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Debbie L. · 07-05-2009, 02:38 PM

Hi Joan,

You ask excellent questions. But there is not one best answer to the question, which is why you're getting conflicting advice from experts. You could get another opinion, if you are truly not sure what feels right to you. You are in a fairly unusual situation and so you're not going to find any evidence to support either choice, for your situation. You can use logic to infer what might be true, from studies that looked at lumpectomy/rads vs. mastectomy for primary bc (no difference), but you're (alas) in uncharted territory. So you have to go with your gut, or maybe with the MD that your gut trusts the most. It will be the right decision, for you.

Becky cited some studies that have shown that when stage IV is the first diagnosis, it seems to help to remove the primary breast tumor - and I've seen several of those studies. But for some reason that I do not know, all oncologists are not on board with that plan. I think that there must be some quibbles with the studies and they are waiting for more evidence. It's not that they're not aware of the studies, yet they still are not always recommending breast surgery for de novo stage IV diagnoses. Maybe they are concerned about other studies that have shown that surgery can increase metastatic activity. I just don't know.

All that said, I also want to urge you not to rush. There is no urgency here - you have plenty of time to consider your options, and to get another opinion if you think that would help. Don't let them rush you.

If you choose mastectomy and want reconstruction - again that is a personal decision. No single best answer - just YOUR best answer. And again, you can take the time to gather information on which to base that decision. Not months and months of time, but certainly weeks. Take your time, consider the information that you gather, and see if you can tell what feels right to you.

What happened to the initial primary? It disappeared with chemo/Herceptin? And where was the mets? Bone only, or was there organ involvement? Not that those answers make any difference to your current choices - I guess I'm just curious. This new lump is ERPR+ also?

Let us know how you think this through, and what you decide. We'll have you in our thoughts.

Love,
Debbie Laxague

07-05-2009, 02:38 PM	#7
Debbie L. Senior Member Join Date: Jul 2006 Posts: 463	no clear answer Hi Joan, You ask excellent questions. But there is not one best answer to the question, which is why you're getting conflicting advice from experts. You could get another opinion, if you are truly not sure what feels right to you. You are in a fairly unusual situation and so you're not going to find any evidence to support either choice, for your situation. You can use logic to infer what might be true, from studies that looked at lumpectomy/rads vs. mastectomy for primary bc (no difference), but you're (alas) in uncharted territory. So you have to go with your gut, or maybe with the MD that your gut trusts the most. It will be the right decision, for you. Becky cited some studies that have shown that when stage IV is the first diagnosis, it seems to help to remove the primary breast tumor - and I've seen several of those studies. But for some reason that I do not know, all oncologists are not on board with that plan. I think that there must be some quibbles with the studies and they are waiting for more evidence. It's not that they're not aware of the studies, yet they still are not always recommending breast surgery for de novo stage IV diagnoses. Maybe they are concerned about other studies that have shown that surgery can increase metastatic activity. I just don't know. All that said, I also want to urge you not to rush. There is no urgency here - you have plenty of time to consider your options, and to get another opinion if you think that would help. Don't let them rush you. If you choose mastectomy and want reconstruction - again that is a personal decision. No single best answer - just YOUR best answer. And again, you can take the time to gather information on which to base that decision. Not months and months of time, but certainly weeks. Take your time, consider the information that you gather, and see if you can tell what feels right to you. What happened to the initial primary? It disappeared with chemo/Herceptin? And where was the mets? Bone only, or was there organ involvement? Not that those answers make any difference to your current choices - I guess I'm just curious. This new lump is ERPR+ also? Let us know how you think this through, and what you decide. We'll have you in our thoughts. Love, Debbie Laxague