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

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!

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?

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.

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…

@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?

I am truly sorry that you are in this situation. At the clinic that treated my family member’s reoccurrence there is an expression “where you go first matters.” A number of folks who post on this site had also not received the best advice or treatment from their local oncologist the first time around. I have come to conclude that if you can manage it, go to an expert at one of a number of excellent cancer hospitals across the country. It does make a difference. If you feel that you are not being heard, or something you are told feels strange or implausible, get a second opinion. Just my humble opinion….

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.

Thank you for the encouragement! I am learning to stand up for myself and not let my fate be in the hands of someone who shows up to work but leaves their heart at home.

It never hurts to take better care of ourselves. I would be wary of any supplements that promise to cure cancer. Say what you will to your mother but these supplements can actually work against any treatment regime that your doctor recommends. Do not conclude that cancer has anything to do with what you are or have been doing. We do not know its cause or why it is something that we have to cope with. Instead, focus on the future and how you are going to be healthy again. All the best.

@dovebeloved Oh, dear. I had so hoped that the family surrounding you would be listening to you instead of giving you advice that isn't particularly helpful. I'm going to share some things that I have learned.

We often want to know what caused the cancer we are experiencing. In fact, some people asked me this. For me, I had risk factors (according to research) of never having children and going through menopause later in life. That's all I could find out. So, it was nothing I did or didn't do (other than make the decision not to have children).

Eating healthy is a great plan. For everyone. Would you like to do this? This is especially the case for those of us who are cancer survivors, experiencing cancer for the first time and especially while undergoing treatment. Is there a nutritionist with expertise in cancer that you can consult with? Perhaps your oncologist can make a referral?

Reading and praying every day is a source of support. Do others at your religious organization know about the cancer? If yes, is there a prayer circle for you?

You are going through a very difficult time and carrying the burden of your family will only weigh you down even more. The image of carrying a backpack full of rocks comes to my mind. Imagine that you are carrying that backpack and every one of those large rocks is a family member. Please pray to have those rocks lifted from your backpack and placed back where the rocks belong. On the ground. In order for that to happen I suggest to pray for the courage to tell your family what you do and do not need from them. "I know you love me and you want me to survive this terrible cancer. I want that to. Telling me what you think I should and should not be doing isn't helping. It makes me feel worse. I know you mean well. I really do. Please listen to me when I share what helps me the most. Please say healing prayers for me. That will help me".

The best support we can offer one another is to sit quietly next to one another and listen. Just listen.