Thank you, Cara. I cannot tell you how much it means to me to hear your experience with this; and that there is a 10 year survivor.
The stats I have been reading were more grim where cancer hadn't responded to treatment and spread during or immediately after finishing chemo and radiation. Although, that could be because of differences in quality of and access to care in the US. My kids and husband finally convinced me that exenteration made sense. It has been so frightening and overwhelming.
In the process of acquiring all of the progress notes from my doctors in an effort to apply for a clinical trial, my rad onc's office (he's out of office this week) also sent me a copy of the pet/ct scan written report, which I finally noticed yesterday evening. I'm going to paste the actual text in below. I hope that's okay. If not, please let me know and I will remove it, or feel free to edit this post if needed.
While I am no doctor I do not think the report says what my hematologist stated it said. I have put in calls to several other of my doctors about this, but have not heard back from them yet (some are very busy and some are out of office). I see nothing even remotely like what my hem onc described. I admit I may be reading the report incorrectly, but it seems like pretty plain language that even a layperson can parse.
My hem onc has been a very sweet guy and I really like him. I know he wouldn't do it on purpose, but it seems like something went terribly wrong in the transfer of information somewhere along the line. It seems like a very serious issue to make such a mistake with. I'm glad, of course. I'd much rather it be a mistake this way than in the alternative. I'm just stunned and at a loss and really sort of having trouble shifting the mental gears back to where I was 6 days ago prepared to accept good news. I also realize that when and if I ever get another message and phone call like that it probably won't be an error.
Those people who have gotten this sort of news can appreciate what our family has been going through the last five days. And my heart goes out to them moreso now for having experienced this.
I'm sorry this was such an odd, panicky entry into this forum. I have been reading here for the last year.
-------begin report----------
"FINDINGS:
[head, neck chest, mediasteinum all normal, except persitent thyroiditis]
ABDOMEN/PELVIS: The right hepatic lobe elaborates SUV 3.0/3.8 mean/max. No focal hepatic lesion. Normal-appearing gallbladder. The pancreas are unremarkable. There is physiologic activity in the GI tract. Mesenteric fat planes are clear. The spleen is unremarkable. No retroperitoneal adenopathy or retroperitoneal foci of abnormal FDG uptake. Usual excreted activity seen in the kidneys, ureters and urinary bladder. There is a retained brachytherapy seed in the vicinity of the cervix. Stranding seen in the fat adjacent to the cervix is reduced. Fluid that was formerly seen to distend the uterine cavity has resolved. The cervix demonstrates FDG activity with SUV 5.4 max in the expected location of the cervical canal. This compares to previous SUV of 10 with more extensive involvement of the cervix. The fat plane between the cervix and the posterior bladder wall appears to be somewhat more defined. No pelvic adenopathy is seen.
MUSCULOSKELETAL: Focally increased FDG activity adjacent to the greater trochanter is felt to be degenerative/inflammatory. Calcified presumed injection granuloma seen in the left buttock area.
IMPRESSION:
Decreased uterine size with decompression of the fluid and decreased cervical FDG activity consistent with response to treatment.
Retained brachytherapy seed seen in the vicinity of the cervix.
No focus or pattern of activity to suggest regional or distant metastatic disease."
-------end report----------
