Melanoma and Immunotherapy: Tara’s Journey to Become a Cancer Patient Advocate

When Tara went to get a haircut in March 2015, her hairdresser made a shocking discovery: an unraised reddish-brown mark about the size of a half dollar with a small black center on top of her head. The following week, Tara was diagnosed with stage 1 aggressive metastatic melanoma.

Within a year of her diagnosis, the cancer progressed to stage 3, spreading to her neck, and shortly thereafter to stage 4 when it spread to her brain. She was told she had a 25 percent chance of survival and five years to live. Through her journey she had 13 tumors in her neck and brain.

She endured four surgeries in the first two years, including one brain surgery and eight months of seizures. Each experience required long periods of healing. At the onset of brain tumors, the immunotherapy pembrolizumab (Keytruda®) received FDA approval for advanced melanoma. Tara was one of the early recipients of the newly approved drug, a PD-1 checkpoint inhibitor. Her tumors responded to the immunotherapy and began to shrink.

In 2019, for the first time, scans showed no tumors in Tara’s neck or brain, and no new occurrences. Tara has also been seizure-free for almost three years. She received pembrolizumab infusions for 36 months, and recently decided with her oncologist to end treatment in October 2019.

We had an opportunity to ask Tara about her cancer journey, including her recent advocacy work.

Tara Ryan at the 2019 CRI Immunotherapy Patient Summit in New York City. Photograph by Hannah Cohen

CRI: You spoke about your experience as a melanoma patient on a panel at the 2019 CRI Immunotherapy Patient Summit in New York City. I’d like to hear more about your challenges immediately after your cancer diagnosis and surgery in 2015.

Tara: Being able to share my story at the CRI Summit, to give hope to hundreds of patients and caregivers was so powerful. It’s still unbelievable to me that this is my story, even though I have lived it.

When I was first diagnosed with stage 1 melanoma in 2015, I was in shock. In the beginning, your brain can’t take in how serious it is. You can't absorb everything your doctors are telling you. There's nothing like a diagnosis of cancer—any kind in any stage.

My oncologist sent me to a plastic surgeon who was able to remove the tumor without shaving my head. He removed a large portion of my scalp then pulled it together in a thin line down the back of my head. It appeared I lost very little hair. In 2016, I had two more massive surgeries, and again did not lose my hair as many chemotherapy patients do.

Since I looked healthy, and not “like a cancer patient,” people with whom I interacted on a daily basis did not take my illness seriously. They looked at me and often said, "Oh, you look great." I usually responded with, “A shower, a blow dryer, and lipstick are amazing!” They didn’t realize the severity of what I was really dealing with. Many people don't know what to say and don't realize it isn’t necessary to say anything. If they want to help, "What can I do?" is perfect. For me, a hug was amazing!

Cancer brain exists, even if you're not going through chemo. At first, I felt overwhelmed, fearful, and decision fatigued. I was researching my cancer, making doctor appointments, and getting scans, bloodwork, biopsies, and other tests. In the midst of it all, I lost my business because I was too sick to manage it; I lost a parent; I went through a break-up and a move as a result of that break-up. It was overwhelming. I didn’t have time for closure and was trying to figure out how to pay for it all.  

I decided to create a GoFundMe page to raise money. It was the first time I wrote about and shared my experience. I feel very grateful to so many who helped me through a very difficult time.

CRI: Many people do not understand that metastatic melanoma is life-threatening. In fact, it is the deadliest type of skin cancer. Is this a common misconception you encounter?

Tara: Unfortunately, many people have no idea how life-threatening melanoma is and didn't take my situation seriously. Many people do not know that skin is the largest, and arguably, the most important organ in our bodies. People often shared with me that a family member or friend had melanoma and “just got it removed… no big deal.”

I grew up on a farm and never wore any sunscreen or protective clothing as a child. Sunscreen back then was greasy and there wasn’t any sunscreen I could use on my scalp. Truthfully, we just didn’t know as much as we know now.

You’re very fortunate if you discover melanoma early and are able to remove it, because when it metastasizes it can be life-threatening. People often put off seeing a doctor when they notice changes to their body. I can’t express how important it is to get any suspicious mole or irregular pains checked by a doctor.

CRI: At the CRI Summit you also talked about a major turning point in your cancer journey when you decided to make changes to improve your health. Can you tell me more about this decision? What led you to take your health into your own hands?

Tara: There weren’t any treatment options available to me other than surgery for the first 18 months. I did research like it was my 9-to-5 job and followed my instincts.

When I was diagnosed with stage 3 melanoma, I decided that I wanted to be healthy so that if a treatment did become available to me, I would be well enough to receive it. I knew that my doctors were doing everything in their power to treat the cancer, so I asked myself, “What can I do to be as healthy as possible?” I dove into doing everything in my power to get my body healthy and to be empowered in my process.

The truth is, if you're not healthy enough, and your blood counts aren't good enough, you may not be strong enough to be considered for certain treatments. I wanted to be strong enough.

CRI: What were some of the things you did to improve your health and feel good?

Tara: I'm a native of Woodstock, New York, and, at the time, I felt like the only person who didn’t meditate, do yoga, or paint!

I did start meditating. I begin each day taking 15 minutes, or whatever feels right for me that day, to be quiet and still. I start each day by asking myself, “What should I be doing that's good for me today? What’s important today?” As a cancer patient that's often really hard and scary because you're so overwhelmed. You’re always worried about the bigger picture: surviving. It’s really important to calm yourself so you can make intelligent decisions. I find those answers every morning in my quiet time. I believe strongly that it’s important not to make decisions from fear. Calming the fear is key.

I made a conscious decision to eat organic at home. I removed all toxins out of my home. I changed how I was cleaning my home and my body. I changed everything that came into my household—sometimes that included people. I eliminated all negativity that I had the power to remove from my life.

I also started exercising daily. I did a half-hour of floor Pilates exercise, and everyday I'd have a little bit more physical strength. I am a social tango dancer, so I went dancing as much as possible. I worked to have as much joy as I could and to laugh. Yes, laughter and joy are the best medicine! Fun is so important.

Cancer changes your life. It changes the way you see everything, the way you think, the way you feel, the things you choose to worry about. It's a very profound time where you reevaluate every bit of energy in your life, and what stays and what goes. I created my own living, healing, and loving bubble.

CRI: How did it feel being one of the first patients to receive pembrolizumb (Keytruda®) as an FDA-approved treatment?

Tara: I had mixed feelings. I was very nervous about possible side effects. But nothing else was working. How many surgeries could I keep doing? I felt cautiously excited.

I wanted to begin Keytruda® based on all the research I had done, but prior to the brain tumors, I wasn't a candidate. Then, when they found the brain tumors, I became eligible for Keytruda®. Honestly, it sounds really ridiculous, but I kept saying to my friends, "Thank you, brain tumors." They all kept saying, "Oh my god, Tara. Only you would say that."  

I was also scared because my oncologist did not know if it would work, and if it did, it may take three or four months to start showing signs. About two months into immunotherapy, my oncologist found three new tumors in my neck. I considered having another surgery, but my surgeon encouraged me to continue the treatment. I trusted my surgeon and my oncologist, so I did continue. During this time I remained calm by meditating, exercising, dancing, and taking care of myself every day.

When my tumors did start to shrink after about four months of immunotherapy, it was the most glorious experience in my entire cancer journey. It was the first time that I had shrinkage of cancer tumors without surgery. The shrinkage was slow, but my tumors kept shrinking.

All of my doctors were, and still are, so excited every time I see them. It's kind of funny because they make me feel like I'm famous. I feel so lucky to be alive and healthy, and grateful for all of the patients who participated in clinical research to make this treatment available to me.

CRI: Advocating for yourself was a big part of your journey. I’d like to hear about your current advocacy work. What drives this work, and what do you hope to convey to others?

Tara: My experience really motivated me to help other cancer patients, especially those who may feel hopeless or decision fatigued. My goal is to help people feel comfortable talking about cancer and also make them aware of health care professionals who can support them while they are going through treatment. I founded The Integrative Complementary Cancer Support Group at the Reuner Oncology Center Support House in Kingston, NY, with this purpose in mind.

When I realized I needed to design a card, I asked myself, "Who am I? What am I?" I'm a "cAncer Hope Coach.” I never give cancer a capital “c”—it is a small c and a big A. I refuse to give cancer that much power.

I think the ability for cancer patients to be able to have an honest conversation with another cancer patient who has had so much success healing can be empowering. I'm a walking, talking, living, breathing, dancing, loving person that gives great hope for people to do what they need to do to get through this.

I've met so many people all over the country through this work. I’m stunned at how many times I've had a conversation with someone who doesn't know what type of cancer they have or don't know which stage cancer they have.

I do my best to ask questions rather than tell people what to do. It’s important to understand who they are and what their situation is. It’s important to hear them. It helps them feel at ease to speak to someone who can relate and understand how scared they feel. I often help people find research hospitals and get the information they need to find the best possible care.

CRI: What advice would you share with recently diagnosed melanoma patients?

Tara:

• Think about finding the closest facility to you that specializes in your type of cancer.
• Get educated. Read all of the information you receive from your doctor, then do more research. Yes, I know they tell you, "Don't do research. Don't Google." I'm sorry. I don't believe that. Google it. Look up everything, but pay attention to where your information comes from. Is it from a reputable source? That is really important.
• Consider changes to your lifestyle. I believe strongly in integrative medicine. Food literally feeds your body. Red blood cells, for example, need iron to carry oxygen and this plays a very important role in immune function.
• Exercise. It's so important. Whatever part of your body you can move today, move it. Tomorrow, you're going to be able to move it a little bit more, and a little bit more, and a little bit more each day. It will help you be stronger and have a more positive mental state.
• Be kind to yourself.
• Give yourself a break and take one day at a time. When you have cancer, sometimes it’s just one moment at a time.
• Finally, make your bed every day because on your worst day, that might be the only thing you're able to do. Before you know it, you may find yourself doing another good thing for yourself that day. Personally, this helped me so much. Sometimes the simplest of things are the biggest.

Now that my treatment has ended and I’m tumor-free, my energy is returning each week a little more. Last weekend my boyfriend and I went for a small hike in the mountains. When we returned home he said, “You wouldn’t have been able to do that last year.” That is correct. I’ve come a long way. I am so blessed. My life every day is truly a miracle!

CRI: Finally, I’d like to hear your thoughts and recommendations for reaching out to friends and family impacted by cancer and vulnerable to COVID-19.

Tara: COVID-19 has suddenly changed everything, including our face-to-face cancer support opportunities. We’re suddenly in a world where we need to learn how to use or create virtual support platforms. I’ve found that my prior day-to-day coping skills from my experience as a metastatic cancer patient have been serving me well at this time.

Now is the time to check-in with people. Everyone is in a different place. It’s usually best to ask someone impacted by cancer how you can help support them. Ask them what they need and how you can be supportive. Sometimes it’s helping with groceries and errands. Other times it’s listening and providing emotional support.

There are many support groups and free webinars that didn’t exist before COVID-19. I’m in the process of translating my in-person support group to a virtual support group on Zoom.

We’re all learning together through this time.

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Contact Tara for her “cAncer Hope Coaching” or information about the Oncology Support Program through HealthAlliance Hospital.

Read Tara’s Melanoma Story