I'm a 43 year old woman, just diagnosed with granulosa cell tumor of the ovary. After surgery to remove the 5cm cyst and my right ovary I was staged at 1c (cyst ruptured during surgery)
The gyn/onc has suggested to remove the other ovary but after a lot of research I'm wondering wether I should be doing a full hystorectomy, as well as more therapy..
What is your opinion?
(my pathology report stated...occasional mitotic figures, no evidence of striking cytologic atypia)
Below is my advice about some things you should do based on our currently going through exactly what has happened to you (and experiencing metatasis after a single spillage event during a negligent cystectomy on a similar-sized, unilateral, ovarian GCT):
1. Start monitoring your levels of the following blood markers: inhibin A, inhibin B, and MIS. In AGCT, these should, in the majority of cases, be elevated in the presence of tumor and may provide you with early detection information and/or treatment monitoring. It would help to draw all 3 at the same time and have them processed in a consistent way, since the inhibin tests, in particular, can be variable and require careful calibration.
2. If there is any frozen serum from blood tests relating to your surgery (it may be stored at the lab), request that it be used to check your baseline (pre-operative) levels of the 3 blood markers in #1. Don't wait on this, since most labs won't store blood for more than 30 days.
3. Get an abdominal CT scan for baseline staging. Also, at your discretion you can include a chest x-ray, since future metastasis of GCT to the lungs is not out of the question, but not necessarily common. Talk to your doctor about this.
4. If they did not do surgical staging during the first operation to remove the ovary/fallopian tube, a gynecologic oncologist would probably recommend that you have full surgical staging, including an omentectomy and lymph node biopsies (and possible hysterectomy/left salpingo-oophorectomy). NOTE: It is possible to have this surgery done via laparoscopy rather than laparotomy (assuming no removal of the uterus), which means a much shorter hospital stay and recovery time. Omentum and lymph node biopsies are standard protocols for staging ovarian cancer. However, GCT does not commonly spread to the lymph nodes, so a conservative lymph node biopsy might be better than an aggressive one if your abdomen looks clean to limit the risk of lymphadema (leg swelling) or related complications later on. If/when you have staging, question the surgeon on this point.
5. Removal of the uterus and remaining ovary/fallopian tube really depends on a number of factors. For example, do you want to try to preserve fertility? Is your staging clean, or are the other ovary and uterus affected? Is there spread to the peritoneum? Do you want to try to eliminate the disease with chemotherapy if your staging is positive and have a second look staging to determine if removal of the uterus is necessary? If you no longer desire to have children and/or want to be very aggressive, then removing everything could help to limit your risk. Since you had a 5cm tumor, you probably weren't having normal (or any) periods for the past 5-10 years (or longer?), and now you probably are, with normal chances for fertility even though you only have 1 remaining ovary. So, it might be a consideration. GCT's antagonize FSH from the pituitary, preventing ovulation, and may have other temporary or permanent hormonal effects. A normal menstrual cycle should resume within 1 to 3 weeks after the surgery to remove the GCT. If fertility is a concern, it is simple to get an ultrasound and progesterone test to confirm ripening follicles/ovulation (even at 43 where you may or may not be peri-menopausal).
6. With all due respect to other posters here, you should treat your condition with extreme seriousness and not be lulled by your own denial or the potential for a benign diagnosis, assuming you have typical GCT presentation (microfollicular/macrofollicular, etc., call-exner bodies, light staining, grooved nuclei, inhibin stain positive, etc.) and not some other form of sex cord-stromal tumor (like a thecoma).
ALL GCT's have malignant potential and you can't determine it from mitotic rate or atypia in the pathology report. There is no other way to know if your GCT is malignant except to have staging and wait and see. Unfortunately, while a negative staging is an optimistic sign, it does not rule out the possibility of future, late recurrence, which is why you need to start doing the tumor marker monitoring and continue for the rest of your life with some reasonable frequency. Vigilance and follow-up are the key to rapid detection. Delayed recurrence is fairly common in advanced stage GCT's (ie. stages II/III).
AGCT has a high affinity for the peritoneum, and if there was spillage, a likely location to expect peritoneal seeding/early metastasis during subsequent staging would be the right posterior cul-de-sac (where the ovary used to be located). Find out from the surgeon exactly where the spillage occurred and how it was handled. After spillage, the surgeon no doubt irrigated your abdomen, which could be indicative of additional seeding elsewhere.
If your original procedure was via laparoscopy, find out how the cyst was removed. The cyst may have been morcellated (cut into pieces) and then removed and the pieces may have come into contact with your peritoneum. Get the operative report, the pathology report, including the cytology of any peritoneal washings during the initial surgery, any digital stills of the procedure, and have a frank discussion with the surgeon to help facilitate more effective surgical staging. If there are no obvious metastatic sites, then the surgical gyn/onc should resort to standard biopsies of the most common metastatic locations.
7. If your staging is positive, the next likely recommendation (no matter what you decide about your uterus and fallopian tube) will be some form of chemotherapy. You may also opt to do chemotherapy even if your staging is negative. The typical recommendation is BEP (Bleomycin Etoposide Cisplatin) or Carboplatin/Taxol. Platinum agents are what have been shown to be successful. Carboplatin/Taxol is less toxic than BEP, but BEP is the standard treatment. Chemotherapy may result in Premature Ovarian Failure and this is probably true of any regimen (BEP, C/T, CAP, BVP, etc.). However, at 43, this may be less of a concern for you.
8. Depending on what you read, GCT is either at the 2-3% end (ie. Blaustein's Pathology) or the 8-10% end (ie. various studies) of all ovarian cancers.
Good luck with everything. You are now on the path of self-advocacy and need to be as informed as possible so that you can make effective and sensible choices regarding your short and long-term treatment. It would be a good idea to seek treatment right away.
The worst part prior to our staging (which showed pelvic spread at numerous sites due to the spillage) was the ambiguity of not knowing what might happen. Based on our experiences and what we have learned along the way, my unfortunate concern would be that you have peritoneal seeding, since your case seems similar to ours.
I am having granulose theca tumour since 1990.
Now I am having surgeries to get this tumour removed each year.
If anybody has a cure please email since chemo is not working or anybody can suggest a good surgeon preferably in India.
My email id: ***@****
My Name: Kusum Bansal
I was diagnosed with granulosa cell tumors in 2004, when i was 21. I was fine for almost 4 years and now am going through it again. I appreciate all of the info above. I was so young and uninformed the first time, I was just happy to be alive. This time is a little more scary. Thanks again.
Just had a TAHBSO during which they 'found' one ovary with early stage granulosa of the ovary which MD said was contained to the ovary, and too early to even stage, and the blood level of some test he took in surgery was barely detectable. 40/40 lymph nodes were negative and all peritoneal washings were clean. Uterine was endometrial hyperplasia no CA there. He said the surgery IS the treatment, and I will need close followup every 3 months from now on. That to me 'close follow up' doesn't sound like a 'cure'. His PA told me prior to his conversation I would be getting 3-6 cycles of chemo, I am confused now.
my mother was diagnosed with GST in 1998. At that time she had total hysterectomy. She was monitored at first pretty frequently, then for some reason unknown to me, she wasn't getting her screenings as regularly. Two weeks ago they removed a GST from her liver, and post op she was in alot of pain that would not subside so they repeated an MRI and found 6 other solitary GST's in the pelvic cavity. She is getting a PET scan today and is scheduled for surgery on april 8. I wish we would have known about this inhibin test which she did not get until last month when they suspected the regrowth on her liver. If you have GST make sure you are hypervigilant about screening.
I have had more information reading your posting than i could find any where else.
I had two ops for granulosa cell approx 4 and a half yrs ago. I had no further treatment, ie chemo or anything as they said it was not affective in this form of cancer. I have not really had much info from my surgeon or oncologist. They just seem to ask how are you feeling, how are you, how have you been, you must know what its like! I got so tired of it all, i just stopped going for my check ups about 2yrs ago. They have never done any further blood tests or scans since my ops. I am really surprised after reading everything here. Have i just been fobbed off? Should i be having these tests done? I have had two internals since my ops, and other times just examined my stomache, felt about for lumps i expect. I am thinking of going back to my doctor and asking for the blood tests you talk about, inhibin A and B and MIS. Do you think they will do them? Will these show up if i have got any further re occurance of the one granulosa cell tumour i had on my right ovary?
No one tells you anything, and my prognosis was, we cant be sure, but they reckoned i would prob not get anything for at least ten yrs. what a joke!
I was told that it also depended on whether i was optimistic or pessimistic! What exactly does that mean?
My wife's gyn/onc is strongly suggesting HIPEC treatment, even saying it's a possible cure after metastatic recurrence. HIPEC stands for Hyperthermic Intraperitoneal Chemotherapy and you can read about it here: http://www.appendix-cancer.com/Peritoneal%20Chemotherapy%20and%20Intraoperative%20Peritoneal%20Hyperthermic%20Chemotherapy.htm .
It's still in the clinical trial stage, and so still experimental/controversial. Does anyone have experience or opinions on this form of treatment for GCT?
Wow - it's been a long time since I wrote that post in 2003. I will post an update shortly. We have just passed our 5-year anniversary (to the day on Friday the 13th), and my fiancée now appears to have full remission.
After a long, grueling period of uncertainty, extremely difficult chemotherapy, multiple surgeries, our own custom suppression regimen, and isolated recurrence, things are improving and returning to normal. We also feel like we have a very strong, calibrated understanding of what to do and when to do it should anything come back in the future. It's a huge relief to be free of the ambiguity.
We have accumulated a lot of info and had some treatment success. Some of the info may help. I hope to write a series of articles on our cancer journey, including the results of our somewhat experimental treatments and other information of note.
Until I get to the update (hopefully soon), if anyone has immediate questions and can provide some background details/context, feel free to PM me. Good luck to all of you.
Just some words for Significant Others and family members (but certainly not to the exclusion of those of you with GCT): hang tough and be sure to give yourself a break whenever you can. It's easy to succumb to fear, panic, grief, etc., with all the unknowns surrounding you. Your partner with GCT needs you, but you also need to take care of yourself, family, and friends. Remain vigilant, run interference, process the emotion when it surfaces (together, if possible), ask for help from those close to you, delegate non-essential tasks, watch all medical personnel like a hawk, try to have someone at the hospital around the clock during hospitalization stays and periods of risk (nurse response to issues can be slow, especially on the night shift - and you can help maintain the highest standard of comfort for your partner by being there), question everything, and inform yourself as well as you can.
Try not to take medical advice at face value, seek out the best treatment and diagnostic procedures, and find physicians and other sources you can trust. While the "Standard of Care" is a medical reality, it is not necessarily your friend in certain cases.
Become as strong as you need to be to get through treatment and beyond - it's an ongoing process. For me, I guess it was just the constant refusal to give in no matter what - we became strong little by little. There's no question that some things are very hard to face, but there is a way to face them, albeit with the onslaught of related emotions. You may or may not be able to change the outcome, but you can certainly impact the journey and arm your partner with the information to help her (and both of you) make the best possible choices, hopefully with great medical counsel.
Most of all, you can just love her - it will take whatever shape the moment requires within the scope of whatever you can provide. And, having gone through everything, the good news is that I'm not really sure there's an upper limit on that kind of approach. ;-)
I will celebrate 18 years of remission on Oct. 18, 2008 after having GCT. I was told by my onc that the good news is that GCT is slow growing and the bad news is no one has lived past 10 years with any stage of the disease. I had a stage one GCT 8cc wide in my right ovary and had a total hyster.. There was no follow up or chemo. recommended. He did give me a great piece of advice to eliminate my stress. On my10 year anniversary I revisited my ONC and he ask me why I didn't come back to see him, to follow up . I was dumb founded. All I can say is its your life, your body, your mind, your soul, listen to yourself and remember doctors are not gods. Stand up for yourself if you don't who will? www.cateyes_ded***@****
I am 27 years old and had what we thought to be an 11 cm hemoraging cyst at the end of March. No one removed it at the time. We were seeing a reproductive doctor due to the fact that I have not had a period on my own in a few years. My FSH and LH levels were always reversed and threw my doctors for a loop. Between my GYN and reproductive doctor we decided to wait and see what this cyst would do allowing us to preserve my ovary. So for the past four months I have been in pain and discomfort. I started feeling sick again a few weeks ago, and decided it was time for a second opinion. I went to another GYN and had a 3D ultra sound performed. He immediately said it needs to be removed, so three weeks later I was in surgery. He ended up not removing the "cyst" or my ovary, based on my request to keep the ovary if at all possible. The next week following my surgery he calls to tell me it is a GCT, but swears up and down it isn't cancer, but acts like cancer.
The next step was to do a CT scan and follow up w/ GYN Onc. So I meet w/ her and she says she knows exactly what is going on in my body, and it isn't too serious. So another 5 weeks will pass before they are to remove my right ovary w/ the mass, do a lymph node biopsy, some other kind of biopsy, and an abdominal wash. I am scared, and have no idea what is going to happen. I've been married for 6 months. We were back from our honeymoon for one week before this doctor dance started. So it is nice to read these posts, and very informative. I greatly appreciate it.
I may have a recurrence of ovarian GCT 7 yrs after hysterectomy/chemo.
I'm 55. It was Stage 3, having spread to abdomen. Got thru chemo ok & have been healthy. Was pronounced "cured" 11/07. Had routine CT scan 1/08. My oncologist never called to tell me that scan showed 5 mm mass & recommended biopsy. I should have called for results, but didn't think to. Have had stomach problems all yr & had CT scan 8/08 which shows 6 mm mass & 2 smaller new masses.
Bummer, huh? Further treatment will depend on post-surg pathology reports. We'll be tracking serum inhibin level. All my tests, chest X-ray & mammogram are normal range except eGFR which is 48. It can be a tumor marker. Interesting comment re ovarian cyst. I had one burst in ovary several years before GBT discovered there.
Would REALLY like to hear about "suppression regimin" and any other suggestions/experiences. I have extremely strong determination to blow out my 85th birthday candles, so want to do everything possible to get there.
When I first researched GCT in 2002, found little info on survivors other than a poodle and a horse, both healthy. Don't wish this on anyone, but good to have others to consult with. Thanks very much.
My Mother was diagnosed with granulosa cell cancer over 20 years ago, and they removed her ovaries. After a chest x ray 17 years later it appeared again in her lungs and her liver. The ONC said she would die from old age before she died from the cancer. I lost my Mother on the 10th of November 2008 to ovarian cancer at the age of 77. Only 3 years after the ONC told us that. She went to the hospital with bronchitus and was told by the Dr. on call that that she was in the final stages and had 1 to 3 weeks left to live. I am a little disappointed with the family Dr. for not telling her or the family of this. She had a full body scan done in May of 2008 and all we were told was that the cancer had flared up.
i was diagnosed with a 3C granulosa tumor in July of 07, following surgery where i had the ovary rupture. I then had follow up chemo. I now go and get checked every 3 months for the blood work and a CT Scan every 6mo. Well, now my paper work was sent to a specialist in Huston TX. and he read it over and is saying that my tumor was NOT a 3C, but in the 1 category and i didn't even need the chemo. Can he , even though a specialist in this field, actually diagnose that it was only a 1 when he wasn't the one that did the surgery?? And the doctor that did diagnosed 3C??? I am going to see the doctor that originally diagnosed in a few days and have many questions on how he came to the conclusion. I have a law suit riding on this as 20 months prior to the ovary rupture and surgery i had a doctor tell me i didn't even have ovaries. I guess the lawsuit is no good if he didn't do damage, such as the going from 1 to 3. What aabout all the pain and suffering and everything else? I just don't understand??? Anyone have an opinion on this??
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