1. < Gynecologic Cancers
Profile picture for scoobydo2017

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.

Profile picture for Helen, Volunteer Mentor
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Aug 8 2:02pm
In reply to @juarez05 "I had a similar circumstance to you all 7 years ago. As I was told by..." + (show)
Profile picture for juarez05 @juarez05

I had a similar circumstance to you all 7 years ago. As I was told by University of Kansas Cancer Center and a second opinion at the Mayo Clinic that my full hysterectomy and removal of multiple lymph nodes was successful. Chemo was not recommended for me and I was told to stay away from hormone therapies. Recovery was only for the surgery. I felt positive and good. However, granulosa cell is aggressive and has a high rate of return somewhere, sometime - but in a majority of cases, I was told and read, it is within 5 years. I was watched and tested 2x per year with blood draws for Inhibin A and B. Passed 5 years with flying colors and went to an annual exam and blood draw - with the year 7the year blood draw, my inhibin A came back with high 800's and inhibin b was less than 10. Took a second blood draw a 5 days later and inhibin A was now 37 points higher, but no change in inhibin b. Did a pelvic CT scan and results came back without any concerns. On Monday I will have a "thigh to eye" PET & CT scan and also have an MRI scheduled for early September. I feel great, no pains or issues. Should be an interesting story. I do feel my care team and KU is doing all they can. I am researching for the "just in case" nothing is showing on the various scans, for other methods of determining what is causing Inhibin A to rise.

Jump to this post

@juarez05 Hello, and welcome to Mayo Clinic Connect. It sounds like you certainly did all the "right" things by going back to KU for your periodic cancer surveillance appointments. It's great that you passed that 5 year mark that is considered so important. So now you return for annual exams? Again, it's worth saying that this rise in your blood draw for Inhibin A and B were found because you return for your appointments.

I do hope that after your imaging of PET/CT on Monday, August 11 (?) that you will have more information. This is an ambiguous situation as you await imaging. How fortunate that you feel that your cancer care team and University of Kansas Cancer Center are doing everything possible for you.

How are you feeling about all of this?

REPLY
Profile picture for juarez05
juarez05 | @juarez05 | Aug 8 2:58pm

Thank you for reaching out @naturegirl5. I am feeling good, confident and know that early detection is my best weapon.

REPLY
Profile picture for Helen, Volunteer Mentor
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Aug 8 5:26pm

@juarez05 That's good to hear. When you hear back about the imaging PET/CT results will you please return and let me know?

REPLY
Profile picture for lilypearl
lilypearl | @lilypearl | Aug 9 12:31pm

Can exogenous estrogens cause elevated Inhibin values without having cancer per se??
Exogenous estrogens outside the body like from foods (dairy), exposure to pesticides, cosmetic and shampoo ingredients, essential oils?
Endogenous estrogens from inside the body produced by the adrenal glands, by adipose (fat) tissues esp. in the abdomen.
I use goat milk based lotions (Beekman 1802) and wonder if I'm getting excess estrogen from it when I am not supposed to be exposing myself to estrogen.

REPLY
1 reply
Profile picture for Helen, Volunteer Mentor
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Aug 9 4:36pm
In reply to @lilypearl "Can exogenous estrogens cause elevated Inhibin values without having cancer per se?? Exogenous estrogens outside the..." + (show)
Profile picture for lilypearl @lilypearl

Can exogenous estrogens cause elevated Inhibin values without having cancer per se??
Exogenous estrogens outside the body like from foods (dairy), exposure to pesticides, cosmetic and shampoo ingredients, essential oils?
Endogenous estrogens from inside the body produced by the adrenal glands, by adipose (fat) tissues esp. in the abdomen.
I use goat milk based lotions (Beekman 1802) and wonder if I'm getting excess estrogen from it when I am not supposed to be exposing myself to estrogen.

Jump to this post

@lilypearl These are good questions but I don't know how to answer them. I'm also not sure who to tag within Mayo Clinic Connect to respond to your post.

Do you work with an Integrative Medicine (IM) physician? I have an IM physician whose speciality is gynecological oncology and I'm pretty certain she would know if there is information or research on your questions. My doctor recommended Consumer Lab (not to be confused with Consumer Reports). Unfortunately, you have to join in order to use this website and I did decide to join. I have found the website to be most helpful:

ConsumerLab.com

-- https://www.consumerlab.com/

Where have you looked for answers to your questions?

REPLY
1 reply
Profile picture for lilypearl
lilypearl | @lilypearl | Aug 9 5:25pm
In reply to @naturegirl5 "@lilypearl These are good questions but I don't know how to answer them. I'm also not..." + (show)
Profile picture for Helen, Volunteer Mentor @naturegirl5

@lilypearl These are good questions but I don't know how to answer them. I'm also not sure who to tag within Mayo Clinic Connect to respond to your post.

Do you work with an Integrative Medicine (IM) physician? I have an IM physician whose speciality is gynecological oncology and I'm pretty certain she would know if there is information or research on your questions. My doctor recommended Consumer Lab (not to be confused with Consumer Reports). Unfortunately, you have to join in order to use this website and I did decide to join. I have found the website to be most helpful:

ConsumerLab.com

-- https://www.consumerlab.com/

Where have you looked for answers to your questions?

Jump to this post

I been researching this possible connection for awhile after my post menopausal Mom and my neutered male Lab tested positive for elevated estrogen levels.
My Lab got diagnosed with lymphoma. Both have since passed away.
Now my AGT, FIGO IC2 June 2025.
GynOnc says I cannot have estrogen therapy (because of AGT, common sense) for my horrible hot flashes/night sweats.
No I have no IM Onc doctor. Good idea.
I'm on Medicare. Not many Docs accept it outside conventional medicine.
Thank you for your feedback.

REPLY
Profile picture for lilypearl
lilypearl | @lilypearl | Aug 9 5:26pm

Correction GCT.
Ugh.
Not America's Got Talent tumor.

REPLY
View MoreView Less
Please sign in or register to post a reply.