Hi Bridie,

Sorry I didn't reply to you sooner.  I haven't been on here for some months, guess I'm trying to move on a bit!

I had a granulosa cell tumour last year on my left ovary.  I don't know what you already know, so I apologise if I'm repeating anything.

The first thing that struck me as odd is how little is known about this kind of tumour.  My consultant didn't even know mine was this type until they had removed it!!!  My tumour was found purely by accident.  They were doing an ultrasound in preperation for me and my husband being referred for fertility treatment, and that's when they found it.  They did the usual CA125 test in March 2010, which came back negative.  They then couldn't decide what I had and whether it wassolid or a cyst.  The fertility hospital advised for it to be removed if it wassolid (which an MRI showed it was) and I had my op in August last year.  Then you could have knocked us and our consultant down with a feather!!! We got a call to go and see my consultant and he told me that it was a granulosa cell tumour.  I immediately had the correct blood tests (Inhibin A and Inhibin B) and had regular blood tests and a couple of CT scans over the next few months to make sure it hadn't spread. They didn't perform a hysterectomy on me as we were trying to get pregnant.  I was effectively discharged from their care in February this year and we proceeded with IVF in May, and I'm astounded to say that I am 14 weeks pregnant after our first attempt!!!!!!!

This is what I know about the tumour, and why I wasn't tested:

- It normally is found in pre-pubescent girls (benign) or in post-menopausal women (malignant) - I was 34 so they wouldn't have tested me.  Mine was the oestrogen producing kind, but my levels were ok, which indicates they caught it really early on.

- They will not routinely test for this type of tumour, as the blood tests are very expensive and authority has to be given to spend the money!!!!

- Less than 5% of women who suffer from ovarian cancer will have this type of cancer.

- Chemo and radiotherapy don't usually have an effect, so total removal and preferrably a hysterectomy is recommended.

To be honest, even my consultant had to trawl the internet to find some info to give us!!!!!!  Now I'm pregnant, I've asked to be seen by my consultant again, as having IVF and/or getting pregnant increases the chance of my caner returning (due to the hormones) so I'm due to see my consultant on the 19th. I guess it will be regular blood tests and maybe a couple of extra ultrasounds for me, which I'm happy with.

When I was diagnosed, I came on here and got no reponse on my thread, hence why I thought I would send you a message now.  It seems to be a little heard of tumour that no-one really knows about.  I know they told me that mine wasn't aggressive and it was only borderline cancerous, so I guess they caught it early.....I'm certainly grateful we were struggling to get pregnant because I had no symptoms at all!!!! The only thing I can attribute to the cancer is that my periods were very irregular and once I had my operation my cycle went to 28 days every month!!!!

I'd love to hear your story, one of the main reasons I don't come on here anymore is that I wanted to chat with people who had had this type of cancer to try to find out other people's experiences, but no-one else seems to have had it!!!!  I also felt like a bit of a fraud trying to support others who were suffering with cancer when I had had a reprieve and hadn't really suffered at all.

I'm here if you need to chat

Yorkie1xxxx

Reading these posts, I don't feel as alone in this battle.  My doc didn't seem to think Inhibin B was a big factor, but we found out this year, that it sure is!  I have been at a steady 7 and then boom, went to 9, then to 23, then to 35 and by the time of surgery it was 45, which 16 is the normal number.  They went in and found 7 more tumors.  I had 4 last year and apparently chemo did not work, so there is no plan as of yet on what to do.  I am trying to find foods that have no estrogen, because GCT feeds on estrogen.  I had a complete hysterectomy, so food must be the only way I am getting it.  Looking for new diet plan to slow this stuff down!    Any ideas are great appreciated!

Glad you are on active treatment to control this pest! If you are on FB just enter in the search box UK GCT Survivor Sisters! and request to join. I will message you back for some info and then admit you to the group. Cheers! 

Okay, I did the request, however I am not in the UK, I am in Murray, Utah, I sure hope that doesn't matter, it has been so hard to find folks how have support groups here!

Hi LindaSmurf, 

i too have GCT, first diagnosed last Feb, when I was told a full hysterectomy had sorted it, that I merely needed regular blood tests to check for unlikely recurrences. Sadly, though my June tests were great, those in September suggested it was back, and scans in Jan confirmed it. They operated to remove more tumours than they originally saw in the scan, tho all in the pelvic area. I am now just waiting to see what new treatment plan they might suggest, as the surgery isn't holding it at bay as they'd hoped. I am keen for them to sort this asap as I am eager to go on holiday, and intend to continue to live my life with the irritating odd recurrence, rather than letting this thing define me. They are looking at Tamoxifen, Letrazole & others but seem a bit confused by the speed at which it returned....determined not to listen to outdated statistics & to get on with life! 

I hope you are finding the Tamoxifen tolerable? I have beeen taking ground flax and the active ingredient in Turmeric, Curcumin, in the hope that it helps.....

Hi Madmarilyn! So sorry you are going through this! The Tamoxifen has been great, just a few hot flashes and a little depression, but that could be caused by retiring and being worried about my inhibins. Both Inhibin A and B doubled from Jan to Feb. I go in next week for labs so we will see what they show. I am also taking Turmeric and added Milk Thistle which is supposed to help the liver. Cut out sugars and carbs and eating more cancer fighting foods. I have heard of the Letrazole and several others as well. There is a closed Facebook page called GCT Survivor Sisters. There are about 700 members in the world on it, India, Germany, and I can not believe they are all going through this at various stages. You can join and I think you would be amazed. They all answer questions about their course, meds, etc. Some are going through their 6th or 7th surgery now. I told my doc last week that if it's back after only 5 months, it can wait til I take my vacation to see my grandsons in May! This will no longer define me as well, don't have time to waste! Actually went to London in January, two months after surgery because I just didn't want to waste the opportunity! How are your inhibins looking now?

Hi [@madmarilyn]‍  and [@LindaSmurf]‍ 

I thought I would just let you know that a new lady posted her granulosa cell tumour story here. If you have a chance, don't hesitate to drop her a line on her thread. She had a hysterectomy recently and is looking to connect with others with experience of ovarian granulosa cell tumour.

Best wishes,

Lucie, Cancer Chat Moderator

Hi [@madmarilyn]‍  and [@LindaSmurf]‍ 

I thought I would just let you know that a new lady posted her granulosa cell tumour story here. If you have a chance, don't hesitate to drop her a line on her thread. She had a hysterectomy recently and is looking to connect with others with experience of ovarian granulosa cell tumour.

Best wishes,

Lucie, Cancer Chat Moderator

Done! Thanks for notifying!