A Healthcare Communications Student Gets an Education as a Patient

When Carly Flumer was 27 and working on her master’s degree in healthcare communication, she was diagnosed with thyroid cancer. Though she was successfully treated for the cancer, she now must live with the consequences of having had her thyroid removed, which requires lifelong care and treatment. The experience turned Flumer into a patient advocate as she has sought to share her story with others. We spoke to Flumer about her cancer journey, her experience in dealing with physicians who often spoke to her in terms she didn’t understand, and what she’d like other rare disease patients to learn from her experience

Daniel Levine: Carly. Thanks for joining us.

Carly Flumer: Thank you so much for having me. I’m so happy to be here.

Daniel Levine: We’re going to talk about your experience being diagnosed with a rare cancer, what you learned from your interactions with the healthcare system, and how it led you to become a patient advocate. You were a grad student; you were 21 when you were first diagnosed. What happened? How, did you come to learn that you had cancer?

Carly Flumer: I was actually 27 when I was first diagnosed, but still in my twenties, so I think that is still relatively young. I was at a physical and this is why I advocate for everybody to get their physical because young people like me think that they don’t need it. And they really do because it checks all of your bodily systems to make sure everything is going well. My doctor felt a lump in my throat and he said to go get an ultra sound. So, I did and it’s very important to follow up with all scans and blood work too. I did that and they found the lump, which ended up being benign, but then they also found my cancer. So, it was kind of found by mistake, and they told me I needed to see a surgeon to get it taken care of.

Daniel Levine: What was the actual diagnosis you got?

Carly Flumer: I got stage 1 papillary thyroid cancer, which is the most common form of thyroid cancer.

Daniel Levine: The thyroid is one of those parts of the body that I think most people don’t think about unless they need to. What’s the role of the thyroid?

Carly Flumer: I’m glad you said that because I didn’t know what a thyroid was until they were like, oh yeah, it has cancer. So, it plays a role in so many bodily systems that you would not even think of, including your heart rate and your metabolism and your mood and your energy levels and your bowel movements and your menstrual cycles if you’re female—so many different things that this little gland controls and that works with the pituitary gland in your brain—so, if you don’t have it, then you essentially pass on.

Daniel Levine: At the same time, given all the regulatory roles the thyroid plays, did you have any other signs of something wrong with your thyroid?

Carly Flumer: No, I was tired a lot, but I was also in graduate school and I was working full time. And so I figured that was kind of normal. Otherwise, I didn’t have any other symptoms and my symptoms were kind of void, during my treatment process. So, I was pretty lucky.

Daniel Levine: Still the word cancer has a certain weight I would imagine with anyone. What’s it like being told you have cancer and how did you react as a 27 year old, you’re in graduate school and your life’s ahead of you? What is the impact of that?

Carly Flumer: I think because I didn’t have symptoms, I was just kind of like, okay, well, this is how my life is going to be from now on and I went along with it. I did what my doctor said that I had to do and I went along with a plan, but it was my mom who came with me to every appointment who really did the research on the disease and helped to educate me about different treatment options, as well as the surgeon who I saw who was extremely helpful, very dedicated to the practice, very kind. He really helped me to understand what the role of the thyroid was and what the treatment [was], how it would affect my quality of life over time. I don’t know if I was scared, and was just kind of like this is how it is. I don’t really know how to describe it. I think I was sad and I was scared, but at the same, this is how I feel and it’s kind of normal. So maybe this is what having cancer feels like. And my case is just a little bit different.

Daniel Levine: I know you and I have talked about the fact that your doctor told you that you had a good cancer. I imagine people can figure out what he meant by that, but as the person with the diagnosis, what effect does his words have on you when he says something like that?

Carly Flumer: Sure. I actually really took that to heart. When I first heard that, I didn’t take that with a grain of salt as I should have, because I worked at a hospital at the time when I was diagnosed and I had asked my doctors, I have cancer and, I would like to know who you would recommend that I see as a surgeon. So, when they said, “What type of cancer do you have?” I mentioned thyroid. They said, “Oh well, that’s really nothing to be concerned about.” I was just like, oh well, maybe they’re right since I don’t have any symptoms, and this is really what thyroid can answer is because I obviously don’t have any experience with it and nobody in my family had it. So, I didn’t really have any experience to fall back on. I was just like, well, maybe they’re right, maybe this is how it is, and maybe I got very lucky. But, as I went through my treatment and through my cancer journey, I learned that that could be further from the truth and doctors really need to stop saying that because although the majority of cases are very good with thyroid cancer and we have a very great prognosis rate, at least for the papillary kind, at the end of the day, it is a disease that affects many people and it shouldn’t be talked down about just because of the good prognosis. It gives the patient a false outlook of how things may be because each patient is different and each patient is going to have their own experience. So, for them to tell them, oh, don’t worry, it’s okay—I appreciate the comfort, but at the same time, I don’t want it to be sugar coated to a point where my expectations are completely different from what I should expect down the road should anything happen or my prognosis change.

Daniel Levine: Well, what treatment options did your doctor say you had?

Carly Flumer: I had a tumor on the right side of my thyroid so I was given the option to take out just the right side of my thyroid because, and I didn’t know this, but you have two sides to your thyroid—two lobes and you can live with one half of your thyroid just fine. If you take out the entire thing, you have to be on a supplement, and that will pretty much replicate all of the functions that your thyroid does. So, I was given the option to remove just the half of the tumor or to remove the entire thing. My doctor he really talked to me about that and he was really considerate of what my values were as a patient. And I said I’m really focused on my quality of life because I am younger and I would like to have a better quality of life going down the line, and having to take a supplement for the rest of my life does not sound ideal. So, I opted to do just the partial thyroidectomy where just the lobe with the cancer was removed. I did that and then, and I don’t know if this is typical procedure or not, but they did pathology on my lymph nodes surrounding the area where my tumor was to see if they were cancerous. What that means is, depending on how many lymph nodes are positive for cancer, it could mean that there are more lymph nodes in your body that have cancer. I got a call two days after my surgery and I was in recovery at home. My surgeon said, well, we did pathology on your lymph nodes and over 80 percent of them had cancer. What that means is that unfortunately you no longer have a choice in the matter, we have to take out the other half of your thyroid and we’ll do that in three months. We want you to heal, but you’re going to have to come back and we’re going to remove the other half of your thyroid because the thyroid is very close to many other vital organs, including, your esophagus and your trachea and your voice box, and your layerings, and different things like that and you really need a surgeon who specializes in [these] surgeries because one nick and your voice can be altered. So, it was very important.

I had researched my doctor who had done thousands of thyroid surgeries, but when I had my second surgery, it’s not a guarantee that all the tissue is removed with that surgery, because the thyroid is close to many other vital organs and it is possible for a surgeon to miss some miss some thyroid cells. No surgeon is perfect. So the next step was to receive what’s called radioactive iodine therapy, which is a form of radiation that is taken orally. You take a pill and you become radioactive throughout your entire body. What that means is you have to stay isolated from people and pets for a certain period of time, which kind of prepped me for coronavirus, thank you thyroid cancer for that. Over time, within a few days you’re able to come within a certain number of feet from your parents. I was living with my parents at the time. So, when I first came out of radiation I could be within 20 feet and then over time I could do 10 feet and then six feet and then three feet. The radiation, the main way that it releases from your body is through your urine, so, when I went to the bathroom, I had to flush three times. When I washed my hands, I had to wash two times and then any sheets that I used had to be thrown away at the end of my radiation treatment. It was a very involved process that also required very immense preparation. So, that was the extent of my first year of treatment, diagnosed in January of 2017 and I finished both of my surgeries and radiation by December of that year.

Daniel Levine: What are the implications of living without a thyroid?

Carly Flumer: Because you don’t have a thyroid anymore, you have to take a supplement. It basically replaces all the functions that your thyroid did. When you are first placed on the supplement, the dosage is basically a guess by an endocrinologist or an oncologist, depending on who you see. So, the dosage is guessed based on age and your weight and your gender. They basically look at you and say, okay, well, we’re going to start off on this dose. They measure you over time with a couple of your thyroid hormones called T3 and T4. Those will determine what your dosage is doing, whether it’s helping you or whether it’s hurting you. When you do not have a thyroid anymore, you’re placed into what’s called hypothyroidism and you want to remain hypothyroid so that your levels remain stable and another tumor marker called thyroglobulin remains at a very low level. Thyroglobulin is a tumor marker that is watched over time. If it happens to rise, then that means that something is going wrong. The supplement that I take is called levothyroxine, which helps to alter the thyroid hormones in the body, as well as the thyroglobulin. As your body changes over time, and especially for women as we age and we enter menopause, your levels can be very different. Your levels, which are affected by the dosage of your medication, can affect different aspects of your life. So, hyperthyroidism, which is the opposite of hypothyroidism, each one of those come with comes with its own set of side effects. So, you can be very cold or very hot. You can have a very, high heart rate or a very slow heart rate. You can be very anxious and nervous or very sad. For females, your menstrual cycle be affected and there’s just a bunch of different things that you wouldn’t even consider that this little thing in your body can do. And  the saying goes, you don’t know what you have until it’s gone. For me, that was how it truly was and how it truly is without having a thyroid to do all of those things for me.

Daniel Levine: In some ways it sounds like you traded one disease for another.

Carly Flumer: In a way, yes. It is hard to find the right dosage, especially as your body changes over time and having all of those symptoms to go along with it isn’t the best way to have a quality of life, but you have to be able to manage that. I’d rather have the cancer out of my body than to be living with that.

Daniel Levine: But in the same sense, it sounds like in many ways you’re living with a chronic condition. How long a process did you go through before you were pronounced cancer free?

Carly Flumer: Well, so thyroglobulin, that’s my tumor marker, that had always been above zero, which is not ideal, but it wasn’t very high. My doctor is an endocrinologist who specializes in endocrine disorders, including thyroid cancer. She has been watching that over time, ever since my diagnosis in 2017. And I had my blood work done every three months and then moved to every six months, and an ultrasound of my neck once a year. With that, we had been monitoring my levels of my thyroglobulin, and it had never gone down to zero in the past four years until 2021. So, I was asking about that and I said, why isn’t this going down? What could be the issue? And she said, well, for some patients, it doesn’t go down and they end up being fine. For other patients, it can take years for it to go down. So, I just kept that in the back of my mind. I still did my blood work and I still did my yearly scans. in 2021, almost a year ago, I did my yearly scan and I had a positive lymph node, meaning I had a lymph node in my body that was detected as cancerous. I went back to my surgeon and I said, I’m back. I have more cancer in my body and I want it removed. So, I did a third surgery in April of last year. Then recently in December, about a month ago, I had my blood work done and my thyroglobulin was at zero finally. So, it took me almost almost six years to be deemed cancer free.

Daniel Levine: It sounds like your mom was there to help and support you. Did you reach out to other patients who had been through this?

Carly Flumer: Oh my gosh, yes. Because I was in graduate school during the time of my treatment, I was really able to apply what I was learning in my classes to what I was going through with treatment and vice versa.

Daniel Levine: And just for a moment, you mentioned you were in graduate school, you were studying healthcare communications?

Carly Flumer: I was, at Boston University, but I was doing it online. That’s how I was able to do treatment, do school, and then also work full time. I knew when I left graduate school that I wanted to help cancer patients and I had joined support groups. I didn’t know support groups existed until after I finished all my treatment in 2017, which was very sad. They don’t talk to you about that stuff and they really should because they’re immensely helpful. I was talking with some support group people and I learned about patient advocacy and the power of sharing and I said, I can do that. My story is pretty unique since I was able to use my graduate school courses and be able to be able to go through treatment and do everything at the same time and be able to utilize what I learned to leverage my experience and help other people. I started telling my story through different blogs and then I started to look into different career options with cancer. So, after I left the hospital, I was recruited by one of my colleagues with the National Cancer Institute. I worked as a contractor for them where I translated scientific protocols for clinical trials into lay friendly language and I did that for about two years. Recently, I started as a director of medical engagement for a health communications agency that focuses on recruiting patients for clinical trials for patients with cancer and rare diseases. That’s what I’ve been able to do with my paying job. As far as my advocacy work, and I had been on podcasts  such as this one and others, just telling my story and emphasizing the importance of the different aspects of cancer, including researching your physicians and researching different treatment options and making sure that you have a good relationship with your oncologist or whomever you see for cancer treatment and being able to tell your story and advocating for yourself and how important it is. When I was going through my own treatment, I didn’t really do that. My mom kind of did that for me and she really showed me the importance of standing up for yourself and the health aspect world. I think we are taught, or at least it was the norm, I guess, back in the day, that doctors were all knowing and what the doctor says goes, and that’s the mindset that I had. But as I started to learn more about patient advocacy, it’s really what the doctor says, but it’s also what the patient says too, because we are experts of our own body because we live in them every day. As a result, it really takes a good structured patient physician relationship to inform the outcomes of treatment. Because if you don’t have a good relationship with your physician, what is your compliance going to be like with your treatment? Are you going to be a savvy patient and go through with all of your scans and your blood work, or are you going to be questioning everything because you don’t really trust your doctor? That’s where it’s really important to understand that. And then I think physicians also need to advocate for their patients as well, because they’re part of the healthcare system too. And we’re all humans, we need to be treated as such and not as numbers. I think that’s how it is in primary care and I’m getting off on another tangent here, but there’s only so much time that doctors have with you as a patient. And I think both doctors and patients feeling that constraint. It’s just like, you know what, I really don’t feel like I have the time that I need to spend with my doctor to be able to get across the issues that I have. And so that’s where patient advocacy comes in and preparing for your appointments and knowing what questions you want to ask and bringing any research that you find to the table and saying, I I’ve read about this. Can we talk about this? Or this is what I’ve been feeling, or these are the questions that I have. Can we talk about this? So that we don’t as patients feel that our time is wasted when it comes to our appointments.

Daniel Levine: Well, you were getting a degree in healthcare communications and as you were going through this, what effect did the experience of being a patient have on your studies and what you decided to do afterwards?

Carly Flumer: Sure. I really wanted to go into graduate school for health communication, with an interest in advertising and graphic design because I really enjoyed that aspect—the advertising process and helping get the message across to patients. But then I was like, there are so many other aspects of health communication that I really do not know about. That includes, building the patient physician relationship and learning about health literacy and making sure patients understand what was coming out of a doctor’s mouth, because oftentimes we don’t know what doctors are saying to us because they’re not using language that we understand. I learned all about that through my coursework. And you know what, I could very much be applying that to what I am going through right now, the doctors that I am talking to are using this language about different blood work and blood work tests and hormones. I’m like, I have no idea what they’re saying. My surgeon saw that I didn’t understand what he was saying. And he was like, would it be helpful if I drew a picture for you? That was immensely helpful because he saw that I was confused, and he took the extra time to make sure that I understood what he was saying. I don’t know if most doctors do that. They kind of assume that if patients say they understand, they understand, and they don’t question it, which makes sense. But again, as patients we might be afraid to speak up and instead just say, “Yeah, I understand. Sure.” And then we leave feeling like, what the heck did they just say to me? So, I learned through all of my coursework that you need to have, that kind of relationship developed with your providers and with your whole healthcare team, and that it’s really a whole effort and it’s not just a one-sided relationship. It’s not the patient doing all of the work, and it’s not the physician doing all the work either. It’s really a collaborative environment where, health outcomes are affected. We talked about health disparities and health inequities, and that all goes along with the doctor-patient relationship and how patients are being treated. I think the sort of silver lining of COVID has been that we have seen a lot of that exacerbated, the inequities and the disparities that patients are facing, especially patients in rural areas, and African American patients and Hispanic patients with vaccine rates and different things like that. This has been going on for a very long time in the oncology space and in many other aspects of care and COVID is really putting a spotlight on it and saying, look, this has been on you for a long time. This is the time to fix it, and we need to fix it right now, you know?

Daniel Levine: Well, if you had the opportunity to go back and talk to the doctors who cared for you, what would you tell them about the way they interacted with you?

Carly Flumer:  The surgeon that I had for my first two surgeries I had for my third surgery. So I had him for every single surgery, all aspects of my treatment. And I cannot thank him enough for the time and the patience that he had with me and my family and helping all of us to understand what my options were and how my quality of life would be affected over time. At the end of the day, this type of cancer wasn’t going to kill me, but he still understood my worry and he really took that into account not just as a physician, but as a human being. And I think that’s something that all physicians really need to strive for.

Daniel Levine: How did you move into the realm of patient advocacy? What drove you in your experience to do that and how are you acting as a patient advocate?

Carly Flumer: Sharing my story. I had read about other patients’ stories and it was like, well, I can do that too. So, I was networking on LinkedIn and I happened to come across a gentleman who has been extremely helpful and I’ll shout out to him. His name is John Novack, and he worked with a company called Inspire and he got me in connected with the editor-in-chief at the Philadelphia Inquirer. I pitched my story and she said, well, we have too many stories like yours. I didn’t really know what to think about that because I was like, well, my story is kind of different. Every patient’s story is unique, so I’m not sure what you mean by that. Maybe she meant we have stories about cancer from cancer patients and we’re looking for a different angle. But you know what, I didn’t let that stop me. I looked for other advocacy organizations and patient-led organizations that would accept my story. And I just kept going from there and I just kept sharing it and sharing it, different aspects of it in a different perspective of what it means to be a cancer patient, and a young cancer patient. The AYA, or the adolescent and young adults, advocacy or patient realm is very unique because we’re a different bucket of patients if you will. We’re not the pediatric age, nor are we the older age, we’re kind of in-between. So, we have a lot of different aspects of life that neither the pediatric or the adult populations face, including choosing a career, dating, going off your parents’ health insurance for the first time, and different things like that, and they are not really considered when we think about people my age who were diagnosed with cancer at that time in their lives. So, I’ve used that to leverage my experience and to bring that into different perspectives of my journey and talk about what it was like or what it is like to be at my age and to go through all of these different aspects of life that are hard enough in the first place, much less with a cancer diagnosis, and speak about that in a way that will hopefully resonate with other patients and  maybe it’ll give them some courage to share their story and advocate for other patients because at the end of the day, we are all unique. We all have our different stories, but we all have cancer—that is the common factor and we don’t want to do this alone and by ourselves, even though we think we can, and sometimes I thought I could, I was very stubborn and I didn’t want any help. But you do need that friendship, that familial aspect of care. And sometimes all it takes is having somebody with cancer to share that experience with you because most other people who don’t have cancer, they don’t know what it’s like unless they’ve gone through it. It might be hard for them to understand what you’re really going through, and they can try and empathize as much as possible. And of course, we appreciate that, but at the same time, it’s just like, you know what, I don’t think you’re getting at what I’m really saying to you and what I’m feeling. So, that’s why sharing your story with other cancer patients is so powerful because people do understand it and they are really able to say, you know what, I’m going through that too. Let’s talk about that.

Daniel Levine: What advice would you have for other patients who may not feel they’re getting information they need in an understandable way from their physicians?

Carly Flumer: I would say join a support group. There are tons of them online and well, not so much in person anymore with COVID, but maybe once that’s over, there are Facebook support groups and on Twitter, the healthcare space is very active on Twitter, and Instagram. there are many different accounts you can follow to share your story. You can start a blog, and just sharing your experience through that can really be beneficial. If you are not understanding something that your physician is saying, tell them, don’t pretend that you understand them and then walk away confused, because that’s not going to help anybody. Again, this is a collaborative process, and you don’t want to be left out. This is your body, and this is your life. And I would hope that you would want to take the best care of yourself to have the best life that you can. Part of that comes with developing the relationship with your physicians and with your care team, and then with the people surrounding you and making sure that you’re taking care of, because that’s really important.

Daniel Levine: And how about when communications just seem to totally break down with a doctor, any advice you’d give to a patient?

Carly Flumer: Sure. if you feel like you’re at your wits end with a doctor, there are always other doctors. It is okay to say, you know what? I’m just not vibing here with you. I think I might need to see somebody else or seek a second opinion. And what will any good doctor say? I respect that and maybe they can even help you find somebody.  You don’t have to tell if you don’t feel comfortable saying that; you don’t have to tell, and you can find another doctor on your own, but that’s why there are so many doctors out there and not every doctor is going to match what you’re looking for and your values and your expectations. So, it’s really important to find a doctor that does take that into consideration and doesn’t just focus on the numbers of your blood work, but focuses on you, on how you’re doing as a human being. And so, if it takes finding another doctor to do that, then do it because you you’re hurting yourself if you stay in a relationship with a doctor that you just don’t feel like you’re getting help from.

Daniel Levine: Carly Flumer, cancer survivor and patient advocate. Carly, thanks so much for your time today.

Carly Flumer: Thank you so much.

This transcript has been edited for clarity and readability.