CancerCompass message board discussion started by Angel123 on 6/9/2005 http://www.cancercompass.com/message-board/message/all,2225,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Would sure like to hear from someone who has been diagnosed with this granulosa cell tumor. who has not had a reoccurance. Is there any positive stories.I can grasp some hope from.. Does this mean 100% it will reoccur??? Angel123 Thu, 09 Jun 2005 00:00:00 GMT Hi! Would love to talk to someone going through similar problems - I have found it very challanging to get information about granulosa cell tumors. I was recently diagnosed with GCT in Jan 2005. Had a 9cm begnin mass removed along with one ovary. I was initially told everything was fine. At my follow up appointment after the surgery - I found out that the final pathology report came back with a problem. They found a 4mm stage 1 gct tumor deep within the ovary - all dr's said I should be fine and they would just watch me carefully for any changes. I know I should be happy - but there's that cloud of unknown that seems to be hanging over me. Wish there was a way to know for sure if there was anyother spots- or a way to know if the other ovary was OK. They don't seem to be in a hurry to do a total hysterectomy - at only 43 they said there is no hurry but would do it when I am ready. I am undecided if I should push to have it done. Hate to remove healthy organs and deal with a whole new set of issues with menopause- but on the other hand then I would at least know there is nothing else hanging around. Not sure I want to wait until something gets big enough for doctors to find. Would love to hear peoples opinions/experiances with GCT and what action their doctors have taken in the early stages. Everything I have read talks about the slow reoccurance rate (up to 15 - 20 years)- but it seems like so little is known or published about this type of cancer. Is that the normal rate - or just extreme cases? I would like to learn more about what to watch for and what to expect when or if it comes back. I had no problems or symptoms prior to the doctors discovering the 9cm mass last fall. Actually it was found by accident in an MRI I had done for an unrelated medical problem. I would like to know that I have a chance of finding and dealing with a reoccurance before it got to be 9cm or a big problem. Best wishes to all and I look forward to learning and sharing information and experiences. Tracy301 Fri, 10 Jun 2005 00:00:00 GMT Hi, I also was diagnosed with this type of tumor. I had it surgerically removed along with both ovaries and uterus. It was malignant but that is all that they are telling me. It did not rupture when it was removed so my doctor feels she got it all. I am like you and I should feel happy that it is gone. ( which I do) but I feel that it can return like my doctor told me. I will be seeing my doctor on Thursday for my 2 week post op. Hopefully she will have more info. I will post if she tells me something new. I will be praying for you. Karen Kittyf5757 Tue, 21 Jun 2005 00:00:00 GMT I recently had an surgery to remove a cyst from from my ovary. Upon examination by the pathologist (did histopat), the findings was that is was a GCT and it was malignant. What is really bad is that it was raptured already when i had the surgery. Though the omentum taken during the surgery shows negative cancer cells from the rapture, still my doctor says this is really a gray area. So far, being not so good in using the internet for research, I have difficulty finding information about GCT, most especially possible treatment. Perhaps someone can share possible tips or sites with informtion on treatment like inhibin? Thanks. Skye_jh Sun, 10 Jul 2005 00:00:00 GMT Hi Jane, I was also diagnosed with the same type of tumor. I have had the inhibin blood test and will be going for a cat scan. From what my doctor has told me this all just finishing up, after surgery to make sure it didn't reappear somewhere else. My doctor also has told me that chemo isn't used to treat this type of tumor because of the low malignacy. There is some info on the internet if you type in google or yahoo "Granulosa cell tumor." I will be praying for you ..let me know how you are doing. Karen Kittyf5757 Mon, 11 Jul 2005 00:00:00 GMT Hi Karen, Thanks! Since the cyst removed was big (17cm) and raptured, the doctor gave us 3 choices: 1) to totally remove the uterus and right ovary (not good, I am just 25 and single, wanna have a family), 2) chemotherapy (may cause possible damage to the right ovary, and 3) wait and observe (have regular consultation with the doc and have regular checks like inhibin test, ultrasound and CT scan). Since the histopath omentum is negative, my family has decided to take on the wait and observe path. Besides, neither of all the choice given can guarantee that no cancer cell has escaped the rapture. The doctor says inhibin is better that ultrasounds and CT scan as it will be able to detect things early. What type of inhibin test did you take? There are various type of inhibin test right? In my case, the doctor did not exactly put in in terms of "finishing up", more like "this is the begining of a long journey", which kindda make people around me panic and treat me like i am so so sick. When did you have your surgery? When was GCT diagnosed, before operation or after operation? Nice to hear from someone in the same situation :-) -jane- Skye_jh Tue, 12 Jul 2005 00:00:00 GMT Hi Jane, I had my surgery on June 8, 2005. The mass was actually found in february but they didn't feel that it was cancerous at the time. I waited so long because I got a second opinion about surgery and also I didn't have any health insurance. I ended up having a hysterectomy ( I am 39) I have one child. I always wanted more but never got pregnant again. She is 10 now so I figured I was done since I am going to be 40 in a month. Anyway.. mine was enclosed in the left ovary.. My doctor was going to leave my other ovary for hormones..but she said it looked suspicious to her so she took it out. I agree with your decision to try and leave everything in since you are so young. I hope you are doing well. Try not to worry.. my friends and family treated me that way for a while when they heard that it was malignant. My doctor told me in my case that these GCS can return but usually is about a 5% chance. Let me know how you are doing, Karen Kittyf5757 Tue, 12 Jul 2005 00:00:00 GMT Oh Jane I forgot to tell what inhibin test I had..It was called an inhibin B blood test. Hope this helps! I am praying for you, Karen Kittyf5757 Tue, 12 Jul 2005 00:00:00 GMT Hi Karen, Thanks so much for the info. I'll be seeing my doctor this friday. Hopefully they will not prescribe any medications, I dislike medicine, and I kindda have this feeling that the cyst was reactive to the medicine the first doctor prescribed to try to dissolved it, so instead of dissolving, it grew bigger. -janet- Skye_jh Tue, 12 Jul 2005 00:00:00 GMT Hi Jane, I wish you luck on your doctor's appointment on Friday. I go on Friday for my Cat Scan. I am curious as to what kind of medication your doctor prescribed for your cyst that you felt made it bigger. I hope you have a great day! Karen Kittyf5757 Wed, 13 Jul 2005 00:00:00 GMT Hi Karen, My menstrual period is so irregular, happening approx 4 times a year, no specific pattern. I decided to consult with an OB gyne last year and she prescribed Provera (for mentration) and she also had me undergo ultrasound to determine if there are cyst or not. Well, there was and rather small (2x1.5cm). She prescribed me contraceptive (Dianne) for 3 months to hopefully dissolve the cyst. After taking it for 3 months, I had another ultrasound again, this time the cyst was 9x5cm already. I am not accusing or what, it just makes me afraid to take on any medication after this incident. I know there might be other factors, but i don't know :-) -janet- Skye_jh Wed, 13 Jul 2005 00:00:00 GMT Hi Janet, My menstrual cycles were all out of whack too. My doctor prescribed provera too. And I also took the pill for a while. The doctor's kept telling me that it was just my hormones. Makes me wonder too. I guess like my husband says.."why do you keep talking about it when it is over" I am glad I have you to talk to :) My husband doesn't like to talk about any of this. Have a good evening! Karen Kittyf5757 Wed, 13 Jul 2005 00:00:00 GMT Hi Karen, If in you case, your husband do not wish to talk about it, in my case, i don't want to talk about it to my family and relative, i don't like people making a big fuss and i most especially don't want my family to worry. I am also glad to have you to talk to about this. Good luck too on your CAT scan. -janet- Skye_jh Wed, 13 Jul 2005 00:00:00 GMT Hi Janet, My Cat Scan went well I was kindof sick on Friday because of the stuff they make you drink before hand. And also the IV contrast they do when you are in the machine. I see my doctor this Thursday. I really hope that I am free and clear. Then I still have to see the oncologist that was in the operating room with me..He was the one that directed my doctor not to remove any lymph nodes since they did not find any cancer in any of my female organs except for my left ovary. I am hoping to put this chapter behind me so I can concentrate on my family. It has been so stressful. How are you doing? Have a good evening! Karen Kittyf5757 Tue, 19 Jul 2005 00:00:00 GMT I know you wanted to hear from someone who has not had a recurrence, but until you hear from them you might be encouraged to know that my first granulosa cell tumor was diagnosed in 1987 and I am still around. Have had 2 subsequent recurrences, chemo, lots of surgery - but living a full and fairly normal life. I'm also on the board of directors of the Ovarian Cancer National Alliance (www.ovariancancer.org). We are trying to get National Cancer Institute to focus on some rare ovarians, such as GCT, so that we can get more specialized treatments. Good luck. Annette Annette1 Thu, 21 Jul 2005 00:00:00 GMT Hi Karen, For my CT scan, they just had me drink lots and lots of water. I felt so bloated afterwards. When they injected the dye for the contract, it felt weird, kindda tinggling sensation. My doctor has advice me to have the Inhibin B test. Luckily we now have it here in the country. I'll be doing it monday next week. I do hope things will be ok already for you. Hi Annette, Are you a doctor? You mentioned you had 2 recurrence, but why lots of surgery, are you saying you had more than 2 surgeries for those 2 recurrence? I am kindda afraid to have chemo, but one of the doctor i talked to adviced me to at least have chemo. The oncologist mentioned that when one undergoes chemo, they become so thin and loss their hair :-( Skye_jh Fri, 22 Jul 2005 00:00:00 GMT Hi Annette, Karen, & Jane....my name is Lyn and I was first diagnosed with a GCT in May of 2002. The cytology was borderline, meaning it was right on the line between benign and malignant, so they told me all they thought I needed was the surgery and that the likelihood of a recurrence was very low, and that if it ever recurred, it would probably be a "late recurrence", meaning in 10-20 years. But, here I am three years later with a recurrence. They had brought me in every three months to do sonograms, blood tests, and had done 2 triple contrast CT scans since January. They said they saw one 2 cm mass and decided to surgically remove it, just to be careful. Well, I had my 2nd surgery on Sept 6th and when they opened me up, they found a far more extensive problem than they had anticipated; there were numerous masses spread around my abdomen. My doc removed as much as she could, but couldn't get it all. So, as it seems to have turned out, my tumor cells were more malignant than they had thought/reported (benign tumors don't spread) or maybe this new problem has to do with the fact they they cut the 1st tumor in half BEFORE they removed it from my body in 2002, allowing malignant cells to spill out and contaminate my healthy tissue. My doc here in AZ said I should go see another doc in TX bec he does research on this type of CA. I am waiting to hear back from his office, but it has been over 3 weeks since my surgery and i haven't heard from them. From what I am told, if I ever hear from them, I will need to do a comination chemotherapy, though the results of my chemo panel were unusual in that my cells were non-reactive to the main chem they use for this kind of CA. I really thought that all the tests they did would keep me safe, or at least catch "something" early, but this is not the case. Annette - I am so glad to hear your story...I am 35 yrs old, and have a 21 month old baby girl that I need to be around for in the years to come. You mentioned lots of surgeries - they have told me that I will most likely need many other surgeries, as well, which doesn't bother me(I had my last sur on Sept 6 and competed in a triathlon on the Sept. 24th). Veryfini Wed, 28 Sep 2005 00:00:00 GMT I noticed that there are 2 threads on this subject - This one "granulosa cell tumor" and one called "granulosa cell cancer". I put my message on both. I was diagnosed with GCT two and a half years ago. I was stage 1a and had a TAH/BSO at the age of 50. I am involved with the Granulosa Cell Tumor Foundation (www.gctf.org), along with the New Zealand branch (www.gctf.org.nz), which are desperately trying to raise funds for research on this woefully under-researched cancer. Please go onto these websites for lots of information. This kind of ovca is so rare that the doctors don't know what to do with it and treat women with chemo that has been only tested on other, more common ovca. Also, on the (www.ovca.net) website, there is a very active thread on the message board for GCT. I have received so much info there from women who have been dealing with this frusttrating cancer. As far as ovca goes, I guess this is the kind to get because it grows so slowly (but not always!) Good luck to you all! Also, Annette1 - are you still collecting info on GCT patients? How do I reply? Thanks, Cindy Libed Sat, 29 Oct 2005 00:00:00 GMT I had surgery six weeks ago for a tumor, did blood test before surgery said level was low, probably not cancer. Two weeks after surgery they said everything was fine, ( they sent my tumor samples to Stanford Medical Pathology University) 4 weeks later tell me I have stage 1 cancer, I am 48 years old, my mother died of ovarian cancer at age 52, I had a full hyterectomy. My gyn sent me to oncologist, he said he has only seen one case, and not sure how to treat me, so now I am being sent to UC DAVIS, Sacramento, Ca to doctor who just treats rare female tumors. I am scared because of my mother's history, and that not much is known about this. They don't whether treat me with chemo or just watch it. I don't want to end up like my mother. Jolene Thu, 06 Apr 2006 00:00:00 GMT I am 20 years of age, and had sugery on 12/28/05/. I had my right ovary removed to what we thought was an ovarian cyst. It turned out to be the unexpected. I was diagnosed with JGCT. I was tested two weeks prior to my sugery for ovarian cancer and everything came back normal and ok. Anyways I have had the hardest time finding information about GCT, and my doctors are failing to give me any information. From what I understand that reoccurence is at higher risk than what my oncologist originally told me. I am considering to have a complete hysterectomy, I know I am young but I feel like this is the only way to really know. If anyone would be willing to give any advice, I would greatly appreciate it! Thanks, Jessica Jessicab Tue, 11 Apr 2006 00:00:00 GMT Hi Lyn, I was just wonder if your docotor ever gave you the name of the doctor in Texas doing research. My tumor was thought to not be cancerous and they sawed it in half to remove it from my ovary. Unfortunately for me it was and it has now spread over my entire body. I have had 4 major surgeries with mulitple reoccurances. I was diagnosed in 1998 and am now 39 yrs old. Its been a year since you posted this e-mail and I hope that all is going well for you. Oh, if there is a specific protein marker in your tumor Gleevec has been noted to disolve the tumors. Unfortunately I do not have that marker. You can google it, as I do not remember the marker number. I had Taxol chemo and all it did was make my hair fall out. Lupron injections kept the tumors from advancing for about a year and a 1/2 before the cancer broke through the meds. I kept my left ovary and uterus up until this last bout when the cancer invaded them both. Unfortunately, I have not been able to have children due to the GCT. Again, if you were given the docs name in TX doing the studies I would appreciate the info. Thanks Rebecca Kulbreez85 Sat, 10 Jun 2006 00:00:00 GMT My daughter Ali was diagnosed at age 11 with Granulosa Cellular Cancer. She is now 16 years old. I have been told by her team of Doctors that she is the youngest recorded case of this type of cancer. Her tumor(12lbs)was removed 5 years ago this month. Since the removal of her tumor she has been healthier than she has ever been. However, I was told that her cancer would without question return. I'm afraid there is no cure, she cannot receive chemo or radiation therapy. The only recourse in the case of a reoccurance is surgical removal. Ali has had her left ovary and fallopian tube removed. I am told that the areas that they are watching are reproductive, stomach, Liver, Lungs and lymphatic system. Her inhiben-B level is monitored monthly via blood tests and will be for the remainder of her life. I know that this all sounds very negative in the small spectim but in looking at the big picture Ali's illness has taught myself and my family so many valuable lessons. While I keep a watchful eye on her health, I thank god for every single second she is still here with us and the health that she has today. Ali has an incredably healthy outlook and a much different outlook on life that I don't see in most adults today let alone a young lady her age. She has rubbed off on us all and we tend to not take the minor day to day pitfalls as hard as we used to. Life is way too short terminal illness or no. The power in positive thinking is incredible. Heather Deanne Mon, 06 Nov 2006 00:00:00 GMT Annette,Thanks for your encouraging post. I had a hysterectomy for a recurrance of GCT two Fridays ago. My first diagnosis and subsequent oopherectomy was in 2001 (Stage One). I am 49 years old.My case goes before a panel of doctors at Beth Israel as to next treatment. After reading other posts, I'm sure that they'll be suggesting chemo. After reading articles in emedicine.com, I realize there may be some choices as to which drugs. Can you tell me the drugs used in your chemo?Many thanks,Barbara   Bee2007 Mon, 21 May 2007 00:00:00 GMT  On 5/21/2007 Bee2007 wrote:Annette,Thanks for your encouraging post. I had a hysterectomy for a recurrance of GCT two Fridays ago. My first diagnosis and subsequent oopherectomy was in 2001 (Stage One). I am 49 years old.My case goes before a panel of doctors at Beth Israel as to next treatment. After reading other posts, I'm sure that they'll be suggesting chemo. After reading articles in emedicine.com, I realize there may be some choices as to which drugs. Can you tell me the drugs used in your chemo?Many thanks,Barbara   Hello, Barbara. First, congratulations on discovering your condition at Stage 1. That is very good news and will be instrumental in deciding the best course of treatment. My cancer was staged at 2C because the cancer had moved from one ovary to the other and the tumor had ruptured.Treatments have changed a lot in the last few years, lessening the toxic effects while maintaining the benefit of the drugs. Also, there are new drug therapies that are very promising. My chemo treatment in 2000 was Cisplatin, Etopeside, Bleomycin. Since my cancer recurred after that, that chemo familiy is now considered ineffective for me. A later recurrence was treated with Tamoxifin/Progestrone, but it recurred again. Last year I entered a clinical trial of a monoclonal antibody, APOMAB, being tested by Genentech at Premiere Oncology of AZ in Scottsdale. It was very effective in knocking down 4 of 7 tumors and the remaining 3 appear necrotic. You can get more info on my trial at this website: ovariancancer.org (click on Survivor Stories - Annette Leal Mattern).Also, if your doctors want to talk to my oncologist, he is Mike Janicek, Scottsdale AZ and he has several granulosa patients. He has truly been a partner in sustaining a good quality of life while dealing with this stubborn disease. FYI, women whose disease is discovered in Stage 1 have an excellent prognosis. And, granulosa cell is a slow grower, so if you are consciencious about it, you can have a full, happy, healthy life.Please let me know if I can help in any way.Annette Annette1 Mon, 21 May 2007 00:00:00 GMT  On 11/6/2006 Heather Deanne wrote:My daughter Ali was diagnosed at age 11 with Granulosa Cellular Cancer. She is now 16 years old. I have been told by her team of Doctors that she is the youngest recorded case of this type of cancer. Her tumor(12lbs)was removed 5 years ago this month. Since the removal of her tumor she has been healthier than she has ever been. However, I was told that her cancer would without question return. I'm afraid there is no cure, she cannot receive chemo or radiation therapy. The only recourse in the case of a reoccurance is surgical removal. Ali has had her left ovary and fallopian tube removed. I am told that the areas that they are watching are reproductive, stomach, Liver, Lungs and lymphatic system. Her inhiben-B level is monitored monthly via blood tests and will be for the remainder of her life. I know that this all sounds very negative in the small spectim but in looking at the big picture Ali's illness has taught myself and my family so many valuable lessons. While I keep a watchful eye on her health, I thank god for every single second she is still here with us and the health that she has today. Ali has an incredably healthy outlook and a much different outlook on life that I don't see in most adults today let alone a young lady her age. She has rubbed off on us all and we tend to not take the minor day to day pitfalls as hard as we used to. Life is way too short terminal illness or no. The power in positive thinking is incredible.Hello. I just read your message about your daughter. I want to reassure you that she can live  along life! I'm a 20-yr survivor of GCT. First diagnosed in my 30s when a large tumor ruptured. I was stage 2C. I've had several recurrences, some resolved with surgery BUT last year, when 7 new tumors presented (3 on the liver), I entered a clinical trial for a monoclonal antibody drug that causes "cell suicide" and only is attracted to cancer cells. These new treatments will change our approach to treatment in the future. It is certainly promising for your daughter because GCT can be dormant for many years, then reappear. It was 12 yrs between the 1st and 2nd occurences in my case. I believe there are 3 important things for you and your daughter to keep in mind: 1. Technology is improving our ability to discover the recurrence earlier and earlier. This will give her more treatment options and will likely be less traumatic.2. Research and new drug development is very promising. There are literally hundreds of clinical trials going on in the US and around the world. For more info on this, go to ovariancancer.org. This advocacy group, which I happen to serve as a board member, keeps ovarian cancer on the radar screen of biotech / R&D / trials and legislative initiatives. 3. Granulosa Cell is a slow growing cancer. Finally, I'm so happy to hear that you and she have such a great attitude about life. It is what has kept me alive and loving life all these years.Please let me know if I can help in any way.Annette Leal Mattern Annette1 Mon, 21 May 2007 00:00:00 GMT Dear Annette1, Can u tell u how many surgeries and chemos u had before ur sucessful trials pls.? i hv gone through a lot,4 surgeries, 8 chemos, ur drugs is the last hope of my life. Can u tell me who was ur oncologist pls. too? tks very much.  gracelaqiu1 Tue, 26 Aug 2008 00:00:00 GMT