Diagnosed with granulosa cell (GCT) ovarian cancer

Thank you, Colleen. I meet with my Ob/Gyn Oncologist on Thursday and have a list of questions for her. I also found a support group on FaceBook and they have helped shed some light on GCT the options available and shared their stories. I still have a hard decision to make, but with surgery barely a month ago I am leaning to the monitoring option - CT scan, blood work and pelvic exam every three months. My body hasn't healed from surgery, and I honestly don't think I am mentally or physically ready for chemo yet.

As I was diagnosed with a different, rare early stage OC subtype, I can’t make any recommendation regarding follow up treatment. I, too, was given different opinions from two NCCN cancer centers. Ultimately, my treatment was modified and in less than two years following my diagnosis, the NCCN had changed their recommendations. I would advise looking at the NCCN guidelines for your specific histology. Also, finding a group of women with GCT may give you valuable support. I have become close friends with women I met online with the same diagnosis as myself. Great progress is being made in OC research. I am beyond five years.

Welcome Tammy @tamcbart. Making treatment decisions are so hard! Fellow ovarian cancer thrivers @starko @susu2 @odette may be able to share their experiences.

In addition to lower the risk of recurrence, there are other criteria to consider about whether to have chemo or not with stage 1 ovarian cancer. Your oncologist can speak to both the population statistics and to your individual factors, including your age, health status, other medical conditions, and your personal goals and preferences.

You ask a good question about how long it takes for tumor markers to decrease after surgery. I'm not sure if the indicators change immediately or not. That's a good question for your team too. I'd love to hear the answer.

Hi,
I recently had a large granulosa cell tumor removed and now I find myself at the crossroads of monitoring or chemo. The tumor was smooth with no ruptures and the doctor doesn't think there are any live active cancer cells but has suggested chemo as a "mop up" and to lower the tumor marker.

As much as I want to just be done with this and move on, I have to think about the possibility of it returning. I have a couple of weeks before I am released from my Ob/Gyn Oncologists, so I will need to make a decision soon. What are your experiences, opinions or suggestions?

From what I have read chemo is not done for a Stage 1C tumor. The tumor marker was still elevated 2 days after surgery. Any idea how long it takes before the tumor marker decreases when removing a large mass?

Thanks,
Tammy

@cpl How are you doing? Did you get that third opinion?

thank you!

I did, but they did not gave me yet any appointment. The first available is in February and they don't seem like they care much.I am waiting for their response still....

@cpl, should you wish to consider a second opinion at Mayo Clinic, here is the information to request an appointment or get your physician to make a referral: http://mayocl.in/1mtmR63

Hi @cpl, Sloane Hospital for Women in NYC and affiliated with Columbia's Medical Center? And Hackensack is also affiliated with a university medical center. How confusing (I say, again) to get such very different recommendations. Yes, of course every patient is different however if the GYN/ONC physicians you are talking to have experience in treating Adult-type granulosa cell tumor then I would think they could give you some additional information with statistics to help you to make a decision. I'd be really anxious in your place. I can feel my heart pounding because I really know that confusion. For me, I wanted my cancer treated as soon as possible and get that plan in place. Do I have that right? You are in a region where there are other options for another opinion. I'd also want another opinion. Sure, Mayo is a good option. Would you go to Jacksonville (FL) or Rochester? What does your local gynecologist say about this? Can they refer you to Mayo or another cancer center in your region?

Hi Helen, thank you for your suggestions and experience. I understand stage 1A does not need usually any treatment and that is good. FIGO Stage 1C is more like gray zone and it is stressful when doctors don't agree. They don't know much about Granulosa Cell cancer generally because is a very rare type. I was trying to think how maybe not taking chemo is better...but then, one oncologist told me how they had case 1C2 who had cancer back already in 6 month??! If I try to ask how I wanna see statistic of recurrence , I am getting answer how every patient is different and they cannot tell. BUT, I don't think we are all soooo different and I believe there has to be way to figure more about what we have in common so they can maybe give me more information, just if they do more effort. At the end of story, looks like I will have to do my research and take responsibility for decision. It is stressful. I was thinking to get Mayo Clinic opinion. I did get from Sloan Hospital-women cancer opinion, and is that they do not recommending chemo. New Jersey Hackensack cancer center does. They are both high ranked for cancer care.