Granulosa cell tumors - recurrent

Hello "Newbie2012" and welcome!  I only joined this forum after my 3rd surgery for GCT, in late January.  I think one thing we have all found is that there is very little information out there about this specific cancer and therefore our collective learning becomes so important to all of us!!  

First I am going to insert a paragraph from one of the articles I found from some Italian research:

"Granulosa cell tumours are the most common ovarian sex cord stromal tumours. They secrete steroid hormones and commonly present with symptoms of hyperoestrogenism. Fertility preserving surgery can be performed for stage 1 disease, whereas a total abdominal hysterectomy with removal of both adnexae is recommended for all other patients. Although no studies have been published regarding HRT after treatment for granulosa cell tumours of the ovary, the general belief is that it should not be used as it is endocrinologically active and hormone-dependent disease "

My oncologist did not recommend HRT.  I was on it for a while prior to being diagnosed.  I am going to take a call now and will write more in a little while.

On May 05, 2012 3:18 PM StarryJones wrote:

Hello "Newbie2012" and welcome!  I only joined this forum after my 3rd surgery for GCT, in late January.  I think one thing we have all found is that there is very little information out there about this specific cancer and therefore our collective learning becomes so important to all of us!!  

First I am going to insert a paragraph from one of the articles I found from some Italian research:

"Granulosa cell tumours are the most common ovarian sex cord stromal tumours. They secrete steroid hormones and commonly present with symptoms of hyperoestrogenism. Fertility preserving surgery can be performed for stage 1 disease, whereas a total abdominal hysterectomy with removal of both adnexae is recommended for all other patients. Although no studies have been published regarding HRT after treatment for granulosa cell tumours of the ovary, the general belief is that it should not be used as it is endocrinologically active and hormone-dependent disease "

My oncologist did not recommend HRT.  I was on it for a while prior to being diagnosed.  I am going to take a call now and will write more in a little while.

Thank you! You mentioned your 3rd surgery. If you don't mind my asking, what stage was the original finding? Did you have a total hysterectomy?

Hi Newbie2012....

Even though the circumstance are not great...it is nice to hear from you.  Like it has been mentioned, we need to stand together.

I know your questions were directed to another person.  However, if you like to know my cancer was stage 1C on my last ovary. I had an hysterectomy when I was 29 years old. GCT is coming back on me now.

Today is my daughters Senior Prom... I am so excited that  I am still here to see this.

Have a wonderful day... TB in GA

 

I'm sorry to say I don't know the staging.  I asked my doctor's office but they haven't gotten back to me on that one.  My first surgery was about 11 years ago and was a total abdominal hysterectomy and oopherectomy.  That was after what we thought was a ruptured ovarian cyst when they saw a mass on ultrasound.  The histology came back GCT.  The second surgery was about 5 years later and there were multiple tumors then - largest being a grapefruit size and the others very small but so embedded around the colon that the doctor removed about 5 inches of the colon.  Since that time I've been closely monitored by the blood tests: Serum Inhibin A and Inhibin B - mostly every 3 months.  My Inhibin B level went up and at first they only saw a small, suspicious lymph node but about 9 months later they could see a 2 cm size tumor.  When they did the surgery they found 2 tumors that size and some very small ones.  Fortunately this time they were able to do the surgery by laparoscopic robot and no colon or bowel had to be cut!....Sorry - more information than you asked for but...

So back to the previous comments.  If you look back on the postings there was reference to an article called GCT for Dummies.  That young women was referencing the work done in New Zealand on a genetic level.    It's quite complex but the last page gives a bit of a summary.    Based on that article I believe my understanding is that this cancer is NOT passed on genetically to our daughters.  Let's hope that is the case!!

In the meantime I am trying lots of things to build up my own body's defenses to hopefully inhibit future tumor growth.  I would love to start a database of all the women we could reach, to map their progess with their different strategies.

Good luck on all your methods and keep me posted!!  I want to stay in touch!!

On May 05, 2012 5:05 PM teblevins wrote:

Hi Newbie2012....

Even though the circumstance are not great...it is nice to hear from you.  Like it has been mentioned, we need to stand together.

I know your questions were directed to another person.  However, if you like to know my cancer was stage 1C on my last ovary. I had an hysterectomy when I was 29 years old. GCT is coming back on me now.

Today is my daughters Senior Prom... I am so excited that  I am still here to see this.

Have a wonderful day... TB in GA

 

Thank you TB in GA! Was the tumor found after hysterectomy? You mentioned it's coming back - is it coming back in other tissues or organs or to female reproductive organs? I'm asking because my GCT was 1 cm & in 1 ovary & was found during pathology testing after total hysterectomy a week & a half ago. Had uterus, cervix, both ovaries removed. Suspected adenomyosis was causing constant bleeding. Path confirmed adenomyosis & the GCT was an "incidental finding". The ovaries & other tissues were analyzed more closely & no GCTs found - just the 1 in my right ovary. The oncologist told me I had nothing to worry about & just make sure I have annual follow-ups with my OB. Is this it? Really? I'm reading here how these tumors don't respond to chemo or radiation & they come back! That's frightening & I can't imagine how you all are coping with these time bomb tumors. I'm 41 & have 2 daughters (9 & 4), I'd like to see them graduate, get married & have babies. Any help or pointing to resources is greatly appreciated.

On May 05, 2012 5:10 PM StarryJones wrote:

I'm sorry to say I don't know the staging.  I asked my doctor's office but they haven't gotten back to me on that one.  My first surgery was about 11 years ago and was a total abdominal hysterectomy and oopherectomy.  That was after what we thought was a ruptured ovarian cyst when they saw a mass on ultrasound.  The histology came back GCT.  The second surgery was about 5 years later and there were multiple tumors then - largest being a grapefruit size and the others very small but so embedded around the colon that the doctor removed about 5 inches of the colon.  Since that time I've been closely monitored by the blood tests: Serum Inhibin A and Inhibin B - mostly every 3 months.  My Inhibin B level went up and at first they only saw a small, suspicious lymph node but about 9 months later they could see a 2 cm size tumor.  When they did the surgery they found 2 tumors that size and some very small ones.  Fortunately this time they were able to do the surgery by laparoscopic robot and no colon or bowel had to be cut!....Sorry - more information than you asked for but...

So back to the previous comments.  If you look back on the postings there was reference to an article called GCT for Dummies.  That young women was referencing the work done in New Zealand on a genetic level.    It's quite complex but the last page gives a bit of a summary.    Based on that article I believe my understanding is that this cancer is NOT passed on genetically to our daughters.  Let's hope that is the case!!

In the meantime I am trying lots of things to build up my own body's defenses to hopefully inhibit future tumor growth.  I would love to start a database of all the women we could reach, to map their progess with their different strategies.

Good luck on all your methods and keep me posted!!  I want to stay in touch!!

Thank you StarryJones! Let's stay in touch & continue to compare notes. Greatly appreciate the reference materials available. I will go educate myself. Thank you again - I'm so relieved this forum is available!

Egad!  I just read that there was a GCT Survivor's Weekend in Boston, the middle of last month!!  I would have LOVED to have gone but live about 5 hrs away....so there are other sites, other forums and hopefully lots of other channels for support and learning!  Just found another forum at Inspire.com .

Take Care Newbie!  And keep positive and proactive!!

Hi Starry,

Can u please tell me where to get more information on the diet you are following?  I have had two bouts of GCT and now two years later my Inhibin B is up to 65.0    Is that pretty high?  Or just on the way to pretty high? 

Thank YOU,

Lori

Hi everyone -

Nice thread and yeah we should all compare notes given the limited informaiton available outside.

33 yrs old, 2nd bout with CGT now, mets to the lung area (not exactly inside the lungs).  Doctor planning a BEP chemo starting June 3, 28 days interval (but i read somewhere in this thread Bep does not really work for GCT *sad, will have to rethink). 

Looks like I'll have to start being best friends with fruits as that seems to be what a lot of you are doing.. any particular fruits anyone would suggest? or just gerally as much assortment of fruits as needed?

 

 

Oh Dear! So sorry to hear your news but let's try our best to stay optimistic and confident that we will all find a way to wipe out this disease! I just watched a GREAT video, "Fat, Sick and Nearly Dead". I would highly recommend it to all of us! It goes into the health benefits of juicing and consequently consuming LOTS of micronutrients. It would be very interesting to see what would happen if we did our Inhibin levels before and after that kind of juice fast!! Keep me posted!!