In May 2009, I noticed a mole on my thigh had changed. The surface had become rougher, so I made an appointment with my dermatologist as quickly as possible. They removed and biopsied the mole and sent me away with a weekend of worry about my diagnosis. On June 3rd, I received the news that the mole was in fact melanoma.
I immediately connected with a team of doctors at NYU Langone Health. They identified it as Stage III Melanoma and scheduled an operation to remove it. I powered through that operation, and a following one to remove lymph nodes adjacent to the mole. By August 18th, I was given the all-clear as all my scans showed No Evidence of Disease (NED), and I continued my life at full force.
The changes to my life were small following this intense two-month period of surgeries. Mainly, it consisted of diligently applying sunscreen and quarterly mole checks. With a Stage III diagnosis, there was a 50/50 chance the cancer could come back. After two years, if all went well, I’d be able to go every six months. Aside from sun protection and appointments, I continued to work hard as an architect while enjoying all New York City can offer with the support from my family, extra-mums and great friends.
By Fall 2013, I had been cancer-free for four years and my fear of it returning had diminished greatly. When it came time for my second scan of the year, I was less nervous than I had ever been. However, the scan showed something in my lung. A specialist reviewed it and recommended a biopsy. I spent New Year’s Eve 2013 having a biopsy of my lung. I started 2014 with the anticipation of possible bad news.
The news came January 3rd, 2014; I had a tumor in my lung and was now a Stage IV Melanoma patient. This was the start of five-year pinball game of tumors in my liver, brain, liver again, brain again and again, stomach, breast, lung again and adrenal gland. The only way through this was surgeries, different medications and immunotherapies—all with their own set of side effects. I was able to reduce my cancer, and the few tumors I still have are stable and no new tumors have come up since September 2018. However, I’m still waiting to hear the magic words “No Evidence of Disease”.
Generally, I don’t speak a lot about my disease and have kept my journey private; but meeting other patients and caregivers has allowed me to look at my situation differently. I have been lucky in the sense that I have always received excellent care, all my surgeries have gone extremely well (even the scary brain surgeries), and I have been able to work full-time throughout my cancer journey. This is proof of my own tenacity, courage and optimism, but more importantly the support of my medical team, workplace, amazing family, extra-mums and friends. Knowing that I have been so lucky has helped me expand my focus beyond my own story to a bigger cause.
In January 2015, I joined the Melanoma Research Foundation (MRF) to connect with other melanoma patients and be an advocate for melanoma research and education. Being part of the MRF has been rewarding on many levels. I have made new friends who are melanoma warriors and have become an advocate for education, awareness and prevention. Each year, I travel to D.C. for the MRF’s Hill Day where we approach Senators and Representatives to speak about melanoma as an advocate for sun protection use, tanning bed legislation, among other things. Being a part of the MRF in this way has taught me to value my voice and my story as a tool that can help save lives.
I often get asked how I’ve done it all since my first diagnosis. Early on in my Stage IV journey, my oncologist, Anna Pavlick, sat me down after a rough run with my medications which I had—per usual—tried to power through. We had a conversation about the need to check in and let my doctors know about my conditions and side effects rather than just take my medications, regardless of how bad I felt.
Dr. Pavlicks message to me was this:
“It is my job to take care of and manage your cancer; your job is to live your life to the fullest.”
This changed my attitude about how to cope and live with an aggressive cancer. It has allowed me to trust in my medical team, to not worry all the time about my treatments, and to continue living my life according to my own rules and abilities. I may have cancer for the rest of my life. I can’t ignore the impact it will have on me and my body, but I can learn how to manage it and maintain life. Accept that I am not running a sprint but a marathon. I have learned to take care of myself. To eat well, do yoga, stay in bed all day Sundays if I need it, travel, read a book and spend time with the people I love. Always choose to stay positive, always live in the moment, be brave and be here.
We are glad you are here, Susanne! Missy and Wayne
This is Brave: A Forever Home for the Warriors We Love | The Coolibar Sun Protection Blog
[…] remembering two extremely courageous warriors that we lost in 2020–Susanne Milne and Eric Martin. Both fought incredible battles with Stage IV Melanoma, and they did it with hope, […]