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

Hi Yorkie1

I'm so glad I read what you had written. I'm myself had been diagnosed with R ovarian  GCT on May 9th - never forget this date! However, before on 21 Apr I had a total hysterectomy as the ultrasound and CT scan said it was a big cyst on my R ovary and the consultant wanted me to have a total hysterectomy. So from the diagnosis of cyst to the op was about 5 wks. I was lucky as the op was done in a private hospital (thanks to my husbands' company private insurance). So I was pleased that everything went OK and with the cyst in mind discharged after 6 days (had to stay longer as developed chest infection whilst in hosp). then after few days of discharge the consultant called (which she said she will) sayin that the histopatology testing came inconclusive and could we see her at the next available appt, i.e. next week. I immediatelly started to be very suspicious, weepy, frightful and extremely impatient. my sleepless nights began. on 9th May when we went to hear the conclusion of the MDT - all I remember it was R ovarian granulosa cell tumour, well differentiated, type 1c. there was no need for chemo-, radio- or HRT - due to previous DVT. now the real trouble started for me. I think I could not fully grasp what was said to me at the time of appointment and via the interpretation of my husband, I'm affraid it only deepened my fear and extreme reaction to sleep deprivation and constant agitation. suicidal ideation, plans and writing a farewell letter. I became obsessed about the diagnosis to such an extent that I needed specialist - psychiatrist support. I'm now on Mirtazapine, Zopiclone and Diazepam. However, Diazepam helps to release the neck muscle tension and agitation during the day, otherwise, I'm still sleeping the most 3-4hrs per night. trying to doze off during the day, but my household wakes me up and wanting me to sleep during the night rather than day. they're all very helpful, however confused. I'm unable to explain fully what's happening to me. I'm falling into dark tunnels when my mood deeps and I feel as I want to end it all. I believe I have a phobia of dying. people say to me that my prognosis are good, but I can't see it that way. you're right to say that this is a very rare form of Ca and little is known about it. when I went to see the oncologist who suppose to follow me up every 3-monthly, he even diddn't know why I was seeing him. he was unprepared! that even further swang my mood and I'm on a roller coaster ever since. so, in summary, nothing so far helped me. OK, I may be Ca free, but the fear of dying and having one to return remains ever since. wish either I had the strength to end it all and soon, or to have further strength and understanding to carry on normal life as I had before the hysterectomy.

sorry to be so pesimistic. hope you're OK?

BW

rak

Hi Yorkie1

I'm so glad I read what you had written. I'm myself had been diagnosed with R ovarian  GCT on May 9th - never forget this date! However, before on 21 Apr I had a total hysterectomy as the ultrasound and CT scan said it was a big cyst on my R ovary and the consultant wanted me to have a total hysterectomy. So from the diagnosis of cyst to the op was about 5 wks. I was lucky as the op was done in a private hospital (thanks to my husbands' company private insurance). So I was pleased that everything went OK and with the cyst in mind discharged after 6 days (had to stay longer as developed chest infection whilst in hosp). then after few days of discharge the consultant called (which she said she will) sayin that the histopatology testing came inconclusive and could we see her at the next available appt, i.e. next week. I immediatelly started to be very suspicious, weepy, frightful and extremely impatient. my sleepless nights began. on 9th May when we went to hear the conclusion of the MDT - all I remember it was R ovarian granulosa cell tumour, well differentiated, type 1c. there was no need for chemo-, radio- or HRT - due to previous DVT. now the real trouble started for me. I think I could not fully grasp what was said to me at the time of appointment and via the interpretation of my husband, I'm affraid it only deepened my fear and extreme reaction to sleep deprivation and constant agitation. suicidal ideation, plans and writing a farewell letter. I became obsessed about the diagnosis to such an extent that I needed specialist - psychiatrist support. I'm now on Mirtazapine, Zopiclone and Diazepam. However, Diazepam helps to release the neck muscle tension and agitation during the day, otherwise, I'm still sleeping the most 3-4hrs per night. trying to doze off during the day, but my household wakes me up and wanting me to sleep during the night rather than day. they're all very helpful, however confused. I'm unable to explain fully what's happening to me. I'm falling into dark tunnels when my mood deeps and I feel as I want to end it all. I believe I have a phobia of dying. people say to me that my prognosis are good, but I can't see it that way. you're right to say that this is a very rare form of Ca and little is known about it. when I went to see the oncologist who suppose to follow me up every 3-monthly, he even diddn't know why I was seeing him. he was unprepared! that even further swang my mood and I'm on a roller coaster ever since. so, in summary, nothing so far helped me. OK, I may be Ca free, but the fear of dying and having one to return remains ever since. wish either I had the strength to end it all and soon, or to have further strength and understanding to carry on normal life as I had before the hysterectomy.

sorry to be so pesimistic. hope you're OK?

BW

rak