Granulosa Cell Tumor Recurrent

On 4/12/2008 pammyjean wrote:

 

On 2/1/2008 sparkave wrote:

Hi to everyone.  I am in my mid fifties.  I am excited to find this site.  Don't we all feel alone in this plight.  I wonder between us how many different things we have been told by our physicians.  I have traveled many, many miles for answers.

 I was diagnosed with GCT in 2002.  I had a large tumor removed which was encapsulated in my ovary.  I was advised I needed no follow-up treatment.  Three years later I had 20+ tumors.  I had surgery to remove the tumors and the omentum.  One year later I had surgery to removed a smaller number of tumors.  And now one year later I have at least one tumor.

My treatments began after the second surgery and have included:  Lupron, Carboplatin/Taxol, and Femara.

 I have also developed cardiac problems and believe the cardiac complications are related to the cancer treatments.

 I am an advocate for knowledge in our plight against GCT.  I have a deep knowledge of GCT.  I have researched this cancer relentlessly over the past two years.

I don't know how to accomplish it, but we need to share every idea we come up with.  And, anyone who is diagnosed MUST get a second opinion.  I am living a pretty normal life with GCT.  I've been to some of the best doctors in the US, and some that were not so good.

When researching GCT, it is just as difficult to get a straight answer.  How many times have you been told it grows slow, and the next person tells you it grows fast?  How many times have you been told your going to die from this and the next time you are told most people don't die from this?  Have you ever just wanted to have a regular cancer; the kind people care about?  Did you ever dream of turning on the TV or opening a magazine and there is a group of people doing an awareness campaign and a fund raiser for GRANULOSA CELL TUMOR? Has anyone told you to go on a diet and you'll be cured?  I could go on and on.

Please respond.  I have never met anyone with GCT.  I have never corresponded with anyone with GCT.  

We are all connected, yet we are as lonely as the Maytag Repairman!

 Sparks

 

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OMG! Finally I have found someone else with GCT ! My story is very similar. Back around 1983 they discovered the tumor on my ovary the size of a grapefruit. The tumor and the ovary were removed and I, too, was told no follow-up was needed because it was totally encapsulated. Well, in 2003 I went for a routine check-up at a new internist and I mentioned that I got a little winded when exercising and she ordered up a chest x-ray. One thing led to another and after a lot of putting the puzzle pieces together, it was discovered that the "encapsulated" tumor had metastisized to my left lung! A lung biopsy was done and as soon as I healed from that, they did a total hysterectomy. I underwent chemo for the many small tumors in my lung. Cat-scans every 6 mos. show them to be stable since then. Yes, I also have been told it is slow-growing, but I wonder where and when it will show up next! Keep in touch...I hope you are doing well!!