CancerCompass message board discussion started by Lucky Girl on 11/26/2007 http://www.cancercompass.com/message-board/message/all,18342,0.htm Sun, 12 Oct 2008 00:00:00 GMT Sun, 12 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I was diagnosed with stage 4 granulosa cell OC earlier this year. After a complete hysterectomy and major abdominal tissue removal I am currently undergoing chemo treatments as a precautionary measure.  So far I have completed 3 of the 6 twenty-one day cycles.  There doesn't seem to be much information out there on this type of OC.  I was told that it is rather rare.  So rare that everyone wanted to look at my tissue samples and slides since they don't see much of it.  I was told that it could re-occur anywhere in the body.  It is not a cancer that is confined to the ovaries.  Are there any others out there that have had this type of OC?  Were your treatments successful?  Did you have any re-occurences?  I was told there was a five year success rate with the treatments.  Has anyone had this type and not had precautionary treatments following surgery?  If so what was the success rate?  I hope someone out there has some answers to some of these question.  Thanks Lucky Girl Mon, 26 Nov 2007 00:00:00 GMT Hi Lucky Girl.... To be up front, I am not a strong believer in the allopathic approach. I am living with GCT, original diagnosis occurred in 1996, after a tumor unbeknownst to me ruptured. I had a reoccurrence around 2003, but didn't have surgery until 2005, and this was done laprascopically because I refused the prophylactic hysterectomy. I do have a second reoccurrence, caught in March of this year. I have a tumor in my liver, but it is not a true metatasis, it is a growth from the seeding of blood/cells in my abdomen from the rupture in 1996. I have made the decision to not do allopathic care at this time, and am being treated with chinese medicine from a chinese oncologist/herbalist and have made many changes in my life to support health. My energy level has returned, and I am making headway in improving my health. Fatigue, besides tracking with Inhibin blood test, is a big indicator of its appearance. Are you being seen by a gyn oncologist? How have your MD's proposed tracking your cancer? The best blood test is inhibin, either type A or type B, one may be more sensitive for you, B works best for me. The 5 year success rate may be more a factor of the slow growth nature of this and GCT's tendency to reoccur anywhere from 1 to 20 years, rather than true "success" as no one has been able to substantially show that chemo or surgeries prevent reoccurrences. The surgeon at Mayo said they just do surgery everytime a tumor pops up, that's when I decided I wasn't going to keep going on this route. I did get another opinion at CTCA in Zion, IL, Dr. Williams is a sweetie, her suggestion again was surgery, but also said "we could try Doxcil as it is slow-releasing" but she was not able to say that it would "cure" this. What type of chemo are you receiving? This is a slow growth cell type, and slower acting chemos may have effectiveness more so than others. I believe the cure is somewhere else than allopathic care. I can help if you have more questions. Wishing you well, Mariah On 11/26/2007 Lucky Girl wrote: I was diagnosed with stage 4 granulosa cell OC earlier this year. After a complete hysterectomy and major abdominal tissue removal I am currently undergoing chemo treatments as a precautionary measure.  So far I have completed 3 of the 6 twenty-one day cycles.  There doesn't seem to be much information out there on this type of OC.  I was told that it is rather rare.  So rare that everyone wanted to look at my tissue samples and slides since they don't see much of it.  I was told that it could re-occur anywhere in the body.  It is not a cancer that is confined to the ovaries.  Are there any others out there that have had this type of OC?  Were your treatments successful?  Did you have any re-occurences?  I was told there was a five year success rate with the treatments.  Has anyone had this type and not had precautionary treatments following surgery?  If so what was the success rate?  I hope someone out there has some answers to some of these question.  Thanks -----end quote------ Mariah Wed, 28 Nov 2007 00:00:00 GMT My tumor was also found after a rupture that happened in March.  My surgery was not until June.  I had several opinions before I finally made the decision to have surgery.  The tumor they removed was the size of a grapefruit.  The surgeon said that it had obviously been there undetected for quite a while.  They also had to scrap my bladder and colon.  My appendix was also removed along with a large amount of fatty tissue from my abdomin.  All of the tissue that was removed had splattered leisions from the rupture and active cancer cells detected in all them.  Supposedly they removed all of the tissues that we affected except on susipicious area on the outside of my bladder.  My OB-GYN sent me to a OB-GYN Oncologist and they also had conferences with MD Anderson.  In their opinion it was best for me to take chemo due to the rupture.  They all said if that would not have happened the ovary could have been removed with no treatment.  I am taking cysplatin, bleomycin, and one more I can never remember the name of.  I am on a 21 day cycle and my treatments are 5 days in a row lasting 8 hours each and then a two hour treatment of just bleomycin a week later.  I  have been so sick I am beginning to wonder if doing this as a precautionary measure was worth the effort.  If I die from the treatments it won't really matter any way.  My Sept treatment put me   in the hospital for 5 days and I lost 25 pounds.  Nothing like vomiting and diarhea as a new weight loss plan.  I don't understand the intesity of the treatments.  I am there with people that are suffering from cancer that is active and they are not on as heavy a treatment as I am.  I have asked and asked why mine is so much stronger and last so much longer than anyone elses.  They just keep saying it is the protocol for the type cancer that I have.  I am glad that your treatment seems to be working for you.  I wish that I would have found an alternative also.  What if I go thru all of this and in 5 years I just have to do it all over again.  That is not a good thought for the future.  I am afraid that I will live in fear of a reoccurance for the rest of my life.  Thanks for listening.  It is good to hear from someone else who knows what I am talking about. Lucky Girl Thu, 29 Nov 2007 00:00:00 GMT I was diagnosed with Stage 1 C granulosa cell ovarian ca. complete hysterectomy, etc. no chemo was required, but I think you have gone the right route due to your stage of diagnosis. I just got done writing to another GC patient and told her that I am a Mayo Clinic patient and they suggest that every 6 months I have a blood test called Inhibin A and Inhibin B. It's a blood test that looks for proteins that shouldn't be in the blood. . .a very effective test and not too expensive. I'm still kicking at it's been 5.5 years since I was diagnosed. Yes, GC is very rare and it's hard to find information. Contact the Cancer Library at the Mayo Clinic and they will send you some written material at no charge. Hang in there! grapevinek Thu, 29 Nov 2007 00:00:00 GMT I am glad to hear that you have had no re-occurance and that you are doing well.  My doctor told me that I will have to come in every 3 months for the first year and then every 6 months there after.  Thank you very much for the suggestion  of the library at Mayo Clinic.  I will do some research there.  It is good to hear a success story!!!! Lucky Girl Thu, 29 Nov 2007 00:00:00 GMT hello lucky grl , i have to say  yes the  doctors say this is a rare cancer i too had  ovarain cancer but  mine was at stage 2 i had a tumor about 6 to 8 centimeters i think they said  i  did my 6 treatments of  chemo  i just finished a bit ago i feel  good and  my  blood count for my ca125 is less then 1 percent  they said  which is excellent , so i tk it the chemo worked and did it job i had every thing removed also.i  just want to say  keep up the  spirit and  we all will get threw this  ok  hope  all is well  with u On 11/26/2007 Lucky Girl wrote:I was diagnosed with stage 4 granulosa cell OC earlier this year. After a complete hysterectomy and major abdominal tissue removal I am currently undergoing chemo treatments as a precautionary measure.  So far I have completed 3 of the 6 twenty-one day cycles.  There doesn't seem to be much information out there on this type of OC.  I was told that it is rather rare.  So rare that everyone wanted to look at my tissue samples and slides since they don't see much of it.  I was told that it could re-occur anywhere in the body.  It is not a cancer that is confined to the ovaries.  Are there any others out there that have had this type of OC?  Were your treatments successful?  Did you have any re-occurences?  I was told there was a five year success rate with the treatments.  Has anyone had this type and not had precautionary treatments following surgery?  If so what was the success rate?  I hope someone out there has some answers to some of these question.  Thanks  freeatlast Fri, 30 Nov 2007 00:00:00 GMT  On 11/26/2007 Lucky Girl wrote:I was diagnosed with stage 4 granulosa cell OC earlier this year. After a complete hysterectomy and major abdominal tissue removal I am currently undergoing chemo treatments as a precautionary measure.  So far I have completed 3 of the 6 twenty-one day cycles.  There doesn't seem to be much information out there on this type of OC.  I was told that it is rather rare.  So rare that everyone wanted to look at my tissue samples and slides since they don't see much of it.  I was told that it could re-occur anywhere in the body.  It is not a cancer that is confined to the ovaries.  Are there any others out there that have had this type of OC?  Were your treatments successful?  Did you have any re-occurences?  I was told there was a five year success rate with the treatments.  Has anyone had this type and not had precautionary treatments following surgery?  If so what was the success rate?  I hope someone out there has some answers to some of these question.  Thanks In 2004 I was diagnosed with stage II Germ Cell Cancer.  After major sugery to remove the  remaining  ovaries left from my 1990 hysteryectomy, I underwent 3 weeks of Cisplatin, Etopiside and Bleomycin. My last treatment was in February 2005. I suffered a stroke the weekend of my last treatment. All my oncologists, surgeons and nuerologists say the Cisplatin is what did me in.  I've been thru the germ cell chemo. It is rough. My doctors swear I may die of another tpye cancer , but NOT ovarian cancer.  My wash detected only a "few" cell on my abdominal wall.  Since I have become more aware of the "silent killer" I have only mwt 2-3 women with our type cancer.  I am very, very fortunate  GubbaGut Thu, 13 Mar 2008 00:00:00 GMT I also had GCT and was dx 14 years ago.  I have had the same treatment as you describe.  My onc did say it was a heavy duty treatment.  I also wondered by so much for a slow growing disease.  I was also very sick but never ended up in the hospital.  I only had 3 rounds as I was dx with 1C.  I had been complaining for what seemed forever before the actual rupture.  Had complete hysterectomy and 3 rounds of the same chemo as you.  I have not had a recurrance as yet, only a scare.  I am due for my annual blood work in April and I am already starting to get nervous.  You are right though..you do have to worry about this type of cancer coming back forever.  You also do need the inhibin A or B tests done.  Mariah has been going a different route.  I have been exchanging emails with her also (Hi Mariah).  If mine comes back, I don't know what the plan would be.  I don't know about the chemo anymore although my doc says he would treat the same way.  Mariah has some very interesting information and is very knowledgable.  Her way of treating this disease is definetly easier on the body. newportgirl Thu, 13 Mar 2008 00:00:00 GMT  On 3/13/2008 newportgirl wrote:I also had GCT and was dx 14 years ago.  I have had the same treatment as you describe.  My onc did say it was a heavy duty treatment.  I also wondered by so much for a slow growing disease.  I was also very sick but never ended up in the hospital.  I only had 3 rounds as I was dx with 1C.  I had been complaining for what seemed forever before the actual rupture.  Had complete hysterectomy and 3 rounds of the same chemo as you.  I have not had a recurrance as yet, only a scare.  I am due for my annual blood work in April and I am already starting to get nervous.  You are right though..you do have to worry about this type of cancer coming back forever.  You also do need the inhibin A or B tests done.  Mariah has been going a different route.  I have been exchanging emails with her also (Hi Mariah).  If mine comes back, I don't know what the plan would be.  I don't know about the chemo anymore although my doc says he would treat the same way.  Mariah has some very interesting information and is very knowledgable.  Her way of treating this disease is definetly easier on the body.Good luck with your blood work.  Hopefully it will be normal. I know how nervous you must be about this.  I guess this is just something that will be part of our lives forever and we will not ever know when the beast will raise it's ugly head again.  I can say about 100% that chemo would not be an option for me again.  I would definitely look for other options.  The chemo has been very hard on me.  My treatments ended about three weeks ago after many days of being sick and many delays along the way.  This has been a long and rocky road right to the end.  My last treatment had to be delayed so that I could recieve 3 units of blood, a bag of platelettes, and a bag of magnesium.  After my last treatment my blood markers were good but the CAT they did showed a spot of some sort on my liver.  Today I had a MRI as a follow up to see exactly what the spot is.  Now I am waiting again.  I will not see the doctor until next Thursday.  It seems like the last three weeks has been an eternity and now I am still waiting.  Good luck again!!!  Lucky Girl Thu, 03 Apr 2008 00:00:00 GMT Hello  -  I'm hoping you're still on this website.  How are you doing?  No reoccurance in 5-6 years?  I hope thats right.Susie SusieB Thu, 07 Aug 2008 00:00:00 GMT