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Feb 2, 2012 09:12PM
susieq, nope, he didn't even mention grade. It was all about tumor size. If I were 5 or 6 mm he would treat me. He said the studies do not break out t1A from the t1B and are small numbers of patients anyways so one can't draw strong enough conclusions to warrant the risks of chemo/herceptin. When I asked him about how some docs say biology of the tumor (HER2) should be considered instead of just looking at size, he agreed biology matters, but continued to reiterate that the studies are not there to say that it matters in as small a tumor as I have. Basically, nothing tips the scale to treat - he has never treated anyone under 5 or 6 mm with chemo/Herceptin. He wouldn't consider even one of the "lighter" regimens for for my size tumor. He estimated my 10 year distant recurrence risk as 5%. Again I brought up the MDAnderson study of a 15% distant recurrence risk, and he continued to say that it was a combo of t1a,b patients, you couldn't separate them out to determine risk by size b/c the numbers of patients in this group are too small to begin with - so I can't apply that study to my size tumor. I asked him if my young age would make my any higher risk (and mentioned the MD Anderson study again), and he said not enough to warrant treatment other than Tamoxifen. This is despite acknowledging Tamoxifen does not work as strongly with HER2+ patients, but it still works. He said if I were his sister, daughter, etc. he would not treat me.
He mentioned that even if we did it, insurance may deny it b/c the tumor is so small. We asked if we paid out of pocket would he be willing to consider even just Herceptin alone (LOL, figured we'd pretend we could just to see the answer - told him we knew it cost ~ $100K and we could swing it). Nope. I just wanted to make sure money was not an issue in the decision making process. It wasn't .
I asked him why facilities test tumors this small if they are not going to use the test for any clinical treatment purpose. He said it is just standard to run the test. He acknowledged that HER2 is not routinely run on DCIS b/c it doesn't change treatment. But they do run it on all IDC's. I'm a bit p*ssed that if the test means nothing, why is my insurance billed for it, and why am I put through such emotional havok? To what end? Is it just so they can track me like a lab rat to see if I recur or not? Sorry, I just really, really wish this test was never run on me.
One interesting thing - I asked him about if chemo had been recommended, would it have been too late to start. He said no, there is no real good study that can show one way or the other how soon you have to do chemo after surgery. Interesting.
When I told him I know of at least 4 t1a's here that have recurred with mets, he seemed a bit surprised, but then he said well 4 is not that many on a message board statistically (I know he's right, but I had to point it out to him that I know people DO recur.)
Even though he completely said no and gave me no options except Tamoxifen, I really loved the guy. He spent lots of time with us, was completely open to our questions and was not defensive at all when I brought up questions, and generally was a really nice guy and easy to talk to.
AussieKate, thank you for your two cents. I have two more oncology opinion appts set up for next week. We'll see what they say. Just so you know, my onc today actually said the side effects of Herceptin are not terrible. He said regarding the heart damage, the risk is relatively low, and usually reversible. (Yet he still wouldn't prescribe even Herceptin alone for me. This again is because he doesn't believe small tumors need this treatment.)
Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.