wierd cancer

New to this--so here's my wierd cancer situation (it's a bit long, but bear with me...): I was diagnosed with grade 3 endometrial andenocarcinoma in March 2010, just 10 days after my 52nd birthday. Had a complete abdominal hysterectomy with node sampling, washings, etc--all clean but the cancer had invaded to within 3mm of the outer uterine wall, and there was lymph vascular invasion. Felt great after healing from surgery, then went through 6 weeks abdominal external RT + 2 brachy treatments that ended mid-July. Somehow made myself go in everyday for all of that. In the midst of the radiation had a biopsy of my thyroid as the CT taken in April prior to RT showed possible thyroid problems and I was in fallout range of I-191 as a child. Thyroid biopsy showed Hurthle & follicular cells, but so far no cancer. By the end of August, though like others just beginning to deal with the emotional mess, was beginning to feel pretty good again. BUT...

In early September, I found a lump on the top of my pelvic ridge in back. My primary physician was immediately concerned. Turns out this showed up on the April CT but was not commented on because it was too small (about .5 cm then) and in the wrong place to be a met. It took until Sept. 27 to get the biopsy done, and then path read by local and other big cancer center--but both inconclusive. Excision of the lump, which by then HURT, October 21. PET day before surgery showed a little activity at the thyroid and the tumor lit up like headlights--it had sextupled in size since April--but no other hot spots. Took two reads on the excision to come up with the decision that it is/was a met of the endometrial cancer.

So the summary is this: I have grade III, Stage IV endometrial cancer whose behavior, as one doctor put it, is "bizarre". Recommended treatments are RT to the surgery site (at least it would not involve any organs) and 8 infusions of doxorubicin (though the drug of choice is not certain yet). Will get at least one more opinion on the excisional pathology (would like to have two that agree!), and will get a second (and maybe a third) RE the currently proposed chemo. Through every step of this most of the medical staff have been great, though several need training in what to say to people in crisis, and there were numerous bungled blood draws and nurses too busy to do anything but hand me my discharge papers and say call if you have a problem. I do ask for copies of all reports--even got a copy of the April CT on disc--when the docs see me coming they get ready for lots of questions.

I am not in anyway afraid of death (far more afraid of radiation, though I know that makes no sense), and am far more unhappy when having to deal with doctors or hospitals than thinking of my inevitable demise. I will NOT go through these difficult treatments just to grab onto every possible minute of life, but will consider treatment that would gain me a significant amount of time (significant defined for me as years more than the treatment and its recovery take--being given a year of life when that year will be miserable seems foolish). The docs are guessing on the chemo, basing on breast cancer lumpectomies. No one has any good predictors--all studies of advanced endo cancer are based on multiple mets to organs; I had a solitary (but exceedingly aggressive) met to the periphery of the pelvis.

Would love to hear from anyone who has any similar experience or knows of anyone with anything similar.