melanoma, pt.1
CW: needles, medical procedures
On Thursday June 1st of this year, after swimming, I noticed a small dark spot on my back, near the bottom inside corner of my left shoulder blade. I asked Mel if it was a tick, and she confirmed it was not and that it was strangely attached to my skin. On Monday June 4th, I started calling around the Charlotte area for dermatologist appointments. It was next to impossible to find one with a well-reviewed doctor, who took my insurance, within a few months. I took the first available appointment I could and decided to wait it out.
Over the next three months, the spot grew, rather strangely. It looked like a small mushroom was growing out of my back. There were two instances in which it irritated me, mostly because it was right on my bra line, but generally speaking it was painless, itchless, and just kind of…there. I googled the attributes and it seemed like it might be something called seborrheic keratosis. In fact, only a few of the descriptive searches I did google yielded the suggestion that it might be melanoma. I was worried, but I didn’t know how to strongarm myself into an appointment with a dermatologist when they were all booked out.
On a Thursday at the end of September, after the spot became irritated again, I called my friend’s dermatologist’s office (again) to get an appointment. There was a new doctor on staff and she could see me the following Monday. I was anxious and relieved. I went to the appointment where my new dermatologist did a thorough skin check and inspected the spot on my back. She confirmed that she thought it could be one of three things. First, seborrheic keratosis. Second, an abnormal angioma-type growth. Or, thirdly, melanoma. She immediately biopsied the area and sent it to pathology. Otherwise, my skin was completely clear.
Two days later, on my way home from Costco, my dermatologist called me. It was confirmed melanoma. And, due to the size and rapid growth, she was referring me to Duke, which is the best place in North Carolina for melanoma treatment. I have little memory of getting home. I know I called Mel in hysterics and picked her up from work. I climbed into bed and felt catatonic. Mel called Duke to ask if the referral had gone through, anxious to get my first consult scheduled. I called our families. I sobbed. Marlo came home from school, we had no idea what or how to tell her.
The following Wednesday, I had my first consult with a surgical oncologist, Dr. Paul Mosca, at Duke’s Cancer Center. The entire 5th floor is dedicated to melanoma. When I walked off the elevator, I looked around and was surrounded by people my parents’ age. I checked in and sat in the waiting area. A CNA called me back to check my vitals. He was gay and so sweet. My blood pressure was high (white coat anxiety, but on steroids). “Girl, we are just going to take a break and chat and relax and then we’ll do it again, don’t you worry.” It felt absolutely unreal to have such a wonderful interaction in a medical setting right from the start. Little did I know that all of my medical interactions at Duke would be just as wonderful, all things considered.
Dr. Mosca is a soft-spoken and gentle man, one of the few “LGBTQ-identified or ally” designated staff in the Cancer Center, and I felt incredibly safe. He talked about what we knew — that my mole (or, henceforth, tumor) was melanoma, that it is nodular melanoma, that it was deep which is a concern for metastasis and treatment, and that I was in the right place for care. Before pushing me into the operating room for a resection surgery, he wanted me to have a CT scan from neck to hips to see if there was any spread to my lymph nodes, as this is common with melanoma, and/or my visceral organs. If the scan was clear, then I would proceed to an aggressive resection surgery and sentinel node biopsy, where they would inject my tumor site with a radioactive substance and then, when Dr. Mosca was in the process of doing my surgery, he would use a “small geiger counter” to find the lymph nodes that the melanoma was draining into and remove them for pathology. After that, I would likely have to take part in what’s called “adjuvant therapy”, which are treatments to ensure the cancer was definitively gone.
Twelve days later, I was back at Duke being injected with contrast dye and slowly entering a CT scanner. On the way home, less than an hour later, I received the CT results on MyChart, the digital management system many hospital systems use. The results indicated that all of my visceral organs, from chest to gastrointestinal to reproductive organs, were “unremarkable” with the exception of a few enlarged/abnormal lymph nodes near my tumor site and in my left armpit. Radiologists identify lymph nodes as “abnormal” when they measure larger than 1cm, and this ~half-dozen assortment of lymph nodes were anywhere from 1.2cm to 1.9cm. Not LARGE, but big enough.
I received a call later than afternoon from Dr. Mosca’s physician assistant who explained that, due to these enlarged nodes, Dr. Mosca wanted me to have a fine-needle biopsy of at least one of them so pathology could test them to determine if the melanoma had already spread. Ten days later, I was in the bowels of radiology with a numb armpit and multiple rounds of needle biopsies just between my left armpit and breast. A pathologist came into the room with her microscope setup and checked each collection as it came out of my body until she felt there was a sufficient amount of lymph goo removed. Then they cleaned me up and we headed home.
A few days later, Dr. Mosca called me and said that the pathology results were “suspicious, but inconclusive” for melanoma in my lymph goo, so he wanted to do a full lymph node excisional biopsy on a particular node that the Tumor Board at Duke indicated was “the best one”, in a spot along my shoulder blade between my tumor site and armpit. These are often called “in-transit nodes” as they are lymph nodes that appear in places where they normally don’t hang out, often indicating some suspicious stuff afoot. Two days later, I was face-down on a table in the melanoma clinic at Duke, with a three-inch incision in my back and a very gentle man rooting around for the right node. I laid there talking to the CNA, Hanna, and RN, Julia, who were assisting him with the procedure but mostly chatting with me about dogs, music, and Derry Girls. Dr. Mosca found the lymph node, carefully excised it, plopped it into a jar, stitched me up. Hanna asked me if I wanted to see my lymph node. Of course I did. It was…like a snot ball? Unremarkable.
He called me the following week and explained that the lymph node tested positive for melanoma. This meant my cancer was deemed “unresectable” and “metastatic”. Not only could they not remove it via surgery, but it had officially spread. Not everywhere, but somewhere. I also tested positive for something called a BRAF-mutation, which occurs in ~50% of all melanomas; this opened up an additional treatment option (targeted cancer meds) for me, should my new team deem it necessary. I was being referred to medical oncology where I would speak with a doctor about treatment protocols. Dr. Mosca ordered a brain MRI, which is an important next step as melanoma can spread to the brain, and then set up a lab work appointment and consult with my new oncologist, Dr. Brent Hanks. And then Dr. Mosca told me that he’d be available for any questions I have going forward, even though he was no longer going to be my primary oncologist. I believe him, which is a great feeling to have in the midst of all of this.
A few weeks later, I was at a satellite radiology office for Duke in Cary, in a trailer behind the facility, getting ready for my brain MRI with contrast. I have always felt like I’m someone who experiences claustrophobia, but I also have not had many occasions to test that theory. I can barely sleep with the covers over my head. The MRI tube, though, really solidified it. I had an immediate panic attack after making it about 12-inches into the tube, and the radiologist and tech had to help me calm down so that I could complete the procedure. My eternal quest to not be a burden for anyone/terror around the idea of my cancer spreading more/getting in trouble with my new oncologist was the biggest help in getting me to make it through the procedure, as the radiologist said that appointments might not be available for months. I know now that I can ask for pharmaceutical support going into future scans.
From the brain MRI, we rushed over to Durham for labs and a clinic appointment with my new oncologist, with a few minutes for lunch in between. As I was finishing my last bite of food, I got a call that my oncologist could see me early. We ran upstairs. When I plopped in the seat for vitals, my blood pressure was once again high. I was extremely anxious and still coming down from the panic attack. I have a vague memory of telling myself, inside my own head, “get it together Meaghan, just breathe and bring it down”. And then Hanna, the CNA, took my blood pressure again and it was normal. This feels like a small, insignificant moment in a vast landscape of medical chaos, but it was basically the first moment in months where I felt like I had control over my own body. I was then ushered into the room where I’d meet my new doctor. First, his RN came in to chat over things while we waited for him. She was wearing rainbow glitter Toms.
She said, “part of the reason we called you up early is because we received the results from your brain MRI already. Did you see them in MyChart?” I couldn’t feel my own body, but somehow shook my head no. She said, “well, I’m sure you will be happy to hear that your brain MRI was completely clear.” I burst into deep, hysterical sobs. I haven’t had a clear anything since September 20th. It’s just been one thing after another, really, and I had no sense of when I’d find the end of this particular diagnostic trail. I’m finally there — I have unresectable metastatic melanoma, stage 3d —so treatment begins.
Tomorrow morning, we’re driving up to Durham to begin my first round of immunotherapy. Treatment for melanoma, whether primary or adjuvant, is different than other types of cancer. In many cases, when someone is diagnosed with lymphoma, breast, reproductive cancers, etc. you’ll hear about things like chemotherapy and radiation, and in many cases supplemental medications that help stop or slow down the internal processes that make cancer worse, like hormone-blockers. Melanoma is generally not responsive to chemo, which is why the prognosis for melanoma has been pretty bad for decades. But science has come a long way in the past decade+ and immunotherapy — AKA monoclonal antibodies (mAbs), in most cases — is a way to reprogram a person’s immune system to fight and kill off cancer. The statistics you see online for recurrence and survival are, for the most part, outdated, too.
My particular treatment will begin with a drug called Opdivo/nivolumab, which basically binds to, and blocks the activation of the growth/regenerative process of, my cancer cells. For the first series, I will have infusions every two weeks (in addition to lab work and clinic appointments) for two months. At the beginning of February, I will have a PET scan to assess the effectiveness/progress of the treatments. What we’re hoping for is no progression of the disease, so the affected lymph nodes and possible “intradermal deposits” either stay the same size or shrink. In addition to this, I will see my dermatologist again in January for the first of many years worth of every-three-months appointments for skin checks.
If my nodes grow for any reason, or I have new tumors develop, then I will transition to a combo treatment that has also been proven effective for melanoma, blending Opdivo/nivolumab and Yervoy/ipilimumab. My oncologist said that these two drugs combined are documented to have a “2+2=6” efficacy, which is exactly the kind of aggressive approach needed to stop melanoma. This option was set to the side as my first course of treatment due to my medical history, however. I have chronic idiopathic urticaria (hives) and a family history of autoimmune disorders, and often this combo therapy can trigger some serious reactions in that realm. My oncologist believes that quality of life is as important as aggressive treatment, so we’re starting with nivolumab and hoping for positive results.
Nivolumab does have side effects — though immunotherapy’s side effects are generally less significant than chemotherapy — but without ipilimumab, they tend to be less severe. I can expect to feel them a week or two after treatment begins, so we’ll see. I can expect to feel anything from exhaustion, to flu-like symptoms, to a rash/itching, GI-stuff, headaches, etc. It will also probably render my thyroid useless at some point, too, and maybe mess with my adrenals. I am grateful to have great labs and only have one medication I take regularly, a daily inhaler for my asthma. I hope that my lack of comorbidities, and my youth, means that I am not too knocked-over by treatment. But my oncologist also said that data suggests side effects = efficacy, so I’m ready for whatever this stuff throws at me. While being treated, I will also be avoiding pre-/pro-biotics (kombucha, sauerkraut, yogurt) and eating a high fiber diet, as there is significant data that suggests that the former hurts and the latter helps the drug’s effectiveness.
After my CT scan in October, I joked with my brother about the medical terminology they used — “unremarkable”. In the medical world, this is as good as it gets. As a Leo, I could never abide being unremarkable! But ultimately, this is my goal. NED (no evidence of disease) and unremarkable. I told him that when/if I kick this and can get a tattoo again, I’ll be getting UNREMARKABLE somewhere on my shoulder blade as a commemoration.
This is a rather clinical take at the past four months with my cancer diagnosis, but I hope it helps to answer some questions for interested folks in my life. I hope to write here more about my treatment path, my observations as a cancer patient, my feelings about the public health mis/dis/lack-of-information out there about melanoma (and other skin cancers), the frustrating merger between cosmetic dermatology and clinical dermatology that makes appointments harder to come by, and other thoughts and feelings I have about this new twist in my life’s journey.
Many people have asked me what I need, what they can do, how they can help. I don’t have those answers yet, really, and I might not have them for a while. While I figure that out, all I ask is that you schedule a skin check with your dermatologist, no matter your history. It’s always better to know.