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I just found out that my granulosa cell tumor was ruptured while being removed. My problem is no one knows what to do with me as far as further treatment. I've seen 4 doctors and have gotten 4 different views. Is there anyone who also has Stage 1C granulosa cell who would be willing to share their experience?
Thank you,
Margaret
Cancer Surgery Hysterectomy Breast cancer Ovarian cancer Chemotherapy Endometriosis Estradiol
Hi Margaret
I too had Stage 1 C. The surgeon said that there was some "spillage" and that I should have 6 rounds of chemo. When I met my oncologist, he basically asked why I neede chemo.
I think this early stage is a toss up whether you have chemo or not.
I opted for the chemo, felt like I better be safe then sorry, if that is all possible with ovarian cancer!
Take care,
Emily
PS Is there anyone out there that has the BRCA 1 or 2 gene? I have the 2, and would love to chat about that.
Thanks
Hi Emily,
I am waiting for the results as we speak. My Mom and Grandma both had breast cancer. I had stage 1 ovarian. I should hear back in the next two weeks.
Sue
I was diagnosed with stage 1c ovarian and stage 1c uterine, but endometrioid type. One tumor ruptured during the debaulking. My oncologist recommended that I have 6 chemotherapy treatments (which I completed 2 1/2 yrs. ago) just in case there were any cancer cells that were missed, even though all my lymph nodes were clear and they did a saline wash twice. I felt that since the tumor ruptured, I didn't want to take any chances. It wasn't an easy road to take, but I believe I made the right choice and I trusted my oncologist's expertise.
Best of luck to you in whatever decision you make.
Barb
Thank you both for your responses. The biggest problem I'm having is that granulosa is so rare and there are no studies and no set treatment. Every time we talk to another oncologist or chemotherapist, we get a different answer. The chemotherapist I saw today I liked and feel I can trust. He's going to confer with a specialist out of Dana-Farber. His thoughts are to go with the BEP treatment. I'm not sure how I feel about that. Will wait to hear what he has to say.
Best wishes to you all.
Margaret
I had a very similar experience. The first step is a total hysterectomy and having the other ovary removed. Chemo is not all that effective and causes permanent damage, so they usually wait until you have a re-occurrence to suggest it. Chemo now is generally taxol/carboplatin.
You will also need monitoring of your blood levels of estradiol, inhibin B and MIS. If these start to rise, I suggest laparoscopic surgery (and find The Best Oncological Surgeon in Town) to look. Surgery is the best tx for this illness.
We also have a support/info group called Living_with_GCT. It is a yahoogroup. You can email me if you'd liek to join. The only info you need to rpovide in you email addy. Send me a private message if you'd like this. I'll also try to friend you.
I've been living with this since 2005 and I'm okay, so try not to worry too hard. One day at a time!
Rachel K.
BTW- I have GCT. Treatment for this and other types of OVCA are very different. Seems we both live near Boston. I can even recommend the best MDs for you!
Hope to her from you soon!
When my inhibin rose (falsly a while back) basaed on that my onc was recommending BEP- 6 courses. before I agreed I asked for the inhibin to be repeated as I had had the most recent test done locally and it was sent to different lab than the previous tests. Thankfully it came back normal on the retest so i was spared any additional treatment.
I did not go through any chemo after surgery but my tumor was removed intact. I asked my Onc at that time why the lack of information on the subject and he said that because it was rare and it was so long term they really had no volunteers for studies. I guess its because one never knows if ti will come back until we happen to reach the end of our lives without a relapse we have no way of knowing who or when...makes sense as I wont sign on for any treatment that may harm me if I have no guarantee that I will be unlucky... I sure wish that they would come up with something to help us out...
Good luck with your decision.
Melissa
Wow!--It's so good to know others who has the type of cancer!!! I have gct. Rachel Ann- I would like to join your group. looking for you now!
Hi kayb,
We are a rare breed. I am now 2 years cancer free. My choice was not to have chemo and I'm happy with that. When were you diagnosed? Do you live on the east coast? Who is your doctor? Guess I should just ask for your story!
Margaret
I had 1 c no spillage but because the frozen biopsy did not show malignant cells there was no biopsy done on the nodes. There was no visual signs. My oncologist at CU recommended that since the stained biopsy came back with malignant cells and they were a rare vairiety (Brenner) that I should have six taxo/carbo treatments. I was really in a quandry so I go at second opinion at Mass General in Boston and John Hopkins. Both recommended that I have the treatments as a prevenative. I ultmately made the decision to have the treatments. I figured that three major Universities who do ovarian cancer research could not be wrong. You can go on line and have a second opinion done at MD Anderson in Houston. You will just need to have all of your records sent.
My concern in your case would be that the turmor which was maglignant spilled and may have spilled cells that right now would not be recognizable.
By the way, the only reason I did not do MD Anderson is because my MD taught at John Hopkins and knew the oncologists there and my nephew's roomate at Harvard med school is now the head of Mass Gereral so he had a direct connection to talk directly to the head of Oncology at Mass. If I had gotten one of the three tell me a different line of treatment, I would have had everything sent to MD Anderson. I figured I wanted at least three top people in the country to agree that putting poison in my system was the way to go. Trust me I fought it hard and long but I decided that maybe one was wrong but that I had better listen to three from top Universities. Did I make the right choice? Only the Lord knows but at least I made an informed decision.
Hi girls. I have Stage IIC, due to rupture during removal. Mine was contained, but had spread to the front of my uterus and gotten caught up in plaques from my endometriosis. It ruptured when she tried to remove it from the uterus. My washings and 20 biopsies were negative for cancer cells, but I too did 6 rounds of chemo and have been NED for almost a year. I am starting to bleed a bit, can't tell if it is vaginal or a urinary issue, but am going to a Gynecologist on Monday.
I also am BRCA-1 positive, and on August 13th had both breasts removed. I would be happy to talk about my experience.
Keep your chin up and think good thoughts. I know it weighs heavily on our minds, but at some point it will lessen. Good luck!
Karen
I am 1C, grade 1 and I am doing 4 rounds of chemo. Had 3 tumors, 1 was borderline and 1 had cancer cells and just made it to the outside of the tumor. Yes, they like to make sure they got it all so doing the chemo otherwise it could be worst. I am being treated at Dana Faber and I have Dr. Matulonis(not spelling that correctly) and she is head of ong. I also had Dr. Muto for my surgery and I heard he is really hard to get into but I guess I got lucky my gyn has done surgery with him and booked my an appt with him. I had 2 rounds only 2 to go.
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