same access to the same thing. You need to find and understand what might work for you so if it’s not a physical support group, maybe it is something that’s online, and I think Lew or Justin mentioned AnCan which does virtual support groups. If you have a common cancer, you may have more options. But you can go to the advocacy groups that are available for that cancer. If you have a rare cancer, call us and we will help connect you. There are a lot of resources out there: NAMI, the National Alliance on Mental Illness—and I hate that name because people then grab all the stigma associated with it—but you can call them and they can connect you, although it might not be a cancer-specific resource.

And so you have to do the hard work to figure out do you need to talk to somebody who’s been through what you’ve been through before? Do you have a special circumstance and maybe it doesn’t need to be cancer-related? Maybe you’re worried about your spouse, or you’re in a situation where you need support related to that. There’s so many places to look. And unfortunately, there’s not a website you can go to, there’s not a phone number you can call and get all of those resources. But I think fundamentally, it’s important to know who’s in your circle. Right? And I think Justin mentioned, and I think it was great advice to clinical providers, to ask the question, “How are you really feeling?” And so if you have a strong connection with your medical oncologist, feel connected, feel like you can say, “Hey, I need help.” If you don’t, and you have a strong connection to a primary care provider, feel like you can say that as well. If you belong to a faith-based community, reach out there. I think the one thing that I want people to take away is that it’s not figuring out whether you need support, or figuring out how to get support, you’re going to need it. You’re going to need it. It’s going to look different from what I needed. It’s going to look different from what Ricki needed, but you’re going to need it. But you deserve it. You so deserve to be supported. And that’s whether you have cancer, that’s whether you don’t have cancer. And so I really would love for this group, for the people who are on this call, to start to think about flipping the paradigm that like, “Oh, I have cancer and so I might need social emotional support.” No, you’re going to need it; all of us need social emotional support and you deserve it.

JUSTIN BIRCKBICHLER: There’s a question in the chat and I think we can all probably answer this. It was something about how easy or difficult it was to get mental health support. In my scenario, it was both easy and difficult at the same time. To find a therapist that was, in my case, easy because I went through my employee assistance program at work, and I was able to find one through them and that was lovely. I was able to connect with a great therapist. Well, I got a little ahead of myself. The only thing with a therapist is if it doesn’t work the first time, feel free to shop around. I met with one therapist and we just didn’t click very well—nothing against her and nothing against me. It just didn’t work, and rather than just kind of giving up on therapy, I took a couple months off from it. Then I found a different therapist and we clicked from the start. It probably helped that he looks and reminds me a lot about my grandpa, but we still see each other. I was seeing him weekly and then monthly. Even though overall things are doing better in my life, I still make a point to go see him. The thing that I found difficult was getting insurance coverage for some things. I had no problem going through hundreds of thousands of dollars of chemo medical bills, but the first time my insurance was asked to approve antidepressants or approved therapy, they fought me tooth and nail on it. So that’s where the difficulty was. Getting the support from my doctor in the form of medication was easy. Finding a therapist was easy. But then getting all that approved, that was the difficult part. So I would be interested to hear from the other panelists on their kind of experience. And I know, Ricki, you had wanted to speak.

RICKI FAIRLEY: I totally agree with you on the money thing and that therapy is definitely an issue, but I was just gonna bring up that therapy in the black community, there’s such a stigma about it, and just speaking for black people, you don’t talk about mental health. So to get them over the hurdle that it’s okay to feel bad and do something about it is a major conversation. And when you start talking about the employee assistance program, a black person is not going to do that because they’re afraid they’re gonna lose their job. So it’s really a huge issue for the black community and just being able to talk about mental health and saying being stressed is okay—I have a lot of those conversations. Also to the question earlier about what can the medical community do, what can doctors do, and what can health professionals do? Act like we’re your kid, act like we’re your daughter, your mother, your auntie, your grandma. When you ask me what I need, think about what your mother would need, think about what your daughter would need, think about what your auntie would need. Think about how your person would react to what you’re saying and that level of kindness and consideration is what we need. So just a piece of advice with that.

ANNE MARIE MERCURIO: Can I go on a tangent for one second on something Justin just said? You made such an important point about the way health insurance providers deal with mental health and physical health and how you have to jump through hoops to get support for mental health. It’s as if your head is detached from your body. You need to go through a whole different part of the insurance to get prior authorization and it’s frequently not covered, or it’s covered at a greatly reduced rate. So I think that’s something that’s far beyond the realm of this panel. But I think we just need to give a nod to the struggle and we need to find out collectively as advocates and work with others to try to close this gap to make sure that everyone can get the care they need. I spent many years in therapy because when I was diagnosed, I was living with a very bad marriage situation. It ultimately ended in divorce but it took me 10 years to get the courage to do that, and the handholding of a therapist. So I had no support from the person that I was looking for support from through my diagnosis, through my treatments, through being couch-bound from being beat up by chemo, if not for a therapist that was really able to give me practical help. But again, I was the stubborn one. It took me 10 years to recognize and to be able to say, no, I need these boundaries to be able to manage my stress, to be able to deal with these doctor’s appointments, to be able to make sure I’m keeping myself in my best possible health, treatment through post-treatment. It’s not an easy thing. We need to do something about the way mental health is handled in this country, specifically for cancer patients, but really more broadly across the board.

LEW CHRISTIE: You know, I find this very interesting. My diagnosis was the worst diagnosis anybody could get, yet I never knew I needed help. I never even thought about it. Every day people would say, hey, you’re doing fine. Even when I was at the cancer center being treated, hey, you’re doing well. I never ever thought that I would need any kind of therapy at all. And to be honest with you, I didn’t realize it until I actually started working with Blue Note and you start looking at yourself introspectively and saying, hey, I really missed out on doing this. So again, I think it’s important to recognize when you actually need to help. And all through my cancer journey for the last seven years, I never thought of it, I never realized it.

LAURA CHAVAREE: Thank you, Lew. So we have a couple questions from clinicians in our audience today. And they’re probably coming at this from a place where they know that it’s in the requirements for a number of clinical guidelines that people with cancer be screened for stress and anxiety, that those who are a year out from treatment should be given a survivorship care plan that also includes information on how to manage your psychosocial well-being and resources in that area. Does anyone recall being screened or being offered specific resources? It doesn’t sound like it. And then was anyone offered a survivorship care plan at some point that stands out in their mind as being provided?

ANNE MARIE MERCURIO: No, the short answer is no.

RICKI FAIRLEY: No.

LEW CHRISTIE: No.

JUSTIN BIRCKBICHLER: No.

STACEY TINIANOV: No, I was not offered one per se, but my facility made a big damn deal about how—a couple years after I was out of treatment—that they were going to offer them to everybody. And so I raised my hand and said, I need one of those. And they’re like, great. And three days later, to their credit, three days later, I get a call. And the person, who is very, very nice, says, I just want to know how you’re recovering. And I’m like, from what? And she’s like, well from your mastectomy. And I’m like, well, seeing as it’s been three years since the second one, I’m doing pretty well. She’s like, oh, hold on a second. She digs through her things. She’s like, I’m so sorry. I had the wrong file. How are you doing with your smoking cessation? And I’m like, I’m doing great because I’ve never smoked a cigarette a day in my life. So we’ve been through all this stuff. And yes, it got elevated to Member Services the whole bit, but they tried to push me through an intake process that really wasn’t ready for me. I did finally get a survivorship plan. And my plan was to eat the rainbow. My plan was to have regular mammograms. I don’t have any breasts. My plan was to see my oncologist on a regular basis. No timeline, no nothing, no conversation or no information about our cardiotoxicity and finding an onco-cardiologist, like none of that. So survivorship plans for any of you who think you want one, it’s not about the plan because the plans honestly suck. It’s about the conversation. And so if you can start to work with your clinician, or work with your facility, or work with people who provide care to you, including your primary care provider, if you’re going back to that, it needs to be a conversation. This is part of your medical history. Cancer does not define you, but it is part of your medical history and it is something that people need to be aware of. It potentially changes your screening for the future. And like this whole panel is about it’s something that lives in your head and you need and you deserve to have the resources to kind of work through that on a regular basis.

LAURA CHAVAREE: Thanks, Stacey. And we are coming up on time. I’m going to ask a few more questions in the chat, hopefully. And then hear some comments from our CEO, Geoff Eich. We have a question in the Q&A. Have you ever had a recurrence and thought to yourself that the stress you allowed into your life is what caused the recurrence?

LEW CHRISTIE: Well, I had a recurrence. My first transplant failed after six months and I was told I would need another transplant and that it was difficult to find a donor. And eventually I wound up with my younger daughter giving me a transplant six months later. So I did have a recurrence and it was extremely stressful. Knowing that she had to go through that as well to give me her stem cells.

ANNE MARIE MERCURIO: Can I answer from the caregiver side?

LAURA CHAVAREE: Yes, Anne Marie, please.

ANNE MARIE MERCURIO: While I have no medical proof of any of this, when my mom was diagnosed with this second primary, which was after my treatment was done, it was six years after that when she developed metastatic disease. During that six year period, her stress level was through the roof. She was diagnosed three weeks after my dad passed away with the other primary. So she went through the grieving process of losing the love of her life who they were 15 years old when they met and he died at 71. There were dynamics going on in the family. I’m one of five kids who were all married. There were dynamics going on within the family that were creating really bad feelings for her. And I know what stress can physically do to your body. I wonder what it does to dormant cells that may be lying there looking for the perfect situation to reactivate. In her case, the cancer hit a rib. And then ultimately, I do think that stress management is important for cancer patients. I remember years ago speaking to somebody at The James and they were doing studies on non-cancer patients that were living through very stressful situations and comparing them to a control group of people that were previously diagnosed with cancer. I don’t know that this was ever published; it was in a small conversation. And it was many years ago, but I think that the effects of stress on the body are well documented in many areas, not just cancer. But I think that as cancer patients, it behooves all of us to do what we can to keep it down. Because I have found myself over the past year, since my mom passed away, yelling at people, hey, stress caused her disease to metastasize even though, scientifically, I have no proof of that. But now I’m using it as the get-out-of-my-face card. Because I’m not going to have what happened to mom happen to me.

JUSTIN BIRCKBICHLER: There’s one question in the chat that we answered typing it out, but I think it’s important to answer it verbally as well. It said, “Are there key times when the health care team should be screening for distress?” And I always say there’s three key points: before they start treatment, during treatment, and after treatment. Or as Stacey put it a little more succinctly, every single visit. I think that is so important. And every single visit, it doesn’t have to be an hour long every time but just taking the time to check them for distress. You’re not going to be doing anything other than helping the individual.

LEW CHRISTIE: Can I make one more quick point? We’ve got stress within ourselves, but the stress also is equal with your caregiver. So let me tell you, my wife was so stressed with me getting leukemia and with the diagnosis. I think we need to take into account caregivers as well and recognize that they need the same help that we need.

RICKI FAIRLEY: It’s a family affair, all the way a family affair.

ANNE MARIE MERCURIO: It’s worse being the caregiver. I can attest to that. Having most recently worn that hat, I can say definitely worse because I was helpless. And I knew what was coming and there was no worse feeling in the world for me. I really was completely helpless. There was nothing that could be done. So you’re pivoting around with this impending sense of doom. Because, you know, in my mom’s case, you want to focus on making sure that the patient is getting their needs met, if you’re doing it right, but what we’re doing there is putting ourselves so far beyond the deserving of care. That’s counterproductive because you can’t be a good caregiver if you’re not taking care of yourself as well. So to the caregivers out there, I would say, ask for help, even if it means having somebody come and sit with the person that you’re taking care of so that you can just go out for a walk for an hour and clear your head.

LEW CHRISTIE: Amen.

LAURA CHAVAREE: Thanks, Anne Marie, and thank you to all our panelists. I am going to keep the meeting going beyond this. For those who may want to stay who are attendees in our audience, and thank you in advance to our panelists who are able to stay and respond to a few more questions. Before I do that though, Geoff, do you have a few thoughts?

GEOFF EICH: Sure, I would just want to say thank you to all of our panelists today and everyone who’s in the audience. If you wonder what Blue Note is about and why Blue Note exists and what our purpose is, it is to help and to lend our shoulders to everything that you’ve heard today. No one wants to hear from another CEO so perhaps I’ll just say it as a cancer caregiver: this is our mission to ease the burden of cancer to improve outcomes and to use technology to ensure that all Americans have access. Ricki pointed out a few points that just really stuck with me: the ability to overcome stigma, the ability to make sure our insurance plans treat from head to toe. These are part of the Blue Note mission and that’s part of our purpose every day. And so I just couldn’t be more grateful for our panelists and those of you who took time today to listen and understand more about cancer-related distress. And now you can say yeah, I get it. I know what Blue Note is doing and why Blue Note exists. That’s our purpose. Thank you.

LAURA CHAVAREE: Thank you. I did want to also put a plug out there for anyone who might be interested in helping us with our mission as a patient advisor, so feel free to email me at info@bluenotetx.com. We’d love to hear from you.

STACEY TINIANOV: And if I might, Laura, I think in the advocacy community, in the patient community, there are a lot of requests. People want you to share your story because they want to ostensibly do the right thing. And I just want to say for any people who are thinking, hey, yeah, this is kind of interesting, but I don’t want to be a token patient. I don’t want to tell people things and then just have them disregard it. With Laura, there was no hyperbole. We have been involved from the beginning. And you know, Geoff is here on camera—the number of times that we’ve said, no, wait, wrong, wrong direction is equal to the number of times they’ve said, okay, let’s redo this. Let’s create this together. And so if you’ve been in this community for a long time, you know that’s rare. But I’m excited to be part of the team because it feels like a team that truly gets it, wants to continue to get it, and it’s not just talking the talk, but it’s walking the walk so I’m super grateful for them.

LAURA CHAVAREE: Oh, thank you, Stacey, as are we for you. We have some great comments from our own clinical advisor Diane Shumay who is the head of the psycho-oncology function at UCSF. And she just acknowledges that nurses have a lot of variety in terms of things that they’re doing and trying to help with and they are often overworked and under-resourced as well. She says, taking a breath and witnessing the patient with kindness is so powerful, and also asking, what do I need to know about you, to give you the best care today? I think that’s really powerful. And I will also just send my appreciation to the social workers out there working in cancer centers everywhere. Full disclosure, I’m an LCSW originally, they are also unfortunately overworked and under-resourced. But if your cancer center has one or more, make it a point to learn their name and get to know them. They’ll be there when you need them if you can get on their radar. They usually have great ideas for a diversity of resources, which is also something that I heard in this discussion today that not everyone’s going to be a support group person, not everyone’s going to feel comfortable putting themselves out there in that way. And then of course, there’s the downside of doing that and not getting what you need. So acknowledge that you know yourself and what feels comfortable. There are some less intimidating ways to try and find your people and not everyone’s people are the same. Some people really get a lot out of the Twitter chats. And the hashtags that are out there—#bcsm, #crc, #ccsm—so specific to the type of cancer you have in that community. There are not a large number of psycho-oncologists and therapists who are also trained in cancer-specific, proven interventions. So that’s a limiting factor in seeking out a therapist, but they do exist. And we talked about the challenges of insurance reimbursement, as well as finding a therapist who comes from the same community you do, and the limited resources for people of color in the therapy community as well. So there’s a number of things that need to be improved and changed for sure. But to end on a high note, I do want to just encourage everyone to acknowledge that this is an important element to one’s cancer treatment. And that it is something that most cancer patients experience and that you deserve to have this need met. Okay, so with that, I thank our panelists so much. I thank the broader patient advisory board panel that we have and look forward to meeting some new advisors as a result of this talk.