Ten years ago today, my primary care physician called me and told me I had malignant melanoma that was "at least" Stage III. I'd had a lesion removed and biopsied five days earlier from the back of my arm where the arm meets the shoulder and my doctor didn't seem too concerned about it. When he called, he used a lot of jargon that I didn't understand at the time: Clark's level 4, depth of 2.5mm, and some other terms related to the biopsy report. Then he said something I'll never forget: "It didn't look that ominous." Of course, I had no idea what any of this meant at the time. My doctor apologized to me and said he would get me an appointment with a surgeon as soon as possible. Then after a few seconds of silence he said "Are you ok?"
I could tell from his tone of voice that this was very serious, but I told him I was ok and hung up the phone. I immediately began researching melanoma online and found MPIP - the Melanoma Patients Information Page. I started reading posts form others who were diagnosed with melanoma, which led to reading blogs of others' experiences with surgeries, medications, radiation, and other therapies for melanoma. Two blogs in particular stood out: Heather and Sarah. It was easier to make decisions about what to do next by reading what others had done or not done. It was also a huge amount of information to process, especially when it came to the charts regarding prognosis. The fact that I had a very aggressive melanoma was concerning. I first noticed the lesion in December 2005, but was just a small bump. By April 2006 it was Stage III.
April 17, 2006 was a Monday, and I was scheduled to go to annual training in the Dominican Republic with my National Guard unit. I had to make the decision to stay home and go ahead with surgery in less than two weeks, or schedule surgery for the middle or end of May when I got home. I chose to stay and go to the appointments and get the tests I needed in order to get ready for surgery.
The six weeks following my diagnosis were a blur of surgeries, medications, biopsy reports, and more appointments. I had a PET scan to determine if the melanoma had spread anywhere that was detectable. My first surgery was a wide local excision, which removed a huge chunk of flesh on the back of my arm that is now a foot-long scar that is over an inch wide at its widest point, where the lesion was removed. At the same time, a sentinel node biopsy removed three lymph nodes under my armpit to check for melanoma. My surgeon’s office called me and asked me to come back in to have stitches removed. Unfortunately, one of the lymph nodes was positive for melanoma. Another surgery in my armpit removed 17 more nodes and left a six inch scar. I also got to go home with a JP drain, which is a little bag with a tube stitched into the skin to remove excess fluid. My surgeon called the drain “your little friend” when I went back to see him to get the drain removed ten days later. I told him the drain was not my friend and I was glad to see it go. He also told me that one of the 17 lymph nodes removed was positive for melanoma.
In staging terms, this put me at a T3bN2aM0 - Stage IIIB. This is a tumor (T) between 2.01mm and 4mm (3), with ulceration (b) and two positive lymph nodes (N2) that were micrometastases (microscopic) (a) and not spread to any distant locations (M0) as far as we knew at the time. I was referred to a melanoma specialist at the Ellis Fischel Cancer Center in Columbia, Missouri. The oncologist there told me my five year survival rate was around 55%. He wanted me to receive interferon treatments, which I had researched, and I knew I didn’t want to go that route. He said I could wait and see, but he didn’t recommend that option.
In the first year after diagnosis, I spent a lot of time talking with others on the Melanoma Patients Information Page forum. I read blogs and got support from others who had been through the same thing. Unfortunately, over 10,000 people in the U.S. die from melanoma every year. In 2007, the two women whose blogs I had been reading since April 2006, passed away when their melanoma spread to the brain. I didn’t know Heather and Sarah, but I knew a lot about them through what they were willing to share with the whole world about their experiences with melanoma.
My options at this point: 1) Receive interferon-alfa 2b for 52 weeks, which comes with some pretty nasty side effects or 2) GM-CSF, which is a biological response modifier that boosts the immune system or 3) Wait and see. I’d been reading a lot of posts by people who had done the interferon and it sounded terrifying and not all that helpful. I decided to try GM-CSF, which does not cause serious side effects in many people. I am not one of those people. After feeling like I had the flu for two weeks, I stopped the GM-CSF injections. My last option was wait and see, so that’s what I did. My last surgery for melanoma was on May 24, 2006, and I have remained cancer-free since that day.
A lot of things have happened in the last ten years. I spent the first few years getting x-rays and lab tests regularly to make sure the melanoma hadn’t returned. I’ve had a couple doctors who have said I’m “cured” since it’s been so long, but I try to be vigilant and pay attention to spots and symptoms. Sometimes I worry too much, but just because I’ve been cancer-free for almost 10 years doesn’t mean it can’t come back.
I’ve been very fortunate and I appreciate every day I’ve been given. We all hear stories of people who have had cancer and didn’t survive, but the challenges of being a survivor are stories that you might not hear. The survival rate of stage 3B melanoma at ten years is 43%, and the rate levels off after ten years. However, the things that remain are the fear, worry, and especially the guilt of having survived a very deadly cancer. Survivor’s guilt is probably one of the things I struggle with the most. It’s hard to understand why one person makes it through this ordeal with only scars as a reminder, while another person doesn’t make it through, despite doing everything in their power to fight and to survive.
Looking back, I’m glad I made the choices that I did regarding my treatment. I have scars and nerve damage, but those things serve as a daily reminder that I made it. I look at the survival rate charts and I’m amazed that I’m on the 10-year mark now, instead of at the zero mark, where the future was uncertain. A lot of people complain about getting older, but I breathe a sigh of relief on my birthday and on April 17 every year, because I made it through another year. I am grateful for my last ten years NED (No Evidence of Disease) and I look forward to the next ten years.