Type of Sarcoma: Malignant Peripheral Nerve Sheath Tumors
Date of Diagnosis: 2015
Location: back
It was the week before my husband and I celebrated our first year of marriage. It started off as a regular day, but now, January 6th, 2015, is a day I will never forget. I was at work when my doctor called to tell me my tumor was malignant. I had a rare form of cancer. What? I was 24 years old and perfectly healthy. I didn’t have any symptoms, besides a small, hard bump underneath my skin, about an inch away from my spine.
When I first noticed it, a doctor told me it was just a benign lipoma, or fatty tissue. She assured me it was nothing to worry about. So I didn’t. I forgot all about it. Until in 2014, I noticed it again and it was still small, but felt about twice the size. I decided to see another doctor, who told me the same thing, that it was a benign lipoma. She assured me she’d seen hundreds of these and there was no need to remove it. I can’t explain it, but I just knew they were wrong. So I saw a third doctor, who also told me I had a benign lipoma and there was no need to remove it. I insisted she did anyway. She didn’t let me schedule the surgical appointment that day. She told me she wanted me to go home and really think about it for a few days. She said I should consider if I really want to go through the pain and discomfort over something that she believed was not harmful. I am so glad that I learned to become my own advocate and fought for my own health. I know my own body better than any doctor and I knew something was wrong.
Even when she removed the tumor, she remarked that it was a lipoma. Two weeks later, I learned it was not a lipoma -they didn’t know what it is was. Upon being reviewed at another clinic, I learned I had sarcoma cancer, a rare form of cancer. And even crazier than that, a rare form of a rare cancer, in a rare place. About 60% of soft tissue sarcomas begin in an arm or leg, but my tumor was in my back. I was glad this meant amputation was not an option, but worried because the tumor was so close to my organs.
Finding out I had cancer was absolutely terrifying. Upon receiving the phone call, the first thing I did was google it. I spent SO much time googling over the next few months. What I read was devastating and heartbreaking. I felt like my diagnosis was my death sentence. After seeing the five-year survival rates, I literally felt like I was never going to see my thirties.
After the pathologist at Mayo Clinic in Rochester retested the tissue, I was diagnosed with a high grade malignant peripheral nerve sheath tumor. MPNSTs comprise approximately 5-10% of all soft tissue sarcomas. Up to 50% of MPNSTs occur in patients with a genetic condition called neurofibromatosis, or NF1. I, nor anyone in my family has NF1.
I had 25 sessions of radiation at the Mayo Clinic. Once a day, Monday through Friday. The clinic was 90 minutes away. I was upset that I had to miss so much work, and I had to be away from my loved ones. I stayed at the American Cancer Hope Lodge, which turned out to be a major blessing. It was very comforting to be surrounded by other cancer warriors, even though the other patients were much older. I tried to make the experience as positive as possible. I went for walks and took photos. I went to the art museum. I went to dog therapy. I made crafts. I made friends. I even went out drinking with people from the Hope Lodge. And I taught them how to fit inside a dryer.
A month after I completed radiation, I had a wide local excision on the right side of my back. After spending two nights in the hospital, I went home with a wound V.A.C. and a not-so-cute drain. The incision was about eight inches long, so I spent several weeks recovering. The pathology showed no residual tumor, so while recovery was difficult and painful, I was very, very happy to be cancer-free.
I was really, really lucky in a lot of ways and I absolutely know it. I was lucky to have awesome support. I was lucky that in all the time that I was misdiagnosed, the cancer never spread. I was lucky there was a room available for me at the Hope Lodge for the duration of my radiation treatment. I was lucky that I still felt healthy enough to drive home to Eden Prairie each weekend and see my husband. I am lucky that I have awesome doctors. I am lucky because they truly believe my tumor will not return, and I believe them. Now I really understand what it means to count your blessings. Even during dark times, there are blessings. I became closer to several people in my life because of this experience. I also met new people I never would have met otherwise. And now I am part of a wonderful community of other cancer survivors. Having the support of Rein in Sarcoma is amazing.
This experience has opened my eyes in a lot of ways. When I would wait for my appointments, I noticed I was almost always the youngest, happiest, and healthiest looking person there. What I went through was difficult, but it was only a small fraction of what thousands of others go through. I now treasure life in a way I really didn’t before. I’m more grateful, more passionate, and more loving. I try to make every moment count, because I know that it only takes a moment for everything to change.
