unknown primary - mastectomy?

pamdo

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've posted in Stage 3 boards too...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!  [Edit] [Delete]

squidwitch42

Pamdo,

We were diagnosed at the same time, but I cannot add to how your case is presenting.  I too had less reconstruction options due to abdominal surgeries and lung sugery on the side of the tumor (had a chest tube from trauma not cancer.)  This left me with the choice of expanders post mastectomy, and I chose to have bi-lateral.  It is a personal choice, and I had people weighing in...and chose a route which I hoped would minimize the chances of recurrance.  I don't have any regrets, as I too had the chemo and radiation to go through. 

I have another six months or so before I get my implants due to the radiation.  My friend recently got hers and she is quite happy.

There is a conference tomorrow? and you can watch on your computer...you can also submit your questions to the experts.  I hope you will continue to share your journey, and I wish you the best.

traci

pamdo

Do you have any regrets with your bilateral?  I just made the decision to have right mast only in August...followed by rads then diep reconstruction after 6 months like you.  But still have chance to change my mind and do left when they go in for reconstruction.  Thanks for the heads up on the conference - I did watch and submitting my question - but didn't get a response.  I enjoyed seeing all of the commentary on the promising research and clinical trials underway though!

Good luck with your implants...I will be watching the boards for your reports...

jo_c

Hi Pamdo,

I have a similar dignosis to you.  I was diagnosed last November with triple negative occult breast cancer after finding an enlarged lymph node.  I have had 3 x FEC and 3 x docetaxel chemotherapy, full axillary clearance and have just finished 15 sessions of radiotherapy.  My breast surgeon and oncologist both agreed that there would be no real reason to have a mastectomy as no primary was ever found.  They said I could have it if I wanted to but they both agreed that radiotherapy to my breast and supraclavical area would be enough.  I'm not sure what I would have done if they were pushing for a mastectomy, I think like you I would have been reluctant.  I hope the rest of your treatment goes well.

Jo

jenn3

Pamdo - I had a bilat in June of 2009, with no regrets. I had a 1.9cm tumor in the breast, a 3cm, 4cm, micro invasion and extra nodle extension in the 2 other nodes. I did 4 DD AC, 12 Taxol 33 radiation treatments (28 w/bolus, 5 with bolus and boosts).  I was staged at IIIA. 

I am currently wearing prosthesis and will more than likely have DIEP sometime next year (I wanted a dr break).  I know the PS said you're only qualified for DIEP on one side, but they can pull the tissue for your thighs and rear.  If you do decide on DIEP, research surgeons.  I may get slammed because there are plenty of wonderful doctors, but Dr. Robert Allen (located in NOLA, SC and NY) created the DIEP, he also works with several other doctors for which I am drawing a complete blank for at the moment.  Then there are the NOLA doctors talked about on the recon threads, Drs Sullivan and Dellacroce. I have just started researching and I myself have had surgery in the abdomen area, but was told if they can't use the belly they will go elsewhere on my body.

The decision to have a bilat is very personal, but I will say I don't regret having it done.  I just didn't want to go through this again and if it helped to reduce the risk I was and am doing it. 

Besides how many people can come home after a long day at work and take off their boobs?  That's what I did today.  Then....because it was hot and I just felt like it I left the boobs off before going to dinner with some family members tonight.   

Good luck with your decision.

Jenn