Hi all, Iam from Ontario Canada. I'm new to this site and just wanted to share my experience with you all. I am very happy to have for d this forum as I have never heard about anyone having GCT.
I was diagnosed after a laparoscope surgery for a 5 cm cyst that was found on my right ovary in 2009 at the age of 26, I was experiencing so very irregular bleeding, I was bleeding on and off for 6 months). Doctors had no idea what was wrong with me. Advised me to go on birth control and that this is normal for someone my age. I went in for a second opinion and after an ultra sound I was miss diagnosed with a Dermoid cyst and PSOS.
A laparoscopic surgery was scheduled to remove the mass. During surgery the tumour ruptured spilling into my abdomen. And after a post surgical biopsy I was diagnosed with Stage 1 A Granulosa Cell Tumour. And referred to an oncologist,who has not had a lot of exposure to this type of cancer.
After an initial meeting I was advised, because the tumour ruptured to have a second surgery to removed the right ovary and Fallopian tube ( I was getting married and wanted to preserve my fertility so I can still have a family). Surgery went well. The ovary and tube tested negative for any cancer cells. The doctor told me that they got everything and that this cancer usually return 20 years later. I was put on birth control and have been closely monitored for the past 4 years.
Unfortunately, now at age 30, I have had a Reaccurance of a few solid masses in my abdomen - i had one near my left ovary, 2 small tumours in the pouch of Douglas, 1 on/touching my rectum, and a few small ones all over my uterus( which was not seen in the Mri) in March of this year . And have just went through a fertility sparing abdominal surgery to removal all the tumours. The largest was about 2 cm.
Because this was a fertility sparing surgery my ovary and uterus were not removed. In addition the was no indication prior to sugary that the rectum was affected so they were only dissected off. To completely be certain there is no more cancer cells in the area a low-anterior resection of the rectum was recommended.
In addition, the was presence of a Miliary ( sort of like tiny little sand pebbles or quinua ) disease on the uterus. They could not be removed but were cauterized. Therefore, cancer cells were left behind.
My oncologist advised she now recommends a complete hysterectomy and an anterior resection of the rectum to make sure that the cancer has been completely removed.
She is uncertain when the cancer will come back, however, with cells left behind its guaranteed to return.
I have still not started a family. However, when I found out about the reaccurance, I did go through IVF and was able to preserve 6 embryos. The IVF was not harmful. It actually shrunk my tumours by 50%. I took Femara throughout my IVF cycle which is most likely the reason my tumours shrunk.
Now I am faced with a life changing decision. Should I go through with the surgery ASAP or try to carry a pregnancy. My oncologist advised she does not know if the hormones associated with pregnancy would speed up or increase the cancer coming back. And if it does that would mean some really big decisions during the pregnancy ( early termination or delivery of the baby). She also of course does not know where the tumour would come back and if it may potential be dangerous to my life.
It is certain of course with cancer cells remaining the cancer will come back. However, I know that this type of cancer, GCT, is usually referred to as a lazy, slow growing one. Would 9 months make a huge difference?
I have searched the Internet, medical literature, and journals but I have not been able to find any information regarding pregnancy and GCT. I would love to have a child of my own but I also want to be around to watch him/her grow up. I really do not know what to do. I know for some the answer may be clear, however, I really want a family and want to make sure that whatever decision i make its the right one for me.Making it a decision i can live with.
Does anyone have any advise? Or have been pregnant during, after GCT. Would the normal changes during pregnancy speed up the growth of a tumour if it returned during pregnancy? Could it possibly reoccur in another area? Does anyone know a specialist inGCT. Also, if I do decide on a hysterectomy has anyone ever used a surrogate?
I understand your concerns and indeed there are a few literature regarding GCT and pregnancy.At this point, seeking another specialist's opinion may be beneficial. And there was a thread previously here in Medhelp that may also be of help. http://www.medhelp.org/posts/Ovarian-Cancer/Pregnancy-after-Granulosa-cell-tumor/show/403997 The members with the same issues in this specific thread may help with referrals to specialists also. Hope this helps. Take care and do keep us posted.
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