How to Advocate for Yourself as You Battle Cancer

At 41, Bill Potts received a diagnosis of thyroid cancer. He listened to the recommendations from his primary care physician and didn’t seek out a second opinion. It was only six months later, during a follow up visit when his doctors wanted to repeat his treatment with radioactive iodine that he began to ask questions and started to advocate for himself. He now says he would likely be dead had he not sought out a second opinion at that time. He’s since learned a lot about advocating for himself with cancer as he’s been diagnosed six times with cancer. He’s taken what he’s learned from his experiences and written Up for the Fight, a guide for newly diagnosed cancer patients, family members, and caregivers. It provides not only critical advice on dealing with the mental aspects of the disease, but also lots of practical advice about navigating the healthcare system, insurance companies, and treatments that could only come from lived experience. We spoke to Potts about why it’s essential for patients to learn to advocate for themselves, how to navigate the mental and emotional aspects of the disease, and why it’s important to stay motivated and celebrate small achievements along the way.

Daniel Levine: Bill, thanks for joining us.

Bill Potts: Danny, thanks for having me on your show. It’s awesome.

Daniel Levine: We’re going to talk about your new book “Up for the Fight,” your experience with cancer, and the importance of people learning to advocate for themselves. You were first diagnosed with thyroid cancer in 2002, at the age of 41. Since then, you’ve been diagnosed six times with cancer, including lymphoma four times, and prostate cancer. Once you’ve undergone surgery five times and had 14 rounds of chemotherapy, the introduction to your book starts with a fairly dark moment as you’re waking up from surgery and crying. What happened?

Bill Potts: Yeah. Dark is probably an understatement. I’ll set up the time. It was September of 2020 and I’d been in remission from lymphoma number three for less than a year. My lymphoma had come back in July of 2020. I’ve been diagnosed with prostate cancer all during a global pandemic. And so, I was having surgery at Mayo in Jacksonville to remove what was a very painful tumor, which was lymphoma number four from below my right hip. And so, this is a time when you’re really by yourself, you can’t have family with you, things like that because the Covid protocol. And I woke up in the recovery room after the surgery. It was a full emotional breakdown. And Jen, the nurse came over and she said, “Bill, what’s wrong?” And I told her, “I’m not sure I’m up for the fight. This is a journey I’ve been on a lot of times. I know what’s coming. I was wrong in this case. It was harder than I thought, but maybe this is time to throw in the towel and give up the fight.” So, she smartly called the pastor of Mayo, who I’d met before the surgery, and she came in and sat with me and we had an hour conversation about why she did what she did and why I needed to fight. At the end of that, our conversation, I decided that I was really up for the fight. I would fight for my family, I would fight for my friends, I would fight for my job, and I would fight to make God proud. And so, that was a great conversation. At the end of that, she looks at me and says, “Bill, you ought to turn your pain into purpose and write a book to help others.” And I was lucky enough to be able to find a publisher that supported this goal and got it done.

Daniel Levine: Well, one of the things that I found particularly interesting in the book early on, one of your first pieces of advice is that when people are first diagnosed with cancer, they should limit who they let know about it. You know, we live in this age of social media and a culture of oversharing. Why do you advise that?

Bill Potts: It’s great advice and advice people should follow, because first of all, the initial diagnosis isn’t always right. So if you do your homework and you get a second opinion, it’s not uncommon for the initial cancer diagnosis to be wrong. So, that’s the first thing. But really, from an emotional point of view, you want to keep it private because the moment you push it out on social media as a patient, you need to start handling other people’s emotions and all the things that they’re going to say to you. And this is a time when you’re initially diagnosed where you really need to be private and get your head and heart around what you’re about to go through and the feelings that you’re having. And it becomes infinitely more difficult the more people that are reaching out to you to talk about it. There is a case that says you do want to share it with family and friends, but I even wait on that until I have the game plan, because it takes a few weeks usually to come up with a game plan and what type of treatment, how often is it going to be, what kind of side effects am I going to have? And so, for that reason I hold back on even communicating to most people until I have a game plan with the stipulation that I don’t want you to post anything about it on social media. The other issue related to social media is work. Up until my latest bout with lymphoma, I kept my cancer largely secret from work. Yes, my boss needed to know, my boss’s boss needed to know, but generally people didn’t need to know about my cancer because I didn’t want it to affect my work. In particular, I was in sales and I didn’t want it to impact my relationship with clients because I wanted the focus of my conversations to be on them in sales—that’s important, not on me.

Daniel Levine: One of the things you talk about is the need for a second opinion. I’m going to start that over, I’m sorry. One of the things you talk about is the need for a second opinion. In fact, not getting one was initially something you described as one of your biggest mistakes, and you say it’s one of the main reasons why you wrote this book. What happened?

Bill Potts: Yeah, it was my first cancer. With thyroid cancer, I go to my primary care physician and notice this nodule on my thyroid, wind up having surgery locally with a doctor he recommended, pulled it out. It was thyroid cancer. And then I went to the local for-profit oncologist that the doctor had recommended without getting a second opinion before I started the treatment, which was radiation ablation treatment, which is a pill, iodine 137, which is the same radioactive material that was released in Chernobyl. So this is not good stuff to be consuming. I was literally hot like a Geiger counter and couldn’t leave the hospital till I passed federal regulations on radiation that was coming from my body. So, about nine months later, the same for-profit oncology group recommended I go through radiation ablation treatment again. And at that point, I raised the red flag because I’m like, that’s impossible. I can’t possibly have thyroid cancer because it’s all been radiated out. And at that point, I woke up to the need for a second opinion. So, I went to MD Anderson Cancer Center there in Houston, and they gave me the second opinion, which is there’s no need to have radiation ablation treatment. Your thyroid cancer is not back. And dude, you took a lot of radiation when you took that pill, and I’m not even sure you needed to get your thyroid taken out completely. That decision not to get a second opinion early on, and this is not uncommon because you’re in a rush on the cancer journey, still may cost me my life because I’ve had lymphoma four times since I had that radiation treatment. And it’s not uncommon for people to get second cancers, and I wouldn’t be surprised if the lymphoma is a result of that radiation I got from my initial thyroid cancer.

Daniel Levine: This relates to another issue you talk about in the book, which is that most people are deferential to physicians. They take the view that they’re the experts. And you talk about the need for patients to own their own journey. What do you mean by that?

Bill Potts: Yeah, owning your own journey means that you have to understand that it’s your life and only your life. So, you have to own every step of the cancer journey. It’s not just for cancer, it’s for any sort of illness, but that means that you have to pick your care team. You have to get on board with what the treatment’s going to be. You have to come prepared to ask questions, you have to take good notes, you have to communicate well with your care team. You have to get your head and hands around the emotional and mental side of it. So, you have to own that journey. When you look at healthcare, these doctors have a lot going on, and what I found is that they actually appreciate a patient that is on top of it and owns their journey. Case in point, MD Anderson 2008, stage three lymphoma: I sat with the team and I turned down the chemotherapy that they recommended because I didn’t want to lose my hair because I was in sales and I needed to keep traveling and making sales calls. And they took it as a positive and they took it as a challenge, and they were great about it. And it was then that I realized that owning your own journey was really the way to go. I started it with the thyroid cancer and I continued it with lymphoma, and it’s been beautiful and I am a hundred percent sure if I hadn’t owned my own cancer journey, and I’m currently owning it, then I wouldn’t be alive having this conversation.

Daniel Levine: One of the places that can be critical to advocate for yourself is in getting appointments faster and getting insurance companies to move faster. Time matters. There’s urgency that others may not always share. How should people deal with this?

Bill Potts: That’s a complicated one, Danny. The first four weeks after an initial cancer diagnosis are important. It clearly depends on the type of cancer that you have, how urgent that is, but it’s a balance of being a patient patient, but [also] being a persistent patient. And so, some of the tricks that I use are I try to build a relationship with my care team early on. For example, even though I got fired from my previous primary care physician because I didn’t see him enough, even though it was because I was going through cancer treatment, my new primary care physician I developed a relationship with. And I said, “Hey, just in case you know here’s my current situation. If I need you, it’s because I really need you. I need you to respond quickly.” And that’s worked out great. When I need my PCP because of that relationship, I’m in the next day. But I also use the portal to communicate with the doctors. That seems to be the secret sauce in getting responses is using the portal that’s provided by the healthcare team. And I’m also very nice but persistent when I call to get appointments. So, it’s a combination of all those things that makes it work. What I find that doesn’t work is trying to be combative. You really need to be a persistent patient, but nice.

Daniel Levine: There’s a lot of practical advice in this book, the types of things that I think only comes from someone who’s actually lived through this, things like picking your care team and what to bring to an infusion and why to avoid valet parking. What’s the most unexpected piece of advice you’d offer? What’s been the most counterintuitive aspect of your journey?

Bill Potts: It’s been how much my healthcare teams like and respond to me advocating for myself. It has enhanced and improved my journey dramatically. So, when I come in to them prepared and I come into them advocating for myself on all those things I talked about earlier, and I build a relationship with them, I am pleasantly surprised how those relationships have helped me in my journey, not just from an emotional and mental aspect, but also from a treatment aspect as well.

Daniel Levine: Sorry, I just had a cord issue here, but we’re okay. You described cancer patients as needing to be active and engaged in their care, preparing for medical appointments, doing extensive record keeping, staying current on literature. This is a disease and its treatments that can affect energy levels and your ability to think clearly. How do you balance that and to what extent should people get help from family members or friends, if possible?

Bill Potts: Well, you asked that question beautifully. Chemo brain is a pretty common side effect from cancer treatment. It really does impact your ability to think. Fatigue is super common with a lot of the cancer treatments. So, you really do need to have a support group with you, and each patient needs to have one or more than one, I call it a buddy that is somebody that understands your situation, that understands you, that can get up to speed pretty quickly on what your healthcare needs are, so they can be with you when you’re at these doctor’s appointments. Because a lot of times you’re sitting in front of the doctor and because of all those things that I mentioned, plus the stress of what you’re going through, you hear a lot of blah, blah, blah. You see their lips moving, but you’re not computing what they’re telling you. So, you need that advocate with you to be able to take those notes, communicate. I actually practice with my wife before we go into these appointments. We have written notes and I tell her, “I’m going to try to handle this conversation, but if I can’t, can you jump in and make sure I get all the questions asking? Can you please listen to the answers and take notes and take notes nine out of 10 times?” That’s the way it works. And I come out of there and then we regroup. And I have a really good understanding of where I sit.

Daniel Levine: At times you’ve received experimental therapies as part of a clinical trial. What advice would you offer people about learning about emerging treatments and participating in studies?

Bill Potts: Yes. So, this is a part of the question that you need to ask your healthcare team, and you need to do research on your own. It is a little bit of a clunky system in the U.S. of how to find clinical trials. You can go to cancer.gov and you can find them. You can go to, for example, Leukemia Lymphoma Society. You can call them, and they can help you with that, too. There’s a group called Leal Health, L E A L Health, that takes AI and consolidates all the information for all the clinical trials. They’re in the U.S. and can match you with what you need. But again, this is a hard one for a lot of people, but you’ve got to dig into the clinical trials that are available for your cancer because it could be what works for you. That’s what happened with me in 2008, and I was an early benefactor of immunotherapy before that word had even been spoken out loud in most cancer centers. So it’s something that’s worthy of doing for all cancer patients to at least ask about it.

Daniel Levine: you mentioned Leal Health. We do have an upcoming podcast with Leal on our sister podcast, the BioReport and suggest people watch for that. There are some people who try to go on with their lives as normally as possible when they do get a cancer diagnosis, they try not to alter their daily lives. They try to continue working as if nothing has changed. Do you think this is a good strategy?

Bill Potts: It can be a good strategy. I think it depends on the cancer patient, the cancer diagnosis, and the side effects. So, I’ve been on both sides of this in 2008, 2014, 2019 with my three lymphomas. I opted to try to continue living a normal life as a possible, trying to keep it a secret from my work the best I could and just continue to live life the best that I could. It was particularly important for me early on in my journey when my kids were little, and I was trying to spend time with them and get to their soccer games and baseball games and all those types of things and be the best parent I could. But I was lucky because the side effects allowed me to largely live a “normal life” even though I needed a lot more sleep than the average person. However, in 2020, 2021, and even 2022, my life is anything but normal because the chemotherapy just beat me up so much that I couldn’t live a normal life. Fatigue, you know, is an issue for sure going through chemo. The chemo brain was an issue. The fatigue was an issue. So many side effects that I was dealing with, I really couldn’t live a normal life. And what I learned finally after the fourth lymphoma is the value of rest. And for the first time in my cancer journey, I started resting when I needed to rest. And I am positive that has helped me in my cancer journey. It’s a little complicated for blood cancer patients because of the Covid 19 pandemic. It’s a cancer of the immune system, and it made it extremely challenging going through treatment and post-treatment. Still, I’m immunocompromised, so to live a normal life you have to take that into account as well. If you’re immunocompromised, you can’t live a normal life, and so you have to adapt to that.

Daniel Levine: You talk about learning from your mistakes and the importance of people with cancer learning to advocate for themselves. How did you learn to advocate for yourself and was there a mistake you had made that had led to that?

Bill Potts: Yeah, it was a mistake in 2002 and then again in 2003 when I was diagnosed with cancer wrongly the second time for the thyroid. I’m glad I learned that lesson because it’s helped me deal with all these other cancers I’ve had. If I had learned my lesson early on, I probably wouldn’t have the cancers that I have. It was the whack on the side of the head. That is really the one thing that I hope people can take from my story, is to own it, to advocate for it, to get the second opinions as a part of that, and it could save your life.

Daniel Levine: You also advise people to confront the reality that they may be facing death. What should people do in that regard?

Bill Potts: Hmm. Yeah, that’s a tough subject and it’s taken me a while to get my head and heart around that one. But you have to confront that possibility. You have to get your head around it before you get to that point. Hopefully you won’t, but you don’t want to be surprised by the potential for death. And this is a pretty common issue amongst people that have life-threatening illnesses. It’s a hard one to confront, but it means not just confronting it from, it could happen to me, let me start thinking about it. It also helps move the dial on things that need to get done as a part of the cancer journey, which is a living will, which is a DNR, if that’s what you want, which is where you want your stuff to go. All those kinds of things that have to happen that can’t happen if you are closing in on the end of life. And so, for my family’s sake, for sure, all the legal aspects are all buttoned up for me in case the unexpected happens, but also getting my head and heart around the potential for dying will help me cope when that happens. And hopefully that’s not till I’m 93.

Daniel Levine: I I think most people will think of cancer in terms of a physical body—your body at war with itself. You talk a lot about the mental and emotional aspects of cancer. In fact, your first piece of advice for someone when they get a diagnosis is to find their whys, why they want to fight the battle and win. Why is that?

Bill Potts: Yeah. So, a lot of cancer patients go through depression. People will go through what I went through, which is toying with the idea of giving up. The physical piece has been ugly. I can’t sugarcoat it, but it’s the mental and emotional part that can be as hard or harder than the physical part, because the physical pain can go away. The mental and emotional piece, you’ve really got to work on dealing with that, which in my case, it’s professional help or Facebook groups. Talking with other patients, faith leaders, those types of things, they can really help you. And then remembering every day why, and it’s not just for cancer, it’s in life in general, why I am doing what I’m doing. It really gives you the get up and go to go tackle what you’re dealing with, and in my case, the cancer fight. So, it’s every single day, Danny, I remind myself why I’m fighting cancer, and it’s those same reasons of family, friends, job, and to make God proud. And there’s a few others too, and it’s been life-changing for me to remember those each day.

Daniel Levine: What advice would you offer someone on how to deal with the emotional ups and downs of cancer and what kind of support or help should people consider seeking?

Bill Potts: Yeah, you can’t keep it all shut inside. Everybody’s going to go through it. So, first of all, lean on your healthcare team to give you some guidance. Places like Mayo and MD Anderson, Sloan Kettering, all the big players, all the high-volume cancer centers have social workers that can help you. They can find resources for you to talk about it, but you have to talk about it. And whether that is with a social worker, a professional therapist, or groups of other cancer patients, you need to talk about it with people that aren’t your family. So, I can’t put too much of a burden on my wife because she’s dealing with her own things. My kids are dealing with their own issues related to my cancer journey. So, you don’t want to be a burden to them. Yes, you can share a little bit with them, but you need to find support, not just for your own mental health, but also for those around you, their mental health that are dealing with you on a day-to-day basis.

Daniel Levine: You also offer some practical advice about staying motivated and the need to celebrate small victories, step-by-step progress, and your family and friends. Why does that matter?

Bill Potts: It’s a motivator. And so, for me, going through my last round of chemotherapy and immunotherapy, it was 14 rounds of it spread over six months. And I’m trying to parse this into small steps to get to the big steps. So, I would count up my treatments to the halfway point. Then I would count down to the rest of it. An easier way to deal with these big goals is to break it into small goals. I follow the same rules on the cancer journey. I celebrate birthdays with gusto. I just celebrated two years in remission with gusto. I celebrated the launch of the book with gusto. When I finished my treatment at Mayo Clinic in 2021, we rang the bell to celebrate completion of my chemotherapy and my immunotherapy. And I’m telling you, the beauty of ringing the bell as a cancer patient is it’s a way of celebrating an accomplishment for you, but it’s also a way to celebrate and inspire the healthcare team that has helped you get to that point. So at Mayo, I had the healthcare team with me. When I rang the bell, I was really shocked at how emotional that experience was.

Daniel Levine: The book is “Up for the Fight, How to Advocate for Yourself as You Battle Cancer” from a five-time survivor. It’s filled with loads of great advice and I think advice that would transcend cancer and really be helpful to anyone with chronic condition. Bill Potts, author and cancer survivor. Bill, thanks so much for your time today,

Bill Potts: Danny, thank you so much.

This transcript has been edited for clarity and readability.