mastectomy/stage iv diagnosis

aI am being treated at a large medical center in the midwest. In Nov., '03, I presented with what two physicians thought was inflammatory breast cancer. Symptoms (over more than a month period) included stabbing pain in my right breast, a 3-4" red circle around my nipple, dimpled peau d'orange skin, skin thickening, small lesion near my nipple, welts the size of a finger appearing at times, prominent veins, swelling and feeling of warmth. There was also a palpable mass. A skin biopsy was negative, but the medical team was prepared to make the diagnosis of inflammatory cancer on observation alone. All symptoms then disappeared. Core biopsy of the mass indicated invasive ductal carcinoma, ER/PR positive, HER-2/neu negative, 6 positive lymph nodes (that are not detected on most recent ultrasound). A bone scan later showed metastasis L1, L2, L3 and T7, as well as the vertex of calvarium and right 7th rib. I am being treated with Tamoxifen and Zometa, and have had a good response. I am functioning just fine. I don't have any major pain, other than occasional twinges in my ribs. Now my oncologist wants me to have a mastectomy. He feels that since I am only 50 years old and in otherwise good health,this is an aggressive and wise approach. He also feels it will be better for me pyschologically to not see the tumor growth that is going to eventually occur.(Note:The interdisciplinary team at this hospital could not reach consensus on what should be done in my case.)A surgeon recommended modified radical mastectomy on my right (tumor) side and a total mastectomy, left. What to do?

[CCF-RN,MSN-rf]

Dear Cath04:  The reason to do a mastectomy in advanced disease is to provide some local control of the disease.  If the tumor grows through the skin, it can be very unpleasant and painful.  With respect to bilateral mastectomy, there can be balance issues but this is strictly a personal decision, there is no other medical reason other than comfort and balance.  If you were not doing well, then it might not make sense to put you through surgery but since you are doing so well, it may make good sense to proceed.

[Cath04]

I should add that recent CT scan and bone scan showed no progression of disease.

The surgeon recommends total mastectomy on my left side because I have large breasts; there might be a problem of balance and comfort if a bilateral mastectomy is not done.

[surgeon]

there's the concept of "tumor burden," meaning it's felt that the less tumor there is the better treatments may work, and the better able the body is to mount whatever response it can. In addition, local control of breast cancer is important, because disease on the skin or chest can become very unpleasant. For those reasons, especially since you appear to have a good response it would be my recommendation if you were my patient to go ahead with mastectomy now. Doing the opposite side is less clear-cut, but can make sense when balance is an issue. The decision is one for which there's not an absolute answer, because no one can predict the outcome of either choice for an individual situation.

[Cath04]

Thank you very much for that reassurance. Many people have advised me NOT to have the mastectomy since it cannot improve survival rate in cases of metastatic disease. I was very confused.

You do agree that is also wise to remove the lymph nodes on my right side? The surgeon I consulted said that was a difficult decision, but ultimately she did advise it.

[surgeon]

I don't have a strong opinion regarding the nodes: I think I'd be inclined, if I were going to take them, to do more of a "cherry picking" or limited procedure than to do an aggressive clean-out, because there's less data to suggest there's therapeutic value, and because of risk of arm swelling.

[Cath04]

Thank-you to you both for responding so quickly to my questions.
You have definitely eased my mind about the surgery. I do plan to go forward with it.

[boomer999]

A related discussion, Pros/cons of mastectomy w/Stage IV diagnosis was started.