Granulosa cell tumour

Hello Lucy,

I'm sorry you haven't had any replies to your post yet. As you say I s a very rare form of tumour, and there may well not be anyone else on here regularly who has it.

Here is a link to some information about this type of tumour in case you haven't seen it. www.cancerresearchuk.org/.../granulosa-tumours-of-the-ovary

I hope your appointment goes well and they are able to reassure you. If you have any concerns or questions remember you are always welcome to call the helpline, 0808 808 0000.

Hi Lucy

So sorry to hear about your situation. As Lakeslover says it may well be because your type of cancer is pretty rare that there aren't many ladies in the group with experience of it. 

I don't know if you are familiar with the charities that deal specifically with ladies with a diagnosis of ovarian cancer? Ovarian Cancer Action, Ovacome and Target Ovarian Cancer (links) are all very useful sites which you might like to explore to see if you can get any more information/link in with ladies in the same situation. Here is a link to some information on the Ovacome site which you might like to take a look at.

Wishing you all the best.

Sue x

Thanks for pointing me in the direction of these other website. There's so little about this rare form of ovarian cancer. If there is anybody will the same condition would be nice to make contact.

Hi Lucy, 

I have had the same diagnosis last Thursday. I can't currently tell you much more than you know, but maybe we can find out stuff together? I was feeling bloated and started to look pregnant, (I am just 53!) but put it down to some antacid I was prescribed, til I stopped eating and start d being sick. I endeup in A & E, where they took me into a ward and drained me, doing various scans. They initially thought I had the standard ovarian cancer. Like you, I had cysts, and showed a thickening of the omentum, or stomach protector, but they now think that's was connected to the fluid I had built up irritating the stomach. I was told the size of the cysts and various other things said it was most likely to be ovarian cancer,  and I would probably have sessions of chemo and then a hysterectomy further down the line, but they have now discovered that it is in fact granulosa cell tumour 1c2, following an unscheduled full hysterectomy as one of the cysts burst. They seem much happier with this type of cancer, as I think seems it rarely recurs, and the monitoring process is quite sensitive. I feel lucky that it's been found, and grateful that it isn't something they have managed to remove without the need for chemo. Can I ask how old you are? It was all very quick and a bit of a shock, especially as it went from possible appendicitis to ovarian cancer, to this granulosa cell tumour that no one seems to know that much about!  

Hi Lizzie

Thanks for getting in touch but I'm obviously sorry to hear you have been diagnosed with granulosa cell tumour.  To answer your question I was 55 when diagnosed (stage 1B) in March 2016 so a similar stage to you.

There really is very little information available about this very rare form of ovarian cancer. My consultant has only seen 3 other cases in his 10 years in his current job.  You are the first person to get in touch in the last year.

Know you are not supposed to google things and stick to reputable websites like Macmillan but I found a support group in the US and some good research in New Zealand.   

Like you was very thankful not to have had to go through chemo. Whilst not nice that it can come back at any stage in your life it is reassuring the be constantly monitored.  I have blood tests every 3 months and a CT scan every 6 months so hopefully any recurrence would be spotted quickly.  Apparently after 5 years monitoring is only every 6 months.  You may also need some other tests - I needed a biopsy of the lining of my stomach as like yours there was some thickening.  Thankfully the results were fine.

The best advice I can give is simply to be thankful you were diagnosed early on and to make the most of life.  It may seem strange but a year on I've virtually forgotten about it other than when I go for tests.

Take care.

Lucy

Thanks Lucy - have only just realised it was a year ago you were diagnosed, not last month! Thanks for the reassurance, I am hoping too that it becomes just something I do every few months, & that other than that, there will be no other reminders! 

I saw something about an NZ research group, but haven't found the US support group - do you have a link? Was it useful? My consultant has about three cases too - I guess it's good not to  be run of the mill! I am waiting for my oncology appt with the hospital, and to go to a Force presentation, but feel a bit of a fraud, as theoretically we don't have cancer anymore, but will gomjust to see what's on offer. I a man still off work, as it's onLyntwomweeks since my hysterectomy, but hope to go back in about two weeks. Hope you continue to do well, and make the most of life! 

Bless you there's no such thing as standard ovarian cancer but most of us had never heard of it had we ?let alone the many different types. 

OvaCome has great fact sheets of all types so if you haven't already found the UK based ovarian cancer site then have a look. I think it's Fact-sheet No 12. 

Think of all your questions, write them all down and ask every single one. 

Take care xx

Thanks Clare, 

You're right about not having heard of this before - I was given that fact sheet as I was diagnosed, which was very helpful, I had no idea there were so many kinds! I am now trying to find any information about granulosa cell tumour, as there seems to be so little known about it. 

I do certainly consider myself one of the lucky ones, am still after more information, and I just wondered if anyone out there has any advice on plant oestrogen? Clearly I can't go on HRT as it wOuld skew the figures tracked at blood test time. I also have been advised against health food type substitutes, for the same reason, which makes sense. I eat a fairly healthy diet, but realise that most of those things are also high in plant oestrogen, such as peppers, broccoli, seeds, carrots, tomatoes, most pulses ..... I imagine that these are much more dilute, and that hopefully I don't need to stop eating them, but does anyone know if there are items that should be avoided or any that promote good health with this particular type of cancer? I tend to steer away from red meat anyway....

It's a whole new world isn't it? I know this site would rather the help and support comes from here however if there's no-one who can give you additional "I've been there and this helped me" then there are a couple of other sites that MAY provide what you need: INSPIRE.COM (mainly US but lots of us post) OvaCome.com (mostly UK but anyone too) 

You may already have found these.  

Keep asking your nurse too

Clare xx

Hi Clare

Many thanks for this info.  Inpire.com has some info I hadn't seem before  Granulosa Cell Tumours. 

Like Lizzie, I'd be very interested to learn about healthy eating habit to follow to try to prevent a recurrence. Am now avoiding all processed foods (not that I eat much before) and red meat. 

Have suffered from hot flushes, accompanied by a total loss of energy since my hysterectomy.  My consultant said it was OK to try acupuncture which unfortunately didn't work. Am now trying wearing a strong magnet (from magnetix) which, whilst not solving the problem, seem to make the hot flushes less sever and less frequent.  My consultant also said magnets were OK.  

Lucy