Hi Joan,
I have been lurking on this website, and wanted to share my experience and research with you. I was diagnosed in February 2007 with inflammatory breast cancer and widespread metastases (many bones, liver, and lots of nodes). I was treated with TCH, and had a great response. My first follow-up PET/CT after three months of treatment showed NED. I had three more months of TCH, and then continued on with Herceptin alone as well as Femara, Zometa, and Zoladex injections. At my oncologist's strong urging, I had a mastectomy and axillary dissection at the end of September 2007. I then had radiation. My last scans in March 2008 still showed NED.
I agonized over the decision of whether to have surgery and researched it quite a bit. There are many studies that show a survival advantage for patients with metastatic breast cancer who have their primary tumor removed. And, according to my oncologist (and my own research), there are no studies to the contrary. Unfortunately, all of the studies are retrospective. This means that there could be a selection bias. For example, the doctors could have selected only the patients they thought would do well to have the surgery. The studies attempted to control for this, but, according to my oncologist, this cannot be completely controlled for. One point that I found encouraging was that surgery without negative margins was not beneficial. If the surgery itself was not helpful, it should not have mattered whether the margins were positive or negative.
Here is a list of some of the studies and the databases they used: (1) Lang, et al, Impact on overall survival of primary tumor extirpation in breast cancer patients who present with stage IV disease, Journal of Clinical Oncology, 2007 ASCO Annual Meeting Proceedings Part I. Vol 25, No. 18S (June 20 Supplement), 2007: 598 (MD. Anderson database 1997-2002); (2) Gnerlich, et. al., Surgical Removal of the Primary Tumor Increase Overall Survival in Patients with Metastatic Breast Cancer: Analysis of the 1988-2003 SEER Data, Annals of Surgical Oncology (published online May 24 2007); (3) Rapiti, et. al, Complete Excision of Primary Breast Tumor Improves Survival of Patients with Metastatic Breast Cancer at Diagnosis, vol. 24 Journal of Clinical Oncology (June 20, 2006) (Geneva Cancer Registry between 1977 and 1996); (4) Khan, et. al., Does aggressive local therapy improve survival in metastatic breast cancer?, Surgery 132:620-627 (2002) (National Cancer Data Base between 1990 and 1993).) The ultimate conclusion of each analysis was that surgery with negative margins significantly improved long term survival. (You could find most of them by searching in Google Scholar.) There have been more since I last researched the issue. Also, there is a presentation on this topic at
www.breastcancerupdate.com. If you click on BCU for surgeons, there is a lecture by someone named Morrow on this topic. I think there is another lecture by her somewhere on the internet that I listened to, but I don't recall where it was.
Another important point to consider, and emphasized by my oncologist, is that even if it does not prolong survival, the surgery could help local control. This means you could avoid needing treatment for problems caused by cancer in your breast.
I believe (but I am not certain) that my doctor said I would be disqualified from having the surgery if I had brain metastases or if my PET/CT before surgery showed a new area of metastases.
I am being treated at UCSF, a major teaching hospital.
Good luck with your decision! I hope I succeed in actually posting this.