surgery or no surgery?

I sure don't know the answer to this. You might try asking the folks on ibcsupport.org.  It's a very active, knowlegeable group who have been through just about everything with IBC. I get responses right away when I ask questions.  It seems to me that most of the women with mets, Stage 4, when diagnosed did not have surgery but I could be wrong about that and you've already had chemo. Sorry that the news wasn't better, Kim.  What a roller coaster ride this is and no fun.

Marian

Kim, I struggled with the same decision.  Here is what my doctor told me that finally convinced me to go ahead with a mastectomy, even though I was stage 4.  I had 5 months of chemo, which was intended to kill off as many cancer cells as possible.  The doctor told me there was probably remaining cancer cells that were resistant to the chemo.  If I did not have the mastectomy and the resistant cancer cells were still there in the breast, they would multiply and send out "colonies" to other places.  Then I would have resistant tumors that would be harder to treat with chemo in the future. 

I hope this helps, and you are able to come to a decision that you are happy with.  No one should have to make this choice though!   

Go to ibcsupport.org.  About the third line down after the title is an option to browse the archives or "join the list."  Just click on "join the list" and it will ask for your email.  You'll get a confirmation email saying you're on and you can elect email notif which is what I did.  Now I get daily emails on various topics.  If you want to ask a question, just hit reply to all and your email will open.  Change the subject line to start a new topic (surgery or no surgery?) and write your question in the narrative section.  If you want to respond to one person, just hit "reply."  Hope this helps.

With Stage 111B IBC, I had chemo first, then surgery, then radiation therapy and it worked well for me, thus far. I didn't have bone mets but if I have to go over this again, with bone mets, I would opt for the same structure in treatment. I am sorry that you have to go through what you are ...sometimes I wish I could take away everybody's cancer and make it my own, so that just one person will have it rather than so many...but life does not work like that unfortunately. Know though that my fervent prayers are with you.

Research from the past several years ago have shown that in general decreasing tumor burden improved survival in stage IV breast cancer.  Not sure about whether its equally applicable for IBC.  But this does mean that the doc who said it didn't matter may not be keeping up to date on the literature.

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From

Is there a place for aggressive surgery in stage IV breast cancer?

Conclusions: The authors suggest that traditional thinking about the proper treatment for patients presenting with metastatic breast cancer may need to be revised. Survival was longer when the primary tumor was removed with either a partial or complete mastectomy compared to women who had no surgery or only a biopsy. Patients with free margins did better than those with positive margins. Factors other than resection of the primary tumor that influenced survival in this group with Stage IV breast cancer were the use of systemic therapy, and the number and location of metastatic sites. Even after adjusting for these three above factors, the resection of the primary tumor remained a statistically independent variable influencing survival. 

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Surgery of the Primary Tumor in Metastatic Breast Cancer: Closing the Barn Door After the Horse Has Bolted?

http://jco.ascopubs.org/cgi/content/full/24/18/2694?ck=nck

Traditionally, metastatic breast cancer is considered to beincurable, and the goals of treatment are the prolongation oflife and the palliation or prevention of symptoms. Within thiscontext, it is not surprising that local therapy is not routinelyrecommended for patients presenting with stage IV disease andintact primary tumors. Surgery is reserved for patients whodevelop complications such as bleeding, ulceration, and infectionat the primary tumor site, a type of surgery that historicallyhas been described as "toilette" mastectomy. In this issue ofthe Journal of Clinical Oncology, Rapiti et al¹ present theresults of a retrospective, population-based study of the impactof surgical therapy of the primary tumor on survival outcomesin 300 women with metastatic disease at the time of the initialdiagnosis of breast cancer. The authors observed that womenhaving surgery of the primary tumor had a 50% reduction in breastcancer mortality compared with women who did not undergo surgery,the survival benefit was limited to women with tumor-free marginsof resection, and a significant survival benefit for axillarysurgery was not observed. ^...