Granulosa Cell Tumors

Hello. I am curious if anyone out there with granulosa cell tumors has gone another route other than chemo?

Any one out there just decide to do surgery and do other things with diet and excercise?

I was diagnosed with gct 5 years ago and just had surgery for a recurrence. They found a tumor on my colon, one on my bladder and there were active cells, no tumors in my omentum.

Five years ago, they did a complete hysterectomy due to non stop bleeding and they found my left ovary completely engulfed with a gct.

I am curious about alternative treatments since chemo appears to be iffy at best.

Hope to hear from someone soon.

Thank you!

 

On 8/24/2009 Sunset5 wrote:

Hello. I am curious if anyone out there with granulosa cell tumors has gone another route other than chemo?

Any one out there just decide to do surgery and do other things with diet and excercise?

I was diagnosed with gct 5 years ago and just had surgery for a recurrence. They found a tumor on my colon, one on my bladder and there were active cells, no tumors in my omentum.

Five years ago, they did a complete hysterectomy due to non stop bleeding and they found my left ovary completely engulfed with a gct.

I am curious about alternative treatments since chemo appears to be iffy at best.

Hope to hear from someone soon.

Thank you!

Hi:

So sorry you are going through this.  I don't have much to add to this as I was dx 15 years ago and did have chemo and have had no recurrance to date, but am recently experiencing some problems though my Inhibin B came back 3 months ago normal.  Have you checked out ovca.net?  They have a very good thread on GCT and it has lots of information.  I know there are a few on there who have tried the alternate diet etc. with good results.  Also you can get additional information from GCTF of New Zealand on line.  Best of luck.

Debbie 

 

 

Hi Debbie, Thank you for responding to my message. Wow! 15 years is a great long time to be without a recurrence. Where did you go to get chemo and who was your oncologist? Do you remember what agents they used? Tell me if you remember what the cycles were. You have had the best success I have heard about so far. I think I would have been in better shape if they had done chemo the first time around, but I kind of feel it may be useless since the cancer has most likely spread its cells since my recurrence showed that kind of evidence. Please tell me more about your experience. I want to know the good, bad and the ugly cause I know it is all of that. I really appreciate hearing from you. I am still trying to decide best course of action for myself. I can go any where for treatment so it doesn't matter if your doctor is far or near me. I live in the Los Angeles area of California, but I am totally portable, hahaha! Look forward to hearing from you again.

I am in the Washington DC area.  I used Northern Va Gyn/Onc Associates in Annandale.  I had Kaiser Permanente for my insurance company but they were great and consulted some of my care out.  It has been awhile with the chemo now, but I think it was cisplatin, blyeomycin, and something that started with a v????  I had it for 1 week on everyday, then 2 weeks off for 3 rounds.  Was pretty harsh, but not impossible.  I do not want to give you the idea that I have not recurred because I had chemo.  I really have no idea why I have not reoccurred.  That could also change any day as anyone with cancer will tell you.  The verdict is really still out on chemo for GCT.  My docs decided to do it because my tumor was on the larger size, the mitosis rate was higher, and my tumor ruptured before surgery.  I was dx 1C.  What was your dx stage?  I will be glad to fill in any other questions you have, but am in a bit of a rush right now as I have to be at a meeting.  I really really suggest you visit the GCTF New Zealand website as they have over 80 case histories and lots of really good information. 

Hello Again! I was dx 1a over 5 years ago. My cyst was also large and it ruptured during surgery. I did not know this until a few weeks ago when I requested all of my medical records and read them. I was shocked when I saw the pathology from my first surgery, a pathologist outside my plan had been consulted and he said that I had 2 additional factors that might cause a recurrence, one factor being the size of my cyst 10cm and the other factor was high mitosis rate. These tidbits of information were never given to me by my doctors. I was not treated by an oncologist. I have Kaiser and they told me that my cancer was rare and would probably never come back. The doctor they told me was an oncologist was merely an ob/gyn with a fellowship in pelvic surgery. He has IS NOT board certified in oncology and doesn't even have a fellowship in that area. I am livid. They also will not refer me out for further consultation and have insisted on my going to all Kaiser doctors. I have had symptoms for more than 2 years and they completely missed the tumor on a previous ct scan that I had in November. I am angry and have decided to pay for additional opinions from my own pocket. I am 48 years young. How many years young are you? I must ask, what have you been doing for the last 15 years? Do you follow a special diet? Do you take vitamins? Do you have a strong faith that has helped you through this whole ordeal? In the first email you sent me, you said you might be having some issues/symptoms now. What are you feeling and what do the doctors say? I really appreciate your emails. Thank you! I travel to the east coast several times a year. DC is one of the places I have frequented over the last decade. I am currently looking into the MD Anderson clinic in TX. My brother lives about 3 hours from there so I may check it out. Thank you again.

Hi Again:

That is the stupid part.  I have done nothing special.  No special diet, no special care.  I don't have any special beliefs etc.  I also had been having many problems prior to dx.  They thought I had polycystic ovaries etc.  No one did an ultrasound or CAT.  I went 3 years like that until finally I was in such pain obviously due to the rupture that I went to the ER.  There they thought I had appendicitis!  Anyway, thought I was having my appendix out, but woke up to ovca!  I was pretty much given the standard, this will probably never recur, but we are going to treat it aggressively anyway.  We want to do everything possible to prevent a recurrance.  That is why the chemo.  I was treated by on oncologist.  In addition, they also called in a gyn/onc as well.  Your situation sounds like mine with a high mitosis and large tumor.  Mine was about the size of a grapefruit I was told.  Right now I have some ocassional pain under my right ribcage.  Probably around the liver area, also occassional pelvic pain on one side.  Inhibins and additional bloodwork all came back normal.  My doctor will give me a CAT if I want one.  All in all though feel pretty good.  If you go to ovca.net you will see many survivors have the rib area sporatic pain.  I was told that some of the pelvic pain may be due to adhesions and surgery scars.  It is not severe by any means and only occassional.  I was 43 at dx.  Hope this helps.  Will post more later.

 

Thank you for sharing the details. It really helps me to hear about your situation because our history does sound very much the same. I am also glad to know that the rib pain I have been having is "normal" for this thing. I was having cramps in my rib muscles before they did the last surgery and I couldn't figure out why. I am still getting opinions about chemo. At present, I feel pretty good with the exception of the pain from healing and so on. I see no reason to make myself sick with chemo if they don't know what will work and also since I think if chemo was going to work, it should have been given when I was first dx. None of the cancer markers {CA 125} or the inhibin A or B came back abnormal. My blood work showed a VERY healthy woman for my age, 48. It looks to me like some of the cases where chemo was used in a recurrence, the cancer came back sooner and it was ANGRY. Larger tumors and more of them. I almost prefer to take my chances and just enjoy the rest of my life. I welcome any opinions or factual information that you or any one else can send my way. I have had poly cystic ovaries dx since I was 14. I had my right ovary and fallopian tube removed then. Had more cysts removed from my left side at age 18, and then was operated on twice more for ovarian cysts in my late 20's. Had total hysterectomy just 2 months before my 43rd birthday and was told ovca. I have to wonder if it wasn't that all along and they just didn't know it. I have had pelvic pain all of my life. They also dx irritable bowel syndrome which I wonder now if that was all a part of this. Please stay in touch. Thank you for sharing with me. PS...I went on to have 5 children. Ages 28yrs - 10 yrs. I have a 7 yr old granddaughter. Pretty full life for a 48 yr old. They said I wouldn't ever have any kids, go figure!

Hi, In one of the first messages, you indicated that you thought you might be having symptoms of a recurrence. If I read the last few messages correctly, your markers via blood tests are in the normal range? What symptoms are you having now and are you going to get a ct scan? Why not an mri? I think they are a little more conclusive and I think they don't have as many concerns with them since they use little or no radiation. Not sure about that. I know that ct scans do have a considerable amount of exposure to it though. Well, I am going to be on vacation in Pennsylvania for the next 2 weeks. When I get back, I will revisit the idea of chemo with another set of ob/gyn oncologists. I am still not convinced that it will help. I think it may have had better chances if I had had it the first time around like you did. Would you do it again if you had a recurrence? I hope you are doing well and that you are healthy and happy. I will check my email when possible during our trip. Hope to hear from you again.

If I had a recurrance, I would probably have the chemo as I think for recurrance that is probably the protocal.  You mentioned something in one of the last postings.  You stated that you were dx stage 1A, but then you said you read that the tumor had ruptured.  That is always a stage 1C from my understanding.  Also did you have a TAH when dx?  I was confused as you stated that you went on to have children.  Anyway, have a great time on your vacation.  Talk to you later.

Hi again! I just got back from vacationing in PA. Yes, I did say that I was dx with stage 1a. I also did not look at the surgical or pathology notes until recently. That is when I found out that there was a "rent" in the cyst that happened when they removed it. It didn't burst, they ruptured it during the surgery because they didn't know what they were doing. The doctor that was called in to stage my cancer wasn't even an oncologist. I just found that out as well. In the latest surgical notes from the surgery on Aug 5th, the doctor refers to my cancer stage as having been a 1c. He didn't say it was upgraded to a 1c, he simply refers to it as though that is what it was from the beginning. He also made a few ill remarks about the doctor that did my first staging. He said he had to bail him out recently during a surgery that he got in over his head on. I am looking for a good lawyer at present. Isn't 1c always treated with chemo? I was totally willing to do it the first time around but I am reluctant to do it now since the cancer has had more than 5 years to spread its cells around and they don't know how effective it will be at this point. Tell me what you think. I feel pretty good right now and I just don't want to be sick any more. I have felt ill for the last 6 months and felt a lot of pain from the tumor that was wrapped around my colon. They kept telling me I was constipated. Yeah! Try and do your business when you have a tumor squishing your guts. Any way, I don't know what to think. I have more appointments with other Kaiser oncologists in a different office this week. I am angry because it just feels like they are all posturing and not being very up front about anything. I have not even said anything about a lawsuit, but think that they know it's coming since I immediately ordered all my medical records and films for the last 10 years. They put off my first surgery for over 3 years when the ultrasound clearly showed a 7.5 mm cyst that was hemmoragic. It was 10 cm when they removed it. They did do a total hysterectomy at that time. I had polycystic ovaries and had the right ovary and fallopian tube removed at age 14. I had 3 additional abdominal surgeries and had 5 children in between the first 2 operations and the last 2. I have had 7 major abdominal surgeries since age 14. Only 2 of them showed cancer. Maybe it was cancer and they just didn't recognize it from the beginning. I am not sure. I have had problems in that area all of my life. Started having babies at age 20 and had last one at almost 38 yrs of age. Quite an age span but no regrets. Please tell me what you think. You have already helped me in many ways by telling me about yourself. I have more hope now than I did before. Thank you for that. Sincerely, Renee