1. < Gynecologic Cancers

Granulosa cell (GCT) ovarian cancer: Suspect recurrence, how to cope?

Posted by dovebeloved @dovebeloved, Sep 19 12:27am

I was diagnosed with stage 2 Granulosa Cell Tumor Cancer at age 30. I had my entire reproductive system removed. GCT cancer is a rare ovarian type of cancer. I didn’t need chemo after surgery because it was caught on time. Surgery was back in 2022. Now I’m getting the same pain I had before my cancer diagnosis two years ago. I feel like my period is about to come any day now but I know that is impossible because I have no ovaries, or uterus, or cervix. I’ve been getting monitored with blood work
( tumor markers ) . And all the blood work comes back normal except one marker called inhibin B. Inhibin B is a hormone produced by ovaries, which I don’t have and my oncologist is ordering me a PET scan which is coming up next week and at first I didn’t worry about her suspicions but now the pain is happening more often and I’m experiencing new symptoms as well and I don’t know how to feel. Sometimes I want to cry and sometimes I research ovarian cancer survival stories but I still don’t know how to feel.
My symptoms are strong cramps, my bladder hurts only when it’s full, my vagina canal gets random excruciating pain that feels like if it was getting twisted as if it was getting rinsed like a wet rag. I think I’m sad but I have hope, I’m concerned but in disbelief as well! Has anyone had ovarian cancer recurrence? If you have what where your symptoms? How did you cope or how are you coping?

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dovebeloved | @dovebeloved | Sep 19 5:18pm
In reply to @gisellef "Hi My family member had the same issues happening. In her case it was deemed a..." + (show)
@gisellef

Hi
My family member had the same issues happening. In her case it was deemed a reoccurrence but her opinion was that not all the cancer cells were caught the first time around. I have read that cancer cells can hide in scar tissue from the surgery, which cannot be reached with chemotherapy. Radiation can deal with rogue cells. I truly hope that you are not facing another bout of cancer. The PET scan will let you know.

Should that be the case, talk to your physician about adding radiation to your treatment protocol. I understand that no one really wants more in the way of cancer meds and treatments but my family member could have avoided Round 2 of cancer had a light round of precautionary radiation been added to her regimen the first time around. We had to learn that from the best cancer doctors in the world, who treated her the second time around. But, don’t despair! Many people have survived a reoccurrence with the right treatment protocols.
Best wishes to you!

Jump to this post

Thanks for replying. Believe me I tried convincing my oncologist for a small dose or 1 round of anything that kills cancerous cells to make sure any microscopic cells don’t have a chance! But I was denied because the medicine is reserved for advanced stages of cancer. I made myself look like a druggie who just wanted at least ( one small dose ) lol . Maybe I asked wrong or maybe I should have repeated her own words of advice the day we went over my options!
“ we can save your ovary by scraping the tumor as much as possible and cleaning up any visible cancerous tissue in the uterus but the chances of the cancer coming back are high because the cancer you have is hormonal so leaving the ovary increases the chance of returning. so I recommend removing all your surrounding organs to not risk any microscopic cells escaping! “ Sounds pretty assuring doesn’t it?? I sacrificed my organs and the opportunity of a large family so I can save my life and now here I am still fighting a fight that should have been won the first time. I’m not saying it’s the oncologist fault but what I am saying is that if I had to sacrifice a part of my life to save my future might as well be ones and for all. Why wait for the decease to grow or spread so I can be taken serious…

REPLY
dovebeloved | @dovebeloved | Sep 19 3:51pm
In reply to @colleenyoung "I add my welcome, @dovebeloved. I'm also tagging @cpl who has GCT ovarian cancer to join..." + (show)
@colleenyoung

I add my welcome, @dovebeloved. I'm also tagging @cpl who has GCT ovarian cancer to join this discussion as well as @naturegirl5 who knows about the fear of recurrence, as do many members here.

You mention that you don't know how to feel: sad, motivated to research, hopeful, concerned, in disbelief. I'm here to tell you that all those feelings are valid. It's not surprising that you're on a rollercoater of all of the above.

Have you talked with your cancer team about the returning symptoms yet?

Jump to this post

Hello, thank you very much! Yes I had a visit to my regular OBG doctor today & he took a look inside my vagina and he said he didn’t see nothing abnormal. I called my oncologist but unfortunately I have to wait for a call back. So as of right now I’m just being patient and hoping the pain doesn’t kick in.. there is nothing else I can do.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 19 2:59pm

I add my welcome, @dovebeloved. I'm also tagging @cpl who has GCT ovarian cancer to join this discussion as well as @naturegirl5 who knows about the fear of recurrence, as do many members here.

You mention that you don't know how to feel: sad, motivated to research, hopeful, concerned, in disbelief. I'm here to tell you that all those feelings are valid. It's not surprising that you're on a rollercoater of all of the above.

Have you talked with your cancer team about the returning symptoms yet?

REPLY
1 reply
gisellef | @gisellef | Sep 19 9:19am

Hi
My family member had the same issues happening. In her case it was deemed a reoccurrence but her opinion was that not all the cancer cells were caught the first time around. I have read that cancer cells can hide in scar tissue from the surgery, which cannot be reached with chemotherapy. Radiation can deal with rogue cells. I truly hope that you are not facing another bout of cancer. The PET scan will let you know.

Should that be the case, talk to your physician about adding radiation to your treatment protocol. I understand that no one really wants more in the way of cancer meds and treatments but my family member could have avoided Round 2 of cancer had a light round of precautionary radiation been added to her regimen the first time around. We had to learn that from the best cancer doctors in the world, who treated her the second time around. But, don’t despair! Many people have survived a reoccurrence with the right treatment protocols.
Best wishes to you!

REPLY
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