Granulosa cell

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Granulosa cell

by Dollene_E on Mon Oct 21, 2002 12:00 AM

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I have been told I have granulosa cell cancer. It was discovered while doing a total hysterectomy due to a large cyst on an ovary. The cells were found in the pelvic washings done after surgery. I am told these cells can attach to other organs and grow new tumors. I have been advised to have chemotherapy. Is there anyone who has gone through this? If so, did you have chemo and how did it turn out? Has anyone been diagnosed with this kind of cancer and not taken chemo? What were the results? I would appreciate any response I can get on this subject.

Granulosa Cell

by Marilou on Sun Oct 31, 2004 12:00 AM

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Dear Dollene: I'm new to this site and saw your message. It's very hard to find info on granulosa cell cancer. In 1992 I had TAH/BSO for enlarging fibriods. When the pathology came back it showed granulosa cell cancer of the ovary. I went to see a GYN Oncologist at Yale. The findings were that no treatment was needed as they felt the tumor was encapsulated. In 2001 I was found to have mutiple nodules in both lungs. I was monitored with frequent CT scans. The nodules remained stable until March 2003, a lung biopsy was done and found to be granulosa cell. I was started on chemo. At my 9th treatment I had an allergic reaction and it was decided to stop treatment. I am still monitored every 3 months and the cancer has not grown. My doctor tells me it is a rare form of cancer and there is not a lot of research available. They tell me it will not go away. My doctor also told me that granulosa cell can turn up 10 to 15 years later in the lungs from the ovary. I hope you are doing well.

Granulosa Cell Cancer

by Tirza on Thu Feb 03, 2005 12:00 AM

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Hi, I just had a complete laparoscopic-vaginal assisted hysterectomy. The left ovary showed enlargement in the ultrasound and when they tested it after removal, they confirmed that it was a Granulosa Cell Tumor. I am now to get some other tests and am waiting for an appointment. Am likely looking at chemo sometime soon. I too have had a hard time finding anything out about it, and what I found is scaring me. My GP told me about a website, pubmed.com There you can get some actual medical articles etc. rather than just anecdotal experiences which very likely will not apply to you. I found it interesting. At least SOMEONE has something on this. I wouldn't mind hearing from you. It seems like you went through this a couple of years ago and I would like to know how it turned out for you. All the best. Tirza

Granulosa Cell

by Lindsayf on Mon Feb 07, 2005 12:00 AM

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Dear Tirza: I underwent a full hysterectomy in September of 2003 because of a large mass on my ovary. It was granulosa cell ovarian cancer. I went through 9 weeks of chemo (5 days first week, 1 day next week, 1day next week, 5 day week, 1 day week, 1 day week, 5 day week, 1 day week, 1 day week). The regimen was bleomycin, etoposide & cisplatin. This is the same treatment given to men with testicular cancer so I found it helpful to check out side effects, etc on those message boards. Granulosa cell cancer is very rare (2 % of all ovarian tumors) but if found fairly early, there is a 90-95% five year survival rate for stage 1 tumors. They can recur many years later however. I found more information then my oncologist had at www.emedicine.com. Encourage your oncologist to check these out because it is so rare, they may not have had a case before. Hope this is helpful. Lindsay

Granulosa Tumour

by Jane_f_2 on Sat Mar 19, 2005 12:00 AM

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Dear Marilou (and all other correspondents on this topic), I hope you are doing well. I live in the UK and have just been diagnosed with Granulosa cancer. I received the same information as you about its rarity, etc. Don't know yet whether it has 'progressed' to my lungs. However, have symptoms which suggest it has. I had a hysterectomy for fibroids ten years ago, and stupidly asked for my ovaries to be retained. Vanity, vanity! I thought they would protect my overall health and apperance! The same week I had the op, my husband died very suddenly, after 25 years marriage, which meant I experienced a relationship (eight years later) with a different man who subsequently contracted testicular cancer. When I started seeing him, although I didn't know it at the time, his previous womanfriend was dying from ovarian cancer! When I researched testicular cancer, I found a suggestion that it could be passed on via intercourse. I thought I was safe, having had the hysterectomy. Now, obviously, I think otherwise. I hope everyone is fine and look forward to hearing from anyone who cares to respond. Take care, Jane.

Granulosa Cell Tumor

by Angel123 on Sun May 15, 2005 12:00 AM

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Hi I was also diagnosed with this tumor. I was told it was a very slow moving lazy type of cancer.. I would like to know why it seems to spread to the lungs.. That really scares me.. MIne was found in stage 1 It was also confined to my ovary. I would like to hear from others that are in my boat.. please respond

Granulosa Cancer

by Katiejo on Fri May 20, 2005 12:00 AM

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I just found this message board today, and it has been very informative to a point, it is just regular people talking in regular terms, that you can understand. My mother is having surgery at the end of the month for granulosa - ovarian cancer. About 12 yrs ago she was diagnosed with ovarian cancer, had a hysterectomy. In the summer of 2004 she was again diagnosed with it, she has had like 6 chemo treatments, now surgery. I am learning from the rest of the messages that it can spread into other organs, and like you I am unsure as to why it spreads into other organs?????? Hopefully more people will share their stories and we can all learn from each other!!! The only things that I gather is------- it is likely to come back at some point,-------- and that's something that we don't want to hear, and it is rare.

Adult Granulosa Cell Tumor, Recurrence, Treatment, and Long-term Side Effects

by Wvmhp on Mon Jun 13, 2005 12:00 AM

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Dear Lindsay, I had a very similar experience in 1999 and 2000. In 1999 after complaining of migraine headaches, pain during intercourse, enlarged breasts, and some other vague symptoms caused by the elevated estrogen levels in my system my GYN found a mass on my overy during pelvic exam. He sent me for trans-vaginal ultrasound which confirmed the mass. My physician felt the mass was a simple ovarian cyst. He removed it via laparoscopy but the pathology results confirmed the mass was adult granulosa cell tumor. A few weeks later I went back for total abdominal hysterectomy, salpingo-oophorectomy, partial omentectomy, pelvic node dissection, appendectomy, and multiple biopsies. No further cancer was found and I was told I did not require further treatment as I was Stage I. In 2000, less than 12-months later, I had a recurrence with soft-ball sized mass in the pelvis--Stage IIb. Again, had pelvic surgery for removal of mass and pathology showed no further spread. Was told I needed chemotherapy and underwent four cycles of cisplatin, etoposide, and bleomycin on same schedule you discribed: 5-days straight of cisplatin and etoposide every 3-weeks, bleomycin once a week every week. I had particularly severe problems with vomiting and nausea which were finally somewhat controlled with Dexamethasone, Ativan, and Kytril cocktail in a time released pump. I am now suffering avascular necrosis in both hips from the dexamethasone, peripheral neuropathy from the cisplatin, Raynaud's from the bleomycin, and persistent arthralgias and myalgias. But five years later I'm still alive and still in remission. You give very good advice in warning readers that most oncologists have probably never seen a case of granulosa cell tumor and they are well advised to provide their physicians with as much information as possible about it since it is very dissimilar to other forms of ovarian cancer. I would further recommend asking around until they find a GYN Oncologist who has some experience with this cancer even if that means going to Sloan-Kettering, M.D. Anderson, or another big cancer center. I also found, as you stated, most of the information available concerning this chemotherapy regimen was relating to testicular cancer. You properly stress the fact that the survival rate is excellent with early diagnosis. Because of the high risk of recurrence (about 38%) even decades after the initial diagnosis, any woman who has been diagnosed with granulosa cell tumor needs to be regularly followed-up for the rest of her life. For me that means tumor markers: CA-125, Mullerian Inhibiting Substance, Inhibin-A, and Inhibin-B every 3-months. Initially my CT-scans were done every 3-months, then every 6-months, and now once a year to cut down on the amount of radiation exposure I receive. I would be very interested in hearing about your personal experiences with long-term side effects from the chemotherapy. I wish you continued good health!

Long Term Side Effects

by Lindsayf on Mon Jun 13, 2005 12:00 AM

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Initially, I experienced neuropathy in my hands and arms which lasted for about three months. I still have Reynaud's in my fingers, which is a nuisance but one I can certainly live with. I'm glad to hear you remain cancer free. I have a year and a half so far. Lindsay

Granulosa Cell Tumor

by Mariah on Wed Jul 20, 2005 12:00 AM

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I have had my first recurrence of GCT, and opted for the removal of the tumor instead of the total hysterectomy. I did quite a bit of research this time around (first time was 9 years ago and just did not have good info available to me, also my Inhibin and CA-125 tests were in normal range...it was only a few months ago that an Inhibin B test was done and found to be elevated) and found with my hormone profile that removal of other ovary and uterus would make my ability to deal with this more difficult (the hormone testing indicated I am testosterone-dominant, and even postmenopausal women's uterus/ovaries are still producing sex hormones). Am now waiting for the CT scan results. An MD at The Center for Natural Oncology indicated that chemo and radiation would not make any headway, that the slow growth made these not effective. I am working with a combination of 3 naturopathic and medical doctors who use integrative medicine philosophy, to work on my immune system -- alkalizing my system with a raw food diet, cleansing, improving my liver health, getting more exercise, and decreasing my stress level. Anyone else out there doing an integrated medicine approach? I greatly appreciate hearing what other women have experienced, I am literally an anomaly in the ovarian cancer world where I live and so don't know what to expect in the future. Thank you all!
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