granulosa cell cancer/ testing

[kristaparis1]

by kristaparis1, 21 hours ago
Hello

I have granulosa cell cancer. In December of 2007 I had a  complete hysterectomy and did not have chemo. I was told by oncology that my prognosis was excellent and was in no danger of spread.

My question is.......I  would like to have the blood tests done  yearly but they do not recognise the testing here and must use other terminology. I understand the best blood work to have done on a yearly basis is CA 125 (which we have) and Inhibin A and Inhibin B....but my lab does not know what the inhibin blood test is. Is it possible that we use another term for these tests in Canada and if so what is the terminology.

thank you , krista

[kcd86]

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 .
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 estrogen, and symptoms related to hyperestrogenism are common. I am curious to know how yours was discovered, what were your symptoms?
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. 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. I am not sure what the Inhibin would be called in Canada. 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. Maybe if you can explain exactly what the test is for and what part of the ovary it may narrow down what the blood test is called
Regards,
Kevin

[Winikor]

Thank you for this valuable information.   I hope your wife is doing well.

[Ichoosejoy]

I was diagnosed with Granulosa Cell his March.   My oncologist is watching Inhibin A, Inhibin B, Estridol and CA125.  Be aware that many times Granulosa will not change any of these markers, you could have a recurrence and all markers be stable.   My onc checks my blood evry 4 months.  I have read articles that suggest INH B is a better marker for Granulosa.  The problem is, there are so few of us with this tumor, that there is not enough research to be definitvie about anything.  These tumors have a tendency to recur after 10 or even 20 years.

[Winikor]

How are you doing now?  I haven't been on MedHelp for a very long time.  In 2011 I had a Hysterectomy in order to remove a tumor that was next to my uterus.  I was told this wouldn't come back, that it was a Spindle Cell fibrothecoma.  In 2015 I had a cat scan at the hospital due to Diverticulitis and they found a large tumor again in my pelvis.  It was finally removed in 2017 after seeing 3 different oncologists.  Surgeon told me this was a fibrothecoma and not to worry bc it wouldn't come back.  What he didn't tell me was that he had to peel this grapefruit size tumor from my colon....my colon ripped and they had to sew it up.  In 2019 I needed to have another cat scan of my pelvis and again, a new tumor.  I went to Cleveland Clinic and after seeing 2 oncologists there [a gyn and a gastro) they both decided that they would not due the surgery bc it was very risky.  I was told by a friend doctor to go see this gyn oncologist at Baptist Hospital.  He said that he doubted my previous pathology reports were accurate so he sent the slides to John Hopkins.  It came back as ovarian sex cord stromal tumor.  I read that this tumor has a 5 to 10 year life expectancy.  The oncologist put me on a Hormone blocker but it didn't help, as a matter of fact, it metastized to my lungs.  December 29, 2021 I had double robotic laparasscopic surgery.  The thoracic surgeon removed 2 tumors , a large part of my left lung and some lymph nodes.  When he was finished  and I was still under, the gyn oncologist removed 2 tumors from my pelvis.  At Baptist and anywhere I've been to here in FL they don't know enough, if anything at all about this tumor.  It's extremely rare, especially for women.  Men do get testicular sex cord stromal tumors.  My gyn surgeon said to start chemo but I wasn't going to do that unless I saw data showing that chemo works on this tumor.  I had an appointment with Sloan-Kettering last week and the oncologist said they don't see this type of cancer much, maybe a handful.  But he did say that data showed that chemo does not work on this type of cancer.   I'm now 11 years  in with this time bomb in my body.  The CA125 came in high but I'm being treated now by a top oncologist at the University of Miami who also agreed with no chemo and no radiation.   He said he does have one other patient with this, she's 80 years old, has had it for 20 years but at this point it metastized everywhere.  Chemo didn't work for her.  Right now I'm on the wait and see treatment.   Cat scans every 3 months and monitor.  It's been 7 weeks since the surgery.  The lung part of the surgery was very tough for me.  I'm still not ok.  I will discuss with my oncologist in May the different tests I read about here.  Thank you all for sharing.  I've learned a lot from reading your suggestions.  I hope to hear how all of you are doing now in 2022.

[somair]

A related discussion, Granulose Cell tumor was started.

[kcd86]

The below Hospitals and labs were listed in a journal article with regard to the use of Inhibin A testing
Diagnostic System Laboratories (Canada) Inc., Toronto, Ontario, Canada; Department of Laboratory Medicine and Pathobiology, Faculty of Medicine, University of Toronto and Mount Sinai Hospital, Toronto, Ontario, Canada