Granulosa Cell Tumor

Hi Everyone,

I am new here.  In August of 2007, a mass was found on my ovary.  After being told it was probably nothing, I had surgery in September to remove it.  When the lab reports came back, I was told it was a granulosa cell tumor.  My gyno said I needed to have a complete hysterectomy and in November, I had surgery again.  I did some research on GCT and everything I found told me it was a form of cancer.  When I asked my gyno if I had cancer, she said no. She told me I had to be watched closely over the next 5 years but it probably wouldn't come back.  When I asked her about staging, she said it didn't apply to me because I didn't have cancer.  When I asked about blood tests, 'nope', didn't need them. She said I could speak to an oncologist if I wanted to.  I asked her why I needed to see an oncologist if I didn't have cancer and she said 'for a second opinion only.'  I chose not to speak with one because I trusted everything she said.  However, I still felt as though something wasn't right.

Fast- forward to now, one year after my initial diagnosis and first surgery.  I decided I wanted to see an oncologist so he could tell me 'straight-up' that I didn't have cancer.  Needless to say, those weren't the words I heard.  After a year of thinking I didn't have cancer, I found out that, not only did I have cancer, it was very rare.  I guess I always knew, deep down, what I had but it still came as a shock.  I have finally stopped crying.

My oncologist told me the gyno was probably trying to save me the trauma of the 'c' word, but how dare she!!  I had a right to know!  Part of me is so mad I just want to slap her and the other part of me says, 'at least I know now and that is all that matters.'  I am not sure how I will handle this when I have to see her again.

My new doctor, is wonderful.  He did an Inhibin test and I am anxiously awaiting the results.  I just had a CT scan and all looked good.  I have to see him again in 6 months for more blood work and an exam.

I am very happy to have found this site.  I would love to hear from other GCT patients.  I was wondering if anyone could give me some details on the Inhibin test.  I want to be ready when I get the results, but I don't know enough about it.  I would also like to hear about some symptoms of relapse.  When I first got sick, I was so blasted tired I could hardly move.  I think the more we know about, the easier it is to listen to our body.  I have decided to be pro-active instead of reactive, and I welcome any advice.

Thanks for taking the time to read my story.

Hello,

I have stage IV GCT. I know quite a bit. You are weclome to ask me anything. Make certain that the MD tests for Inhibin B, not Inhibin A. Also, tests of MIS and estrogen are useful. You should probably have a hysterectomy and bilateral ovaries removed, if one is not gone already.

You can email me here anytime and I can give you my phone number in private messages.

It takes a while just to deal with the idea of cancer!

Take it slow...

Rachel K. 

I have GCT, was in pre op testing for the uterine cancer I had (different benign type) when they did a transvaginal US in office. It was 4 days befroe Christmas last year, he seen the tumour in my ovary, but didnt tell me he didnt want to ruin my Christmas.

On 12/28/07 I had a TAHBSO for uterine, and what turned out to be GCT of the ovary. He explained to me I would need no chemo, as It was contained all in my ovary and was a Stage 1a. Howerver . . I have gone every 3 months since for pelvics, a modified pap, and bloodwork for Inhibin B. I also had a CT scan

I have just been told I now go next year every 4 months instead of every 3 All of the same tests, just less often. This changes in the span between visits lengthen, as long as everything is OK for the next 8 years. THat's the 'survivor' window for ovarian cancer.

He also told me it is rare 15% of the people in the world get it, that it is very slow growing and chemo isnt effective with it therefore. He also said at some point in my life it may come back, but he said I would probably be gone from another cause by then.

Keep your chin up, follow your gut instinct. EMail me if you like.

On 10/30/2008 RachelaK wrote:

Hello,

I have stage IV GCT. I know quite a bit. You are weclome to ask me anything. Make certain that the MD tests for Inhibin B, not Inhibin A. Also, tests of MIS and estrogen are useful. You should probably have a hysterectomy and bilateral ovaries removed, if one is not gone already.

You can email me here anytime and I can give you my phone number in private messages.

It takes a while just to deal with the idea of cancer!

Take it slow...

Rachel K. 

Hello Rachel (and anyone else who wants to respond)

     I am posting here for the first time. I was diagnosed with GCT Jan 08 and had a TAH, and exploration of abdominal cavity with biopsies and lymph dissection in August. This surgery showed furthur spread but no tumors.  My oncologist/ surgeon recomends Chemo and sent me to a medical oncologist. He indicated that there are no clear answers when I let him know that I had to see some studies which convinced me Chemo was effective. I have opted not to do Chemo. The research I have done simply does not convince me that it is effective, although , because of the rarity of this type there are very few studies so they really don't have that much data.

     I would be interested in hearing about your history - how long since you were first diagnosed, what treatment options you have pursued and what you have felt was the right course for you.

      I am watching and getting scans and markers tested (inhibin,estrogen, CA 125) I do not know what MIS is? Could you let me know?

     Did you get pathology information regarding the mitotic rate or how differentiated the cells were? Does GCT seem to be agressive in your case or has this taken many years to advance?

     I have been working on a holistic approach-trying to really evaluate my life and reduce stress, encorporating substances in my diet (green tea, tumeric, many veggies ect. taking mushroom compounds and omega 3 fatty acids, visualization and meditation) Generally going for a stregthened immune system and overall health. I was inspired by a book called Anti-Cancer as well as others and I have met and read about many people who beat or greatly slowed down the progress of cancer through this approach. I definitely feel better and am happier. Who knows where ti will lead.

     AS I read these messages, I am struck by what seems to be ignorance and poor handling by so many doctors! It seems like people encounter a different opinion and approach with every doctor. Doesn't make me want to put my faith in the Doctors. I don't think there is any substitute for taking charge myself, gatharing information and going with my gut. Research shows that the "problem" patients i.e. ones who question their doctors and make their own decisions do better.

     Thanks. Hope you are doing okay. Nancy

On 10/30/2008 RachelaK wrote:

Hello,

I have stage IV GCT. I know quite a bit. You are weclome to ask me anything. Make certain that the MD tests for Inhibin B, not Inhibin A. Also, tests of MIS and estrogen are useful. You should probably have a hysterectomy and bilateral ovaries removed, if one is not gone already.

You can email me here anytime and I can give you my phone number in private messages.

It takes a while just to deal with the idea of cancer!

Take it slow...

Rachel K. 

Hello , I live in dallas does any one have a good GYN/ONC who has good experience with GCT.

 I would greatly appreciate help

Thankyou

Lilly

Hi!

It has been 11 years since I had a complete hys for this type of cancer (1 week before my 40th birthday).  I also did the chemo that was recommended taxol/cisplan for 6 months even though I was a 1a.

I did all of the monthly check-ups and then the yearly checkups.  My last complete CAT and MRI was 3 years ago before I moved to PANAMA with my husband.

Well a couple of weeks ago I started feeling a little bloated and decided to get a check-up (it has been a year since my last check-up).  Well, they found 4 tumors of granulosa in my pelvic region.  All my tests are coming back negative (my CA-125 is 0.9, CEA is 2.21, etc.  Everything is well below the half-way of the normal range.

I am scheduled to go under the knife in a couple of weeks to get these tumors removed down here in PANAMA.

It has been 11 years and the onocologist told me there was a less then 1% chance that it would return with a complete hyst, well I am in the 1% range.

The main reason I am writing is to make sure you do your monthly/yearly tests and know your body.  I went in because I was starting to feel bloated in my stomach.  My husband says the only reason I went in was because we were at a restaurant and the waitress wanted to know when my baby was due--I didn't know whether to be pissed because I looked  about 5 months pregnant or thank the waitress that she thought I was young enough to be having a baby!

Another thing is to be positive and not let anyone get you down!!

 Mary

On 4/5/2009 whypanama wrote:

Hi!

It has been 11 years since I had a complete hys for this type of cancer (1 week before my 40th birthday).  I also did the chemo that was recommended taxol/cisplan for 6 months even though I was a 1a.

I did all of the monthly check-ups and then the yearly checkups.  My last complete CAT and MRI was 3 years ago before I moved to PANAMA with my husband.

Well a couple of weeks ago I started feeling a little bloated and decided to get a check-up (it has been a year since my last check-up).  Well, they found 4 tumors of granulosa in my pelvic region.  All my tests are coming back negative (my CA-125 is 0.9, CEA is 2.21, etc.  Everything is well below the half-way of the normal range.

I am scheduled to go under the knife in a couple of weeks to get these tumors removed down here in PANAMA.

It has been 11 years and the onocologist told me there was a less then 1% chance that it would return with a complete hyst, well I am in the 1% range.

The main reason I am writing is to make sure you do your monthly/yearly tests and know your body.  I went in because I was starting to feel bloated in my stomach.  My husband says the only reason I went in was because we were at a restaurant and the waitress wanted to know when my baby was due--I didn't know whether to be pissed because I looked  about 5 months pregnant or thank the waitress that she thought I was young enough to be having a baby!

Another thing is to be positive and not let anyone get you down!!

 Mary

Thats right Mary! 

I've got just about 2 years post op from total hyst.  I hope I can go another 5 years without any symptoms...or 20!  :0)

Thank GOD for symptoms with this cancer.

Many Blessings  ~~Susie B.

hmm. just re read my message. doesnt make sense, does it?

The only clue I had was a major bloated tummy and horrible bleeding.  Now since the hyst., I'll know my symptom by the bloated tummy.

.....sigh.  Susie B.