CancerCompass message board discussion started by Black_unicorn on 10/18/2005 http://www.cancercompass.com/message-board/message/all,3203,0.htm Sat, 22 Nov 2008 00:00:00 GMT Sat, 22 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello, I am new and need info. I had Granulosa cell tumor at tweleve years and am now fourteen. Is anyone ever that young?? I need info on this type b/c of a school report. PLEASE HELP! Rose Black_unicorn Tue, 18 Oct 2005 00:00:00 GMT Hi, Rose. First, congratulation on being a survivor. I am also a survivor of granulosa cell tumor (GCT). My first occurence was 19 yrs ago and I have had 3 occurences. Today I live a full and happy life. As for your question, according to the Society of Gynecologic Oncologists in a report published by the Gynecologic Cancer Foundation (2005 State of the State of Gynecologic Cancers)GCT is a subgroup of ovarian cancer called Stromal Cell Cancer and represent about 5% of ovarian cancers overall. Of that group, a special subtype, Juvenile Granulosa Cell Tumors (JGCT), principally occurs in girls. According to ACOR.org (Assn. of Cancer Online Resources, JGCT affects girls younger than 18 years (median age, 7.6 years; range, 6 months to 17.5 years in 1 study). JGCT are distinct from the granulosa cell tumors seen in adults. Symptoms include abdominal pain, abdominal mass, and ascites (fluid in abdomen). JGCT has been reported in children with Ollier's disease and Maffucci's syndrome. As many as 90% of children will have low-stage disease (International Federation of Gynecology and Obstetrics [FIGO] stage I) and are usually curable with unilateral salpingo-oophorectomy (removal of the fallopian tubes and ovaries). If you need a reference, try: www.wcn.org. I am not a doctor but am on the board of directors of the Ovarian Cancer National Alliance. If you need more resources or experts, just let me know. We have access to the National Cancer Institute and other organizations. I applaud you for seeking as much information about your health as you can. Let me know if you need more info. Congratulations! Annette Leal Mattern Annette1 Tue, 18 Oct 2005 00:00:00 GMT First of all thank you for all of your help so far. I apologize for sounding so rushed, I had to get off the computer as I have limited time. I have been in remission for almost two years ( YAY!) and need to understand it better for myself...as well as for my project. To explain, my teacher asked me for a disease that I might like to do for this project and the first one that came to my mind was Granulosa cell tumor of the ovary. LOL of course. I have only a few more questions: What are syptoms in general? Is there any way to detec this at birth? And how do I know what stage I was? Thanks~ Rose P.S. Thank you again for all the help!! Black_unicorn Wed, 19 Oct 2005 00:00:00 GMT SYMTOMS of ovarian cancer in general: Abdominal pressure, bloating or discomfort,Nausea, indigestion or gas, Urinary frequency, constipation or diarrhea, Abnormal bleeding,Unusual fatigue, Unexplained weight gain or loss, Shortness of breath. These symptoms are often mis-diagnosed, so we are launching a national campaign called "Turn Up The Volume" to alert women to be aware of their bodies and any changes that do not go away. The symptoms are often associated with the location of the tumor and its impact on the surrounding organs (for example, a tumor growing on the ovary could push on other organs causing indigestion). Many of our women are treated for problems such as irritable bowel syndrome for years until the tumors get bigger and spread. These are the hardest cases to treat. We advise women that if they have symptoms that persist and are unusual for them, then pursue this with a cancer specialist. STAGING: As for your staging, you will have to get that information from your doctor. TEST: There is no way to test for this cancer at birth or even when it is dormant in a woman's body. However, there is a lot of very exciting work going on in this area. In fact, the scientific community was almost totally focused on treatment of cancer but over the last few years, the focus has changed to early detection. This is because technology has changed and given scientists the tools to find the changes in cells with more accuracy. Think about how ipods have changed the way we listen to music, or how cell phones changed with the integration of cameras. Now we can see and track and identify changes in proteins that live inside human cells. These areas of study are called proteomics and genomics. STATISTICS: There are aproximately 28,000 new cases of ovarian cancer diagnosed in the USA every year. Our ability to find identify their condition as early as possible is the key to saving lives. HOPE: The National Cancer Institute says its mission is "to eliminate the suffering and death due to cancer by 2015." For reference, go to www.cancer.gov. I hope this is useful for your report and for your own edification. Please let me know if there is any thing else I can help with. Annette (If you need to know who I am, Google me: Annette --- Message edited by CancerCompass staff: for personal protection, personal identifying information removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---) Annette1 Wed, 19 Oct 2005 00:00:00 GMT Thank you so much. My friend and I are working on this project and don't have a lot of time to reply or look for any information. This information is really giving us the boost we need on this project...although, my friend, Riku, isn't all that thrilled about where this tumor can show up... :) LOL. Oh, well. Only a few more questions.... Do you know of any recent developments or research on better ways to treat this tumor? Well, enough of this talk about my project. (thank you again by-the-way!) Congrats on being a THREE TIME (!!! YAY !!!) survivor! I don't really know anyone else whose had this disease. I know a few who've had cancer though. I met them at Silver Lining Ranch. Ever heard of it?? Well, anyway. Thank you so much. Rose Black_unicorn Thu, 20 Oct 2005 00:00:00 GMT My computer is a jerk....it didn't work. Ummmm...and then all of the sudden the posts showed up...oops...LOL Sorry, Rose LOL, how funny is this??? Black_unicorn Thu, 20 Oct 2005 00:00:00 GMT I am on a new treatment that is very promising. It is similar to a treatment they are found to be successful for women with breast cancer who are now "chemo-resistant" which means we had chemo but it is no longer effective. It is hormone treatment, targeting estrogen hormone activity. There are some side effects but they are managable. This therapy is a 2 yr treatment. The drugs are Tamoxifen and Progesterone. There is also an approach to treating illness called immunotherapy (strengthening the immune system to fight disease). This is a good thing to do whether you have cancer or not. Some serious illnesses have very specific immunotherapy but generally everyone should ask themselves what they are doing to help their body to protect itself against illness. And a new area of study is called psycho neuro immunology (psycho is your mind or thoughts, neuro is your nervous system that translates thoughts into chemical reactions in the body). This is the idea that we can have a profound effect on our health by how we think, deal with stress, let go of anger, love, and live a purposeful life. The evidence is overwhelming that the psychology of an individual has an effect on how one will survive or thrive under catastrophic illness. If you want some references: The Anatomy of Hope by Jerone Groupman MD/Harvard Medical, Deepak Chopra MD Training the Mind, Healing The Body. Annette Annette1 Thu, 20 Oct 2005 00:00:00 GMT Well, This is all the information I need. Thanks for everything! Talk later, Rose Black_unicorn Fri, 21 Oct 2005 00:00:00 GMT Go get 'em, Rose. I'll keep you informed about any new developments. Stay positive! It's worked for me for 19 years. Best, Annette Annette1 Fri, 21 Oct 2005 00:00:00 GMT Same to you! I'll check in later. My Best Wishes, Rose Black_unicorn Mon, 24 Oct 2005 00:00:00 GMT