This sounds to me like it *could* be a Granulosa Cell Tumor (I also read your post on the expert forum). You need to see a gyn/oncologist for a consult and see what they say - I would say that is **imperative**. Granulosa cell tumors can cause disruption in your cycles...I was told I had PCOS for years...tunrs out I never had it, I had GCT - ovarian cancer. If it is cancer, you do not want it removed peice by piece, that may cause it to spread beyond the ovaries. Do not allow anyone to operate on you until you have consulted with a gyn/onc.
Thanks for the reply!
PCOS matches my entire life history of physical and bio symptoms and tests, so it still may be a valid diagnosis, but this seems to have added on top of that sometime in the last few years. But given the left ovary was enlarged (to my memory) 10 years ago, who knows you may be right and whatever tumor may have been present then too. I'm planning to try to see if my memory on where the PCOS ultrasound was done is correct and see if I can get that info from 10 years ago for comparison on size.
Right now I do have a team of doctors working on figuring it out including gyn oncologist, repro endo, and medical endo. I've still got some input needed from the oncologist and hoping he can shed light on the specifics of his take on things after the Labor Day holiday. Makes sense to me a cancer can't risk spreading with piecemeal removal, as you say. So far nothing has been done to ID type of tumor or pinpoint it's exact location or if it's deemed likely malignant. From what I've read tumors in both ovaries simultaneously isn't typical but then again not impossible of course.
I agree - I'm trying to explore all the options before anything gets removed! Thanks for your take...I've been researching online and will spend some reading time on the Granulosa Cell Tumor variety to see how it could play into my history versus PCOS...as well as continue to monitor this thread =).
I am sorry you have to go threw this it is very stressfull to have this constantly hanging over your head. My wife was recently Dx with granulosa Cell cancer( GCT) Jan 2010 .
Ichoosejoy is absolutely correct that you should be seeing a gyn/oncologist, preferably a hospital that has high volume gyn/onc patients. If you do have granulosa cell cancer which is very rare you will want a gyn/onc/surgeon experienced with this type of gyn cancer. Studies have shown that patients treated by a gyn/onc have a better outcome than patients who don't.
Tests like sonograms, Cat scans and MRI's along with blood tests like CA125, Inhibin A&B, MIS and CEA are just used as a guides for the Dr's to help assist in making a diagnoses(Dx). The blood test CA-125 is a test used by Dr's as a guide to determine if you have the most common form of ovarian cancer, approximately 80% of all ovarian cancers are epitheal ovarian cancer which is cancer of the cells on the surface of your ovary. Please keep in mind that CA-125 can be elevated if your menstruating and some other cuases of inflamation..
There are other types of ovarian cancer that are hormone driven and depending which form a person has there will be excess symptoms of that specific hormone. This is the type my wife was Dx with granulosa cell ca. These group type are called sex cord -stromal tumors. These type of tumors have specific markes that the Dr's use just like ca-125 to aide in their dx of epitheal ovarian ca. They are Inhibin A&B and MIS. Please keep in mind if and only if you have a dx of these form of tumors there is a missconception that these tumors are always benign, which is completely false> They are just slow growing tumors as opposed to epitheal ovarian cancer.
Granulosa cell tumors often produce excessive hormones estrogen/testosterone, and symptoms related to hyperestrogenism/hypertestosteronisim are common. My wife had excessive bleeding after she stopped having her periods.My wife's Dr's in Sloan kettering in NYC said she also has nothing to worry about because they removed the ovary fully intact(which is imperative). Removing the ovary fully intact is an indication for possibly no further tumors will develop. They also said no further testing is needed. I have her Inhibin A&B done every 6 months. Inhibin is the blood test for estrogen levels.
The hormonal activity of granulosa cell tumors permits the use of a variety of serum tumor markers in the diagnostic evaluation. Clinically, the most useful serum marker for granulosa cell tumors is inhibin, a peptide that is produced by the ovaries in response to follicle stimulating hormone and luteinizing hormone. Inhibin usually becomes undetectable after menopause, unless produced by certain ovarian tumors,ie; granulosa cell tumors.
An elevated inhibin level in a postmenopausal woman or a premenopausal woman presenting with amenorrhea and infertility is suggestive of the presence of a granulosa cell tumor, but not specific. Although most commercial laboratories only provide assays for inhibin A, serum levels of inhibin B seem to be more frequently elevated If available, we suggest the use of assays that detect both isoforms.
Estradiol was one of the first markers identified in the serum of patients with granulosa cell tumors, however estradiol is not a sensitive marker for the presence of a granulosa cell tumor. Approximately 30 percent of tumors do not produce estradiol.
Mullerian inhibiting substance (MIS), which is produced by granulosa cells in the developing follicles, has emerged as a potential tumor marker for granulosa cell tumors. As with inhibin, MIS is typically undetectable in postmenopausal women. Although an elevated MIS level appears to be highly specific for ovarian granulosa cell tumors this test is not available for clinical use.
Post with any other questions you may have as this site has some very knowledgeable and helpfull people on it
I would immediately find a good GYN/Oncologist surgeon. I am not suggesting what you have is cancer but studies have shown that treatment of ovarian cancer by nongynecologic oncologists and by low volume surgeons is associated with suboptimal surgical management. I would reccomend going to a large tiertiary hopsital where they see large volumes of patients. This is not to make you worry even more but to make sure that the Dr who treats you has vast experience with diagnosing and treating various types of GYN / Onc issues if that is what it turns out to be. If the Dr wants to remove the cyst/mass via laprascopic procedure PLEASE make sure they have much experience with removing these INTACT! All too often I read posts from patients who say their Dr thought it was a cyst and removed it haphazardly causing a rupture and seeding of the pelvis with cancer cells, only to be found on pathology post removal.
Next: From experience I would be asking for an MRI of the abdomen/pelvis and have it read by a gyn/onc radiologist ,MRI's are very precise when read by a Radiologist that specializes in GYN/ONC, My wife went to a radiology practice that does all types of MRI's and the Radiologist read her MRI as a fibroid. I then took her to Sloan Kettering in NYC to see a GYN/ONC surgeon Dr Carol Brown who had the MRI repeated by a GYN/ONC Radiologist who called her DX to the tee which was confirmed after surgery.
The best advice you see all over these posts is you have to be your own advocate, be aggresive and stay on top of your phycicians. Get copies of all your tests/results as you are entitled to them. Post with any other questions you have this site has some very knowledgeable people on it. I wish you all the best.
Thanks kcd86 for the posts of info! I do have a gyn oncologist involved (waiting to hear his response to the testing). The point on the radiology review is a good one, and I'll have to ask about that, to ensure the person(s) reviewing the MRIs are versed in gyn/onc!
I finally receive the call from the gyn oncologist today, and it was (at least for now) a good potential bit of news. He indicated that they actually are still trying to get some missing info from the vein sampling report and he doesn't feel what they have is conclusive to say both ovaries are problematic....and he's thinking the normal medical endocrinologist is the big next step given some of the simultaneous issues in both sides, etc. So far, he doesn't feel it's likely to be cancerous.
And thanks kcd86 for some great points....I confirmed the MRIs were only read by normal radiologists, also was able to dig up and get copies of some 2004 and 2001 CT Scans for abdominal/pelvic for a comparative, and talked about it all with the gyn onc. He was all for me getting copies of it all to the interventional radiologist who did the ovarian vein sampling, as that is the gentleman this gyn oncologist consistently works with for cancer cases.
So, a bit of hope perhaps, since the gyn onc seems to think a general endocrinology issue is possible for this, although I know it's still a possible long shot given how extreme the testosterone levels are.....
Finally got better info on results from ovarian vein sample. It's a little different from how I depicted (confusion in phone/verbal conveyance of numbers) and has 2 additional figures I didn't have originally.
Distal Vena Cava: 514
LOV vein: 314
ROV vein origin: 317
Proximal Inferior vena cava: 789
They couldn't get 100% into the R ovarian vein. So, both ovaries are actually producing similar levels of testosterone. I also saw a medical endocrinologist (vs reproductive one) yesterday and she's running various tests to try to see if this could be Cushing's or any other endocrine/thyroid/pituitary based causes. She also mentioned possibility that perhaps my PCOS-related insulin issues might have triggered ovarian cells to shift to the testosterone production somehow. Overall though, she seemed to be echoing the gynecological oncologist, that with no visual tumors on scans, issues occurring on both sides simultaneously, and now given both sides seem "equal" in their production....seems doubtful it is tumor or cancer-driven.
Investigation continues, and if tumor/cancer issues circle back I'll be sure to update here!
I am not sure if this is relevant to you or not, but here goes....I had extremely high testosterone levels in 2006. Ultrasound found a small "cyst" on one ovary. I had it removed by a terrific gyn/onc. It was a stromal leydig cell tumor. From doing searches on PubMed, it appears this type of tumor is very rare in women. From what I can tell from my research the level of testosterone is not necessarily related to size of tumor in those weirdo testosterone secreting ones. In other words, the tumor doesn't have to be big to secrete a lot of testosterone. There are several other types of ovarian tumors or changes that can secrete lots of testoserone. Some are benign. If you have not done so already, you might want to do searches on PubMed to see what abstracts are out there that fit your individual situation. Just a thought and I hope this helps some. Best of luck to you.
Thanks GreenWoods! I've been looking some every day for various tumors or other conditions...so far no "smoking gun" but hopefully the continued testing and investigation will find whatever is the cause. My MRIs and a 6 year old CTScan are being reviewed by my gynecological oncologist's normal radiologist to see if someone working all the time with gyn onc issues can pinpoint anything in the images that the initial day-to-day test review radiologist might have missed. And tomorrow I get another round of bloodwork and testing done to try to see if any other endocrine factor might be triggering the problem too.
I appreciate your input - it's good point to note that the tumor(s) could be small and still powerful! I hope your experience resulted in a return to normal testosterone levels, too!
I hope the testing went well, and you find out the cause much sooner than later. Yes, my testosterone levels went down to normal. However, my body had gotten so used to 10X the normal amount of testosterone that the precipitous drop to "normal" was quite a shock to my system. I do not think that will happen to you though. The literature does not mention that happening, that I could find.
If you want to compare notes, please drop me a line at my profile page. I think we can leave private messages there -- if I figure out how to work it properly. Another thing, remember to trust your instincts! I did a ton of research like you, got three expert opinions, etc. and after all was said and done I found my intuition had been right on target in so many ways.