Granulosas cell tumors ( rare cancer )

This is for anyone out there who has this rare type of ovarian cancer.I have had 2 surgery's ( with alot of complications from each) and am now 9 months in remission.My first surgery was a 12 and a half pound tumor removal and my second it had spread to my liver.Stage 3 for the first one and stage 4 for the second. I just wonder if and when it comes back will that make it stage 5 ? ( Does anyone know ? ) I said no to chemo as a precation because i just did not see the point. My Doc tells me that WHEN it comes back it's always 99 % surgery.So why would anyone put thereselfs thru this and it will come back any way ? I don't know. I wonder all the time ( every day) is this the day it's coming back? I see my doc every 3 months now and i really think he is sad that it hasn't come back yet !! Is there anyone out there that has lived with GCT for over 5 years? Please feel free to contact me if anyone wants to talk about this. I have found that there is not alot of research done on this and i have meet noone { even from the american cancer center } who has this GTC.I have 4 kids and am only 42 and i would sure like some reassureance that i will live long enough to see my first grandchild.It seems that everyone i have asked can not......Thanks for reading this.......Mary

Hi Mary:

I am going on 14 years with GCT that to this date has not recurred.  I did have chemo with my initial cancer and it was a tough regime.  Who knows if I would have recurred without it or not.  No one knows much about this cancer.  I had Stage 1C which means the tumor had ruptured.  This is why they did the chemo.  I am getting ready to have my yearly inhibin B and pelvic done.  Always around this time I get very nervous.  If you would like more information on this type of cancer, go to OVCA.net and find the thread that reads Granulosa Cell Tumor.  There are two wonderful organizations that deal soley with GCT.  The one in New Zealand is actively doing research.  Please go to their website and fill out your case history.  This is very important.  I don't have the website address with me right now, but you can find it by googling Granulosa Cell Tumor Foundation (New Zealand).   Perhaps someone else reading this will have the address.  What were your symptoms when it spread to the liver?  Good luck with your treatment and please keep us posted.  

 

On 2/24/2009 godsaved wrote:

This is for anyone out there who has this rare type of ovarian cancer.I have had 2 surgery's ( with alot of complications from each) and am now 9 months in remission.My first surgery was a 12 and a half pound tumor removal and my second it had spread to my liver.Stage 3 for the first one and stage 4 for the second. I just wonder if and when it comes back will that make it stage 5 ? ( Does anyone know ? ) I said no to chemo as a precation because i just did not see the point. My Doc tells me that WHEN it comes back it's always 99 % surgery.So why would anyone put thereselfs thru this and it will come back any way ? I don't know. I wonder all the time ( every day) is this the day it's coming back? I see my doc every 3 months now and i really think he is sad that it hasn't come back yet !! Is there anyone out there that has lived with GCT for over 5 years? Please feel free to contact me if anyone wants to talk about this. I have found that there is not alot of research done on this and i have meet noone { even from the american cancer center } who has this GTC.I have 4 kids and am only 42 and i would sure like some reassureance that i will live long enough to see my first grandchild.It seems that everyone i have asked can not......Thanks for reading this.......Mary

On 2/27/2009 grapevinek wrote:

On 2/24/2009 godsaved wrote:

This is for anyone out there who has this rare type of ovarian cancer.I have had 2 surgery's ( with alot of complications from each) and am now 9 months in remission.My first surgery was a 12 and a half pound tumor removal and my second it had spread to my liver.Stage 3 for the first one and stage 4 for the second. I just wonder if and when it comes back will that make it stage 5 ? ( Does anyone know ? ) I said no to chemo as a precation because i just did not see the point. My Doc tells me that WHEN it comes back it's always 99 % surgery.So why would anyone put thereselfs thru this and it will come back any way ? I don't know. I wonder all the time ( every day) is this the day it's coming back? I see my doc every 3 months now and i really think he is sad that it hasn't come back yet !! Is there anyone out there that has lived with GCT for over 5 years? Please feel free to contact me if anyone wants to talk about this. I have found that there is not alot of research done on this and i have meet noone { even from the american cancer center } who has this GTC.I have 4 kids and am only 42 and i would sure like some reassureance that i will live long enough to see my first grandchild.It seems that everyone i have asked can not......Thanks for reading this.......Mary

Hello Mary. I am 6 years post Granulosa Cell surgery survivor. SO YOU CAN MAKE IT TOO. Yes, there isn't isn't much info or research funds into this form of ovarian cancer. Contact Mayo or MD Anderson's National Cancer Center library and they will send you (free of charge) info on GCT. But, on the upside, GCT has a better prognosis than other ovarian cancers. I had a very large tumor with ascites. At surgery, they performed several abdominal washings to look for cells floating around. No chemo. Surgery IS the treatment of choice for GCT, I went to the Mayo Clinic (which I highly recommend). But, the MD Anderson in Texas is really good for ovarian cancers, too. If you don't feel confident in your doctor. . .find another one who specializes in gyn. cancers to get the latest treatments. You stated that you go to the doctors every 3 months. I hope they are drawing an Inhibin A & Inhibin B blood test. Cancer is Staged 1-4 and ABC, there isn't a Stage 5. You made the comment, "what's the point." The point is you need to survive for your children. You can survive. The point is "Why not live?" The liver can be cut (to remove the cancer) and the liver can regenerate itself. Have the liver surgery ASAP as you need a liver as it's your body's filter. You may require several surgeries as GCT often comes back, can come back several years later. I read a story about a woman that had it come back 37 or 38 years later. I believe in eating well. I limit meat & dairy. Lots of veggies. 5-9 servings a day. Green tea. I buy green tea with broccoli (SGS) in it from Brassica. This tea is from researchers at John Hopkins. I don't exercise --I should. I also try to limit chemical exposure by using natural cleaning products. God Bless, grapevinek

 

On 2/24/2009 godsaved wrote:

This is for anyone out there who has this rare type of ovarian cancer.I have had 2 surgery's ( with alot of complications from each) and am now 9 months in remission.My first surgery was a 12 and a half pound tumor removal and my second it had spread to my liver.Stage 3 for the first one and stage 4 for the second. I just wonder if and when it comes back will that make it stage 5 ? ( Does anyone know ? ) I said no to chemo as a precation because i just did not see the point. My Doc tells me that WHEN it comes back it's always 99 % surgery.So why would anyone put thereselfs thru this and it will come back any way ? I don't know. I wonder all the time ( every day) is this the day it's coming back? I see my doc every 3 months now and i really think he is sad that it hasn't come back yet !! Is there anyone out there that has lived with GCT for over 5 years? Please feel free to contact me if anyone wants to talk about this. I have found that there is not alot of research done on this and i have meet noone { even from the american cancer center } who has this GTC.I have 4 kids and am only 42 and i would sure like some reassureance that i will live long enough to see my first grandchild.It seems that everyone i have asked can not......Thanks for reading this.......Mary

Hi Mary:  I understand and hear what you are saying.  I was diagnosed at stage 1C due to tumor rupturing in August 2007.  I am from North Dakota, so was sent to Minneapolis for care because there wasn't anyone certified in gynecology/oncology at the time.  I had a complete hysterectomy with cervix, lymph nodes, and ovaries removed.  The tumor was the size of a softball on right ovary.  Since then I have tried to learn what is out there about GCT.  I have been told there is not alot of research being done on this type of ovarian cancer because no one gets it.  I tried chemo of carbo and taxol, without success, due to allergic reaction.  I now have checkups every 3 months, Inhibin B and CA 125 are checked in addition to scans done.  They have been clear so far, thank God.  I try to maintain a positive attitude.  I have read Anticancer by Dr. Schreiber, which provided me with good basic information on nutrition, and how important it is to pay close attention to what we put on our bodies as well as what we put in it, and that we also need to be watchful of our environment.  I have 4 sons and 1 precious granddaughter, so I want to be here as long as I can, especially for her.  God bless you and I pray for your healing to good health.  Toni

Hello everyone!

I just wanted to start by saying that all of you who are fighting this cancer are in my prayers.  My mother is Stage V graulosa cell tumor that has metastized to her entire abdomen. She has had four major surgeries since 2001 that have removed some (but not all) of the tumors.  Every two years we have gone into a local doctor in KS to have her cut open from sternum to pelvis with it only to return months later.  We are in desperate need of any information on doctors, research, trials, treatments, etc. on this cancer.  I am her only daughter and have no idea where to even start.  Our doctor is a great surgeon but we want to travel to a good hospital and that specializes in this cancer. Please please please respond with any names, hospitals, etc. that you have heard of or expereinced.  Thank you so much!!!

Sincerely,

Alicia

My first occurance was 1995 (ruptured tumor @ 1cm in size) they removed the tumor 1 ovary, I had a re occurance 18 months later (elvated CA 125) surgery to remove the small tumor ( no chemo) in 1998 ultra sound showed small mass in ab and on liver, laporscopic surgery revealed no signs of diease but given my history a hysterectomy was done. Now 2009 I have elevated inhibian levels CT shows 9.5 mass in pelvic and area on liver has gotten larger, I will have surgery end of April ( the surgeons feel since so slow growing OK to wait till then for surgery) As to chemo my case will be discussed at the tumor board and recommendations will be made. I feel that if the surgery removes the mass, and nothing suprising is found that I will monitor with Inhibian test and Ct scans and no chemo unless I have an indication of another re occurance, after all it took 12 years for this reoccurance and I am not finding alot of information on the sucess of chemo ( I think cause it is so slow growing)My only mistake was not being pro active with better follow up. If I had monitored my levels faithfuly then I would have been aware of this re occurance sooner and then probobly been able to hav laposcopic surgery. Now I will have a large incission.

Read all you can, ask questions ,be comfortable with you Doctor and make sure he(she) has many resources to go to since this is a rare cancer you need all the opinions you can get. AND do follow up monitoring for ever