One Year after

Amen Ronda!

 

Edited by Lauriejn - Oct 31 2008 at 7:16am

Ronda,

Ronda and Nancy,

Edited by kmartin - Oct 31 2008 at 3:51pm

That is one of the shall we say unfortunate things about TNBC as it is for hormone positive bc.

Edited by trip2 - Oct 31 2008 at 5:50pm

No one wants to offend, however the impression certainly is that you are not giving any credence to those of us that have had options other than mastectomy's. Even to the point of letting us know our Dr.'s could not be as on top of it as your dr.s' or your opinions.

I must say some of the discomfort in these discussions DOES arise from the disquieting sense of whether or not I have done all that I can do....even if it makes me take a pause. Maybe that is a good thing!

Kirby,

Hello Ladies,

Perhaps I am in the minority but I was not told my hormone status until after I had my lumpectomy. As a matter of fact I did not know anything about hormone status until I was told by my rad onc one month AFTER lumpectomy that I was triple negative and would thus have to have chemotherapy even though I was stage 1.  Is the hormone status normally determined at time of biopsy? If so why was it never mentioned to me? When I went to see the surgeon he explained that I had the option of a lumpectomy or a mastectomy. He told me that the recurrence rate was the same for a mastectomy and lumpectomy w/radiation and/or chemo. Sorry I can't remember exactly. After my lumpectomy he said everything was great - no nodes and clean margins but told me I'd need chemo so he must have known about the TNBC. I had no intention of having chemo until I knew my BRCA results (which turned out to be mutation of unkown significance). Again it was at my appt. with the rad onc (erroneously scheduled prior to regular onc appt. that I was simply told "you're triple negative you'll have to have chemo"). Of course that is when I first searched for triple negative breast cancer on the net and I've been here ever since. Yes, long winded as always. I've always thought I received very good care but this is very disturbing. When I met my regular onc on the first appt. he aplogized that I had not been scheduled to see him sooner and they started chemo just as soon as they got my port in.

So, did these guys totally drop the ball or what? It was the radiologist that told me my dx of IDC and never mentioned hormone status? Who normally does this, was it the surgeon's responsiblity or what? I suppose it's too late now but these guys need to get their act together. Just to be clear I was referred directly to the surgeon by the radiologist. I never saw an oncologist until one month after lumpectomy.

Darla



Edited by Darla - Nov 01 2008 at 11:17am

Darla,

Thank You Ladies,

There is a lot of variance to be sure. I didn't see my pathology reports until I finished chemo. I asked for them because I never know how long I'll be in Bloomington and wanted all my records.

I agree Krisa that we should have been told before the surgery. I don't know if I would have chosen mastectomy but I certainly would have been better informed. My radiologist told me I was IDC and that it was grade 2.

Nancy, hearing about Lori's friend I  guess I'm lucky the oncologists told me I was tn and that they understood that meant I'd need dd chemo. My onc also told me not to participate in a study where they do only partial breast radiation. He told me that being tn it was not a good idea. So I am happy with them. Perhaps it is the surgeons and radiologists who need to be better educated.

Pam, everytime I think about your stupid onc my blood boils. One thing I am very pleased about with my onc is that he never talks down to me or discourages me from educating myself.