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Woman trapped inside a folded over tube of topical chemotherapy cream

A Not-Just-Skin-Cancer Story

A story from Facebook community member, Carol:

I am a 66 yr old blue eyed blond of Scandinavian descent who grew up in the SO CA sun in the days before sunscreen or awareness of the dangers of sunburns and tans. I also used tanning beds for a number of years in my 40s. May 1st of 2017 I began a two week regimen of Efudex on my entire face, minus lips and eyes, because I had more pre-cancers than my dermatologist wanted to freeze/burn.

Losing sleep

I had had countless places burned on my face alone in the previous 13 years so now it was time for the chemo cream. I had a good idea what to expect because I had to do both arms, from shoulder to tops of my hands, the year before. I thought that was pretty unbearable, until I did my face. It was so painful I had to stop at day ten and the dr prescribed a cream for the pain.

Carol after chemo cream

I’ve showed this picture to a lot of people who at first refused to believe this was even me. The chemo cream kills precancerous tissue on the surface and what’s beneath the surface as well. Every pink or red place is a burn that blistered up high then slowly dried and pulled then cracked and eventually peeled off. Not only was there the constant and increasing pain but I couldn’t sleep until I was exhausted enough to sleep thru the pain. I lost many nights sleep. I didn’t leave the house or see anyone but my husband and daughter and teen granddaughters for three weeks.

I’ve had more basal cell carcinomas than I can recall and I’m just now healed over from my 8-9th squamous cell carcinoma, four of which were on my legs. When I went for my 6 mo checkup this spring I asked my dr if she was going to have me do the chemo cream on my legs and she said no, because it’s not proven to be as affective on the legs as other areas. She did, however, want me to use it on my chest because of the places she’s frozen more than once. I decide to wait on that until fall when it’s not as warm and easier to stay inside huddled into a ball and staying awake most of the night in pain.

Sick enough?

Very seriously I have gotten the “skin cancer isn’t real cancer” attitude so many times I’ve wanted to shake someone till they rattled. Two of my girlfriends missed me so much they brought lunch over and offered to not do their hair or wear makeup to make me feel better.

I don’t know how it feels to have chemo infusions but I know how sick the cream made me feel, and how blisters in the folds of my eye lids and the corners of my eyes and mouth felt when I kept the cream well away from those areas and how I felt when my hair thinned out enough that I noticed. Cancer is cancer. It’s a sad thing when you just aren’t quite sick enough for some people to accept that something serious is going on. Well, until it touches them.


  • SusanByShore
    1 year ago

    As a 60 year old woman, who lost both parents to malignant melanoma with Atypical Nevus Syndrome & a history of multiple BCC, SCC, I understand completely. I just had my 3 month check with 9 biopsies (5 positive) & started Efudex therapy on my face & chest several days ago.
    Living with skin cancer changes your lifestyle. Most can’t relate.
    In June, I was told I had ovarian cancer. Interestingly, people were incredibly much more concerned & sympathetic. After an entire summer of appointments, testing scans and finally surgery, the tumors were benign. A relief there but never get the same relief with skin cancer.
    I use the idea it’s living with a ticking time bomb. You never quite know when/where the next will occur; or how bad it will be.
    Thanks for sharing your story.

  • Nina M moderator author
    1 year ago

    Dear @SusanByShore, thank you for sharing yours as well! I am glad the tumors were benign, and disappointed, though not surprised, that you don’t receive the same concern for your battle with skin cancers. I can imagine the fear would be even worse having seen what your parents went through. I hope you’ll find our community helpful in connecting with the stories of others who “get it” a bit more. This is a forum we just started for those dealing with topical chemo and Efudex: Please keep in touch as you continue this tough treatment. Thinking of you~
    – Nina, Team

  • deedee123
    1 year ago

    Oh how horrible. I wish you the very best and had no idea how awful the treatments could make you feel. Praying that you don’t have to continue with this horrific treatment and pain.

  • Eileen.B moderator
    1 year ago

    Your kindness and support for Carol is appreciated, @deedee123. You’re right the treatments can be awful; it means a lot knowing people care. Thank you! -Eileen, Team

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