Transforming Experience into Advocacy

In December 2015, Judy Perkins became the first metastatic breast cancer patient to be declared free of disease after a course of immunotherapy using Tumor-Infiltrating Lymphocytes (TILs). When the results were published in Nature in June 2018, oncologists and patients everywhere gained a new hope in the fight against breast cancer.

I spoke with Judy Perkins about her experience receiving immunotherapy for metastatic stage 4 breast cancer after the Patients as Partners US conference in March 2019. 

Caroline Offit: What has it been like sharing your experience as a metastatic breast cancer veteran?

Judy Perkins: I have shared my story at multiple conferences. In the past I’ve spoken at conferences for researchers, so they were more interested in why my therapy worked and how I felt during my treatment. At the Patients as Partners conference I focused on my experience trying to access clinical trials.  

When I was first diagnosed with early stage breast cancer in 2003, my treatment plan involved surgery only.  I faced many challenges when the cancer returned in 2013 as metastatic stage 4 breast cancer, especially trying to access clinical trials and struggling to find somebody to talk to. I was told the cancer was “treatable but not curable,” and that I had three years to live. Initially, I spent weeks trying to enroll in a clinical trial. I finally found out that I wasn’t a good candidate for that trial, which I wish someone had told me right at the beginning. So, it was a very frustrating experience for me. I started standard therapy with my local oncologist. Over the course of two years, I received hormone treatments and chemotherapy.  

In the spring of 2014, by the time I got to a comprehensive cancer center to search for clinical trials, I found out I had disqualified myself from the IBRANCE trial that was happening at the time because I had started standard treatment. That trial was buying people two years of life, so I was really frustrated about that. And I never did get in that trial; that trial closed in the summer of 2014.

Then in January 2015, my oncologist sent my tumor biopsy off to Foundation One and found out I had an amplification of FGFR1 (fibroblast growth factor receptor one), so I qualified for a clinical trial with a targeted therapy called Lucitanib. That trial worked for almost six months. That was my first experience with a somewhat successful clinical trial.

The following summer, I met Dr. Stephanie Goff, a researcher on Dr. Steve Rosenberg’s team at the National Cancer Institute. At an advocacy training, Dr. Goff told me about their therapeutic cancer vaccine using Tumor-Infiltrating Lymphocytes (TILs). Within a couple weeks of beginning the TILs clinical trial, I could feel the tumors in my chest wall shrinking.

The TILs trial, of course, had the miraculous cure. So, I’ve had a good run like with clinical trials. I’ve been cancer free since May 2016.

Judy Perkins in conversation with Mary Stober Murray, MBA, at the 6th Annual Patients As Partners U.S. Conference.

Caroline Offit: On the Patients as Partners panel you said, “I am sick of telling my story.” Knowing that your recent advocacy work has required you to tell your story multiple times, and as you mentioned, for different audiences, I wonder how and if the way you tell your story has changed over time?  

Judy Perkins: In telling my story, I try to understand what point of view the listener has: What are they interested in hearing about my story?

Initially, when the success of the TILs trial went public in June of 2018, I was telling my story to hordes of reporters who were looking for a 30-second soundbite. I had to tell my story very quickly.

Then, there’s the story I tell researchers, there’s the human-interest side.

Then there’s the story we’re talking about, which is the importance of patient advocacy and involvement with clinical trials. Now that I have the time, energy, and the health, I am focusing more on trying to get more people aware of clinical trials. I am trying to make a difference in this space, focusing on helping other people advocate for themselves.

Caroline Offit: At the Patients as Partners conference, you were listed as “Cancer Veteran.” Why did you choose this language rather than “cancer survivor”?

Judy Perkins: I stole that from Lynn Sherr at The Atlantic’s People v. Cancer event. I like the word 'veteran' because it seems to suggest a more active and engaged role in the fight. Are you a civilian in the war, or are you in the military fighting? It has a different heft.

Caroline Offit: Many patients and caregivers stress the importance of trust when communicating with their oncologists and healthcare team, especially when thinking about participating in a clinical trial. Does this resonate with you?

Judy Perkins: Well, part of the issue of communicating with your healthcare team is whether or not they want to be communicated with. Some teams are better than others at working with the patient as to help inform the decisions about the path forward. Sometimes you need to find a different oncologist.

I have worked with both kinds of oncologists. If you find yourself with one of the old school, patriarchal “I know what’s best for you; just be quiet and do what I say” types, you can still work with them; you may need to be more active in telling your oncologist that you want to be a part of the decision-making process, and be able to be forceful about how you intend to participate. They can be educated, and they can be moved.

Caroline Offit: How are you transforming your experience as a cancer patient, and now cancer veteran, into advocacy work?

Judy Perkins: When I found out I had metastatic breast cancer, I called my cousin, who is a very seasoned breast cancer advocate. She immediately connected me to a Metastatic Breast Cancer Network (MBCN) Conference—they had those back then—so I went to two of them. The first one was in Houston; the following year it was in Chapel Hill, and when I got there, I met Shirley Metz, who is the head of MBCN, and she suggested that I get involved with National Breast Cancer Coalition (NBCC). I wanted to get more involved, to use my story to be helpful, to raise money, to do what I could at the time. 

In the spring of 2014, I went to my first summit with NBCC. Advocates at NBCC got me into the Breast Cancer Research Program, doing grant reviews, which I absolutely loved. Eventually, I worked my way up to Project LEAD. So, I sort of did it backwards. Most people do Project LEAD first, and then Breast Cancer Research Program (BCRP) reviews, but I did it backwards.

Caroline Offit: What are the issues that are most important to you right now?

Judy Perkins: With the current political environment, everything’s so divided, it’s very difficult to move any legislation forward. At the moment, we have two legislative priorities at NBCC.

One is to maintain funding for the Department of Defense (DOD) BCRP, which is fairly safely protected in the DOD budget—that’s 130 million dollars this year. NBCC is responsible for that money. I’m thrilled that it’s continuing and that patients are involved in the review process.

The second priority is our initiative to eliminate the waiting period to qualify for Social Security Disability Insurance (SSDI) benefits and access to Medicare. Right now, the wait for the disability benefits is five months, and the wait to qualify for Medicare is 24 months.

Metastatic breast cancer gives you an average of three years to live. So, if you get too sick to work, and you lose your healthcare, you can’t rollover to Medicare for two years. That means you have no access to treatment while you’re actively battling stage 4 cancer. Generally, you’re a 50-something-year-old woman who has been paying into the system for 30 years. So, you’re going to die young, not get your Social Security, and not have access to healthcare suddenly because you just are too sick to work. It is a devastating gap that is affecting a lot of people with metastatic breast cancer, and it is a glitch in our system that we need to fix.

Caroline Offit: Are people who are currently in treatment, facing that situation, able to lobby for themselves? How can they get their stories heard and help fix this issue?

Judy Perkins: To be honest, a lot of the people that are out there lobbying are not fighting active disease. Sometimes we get a few who are in treatment, but it’s hard to do that when you have metastatic breast cancer. At some point, you start to get really sick and have to focus on yourself.

Most people lobbying had early breast cancer, maybe even decades ago, and are survivors. If you stay in the advocacy world for very long at all, you lose friends constantly. The myth that the early stage advocates don’t care about metastatic breast cancer is really not valid. It becomes really hard to stay engaged, to be honest, when you are losing friends.

Judy Perkins in conversation with Mary Stober Murray, MBA, at the 6th Annual Patients As Partners U.S. Conference.

Caroline Offit: As you mentioned, your story has been shared in countless articles, videos, and conferences in the past year. It is incredible how you have already used your platform, your time, and your energy to educate others. What drives you to do this work?

Judy Perkins: At this point, it’s my karmic duty to give back. I benefited from the system; the taxpayer dollar paid for my treatment at the National Institute of Health (NIH). My involvement with the NBCC allowed me the chance to meet Dr. Goff, who was a member of Dr. Rosenberg’s team at the NIH. I’m doing what I can to give back. So if my story can help keep these organizations alive and moving forward, then that’s what I’m here to do.

Caroline Offit: What has driven your work in consumer review? Why is it important for patients to be involved in clinical trial design for future patients?

Judy Perkins: If you stay involved long enough, sometimes higher-level advocacy jobs open up and you can get into them. When I had metastatic breast cancer, I initially felt kind of entitled, like “OK, I really have cancer and I deserve more of a seat at the table than you early-stage people. Get out of my way; I know what I’m talking about.” Since then, I’ve calmed down and learned from the people who have been in the patient advocacy world for a long time. They have developed relationships with people that can help move things forward. They know who the researchers are; they know their state representatives whom they can lobby to push legislation and help move government policies forward.

The perspective I focused on at the Patients as Partners conference is that you need to work with the patients who are involved in clinical trials to learn how you can improve protocols. You can look at some of the low-hanging fruit: Why don’t people participate in clinical trials, or why do people drop out?

For example, every time I go up to Bethesda for follow-up in the TIL trial, the appointments are spread out over two days. The first day I go for scans, and the following day I come back for 15 minutes for them to say “Yep, you’re fine.” Luckily, I’m not working anymore. For people who are working—that’s two days, plus travel. You’re going to end up having patients drop out of the follow-up because going all the way to Bethesda and taking two or three days out of a workweek is burdensome.

It seems like protocols could be simplified to reduce the burden on the patient and their family, if nothing else. Is there a reason I can’t do the blood draw and scans near home? Ultimately, you’re indebted, you’re still alive, so it can be hard for us to complain.

Caroline Offit: It must also be stressful to wait a full day to hear your results. That is such a complicated mindset—to be both indebted to the protocol that saved your life, but also critical of some aspects.

Judy Perkins: It’s just easier for them to have all your scans and stuff the day before, and then when they see you on the clinic day, they have all the data there and they can quickly review it. I understand why they do what they do, but it’s designed to make it easier for them, not for the patient.

Caroline Offit: I’d like to know what advice you would like to give others who are looking to get involved and improve the patient experience?

Judy Perkins: For people who are currently dealing with disease, I have three thoughts: (1) get a second opinion; (2) try to get to a comprehensive cancer center for treatment; and (3) investigate clinical trials to see if you might be able to participate in one.

For people who are looking to get involved with advocacy work, my advice is to find out what your heart is interested in. If you’re interested in being part of a patient support group, find one near you and get involved. If you want to help make scarves and hats for people who have lost their hair, there are ways to do that. What I do is not necessarily what other people want to do. Some people enjoy throwing galas and raising money, and that’s awesome. Some people enjoy dragon boating, which is awesome.

I am a geek, so I tend to like being involved on the more technical side of things: working on what our legislative priorities should be; reviewing research grants; being involved with the CIRB; and reviewing clinical trials coming online. It’s just in my blood.

To read Judy’s full story, please visit her ImmunoCommunity profile. We invite you to join the ImmunoCommunity to share your experience with immunotherapy.

To learn more about the latest immunotherapy research and treatment for breast cancer, we encourage you to attend or tune into the CRI Immunotherapy Patient Summit Series.

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