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    • #16556
      Bailey Vincent
      Keymaster

      Yesterday I wrote about the high risk of skin cancer to those with CF (especially those who are post-transplant), even though I know that SO many people outside of the cystic-universe don’t know about this likelihood. Many seem to think it is just a “lung disease” and aren’t aware of the many other risks, dangers and co-morbidities.

      Even so, I had the unfortunate tragedy of watching a friend pass from melanoma about a year after transplant (a few years ago). She was one of the most courageous beautiful people you could witness… and sometimes I think she was too good for all of us on this earth. I would never have been able to survive as she did, while she did, and I can’t imagine it (even now looking back).

      Another CF friend just had facial surgery for melanoma but is luckily alive and well, though I know the scars were bothersome at first.

      I wish I could make more people aware of the risk to those of us on certain medications and antibiotics.

      For those who aren’t a female in America and aren’t aware of the pressure out there to be “tan” to varying degrees, the following phrase is an example of what is sometimes said amongst young women: “If you can’t tone it… Tan it.” Meaning: ‘If you can’t lose body fat to insane levels that aren’t in keeping with how our bodies are biologically designed, then get a tan.’

      Today isn’t so much a question as a rallying cry:

      What is something you can do today to spread the word about skin cancer risk and the need for adequate protection?

      And, better yet: Do you have any of your own skin cancer stories or connections to share? We are here, listening.

    • #16558
      Paul met Debbie
      Participant

      I am surprised reading this. Could you mention your sources, Bailey?

      I have searched the internet for the correlation between cystic fibrosis and cancer.
      Indeed there are several large and recent studies that found an increased risk for gastro intestinal cancers in cf patients. This mainly involved cancers of the small bowel, colon, biliary system and pancreas. In cf patients that had a lung transplantation, the risks of getting these cancers were even higher than in patients who were not transplanted, no doubt due to medication that suppressed the immune system.

      Some studies also found an increased risk for testicular cancer and lymphoid leukemia.

      But nowhere I could find evidence for an increased risk of skin cancer in cf patients, as you suggest. On the contrary, some studies found a decreased risk of malignant melanoma. The suggestion was even made that somehow, cf genes might protect against melanoma, although this was not researched further.

      I am very sorry to hear that you witnessed two dear friends with cf suffer from melanoma, but this of course does not in itself support your general question and statement. Could you elaborate on this, and also on the specific antibiotics and medication that you mention?

      PS
      Of course I support your cry to warn against unhealthy habits that result from a sun-tan obsession. We should be very careful to limit our unprotected exposure to the sun. On the other hand, we need UV light exposure for some vital vitamins that form in our skin, and for our mental health as well.
      So moderation is, as always, the way to go.

    • #17737
      Lynn
      Participant

      I have this special relationship with my dermatologist. I see her every few months – she comes at me with apparently some sort of cryogenic device and hurts me all over!

      Seriously though, thinking that malabsorption commonly seen in CF could very well be a predictor for skin issues and even skin cancer led me here. I too am surprised on the lack of information. I mean the argument is very logical.

      I am 58 and very light skinned and have precancerous spots removed every couple of months and was correlating this with CF.

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