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 Bridie and Yorkie1

I am also interested in any advice/info regarding the Granulosa Cell Tumour as i've been told today that the "cyst" I had removed in Sept was one of these tumours (Grade 1C) and I don't know anything about it. I think i'm still in shock!

My periods stopped in April which wasn't uncommon for me as I have had numerous gynae problems over the years but I realised things were slightly different as I had a bloated tummy etc. My GP thought that I might have PCOS and sent me for a routine scan without even examining me as she did not think there was anything else to worry about. I had the scan early July which showed a 10cm by 10cm solid mass around my right ovary. I was immediately refered to the gynae oncology dept and after seeing my consultant twice he determined it was an ovarian cyst "probably benign".  I had surgery scheduled for mid Sept and was advised they'd perform a laproscopy to remove the cyst.

The day of my op arrived and when I came round, I found that they had had to perform a laparotomy (open surgery) instead of keyhole as the mass had grown from 10cm by 10cm to 16cm by 16cm - that meant it had grown 6cm by 6cm in 2 months! They also advised me that the "cyst" had ruptured and they had had to perform a chemical clean to make sure they had cleared anything that had spilled into my abdomen, but they were confident that the "cyst" content was benign and not sinister. They said they would send it for biopsy as a precaution.

I waited and waited to get the results of my biopsy but everytime I rang they kept telling me that they hadn't came back yet from the lab. Then 2 wks ago someone filling in for my consultants secretary told me they had been sent for a second opinion - alarm bells began to ring.  Everyone kept telling me that they were probably being thorough due to the fact my "cyst" had ruptured when they were removing it.  I rang last Monday and was told the results weren't back - then on Thur I had a letter telling me to go for an appt today. I just knew there was more to it.

So, I had my appt today with my consultant and he explained that the biopsy had shown that the mass had not been a cyst but instead had been a Granulosa cell tumour.  He said he'd asked for a 2nd opinion as in terms of ovarian cancer, it's quite rare with only 1-2% of diagnosed ovarian cancer being attributed to it, I was the wrong age (I too am 34) and my CA125 tests had been normal.  They hadn't even done an MRI or a CT scan as although they knew it was solid they were confident it was benign.  He explained that normal treatment is surgery to remove both ovaries and the womb, but since i'd had the tumour already removed (along with my right ovary and fallopian tube) and my hubby and I still wanted kids, that they were happy to leave my womb and left ovary etc as with correct monitoring I should still be able to have children.  I was then told I would be assigned a key worker and was sent off to another room to see her.

The Keyworker gave me slightly more info - it is not the same as the Ovarian Cancer we hear about in the press which is aggressive, but is a slow growing rare type of cancer which is hormone related and which can reoccur later in life.  I am to have scans and blood tests every 3 months to monitor my progress and further surgery will only be necessary if it returns. Unfortunately my keyworker was unable to give me any leaflets about GCT as she said it was so uncommon the dept didn't have any so she would have to get some for me and send them out to me! And when the nurse came to get a blood sample to check my inhibin levels she had to ask the Dr which blood sample vial to use and the Dr had to actually look it up in a book as he wasn't sure - just shows how rare it is!

I guess i'd like to hear from anyone else who's had this type of tumour who can give me more info about it and also for any opinions/comments/suggestions about the fact that I've been told it's a slow growing tumour, yet mine grew from 10cm by 10cm to 16cm by 16cm in 2 short months - doesn't seem so slow to me. Should I be worried about this?
I am hopeful that children will still happen for us as after having no periods for 7 months, it returned exactly 4 wks after my op and I know it's gonna appear any day now.  I do feel lucky to have found out after they'd removed the tumour as I feel I would have reacted/felt differently had I known before hand.

Yorkie1 I know what you mean when you say you feel like a bit of a fraud - I actually had to justify myself to my sister in law tonight who questioned what my consultant had said - she said to me "you know not all tumours are cancerous so this one might not have been". I explained to her that yes it HAD been cancer but (hopefully) it was gone and wouldn't be coming back. 

Thanks for listening - any advice would be appreciated.

PS) Yorkie1 it's lovely to hear that you are 14 wks pregnant - congratulations!

Hi Musicgirl77,

Welcome to Cancer Chat.

As your keyworker was unable to give you any information leaflets, I thought you might be interested in reading the section on our information website about Granulola Tumours of the Ovary.

I hope you find it useful.

Best wishes,

Renata

Cancer Chat Moderator

Musicgirl 77,

Just read your message on here.  I realise you posted it sometime ago, sorry for not repsonding sooner.  I was really pants during my pregnancy at keeping up with this site, mainly due to trying to concentrate more on my pregnancy rather than my cancer!

It certainly sounds like your tumour grew quite quickly, which does seem to go against the slow growing myth!  I don't know how much mine would have grown as mine was removed quite quickly as we were waiting for IVF.  I just wanted to reply to you with regards to having children. I gave birth to my beautiful son at the end of March (he was 12 days early and prefectly healthy), and I had regular scans throughout my pregnancy to check on my remaining ovary, and thankfully all was well. It is still in the back of my mind though, now that I have given birth, that it could come back, but I'm trying to stay positive and am hoping my periods return to normal again, as at least they should be able to let me know if things have gone wrong again.  I have no idea if my consultant will still want to see me for a follow up, as it was kind of left up in the air.  I have a feeling she won't want to see me, as I was kind of discharged from their care before my pregnancy.

If you do decide to have children, don't let this deter you or make you think any differently.  Look to the future and have faith.  I look on it as having a bloody lucky escape in the grand scheme of things!!!  Good luck if you do decide to have children, and if you do find anything a bit more definitive out about this type of tumour let me know .

Sorry again for the delay in replying, I'm rubbish at keeping up to date on the internet, even more so now I have a 6 week old baby that is constantly needing feeding lol!!!!

Yorkie1 xxxx

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

Just picked up this site and read yours and the other ladies posts. I was diagnosed with GCT in Jan 2007 having felt a small lump in my lower abdomen Dec 06. I was sent for ultrasound which revealed a 7inch "cycst" on my right ovary. As I was 49 at the time the consultant suggested total hysterectomy. I had surgery 3 weeks later by which time the "cyst" had reached almost 12" and I looked 6 months pregnant. GCT was diagnosed post op. Rapid growth is due to the stimulation of the tumour from the estrogens produced in the ovaries - it becomes self-sustaining. By removing the ovaries, you cut down the source and it slows the growth. This is a very simplified version, but gives the gist of why some of the tumours seem to grown faster at certain times.

I was told it was a very low grade cancer, that I would be unlikely to see it again - if I did it would be in 20+ years. I was however told I needed 6 monthly blood tests for inhibin A & B. Because of lack of knowledge, I was given HRT which made life quite pleasant post op!

In Aug 2010 I received a letter from my consultant advising me that my inhibin levels had risen from their usual bottom of the scale levels and I went to see him. 2 CT scans Sept and Dec 10 showed nothing but my inhibin B had climbed to 344. I went into hospital for an exploratory laparoscopy in Jan 11, for the docs to discover a 7cm tumour in my abdomen and several small tumours in the pelvic gutter. These were all removed and I was referred on to GYN/ONC. I was about to be started on chemo, but at the last minute the oncologist decided not to put me through it as there was no residual disease, so nothing to monitor the effectiveness of the chemo and would save me from the nasty side effects. I was taken off the HRT as they suddenly cottoned on to the fact that this was probably a bad idea!!

Following the op last year my inhibin b went down to 28, but has steadily risen again over the past 18 months, culminating in another small tumour in the pelvic region and suspicous cells on the surface of the liver. I am due a CT scan next week and follow up early Nov to see what the next step is. I found this past year extremely difficult to cope with, as you begin to realise that it isnt going to go away. Having said that, I went to see someone to help give me coping strategies and that has been incredibly useful. I have been able to put things in perspective and realise that although this cancer is in my body it IS moving very slowly and it DOESN'T stop me from living. In fact, I ran the London Royal Parks Half Marathon at the beginning of this month - not too bad for someone who is 55 today!

The only advice I would give to all of you, is that you must insist on lifetime monitoring. It only needs the inhibin a and b tests every 6 months to keep an eye on what is going on - I used to go my GP for these and the results would get sent back to my consultant and GP. This will give you the heads up should something be starting to grow, before it gets too embedded or serious. This way, it can be managed and you can live your life normally. I do not want to scare you, but I think it important especially if you have an ovary which will naturally be generating estrogens. The other issue is that there is little point having the CA125 test as it will nearly always come back negative for this cancer - it really only picks up on the more common epithelial ovarian cancer.

Congratulations on the birth of your son, Yorkie1 - I hope you are getting more sleep these days!!

Hope this finds you all fit and well and long may it continue. xx

I'm so glad to find this tread.  I too was diagnosed with GCT and also only after the tumour had been removed (Sept 2007).  On the original scan they diagnosed polycystic ovaries but luckily my GP felt my symptoms indicated something else and she asked for additional tests. It turns out that the increased hormone levels from the ovarian cancer had promoted the development of endrometrial cancer.  The endrometrail cancer was recognised when the other tests my GP asked for were carried out.  I had a hysterectomy for the endrometrial cancer and they removed my ovaries too.  After the ovaries had been removed I was told 'there's something odd about the left ovary - its been sent away for testing.  They told me at my next appointment about the GCT.

I'm grateful that it was found and that the treatment I've received was so quick and efficient.

I'm now five years on and there's no sign of any recurrence - hurrah.   I feel like I've been so lucky and it took me a long time to accept being grateful for that rather than feeling like a fraud and wondering when the really bad stuff was going to start.  I know that so many people have a horrible time during their cancer treatment and I couldn't help feeing guilty that I 'got off' so lightly.  It's a relief to read on here that I'm not the only one that felt similarly.

One thing that's concerned me in the last few years is the matter of checking for recurrences.  Knowing that the GCT was only recognised for what it was after it had been removed and sent to the lab makes me wonder how likely it will be picked up on the scans and examinations I've been having.  And although my consultant has agreed to continue the checks for another five years he plans to stop then,  He's also said that the inhibin blood tests may not be useful because of the increased levels of this hormone in my blood because of the original tumour.  Thinking about it that was five years ago so I'll ask about that at my next appointment - which is just a couple of weeks away,

Thank you ladies for the extra information.

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!