The Size of a Pea – My Melanoma Story

Guest blog post from Ellen Errico whose husband found a small spot on her back that ended up being stage 3a melanoma. Read her story here: 

In late May of 2019, I asked my husband John to put some sunblock on my back before heading outside to enjoy the sunshine. There had been a spot about the size of a pea on my upper back for a long time. I had been to the dermatologist and had been keeping tabs on it over the years, but, like a lot of things, life got in the way.

“It looks different,” said John. “You need to get this checked out.”

He took a picture of the spot and sure enough, it did look different. It used to be a flat, dark brown, almost oval-shaped mole. Now, it had a dark, navy blue center to it, was more raised and had a bright red ring around it. Less than a week later, I was able to go see Dr. Shabnam Shahabadi, my dermatologist in Falls Church, VA. She immediately took a biopsy and said she would let me know. Not long after, I got the call; it was melanoma, and it wasn’t just on the surface. I would have to not only get surgery, but also meet with a “tumor board” to discuss treatment options.

That same day, I was working at a conference for my new employer at a health non-profit in Washington, DC. I had just started on April 1, 2019 in my new role and recently started on their health insurance. Less than two months into my new job, I got my diagnosis: stage 1-T2 melanoma.

I met with Drs. Bijelic, Jang and Venna at the Inova Schar Cancer Institute a few days later to go over my diagnosis, surgery, another skin check and, if necessary, a treatment plan. In addition to surgery to remove the tumor on my back, I needed a lymph node removal and biopsy to make sure the melanoma hadn’t spread into my lymphatic system and possibly other organs.

Not long after my initial consultation, I had surgery to remove the pea-sized spot on my back, as well as removal of four lymph nodes underneath my armpits. Around this time I was working with my team at my new job to host an event up in Boston, MA on July 15, 2019. I was cleared to travel to Boston after I had my surgery, but still hadn’t gotten back the pathology of the lymph nodes that were removed by the time I left.

The day of the event, I was taking pictures and meeting with some of the speakers when I got a call from one of the nurses at the cancer center; out of four lymph nodes removed, one had melanoma cells.

What I was hoping wouldn’t happen did happen, which is finding out when I was out of town at an event. Immediately I ran to a hotel across the street to call my husband and my parents.  And, I’m not going to lie, I had myself a good cry in the ladies’ room. And then I fixed my makeup, put sunglasses on and went back outside to keep working. My boss and my amazing coworker showed me immense kindness and empathy that day. I was able to get an earlier flight out of Boston so I could get home to my husband once the event was over.

My new diagnosis was stage 3-A melanoma.

A few days later, I met with my oncologist and ally in my fight, Dr. Sekwon Jang at the Schar Institute. The fact that only one of four lymph nodes had melanoma and the tumor didn’t go deeper into the skin was good news. But there could still be melanoma in my lymphatic system, which could spread to other organs and metastasize. Dr. Jang’s recommendation was for me to start immunotherapy infusions once every four weeks for an entire year, followed by bloodwork to check my metabolic levels once a month and CT scans every three months.

I now had to go to my boss and inform them of the treatment plan and to contact the insurance company about my diagnosis. So many things ran through my mind. What if they fire me, I’ve only been here a few months? What if the health plan doesn’t cover the treatment? What if the treatment affects my ability to still do my job? What if the treatment doesn’t work?

Luckily, the health insurance covered 100% of the treatment, minus copays, most of which could be covered using Flex Spending. And my job? “Whatever you need” I was told by my boss and our head of human resources. “Whatever you need. We have your back in this 100%.” I was able to make arrangements that on the days I had infusions I could work remotely, and if I needed any time off, that I could do so with no questions asked.

On August 1, 2019, exactly four months after I started my job, I had my first infusion of immunotherapy. The CT scan I had a few days prior to my infusion had come back CLEAR – NO SIGN OF METASTASIS ANYWHERE. So, for the next nine months, I continued my treatment with very few issues or side effects. The fatigue was sometimes an issue, but I found that exercise really helped. For the most part, I was still able to do the things I normally do and still work at my job. I did find a few silver linings! My treatment got me out of taking care of the litter pan cleaning and maintenance for our cats, Margo and Milo. I was going to keep my hair and I could still go get pedicures and massages. All in all, nothing I couldn’t handle.

In March of 2020, the COVID-19 pandemic hit which changed things and made me anxious as hell. Immunotherapy impacts your immune system and I am extremely high-risk for COVID-19. I spoke to Dr. Jang, and since I had responded so well to the treatment, we decided to hit “pause” on treatment for a couple of months until the infection rates went down a bit. Luckily, my workplace had transitioned to everyone on staff working remotely full-time for the foreseeable future. Once our governor started re-opening the state in different phases and the infection rates went down, I resumed the routine of bloodwork, CT scans and infusions. Knock on wood, for the remainder of my treatment, all went well; no side effects or difficulties, CTs came back clear and bloodwork was normal.

On October 8, 2020, I went to the infusion center at the Schar Cancer Institute for the last time.  Millicent, who was the nurse who administered my treatment that day, told me that I had to “Ring the Bell” once I was finished to mark my last cancer treatment.  So, once my last infusion was finished, John and I followed Millicent to another room with a bell on the wall, and in front of a bunch of doctors and patients I rang the bell. I was done! Then I went home and took a nap.

I’m still not out of the woods yet. A couple of weeks after my treatment I had a mole removed which turned out to be melanoma. It was “in situ,” meaning it was in the upper layers of the skin, and it was a lot smaller and caught earlier, so I have to be vigilant with regular skin checks. For the next year or so, I still need to get bloodwork, CT scans and check-ins with Dr. Jang.

I’m still very high risk, so I have to be very careful going out since COVID is still spreading. I haven’t seen any of my family or friends for several months, which has been very taxing and stressful at times. But I know that I’ll be on the other side of this and will be able to have lots of in-person celebrations when the time is right. For now, I try to keep my husband and I as safe as possible to limit exposure. As my sister Andrea said, “We isolate now so that we all can celebrate tomorrow.”

I also realize, through all this, that I’m truly, truly, truly lucky in so many ways. Lucky that John saw the spot when he did and urged me to get it looked at. Lucky that Dr. Shahabadi was able to diagnose it in time before it was much worse. Lucky that I have an amazing family who has been with me every step of the way on my journey. Lucky that my friends rallied around me when I needed them the most. Lucky that I had really exceptional health insurance that covered most of my treatment, and that it didn’t affect our financial situation the way a cancer diagnosis can sometimes happen to people these days. Lucky that I am able to work for an organization that takes their employees’ health seriously and afforded me the flexibility to keep my job while getting treatment. Lucky that I have an even more amazing boss and co-workers who were supportive in ways I can’t even begin to thank them for. And I am lucky that the treatment didn’t have serious side effects so that I was still able to do my job that I love.

I know that so many people aren’t as fortunate as I am. It can be difficult to get diagnosis and treatment close to home, be able to take time off of work and/or school to get treatment or have health insurance that will cover the cost of treatment. Getting a cancer diagnosis is bad enough, but having difficulties finding affordable and accessible care, treatment and coverage shouldn’t make it worse. So, I’ve decided to do anything I can to make sure that it doesn’t happen to anyone else by becoming an advocate and sharing my story with the community and policy makers on Capitol Hill.

I’m really lucky indeed. And I cannot thank Dr. Shahabadi, Dr. Jang and the myriad of nurses and staff at the Schar Cancer Institute for the amazing and compassionate care they provided. A mole the size of a pea wreaked total havoc on my life. But I’m still here, and I will keep going.

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