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?

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

Religion is difficult. It's so personal. Every single Christian has a different belief than the person sitting in the pew next to her. That's what makes consoling others hard.

I'm unchurched and have been for years. I don't think in black and white and so many people do. I also don't like worshipping with the person I just sat in Bible class with who went on and on about people on welfare or spoke the disgust towards people who are different than the narm. I remind myself they are just flawed humans like me, but they are not even trying to love their neighbors.

I know what's said in our Bible and I know it's often vague and open for interpretation. But I still believe in a higher power and Jesus is the one I believe in.

In our faith he knows all. Every thought I have is a conversation with God. As much as I would like to be in a congregation that believes like me it can never really happen because our personalities, life experiences are so different. I just want to be with people who strive to love unconditionally.
Denise

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@denisestlouie

Its just 4 months since I was told I had cancer. I am having a difficult time processing all this. My chemotherapy will ends Dec 9 but the uncertainty will not. I'm adding more treatment. I want it all. I really don't want to decline because of cancer.
I am religious, but my prayers are guarded. I don't want to treat God l like a magic genie who will grant my wish. It's been my experience he has seldom granted me my wish in the past. I've had to just figure out how to move on. I don't understand the Job story. I know it was to show how Job had unwavering love for God, but dang did God really have to make him go through all that? The is so mean. Same thing with Jesus. He asked to be let out of his suffering, but nope that's not what happened. See what I mean. For this earth God's not very helpful and it doesn't matter how strong our faith is either.

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I'm not a believer, and reading your post makes me wonder if that just gives me one less thing to worry about.

I find it fairly easy to accept that cancer is a natural thing that strikes people somewhat randomly. Treatment may go well; it may not. All you can do is to try to get the best treatment for yourself that you can within the system that we have. Contemplating a God with the power to help, but who for whatever reason withholds it, seems unnecessarily upsetting.

And try to enjoy yourself, whether or not the cancer thing goes well. I'm on a clinical trial of a new drug, which has definitely had its ups and downs. (Tumors have shrunk but are still there, and sometimes the drug causes side effects.) But I just went to Italy for my 60th birthday. Had a great time.

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@denisestlouie

Its just 4 months since I was told I had cancer. I am having a difficult time processing all this. My chemotherapy will ends Dec 9 but the uncertainty will not. I'm adding more treatment. I want it all. I really don't want to decline because of cancer.
I am religious, but my prayers are guarded. I don't want to treat God l like a magic genie who will grant my wish. It's been my experience he has seldom granted me my wish in the past. I've had to just figure out how to move on. I don't understand the Job story. I know it was to show how Job had unwavering love for God, but dang did God really have to make him go through all that? The is so mean. Same thing with Jesus. He asked to be let out of his suffering, but nope that's not what happened. See what I mean. For this earth God's not very helpful and it doesn't matter how strong our faith is either.

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@denisestlouie I have struggled with some of the same questions that you have. Am I ready to leave this Earth? No, I'm not. Would I pursue the recommended treatments and beyond? Yes, I would too ultimately trying to get to the point where I confront of the ambiguity of not knowing.

These are religious and existential questions that different religions and faiths approach in a variety of ways. Here is something by Jack Kornfield who writes from a Buddhist perspective:

The Wisdom of Not Knowing:

-- https://jackkornfield.com/the-wisdom-of-not-knowing/

Do you have a pastor you can discuss these questions with? Or perhaps recommend podcasts or readings for you?

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@angierivas1

So beautiful written and inspirational! Thank you Helen for sharing your thoughts and your journey with us. 💗

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Its just 4 months since I was told I had cancer. I am having a difficult time processing all this. My chemotherapy will ends Dec 9 but the uncertainty will not. I'm adding more treatment. I want it all. I really don't want to decline because of cancer.
I am religious, but my prayers are guarded. I don't want to treat God l like a magic genie who will grant my wish. It's been my experience he has seldom granted me my wish in the past. I've had to just figure out how to move on. I don't understand the Job story. I know it was to show how Job had unwavering love for God, but dang did God really have to make him go through all that? The is so mean. Same thing with Jesus. He asked to be let out of his suffering, but nope that's not what happened. See what I mean. For this earth God's not very helpful and it doesn't matter how strong our faith is either.

REPLY
@cpl

Hy, hope you doing better. I had my surgery 10/2021. for first time ,this days I have cramp like pain and sow dark yellow/brownish vaginal discharge. I don't know what is going on, but I am also scared that it could be that GCT is back. I will call my gin tomorrow.

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@cpl I’m wondering if you saw your gynecologist as planned about your symptoms. Do you have news you would like to share?

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@reenajosep

adult granulosa cell tumor. Abdominal and pelvic relapse confirmed.
I have body discomforts and feverish feeling, nothing severe, now having bit constipation, no abdominal pain

I missed a scanning between Oct 2023 and July 24. 3 months back visited surgeon for check up, said everything fine. Suggested pet scan to be free for next one year.
My initial treatment over in june 2021. No medications.initially my stage was III 2b. First surgery was unplanned hysterectomy. After that did Chemo,again laprotomy for CRS and hipec did. Later in March 2022 two small lesions reported in pelvic area and in Oct 2022, 2 lesions reported near liver, did biopsy but result was negative. Was under follow-up with CA 125 and ultra sound., till Oct 23 no changes noted. In April 2024 little hike in CA 125 noted (17.8)., was below 10 after treatment.
I used to go gym for the last 2 years, but intensive training started in feb24. Later I reduced 7 kg . I was 77 kg in Feb, now 70 kg. No abdominal pain while doing exercise. I used to feel very fresh and active after gym workout. Not felt unusual tiredness, now also I am physically active and fine.
CBC, blood sugar, TSH, liver function test, urea creatinine- everything normal.
Inhibin B shows elevated >1000.8, tested for the first time now.

My first issue was in 2012 with a cyst in left ovary, which was removed by laproscopy immediately

Doctors did CRS only. As it took more than 14 hours. removed all tumors and could do it perfectly.
Colon anastomosis near rectum has been done as they find one tumor nearer to that.
Now biopsy result. Recurrence confirmed. Suggested chemo 4 or 6 cycles based on inhibin B value after one month. Said to start on 21st day. cbc values shows variation.

Clinical Data : Known case of recurrent granulosa cell tumor
IHC Findings IMMUNOHISTOCHEMISTRY:
ER: Positive, 1+/2+ nuclear positivity in 30% tumor cells
PR: Positive, 2+/3+ nuclear positivity in 90% tumor cells
Ki­67: 10­15% activity.
Controls satisfactory.
Antibodies clones:
ER(Sp1 ROCHE), PR(IE2 ROCHE), Her2 Neu(4B5 ROCHE), (MIB­1
Pathnsitu).

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Welcome, @reenajosep. I moved your post to this existing discussion:
- Granulosa cell (GCT) ovarian cancer: Suspect recurrence, how to cope?
https://connect.mayoclinic.org/discussion/gct-cancer-slow-recurrence-suspicions/
I did this so you click the link to read previous posts and connect with other members living with granulos cell tumors, like @dovebeloved @cpl @imr @sophiaphilia and others.

Reena, have you started chemo yet? How are you doing?

REPLY

adult granulosa cell tumor. Abdominal and pelvic relapse confirmed.
I have body discomforts and feverish feeling, nothing severe, now having bit constipation, no abdominal pain

I missed a scanning between Oct 2023 and July 24. 3 months back visited surgeon for check up, said everything fine. Suggested pet scan to be free for next one year.
My initial treatment over in june 2021. No medications.initially my stage was III 2b. First surgery was unplanned hysterectomy. After that did Chemo,again laprotomy for CRS and hipec did. Later in March 2022 two small lesions reported in pelvic area and in Oct 2022, 2 lesions reported near liver, did biopsy but result was negative. Was under follow-up with CA 125 and ultra sound., till Oct 23 no changes noted. In April 2024 little hike in CA 125 noted (17.8)., was below 10 after treatment.
I used to go gym for the last 2 years, but intensive training started in feb24. Later I reduced 7 kg . I was 77 kg in Feb, now 70 kg. No abdominal pain while doing exercise. I used to feel very fresh and active after gym workout. Not felt unusual tiredness, now also I am physically active and fine.
CBC, blood sugar, TSH, liver function test, urea creatinine- everything normal.
Inhibin B shows elevated >1000.8, tested for the first time now.

My first issue was in 2012 with a cyst in left ovary, which was removed by laproscopy immediately

Doctors did CRS only. As it took more than 14 hours. removed all tumors and could do it perfectly.
Colon anastomosis near rectum has been done as they find one tumor nearer to that.
Now biopsy result. Recurrence confirmed. Suggested chemo 4 or 6 cycles based on inhibin B value after one month. Said to start on 21st day. cbc values shows variation.

Clinical Data : Known case of recurrent granulosa cell tumor
IHC Findings IMMUNOHISTOCHEMISTRY:
ER: Positive, 1+/2+ nuclear positivity in 30% tumor cells
PR: Positive, 2+/3+ nuclear positivity in 90% tumor cells
Ki­67: 10­15% activity.
Controls satisfactory.
Antibodies clones:
ER(Sp1 ROCHE), PR(IE2 ROCHE), Her2 Neu(4B5 ROCHE), (MIB­1
Pathnsitu).

REPLY
@cpl

Hy, hope you doing better. I had my surgery 10/2021. for first time ,this days I have cramp like pain and sow dark yellow/brownish vaginal discharge. I don't know what is going on, but I am also scared that it could be that GCT is back. I will call my gin tomorrow.

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Hello,
Have you had any tumor markers come back elevated as well? If so what kind? And the brown discharge could it be dry blood? It does sound scary and concerning.. when you had your surgery did they remove your uterus and cervix?
I’m still cramping and I had a pet scan this past Thursday along with blood work. I had access to my blood work but. It the pet scan so I’m just waiting for Monday to come so I can call my doctor.
Inhibin B came at 67.4 and LDH at 145. I don’t know how to interpret my results so I need to wait oh and my CA125 came in at 6.9, I know that one is normal but I do t know about the others .
Let me know what they tell you.

REPLY
@cpl

Hy, hope you doing better. I had my surgery 10/2021. for first time ,this days I have cramp like pain and sow dark yellow/brownish vaginal discharge. I don't know what is going on, but I am also scared that it could be that GCT is back. I will call my gin tomorrow.

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@cpl It's good that you plan to call your gynecologist tomorrow. Cramping pain and the dark discharge sounds concerning to me. I'd be doing the same as you and trying to see my gynecologist as soon as possible. In fact, this is one of the questions that my nurse practitioner asks me during each of my active surveillance appointments. Any new pains or cramps? Any vaginal discharge?

Will you please come back here and let me know what you find out?

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@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!

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Hy, hope you doing better. I had my surgery 10/2021. for first time ,this days I have cramp like pain and sow dark yellow/brownish vaginal discharge. I don't know what is going on, but I am also scared that it could be that GCT is back. I will call my gin tomorrow.

REPLY
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