CancerCompass message board discussion started by Jane f on 3/11/2008 http://www.cancercompass.com/message-board/message/all,21891,0.htm Thu, 21 Aug 2008 00:00:00 GMT Thu, 21 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi,Hi,   Can anyone with Granulosa please give me feedback on their situation with chemotherapy.  My UK oncologist prescribes Paclitaxel (Taxol) and Carboplatin for the metasticisng tumours in my pelvis (which are spreading to my liver).  But according to trials, there's only about a 17th month break before progression (the cancer beginning again).  And they've told me it wont get rid of the tumours altogether, either.   I don't feel in a good place right now!  Been keeping very healthy, and now the prospect of throwing all that away for a treatment that may make me sicker in the long run.  Even the pamphlet the doctor's given explaining the treatment warns it can cause a second cancer to begin!  Not exactly encouraging.  Good health and best wishes to everyone ,Jane       Jane f Tue, 11 Mar 2008 00:00:00 GMT  On 3/11/2008 Jane f wrote:Hi,Hi,   Can anyone with Granulosa please give me feedback on their situation with chemotherapy.  My UK oncologist prescribes Paclitaxel (Taxol) and Carboplatin for the metasticisng tumours in my pelvis (which are spreading to my liver).  But according to trials, there's only about a 17th month break before progression (the cancer beginning again).  And they've told me it wont get rid of the tumours altogether, either.   I don't feel in a good place right now!  Been keeping very healthy, and now the prospect of throwing all that away for a treatment that may make me sicker in the long run.  Even the pamphlet the doctor's given explaining the treatment warns it can cause a second cancer to begin!  Not exactly encouraging.  Good health and best wishes to everyone ,JaneHi Jane:I was dx 14 years ago with GCT.  I did have chemo for 3 rounds.  It was very exhausting and not a real fun experience, but have not had a recurrance so far.  Who knows if the chemo explains this or if I would not have recurred anyway.  I can only speak from my experience.  I am scared of this disease as it affects everyone so differently and there is no real protocal.  I go for my blood work now once a year, and in April it is my time.  I am already very nervous.  As everyone knows this cancer can recur very late.         newportgirl Thu, 13 Mar 2008 00:00:00 GMT Hi Newportgirl,Thanks for responding to my enquiry about chemo.  Am very glad you have been clear for 14 years.  That's wonderful news.  Without going back to look at your message, I can't remember if you've said what kind of chemo you had, but if you didn't, would appreciate knowing!  Fourteen years ago I suspect a stronger chemo combination with equivalent worse side effects was in use.  These days they give one that claims to be less harmful overall, but I wonder whether it is also weaker and might be less effective.  In any case, chemo doesn't seem so effective on metastices, which is what I have: the cancer cells change, and become more resistant, I am told.   Granulosa does have the reputation for revisiting in the long term, as you say, but then, almost all 'healthy' people are walking around with potential cancer cells in their bodies.  Keeping healthy - physically and emotionally -  should keep the disease at bay!  It must be an awfully tense time for you, building up to an annual test, but maybe there's a good side to it too... I think we are luckier than some people because the constant threat of cancer is always a reminder of how lucky we are to be alive!  That said,  I've been 'rediagnosed' three times now, and would be very glad if I never have to go through it again.  But am alive, and that's the best thing!I'd appreciate hearing more of your story - whether your chemo followed surgery immediately, etc.  Good luck in April, and very best wishes to you,Jane       Jane f Fri, 14 Mar 2008 00:00:00 GMT On 12/28/07 I had a TAHBSO for what I thought was uterine cancer . . it turned out that a few days prior to my surgery the transvaginal ultrasound showed issues in my ovary.  It turned out I had a non malignant uterine cancer no chemo required, BUT also had Granulosa Ca of the ovary.  The ovary was the size of a large orange, and inside tha the tumour was the size of a kiwi fruit.  Because it was solely contained inside the ovary and all peritoneal washings were clean as were all lymph nodes, I do not have to have chemo, the OB-GYN said the surgery was the cure. HOWEVER I too go back every 3 months for bloodwork and every 6 for a pet scan  He told me granulosa is a rare cancer,very slow growing, and that I had mine probably 5-6 yrs. He also said it is fairly resistant to chemo, and sometimes does re-occur. He said had the washings of the body cavity been positive, a lymph node been positive, or the other ovary been affected, I would have to go through chemo. He did mention FU5, Cisplatin and another I can't recall. I would follow your doctors guidance, and if you have doubt, even one inkling, always go for a second opinion. Good luck to both of you. parrotbayRN Sat, 22 Mar 2008 00:00:00 GMT  On 3/22/2008 parrotbayRN wrote:On 12/28/07 I had a TAHBSO for what I thought was uterine cancer . . it turned out that a few days prior to my surgery the transvaginal ultrasound showed issues in my ovary.  It turned out I had a non malignant uterine cancer no chemo required, BUT also had Granulosa Ca of the ovary.  The ovary was the size of a large orange, and inside tha the tumour was the size of a kiwi fruit.  Because it was solely contained inside the ovary and all peritoneal washings were clean as were all lymph nodes, I do not have to have chemo, the OB-GYN said the surgery was the cure. HOWEVER I too go back every 3 months for bloodwork and every 6 for a pet scan  He told me granulosa is a rare cancer,very slow growing, and that I had mine probably 5-6 yrs. He also said it is fairly resistant to chemo, and sometimes does re-occur. He said had the washings of the body cavity been positive, a lymph node been positive, or the other ovary been affected, I would have to go through chemo. He did mention FU5, Cisplatin and another I can't recall. I would follow your doctors guidance, and if you have doubt, even one inkling, always go for a second opinion. Good luck to both of you.Hi all of you, I have been sick in Malign Granulosacellstumor since 1994 and since the end of 1999 also have metastasis in both of my lounges. Since the beginning of 2000 I have got very many treatments , several courses with cytostatika and also three different treatments with hormones. Last summer I did a second opinion and got some new suggestes for trying. That doctor said that even if the metastasis now are bigger than from the beginning he is sure that all treatment have been for my help. Lucky, my body still handle all of it so for the moment we are trying with Caelyx.  I am going for a new CT in april to see the effects.I don´t know anyones result so Ijust have to hope.All the time since I got my metastasis I think that the best thing still is that they are doing something for me even if the treatment for the moment is tough it gives me a better quality of life.Don´t forget that all of us are different people and do what you believe is the best for you. Best luck to all of you.Ninnie   Ninnie Fri, 28 Mar 2008 00:00:00 GMT  On 3/28/2008 Ninnie wrote: On 3/22/2008 parrotbayRN wrote:On 12/28/07 I had a TAHBSO for what I thought was uterine cancer . . it turned out that a few days prior to my surgery the transvaginal ultrasound showed issues in my ovary.  It turned out I had a non malignant uterine cancer no chemo required, BUT also had Granulosa Ca of the ovary.  The ovary was the size of a large orange, and inside tha the tumour was the size of a kiwi fruit.  Because it was solely contained inside the ovary and all peritoneal washings were clean as were all lymph nodes, I do not have to have chemo, the OB-GYN said the surgery was the cure. HOWEVER I too go back every 3 months for bloodwork and every 6 for a pet scan  He told me granulosa is a rare cancer,very slow growing, and that I had mine probably 5-6 yrs. He also said it is fairly resistant to chemo, and sometimes does re-occur. He said had the washings of the body cavity been positive, a lymph node been positive, or the other ovary been affected, I would have to go through chemo. He did mention FU5, Cisplatin and another I can't recall. I would follow your doctors guidance, and if you have doubt, even one inkling, always go for a second opinion. Good luck to both of you.Hi all of you, I have been sick in Malign Granulosacellstumor since 1994 and since the end of 1999 also have metastasis in both of my lounges. Since the beginning of 2000 I have got very many treatments , several courses with cytostatika and also three different treatments with hormones. Last summer I did a second opinion and got some new suggestes for trying. That doctor said that even if the metastasis now are bigger than from the beginning he is sure that all treatment have been for my help. Lucky, my body still handle all of it so for the moment we are trying with Caelyx.  I am going for a new CT in april to see the effects.I don´t know anyones result so Ijust have to hope.All the time since I got my metastasis I think that the best thing still is that they are doing something for me even if the treatment for the moment is tough it gives me a better quality of life.Don´t forget that all of us are different people and do what you believe is the best for you. Best luck to all of you.Ninnie  Hi, everyone! I am so glad to have founnd fellow GCT patients other than myself. I felt like I was the only one. I,too, was diagnosed almost 25 yrs. ago. The tumor was totally encapsulated I was told and the size of a grapefruit on one ovary. They removed it and said I needed no further treatment except to see my gyn @ 6 mos. Well, 22 yrs. later when I went for a routine check-up at a new internist, I complained of being a little winded when excersizing , so she ordered up a chest x-ray. One thing led to another and after much investigating discovered the "encapsulated" tumor had metastisized to my left lung. I then underwent a needle biopsy of the lung and after I healed from that, I underwent a total hysterectomy. I followed that with rounds of chemo. It has been 2 yrs.now and the tumors in my lung have stayed "stable". Sure wish there were some kind of help out there for us that was more definitive and hopeful. Right now, it just feel great knowing I am not the only one. We need to stay in touch and share any and all info! Hang in there, ladies!  pammyjean Sun, 13 Apr 2008 00:00:00 GMT Thank you all for sharing your experiences.  I received the results yesterday that I have a granulosa cell ovarian cancer.  This was found in the 6cm cyst removed almost a week ago.  I go see the GYN Oncologist on Monday to start figuring things out.  Any suggestions of questions to ask would be most appreciated.Ann AnnaBannana Sat, 26 Apr 2008 00:00:00 GMT