Chemo Decision

Hello, anyone out there!  I've never been in a discussion forum before, so please forgive me if I'm doing it wrong.

I am post-mastectomy, IDC (with widespread DCIS also), Stage IIb, Grade 2, 1 affected node, with an Oncotype score of 14, but some scary prognostic factors on the pathology report (lymph-vascular invasion, nuclear grade 3, extensive necrosis, Extensive Intraductal Component, etc.).  My tumor was small (1.1 cm), but actually my surgical oncologist was discouraged by this, saying that the fact that such a small early cancer had made it into the lymph system at all is a little disconcerting.  

My dilemma is that I've now seen four medical oncologists, two of whom have recommended AC→T, and the other two of whom have recommended TC x 4.  My favorite doc among the bunch, who is totally amazing in terms of her thoroughness, attentiveness, expertise, attention to detail (especially regarding some other health/psychiatric issues I have), and just her all-around ability to form mutually respectful and personable doctor-patient relationships, is one who recommends TC x 4.  Since the beginning, I have felt a pull toward the more aggressive AC→T, but she feels that it would be overtreatment in my case, based on my low-risk oncotype score --and will only agree to TC x 4.  I talked with her about TC x 6, and while she agreed that it would be a wonderful solution to this dilemma, she said she can't do it because it's not yet approved by the NCCN for my type of cancer.  She said she was sorry, but she is bound by her practice rules to stay within NCCN Practice Guidelines.  Plus, she said I would run a very high risk of my insurance not covering those last two Tx's.  

 I'm wondering if anyone out there has faced this same dilemma, and how you made your decision.  I'm also wondering, for those of you who are doing TC x 6, how are you doing it?  Have you had trouble with insurance? How are doc's "getting away with" treating patients with a regimen that is not an approved treatment?

Thanks for any replies. 

Seabee,

Thanks for your response.  I guess I was conflicted about it because I had two oncologists recommend AC→T because the pathology report indicated a more aggressive cancer than the Oncotype score did, and because I am on the young side (39).  But I have decided to stick with the doc I liked best and the TC regimen.

Thanks again. 

Thanks again, Seabee.  I'm feeling pretty comfortable with my decision now.  And, yes, I do understand that the Oncotype test is objective, rather relying on a pathologist's subjective interpretations.  It probably would have helped if it had been the first two docs who recommended TC x 4, but the first two were the ones who recommended ACT, and they were from a highly ranked cancer center in Chicago, whereas the two who recommended TC were both in non-teaching, albeit high quality, community hospitals. Although I sometimes think that for people who don't have rare or hard to treat cancers and aren't interested in clinical trials, the high-ranking, research-focused, cancer centers can be a little over-emphasized. Despite having some tough decisions to make along the way, and conflicting recommendations, I have been very impressed by the quality of care I have received in the community-based hospital where I have received my Tx so far. 

Now I'm just ready for the Tx's to start.  Was supposed to be this week, but has been postponed for Monday.  (Because of other health issues, Doc A had to talk to Doc B about medication complications/contraindications, but Doc B has been on vacation.  Yawn!)  I'm six weeks post second surgery, and three months post Dx, and still waiting for my first infusion.  I'm ready for that emotional flip to be switched from, "there's all this research to do, tests to have, results to wait for, time to heal, and hard decisions to make, etc." to "ok, this may not be how I want to spend my time, and this may be hard, but at least I know that now I am actively fighting this disease."  Ya' know?