Dec 27, 2012 - 12:11 pm
I have been doing great getting used to this new diagnosis, thanks to all of you. However,
Here is my stress. I am going to Dana Farber tomorrow per my request before the tumor board met. My gyno oncologist was very supportive and felt it was a dot the eye appt as she sees the tumor board recommend the standard carbo/taxal (sp?) sandwiched around external radiation. But to ease my mind i should go. So she made the appt before the board met. She even said make it a day and go for lunch.
when the board met they reviewed my case and thought that since it was Stage 1A ( no lymph node involvement and the number taken (61 pelvic and 20 arotic nodes) all negative incuding the wash etc. ) they also didn't see any real invasion of the uterus other than the 4CM polyp that formed from the tumor. I believe it barely went into the wall of the uterus),they thought was a good candidate for an active clinical trial.
I finally got a hold of the clinical trial number the tumor board was suggesting. On clinicaltrials.gov it is GOG-0261. The title is A Randomized Phase III trial of Paclitaxel Plus Carboplatin versus Ifosfamide Plus Paclitaxel in chemotherapy-Naive Patients with Newly Diagnosed stage I-IV persistent or recurrent Carcinosarcoma (Mixed Mesodermal Tumors) of the Uterus, Fallopian tube, Peritoneum or Ovary
The last thing i wanted to add to my life was this decision. I am far from a doctor and have little knowledge on how to even make this decision.
the trial is a random trial with one group getting the first set of drugs and the second the second set as in the title above. It is also my understanding that there isn't any radiation included in this trial. I am not sure why they don't want to give me radiation other than maybe since the tumor was removed and everything else was negative for cancer maybe there isn't anything to radiate? I remember reading a post form someone that said their dr stated that only time he saw recurrance was when they didn't do the radiation? or maybe it was radiation and chemo? My goal is to live a long and enjoyable life and only want to the best treatment to give me the best shot at this, what I am sure we are all striving for.
what i am curious has anyone been approached with this trial or any others? This one was started on 8/2009.
did you have any discussions with your doctors on the standard treatment? versus others
I invite all thoughts, comments, information, anything to help me through this decision I didn't think was even going to be on the table, or even bring to Dana Farber tomorrow. I did research my dr at Dana: Farber Suzanne Berlin. Been in practice since late 90's so has a lot of experience in complex gynocological cancers. She teaches at Harvard Medical School. So hopefully her experience is helpful
I will add what I find out from Dana Farber tomorrow. Till then to keep my stress down I go back to all the positive threads I have read here and thank everyone for being so supportive.
hope everyone's Holiday has been enjoyable