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Tamoxifen, Letrazole & others but seem a bit confused by the speed at which it returned....determined not to listen to outdated statistics & to get on with life!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 Linda, I had a test done on the day of the surgery, and my Inhibin was 1986, I have just heard! I tried to have bloods done as my consultant suggested, after surgery, to see how they were doing, but it seems the lab rejected them as they were taken too soon, so off to have some done on Monday, but they can take weeks to come back. Will let you know, on the plus side, my cholesterol,has come down! 

Good news (I think!) is that I have been referred to a London hospital as my consultant here seems to have runout of ideas. The surgery has cleared what was there, but he says he is under no illusion that he won't have been 100% successful. Bit scared that feelijgngreat firstly due to extra oestrogen from the tumours then because the surgery was laparoscopical, I am now in for some nasties if he prescribes chemo, but maybe it will be Letrazole or Tamoxifen, but have no idea. It's also been OK as Inlive close to the hospital here, but the idea of trogging to London and back when I am under treatment isn't so attractive! 

Anyway, I have to wait for an appointment, but will keep you posted about what he suggests. 

I am finding thst walking helps a lot, both mentally and with getting my fitness back, though I am no gym bunny! 

Hope the labs go well, let me know, and great that you have the grandsons and May break to look forward to! I had to cancel a trip to the States in Feb for surgery so hope to get clearance to go away soon, once at have a treatment plan in place. 

Please do keep in touch! 

Done! Thanks for notifying!