Granulosa Cell Tumors

Hi all, just found this forum and was glad to get a connection with other women that are fighting this same cancer. First occurance was in 1999, I had emergency surgery for what they thought was appendicidis. After surgery we were all surprised to hear Granulosa Cell Cancer and that it had ruptured. Dr did a total hysterectomy, put me on hormones and said it was "not likely to reoccure". No followup. Had some bladder problems in 2006 but Dr check ups showed nothing. New Dr in 2007 immediately found a very large tumor that had attached itself to my bladder and while doing surgery to remove it found it had infiltrated my bowels. Luckily he was able to do a resection. Followed with 6 weeks of radiation 1 month off and then 6 months of Chemo. Now almost exactly 1 year later I have another reoccurance in both lobes of my liver (many tumors) they have also found a nodule on the outside of my right lung. We tried 3 rounds of chemo administered thru a cathater directly into the liver and we were all shocked to find that the tumors grew. Waiting now to see if we are going to try a different chemo. I feel better having read that I am not as alone as I was feeling. Thank you all for your stories and encouragment.

Hi Glenda16!! It is surprising to me just how many women are surfacing with Granulosa Cell Tumours! I expect that at some point in time it will not remain the "rare" cancer that it is presently labelled. I have had 3 surgeries for GCT since 2002 and have not undergone treatment of any kind to date (last surgery in May 2008). I hope that this remains the case, but I am also realistic. At 52 years of age, GCT has many years to once again rear its ugly head! Reading your email, I get the impression that you are an optimist and fighter. Atta girl!! I wish you the best and hope that you find the right treatment to hold this cancer at bay!! We can only hope that more attention is given to this disease ... soon!!! Take care! Brenda

I am very happy to have found this site! I feel as though I am the only person with GCT sometimes.  I know that this is considered a rare form of cancer, however just as devistating.  I was diagnosed on a fluke in November 2008.  I had experieced some bloating and lower back.  I am over weight and at the time  preparing myself for Baritric surgery.  I have had a ultra sound in August 2008, which reveal a enlarged kidney.  Was told by my PC to have test repeated in three months.  With Baritric surgery scheduled for December 2008, I decided to repeat scan in November.  At that time the tumor was found, it was the size of a brick on your home. I had a total hysteromy one week before the scheduled (now cancelled) baritic surgery.  The tumor was said to be contained and no staging was done, no chemo.  I was told to have blood test and CT Scan every 4 months.  The first testing done in April proved to be a good.  However in early July 2009, my CT Scan was normal but my inhiblin A & B was up.  My oncologist order a PET Scan with a couple weeks and more blood work.  The PET Scan was normal and A & B had doubled.  He has scheduled me for another PET Scan and blood work for November.  I would like to know is anyone has experienced the elevation of these blood test? I am really unsure of what's happening, does this mean a recurrance ? If anyone has information on inhibin A & B, please let me know 

On 9/22/2009 markjcsum wrote:

I am very happy to have found this site! I feel as though I am the only person with GCT sometimes.  I know that this is considered a rare form of cancer, however just as devistating.  I was diagnosed on a fluke in November 2008.  I had experieced some bloating and lower back.  I am over weight and at the time  preparing myself for Baritric surgery.  I have had a ultra sound in August 2008, which reveal a enlarged kidney.  Was told by my PC to have test repeated in three months.  With Baritric surgery scheduled for December 2008, I decided to repeat scan in November.  At that time the tumor was found, it was the size of a brick on your home. I had a total hysteromy one week before the scheduled (now cancelled) baritic surgery.  The tumor was said to be contained and no staging was done, no chemo.  I was told to have blood test and CT Scan every 4 months.  The first testing done in April proved to be a good.  However in early July 2009, my CT Scan was normal but my inhiblin A & B was up.  My oncologist order a PET Scan with a couple weeks and more blood work.  The PET Scan was normal and A & B had doubled.  He has scheduled me for another PET Scan and blood work for November.  I would like to know is anyone has experienced the elevation of these blood test? I am really unsure of what's happening, does this mean a recurrance ? If anyone has information on inhibin A & B, please let me know 

Contrary to what MDs "use" these markers for, they really are more of an indication of one's immune system working during the healing process. The medical world does not really know what the relative values mean. Some women have high levels and small tumors, others large tumors and small values. I have had greater success and peace of mind approaching my healing process using chinese medicine herbal and acupunture treatments, and learning German New Medicine's explanation of the healing process, which is a benevolent and corrective process. We need to get away from the fear tactics, the rush to treat which cause shock and more injury to the psyche/immune system.