Sue Friedman has been a force in the world of advocacy for patients with cancer for nearly 30 years. Now, she is sharing the latest chapter of her own story.
Friedman is the executive director and founder of Facing Our Risk of Cancer Empowered (FORCE), which she launched in 1999 after she received a diagnosis of breast cancer in 1996. Friedman later tested positive for a BRCA2 mutation in 1997, founded FORCE in order to inform and advocate for people with hereditary cancers, and co-wrote the 2012 book “Confronting Hereditary Breast and Ovarian Cancer,” published by Johns Hopkins Press.
“If I had known about my mutation earlier, what could I have done differently to confront cancer on my own terms?” she wrote in a 2020 column for CURE. “Perhaps I would have been able to avoid chemotherapy, radiation, lymphedema and multiple additional surgeries.”
After discovering a concerning lump in her neck shortly after returning home from the 2022 San Antonio Breast Cancer Symposium in December, Friedman received a diagnosis of thyroid cancer. She recently spoke with CURE® about the latest developments in her cancer journey and issues related to long-term survivorship.
CURE: What is the latest news in your cancer journey?
Friedman: (Here is some) background (information) too, because some of it really relates to my initial journey with cancer.
I am a veterinarian by training and was a practicing veterinarian back when I was diagnosed at age 33 with breast cancer, and then found out after that I had an inherited mutation. And I also ended up, because I was not properly staged the first time around and they didn’t check my lymph nodes and they thought I had DCIS (ductal carcinoma in situ) when in fact, I had invasive cancer, I ended up with a recurrence nine months after a mastectomy. … The doctors went back to my mastectomy from nine months earlier and found that there was invasive cancer in my breast tissue all along. And I ended up getting a second opinion, going to a comprehensive cancer center.
For many reasons, I ended up receiving fairly aggressive radiation therapy up my entire clavicular and suprascapular lymph node chain, because I never did have an axillary (lymph node) dissection. And these were the early days, my initial diagnosis was 1996, my recurrence was in 1997. And they weren’t doing sentinel node (biopsy) yet, it was still in clinical trial so that had never been an option. And they had not looked at my lymph nodes … except there was one in the surgical field. So, when I had a recurrence, now suddenly they knew that it had spread to my lymph nodes. But I had had a flap reconstruction, and there was concern about going back in and trying to take lymph nodes at that point. And so, the decision was made to give me fairly aggressive radiation after chemotherapy.
So, I had chemotherapy followed by radiation, and it definitely went up into the clavicular lymph nodes around my neck, and I actually pulled out my staging photos to confirm that I had radiation in my neck area.
And so, as a survivor, and I have a BRCA2 mutation, I try and be fairly conscientious about my health. But at some point, after about seven or eight years, I stopped going back to the comprehensive cancer center for follow-ups and really transitioned my care to a primary care provider and I wasn’t getting any specific follow-up related to my breast cancer. And in fact, I had just started to pursue, because I’m a BRCA2 mutation, screening for pancreatic cancer because there are now some guidelines … — that suggest that people with BRCA2 mutation should consider pancreatic cancer screening. So suddenly that was an option available to me, and I started to do that.
And actually, right before my first appointment with the GI doctor locally who was going to follow my pancreatic cancer screening, I found a lump in my neck. … I said, “I’m really concerned about this lump in my neck. Will you take a look?” And he said, “Oh, it’s your thyroid, it’s definitely your thyroid,” and referred me, I had an ultrasound screening and then I had a biopsy. And it looked like it was just going to be your typical, run-of-the-mill thyroid cancer, which is usually indolent, slow growing, not necessarily life-threatening. There have been some suggestions that maybe it’s being over diagnosed and screened, and we’re over treating — and interestingly, that was the same argument that happened with breast cancer and DCIS. And yet, there I was with invasive cancer. So I should have known better. But I didn’t.
One of the first things that I did was look up causes for thyroid cancer, and lo and behold, radiation is one of them. … What’s frustrating is that there is screening for thyroid cancer. You can have physical exam, you can have your doctor feel your thyroid, you can look for lumps yourself. And there’s ultrasound screening. And I never had any of that. And then, you know, there was COVID. And I did a lot of telehealth for physical exams. So, I didn’t necessarily have a primary care provider feeling my neck, so I felt this lump and the biopsy suggested it was going to be run-of-the-mill thyroid cancer but then I had my surgery, and I have a poorly differentiated thyroid cancer, it was actually fairly large, a centimeter and a half, and in the continuum of aggressive nature of thyroid cancer, considered fairly aggressive. And I had made some decisions based on the thought and assumption that it was going to be an indolent type of thyroid cancer and had a partial thyroidectomy. So I just had to go back and get the completion thyroidectomy so that I could be staged, and it’s just so different from breast cancer, the process is different.
And it’s been very instructive for me as a patient advocate. I feel like I’ve gone to continuing education classes as an advocate through reentering the health system in the cancer space, and it’s been very eye-opening and not necessarily really empowering.
And so, I just think that this is my experience, it’s one experience, there are so many survivorship issues out there as more of us are surviving our initial cancers that really aren’t being addressed. And I know at one point survivorship care planning was huge, although I kind of fell into that period of time before there really were survivorship care plans. And again, nobody had mentioned to me (about) checking my thyroid, such a simple thing. And I’m sure there’s other survivorship issues that are also falling through the cracks.
So, that’s my update. And I think at the end of the day it will hopefully make me a better advocate for others who are not getting the information that maybe they need to make good decisions on a long-term basis. The immediate cancer, that’s important, but (so is) how you can live well beyond (that). I was 33 (years-old) when I was first diagnosis, I had a young child, and I was fairly desperate to be as aggressive (as possible) and do whatever I could to keep the cancer from coming back so that I could make it to 60, which is my age now. And I’m very grateful for that. But I also feel very similar about my life and quantity of life and quality of life at 60 as I did 33.
As an advocate and as a patient and survivor yourself, what would you tell fellow patients are some questions they should be asking and some conversations they should be having with their care team related to long term survivorship?
That’s a great question. Before I get to that, I do want to address one thing. And that is that, you know,
I have a medical background as a veterinarian, not human medicine, but I have been an advocate for 25 years, so I have a lot of cancer knowledge, at least about breast cancer, which I had, but also other inherited cancers, but not thyroid cancer. And as a patient advocate, we’re often talking about empowering patients and helping them advocate for themselves. I have a lot of privilege. I know a lot of people, I know where some of the top cancer centers are and the clinical trials (that are) available, I know how to navigate, at least in general terms, the health system, and I have the resources to do it. Given all that, and all my privilege, this has still been a very scary and disempowering experience. And that is humbling. And (it) really, again, makes me recognize, when we say empowering patients, (for) people with less means, less knowledge, less resources, less contacts, what does that mean, when we say, empowerment? How do we do that? What can we do better? And so that’s the part too, that I’m trying to grapple with myself, on behalf of other people. And I wanted to say that first because we talk so much about empowering patients, and that is really important. But it emphasizes that just telling a patient to be your own advocate, to ask these questions, to know this information may not be enough.
It’s been a long time, I’ve had friends and loved ones and people in our community who have shared their recent experiences, but when you go through it, you really recognize our health system has really changed since the pandemic. And it appears that as great as our health system is, and there are great providers out there, they seem a lot more overwhelmed. There are more doctors not taking new patients. Getting a second opinion seems to be harder, there are physical barriers to accessing care. And so, when we say, “Get a second opinion,” which is always great advice, that’s not always easy. And one of the places that I contacted, they were like, “Yeah, we need you here for five days, we’re going to repeat every single one of your scans,” which my health plan has already paid for once, they paid for it at a very highly qualified, NCI-designated comprehensive cancer center. And yet, I had another NCI comprehensive cancer center, saying the quality wasn’t good enough.
And these are small, they’re just examples. But if we tell somebody who can’t take five days off to go get a second opinion, how is that helpful? Will they be able to do it? I had a hard time doing it. I’m not trying to be a naysayer and just look at the negative, but just really point out that, although I may have some suggestions and questions to ask, I’ve recognized it’s not always easy for patients to take matters into their own hands and do it.
So, I would suggest, if you’re at a facility that has a navigator, that has anybody who could provide you with assistance in navigating the health system, getting a second opinion, getting your records, understanding your records, sending you to the right place to understand your records, take advantage of that. Make sure, because it may not be offered to you but it may very well be available.
The other thing is recognizing that the health system you’re in, and especially if they’re really busy, may be providing you with the options that are the ones they are comfortable with, or the ones that they do, or the clinical trials they have, but that may not be a full range of options. And so, to the best of your ability, and there are a lot of great patient advocacy groups and you can go to clinical trials.gov and they provide assistance for navigating for clinical research studies, try to get as much concurrence on what all your options are from experts. Be careful about just googling it or going on the internet with that. And obviously FORCE has published a lot about that and finding reliable online health information, because not all health information online is created equal.
So, I’d say that really trying to understand your situation, and that includes getting a copy of the tests that you’ve had ordered, what lab work has been done, what tumor testing has been done, what genetic testing has been done. And it is complicated, and so full of jargon, and you almost need to take time off work to just sit and study and understand it. But as much as you can get people to explain to you, or websites or organizations or a health care provider or navigator who can explain to you in plain language what tests were done and what they mean, that’s really important as well.
There are so many organizations out there, and FORCE partners with as many of them as we can and elevate the work they’re doing that provides navigation services, that provides financial navigation, provides resources to help people overcome barriers. So, I would say trying to connect with the ones that are highly qualified and vetted is a good place to go.
And then, at some point, you reach information saturation, and you have to make a decision. And you may not like your (options) but at some point, you have to say, “I’ve researched all I can, I’m getting diminishing returns on the hours I’m spending trying to get more information. And here are my options,” and then you make a decision based on all the things that matter to you. And part of that may be having a healthcare team that communicates well with you.
I’ll say one other thing, because it really has become relevant, so I’m going to disclose something really personal, but I think it’s relevant for anybody who has the same challenge that I do. I have generalized anxiety disorder, and it really affects everything I do, how I communicate and the decisions I make. And I’ve started to communicate that with my health care team so that they know when I react to something — I’ve had to, even as an advocate, even at a cancer center, remind my oncologist that I am a deer in the headlight. So, disclosing where you are emotionally, asking if they have emotional support, having your own emotional support system there, communicating with them as much as you can (about) what your needs are ahead of time as you navigate a new diagnosis or information, all that is so important.
And all this is really more about diagnosis. I guess part of it that I didn’t address is, as a survivor, what do you need to pay attention to? I think some of it is just really paying attention to your body. I think one of the things that I did was, I did let my guard down quite a bit. I had, perhaps some changes, like in my voice, that may have indicated something. And I was like, “OK, well, I’m getting older,” but paying attention to your body with trying not to obsess on it. And reading up as much as possible, making sure your primary care provider knows, “Hey, I’m a long-term survivor of breast cancer. These were the treatments I had.” Your doctor may not know what the long-term risks are.
I saw that (U.S.) Rep. (Debbie) Wasserman Schultz is proposing legislation on survivorship, I think there’s been a lot more focus on survivorship. I hope there’ll be more focus on survivorship education, and some of those long-term effects that have remained unstudied or under-studied, like cardiac consequences, not just second cancers, because those certainly need to be studied, but cardiac consequences, mental health consequences, chemo brain, fatigue.
I mean, there’s just so much of it, and it is easy to be overwhelmed. But, some of it may be more predictable. If you’ve had radiation to your neck, for example, or to your chest, here are some of the secondary cancers that you may need to be concerned about, for how long over time. And so really, based on the cancer you had, and the treatment you had, what are some of those long-term consequences?
And I know for us at FORCE, but I think all of the advocacy groups are trying to make sure that we’re educating people about these types of consequences without overwhelming them. I mean, we don’t want people to decide not to take treatment. I would go through the treatment I had at 35 again in a heartbeat. I strongly believe as someone who had a very soon recurrence for what they thought was a really early stage cancer, that was eye opening, and I went from, “OK, you have a 98% chance of never having your breast cancer come back” to, “OK, you’ve had one recurrence and so that increases the chances of another.”
I really believe the radiation I had saved my life. What I would have done differently was stayed more in tune with the types of secondary consequences and just (known) what to look for and what to have my doctors look for and trying to put it in the right order of concern, which isn’t easy. And I think that knowing that, for example, having my primary care provider feel my neck, feel for a lump (was important). I mean, by the time I felt the lump, it was big, and I don’t really feel my neck — it was only because I had traveled to San Antonio, I had a little of a sore throat and I was like, “I wonder if I have COVID? I’m testing negative,” and I was feeling my neck, “Are my glands swollen?” and I was like, “Well, wait, wait, what’s this? There’s a lump. Holy smokes,” and then I was feeling it every day, and then it wasn’t going away. And then I had a doctor’s appointment and I asked him to look at it, but I would have been a lot more proactive had I known. And I think we have to figure out from the advocacy (standpoint) and those of us who developed educational materials, how to signal the importance, the risk, and the things people can do so that we’re allowing cancer survivors to enjoy their survivorship. But also, be vigilant and figure out where those opportunities are to potentially avoid or treat early some of the late-onset consequences that can happen along the way after cancer treatment.
This transcript has been edited for clarity and length.
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