CancerCompass message board discussion started by Budd1234 on 11/7/2005 http://www.cancercompass.com/message-board/message/all,3431,0.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/ My wife was diagnosed with Granulosa cell tumor on the 5th of september, she is 23 years old and on the 8th of september the tumor was removed. The mass was 15cm about the size of an orange. The attached to the omemtum was a 2cm mass, but at the time of removal they said the mass had ruptured. The problem or information im wondering is pretty much anything pertaining to granulosa cell tumors and the juvenile version. Since she is under the age of 30. Since we live in a remote area the doctor had never heard of this type of cancer. He removed the two masses. Then in the November we were refered to the Mayo Clinic in Rochester, but the doctor doesn't seem to care as much as I would like. When asked about information he becomes uneducated( I guess thats the word to put it). I asked about Juvenile and he became jumpy and said were did you hear that! Then on the 4 of November he did a partial hysteratomy and removed the omemtum, ovary(right), lymph nodes, appendix, and fallopen tube. At this time I wondering what stage the cancer was? Since they failed to inform us of any information pertaining to the condition, which makes us wonder whats going on. Please help if you can thanks Budd1234 Mon, 07 Nov 2005 00:00:00 GMT Budd: I am so sorry that you and your wife are going through these difficulties. Memorial Sloan Kettering is the nation's top cancer center. If you go to their website they can assign a pathologist to your wife's case and he will review all of the samples and will give you a definitive answer regarding staging, grade and the appropriate oncolgist who can also recommend a courses of treatment. The people at the website answer e-mails within a business day and they are very helpful. Some insurance companies only cover a portion of their bills, but they are also very good to work with if money is an issue. You need to understand alot more about your wife's condition in order that she receive the appropriate treatment. Good luck to her and I wish her a quick recovery. Sthair Fri, 11 Nov 2005 00:00:00 GMT I also participate in another web site - hystersisters.com. It has various message threads, one of which pertains to cancer. It also has a good glossary, and very active messaging. One thing I learned at that site is that it is perfectly justifiable to ask the surgeon (or, in my case, I also have a Physician's Assistant assigned to my case) for a review of the surgical and pathology reports. By carefully reviewing this with the medical team, I got the opportunity to question what all those big words meant. As I discussed it with them, new questions came to my mind, and I got really good explanations. My team patiently re-explained things to me if I didn't get it the first time. I know it can seem daunting - but hang in there. As you are not located right near to your clinic, don't be afraid to call. It sounds as if you have a good husband/wife team going - together you'll get the answers you need, I'm sure. Knotslanding Sun, 20 Nov 2005 00:00:00 GMT