Juvenille granulosa cell tumour

Hi there.

I'm new to this site, I had a granulosa cell tumour when I was 22 years of age.

I'm 44 now.

My periods had stopped but the doctors said not to worry sometimes this happens. After a few more months I went back as we wanted to try for another baby and couldn't without periods so my doctor referred me to the hospital. I had internals and blood tests and was under the hospital for a while they said that they couldn't find anything wrong and eventually my periods would start back.

I had another appointment a while later and was told that they could find nothing wrong and to give it a few months maybe stress was causing my periods to stop, but I had already found a huge lump in my stomach that I could move around. Also I had started growing fine hair on my chin and my voice was deepening which was really strange. (this was caused by testosterone that the tumour was giving off). My husband told the doctor about this lump and he sighed and said jump onto the bed and he would check again but as they'd already checked so many times he was sure he wouldn't find anything. He felt the lump straight away and thought that I was about twelve weeks pregnant and told me to come back for a scan in the afternoon. Thats when they found a mass. I was sent home and told to come back on the monday. I was then seen by a consultant who couldn't understand what all the fuss was about as it was a very large fibroid and said they would send for me to have it taken out. I was booked in about six weeks later but then sent home at the last minute as an emergency had come in.

I eventually had the operation a few weeks later after having quite a bit of blood loss which when I rang the ward was told great thats probably your periods starting backe again.

After the operation the consultant and doctors gathered around my bed and said that it wasn't a fibroid after all it was a tumour in my right ovary which they removed as well as the ovary. I was really scared and asked if it was cancer and they said they didn't think so but they would have to wait for the test results.

Eventually when I went back to the hospital for my check up they said that they were trying to be economical with the truth and that the type of tumour I had was rare and they didn't really know what the outcome or treatment would be. Luckily I didn't have to have chemotherapy thank god and was kept an eye on for five years.

I was just wondering if anyone has had the same thing and maybe had an early menopause as I've started to have really bad night sweats.

Sorry to go on for so long. I never know how to keep things short.

11 Replies

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  • Hi Rhian

    Don't really know if I can help or not. I was diagonosed as having a GCT after its removal last year along with an hysterectomy and oophrectomy. I'm 63 now and didn't really have any side effects of the menopause [I took HRT] until after this op.

    I get hot flushes all the time now.

    Doesn't really help does it? Perhaps you are just starting the menopause normally. I'm just glad to hear that you don't seem to be having signs of another GCT.

    Love

    Anne

  • Thank you for the reply Anne.

    I think your right it probably is the start of menopause.I'v just had a mirena coil fitted, but this hasn't helped with the sweats at all. Great for the heavy periods though.

    Yes Anne so lucky that the tumour hasn't come back. It's never that far from my mind.

    Hope you keep well

    Rhian

  • Hi Rhian

    I had an op nine years ago and was plunged straight into menopause after the HRT implants wore off. I find that drinking soya milk daily and wearing a magnet called "Ladycare" has helped, if you are staring the menopause. You can have a blood test to see what levels your hormones are to see if it is the menopause. If you type "magnet" into the search box at the top of the page, you should find all the pros and cons. I wouldn't be without mine!

    All the best

    Wendy xx

  • Hi Wendy

    I've never heard of a magnet but i will certainly look in to that now. Thanks very much.

    Rhian

  • Hello Rhian

    I am now 45 and when I was 44 last year I had an operation to remove a granulosa cell tumour.

    One month before my 40th birthday my periods stopped and I did not see another one until April 2010. I thought that I had started the menopause early so never thought anything else of it, my mother had a last period at 42. By 2010 I expect that my abdomen had started to look swollen and become firmer and with the periods starting again I began to think that something might be wrong. I did put it out of my mind though for fear of knowing the unknown. My other half also was concerned I guess that is his nature as he is a pharmacist.

    By the end of March last year I had a DVT, pulmonary emboli and an ovarian mass which turned out to be a grade 1a granulosa cell tumour of the adult variety. I was on clexaine and warfarin for over 6 months and am on 3 months follow up, which has now moved to 5 months as my appointments have been cancelled twice.

    I had a totally abdominal hysterectomy and fell straight into the menopause. My thick hair started to come on while on the warfarin but settled down in a few months. I did not need chemo, I had had counselling and reiki which I arranged through a local cancer charity.

    I am trying to get back to some normality but I will never forget what happened to me. I guess that I just learn to live with it as best as I can. I guess that every woman has a different journey, I just thought that I would share mine with you.

    Do you still have follow up Rhian? How do you feel all these years on? Do you have any specific blood tests if you do have follow up?

    I was made redundant while off sick which was another blow but I have started doing my degree with the Open University again! I start Spanish next weekend, I had failed a module but passed it again in December 2011, that was a management module. I will work again when I feel ready, I hope to do this soon. My degree was taking shape then I was sick but you cannot help this. I realise that health is by far more important than getting my degree as you need this to do everything else and it has been for interest rather than a career. My mum and my other half have supported me and I do not know how I would have got on without them both.

    Wishing you all the best

    Cookieholmes!

  • HI Cookie Holmes

    Thanks for sharing your experience with me. it helps when you hear other peoples storys. To be honest I have been feeling alone with this for a long time so It's so nice to find this site.

    To be honest I still have nightmares occasionally., not as much as I used to .

    I dont have follow ups anymore, but my doctors are really good and if there is anything to worry about, they refer me to the hospital. I was recently referred because of really heavy periods and the doctor could feel something there, the only thing was it took six months to get their as she sent me a as a non important appointment, that was a bit of a stressful six months.

    I was referred for a Mirena coil, when I got to the hospital the doctor asked me some questions about my history as she didn.t have my medical notes.

    I;m just wondering now if it's safe to have a Mirena coil after this type of tumour and Hrt .If anyone could give me some information I would be so grateful. Unfortunately I've developed a bit of a phobia with doctors so I'm out of the door before i'm in and so dont ask many questions

    It's great that you have support, it really helps. I dont know how my husband puts up with me i think he deserves a medal. I dont have any other family support so take everything out on him.

    I do feel really lucky though as so many women on this site have had so much to go through with their treatment any everything, I really feel for them.

    Thanks again Cookie

    Rhian x

  • Hi there Rhian

    I am so sorry that you had to go through this at such a young age.

    I had a borderline mucinous tumour removed two years ago at the same time as a TAH / BSO. There was lots of mix up and delay with diagnoses and I ended up going back to work not knowing whether or not I needed chemo or radio therapy.I didn't thankfully. I had ongoing abdominal pain and was referred for a surgical opinion. Almost the entire incision was reopened 5 months after the first operation.However two years on I am now much much better.

    The whole thing has left me with a total hospital and doctor phobia, you went through so much more so I can totally understand how you feel.

    To answer your questions I have been on oestrogen only HRT patches since the operation and my consultant assures me that this hormone treatment is safe for people who have had ovarian cancer. To be honest I couldn't have coped without it in any case . Some other ladies have been told to try to avoid it , but I had terrible menopausal symptoms from the day after the operation, so it was definitely needed. I think we all have to weigh up benefits from treatment, for us and those around us, with the risk of side effects.

    It may be that you are starting the menopause, your GP can do blood tests.If you are then oestrogen will treat the hot flushes, as well as emotional ups and downs.

    The whole thing is very hard on those around us.However if your hubby was unwell I'm sure you would have been even more supportive.

    I hope this is of some help

    Take care

    Charlie xxx

  • Thanks Charlie

    I am so glad you are feeling better now. You too have been through a scary time.

    Thanks for your advice about oestrogen I will have a word with my doctor this week (thats if I stay in there long enough}. I'm getting really tired because i'm waking up so much in the nights, so it's certainly worth a try.

    Thanks again Charlie and take card

    Rhian xxx

  • Rhian hello again

    The consultant told me the other day that hormones might not be relevant for me due to having migraines. Also the granulosa cell tumour may have been producing oestrogen and also due to the fact that I had DVT and pulmonary emboli it looks like a no go.

    I discussed natural methods with the clinical nurse and she told me that I need to approach things with caution as they are still hormones. I can take medication for hot sweats if need be, my other half had mentioned that to me, it is clonadine he said. I used to take this when I was a kid for migraines, it's brand name was Dixarit then.

    I saw yet another different doctor, someone I had never even met before, the one who did my surgery never seems to get involved now. I was informed that there would not be any routine blood tests during the follow ups and was concerned about that. The one the other day did order blood tests so that is a step forward. I feel now that I absolutely must have these and will pay for them privately if the hospital hum and ah.

  • How have ladies coped with returning to work after treatment? I feel that I will work again when I can but just want to get on with things and not make a fuss about what happened to me. Has anyone done a phased return or gone down to part time hours? Would be interested to see. Thank you again.

  • Hello girls, I'm really new to this I've been reading all your stories,and just found the search and put in Granulosa !!! I'm 46 now and was diagnosed in April 2011 with o c but prior to that in2005 was diagnosed with a different cancer so u can imagine being misdiagnosed ! Luckily if u can call any cancer lucky (not)it was the same treatment to b surgically removed. Which was done in 2005 then in feb last year. Have been told that it is low grade but it does reoccur ? The nodules I have have got bigger so another op looming this year and a hysterectomy. But this is a double whammy now !!!! had a ovarion cyst removed and overy in 98 said it was benign. They now think it stems from there trying to prove this is another story sorry for it being a story but that's my bit added to all your wonderful and sometimes amusing comments xxx

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