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

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

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

Wow Alice - what a story to tell! it's a double edged sword, that's for sure - of course I pray that you will live a very long life, albeit living with MF. But as you say, the key word here is "living".

Happy Holidays to you and your family.

all the best
caya

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

Wow a bittersweet day for you Alice but its wonderful you've reached the five year milestone from BC and I know that will have made you strong enough to face this new issue which thankfully has been found so early, still much to celebrate! xx

P.S My friend had NHL and is doing great eight years on too.

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

Wow, Alice, what a deal! I do so agree with you that this group is the bread and butter of support. I can't imagine trying to do this life without "the gang"! Wish you didn't have to deal with this new thing, but so glad that you can do it. Merry Christmas to you and have a very blessed holiday season. Living fully each day really is the job, isn't it?

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

wow - that is a lot to digest
im sorry you are dealing with this now...
I am wondering if it has any relation to previous BC treatment?

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

Well!!! Congratulations and comisserations (?) are in order!! Life (operative word here) sure is full of surprises!!

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

Alice, You can do whatever is required and beat this, I can just sense it from your post. I am sorry to read what you are going through, but you will conquer it. Stay tough. Hugs, Ceesun

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

That is one of the craziest things I have heard - you ARE lucky they diagnosed it. You are dealing very well - so congratulations on your cancerversary, and all the best with this next challenge. Do keep us posted.
Best,

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

Alice, you have been on my mind lately, perhaps this is why. I'm sorry you're experiencing all of this. My mother in law has something similar so I'm going to share your info with her. Please keep us informed and stay strong.

I enjoyed our time together last year in San Antonio. I loved how much we laughed on the boat ride! Hopefully we will meet again for the conference.

Merry Christmas! I'll be praying for you.

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

Well shoot, Alice.

I hate that you are having to "deal" with another health issue--but "DEAL" I know you will.

I join Melissa on good memories of SA. Please know I am keeping you in my thoughts and prayers.

Vibes of healing and strength to you.

Much love,

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

Alice,

I am sorry you have yet another danged cancer-twist to deal with! I have to tip my hat at your positive spin on the whole matter, but I can appreciate how scary your newest diagnosis must have been for you. I hope and pray you are one those who pop into remission and have no further skin lesions! I think Brenda would have declared this a "crap on a crapstick" moment! Texans are tough so I am betting you will manage your MF well.

Surely wishing you the best.

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

Five years can bring us all kinds of news! Congratulations on NED. Any cancer wanting to come back would have to move fast to catch you on your bike rides.

Oh, my! I am gobsmacked!

You explained the new problem so well that I think I understand what you are going through and facing.

Just hope there are no sleazy Sezary cells to be found. Your body has already added insult to injury and it can just stop there!

Yes, most of us would not pay much attention to a very small area of rash unless it itched like crazy or something.

Now that you have digested all the new info, I feel you will carry on with your holiday plans and have a very merry one.

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

Happy New Year! Alice.

Congratulations on the five year mark and NED. Glad you've caught the CTCL early. And thanks for sharing with us the details so everyone can be on the look-out.

There is a Lynch Syndrome that explains/cautions the rise of several cancers (in the family) due to some glitches in the genes. I found the term after my 2nd Brother was diagnosed with colon cancer. I put in 'Non-Hodgkin's Lymphoma' (Mother), breast cancer, brain cancer, colon cancer" in the Yahoo search box just 'for fun' and then (after gleaning several pages of results) was surprised to see that there's a name for it (actually, two names - it was called 'HNPCC - Hereditary Non-polyposes colon cancer' for several years, used interchangeably at one time, and just recently changed back to 'Lynch' again.)

Love your "I HAVE my life, and so much more to be grateful... back to living."

May you be safe and surrounded by those you love.

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

Hi Alice
Congratulations on 5 years NED. Am sorry to hear you're facing another issue but am sure you'll deal with it as before with bc.
May I ask if there is any connection between this new disease and chemotherapy?

Ellie