CancerCompass message board discussion started by Angel123 on 5/11/2005 http://www.cancercompass.com/message-board/message/all,2052,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Recently I have be diagnosed with Granulosa cell tumor of the ovary. I would like to hear and talk to other people who have this same type of cancer. This seems to be a very rare type of ovarian cancer. Please respond so we can help each other. So far I have only had one ovary removed. I have been told that a total hysterectomy should follow. I would really like to hear from others. Thanks, Ls Angel123 Wed, 11 May 2005 00:00:00 GMT I am 52 years old and I have had this cancer since 1994. I am a four-time survivor. The first tumor I had in 1987 was benign. I had it removed with a total hysterectomy. The Doctor said I was "good to go" no more problems. What he did not tell me was Granulose Cell Tumors could come back malignant. Mine did, with a ruptured 11-centimeter tumor in my pelvic area. I had hemorrhaged, had 7 blood transfusions and surgery to remove it, followed by 6 mos. of aggressive chemo. Hair loss, sick the works. The chemo did no good. The cancer came back on my Liver in 1999. I had a liver ablation (probe into the liver burns off the cancer). Followed by chemo again, the same works, had trouble breathing and sick, very sick. The cancer did not do any good. In 2002, more cancer on my liver (the doctors don't know if it was there in 1999 and they missed it or it was a new growth. I had a complete liver resection in 3/2002. By 10/2002 it showed up in by abdomen and liver again. We watched its slow growth knowing my "cure" is surgery to remove it. I feel great have no symptoms in the mean time. On March 21, 2005 after seeing the Doctor a few weeks earlier and feeling great. CT scan showed the cancer continued to grow slowly; I fainted, dizzy and went to the ER, the CT showed bleeding from the tumors. I had blood transfusions to get me up to speed and then had surgery by my Gynecologist Oncology Doctor and my Liver Surgeon Specialist. They remove my spleen (tumor attached there) part of my colon (tumor attached there too) and part of my liver along with the other tumors. I came through this surgery great! I feel wonderful. My strength is in the Lord; I could not survive this nasty cancer without him! I work, have a husband at home (medical disability) one daughter in college and two other grown children (3 grandchildren). I have a lot to live for and I intend to keep going. Having read this message board is enlightening. I did not know the granulose spread to the lungs. What is that "cure"? Scary stuff. We press on! Keep the faith and find joy everyday ladies. Melody's Mom Melodys Mom Sun, 22 May 2005 00:00:00 GMT Hi, I am an old hand at this cancer. Have the hystorectomy. I live in Atlanta, Georgia, what part of the country are you in? My doctor is wonderful. I have been fighting this since 1994, I am a 4 time survivor. Ask me what you want to, I will be gland to help you if I can. Melodys Mom Sun, 22 May 2005 00:00:00 GMT Hi, I am glad to have heard from someone in my shoes. Do you know if this type of cancer always comes back or is it a rare thing? How did you know you had it back for the second time? Did your body give you any warning signs? Also did you notice your hormones were always out of whack? Did you get a sensation when your bowel or bladder were full? Please write back and ask me any questions you would like to know. thank you so much for replying. Take care. Angel123 Thu, 09 Jun 2005 00:00:00 GMT Hi It sounds like you have had a terrible time with your illness. What stage did they find the cancer originaly.. was the cancer confined to an ovary or did it rupture to your abdomin? I have heard that if rupture occurs then it is easily spread. I hope that is the end of it for you. It sounds like they are keeping a good eye on it.. Please keep in touch.. god bless Angel123 Thu, 09 Jun 2005 00:00:00 GMT Yes, this is a rare type of ovarian tumor and the advise to have a full hysterectomy is probably good advise. I had a hysterectomy due to dysfunctional bleeding (age 46). After a year of non success on the pill,(sonogram was negative for tumors) I elected to have a hysterectomy & leave the ovaries in. A very good friend (a life saver!) convinced me otherwise & I changed the surgery a few days before to include the ovaries and low and behold pathology discovered the granulosa tumor. Two months later I had a pelvic wash & biopsy which was negative. (Discomfort was worse with this 2nd surgery). I do feel very fortunate that God changed my path for an early discovery. If I left the ovaries in, symptoms would not have shown up for another 2 years & by them it would have been in stage 3 or 4. I have an "inhibin blood test" every year and a mammogram every 6 months. I went on low dose premarin to help with the sudden internal combustion like hot flashes. Good luck with everything. I believe this to be the lesser of the evils of ovarian tumors (a small comfort). Schucj Mon, 13 Jun 2005 00:00:00 GMT Hi, Melody's mom; Thanks so much for your message. Right now I am so depressed in my recurrent GCT treatment, I feel so distressed. I am in AL, going to UAB, where supposedly the best in the south. But I do not think they have done a good job on my case. I want to have another opinion. Thanks a million, Best wishes, Grace Gracelaqiu Mon, 27 Jun 2005 00:00:00 GMT Hi, Melody's mom; Thanks so much for your message. Right now I am so depressed in my recurrent GCT treatment, I feel so distressed. I am in AL, going to UAB, where supposedly the best in the south. But I do not think they have done a good job on my case. I want to have another opinion. Thanks a million, Best wishes, Grace Gracelaqiu Sun, 03 Jul 2005 00:00:00 GMT Hi! I also was diagnosed with this type of cancer and had my left ovary and tube removed in January. I have been seeing a fertility specialist along with a gyn oncologist. They have given me some good information about the cancer but it seems that GCT is pretty mysterious in its ways-and there isnt as much information about it as I would like. It would be wonderful to talk to others who have or have had this type of cancer also. I have had a really hard time breathing since my surgery have you had any trouble with this? sammie Sammieap Sun, 07 May 2006 00:00:00 GMT I was diagnosed with Granulosa cell tumor and have done a lot of question asking and seeking information. This is what I have learned. Granulosa cell tumors of the ovary many times are brought on by fertility drugs especially chlomid and drugs like this. Any drug that effects your hormone levels. Chemotherapy isnt as effective on granulosa cell tumors as it is on other cancers (sometimes does not work) It is really important to have an oncologist or gyn doctor follow you and your hormone levels and your progress to make sure it doesnt come back once it is removed. My oncologist has recommended a catscan with dye or a petscan to get a good baseline for where I am at. so he has something to go on in the future. I have been told that if your tumor was removed without rupture and was removed appropriately then there is a good chance this type of cancer will not resurface (but there are no guarentees) If like me your tumor ruptured or was cut in half when removed the doctors recommend staging-this tells them what stage your cancer is at at this point in time. 1 & 2 chemo not necessary 3,4,5 some type of chemo or surgery or both needed to extinguish the cancer. I am wondering still what symptoms other have had with this cancer. I have had everything from migraines, to trouble breathing, abd pain, bowel problems. If you can please reply Thanks Sammie Sammieap Mon, 08 May 2006 00:00:00 GMT I have just joined this site and came across your message. I had granulosa cell cancer and want to know how you are doing. I had surgery and intraperitoneal chemottherapy in 2003 carolinagirl Fri, 14 Sep 2007 00:00:00 GMT  On 9/14/2007 carolinagirl wrote:I have just joined this site and came across your message. I had granulosa cell cancer and want to know how you are doing. I had surgery and intraperitoneal chemottherapy in 2003 can u tell me about ur disease alittle more and ur treatment please i wanna know if intrapertoneal chemo is workig or not ? and how did u feel after u start the treatment and where did u do it , what did they tell u about this treatment ? thank u so much  hussah Fri, 19 Sep 2008 00:00:00 GMT