Double Mastectomy AFTER lumpectomy & Radiation?

Hi, Cake.

So sorry to hear about your recent diagnosis.  None of us wants to be here, but this is a great site for support and feedback from others with BC.  I had bilateral mastectomies 10 days ago.  I was diagnosed with DCIS on the left in 2002 after a routine mammogram, had a lumpectomy, radiation x6 wks, and Tamoxifen x5 yrs, and went 7 years cancer free.  Then in May 2009 after a routine mammogram I was diagnosed with DCIS on the right.  It was a no brainer to opt for bilateral mastectomies this time.  I had immediate TE (tissue expander) reconstruction.  So far so good...I'm feeling remarkably well 10 days postop.  I don't regret the decision I made either time but am relieved to know I've done all I can now to prevent recurrence.  I wish you the best in whatever you decide.  Hugs!

~Janathan

I don't know if this will help with your decision at all, but I fully documented my double mastectomy (with photos of the entire surgery) and they're posted at cancervacation.com.  I'm positive that if I hadn't gone ahead with the surgery I'd have always wondered, too.  I figure if I do everything I can then I won't have to wonder "What if I'd done ___" down the road.

Hi,

You could re-write your story as mine.  I had lumpectomy and rads and had doubts the whole way through the treatment.  The year following completion of rads turned into constant anxiety and sleepless nights about my choice, and I finally I acted on it and had a BLM.  I was definitely going against the grain of what everyone else thought I should do, but deep down inside, I knew that it was the only thing that could give me peace, and it has to the fullest extent.  Even with the risks of past radiation, I'm so glad I did it.  I went from worrying about recurrence every day to having to remind myself that I ever had breast cancer ! Please pm me if you would like to talk or need any specific info. 

I had a lumpectomy and rads in 2007 and then my first mammogram of 2008 found more microcalcifications and I had bilat mast with no recon.  I did not have any problems with the bilat mast.  I have very dense breasts and no one told me that with very dense breasts nothing can really be seen.  The bilat mast found a 1.7 cm tumor (which was benign) but could not be seen. 

cakeisgreat:  I can understand wholeheartedly the anxiety of recurrence and am in the same quandry about PBM.   You have to do what is best for you. We can all share our experiences and the reality  is we are all strong women who have dealt with bc - we can deal with whatever comes our way , be that "watch and wait" or aggressive surgery.  You are doing the best thing you can -- research your options.

A couple questions: Did you have an oncotypeDX test?  That is a test that gives a recurrence risk rate.  Are you going to take tamoxifen (premenopausal) or aromatase inhibitor (post-menopausal) ?  Has your doctor given you a % recurrence rate based on the treatment you have received?  Have you had genetic counseling for BRCA1 & 2 testing?

I had a lumpectomcy/ SNB, chemo, rads, and arimidex - given all that, I was given a 5% recur rate. I was euphoric about  being done and cancer free and confident I did all I needed to do. Then I decided to see a genetic counselor - she recommended I be tested - not because my mom had bc at 55, but because she considered 51 to be "young" for bc.  And I wanted to know for sure, so my son would know --- and  then one week after being done with treatment, I get the news I am BRCA2 positive -- my risk for recurrence or new bc went to 50% -- rocked my world -- euphoria fled like air leaving a popped balloon.   Some say my decision is no-brainer -- get rid of them.  My brain goes both ways --  50% never see cancer again...what to do???  

Since June I have researched and studied my options.  Reconstruction after rads can be done -- but I have to wait 6-12 months for the tissue to recover from rads.  The best option (lowest failure rate) for reconstruction is tissue transfer - TRAM, DIEP, GAP,  breastcenter.com has a good description of these.   Read the reconstruction boards, too.   I see some women, like janathan, have tissue expanders and implants and do fine.  That is dependent on how your tissue/skin has recovered after rads.   Some have tissue transfer on the radiated side and implant on the other.   Some do Lateral Flaps (using back muscles, repositioned to hold implants in place)  There are plenty of options, with good results, if you choose this route.   

Another importatn factoid: PBM decreases recurence risk by 90% -- so some risk still exists.  

For those women who have made the decision and had PBM, they are happy - it was the right decision for them.  For those doing "watchful waiting", they are content with that decision as well.  No matter what we do, sadly, ZERO risk doesn't exist.  So first understanding your recurrence risk and then determining what % risk you can live, will help you decide.   For me, right now, the "what I can live with" part changes every day.   It is almost a blessing I have to wait to decide --  gives me time to settle my brain a bit.  And I want to recover fully from the treatment for the cancer I had, before I decide about the cancer I may never have.... 

Had I known then what I know now...

My cancer came back in the same breast after a lumpectomy, SNB, chemo and radiation.

In 5 days I will have my double mastectomy with T/E.

Good luck to you! 

Ahhh, there is so much to say on this topic, but most of it has been covered by the other posts from all these great ladies. I went 14 years after lumpectomy and rads, and then had new occurance in the same breast. This time there was no fooling around; I had BMX and reconstruction with lat flap and tissue expanders. I knew I'd never trust that so called healthy breast not to go rogue on me, and I'd need yet another surgery. I'm five weeks post op, feeling great, and in the process of having fills in the expanders.I feel like I've entered puberty again.

 I know I made the right decision, but there is a bit of bad news. My surgeon did say there is always a possibility of another recurrance even after BMX. It's always possible that a smidge of breast tissue remains somewhere, hiding from the surgeon. The onc said the same. But the chances are miniscule compared to leaving the whole breast intact.My healthy breast showed no sign of cancer but I'm glad it's history.

Bobbi

Hi there, I am in the same quandary...had IDCIS lumpectomy and rads on my left boob.  5 years tamoxifen and rads and got it again, this time a hidden 1.5 cm found only by an MRI.  Since I had no nodes, no genetics and the oncotype was mid range, BS tells me it would be "too much" to take off a healthy breast.  He said  should lift and reduce to match the other girl.  I was thinking I just want it gone and new barbie boobs.

Now I have some things to think about.  I don't want to do major surgery if it is not indicated.  BS wants me to get an MRI yearly so that if there is every anything  popping up they can get to it before it even becomes something that needs chemo/rads (did you know MRIs can do that, gals? They can).  He does not feel it is indicated.  Neither does my oncologist.  Neither does my PS.  Everyone feels that it would be overkill.  Except me.  I am swinging the other way to monitoring now, as I do have an implant in the new foob and I have to MRI her every two years anyway to check for leaks.  I may do a few monitoring years, then see where I am. 

That's where I am with this...........

I had a lumpectomy in March and really wanted the breast off at that time,but my BS was a huge proponent of breast conserving surgery, and although she would not lead me in my decision, she did keep insisting that my breast would look fine and that removing it was overkill.  I regret not having them removed.  I am large breasted and they are dense, and also triple neg.  I am just finishing up with chemo next week, and then will do 6 wks of rads.  If I am lucky enough to be one of the survivors that does not get the beast back, I am still seriously contemplating having them both removed at some point.  While my cancer breast does look pretty good, my non-cancer breast hangs about two inches lower and makes me totally lopsided.  I am older and really do not care whether I have breasts or not, so I would not do reconstruction - just use the prosthetics.  I think so many things are thrown at us and so many decisions need to be made - all while we are still in shock over the damn diagnose.  If I had it to do all over again, even though it was only done in March, I would do it all differently.  Best of luck to you.

Linda

My Honest Opinion if you are going to have a Bilateral Mastectomy. Why would you do Rads?

There can be side effects from that.  That can show up years later.

If you have a Mastectomy With your Diagnosis.  I dont think any Drs would have you do Rads.

Pam