Monday, October 31, 2011

What We Don't Like To Talk About

Since it is Halloween, I thought I would discuss a scary topic...Recurrence.

Most people are under the impression that when you are diagnosed with melanoma, a doctor will "cut" the melanoma out, and "you will be fine." I have been told that over and over again. Here's the thing: That is not always true. Even if you catch melanoma in the early stages, there is a slight chance that it will come back. When melanoma returns, it is called a Recurrence.

Melanoma warriors hate the idea of a recurrence. Obviously, right? I know what you are thinking. The likelihood of melanoma returning after you "beat" it is slim. Wrong! According to MD Anderson Cancer Center, "Melanoma patients have a high risk of developing new melanomas. Some also are at risk of a recurrence of the original melanoma in nearby skin or in other parts of the body."

Since I am stage III, I am going to discuss the likelihood of me having a recurrence. While trying to find reliable sources to find statistics since I do not know the actual numbers (I try to ignore these scary numbers) I found this depressing statement. On the American Cancer Society's page discussing melanoma, it discusses using adjuvant therapy with interferon to help "fight off recurrence longer."

OK...maybe I am being fussy, but I absolutely hate the way that they have worded the above statement. I am all about positive thinking...I guess this is why I do not look at these sites, huh?

Anyway, proof that recurrence is likely is in their use of the word "longer." If recurrence was not popular, I believe they would have simply said, "...using adjuvant therapy with interferon to help fight off recurrence." Maybe I am getting too upset about their use of the word "longer." Maybe....

According to the Melanoma Research Foundation, the risk of recurrence depends on a few things:
"thickness of the primary tumor, with thicker tumors carrying greater risk than thin tumors, the presence of ulceration in the primary tumor and the presence of satellite metastases surrounding the primary tumor. The probability that melanoma will recur after appropriate treatment is characterized as low- intermediate-risk, or high-risk.
  • Low-risk: less than 20% risk of recurrence
  • Intermediate-risk: 20-50% risk of recurrence
  • High-risk: greater than 50% risk of recurrence. High-risk melanoma has a high probability of having already spread to local or distant sites at the time of treatment." (article here.)
My doctors have told me that it is likely that I will have a recurrence in the next two years OR never again. No one knows. I could go 50 years and then find another funky spot...or I could find a new one on Wednesday....or melanoma could be found in my organs. Melanoma tends to love lungs, livers, and brains. Scary enough for you?

If you would like to view other scary statistics, click here. My 5-year Relative Survival (%) is 61.7. Improvement! When I first started viewing the statistics, before my doctors warned me against looking at them, my 5-year survival rate was somewhere in the 50% range.

Next time you hear of someone having melanoma, please be sensitive. It is not "just" skin cancer. It is scary. It is a guessing game for even the medical world. It is my version of The Wicked Witch...How dare melanoma try to take my happiness!

My red slippers are on & I am ready to fight.


Kate said...

Great post. I have also heard many people say melanoma is "just skin cancer" and that you're fine once it's removed. I am sure this must hurt to hear when you are actually gallantly fighting melanoma! Not only is it ignorant, but it's insensitive. To go along with your Wizard of Oz metaphor, I guess the important thing to remember is that Dorothy eventually recognizes she is empowered and has everything she needs within- just like you. Keep fighting and keep posting, we'll keep reading.

Kayla said...

I am a Stage 3 survivor and I worry EVERY single day of my life about it coming back. I did 11 months of Interferon and currently in remission. That doesn't put me at ease though... My onco gives me a chest x-ray at every visit and a CT scan every 6 months now.

<3 to you.

RBS said...

These stats worry me too. My primary was in 1995 and after 10 years of being checked closely by a dermatologist i was declared "healed!" I found a lump in my groin in May of this year (2011) and 3 weeks later had a biopsy that confirmed it was stage 3 melanoma. 16 years later, i hadn't given "mel" a 2nd thought in 6 years. I am starting interferon next Monday.

but here's the hopeful part. I also have prostate cancer, have had it since 2005. had surgery , it came back, had radiation, it came back. then about 2 years ago i started taking mega doses of Pomex - a pomegranate extract, 2000 units a day of vit D, B12. when my melanoma recurrence was discovered i started taking mega doses of curcumin too. now here's the interesting part. my PSA scores are trending downward in a big way and have for 6 months, my uro cannot explain it, has not seen it before and he's experienced. he said two weeks ago "keep doing whatever you're doing" there's something to this antioxidant stuff. that and good self care, good docs and a cowboy or cowgirl attitude. who knows the Mayans might be right and all this stuff becomes irrelevant in 2012. I've had more than a few cancer docs tell me (in regard to both cancers) it's about getting time, there's new treatments being pursued all the time and science is growing exponentially. every year matters. oh and that "it's just skin cancer" crap? i offer to trade places .

and I love the shoes. I'm posting your Dorothy affirmation on my bathroom mirror for the next month.


Unknown said...

Hi my name is Krystal I was diagnosed with stage 2 about 2 weeks ago and had it removed and I can't get the thought out of my mind of did it spread or not I don't have insurance so it's hard for me to get the sln test to be sure does any one have any suggestions on how to feel better it and any good survival stories of someone with this