DCIS again...

TwoTimer

I guess I should change my username from TwoTimer to ThreeTimer! 

I'm 46 and eleven years ago I was diagnosed with Stage III colon cancer.  I went through surgery and chemotherapy and had no recurrence.  I knew of a relationship between colon cancer and breast cancer but of course I was hopeful I wouldn't experience BC but I have. 

Three and half years ago I had microcalcifications on my mammogram and after a few needle biopsies, one area showed DCIS.  I went through genetic testing for BRCA1/2 because of my history and my family history, as did 2 relatives, and all results were negative.  I had a lumpectomy and radiation for the DCIS and it was recommended that I take tamoxifen.  After thinking really hard on it I decided not to take it. Over the few years I've had other areas of microcalcifications but they were fine.  I did have to have another lumpectomy in my other breast, however, for atypia hyperplasia but no additional BC.  I even started fat grafting breast reconstruction for the two lumpectomies and was feeling better about their appearance. 

Last month my mammogram showed two new areas of microcalcifications that were of concern.  So last week on Monday I had needle biopsies of those ares.  Also on that day my cousin lost her battle with BC at 47.  It's been tough.  Then yesterday I found out my biopsy report; DCIS in both areas.  My doctor has recommended BMX at this point.  I'm seeing my pastic surgeon on Friday to go over options for reconstruction.  I sure hate that it's come to this but I guess I'll be glad to be done with mammograms and needle biopsies!!  Seems like a no brainer to go ahead with the BMX but does anyone have any input?  I want to be thorough in my research and in what to ask my breast surgeon and plastic surgeon.  Any support or advice would be so appreciated.

alexandria58

Hi TwoTimer,

Sending a hug over the internet.  You've been through the mill.

My understanding is that you can't do rads again.  It really does sound like the BMX is a no-brainer.  I had it.  It's not fun, but I can say a year out that I am feeling fine and have no regrets.  I can't offer any info on recon - I made the decision against recon.  There is, however, a breast reconstruction topic where you can get a lot of info.

Wishing you all the best.

BLinthedesert

So sorry two-timer ... thinking positive thoughts for you.  

bdavis

Two timer.. I opted for a BMX instead of radiation (had lumpectomy and chemo)... and thought I'd needed to not worry for the next 50 years about recurrance. I have zero regrets.. I had a BMX in New Orleans and used my own fat for reconstruction... Your PS may not mention this type of recon as it is not offered everywhere.. as a metter of fact,very few PS do it well.. I live in NJ and traveled to NOLA, as there were no GREAT PSs in NYC and Philley, and my local PS could only offer Lat flap and implants.

Here I am 11 months later, and went to the beach today in a bikini..  My breasts look and feel like the old ones, and are cancer free, and I don't need to worry about mammos, cysts, fibroids, or cancer again. I could list my many reasons for choosing this path, but the number one reason was peace of mind. And it lowered my risk of recurrance locally down to 2% (of course it is never zero). My cancer had traveled to one node (so I had 6tx of TC chemo), and my systemic risk is still at 14%, so I wanted the best odds possible.

I suggest if you haven't already, check out the picture forum... PM nowheregirl and ask for permission to see it... also check out www.breastcenter.com which is where they do the flap surgeries, so at least you can have a complete picture of recon.

Good luck.

Beesie

Two-timer, I can really identify with your statement when you said "I sure hate that it's come to this".  

I didn't want to have a MX but I had so much DCIS in a small breast that I had no choice. There simply was no other way to remove it all. Despite having had 4 biopsies on my other (left) breast, including one for calcs that was done just after the diagnosis of BC in my right breast (the calcs in my left breast turned out to be benign), when I had a clear left breast MRI and found out that I was BRCA negative, I breathed a sigh of relief and happily agreed to a single mastectomy only.  So I get that a BMX is a hard thing to consider.

But.... I'll be honest and say that if I had two diagnoses of DCIS in one breast and ADH in the other, that's the point where I would reluctantly admit that it was time for the BMX. Having had the single MX, I won't tell you that a MX or BMX is an easy path. My surgery and recovery and reconstruction was a breeze but I live daily with reminders that I had a mastectomy.  I regularly have phantom itching and even after 6 years I still find the lack of feeling to be strange.  I'm lucky that I've regained complete surface (skin) sensation but the simple fact is that the "stuffing" isn't real and therefore there is no inside feeling. Everyone's experience with a MX or BMX, both physically and emotionally, is different. Some women have difficult surgeries and recoveries; others have an easy time. Some women deal with the emotional aspect with no problems; others struggle for a long time. My suggestion is that you read through the reconstruction forum on this board.  That will give you a good idea of both the good and the bad, and it will help you know what to expect if you decide to go down this path.

Good luck to you!  And so sorry that you are dealing with this again. 

TwoTimer

Thank you all for your replies.  It's been very helpful!

Jelson

TwoTimer -

You mention having been tested for BRCA 1/2, have you and your relatives been tested for Lynch Syndrome which has been mentioned several times on BCO as another genetic mutation which is more commonly linked to early colon cancer, but also to BC.

http://www.sciencedaily.com/releases/2012/02/120213185127.htm ? 

Testing for Lynch might provide you even more information upon which to base a decision on what path to take moving forward.

Hugs to you.

Julie E