Granulosa cell cancer

[susan1]

Hi Guys joined the site but then was advised to look on the hysterectomy sites instead as at that stage had no diagnosis.Just seen the oncologist, two weeks post hysterectomy. He told me that I have Granulosa cell cancer but he was very positive and told me that he does not think that I will need any further treatment and that the hysterectomy was probably all that was needed. he also introduced me to the nurse specialist. I have to wait now until the 17th after the next MDT team meeting to see if I need anything else. Just wondering if anyone else had a similar diagnosis and what their experiences are.

[wendydee]

That sounds like good news, Susan! Sounds as if they got it all out before Anything had spread too far. i am not sure what granulosa cell is but mine was a similar outcome. I had borderline tumours in three sites (2 ovaries and the omentum) I had my op and then monitoring but no chemo or radiotherapy. Have a look on my profile for all the details, if you want more info. I have been well for 10 years. Hole you have many more years too. Have a good weekend and take it easy. It's a big op to get over!

All the best

Love Wendy xx

[Whippit]

Dear Susan

It looks as though you've had a lucky break if surgery has cleared up the problem and no further treatment needed. Hope all goes well after the next MDT meeting.

with best wishes. Annie x

[Hidden]

Just sending you a welcome and best wishes love x G x

[Dolcie]

Hi Sue, I also have Granulosa cell carcinoma. Does sound like they have got it in time, mine can only be surgically removed no treatment. Inbox me if u want to ask me anything else take care x

[susan1 in reply to Dolcie]

Hi Dolcie

Have you had your surgery yet ?

SueX

[charlie12]

Hi Sue

Welcome and glad you found us....it is good news that you don,t need any more treatment , but it does feel strange , at least it did to me.

The Inspire site in the States is very good and has more members , so if you are not in it already then have a look at it.

Take care and stay in touch

I hope you are getting over the operation.

Charlie xx

[susan1]

Thanks Charlie i will definitely look at the inspire site, any info is appreciated. Apparently it is one of the rarer cancers so bound to be more people in the states with knowledge of it. Am getting over the op, its just the psychological side that takes more time.xx

[Anne-2]

Hi Susan

I was diagnosed as having a GCT six weeks after surgery- I was not prepared for this news as I thought I was only going for a post surgery check up. It was a bit of a shock to know that I had had a malignant tumour and the surgeon was not very convincing in his ' Well, there's nothing else to do' attitude. I had to find out more myself and my g p sent me to the local gynae/oncologist. He was horrified to find out that I had not been given a CT scan and arranged one ( although he was certain it would be clear and it was!). However, he also arranged another one six months later- which was also fine- and now I can self refer if I feel anything is wrong.

There is a specific support group for GCT sufferers based in New Zealand- google GCT and it will come up.

Hope this is helpful to you

Love

Anne

[susan1]

Thank you Anne I will definitely look up the support group. That was awful for you having to wait for 6 weeks after, at least I was called me in after 2 weeks. It makes me hopeful to know that you have remained clear and hope for the same.

Love

Sue

[lemongrass]

Hi there,

I was diagnosed with GCT after a hysterectomy last August, it is quite rare and quite a lazy slow growing cancer, it can take up to 20 years to return.

I have read about a 95% chance of reaccurance but the New Zealand bods rate the % higher.

Reading American sites seems to be helpful, but what comes up time and time again is it's rarity and people being treated by doctors who have never encountered GCT before.

I feel lucky to be treated by a London teaching hospital, I will have three monthly blood tests and yearly scans for the next 5 years and then hopefully we will revaluate.

It has been an eventful year, cancer diagnois shocked me to the core, I felt my whole world had been turned upside down.

I have had counselling and that helped a great deal.

It is good to find fellow GCT's and I would like to keep in touch.

Best wishes

Marion xx

[lemongrass in reply to lemongrass]

OMG.. What I meant to write was there is a 5% chance of reaccurance!!

Hope I did't send you sprinting for the gin bottle!

Many apologies

Mxx

[susan1]

Hi Marion

Saw your second reply before I headed for the bottle!

Thank you for making contact, you are lucky to be treated by a big hospital, my consultant seems very confident that he has managed to clear the cancer which is great however i have looked on the NZ site and they seem so much more knowledgeable and realistic about the chances of it coming back. I asked him about follow up, he said three months initially then 6, no scans unless the blood tests are abnormal? I need to do more research so that I get the best treatment. I feel shocked by the diagnosis but don't feel that others understand, everyone keeps asking when I am going back to work, a month since the hysterectomy, don't feel like returning yet! Did you go back after your hysterectomy?

Suexx

[lemongrass in reply to susan1]

Hi,

You know, I think the most important thing is to keep calm. :o)

Remember you do not have cancer anymore, and you will be checked.

I felt no one really understood, everyone was kind but they didn't have a clue what I was going through.

I also found accepting the diagnosis very difficult.

I went back to work on a staged return at 10 weeks, it was good to go back, I was quite down at home and for me, work was something the cancer couldn't touch. I only told 2 people about the cancer and at that time, it was the only place that felt 'normal'.

I read somewhere that 11 weeks was the norm.

Counselling helped a great deal.

The best piece of advice I was given - .Be kind to yourself.

Mxx

[susan1]

Hi Marion

Thanks for the advice, you are right about keeping calm, I have just had a few days away and feel more calm and optimistic, starting to think about other things rather than the cancer. Have been off work now for 5 weeks and will aim to get back in another 6 or so. Hope to have some time off with my son who is 14 so may extend the sick leave with some holiday and then have a gradual return. Not used to time off from work, like you enjoy work and am not great at home by myself all day when I tend to worry more.

Its a funny thing this CGT as you say I no longer have cancer but its still hard to come to terms with the fact it may come back but as you say the odds are with us so that feels good.

Advice about being kind to yourself is so true and will do my best. Hope you are well.

Suexx

[lemongrass in reply to susan1]

Hi,

How is it going? The sunshine must be helping!

Getting away for a few days always helps. I also have a 14 year old son, I found keeping everything positive and normal for the kids very helpful for me.

I think a cancer diagnosis changes your life, not in a good way or a bad way, but in a 'make you reassess everything' way, rather like a mini Renaissance.

Don't rush back to work while the weather is nice, pamper yourself, eat cake in the garden. xx