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.

@colleenyoung

@cpl, should you wish to consider a second opinion at Mayo Clinic, here is the information to request an appointment or get your physician to make a referral: http://mayocl.in/1mtmR63

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I did, but they did not gave me yet any appointment. The first available is in February and they don't seem like they care much.I am waiting for their response still....

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@cpl

I did, but they did not gave me yet any appointment. The first available is in February and they don't seem like they care much.I am waiting for their response still....

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@cpl How are you doing? Did you get that third opinion?

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Hi,
I recently had a large granulosa cell tumor removed and now I find myself at the crossroads of monitoring or chemo. The tumor was smooth with no ruptures and the doctor doesn't think there are any live active cancer cells but has suggested chemo as a "mop up" and to lower the tumor marker.

As much as I want to just be done with this and move on, I have to think about the possibility of it returning. I have a couple of weeks before I am released from my Ob/Gyn Oncologists, so I will need to make a decision soon. What are your experiences, opinions or suggestions?

From what I have read chemo is not done for a Stage 1C tumor. The tumor marker was still elevated 2 days after surgery. Any idea how long it takes before the tumor marker decreases when removing a large mass?

Thanks,
Tammy

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@tamcbart

Hi,
I recently had a large granulosa cell tumor removed and now I find myself at the crossroads of monitoring or chemo. The tumor was smooth with no ruptures and the doctor doesn't think there are any live active cancer cells but has suggested chemo as a "mop up" and to lower the tumor marker.

As much as I want to just be done with this and move on, I have to think about the possibility of it returning. I have a couple of weeks before I am released from my Ob/Gyn Oncologists, so I will need to make a decision soon. What are your experiences, opinions or suggestions?

From what I have read chemo is not done for a Stage 1C tumor. The tumor marker was still elevated 2 days after surgery. Any idea how long it takes before the tumor marker decreases when removing a large mass?

Thanks,
Tammy

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Welcome Tammy @tamcbart. Making treatment decisions are so hard! Fellow ovarian cancer thrivers @starko @susu2 @odette may be able to share their experiences.

In addition to lower the risk of recurrence, there are other criteria to consider about whether to have chemo or not with stage 1 ovarian cancer. Your oncologist can speak to both the population statistics and to your individual factors, including your age, health status, other medical conditions, and your personal goals and preferences.

You ask a good question about how long it takes for tumor markers to decrease after surgery. I'm not sure if the indicators change immediately or not. That's a good question for your team too. I'd love to hear the answer.

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As I was diagnosed with a different, rare early stage OC subtype, I can’t make any recommendation regarding follow up treatment. I, too, was given different opinions from two NCCN cancer centers. Ultimately, my treatment was modified and in less than two years following my diagnosis, the NCCN had changed their recommendations. I would advise looking at the NCCN guidelines for your specific histology. Also, finding a group of women with GCT may give you valuable support. I have become close friends with women I met online with the same diagnosis as myself. Great progress is being made in OC research. I am beyond five years.

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@colleenyoung

Welcome Tammy @tamcbart. Making treatment decisions are so hard! Fellow ovarian cancer thrivers @starko @susu2 @odette may be able to share their experiences.

In addition to lower the risk of recurrence, there are other criteria to consider about whether to have chemo or not with stage 1 ovarian cancer. Your oncologist can speak to both the population statistics and to your individual factors, including your age, health status, other medical conditions, and your personal goals and preferences.

You ask a good question about how long it takes for tumor markers to decrease after surgery. I'm not sure if the indicators change immediately or not. That's a good question for your team too. I'd love to hear the answer.

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Thank you, Colleen. I meet with my Ob/Gyn Oncologist on Thursday and have a list of questions for her. I also found a support group on FaceBook and they have helped shed some light on GCT the options available and shared their stories. I still have a hard decision to make, but with surgery barely a month ago I am leaning to the monitoring option - CT scan, blood work and pelvic exam every three months. My body hasn't healed from surgery, and I honestly don't think I am mentally or physically ready for chemo yet.

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@odette

As I was diagnosed with a different, rare early stage OC subtype, I can’t make any recommendation regarding follow up treatment. I, too, was given different opinions from two NCCN cancer centers. Ultimately, my treatment was modified and in less than two years following my diagnosis, the NCCN had changed their recommendations. I would advise looking at the NCCN guidelines for your specific histology. Also, finding a group of women with GCT may give you valuable support. I have become close friends with women I met online with the same diagnosis as myself. Great progress is being made in OC research. I am beyond five years.

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I am not sure what NCCN (yes, I'm new to all this) but I'm sure I can locate something with a little research. I have located a GCT support group on facebook. The ladies are amazing and have provided me with information not found online or supplied by my Ob/Gyn Oncologist or the Medical Oncologist.

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@tamcbart

I am not sure what NCCN (yes, I'm new to all this) but I'm sure I can locate something with a little research. I have located a GCT support group on facebook. The ladies are amazing and have provided me with information not found online or supplied by my Ob/Gyn Oncologist or the Medical Oncologist.

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National Comprehensive Cancer Network NCCN
I believe that GCT falls under LCOC, less common ovarian cancer, as does my subtype. They are managed differently than the most common epithelial OC, high grade serous.

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@odette

National Comprehensive Cancer Network NCCN
I believe that GCT falls under LCOC, less common ovarian cancer, as does my subtype. They are managed differently than the most common epithelial OC, high grade serous.

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Thank you!

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