Some Realities of Having Dermatofibrosarcoma Protuberans

I was diagnosed with dermatofibrosarcoma protuberans (DFSP), a rare form of skin cancer, a few months ago, and I had 2 surgical resections of the visible tumor on my right lower abdomen. There are so many things that I discovered about becoming a cancer patient that I never would have considered until I was actually put into this situation.

The unanticipated realities of my dermatofibrosarcoma protuberans (DFSP) diagnosis

Here are a few of the not-so-physical realities of having skin cancer.

You will wonder what you did wrong to cause yourself to have cancer

Although the type of skin cancer that I have (DFSP) is not prevented by wearing sunscreen and avoiding the sun, I still wonder if maybe I could have prevented it somehow. The self-inflicted blame and guilt that comes with a cancer diagnosis is something that I cannot say will go away, but I’m hopeful it will become less and less as time goes on.

After surgery, you will need more time off from work than you think.

At the first wide excision surgery, my medical team told me to expect to be healed within a few days. That was NOT the case! I went back to work at my job as a physician assistant way too soon, and I was in so much pain and was so weak. The pain didn’t truly go away for an entire month. After my second resection a few weeks later, my oncologist approved me for a longer leave of absence, and thankfully my job has been very accommodating.

Your spouse and children will see you at your weakest, and you have to learn to accept help.

My husband and daughters, ages 4 and 6, think of me as the smartest, strongest, and most hard-working woman they know. I am usually the person in the house who wakes up the earliest and goes to sleep the latest, and I never sit still. While healing from surgery, my family has experienced me as weak, hurt, in pain, and they have seen me cry more times than I would like. However, I have learned that it is ok to ask for help, and it is necessary for them to see me be vulnerable.

Treatment for cancer is VERY expensive!

I have had to pay a $100 copay at every dermatology, surgical dermatology, and oncology office visit, and I have had to pay for pain medications after surgery. I have also paid thousands of dollars so far for office visits that my insurance didn’t cover as well as pathology and actual surgical procedures. It is unfortunate that being diagnosed with a chronic disease like dermatofibrosarcoma protuberans (DFSP) costs so much!

Even though you are “cancer-free”, you will constantly worry about recurrence.

I was told that the pathology report shows no more cancerous cells after my most recent wide excision/resection, however, my anxiety will not allow me to actually believe it. I always worry that a year, 5 years, 10 years from now, I will be told that I have cancer again, whether it is a recurrence of dermatofibrosarcoma protuberans (DFSP), or a totally different type of cancer.

I realize that worrying about it causes me to go through the trauma over and over again, so I have to let it go and live in the cancer-free moment while enjoying life.

What are some of the unanticipated realities of your skin cancer diagnosis