Don’t Get Pushed Into Cancer Genetic Testing Because of Psoriasis

This summer, my mom received a rare breast cancer diagnosis. Everything started to fly by at a rapid pace. The blur started the minute she went in for imaging, to the radiologist walking in to “chat,” to her calling me with the news.

When genetic testing became an option

After hanging up with her, I reached out to my network. They replied with recommendations for the next steps. One of those steps involved genetic testing. So, I called my women’s health office and asked about options.

A few screening questions later, I found myself answering, “Psoriasis, psoriatic arthritis, and Crohn's disease, and on a biologic.” She came back on the line and said, “Someone will call you back shortly.”

I would love to say we have a perfect healthcare system and everything works in the manner in which it should. But we don’t, and it does not.

How psoriasis became a precursor for genetic testing

She wasn’t lying. A nurse did, in fact, call me back shortly. After apologizing for my mom’s bad news, she said we would have to go through a series of screening questions. The usual suspects were asked, like family history. This is pretty horrid to visit as I have cancer on both sides of my family.

Next, she asked about personal history. I found myself repeating what I said an hour prior, “I am on a biologic for psoriasis, psoriatic arthritis, and Crohn’s disease.” She then asked if I had cancer before. This is when it started to feel very real. “I have had pre-cancerous growths removed.”

She said they were going to squeeze me in on Monday, as they didn’t want to waste time.

Learn the genetic testing options

Things felt like they were moving fast forward and slow motion all at the same time. At the appointment, I was once again asked the same questions. It starts to feel mechanical. You may be wondering, “Hey lady, what’s this got to do with psoriasis?” A lot, actually.

Being on biologics for psoriasis and other immune-mediated diseases can leave you predisposed to developing cancer, aside from family history.

Come Monday, the session was run by a nurse practitioner in the office who loves genetics. She did some extra training on genetics and risk for performing cancer screening counseling, but she is not a genetic counselor. I didn’t know there was a difference. There is most definitely a difference.

Letting emotion get the best of me

At the end of the appointment, she felt I met the criteria to qualify for genetic cancer screening. Psoriasis, psoriatic arthritis, and Crohn’s things were like the icing, sprinkles, and cherries on the cake. Explanations of whether my biologic treatment put me at a higher risk for cancer or immune-mediated diseases or all of the above were very foggy.

They gave me the option of doing the blood draw after the appointment, or I could hold off until my mom was seen at the cancer center. After that, they informed me that insurance may not pay for the test despite meeting risk criteria.

They sold me with, “the sooner you take the test, the sooner the results will come back.” Running on emotion, I agreed to do the test.

When genetic testing goes sour

A week later, I was sitting at my mother’s genetic counseling session. The credentialed genetics counselor reviewed data and information. The genetics counselor reviewed my mom's form of cancer and the potential gene mutations they want to look for. She also explained if a mutation was found, they would know what the percentages of those risks would be.

She reviewed surgical recommendations associated with certain mutations. We learned a lot of the information provided at my personal appointment was not up-to-date. Then, we learned that my testing could get done at the cancer center for free. And that I would only need to do it if my mother had results showing genetic mutations.

I walked out of there a little miffed. It’s not my counselor’s fault that she doesn’t have the most up-to-date data, but it is my fault for running with the fear. A week later, my results arrived. My insurance provider also sent a letter stating that they won't cover the test because it’s considered experimental. I went from a little miffed to a lot miffed.

Advice for genetic testing

Thankfully, my results showed I didn’t have genetic mutations that put you at a higher risk for cancer; psoriasis, psoriatic arthritis, Crohn’s disease and all.

My advice for facing a family cancer scare is to take a deep breath and wait for the oncology center’s genetic counseling session with a professional. Only after that session should you make your next move.

Should an immediate family member receive a cancer diagnosis, take a step back and breathe. Next, speak with your family member and their oncology team about familial risks. You don't need to feel bullied or pushed into cancer genetic screening because you have psoriasis or another chronic illness. What you and your family members need are facts and an informed professional to help guide you through the next steps.