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

Colleen,

I had debulking surgery in April and have just completed my eighth cycle of Carbo/Taxol (every three weeks). I am tolerating chemotherapy well - with some neuropathy and decreasing platelets which has meant a lowering of the dosage. There has not been too much tumor shrinkage, however the plan is to keep going for a few more cycles.

Victoria

@purpleagct, welcome. What treatment(s) did you have for adult granulosa cell tumor? How are you doing now?

I am not sure why this post from September popped up in my feed this morning. I am newly diagnosed with adult granulosa cell tumor and I have found amazing information in the Facebook group GCT Survivor Sisters! If you have not connected with this group yet, I encourage you to do so.

In the past two months you may have found more answers. Hoping you are doing well.

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

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.

@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?

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.

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

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?

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).