Diagnosed with granulosa cell (GCT) ovarian cancer

Posted by scoobydo2017 @scoobydo2017, Apr 18, 2017

Dear Mayo Clinic, I am 48 years old and diagnosed with adult granulosa ovarian tumor (sex-cord). Stage 1C because the 15cm 10cm 7.5cm capsule had ruptured. They thought they were going in to remove a cyst on my ovary. I suffered for 3 days because the emergency room said I had to wait until my scheduled Monday for surgery. I have slight hyperthyroidism and protein S deficiency. My They removed both ovaries/tumor, a full hysterectomy and oophorectomy, removal of one lymph node, the omentum (an area of fat attached to the lower part of the stomach). All samples came back clean from the hysterectomy. My family and I are confused on the issue to follow with BEP chemo. Is there another treatment or do observation? Do you have any data to support that chemo could lesson my risk of recurrence? Percentage of recurrence? @sc2017oobydo

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

cpl | @cpl | Dec 6, 2021

Yes,I had surgery and according biopsy, Hackensack M.C. in NJ recommended chemo because they found some tumor on surface ov ovary(not tube), that is why is stage 1C2, Grade 1. Sloan Hospital does not recommending chemo because they believe there is no evidence that it helps for Granulosa Cell tumors. I was thinking getting more opinion Anderson-Texas, but they don't wanna see me unless I send material to them too-so they do their biopsy. ..and this material went true 2 places already. I was thinking ask Mayo clinic too. Did anyone went thru the same problem? Thank you

Colleen Young, Connect Director | @colleenyoung | Dec 3, 2021

In reply to @cpl "Hi, yes. It is AGCT on right ovary, Grade 1, FIGO stage 1C2.I am really confused..." + (show)

cpl, I agree with @naturegirl5. It is very confusing to get 2 different treatment options from two different medical centers. It might be helpful to get a third opinion. Has surgery been discussed?

Helen, Volunteer Mentor | @naturegirl5 | Dec 1, 2021

In reply to @cpl "Hi, yes. It is AGCT on right ovary, Grade 1, FIGO stage 1C2.I am really confused..." + (show)

Hello, @cpl This is indeed very confusing with two very different recommendations. How is all this affecting you emotionally? Did the doctors explain their recommendations? If I was in your situation I'd be really anxious trying to figure out what to do.

When I was diagnosed with endometrial cancer in 2019 I returned for an appointment with the GYN/ONC surgeon one month later and she gave me a 5-year cancer survivorship plan. She recommended no other treatment at the time and she explained why (FIGO Grade 1 endometrioid adenocarcinoma, Stage 1a).

Are you seeing doctors at academic medical centers with a cancer care center where the care is coordinated across departments? For instance, a relative of mine is getting his care at Stanford University's Cancer Institute in California. I go to Mayo Clinic's Cancer Institute in Rochester, MN. Both of these places are designated as comprehensive cancer care centers with the National Cancer Institute.

Where are you located? Are you thinking of going to Mayo Clinic?

cpl | @cpl | Dec 1, 2021

In reply to @colleenyoung "Hi @cpl, welcome to the group. Adult-type granulosa cell tumor is a clinically and molecularly unique..." + (show)

Hi, yes. It is AGCT on right ovary, Grade 1, FIGO stage 1C2.I am really confused as at one place they want me to do chemo and on another they told me there is no treatment. Please advice. Thank you

Colleen Young, Connect Director | @colleenyoung | Nov 16, 2021

In reply to @cpl "Hi, I am just diagnosed (a month ago)with adults granulosa cells diffuse and microfollicular pattern pt1c...." + (show)

Hi @cpl, welcome to the group. Adult-type granulosa cell tumor is a clinically and molecularly unique subtype of ovarian cancer. The majority of adult-type granulosa cell tumors are diagnosed at an early stage. Has it been determined that your cancer is early stage? Are you seeking a second opinion at Mayo Clinic?

cpl | @cpl | Nov 16, 2021

Hi,
I am just diagnosed (a month ago)with adults granulosa cells diffuse and microfollicular pattern pt1c. I am interested in how your experience went as I have the same as you and looking for a second opinion, possibly even a third. Thank you

Colleen Young, Connect Director | @colleenyoung | Apr 18, 2017

Welcome @scoobydo2017,
Connect is an online community where patients can share experiences and find support from others. I'd like to connect you with other women talking about ovarian cancer. Please meet @joannedb @katethegreat @caf132 @rena42 @pauldale4 @mfell @gill @jfc4 @libbysmom and @mohavegal. You can read more about them in this discussion:

- New to group. Have ovarian cancer http://mayocl.in/2cDi7tK

Scoobydo, for your specific questions, I recommend calling Mayo Clinic and getting a second opinion. Here are the contact numbers at our 3 campuses in MN, AZ and FL http://mayocl.in/1mtmR63

@elenab, you planned to get a second opinion at Mayo for ovarian cancer. Do you have anything to share?

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