Recurrence after bilat mastectomy?

myers421 ~ In my humble opinion it's all a crap shoot in the sense that nothing is guaranteed.  Will you be one of the lucky 85% that don't need Tamoxifen, or will you fall in the 15%?  No one knows.  You have to weigh your own personal situation and how comfortable you are with the risks.  Both of not taking Tamoxifen and of potential side effects of Tamoxifen.

Another possibility is taking Tamoxifen for only 2 or 3 years.  Some studies show that taking it for at least 2 years is better than nothing....and it seems to be that the cummulative serious side effects happen after you've been taking it for awhile.  My MO doesnt' agree that there is enough definitive proof to support that however.

Or you could hop on over to the "alternative/natural" boards, or see a naturopath.  There are some natural supplements like DIM that some believe help with recurrence. If you choose not to take Tamoxifen , it might help with peace of mind that you are at least taking "something".

I also like to think...if I do get a recurrence, will I be filled with regret?  Or at peace with my decision?  Only you can answer that for yourself.    Good luck.

Hi Amy, I was 41 when I had a dx very similar to what you have. I too chose to have a BMX, did not have rads or chemo. They did recommend that I take Tamoxifen, but I chose not to for a variety of reasons. I was very much at peace with having the BMX but very unsettled about taking Tamoxifen. Even though I did have a recurrance 12 years later, every doctor I saw told me it would not have made a difference if I would have taken the Tamoxifen for 5 years as they recommended. For me, I know I made the right decision, but each of us has to make the decision that we are comfortable with.

After debating about what to do, I started Tamoxifen yesterday as the SE's from Anastrozole were too uncomfortable. Planning on this being my good luck charm (at least in my mind)

Myers421- I too struggled with whether or not to take Tamoxifen.  I check in occasionally on this thread because recurrence is sometimes on my mind.  Although I am not as concerned as I once was and figure if it happens, I will deal with it, just as I did my primary.  I started taking it with the thought that if SEs were bad, I would simply stop taking it.  The worst SE for me has been about 3-4 hot flashes a day.  But I have them for a couple of months, then they go away for a couple.  Like my periods now.  I'm premenopausal, although at 54 I'm not far away from menopause.  I think I would start experiencing hot flashes soon anyway without Tam.  I have noticed that I have not lost weight after starting to exercise 3 months ago, but I haven't gained either.  A lot of women blame weight gain on Tam, but I think possibly it's due more to menopause than Tam.  I did get a bit sleepy in the afternoons, but exercising has me feeling better than ever.  I initially thought my eyes seemed a bit blurry, but again, I was looking for SEs and age probably plays more of a factor.  I will stop taking it if SEs seem to get worse.  But we are lucky in that we have a choice.

Romy,

YES!!! ME ME ME! I just posted about why double mastectomy was most necessary for me in another thread "Dr. Brawley" thread...

Go read...;) can't believe your doctor is not allowing that or suggesting that especially with your + breast cancer gene status!

If there was every anyone who needs another opinion it would be you Romy. Go for another opinion and another and another until someone listens. Go with your gut because in the end our gut is the only thing we can depend on.

My BS recommend a bmx if I wanted with a DCIS negative BRACA test if I wanted and I did.  GLAD I did they found IDC in the breast they thought was fine!! DO THE BMX.

ALSO.. did you take the tamoxifin? and still have the reoccurance?

If you keep one breast you will have to get recon or wear a foob. I had NO intention of doing either! I'd rather heal from ONE surgery than decide later I wanted the other one off. I, too, had ADHP in the "healthy" breast which is the one they were worried about when they found the cancer in the other one!! I go flat, and love it, but I could also wear protheses IF I wanted to. I LOVE not wearing a bra, ever again!!

Minus 2,

I'm so sorry. ..:(

How did they find the recurrence? Hope someone else can chime in to help here...

Violet

Minus, I am sorry you are joining the recurrence club. My recurrence was in the lymph nodes under my arm, so I didn't have to have the implants out to have my ALND surgery.

Viktoria, sorry you are joining this group too. I didn't know you had a recurrence too from your PM. I had a 1-2% risk of recurrence after my BMX. I had no rads or chemo the first time around.

Hi ladies,

Thankfully so far I've not had a recurrence.. however I learned something that doctors failed to mention. This may seem a little OT but I follow this thread and want to spread the word.  Any breast cancer survivor is at a much higher risk of colon cancer.  Ask your onc. about it.  Some don't mention it, but it's true.  I'm having my first colonoscopy next week.  I didn't worry about it too much, even at my age since my CT and PET scans were clear.  But that's been over 2 years ago.  Back ON Topic, I look at it this way..  if we have a local recurrence we're much luckier than the millions of women who have distal recurrences from this crappy disease.  I'm so sick of losing friends... young women with kids to this disease.  I usually hang out on the triple negative site since it seems to be a different beast. I hate all breast cancer, although 3N is so darn aggressive and sneaky.   I don't believe the stats anymore after staying up with this thread.  Seems a lot of women with DCIS are having local recurrences.  I'm convinced these percentages mean very little sadly.  My love to all of you.    Live your life to the fullest!

Thanks for your input anne.  Kudos to your dear Mom. 

I gave some misinformation I need to qualify so that you're not misinformed like I was. A PET or CT scan doesn't detect colon cancer.  At least not the type we get when looking for mets.  There is a different CT scan specifically for the rectal-colon area that can pick up about 90% of what is seen by colonoscopy.  but if something is found you'd still need a colonoscopy.

Hope this helps someone.  If you would, please wish me well for my first colonoscopy.  I definitely have symptoms that could prove to be colon cancer, although I remind myself it could be so many other things too.  I appreciate all good wishes!  IF you believe in the healing power of God as I do.. prayers for a benign scan (procedure is next Thursday) would be wonderful!  Thank you so very much.

Live Blessed!

Bren- I love your name.  My precious middle granddaughter Brenlyn I refer to as Bren.

I'm not a bit worried about the procedure itself.  I've been the caretaker for many of friends and family who've had the procedure and they all say the same.  In fact, I've never been really worried about the many surgeries I had last year.. or the outcome.. the last being bilateral ovary and tubes due to my BRCA positive status.  I think it's because I feel so worn down right now that it's really getting to me.  Plus the fact that I'm 58 and have never, ever put off something so important and preventable with early detection.  I truly thought I could slide a bit due to a clean CT scan according to one of my doctors.   But blood in your stool is still worrisome, and I have certainly experienced that.  Last year I had 7 surgeries and wanted a break even knowing it's not a bad procedure at all.    I could shoot the doctor who mislead me about my scan. LOL

I'll gratefully take those prayers!  Thank you so much sweet lady!

Minus, I am so sorry that you had to have the ALND surgery, but glad it was not in your chest wall. I hope you heal well with no complications. I am glad the drain is not an issue for you, mine was so painful I was very happy to get it out early when it became clogged. Make sure you rest and keep the arm elevated when you can. (((hugs)))

hello fellow flatsy, I also went breast free, no recon, very happily... no foobies, I wear tops with yolks and gather and nobody even notices I'm breastless.