Unknown Primary - mastectomy?

pamdo

Hello all...I hope this is the best place to post this.  I've been reading these boards since my diagnosis in October - but this is my first post - and its a long one, thanks for your patience!

I'm looking for some help  - finding people who have similar diagnosis, and deciding if I should be having a mastectomy - or perhaps even a double.

I was diagnosed in October 2009. My doctor found an enlarged lymph node under my right armpit during a heart scan.  I had clean mammos and us a few months earlier.  Redid allscans, including MRI - but could not find primary.  Biopsy showed metastatic adenocarcinoma, likely of breast origin. CTs showed extensive nodal involvement  - throughout my clavicle and chest, including on the left side clavicle.  Surgeon wanted to do mastectomy, but I was orignally reluctant given no primary could be found.  Went to tumour board and agreed to start with total axillary node dissection - found 9 of 20 nodes positive.  Triple negative, lots of extra focal invasion.  But NO PRIMARY found!  Was very frustrating.  Consequently, was staged at 3c.  Also BRCA negative.

Chemo began Jan 2010.  Original plan was 3 FEC, 3 Taxotere.  Side effects caused a change in plans - had 2 FEC, 1 EC and so far have completed 9 of 12 weekly taxol. 

I am told I will need extensive radiation 35 rounds to right breast, chest wall, axilla and clavicle neck area.

What I need help with is deciding on mastectomy.   Surgeon says yes, and perhaps even double, oncologist says totally up to me  .  She says recurrence risk is high - but higher risk of distant mets vs. local recurrence. If I do proceed, I want reconstruction - preferrably DIEP.  PS says I can only do one diep and one implant due to previous abdominal surgeries.  

I really struggle with the thought of additional surgeries....particularly with two different types of reconstruction.  But I also don't think I will have any peace with being followed by mammo and even MRI  -given they didn't find primary.  I haven't found anyone else with a similar diagnosis. Appreciate any thoughts...thanks so much!

  

MsSherryInFL

I have no help as far as the decision on treatment BUT you may be able to have a GAP procedure done.  I had SGAP done in SC because I had a DIEP prev. that did not come out good.  Best wishes!

dlb823

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

jenn3

Having a masectomy is a very personal decision.  I knew immediately that I wanted a double masectomy to lessen the risk of recurrance.  I will have DIEP sometime in the next year. 

It seems that you have a lot of node involvement and I know surgery is hard thing to face in this situation, but if it were me I wouldn't risk it  - I would have the surgery.  However, the decision is what you're comfortable with and what you'll have to live with. You will have to dig deep to find the decision that makes you feel comfortable with no regrets.  Good luck and prayers are with you.

Remember we're all here to help you through this, support your decision(s) and help answer questions you may have.

pupfoster1

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

pamdo

Thank you all for your input. After consulting with my docs this week I've made the decision...for now...to proceed with uni mast this August.  I will finish chemo in two weeks (yay!) after which they will redo all staging, including breast mris.  If we find any evidence of disease in the other breast- i will do bmx.  If not I will proceed with uni, then rads (35).  Then 6 months after rads I can proceed with reconstruction (diep planned).  During that reconstruction, docs say I can change my mind and do the left side and implant reconstruction.  I feel good about my decison for now..but I still have lots of time to change my mind.  Appreciate all your input and your sharing of all your experiences...will keep you posted on my journey. On another note, my 9 year old son made a website about breastcancer. http://www.4thebreastcancersurvivors.webs.com/  please visit!

evieo

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.

hymil

For me, I would definitely want to know the primary first. I had mx but then I had a large palpable breast lump and no problems found anywhere else in me. I asked about possible spread and they did CT scan to chest/abodmen/pelvis. Didn't bother with my brain hahaha. What i went through in surgery has hopefully removed the Ca from my body, insurance policy Rads treatment to chest wall,  so I consider it has been worth it.

Now, to put myself through all that and NOT be able to say, Well at least the cancer is gone, that's another story and I wouldn't be doing that myself. i would be asking a lot more questions before the drastic steps - like if it has already spread, (as you know that it has) then what difference does taking off a breast make? It sure makes you miserable and sore, so does it make you live longer or better? I like the suggestion of a second opinion, and maybe a third!