CancerCompass message board discussion started by Dollene E. on 10/21/2002 http://www.cancercompass.com/message-board/message/all,321,0.htm Fri, 21 Nov 2008 00:00:00 GMT Fri, 21 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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. Dollene E. Mon, 21 Oct 2002 00:00:00 GMT 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. Marilou Sun, 31 Oct 2004 00:00:00 GMT 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 Tirza Thu, 03 Feb 2005 00:00:00 GMT 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 Lindsayf Mon, 07 Feb 2005 00:00:00 GMT 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. Jane f Sat, 19 Mar 2005 00:00:00 GMT 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 Angel123 Sun, 15 May 2005 00:00:00 GMT 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. Katiejo Fri, 20 May 2005 00:00:00 GMT 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! Wvmhp Mon, 13 Jun 2005 00:00:00 GMT 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 Lindsayf Mon, 13 Jun 2005 00:00:00 GMT 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! Mariah Wed, 20 Jul 2005 00:00:00 GMT Looking for any information. My son was married just 6 weeks ago. Two weeks ago his 23 year old bride had severe pelvic pain. When finally admitted to the hospital a mass was found on her ovary by ultrasound, in the mean time a rupture had occurred so surgery was put off for several days while waiting for the infection to clear. The tumor was 10cm x 15 cm. They are stationed in the midwest and the doctor's there know very little about this type of tumor. They are conferring with docs at the mayo. Her CA 125 was 700. We really need information. Anyone who can help please respond. Deb Debkay Thu, 15 Sep 2005 00:00:00 GMT I am sorry to hear about your daughter-in-law's ordeal, I went through a similar situation with my first tumor rupturing. It is really important to work with a gynecological oncologist who can give much more information and suggestions for treatment than a local ob-gyn. Find a major medical center (I went to Univ. of Wisconsin -- Madison, to see Julian Schink, MD, he is now at Northwestern U. in Evanston, I think). I have not gone to the Cancer Treatment Centers of America (yet, still an option, I now live in Montana), but I do like the fact that they approach cancer treatment on all levels (as it should be) -- conventional and naturopathic, diet, acupuncture. Their gyn oncol is in the Chicago area, I think. It is really hard to stay calm at a time like this, the best thing is to take deep breaths and let it go, stay away from thinking about the "really bad scenarios" and know that positive attitude is everything, even if you have to fake it at first. I will keep you all in my prayers! Debkay Thu, 15 Sep 2005 00:00:00 GMT I am sorry to hear about your daughter-in-law's ordeal, I went through a similar situation with my first tumor rupturing. It is really important to work with a gynecological oncologist who can give much more information and suggestions for treatment than a local ob-gyn. Find a major medical center (I went to Univ. of Wisconsin -- Madison, to see Julian Schink, MD, he is now at Northwestern U. in Evanston, I think). I have not gone to the Cancer Treatment Center of America (yet, still an option, I now live in Montana), but I do like the fact that they approach cancer treatment on all levels (as it should be) -- conventional and naturopathic, diet, acupuncture. Their gyn oncol is in the Chicago area, I think. It is really hard to stay calm at a time like this, the best thing is to take deep breaths and let it go, stay away from thinking about the "really bad scenarios" and know that positive attitude is everything, even if you have to fake it at first. I will keep you all in my prayers! Mariah Thu, 15 Sep 2005 00:00:00 GMT Hiya, I realised I was alone out there,and then found this site, which was a big relief, knowing a wide range of info on GCT. I was diagnosed with GCT in June 2005 at the age of 28.They removed my tumor and my left ovary. Like you, initially no further cancer was found (stage I), but my consultant did say there is still a small trace of cells, which in medical terms called slow growth cells. At this stage, I am on a follow up of CA125. My first tumour marker was in Sept, but I havent had one since,as my results are clear. And I havent had a scan since June. As you were on stage l, but in 12 months GCT re-occured, but did you feel the same symptoms? How soon was it have the all clear sign? I am now feeling that I am left with 1 ovary, early menopause effects, and nausea, vomiting and various pains in the ovary, and abdomen area. I still wonder, even though I am in the all clear, but am I ????? Good Luck in your GCt experience Fiona Fri, 25 Nov 2005 00:00:00 GMT I was diagnosed 7 weeks ago and 5 weeks ago I had a total hysterectomy. My doctor is the head of the Gynological Cancer Center for Desert Hospital in Palm Springs, Dr. Genessen. I was told by other doctors and nurses he is the best. My tumor was 4 cm. Mine was found by doing an ultra sound because of abdominal pain. It had burst. It had engulfed 1 ovary. He feels it will not reoccur at least for 10 years. He said chemo doesn't work on this type of cancer. I was stage 1C. After reading all these emails from people who have had this cancer I am convinced I need to drink the Noni Juice. My sister has told me for years to drink it. I didn't want to because the taste and smell to me are so bad. She told me a year ago that if it smells bad to you then you might not be too well. I thought she was crazy and then this happened. I don't know what causes it and how to prevent it. But after tonight I am going to start drinking the Noni and try to keep it from reoccuring. And I am glad I had a total hysterectomy. I wish everyone who has this cancer the best. Marlinda Chelsea Mon, 05 Dec 2005 00:00:00 GMT Hello Angel123. My name is Cheryl and I too am in remission from granulosa cell tumour of the ovaries. I was suffering severe abdominal pains in september 2004. It took 3 weeks for the hospital 2 find out what was wrong. By the time they realised I had a cyst on my ovary, i looked like I was having twins. I had a full hysterectomy, and three weeks later was diagnosed with granulosa cell tumour grade 1a. I underwent BEP chemotherapy and finished that in february this year. I have had three ct scens since then and all seems to be okay. fingers crossed. I too am worried about the cancer coming back, it scares me all the time, but my oncologist has told me I will be monitered for the rest of my life, I hope that will be a long time. I am 34 and have 4 children and want to be around for them for ever. This is my first time on thes web site. I think it is brilliant. If anyone wants to reply, please do. Chez7 Wed, 14 Dec 2005 00:00:00 GMT Shortly before turning 40 I started to notice several symptoms. At first they seemed vague, but in time the problems increased. I started to have lower back pain, I was extremely sleepy, my monthly cycle became erratic, and I looked like I was 7 months pregnant. My original doctor was convinced that I was pregnant. When the test turned out negative I was sent to an OB/GYN who was also a surgeon. I was sent to have an ultra sound and finally the answer became very apparent. The technician would not even look me in the eye when I asked if she saw a problem. I had an extremely large tumor located over my right ovary. The next few days now seem like a blur. The OB/GYN strongly suggested a complete hysterectomy, removal of the tumor, and anything else that was close by including my appendix and part of my stomach lining. Two weeks later that is exactly what happened. By that time I appeared to be 9 months pregnant and in so much pain I wished I were dead. I was in Stage 1 and almost 4 years later I am thankful to be alive. I do receive a CAT scan every year. Many times I have wondered if growing up on the family farm and being exposed to chemicals contributed to my cancer. I am afraid my cancer will return, but I do try to live every day to the fullest. I feel truly blessed that I had the support of my husband and family through this difficult time. I wish you and all the respondents well in the future. Sue m w Thu, 22 Dec 2005 00:00:00 GMT Approximatly 5 years ago I was rushed to the hospital with severe rt. abdominal pain, at the time I did not have insurance and I ended up having to go to county hospital. However, once I arrived the pain had subsided quite a bit (the tumor most likely had ruptured by that time), they never did an ultra sound or any test at all. Approximatly a year later during my annual Pap. I realized that I still was having the pain but it was at a lower level of pain and I did not think any thing of it prior to my exam. My physician sent me for a vaginal ultrasound, and lo and behold they found what they had thought an ovarian cyst; the doctor suggested that I could choose to live with the pain or have it removed, I choose to remove it. Two weeks after I had laproscopic surgery of a rt. oophorectomy; two weeks after the surgery the biopsy report came back I had granulose cell cancer; I was referred to a Gyn Oncologist who recommended that I have a complete hystorectomy, two weeks later I went back into surgery. Now three years later I have a re-occurence, two nodules in my Lt. lower abdominal cavity, one of the nodule is attached to my mesintary which supplies blood to the colon and sm. intestine, which means that I may have to have part of my colon removed. My Oncologist is suggestin that I have chemo after this surgery, however, he said that one of the major side effects is permanant lung damage that can be life threatning and I would have to live with it for the rest of my life. And since this cancer is so rare they do not have a specific chemo for it, and that the chemo that they do used for it (the one that is used for men with testicular cancer) is not a guarantee to work. And who knows with time I may not have another re-occurance and if I do it might be many years from now, and maybe by that time they will have a chemo that really works? What are the side effedts of this chemo that they are currently using? I had a PET scan done and the nodules are isolated in my abdomen. What should I do? Eviem Sun, 23 Jul 2006 00:00:00 GMT Kia Ora, We recently announced the world's first repository of case histories specific to GCT. Since then we have had a great response from people providing their medical histories, but we know there are more stories out there! If you are computer saavy enough to find this message, then you can easily complete our questionnaire. We need your participation. WE DO NOT ASK FOR ANY PERSONAL INFORMATION, ONLY FACTS ABOUT YOUR MEDICAL HISTORY WITH GCT! If you haven't yet provided your information please, please help us help ourseleves by completing our on-line questionnaire at http://www.gctf.org.nz/casehistory/index.pl We will soon be making the database available for everyone to query (at no cost), including researchers who are working on our behalf. The more information they have available to them the better the possibility of them finding treatment options that are both effective and less toxic. Thanks for your help with this monumental effort! Regards, Sofi Managing Director Granulosa Cell Tumour Foundation NZ Sofi in nz Wed, 23 Aug 2006 00:00:00 GMT Just want to alert all of you, that may not be on our mailing list, to the latest Newsletter from the GCTF NZ: www.gctf.org.nz We have opened a special Christmas Catalogue for shopping, so let everyone know about it since we are very keen on raising money for GCT research. I know if we all pull together we can accomplish the task set before us. I am tired of sitting in the dark not knowing if a drug will work or the test markers are correct, as I am sure all of you are too. So let's make a difference this upcoming holiday season, and help bring our research ideas to realization. My best to all of you, Sofi Granulosa Cell Tumour Foundation New Zealand Sofi in nz Wed, 27 Sep 2006 00:00:00 GMT It's been five years since you left your msg, but I'm guess with cancer, a reply might still be valuable.  I was diagnosed in 2003 with granulosa cell turmor and had it removed surgically.  I was not given any treatment, no chemo, following the surgery.  The doctor said if it came back it probably wouldn''t be for 20 years.  It came back in three, in 2006, big time.  Four tumor were removed this past December, along with two feet of small intestines.  This time I'm going to do the chemo, beginning early in February.  Granulosa is so rare, and so slow growing, that for it to recur within three years is unheard of.  I turned 70 years old while in the hospital with this last surgery.The M.D.Anderson Cancer Center in Houston, Texas (1-800-392-1611) hooked me up with a woman from Louisana who also had granulosa cell - 13 years ago.  She did the chemo following the surgery and it has not returned.  She was very young, 32, when she had the cancer.  It tends to recur in older patients, I read someplace.  She has talked to roughly a dozen women, through the cancer center, and all of them, without exception, were having a recurrance of the granulosa.Martee from New Mexico martee Thu, 25 Jan 2007 00:00:00 GMT I just came upon this site and wanted to offer all of the women who are living with the challenges of ovarian cancer some positive news. I was originally diagnosed with 1st stage ovarian cancer in 1979, and had 4th stage ovarian cancer in 1992. It had spread into my colon, my liver and there was a nodule by my aorta. Just surviving the chemo treatments was demanding, but here I am---14 1/2 years later. Surviving even 4th stage metastatic o. cancer is possible! Catherine Ann Sun, 28 Jan 2007 00:00:00 GMT i too was told i had adult granulosa cell tumor cancer, i had it  removed july 2nd i too was told it was very rare mine was at stage 2 , they say  they got it all  and it had not spread but i did have a small spot on my  intestines which was also removed im told i have to go threw lose doses of chemo , yes i am having the same problem finding out info on this  they say it was contained in the overy they removed them  both i keep waking up with a sore throat  for the past 2 days im wondering if this has any thing to do  with this also . any info i cn  find out about  this is helpful would like to hear from  some one that has  gone threw  this and  wht how they are  doing now  thank u barbara freeatlast Tue, 24 Jul 2007 00:00:00 GMT Hi I was diagnosed in 1998 at 20 yrs old. I am on my 5th reoccurrance. They told me it was a slow growing tumor, but sometimes it can be aggressive. I had over 20 tumors removed during my 3rd surgery. I currently have about two dozen small pea size spots and two that are 2.5 cm. Of course my doctors says there is no treatement since the chemo did not work. Basically I have been on my own. I quit drinking soda for the most part. I quick eating sugar except for I had ice cream the other day after several months. I threw out the microwave because it kills all the nutrients in food, so you are just eating filler and am drinking alot of water, eating alot of veggies and taking alot of Vitamin C. Reading www.drlam.com web site. I may be crazy, it may or may not work, but I have nothing to loose. Kulbreez85 Thu, 26 Jul 2007 00:00:00 GMT Hi, I'm 30. I just had a surgery on 9/21/07 to remove a ~5cm cyst from right ovary. Just heard from the Doctor today during my post-op appointment that the pathology shows it's GCT. When I asked "is this a cancer?". My oncologist said "it could be..". I guess that means a Yes. ??Anyway, he scheduled me for another surgery in 2 weeks, this time he will take out the right ovary and tube as well. And he told me chemo is not needed. I'm not sure about that after reading all the posts here.A question: how were you diagonosed with GCT? is that by biopsy before surgery? I don't understand why my oncologist (who is also the surgeon) didn't check if it's cancer or not, then he could have removed the ovary during the first operation. I was very upset that I have to go through another operation in 2wks. But guess now I have no other option.I was diagnosed with thyroid cancer 2 years ago. The follow-up has been good and no reoccurrence so far. While I am grateful for that, now my ovary is having problem!!I'm still getting used to this bad news, I wish everyone well and "live your life to the fullest" as I read in one of the posts. sherry22 Wed, 26 Sep 2007 00:00:00 GMT Hi Sherry,Sorry to hear about your diagnosis. I was first diagnosed three years ago, and like you, am currently awaiting surgery and/or chemo treatment for a pelvic mass, 3.6 x 2.1.  which is the third outbreak of this disease.  The first tumour was on the right ovary, and removed.  I was told it was advisable to have the left ovary and omentum (it's like an apron of tissue sort of covering the front of your diaphram) removed as a precaution.  However I delayed, as although I was 55, I knew my remaining ovary was still giving out protective testosterone, and also I didn't like the idea of removing parts of me until there was a good reason.  (I mean, there's only so much they can remove before one starts to feel a little empty, hey?!)  However, two years later a 9 cm x 7 cm second tumour came on the left side, that could have come from the ovary, or migrated from the right side.  This was removed, as well as the omentum, which was found to contain cancerous nodules.  A year from then, I now have this pelvic mass, as mentioned above.  I think I might have an aggressive form of this disease (it's mostly described as lazy, apathetic), as my previous scan four months ago didn't show anything of concern. Apart from conventional treatment, I'm interested in alternatives... has anyone tried out the Rudolf Steine methods?  Or something called Escador (derived from mistletoe, has to be injected by a qualified MD)? (Apparently it has tumour reducing qualities, and boosts the immune system in warding off future attacks.  I've given up alcohol in favour of water, trying to alkelise my diet, and lose weight.  One tip I've heard is to be sure and get good long sleeps, as the immune system only starts to work after about 3 and a half hours in complete dark, and then needs another 6 hours to do its work.  You have to make sure you do sleep in complete dark, too, because the skin can detect light, even though you may be wearing a mask!Anyway, I wish everyone posting on this site the very best of luck.  There's some heart-rending stories, but we're all going to survive!  Believe it!   Jane f Mon, 22 Oct 2007 00:00:00 GMT Dear Catherine Ann,So happy for you to have overcome 4th stage GC, and thanks for posting your message.  You have given me hope.  I have inoperable tumours in pelvis, and doctors recommend 6 cycles of Paclitaxel and Carboplatin Chemo.  Am going to try something called Iscador first, though.  It's a (mistleto) injection treatment that stimulates the immune system to an extreme.  First advocated by Rudolph Steiner.  (It was noticed that when mistleto became parastic on a dying tree, the tree recovered as the invading species invigorated its immune system into new life.)  Even if this interim treatment wont hit the tumours, it's supposed to aid chemo treatment, and post chemo recovery.  Am praying you are still clear, Catherine.  Please post an update, if you can.  Jane x Purereporter Thu, 06 Dec 2007 00:00:00 GMT Hi Kulbreeze,  My heart goes out to you.  Only 20 years old and you've had such a rough time.  But one thing you said was wrong, if you don't mind me saying... that you are on your own - because you aren't!   I'll be happy to email with you for one, though I'm pretty ancient (57).  I have children in their thirties, though, and am on my third lot of chemo (very similar to you, small nodules all round the pelvic area) so we have one thing in common at least!  I live in the UK.  Anyway, I hope you are fairing well.  Have you read Bernie Siegel's books?  Love Medicine and Miracles is one - inspiring writing from a US surgeon.  Please give an update on how you are doing, if you can.  Be well, JaneX      Purereporter Thu, 06 Dec 2007 00:00:00 GMT Hi JaneX, Thanks for your words of encouragement. I mistyped my age, I was 30 at the time. I'm doing ok. I feel pain now and again and just trying to figure out what to do next. I lost my insurance when my husband came home from Iraq, so we are just hoping I can make it until we have insurance again. I had a goal to complete my education and I am hoping to graduate from College this May. Having to stop for cancer treatments prolong it, but I have a lot more people aware of my situation now and encouraging me. Some days are still harder than others. My husband lives in a state of denial and get aggravated when I try to talk about the what ifs, and my dad thinks that changing my diet will be a cure all and thinks I am not taking good enough care of myself. My mom never really says much and neither do either of my sisters, so that's why I feel alone. I usually end up crying by myself in the car or when everyone is asleep. I try to stay positive, but it is always on my mind. Take care and thanks Becca Kulbreez85 Sun, 06 Jan 2008 00:00:00 GMT Hi Kulbreeze, Think your Dad is right about the nutritional treatment of cancer.  Cancer thrives on sugars and muscous, and in an acidic body, so avoiding sugar and sugar substitutes, meats, alcohol, coffee, milk, yeasts, mushrooms, etc, can help.  People have cured themselves from advanced cancers by adopting these principles. Green juicing, and eating alkaline foods are best.  Have just replied on this subject to a message of Mariah's (on this message board), so check the thread if you are interested.  Also, you might be interested in www.stopdoingcancer.com.  It's a site run by a guy called Nick Kay who's got a really bad cancer, had lots of conventional treatment, refuses any more and is fighting it the nutritional way.  Exercise, oxygenating the body, drinking pure water, and finding ways to stay positive in spirit, all will help, too.  Best of luck to you, and take care,  Jane.   Jane f Sat, 09 Feb 2008 00:00:00 GMT Hello.  I just had a total hysterectomy 10 days ago and today went in for post op.  I had a mass on my left ovary which was later confirmed as Granulosa cell.  I was told I didnt need any more treatment.  I'm 50 years old.  I asked the Dr.'s office for anything to read on this cancer and was advised to go to WWW.  That was scary.  So I read that its a rare type of cancer?   Has anyone had the mass removed, un popped. and intact, with a total hysterectomy done?  I want to know if I should really go for more treatment or just let it be.  I know it depends on what I want, but I've always said that I wouldnt go for chemo, radiation, etc. if cancer ever struck me.  Hello.   I dont know what to do/think.  The only vice I have is this website.  Family dosent talk about it.Thank you SusieB Mon, 11 Feb 2008 00:00:00 GMT  On 2/11/2008 SusieB wrote:Hello.  I just had a total hysterectomy 10 days ago and today went in for post op.  I had a mass on my left ovary which was later confirmed as Granulosa cell.  I was told I didnt need any more treatment.  I'm 50 years old.  I asked the Dr.'s office for anything to read on this cancer and was advised to go to WWW.  That was scary.  So I read that its a rare type of cancer?   Has anyone had the mass removed, un popped. and intact, with a total hysterectomy done?  I want to know if I should really go for more treatment or just let it be.  I know it depends on what I want, but I've always said that I wouldnt go for chemo, radiation, etc. if cancer ever struck me.  Hello.   I dont know what to do/think.  The only vice I have is this website.  Family dosent talk about it.Thank youHi susie bI also have gct  i had a total hysterectomy in 2001, and chemo. Five years later i had a tumor debulking they removed 18 small tumors 13 were granulosa. Now almost 1 year to the day i have more tumors and waiting to see what the doctors are going to do either more surgery and treatment. The question is does chemo work or not? I had chemo the first time and it came back 5 years later the second time i did not have chemo and it came back 1 year later so the question remains does chemo work ? It is totaly up to you. It isn't an easy choice to make but i wish you well and god bless you if i can help you just let me know.                                                   diane    preckle Thu, 20 Mar 2008 00:00:00 GMT Hi DianeThank you for your response.  Boy, this is scary.  I'm so sorry you've had recurring tumors.  I feel in my heart of hearts that I will be in the same boat.  Have you ever had chemo or radiation?  Are you in pain?  Were you in pain before the discover of more tumors?  What were the symptoms?GOD Bless you Diane.  Lets keep in touch.Susie    SusieB Fri, 21 Mar 2008 00:00:00 GMT  On 3/21/2008 SusieB wrote:Hi DianeThank you for your response.  Boy, this is scary.  I'm so sorry you've had recurring tumors.  I feel in my heart of hearts that I will be in the same boat.  Have you ever had chemo or radiation?  Are you in pain?  Were you in pain before the discover of more tumors?  What were the symptoms?GOD Bless you Diane.  Lets keep in touch.Susie   Hi susieYes i did have chemo the first time about 5 years ago. My symptoms the first time was i had a lot of pressure when i got my period and some pain in my stomach but not much. Yes it is scary but they do say it is not aggresive,but still cancer is cancer and since it is a rare type that makes it even more scary.this time i am just really tired. So i am waiting on the surgeon to let me know what they are going to do.how do you feel? What were your symptoms? Well i hope you are feeing better from your surgery it takes a while to recoperate from it i hate to go through it again. Where do you live? I am in new jersey. I was 35 when i had my hysteretcomy, and now i am 42 . Take care talk to you soon.                                    diane    preckle Fri, 21 Mar 2008 00:00:00 GMT On 2/11/2008 SusieB wrote:Hello.  I just had a total hysterectomy 10 days ago and today went in for post op.  I had a mass on my left ovary which was later confirmed as Granulosa cell.  I was told I didnt need any more treatment.  I'm 50 years old.  I asked the Dr.'s office for anything to read on this cancer and was advised to go to WWW.  That was scary.  So I read that its a rare type of cancer?   Has anyone had the mass removed, un popped. and intact, with a total hysterectomy done?  I want to know if I should really go for more treatment or just let it be.  I know it depends on what I want, but I've always said that I wouldnt go for chemo, radiation, etc. if cancer ever struck me.  Hello.   I dont know what to do/think.  The only vice I have is this website.  Family dosent talk about it.Thank you Every case, of course, is different with the exception of one thing - most doctors don't have a lot of knowledge of this cancer and generally say "I don't know, I don't know what to do" etc. I was diagnosed at 31 had two surgeries that year. I did not have a total hysterectomy until Feb. 2005. My tumors have been very aggressive and I have never been in remission. They are supposed to be slow growing as in several years to return, but I have never been without them. I have lasted two years, but I take large amounts of vitamin C. I have not become a vegetarian like some have suggested, but I probably should have. Husband is a big meat eater and it makes it too hard to go meatless. Do all the research you can because its the only way to stay informed. Chemo did not work for me but Lupron shots kept the tumors from growing for four months before the turmors broke through. I currently have 5 tumors they measured in my last cat scan last April. I am due for another one, but I don't have insurance anymore so I am just having my blood levels and kidney/liver function checked. My levels have risen and I am aware of the one on the right because I can feel it. I must say it is much as the same as it was before my last surgery. I went in for surgery when the mild pain turned into stabbing pain because the fluid built up around the tumor was putting pressure on my right lung. The gutted me like a fish for the last debulking from the breast bone to the pelvic bone. My doctor's did not give me chemo to kill of any residual cells after surgery, not sure why because all other cancer surgeries it seems to be the protocol. My guess is they don't know what to use because when you have the more rare form there is less research. Pharmacuetical companies are not going to spending money where there is no large payback, so I have felt like I am in this fight alone and need to find my own treatments. Kulbreez85 Sat, 29 Mar 2008 00:00:00 GMT Hi DianeSorry to get back to so late.  I live in San Jose, CA.  My main symptom was bleeding.  That symptom stayed with me for 3+years.  I was tired all the time and my stomach got big especially the top of my stomach.  There wasnt much pain.  I just turned the big 50.  Since having the total hysterectomy I have pressure just about every time I urinate.  I hope it's just a part of the whole surgery...as you mentioned you had pressure. Sigh.  Did you have a totoal hysterectomy or partial?  I am so happy to know this website is here and people like you to talk to.  Whats going on with you?  How are you feeling?  Hope to hear from you sooner than I got back to you.:0)  ~~~~~~ SusieOn 3/21/2008 preckle wrote: On 3/21/2008 SusieB wrote:Hi DianeThank you for your response.  Boy, this is scary.  I'm so sorry you've had recurring tumors.  I feel in my heart of hearts that I will be in the same boat.  Have you ever had chemo or radiation?  Are you in pain?  Were you in pain before the discover of more tumors?  What were the symptoms?GOD Bless you Diane.  Lets keep in touch.Susie   Hi susieYes i did have chemo the first time about 5 years ago. My symptoms the first time was i had a lot of pressure when i got my period and some pain in my stomach but not much. Yes it is scary but they do say it is not aggresive,but still cancer is cancer and since it is a rare type that makes it even more scary.this time i am just really tired. So i am waiting on the surgeon to let me know what they are going to do.how do you feel? What were your symptoms? Well i hope you are feeing better from your surgery it takes a while to recoperate from it i hate to go through it again. Where do you live? I am in new jersey. I was 35 when i had my hysteretcomy, and now i am 42 . Take care talk to you soon.                                    diane      SusieB Mon, 07 Apr 2008 00:00:00 GMT How you doing?  Have you had to go in again for surgery?  I assume that the cancer spread to your lungs after the first surgery?  In between the surgeries what was your most common symptom?  On 3/29/2008 Kulbreez85 wrote: On 2/11/2008 SusieB wrote:Hello.  I just had a total hysterectomy 10 days ago and today went in for post op.  I had a mass on my left ovary which was later confirmed as Granulosa cell.  I was told I didnt need any more treatment.  I'm 50 years old.  I asked the Dr.'s office for anything to read on this cancer and was advised to go to WWW.  That was scary.  So I read that its a rare type of cancer?   Has anyone had the mass removed, un popped. and intact, with a total hysterectomy done?  I want to know if I should really go for more treatment or just let it be.  I know it depends on what I want, but I've always said that I wouldnt go for chemo, radiation, etc. if cancer ever struck me.  Hello.   I dont know what to do/think.  The only vice I have is this website.  Family dosent talk about it.Thank you Every case, of course, is different with the exception of one thing - most doctors don't have a lot of knowledge of this cancer and generally say "I don't know, I don't know what to do" etc. I was diagnosed at 31 had two surgeries that year. I did not have a total hysterectomy until Feb. 2005. My tumors have been very aggressive and I have never been in remission. They are supposed to be slow growing as in several years to return, but I have never been without them. I have lasted two years, but I take large amounts of vitamin C. I have not become a vegetarian like some have suggested, but I probably should have. Husband is a big meat eater and it makes it too hard to go meatless. Do all the research you can because its the only way to stay informed. Chemo did not work for me but Lupron shots kept the tumors from growing for four months before the turmors broke through. I currently have 5 tumors they measured in my last cat scan last April. I am due for another one, but I don't have insurance anymore so I am just having my blood levels and kidney/liver function checked. My levels have risen and I am aware of the one on the right because I can feel it. I must say it is much as the same as it was before my last surgery. I went in for surgery when the mild pain turned into stabbing pain because the fluid built up around the tumor was putting pressure on my right lung. The gutted me like a fish for the last debulking from the breast bone to the pelvic bone. My doctor's did not give me chemo to kill of any residual cells after surgery, not sure why because all other cancer surgeries it seems to be the protocol. My guess is they don't know what to use because when you have the more rare form there is less research. Pharmacuetical companies are not going to spending money where there is no large payback, so I have felt like I am in this fight alone and need to find my own treatments. Hello,  SusieB Mon, 07 Apr 2008 00:00:00 GMT Hello  -  are you still around??   Are you still working on Granulosa Cell Research?Thank you ~~Susie   SusieB Mon, 07 Apr 2008 00:00:00 GMT hi susie glad to hear from you i am glad you are feeling better. yes i did have a total hysterectomy about 5 years ago. well april 14th i start chemo. they are going to try chemo to shrink the tumors they will give me 2 months of chemo then a cat scan. if they shrink then probably 4 more months of chemo if they don't shrink then they will do surgery. i really don't want surgery but if i have to i have to. i just pray and i think i will be fine. well we just have to focus on the positive. it is weird because i don't feel sick you know i just feel tired. people look at me and say how do you feel because you don't look sick. the pressure is most likely from the surgery because i had pressure after and some leakage when i urinated i never felt quite empty i think it is from the catheter  it will go away. well hope to talk to you soon take care God bless                                                   diane preckle Mon, 07 Apr 2008 00:00:00 GMT  On 4/7/2008 SusieB wrote:Hello  -  are you still around??   Are you still working on Granulosa Cell Research?Thank you ~~Susie  The GCTF has actually started some exciting and groundbreaking research in the area of GCT but will only be able to continue this research with contributions from us, women with GCT,  those who love us, and any fundraising we may do. This is an orphan disease, so we must fight for ourselves and help support Sofi and the hard work she done over the years on behalf of women like us. Please, please, visit the website  www.gctf.org.nz to learn more about the research, make a contribution, or buy some beautiful jewelry in time for Mother's Day (every dollar supports GCTF research). Go to www.gctf.org.nz THANK YOU and good luck to you for good health!! Best, Sue  Susan1 Sat, 26 Apr 2008 00:00:00 GMT Hi All,I am taking care of my sweet, beautiful wife (age 46), first diagnosedwith a granulosa tumor in 2004, after more than four years of symptoms(bleeding), not taken seriously by a host of doctors.The tumor was confined to the left ovary, but the fancy gynecologicaloncologist/surgeon (trained at Harvard Medical School) and/or thehospital "lost" the staging test (the abdominal washings).  In person,on the first follow-up, he said it was Stage 1A, but when I got thesurgical notes/records the cytology report wasn’t extent, even thoughit claimed that fluids were gathered and sent to cytology.When pressed (later), he looked for the test, came back, shrugged hisshoulders, said it was lost, and added:  “What's the big deal; it isStage 1.  Why worry about it, the chance of it coming back over herlifetime is lower than 30 to 40%."Note, however, that his opinion about recurrences was decidedly grim: "If it comes back, she dies".  He didn't even believe in scans orInhibin blood markers because, from his point of view, there wasnothing to do anyway.This seemed unreasonable, so we had her OB/GYN do the follow-ups -- ultrasound tests every six months.Sadly, a growth showed up in Feb. 2007.  Long story short, we saw theoriginal surgeon and he said that he would open her up to remove themass, but he would not treat her if it were granulosa cell.  He wouldnot even order up a standard test to determine the receptor status ofthe tumor (estrogen positive/negative and/or progesteronepositive/negative), saying that there was no statistical evidence thathormone therapy worked (perhaps true now, but the information might beuseful later!).We went to NYC and a top expert operated on her, finding tumors in manylocations (one was butted against the large intestine, a few were onsome outer uterine fibroids, and a bunch were on her bladder).  Hesuggested BEP, and we scrambled to find another specialist in our cityto take the case (our insurance is not good for out-of-network, and NYChealth care (etc.)  is rather expensive, even though we were stayingwith friends).  Now our insurance does not cover ANY out-of-network visits or treatments.The new guy said BEP was too toxic (a nontrivial possibility of near-term fatal leukemia above four rounds of treatment).She started on Carboplatin and Paclitaxol (standard therapy for ovariancancers), and was doing well, tumor markers falling, toleratingtreatments very well.  But just prior to a second look surgery, themarkers rose, and, upon surgery another tumor was found.  Worse, thesurgeon took random samples off her abdominal wall and they all testedpositive for granulosa cell activity, meaning that it had spread,microscopically, to essentially everywhere in the immediate locale, ifnot further.  Fun stuff, no?!He said that the prognosis had "changed" and simply handed me thepathology report.  I replied, "You mean it is sobering?"  He said,"Yes, quite sobering."Six rounds of BEP followed.  A complete nightmare, but the markersfinally started to fall.  I looked into intravenous vitamin C (IVC),and started her on 100 grams, every other day, with various supplements(vitamin e, in different forms, and alpha lipoic acid, again indifferent forms).  Note that she has an implanted port.   The insurancedoes not cover the IVC, the compounding pharmacist screws us on hislabor,  but we are still trying it.Sadly, however, the Inhibin A has now risen three times in a row.  HerCA 125 is stable at 6-8, and we now await the Inhibin B marker,generally considered more reliable.My heart goes out to everyone suffering from this terrible disease. Cancer is much misunderstood.  Lance Armstrong (and his case/publicity)did some positive things, but the bottom line is that, for most celltypes, once you get it, it never goes away.  This is especially truefor granulosa cell tumors, as everyone here knows.  The emotionalstress is brutal, to put it mildly.A recent paper said that the standard term "indolent" was inappropriatefor granulosa cell tumors.  Relentless was more accurate.I'll be checking back in here, every week or so.  I have read moreoriginal papers on this tumor than virtually anyone has (I am ananalyst, by training).  If anyone has any questions or comments, pleasecontact me.Note that if the Inhibin B comes back elevated, the gynecological oncologist will treat her with Lupron.Note that all the chemo (especially the Cisplatin) produced severeperipheral neuropathy, a complete nightmare for us, at present.  Shealso has substantial hearing loss above 3kHz (again, from theCisplatin).Neurontin helps the pain a bit, but she can only take 300mg, thricedaily.  She tried 600mg, thrice daily, but was bumping into walls andbroke her small toe.  The doctor has now put her on some narcotics, soperhaps this will help.  She takes a host of supplements thatsupposedly will help speed recovery of the nerves in her fingers andfeet -- in particular, glutamine and acetyl l-carnitine.  Again, my heart goes out to all of you, victims and the familiesalike.  Any cancer is a truly bad scene, but the rare ones are brutalnightmares, in almost every respect. EarnestOne EarnestOne Tue, 13 May 2008 00:00:00 GMT Hi all, I am also the husband of a GCT patient. She was diagnosed stage 1 six years ago and had the ovary removed. Now it has returned and spread to two other parts of the abdomen. The gyn oncologist is strongly recommending HIPEC (Hyperthermic Intraperitoneal Chemotherapy, see: http://www.appendix-cancer.com/Peritoneal%20Chemotherapy%20a ) treatment. HIPEC is an experimental treatment, but apparently it's already making survivors of certain kinds of cancers where there were none before. We're told GCT is an excellent candidate for this treatment and there's a hospital nearby with the facilities to do it. Does anyone here have experience with HIPEC? We're wondering if the HIPEC alone might be effective, or if it should be used in combination with systemic chemo. The gyn oncologist is recommending both. Thanks John johnsc Thu, 05 Jun 2008 00:00:00 GMT  On 5/13/2008 EarnestOne wrote:Hi All,I am taking care of my sweet, beautiful wife (age 46), first diagnosedwith a granulosa tumor in 2004, after more than four years of symptoms(bleeding), not taken seriously by a host of doctors.The tumor was confined to the left ovary, but the fancy gynecologicaloncologist/surgeon (trained at Harvard Medical School) and/or thehospital "lost" the staging test (the abdominal washings).  In person,on the first follow-up, he said it was Stage 1A, but when I got thesurgical notes/records the cytology report wasn’t extent, even thoughit claimed that fluids were gathered and sent to cytology.When pressed (later), he looked for the test, came back, shrugged hisshoulders, said it was lost, and added:  “What's the big deal; it isStage 1.  Why worry about it, the chance of it coming back over herlifetime is lower than 30 to 40%."Note, however, that his opinion about recurrences was decidedly grim: "If it comes back, she dies".  He didn't even believe in scans orInhibin blood markers because, from his point of view, there wasnothing to do anyway.This seemed unreasonable, so we had her OB/GYN do the follow-ups -- ultrasound tests every six months.Sadly, a growth showed up in Feb. 2007.  Long story short, we saw theoriginal surgeon and he said that he would open her up to remove themass, but he would not treat her if it were granulosa cell.  He wouldnot even order up a standard test to determine the receptor status ofthe tumor (estrogen positive/negative and/or progesteronepositive/negative), saying that there was no statistical evidence thathormone therapy worked (perhaps true now, but the information might beuseful later!).We went to NYC and a top expert operated on her, finding tumors in manylocations (one was butted against the large intestine, a few were onsome outer uterine fibroids, and a bunch were on her bladder).  Hesuggested BEP, and we scrambled to find another specialist in our cityto take the case (our insurance is not good for out-of-network, and NYChealth care (etc.)  is rather expensive, even though we were stayingwith friends).  Now our insurance does not cover ANY out-of-network visits or treatments.The new guy said BEP was too toxic (a nontrivial possibility of near-term fatal leukemia above four rounds of treatment).She started on Carboplatin and Paclitaxol (standard therapy for ovariancancers), and was doing well, tumor markers falling, toleratingtreatments very well.  But just prior to a second look surgery, themarkers rose, and, upon surgery another tumor was found.  Worse, thesurgeon took random samples off her abdominal wall and they all testedpositive for granulosa cell activity, meaning that it had spread,microscopically, to essentially everywhere in the immediate locale, ifnot further.  Fun stuff, no?!He said that the prognosis had "changed" and simply handed me thepathology report.  I replied, "You mean it is sobering?"  He said,"Yes, quite sobering."Six rounds of BEP followed.  A complete nightmare, but the markersfinally started to fall.  I looked into intravenous vitamin C (IVC),and started her on 100 grams, every other day, with various supplements(vitamin e, in different forms, and alpha lipoic acid, again indifferent forms).  Note that she has an implanted port.   The insurancedoes not cover the IVC, the compounding pharmacist screws us on hislabor,  but we are still trying it.Sadly, however, the Inhibin A has now risen three times in a row.  HerCA 125 is stable at 6-8, and we now await the Inhibin B marker,generally considered more reliable.My heart goes out to everyone suffering from this terrible disease. Cancer is much misunderstood.  Lance Armstrong (and his case/publicity)did some positive things, but the bottom line is that, for most celltypes, once you get it, it never goes away.  This is especially truefor granulosa cell tumors, as everyone here knows.  The emotionalstress is brutal, to put it mildly.A recent paper said that the standard term "indolent" was inappropriatefor granulosa cell tumors.  Relentless was more accurate.I'll be checking back in here, every week or so.  I have read moreoriginal papers on this tumor than virtually anyone has (I am ananalyst, by training).  If anyone has any questions or comments, pleasecontact me.Note that if the Inhibin B comes back elevated, the gynecological oncologist will treat her with Lupron.Note that all the chemo (especially the Cisplatin) produced severeperipheral neuropathy, a complete nightmare for us, at present.  Shealso has substantial hearing loss above 3kHz (again, from theCisplatin).Neurontin helps the pain a bit, but she can only take 300mg, thricedaily.  She tried 600mg, thrice daily, but was bumping into walls andbroke her small toe.  The doctor has now put her on some narcotics, soperhaps this will help.  She takes a host of supplements thatsupposedly will help speed recovery of the nerves in her fingers andfeet -- in particular, glutamine and acetyl l-carnitine.  Again, my heart goes out to all of you, victims and the familiesalike.  Any cancer is a truly bad scene, but the rare ones are brutalnightmares, in almost every respect. EarnestOne  Hello Earnest One  How is your wife?  I had the same sympton for 3+ years also...constant bleeding.  I had total hys. Jan 30th and since then my Dr. has me on Estrogen.  I've not had to endure chemo.  Your message is informative...thank you.  I sincerely hope she is doing better.  - Susie  SusieB Mon, 30 Jun 2008 00:00:00 GMT  On 4/7/2008 preckle wrote:hi susie glad to hear from you i am glad you are feeling better. yes i did have a total hysterectomy about 5 years ago. well april 14th i start chemo. they are going to try chemo to shrink the tumors they will give me 2 months of chemo then a cat scan. if they shrink then probably 4 more months of chemo if they don't shrink then they will do surgery. i really don't want surgery but if i have to i have to. i just pray and i think i will be fine. well we just have to focus on the positive. it is weird because i don't feel sick you know i just feel tired. people look at me and say how do you feel because you don't look sick. the pressure is most likely from the surgery because i had pressure after and some leakage when i urinated i never felt quite empty i think it is from the catheter  it will go away. well hope to talk to you soon take care God bless                                                   dianeHi Diane  = Checking in with you.  How are you doing?   - susie  SusieB Mon, 30 Jun 2008 00:00:00 GMT Susie,Sorry to hear about anyone, but glad you chimed in.Delaymy wife for a moment. UNLESS I haven't woken up yet (possible) andmisread your note (always possible), I read that the Dr. put you onEstrogen!I now looked back at your note.  You do not say that the pathology was granulosa cell cancer.  I can only assume this from the forum.  But these tumors PRODUCE estrogen.  Did the doctor do an estrogen/progesterone receptor test on the surgical sample of tissue?  If so, did you SEE the report.Estrogen worries me, although I don't want you to get alarmed, as surely you are in reasonable hands. As for my wife, she is just hanging in there, with a huge psychological hit a few weeks ago.  After nine months of chemo and two operations for two recurrences, and hearling loss, and extreme peripheral neuropathy, her numbers are going up, at a steep climb.  She is stage four, with microscopic cells coating her entire abdomenal wall, at minimum, as of last August, when they did the last surgery, in between the two treatments.  Carboplatin/Taxol was first (it was working then failed), then the surgery (something that helps survival, as it stimulates the immune system), then five hellish months of BEP (Bleomycin, Etoposide, and cisPlatin).  The numbers fell to great levels, but the "good news" only last two months.  She can't have any more chemo any time soon.  Six rounds of BEP for an originally 115 lb 5' 3 1/2 inch woman is bit much.  She's been down below 100 lbs for over 9 month.. Now she is on some progesterone-type drug (her receptor status test, after the second operation was estrogen negative progesterone positive).  This is not a zero/one test, they count the relative proportion of receptors on the cell and have relatively arbitrary cutoffs for saying positive or negative.Worse!  Chemo can change the status of the receptor test!Now, as you surely know, these tumors PRODUCE estrogen.  That is why I was a bit skeptical about your receiving that drug.  But surely there are good reasons. My wife's prognosis is truly poor, but I have her on intravenous vitamin C, upped the dosage to 125 grams every other day, with a bunch of supplements to help potentiate its action.  Even now some oscillating magnetic fields while doing the C infusions (a paper published in Journal of Orthomolecular Medicine -- Linus Pauling's startup mag --... a paper published in 2001 has the basis for this, something that is online, as that Journal has archives that are free for the period).I am working on other things, best left unsaid for now, but I will point people to the papers in a week or two.  A completely new therapy, with great promise, not for a total cure, but for either prolonging lives or keeping things in check.  But one must wear electrodes 22 hours a day and be plugged into a circuit with a large portable battery.  Novacure is the company, out of Israel, that is doing Phase III trials now on the super-nasty glioblastoma brain tumor (what Kennedy has), but the Novacure technology has been around for a while.  Not sure if Kennedy is part of their trials. Long story short, the Novacure technique can be used, in principle, for any cancer (has shown efficacy in cultures and in rats for a variety of cell types, although certainly nobody tried out granulosa cell cancer!  YET).Key to the whole thing is that it is a NONTOXIC regimen.  Only alternating capacitively coupled currents.  An electric field is set up in your body, at very high frequencies (100 to 300 kilohertz).  It is a type of resonance effect, which breaks the dividing cells apart, just when the final phase of cell division is hapenning.  But the cells must be aligned with the field, and they are, in reality, aligned randomly.  Hence you have to have multiple sets of electrodes, placed all over, and then they switch between them, in sequence, to obtain a high overall hit rate.Enough for now, about that?!!My wife's peripheral neuropathy and the nasty drugs she takes to control it, have her quite unsteady.  She broke a toe a month ago, bumping into a wall.  Just three days ago, as she was almost back to moving better again, but bumped into another object and broke another toe!Can't wear socks without pain.  Can't wear shoes without terrible discomfort.  But still alive, and hope that her husband (me) will figure this thing out (hint to others to look into the vitamin C and, most of all, that Novacure technology, although I will post the papers and links in a few days to a week).  Trials are soon starting for breast cancer and this really looks promising.  NO drugs are involved other than some topical cream under the electrodes, as sometimes one gets a rash.OOPs.. My wife just fell down the stairs, going slow, and being careful.  SHe yelled out, but is okay, albeit with a big bruise on her elbow.  Must get back to my main job at present:  Being a good husband.  Not bad work, although it pays nothing, but I like the people I work with (my wife)!Best wishes to all, obviously, and deeply and with EVERY hope that EVERYONE finds some pleasure if not piece in their lives until this thing is a museum relic, only found in the ancient textbooks of medicine.                        EarnestOne Mon, 30 Jun 2008 00:00:00 GMT Hi Susie, how are you doing? i am on my third round of chemo. i start my third round on monday july 7th my birthday. i do monday,tuesday and wednesday then i have a cat scan to see how it is progressing. last cat scan i had it showed a mild decrease in the tumors. that was great news. so the doctor told me that this might be my last treatment and then they will just watch for now. but i think if the chemo is shrinking the tumors then why not 1 or 2 more treatments.well i am getting ready to go on disability from work( i tried) i did 3 months while on chemo and i just can't do it anymore i am to tired. my job is very physical. i work in a kitchen in a nursing home. so i think i will take a few months off  to rest. well that is my story for now. write back and let me know how you are doing. take care and hope to hear back from you soon. God bless, diane preckle Sat, 05 Jul 2008 00:00:00 GMT Hey Diane, I'm doing well.  I've got all the damned symptoms again but I'm sure it's not a reacurrence...it's too soon.  I hope your cat scan shows no flippin tumors at the time of appointment.  If by chance they can still 'see' it then why not do a couple more rounds to shrink it more...I agree with you.  I pray that you can financially hang in there.  If you can , take the time to recover and go out and do things!!  Things I've never done, I'm doing now. Simple things like camping.  Let me know how the cat scan turns out.  You're in my prayers friend.   Susie  On 7/5/2008 preckle wrote:Hi Susie, how are you doing? i am on my third round of chemo. i start my third round on monday july 7th my birthday. i do monday,tuesday and wednesday then i have a cat scan to see how it is progressing. last cat scan i had it showed a mild decrease in the tumors. that was great news. so the doctor told me that this might be my last treatment and then they will just watch for now. but i think if the chemo is shrinking the tumors then why not 1 or 2 more treatments.well i am getting ready to go on disability from work( i tried) i did 3 months while on chemo and i just can't do it anymore i am to tired. my job is very physical. i work in a kitchen in a nursing home. so i think i will take a few months off  to rest. well that is my story for now. write back and let me know how you are doing. take care and hope to hear back from you soon. God bless, diane  SusieB Sun, 06 Jul 2008 00:00:00 GMT  On 6/5/2008 johnsc wrote:Hi all, I am also the husband of a GCT patient. She was diagnosed stage 1 six years ago and had the ovary removed. Now it has returned and spread to two other parts of the abdomen. The gyn oncologist is strongly recommending HIPEC (Hyperthermic Intraperitoneal Chemotherapy, see: http://www.appendix-cancer.com/Peritoneal%20Chemotherapy%20a ) treatment. HIPEC is an experimental treatment, but apparently it's already making survivors of certain kinds of cancers where there were none before. We're told GCT is an excellent candidate for this treatment and there's a hospital nearby with the facilities to do it. Does anyone here have experience with HIPEC? We're wondering if the HIPEC alone might be effective, or if it should be used in combination with systemic chemo. The gyn oncologist is recommending both. Thanks JohnHi John,Thanks for posting your information.  How is your wife?  Did you go ahead with this new treatment?  I'm a Christie Hospital, Manchester UK, patient with GCT (non-operable, peritoneal spread) who's turned down conventional chemo up to now, but kept asking my consultant for localised chemo treatment.  He's a top man there, but always said it not effective as it wont get the cells elsewhere in the body.  But broadcast chemo wrecks the immune system, and weakens the body, so that even if a few cells remain after first cycle of treatment, it's likely to take hold of a body much less well able to resist, the second and subsquequent cycles.  Seems to me far better to try and destroy discernible tumours locally, as they appear, whilst keeping the rest of the body strong.   Have you heard, also, of Simoncini in Rome? Hyperthermia; hyperbaric treatment; viscum; Anti-vast? Best wishes,Jane Jane f Fri, 22 Aug 2008 00:00:00 GMT On 8/22/2008 Jane f wrote: On 6/5/2008 johnsc wrote:Hi all, I am also the husband of a GCT patient. She was diagnosed stage 1 six years ago and had the ovary removed. Now it has returned and spread to two other parts of the abdomen. The gyn oncologist is strongly recommending HIPEC (Hyperthermic Intraperitoneal Chemotherapy, see: http://www.appendix-cancer.com/Peritoneal%20Chemotherapy%20a " target="_blank" rel="nofollow">http://www.appendix-cancer.com/Peritoneal%20Chemotherapy%20a " target="_blank" rel="nofollow">http://www.appendix-cancer.com/Peritoneal%20Chemotherapy%20a " target="_blank" rel="nofollow">http://www.appendix-cancer.com/Peritoneal%20Chemotherapy%20a ) treatment. HIPEC is an experimental treatment, but apparently it's already making survivors of certain kinds of cancers where there were none before. We're told GCT is an excellent candidate for this treatment and there's a hospital nearby with the facilities to do it. Does anyone here have experience with HIPEC? We're wondering if the HIPEC alone might be effective, or if it should be used in combination with systemic chemo. The gyn oncologist is recommending both. Thanks JohnHi John,Thanks for posting your information.  How is your wife?  Did you go ahead with this new treatment?  I'm a Christie Hospital, Manchester UK, patient with GCT (non-operable, peritoneal spread) who's turned down conventional chemo up to now, but kept asking my consultant for localised chemo treatment.  He's a top man there, but always said it not effective as it wont get the cells elsewhere in the body.  But broadcast chemo wrecks the immune system, and weakens the body, so that even if a few cells remain after first cycle of treatment, it's likely to take hold of a body much less well able to resist, the second and subsquequent cycles.  Seems to me far better to try and destroy discernible tumours locally, as they appear, whilst keeping the rest of the body strong.   Have you heard, also, of Simoncini in Rome? Hyperthermia; hyperbaric treatment; viscum; Anti-vast? Best wishes,Jane Hi Jane, Thanks for checking in. My wife is doing well. We've learned a lot since I made that last post, and it's almost humorous that we were even considering something like HIPEC. I think we've talked with nine different oncologists with different specialties and the prevailing opinion has been that chemo is best saved until absolutely needed since a) there's a quite a bit of research that shows it's not effective (and even harmful) with GCT due to the slow and unpredictable growth and b) if NOT 100% effective then it's likely to leave chemo-resistant cells making things more challenging down the road, as you said. Instead, she is doing 7.5mg of Lupron Depot every three weeks in an effort to reduce FSH levels to near-zero. Since granulosa tumor cells retain some of their original function, FSH is thought to be the primary "food" for its growth. We're also carefully monitoring Inhibin B levels, also every three weeks (just before the Lupron shot). So far, so good. > Have you heard, also, of Simoncini in Rome? Hyperthermia; hyperbaric treatment; viscum; Anti-vast? Hyperthermia, yes, but the others, no. Are you trying any of these? I'll definitely do some homework. Thanks for the pointers! -- John johnsc Sat, 23 Aug 2008 00:00:00 GMT I just want to tell everyone here that is posting, "Thank you".  It's discouraging information sometimes but comforting to know that others are going through the same circumstances.  I'm 41 and was diagnosed stage IIIA granulosa cell in February.  Took everything out and had 3 rounds of BEP ending in May.  2 weeks ago Inhibin A jumped to 187, a week ago..350. PET scan shows tumors again on my pelvic wall....so I'm going into surgery Wed and this time they will do some sensitiviy chemo tests to see what kills it.  Most likely to start Taxol CP.  GCT is supposed to be slow growing but mine is pretty agressive with a mitotic rate of 75/1.    Does anyone posting have a high mitotic rate as well?? Shelly Shellyc Sun, 31 Aug 2008 00:00:00 GMT