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Leslie
not trying to open up a Pandora's box, but there is a school of thought that the genes which are turned on (and turned off) in breast cancer are very like the genes turned on and off in the signature of inflammation and wound healing and that the smaller the surgery that is done the better. The thought is that a mastectomy might stir up more of these cytokines and other substances which might actually worsen the situation. Interestingly, when they looked at women who for one reason or the other (fear, lack of access to medical care, etc) had their surgery long after the lump appeared, they found that the tumors recurred with a large spike two years after surgery (not 2 years after the lump was discovered) implying that something about the surgery was responsible for starting the clock ticking and causing the mets to manifest.
This explains the trend to neoadjuvant therapy, whether herceptin plus an AI (trial, I believe) or herceptin plus chemo, in order to allow a smaller surgery to be done and the trend toward the performance of core/needle biopsies.
As Esther says, the current thinking is that mastectomy only prevents local recurrence and not distal metastases and even if you did recur locally a repeat lumpectomy could be performed without (in many papers), as I understand it, significant worsening of prognosis.
(Just throwing things at you): Has anyone discussed radiation therapy to decrease your chance of local recurrence. Also, has anyone discussed a lymph node biopsy at this stage--they do it after neoadjuvant(pre-surgical) chemo to try to see how effective the treatment has been so perhaps it would be a consideration if it would change your treatment--otherwise I have read papers of radiation therapy given to the axilla (armpit) in those where lymph nodes have not been biopsied. I am not recommending anything--just raising questions.
Could you talk any of them into ordering circulating tumor cells test. It is done by Quest's Nichols Lab and called Cell Search and since you were considered Stage IV should be paid by insurance. If you have them, they can be followed with treatment and probably a mastectomy won't really make a difference as it is more likely there are dormant cells in your bone marrow or elsewhere and your problem is not really local.
I have no qualifications to give ANY ADVICE--am just well-read and trying to be helpful.
Where are you located. as a second/third opinion might be helpful
PS has anyone restudied your liver and what have they found?
Hope some of this helps!
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