5 Year Breast Cancerversary with a side of Non-Hodgkin's Lymphoma

[alicem]

I have been looking forward to this day for, well..., 5 years so it is with mixed emotions that I write this.

Two weeks before Christmas in 2008 I was in Houston undergoing a combined mastectomy/reconstruction surgery that was to be the end of my treatment (my diagnosis had been DCIS, Stage 0). The day after Christmas, my breast surgeon called to give me the pathology report. There was a surprise 2 cm invasive tumor that was found and it was HER2+. He had the results a week earlier but gave me the Christmas gift of time by waiting a few more days.

Being diagnosed with HER2 gave me another gift of sorts - all of the wonderful people I have met through this forum. YOU ARE THE BEST! In fact, if there were an Academy Award given to the best support forum, this one would win hands down. I am so grateful for you and that is why I decided to share my third cancer diagnosis. (I had a basal cell carcinoma removed from my face a few years before my breast cancer.)

GOOD NEWS - BAD NEWS:

Now to the not-so-good news. I was diagnosed last week with Mycosis Fungoides (MF), a Cutaneous t-Cell Lymphoma (CTCL). The good news is it was found very, very early and as of now I am Stage 1A. The bad news is, it is systemic, with no known cure and left untreated will progress. Good news - Stage 1A, IF it does not progress means my life expectancy is the same as someone who does not have MF.

I believe my breast cancer might have saved my life. In April, I had a rash about an inch in diameter on my reconstructed breast that suddenly appeared out of nowhere and after a month had not gone away. I immediately became worried that it was inflammatory breast cancer. After meeting with my oncologist, he recommended a skin biopsy from my dermatologist. Good news - it wasn't IBC, but they couldn't confirm what it was. They were suspicious of MF, but couldn't be sure. The steroid cream I applied caused the rash to disappear. BUT, it came back this summer. I applied the cream and it went away again. I stopped using it around Labor Day, and a third time it came back. I went back to the dermatologist the tuesday before Thanksgiving for another biopsy. This time, it was confirmed as Mycosis Fungoides.

My oncologist ordered a chest x-ray and bloodwork done to look for Sezary cells - which if found mean a more leukemia type of MF and more serious. He doesn't think he will find them, and did this more to rule that out right now. The chest x-ray came back normal.

Everything I read about MF talks about how difficult it is to diagnosis. Sometimes it takes 6 years because it is thought to be a dermatitis. If it would have been on any other part of my body but my breast I wouldn't have thought twice about it. That is why it is often found at a more advanced stage.

For those who would like to know more, here is just one link (believe me, I have been reading them all!) I advise you not to look at images of the advanced stages because it is not a pretty picture. This link is image free: http://www.clfoundation.org/online-l...s-fungoides-mf

One other bit of good news, it can be extremely itchy but since it's on the reconstructed breast I have NO FEELING there!

I am still working out treatment with my dermatologist and oncologist. I will keep you posted. It's made me a bit depressed that I will have to deal with this the rest of my life, but I HAVE my life, and so much more to be grateful. Coming here today and learning that we have lost both Elaine M and Hema gives me a slap in the face to get out of this pity party and back to living.

I wish all of you a Merry Christmas, Happy Kwanzaa, Belated Happy Hannukah, and Happy Holidays. May you all be safe and surrounded by those you love.

~Love, Alice