Recurrence after bilat mastectomy?

I am 36 years old, and had a bi-lat. mastectomy. I took 16 ACT treatments and now taking tamoxifen. I have a small nodule on the scar line of lymph node dissection. I assumed was scar tissue and left it alone. I went to my family M.D. the day after Christmas the sent me for an ultrasound and radiologist done a core needle biopsy.  The results are back that I have recurrent cancer? I am completely confused.  I had clear surgical margins and micro mestases to lymph node. I am completely confused my  onco seems to think it has always been there and been dormant. I am just so confused I just finished treatments 15 months ago.  He has ordered pet scan, and shutting down my ovaries with zoladex next week.  Also my recurrence is in chest muscle,from what biopsy showed. Has this happened to anyone else?

I am having a Pet Scan Tuesday and then treatments will be laid out. As of right now radiation and shutting down ovaries with Zolvadex on Wednesday.

warrior, 12 years after my BMX I had a lump that turned out to be a recurrence/new primary on the scar line under my arm . It turns out that when they do a BMX the BS can never get 100% of the breast tissue. In my case there was still some DCIS in that residual breast tissue under my arm that lay dormant for all that time. In my case no one knows for sure if it was the DCIS that broke out of the duct and became IDC or if it was truly a new primary. In the end the tx was same. I am sorry that this has happened to you.  A recurrence is like a slap in the face no matter when it happens. (((hugs)))

Warrior - I am so sorry to hear that you're having to go through this again. Damn. I have not had a recurrence and have no words of advice or wisdom, I just wanted to send you some ((hugs)) and let you know that I will be thinking about you (along with so many others here). 

Warrior - Sorry you have to go through this.  So you're 1-1/2 years after original surgery?  Mine was found just 2 years after original BMX.  They're just assuming mine is a recurrence - a micromet from the original surgery since all margins & nodes were clear the 1st time - but diagnosis changed from DCIS to IDC so.....  Also new cancer is HER2+ so be sure they check your status on that.

Please keep us updated.

my signature shows the gist of my history.  I was glad to be able to have radiation for the recurrence on my right side.  I got Inflammatory Breast Cancer on my left side---originally non-cancer side.  It was considered a new primary and a VERY unusual case.  It's tough to go through, but you do it.  BC is so sneaky.  It seems anything is possible.  Chasingzoe, I'd call your MO so they know.  Hopefully it's scar tissue.

good deal!  Let us know how it goes.  

I was DX with DCIS in the right breast, my choice was to go BMX,  I didn't want to be going thru this again in the future if I choose mx.  Glad I did, they found Invasive  in the left breast tissue, that was not detected on mammo. 

I had 7mm tumor in my left breast.  Could have gone the lumpectomy route.  After meeting with an oncologist two weeks prior to surgery, I came away feeling like I was going to be another statistic for the AI she was going to put me on because she was so contrite and dismissive about SEs.  Didn't feel like I had time to line up another appointment with another oncologist.  Had a suspicious spot in the right breast that would have to be followed up in six months.  Said to myself "I have to be crazy to keep putting myself through these tests all the time."  Spoke to my surgeon and changed to BMX and have no regrets.  Also, I live flat and it's a wonderful feeling.

A word of advice.  Ask your surgeon about how high you should raise your arm(s) after surgery.  My discharge nurse told me not to raise mine any higher than where my breast were.  Wasn't coherent enough to question that.  Once the anesthesia fully wore off it dawned on me that I couldn't brush my hair and thought the heck with that.  Talked to my surgeon on one of my follow up visits and he actually said "How did she expect you to brush your hair?"  Told him that was my thought as well.  He asked what did I do and told him I started raising my arms a little higher each day until I could raise my arms all the way up.  It did take a little longer on the side where he removed a node.

Many thanks to all for your comments!  Although bilateral is no guarantee, it seems to be the "safest" route for now.  I have two small children and would very much like to be there to see my grandkids.  It is scary to see how many of you had to continue fighting down the road.  Although cancer is not new to me (my dad died of prostate cancer at 52) it is very different to be the patient.  The risks become so real.  My surgery is scheduled for next week.  I'll keep you all posted on how things go.  I was already wondering how I was going to wash my hair, etc.  :-)  So thanks for telling me to ask my surgeon about how high to lift my arms....

I'm praying my SNB comes back negative.  I've delayed a bit with the surgery.  I worry they won't get all the tissue and what will be left behind.  But I suppose I can worry about so many things.  Right now I just have to do what is right and move forward like you all did.  It's nice to know I'm not alone by far! 

Just to add my two cents --- I had a right mastectomy in Feb of 2009 instead of a lumpectomy due to the amount of DCIS they were seeing. I preferred to be "done" rather than continue with radiation and possible re-occurence. Then 6 months later we re-checked a suspicious area on the left - and after a mammo, CT, MRI, Bx and the need for a repeat MRI and re-bx, the tumor board recommended a second mastectomy. I wasn't ready for a bilateral in February just as a prophylactic surgery. But by November, I was ready to be done with all of the testing and questions. It's "nice" to be even and never have another mammo. I'm glad to have been able to avoid rads. I'm thankful to have lowered the re-occurrence as much as possible. It's OK being flat, and the foobs are not a problem for me. That, too, is my choice.

Surgery is a very individual decision and one that only YOU can make, after gathering the information and support from your doctors and family. Some friends or co-workers may offer their opinions, but only YOU can make the final decision. My thoughts and prayers are with you. Hugs!

I can't agree more with considering a BMX. I had one and I do sleep pretty well. It's been almost a year and I know I have a long way to go before I'm officially considered 'cured' even though we can never say for sure-, but I've done everyting now that I can medically and I know with a BMX, the odds are with me. I did not have chemo as I scored zero on Onco DX, so idea was that the harm would be much greater than any value.

But let me bring up an interesting anecdote for a second:

A close friend of my sis had early stage IDC 30 years ago, no lymph nodes far as I know and er+.  She elected to do lumpectomy (partial mastectomy) and rads. She had only 2 suspicious mammos after that, but no actual recurrence. She was in her 30s at the time, and had had 2 kids, so pretty unlucky-but also very lucky in survival and all that time ago when treatment simply wans't as good.

 However, almost 2 years ago, years after  losing alot of weight,  she was diagnosed with another more dangerous abdomincal cancer. It's not related to her BC, far as is known, but is related to Ovarian.  In  her mind she believes had she done a BMX or even an MX, she might not be where she is today. She told me she wished she had done what I did.  I don't really know the risk factor for the rest of our body, but maybe there is something to what she said.?? Not a doc, don't know.

I was just diagnosed with IDC after a bilateral mastectomy with DIEP for DCIS three years ago. No rads or tamoxifen because it was DCIS. My procedure was skin and nipple sparing and that is where my new IDC tumor appeared, under my areola. Grade is 2/3 but don't have biomarkers until Monday and won't have stage till they take out tumor. Doc says nipples and lump have to go but that I just wonder if I shouldn't just take everything off? I'm 39 and have had hysterectomy so hormones aren't coming from there. I know hormones can come from fat too so is it really smart to have reconstructed breasts that are nothing but fat? I can't find any examples of people that have had a mastectomy after a mastectomy...is it even called that? anybody else know one?

Jmanningtx, I'm so sorry that you are going through this.  From what you've described, it would appear that the recurrence or new cancer developed in some of the breast or ductal tissue that was left on your nipple.  Having some microscopic amounts of breast tissue remain after a BMX is normal and unavoidable.  

Breast tissue - and even milk duct tissue - adheres to the skin and can be involved with the skin.  Topic: Can DCIS be involved with skin?    When doing a MX, the doctor tries to scrap away everything he or she can, but some breast tissue will always be left.  Yes, some surgeons may do a better job of scraping away the tissue than others (and this is the reason to use a surgeon and plastic surgeon who is experienced with this type of surgery) but no matter how good the surgeon, some tissue will always remain.  Any surgeon who says otherwise is lying. 

And that is why there is always a small recurrence risk and small new cancer risk even for those who have a BMX. 

The question is whether breast cancer can develop within the fat of a DIEP breast.  I wouldn't think so, unless some breast tissue or ductal tissue was inadvertently misplaced and mixed in with the fat. I would think that's extremely unlikely - although I can think of one situation on this board where I believe this may be what happened.  But this is so rare that it's not something to worry about - I think the bigger question is how you feel about your reconstructed breasts now, and whether you trust them, even knowing that the risk is very low.