Unknown Primary - mastectomy?

Hi, there ~ I can only add a few random thoughts from my own experience, which is not exactly like yours, but a mast. was also recommended for me based on a suspected "phantom tumor" after the pathology from my lumpectomy showed 2 different types of bc cells in my lymph node,  including some that did not match the cells in the breast tumor they'd removed.  What I did was go to a different facility (UCLA, one of the best in the US), and they figured out a couple of things that my local docs had not -- (1) that the cells were the same; and (2) that I still needed a mast because my original MRI had been blurry and a much better MRI that they did (much larger machine) did find 2 more lesions (although these were a different type of bc, so did not back up the first surgeon's phantom tumor explanation). So my first suggestion is possibly a second opinion to review what's been done to date, to see if they can find anything your present docs haven't. 

My other thought is, since I also had a unilateral Diep, there's no way I'd go through that again for just one side if I knew I needed a mast on the other side and an implant.  IMO, it's way too much surgery and recovery to do it if you can't do both sides or are not able to keep your other breast.  I only had enough tummy tissue to do one side, and while UCLA encouraged that and I'm thrilled with my results, I do worry, what if...

I think I read during my own diagnosis that as many as 3% of cases of bc that present as bc in lymph nodes or elsewhere, the original breast tumors are never found.  However, with several positive nodes, it seems like it should be large enough to find, so that certainly is a frustrating mystery.  But I'm glad they have you on chemo while you continue to research and figure out what to do.  

I'm glad you've found BCO.  Please keep us posted on your situation.    Deanna

Hi Pam,

There was no missing my whopping 6.5 cm tumor, although when I felt it (docs too) we all thought it was smaller.  And I had a clean mamo the previous year too.  I had extra capular extension in my nodes so of course the risk of spread was great, luckily none was found right after surgery (am having some issues now which I'm praying are not mets).  For me it was a no brainer once they were inconclusive about the other side (LONG story there, which I won't get into now) so I said to take both sides.  They ended up finding LCIS on the so called "good" breast.  So I am very glad I made the decision I did.  I know me, and I would have worried forever about it.

Hope all goes well for you,

Sharon

I was diagnsd in Oct 2006 because of a painful node in the axilla, Biopsy showed 3 nodes all cancer. I then had 5 different chemo agents over a standard course from Nov '06 to Sep '07. Primary never found over many  MRIs, sonograms, exams.  For surgery, surgeon said no masectomy needed, oncologist argued that "yes" it was needed.  Had a lumpectomy on a very tiny new cancer in the same side but it was not the cancer than invadede the lymph nodes. After surgery, I had 35 rounds of chemo, all finished at year-end 2007. So far so good, 2.5 years with clean reports! I take tamoxifen for a 5-year period.  Good luck to you!!  It's a scary, tough decision to make.