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.

I am surprised and cheerful of the kindness you are all showing me by taking your time to read and reply to me! 🙂 thank you so much!

- Ever since my first diagnosis of cancer my entire life changed from the way I think to the way I eat and even to whom I talk to. At first I didn’t know what to expect with my new life after cancer. When I woke up from surgery I was already on menopause ( 30 yrs old ) and it was so unreal, I went home and immediately the anesthesia was wearing off I felt the hot flashes, I looked like myself but I wasn’t . My body began to change a few months later… I gained 25lbs and my hair grew and still is I have long, beautiful, dark hair. I looked thick almost chubby and that’s when the comments of the need to
“ eat healthy “ came from. It was hard to understand why I was gaining weight quickly if I wasn’t in love, going on dinner dates, eating crazy outside of home! But then I learned that after the removal of my organs my body was also trying to adjust itself and is still working harder to live without my hormones.
- Now almost 2 years later from surgery, my body is still going through changes I already lost the 25lbs I had gained and I look thinner than what I was before cancer! Except that now my health is threatening my life because I’m starting to have pain again like in the past and my health team is under suspicion that there is a
“ potential recurrence “ at bay.

- I have not met anyone worth falling in love with and it seems like I’m the only one still single in the family with no husband ! I don’t party, drink, or do drugs. I take care of my family I don’t ask for help I’m usually the help to them. When a mental crisis hits my sisters I’m the one they call for advice or spiritual insight. ( I’m the youngest! ) Even my mother when she wants to have a good time she thinks of me and asks me “ let’s go out tonight?” My brothers say I’m a wild spirit with a pure heart and the mentality of a child!! ( easily fooled) ugh!! Why can’t they see I am normal like them? I’m having a mental crisis, who can I call to be heard? I don’t have friends, my friends are my sisters & my mother! I need them but I know they need me more! The counselor never vents to the
“ client” in my case my sisters!

- this is what I think. If I do have a cancer recurrence then I’m warned already that chemotherapy is going to be part of my new treatment. That means I have to deal with the fact that I will lose my hair that I love so much! I have no idea if chemo hurts or if it will cure me! I’m losing weight without trying so I’m curious to see how much more ill lose during treatment! Oh and the pain I’m having right now without a diagnosis yet. My PET scan appointment is coming up and I’m really nervous!!!

I’m nervous because if I’m sick my family is going to be heart broken and there will be absolutely nothing I can do while I’m trying to recover for myself. I will not comfort them, I will not try to convince them that I am okay. And if they try to be strong for me then praise the Lord!!! But my mother….. SHE BREAKS MY HEART! For her I’ll be strong as long as I live!!

- I need to fill myself with understanding the most I can to know what to expect.
Hair loss ✔️
Weight loss ✔️
Pain during treatment ❓
If so how bad ???
Faith ✔️
Self care ❓
Strength ❓
Hope ✔️
When hair falls does it hurt ❓
Oral health ❓
What am I missing?? Thank you all for the advice and kind words to a stranger ! I’m glad I found this page because just seeing how fast and willing you all are to help me understand or to be encouraged to keep seeking until I’m heard it really refreshes me!! I see a little bit of me in you! I believe everything is going to be okay! I’m not alone!

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@naturegirl5

@dovebeloved I can feel your angst and fear through your words.

As @colleenyoung noted I experienced a recurrence. That was in 2021, two years after I was diagnosed with endometroid adenocarcinoma, FIGO Grade 1. In 2019 I had surgery - radical hysterectomy with removal of uterus, fallopian tubes, ovaries, and cervix. After surgery the pathology report indicated Stage 1a and so my gyn-oncologist told me that no other treatment was recommended. And yet two years later during a routine cancer surveillance appointment a little polyp-like growth was found on my vaginal cuff, it was removed and sent to pathology. Recurrence. Prior to the recurrence I had no symptoms and so when I got the phone call after the pathology report came out I was stunned and shocked. I could barely walk, think, or talk. I was scheduled for a PET/MR scan, and I was beside myself with fear, sleepless nights, and anxiety. I was 69-years-old at the time so much older than you are now. I could just hear people saying (they never did), "you've had a good life" as if I was going to pass away soon. It was just awful. Once I knew what I was dealing with (the PET/MR showed no evidence of disease so no metastasis) I saw a radiation oncologist and I was set up for external and internal radiation therapy. It was when I knew how this recurrence would be treated that I started to settle down and feel less fearful.

Here is what I've learned. Sadness, fear, crying, going back to the computer over and over again trying to find answers to questions I could not even articulate were all part of the process. No one wants to feel these emotions. We want certainty in our futures and with cancer and the fear of recurrence there is no certainty.

I learned about Hope. Hope is optimism with a plan. Optimism alone is just a thought. A plan has goals and it is action-oriented. So that is why, I figured, I felt less fearful once I saw the radiation oncologist. There was a plan in place that I would follow. So I could be optimistic and schedule the radiation appointments.

I'd like to share this. Please consider being compassionate with yourself. This is a very difficult time for you. I've learned that emotional support is key to going through this. Do you have family who support you? A partner? Close friends? I found solace in reading material from my religious tradition. Do you have a religious and spiritual tradition?

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

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@dovebeloved

Thank you for sharing your experience and taking the time to reply! I do have a support team it’s my mother and brothers & sisters. My brother says it’s something I eat that’s getting me sick so that I need to eat healthier. One of my sisters said maybe God wants to give me a great testimony & share hope & encouragement to others. Another sister said that it’s a wake up call and that I should take myself more serious and take care of my health. My mother buys me expensive, random supplements that “ cure “ cancer naturally! They all mean well. It’s hard to please them and agree to their opinion or their suggestions of how to live my life. And when my mother calls me to ask me if I’m drinking the stuff she gives me and I say No, she gets angry and stressed out because she wants to cure me but I don’t cooperate.
I am a believer of Jesus Christ, and I pray and read daily to get wisdom and courage to phase this difficult season . I have a heavy burden to be strong for my family so they don’t fear or that I don’t become a burden to them. When all I really want is to be in peace through this storm and trust the process one day at a time. That’s why I’m here searching for different perspectives from real cancer warriors. I love my family but right now I don’t want to be told what I should or shouldn’t be doing, I just want to understand what I’m going through and be mentally ready for the results.

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You will be in my prayers. I’ll pray for complete healing and peace during this difficult time in your journey.
You sound like an amazing human being. 💗

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@dovebeloved

Thank you for sharing your experience and taking the time to reply! I do have a support team it’s my mother and brothers & sisters. My brother says it’s something I eat that’s getting me sick so that I need to eat healthier. One of my sisters said maybe God wants to give me a great testimony & share hope & encouragement to others. Another sister said that it’s a wake up call and that I should take myself more serious and take care of my health. My mother buys me expensive, random supplements that “ cure “ cancer naturally! They all mean well. It’s hard to please them and agree to their opinion or their suggestions of how to live my life. And when my mother calls me to ask me if I’m drinking the stuff she gives me and I say No, she gets angry and stressed out because she wants to cure me but I don’t cooperate.
I am a believer of Jesus Christ, and I pray and read daily to get wisdom and courage to phase this difficult season . I have a heavy burden to be strong for my family so they don’t fear or that I don’t become a burden to them. When all I really want is to be in peace through this storm and trust the process one day at a time. That’s why I’m here searching for different perspectives from real cancer warriors. I love my family but right now I don’t want to be told what I should or shouldn’t be doing, I just want to understand what I’m going through and be mentally ready for the results.

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I have had similar issues with some of my family members not knowing what to say or saying the wrong things. The best advice I have received comes from my oncology team when I started treatment (8 months of chemo and radiation), "One day at a time. Don't think about all that is to come, you will be overwhelmed. Just take it one day at a time." I have found that to be so true, whenever I start to feel stressed or depressed, I remind myself...one day at a time.
The other advice that has helped is from a therapist, it's ok to feel the feelings just don't live there. So I allow myself some grace on the days it hits me the hardest, and then pull myself together and try to refocus on something positive.
I have asked myself so many times--why me? But there's really no answer for it. Maybe I should be asking why not me? There are so many stories of people getting cancer so much younger than I am. I'm thankful for good medical care and hopeful to moving on with life after.

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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.

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@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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@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.

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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
@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?

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@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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