ovarian cancer ,granulosa cell tumor,

Im new to this and have just been through staging laparotomy TAH and BSO and removal of the omentam i had a cyst on my right overy which was the size of a rugby ball. I was diagnosed with granulosa cell tumer and it was completely contained and removed stage 1c 2 The gyny oncol asured me i need no chemo as this is now not proven to help with this type of tumor. that to me does not at the moment help me understand what will now happen to me. i have been advised i will need bloods called inhibin done every 6 months to check all is well for the next 10 to 15 years. although told to not worry and go and live my life i cant stop looking for more answers what if it returns? what am i looking for? how will I know if it returns? am I living with cancer? or am i free I don't know how I should feel x

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36 Replies

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  • Hello, welcome to our site. I hope you are recovering well from your operation. I have no experience of granulosa cell tumour but I have heard that chemo is not usually required for it. I'm sure someone will come on line soon and be able to answer your questions.

    All the best!

  • thank you very much , I will hope to hear from someone ,, take care x

  • wishing you well not familiar with this type of Ovarian Cancer but I am sure some ladies will be able to help you in the next day or so,

  • thank you so much for your response xx

  • A friend of mine has lived cancer free for many years with this type of cancer.

    She had no chemo but followed up by blood tests and clinical assessment.

    She is 57 years old now and discharged .

    Hope this helps.

    There is an American forum for this type of cancer.

    Take care x

  • many thanks for the help. x

  • Hi Linda. I'm also not familiar with your type of cyst/tumour. Many of us with OC aren't diagnosed until our cancers are more advanced. In my case it was 3c - that tells you that it'd spread and growing in other places too. Reading between the lines, I think you're currently feeling shocked & confused. We all completely understand that. It will settle. I'm guessing that your cyst/tumour turned out to be benign. 1c is a low stage. Needing bloods tested every 6 months tells me that your onc probably isn't anticipating your cyst/tumour will re-grow, altho' I'm not a medical person, so can't make a judgement. I'd suggest you do exactly as suggested - go and live your life and don't worry. However, it's always a good idea to keep a wary bit of caution in the depths of your brain. I don't imagine, from what you've written that you're "living with cancer". Your onc would know if you were and would want to check you more frequently, I should think, if that was the case. How will you know if it returns, you ask. Perhaps if you had symptoms that led to its discovery, then keep those in your memory in case they ever show up again. Best wishes. Pauline.

  • awww thank you so much for your confidence , it was a malignant tumor not benign . but they don't know much about it , its worth looking into it for many people don't even know it exists. I started bleeding after my menopause and that's how it started I'm 55 now ,, thanks again x

  • This type of tumour is not benign but rare.

    Only 2% of women is diagnosed with this type.

  • yes that's the one ,, thank you for your reply x

  • Hi

    Its a scary time even when you think you know where you are- in my humble opinion I think it would be helpful if you ring your CNS or Gynae nurse and have another chat today. There's so much to take in we reel at times.

    The following link will hopefully also help you and may guide your questions

    cancerresearchuk.org/about-...

    Plus the main OvaCome site has a factsheett about germ cell tumours here - fact sheet 12

    ovacome.org.uk/information/...

    You can also ring the freephone help line on this site (OvaCome) and that may also help.

    Thinking of you

    Clare xx

  • thank you claire , I will investigate your links , take care xx

  • I was diagnosed with granulosa cell tumour 9 years ago, & there have been others on this site with GCT too. It is a slow growing rare cancer. Mine was removed at the time, & staged at 1c. I was told that chemo was not usually given after surgery with GCT as it tends not to be very effective, & I was likely to live for a number of years without a recurrence anyway, & was needing no treatment. I too started to have inhibin tests done. This isn't usually done for other types of ovarian cancer. The usual one, which most ladies on this site talk about, is ca125. This, I understand, is rarely raised in GCT. If you get a recurrence, inhibin may be raised. I was one of the unlucky ones, that mine did start to recur after a couple of years. I had no symptoms at that time, it was suspected when my inhibin was raised, & they arranged for me to have a scan. I was told that the best treatment was further surgery, which I had. I am currently recovering from more surgery for GCT. It was seen on a scan before I was aware of any symptoms. But they didn't operate for some time, & before they did, I was feeling rather bloated & feeling full quickly after eating, common symptoms of OC, though if you read other posts, people's experiences may vary. But I didn't feel ill. Naturally, I hope you are more fortunate. It is natural after diagnosis to feel scared & worried at first. I found it was on my mind all the time. But life after GCT does go on. I continued working for 5 years till I retired, have had holidays, & done various things. Hoping you have a recurrence free life. Di

  • hi di, I'm so sorry you have endured more surgery and yes hope I don't need to ..thank you for a fabulous message with lots of help and information its wonderful to hear from you. what I cant come to terms with is that this can come back so are we never in remission or do we live with cancer, I don't understand that part. and also I'm going to see friends in Canada in july,how do i do holiday insurance. shall I just tell them nothing ... xx' again thank you di.

  • You may find the Ovacome helpline helpful for answering some of your questions. I think this is the right number - 0800 008 7054. It's open from 10 till 5 Monday to Friday. I realise it's all very scary at the moment. After my first surgery, I found it difficult to see life beyond my next check-up. Now, 9 years later, although I admit that there have naturally been emotions along the way, I'm recovering from more surgery, & looking forward to getting on with my life again. Two weeks till I can drive again. Yeah!!! If you search, you may find various posts from people about insurance. The first time I went abroad after initial diagnosis, I just went with an ordinary company that didn't cover cancer, and was fine. I think I mentioned that I'd had cancer. Next time, I wondered whether I should use one of the specialist companies that do cover cancer, just in case, even if I didn't think I had any cancer present. I found that people on here had given info about companies they had used. Some are cheaper than others. Some are very expensive. So far, thankfully, I have not needed any medical treatment when travelling. Two that a lot of people seem to use are MIA & Insurewith, but there are others. But I am not an expert on travel insurance to aim to advise you what you should do. Good luck with everything, & have a good trip to Canada. Di

  • thanks di . your messages have been very good for me please keep well and god bless xx

  • hi di , did you have the bloating although you had hysterectomy total,, was wanting to ask what I would be looking for if I did get a recurrence xx many thanks , I hope your well , I would love to hear your story xx

  • With my first 3 recurrences, I had no obvious symptoms, just a raised inhibin, & new tumours seen on scans, & I had further surgery. The last recurrence (in 2013) was also seen on a scan before I had symptoms. The cancer had spread, & there were 4 tumours. The surgeon was reluctant to operate again, & referred me to the medical oncologists to see if they could help me. They tried chemo & hormone therapy, which helped a bit, but were of limited help, though one hormone treatment helped for a year, causing some shrinkage of the tumours. I did after knowing I had tumours for some time (I can't remember how long) start to feel rather bloated, & as the tumours grew, I began to feel full most of the time, though I didn't feel ill. At the beginning of this year, the oncologist I was seeing suggested that, as nothing they had tried seemed to be helping any more, perhaps the surgeons could be asked if surgeons could be asked if surgery could be an option again. My previous surgeon said no, but another surgeon operated a few weeks ago.

  • what stage were you ,,I'm so sorry you have had such a tuff time ,,, how are you feeling can I have an update ,,, I hope you are doing well xx

  • I was stage 1 c at original diagnosis. Staging hasn't been discussed since. I am now nearly 6 weeks post op, & feeling quite well thank you, though still trying to be careful what I do. Di

  • I am 7 weeks in now my gosh its all so hard ,, but glad I'm over the worst ,, I'm so gutted about your troubles . sounds to me from what you have said you are a fighter,, thank you so much for all your knowledge lots of love and thoughts coming your way ,, keep chatting would love to know how you are doing xxxxxx

  • What was the size of your original tumor? Hope all is ok.

  • di ,, I have just started following you so I should get more of your post ,, you have been through so much ,, all my love thank you for all your replys I have learned lots xx

  • My wife had a granulosa ovarian cancer and I read a lot about it during the course of her illness. As people have said it is a very rare cancer (between 2 and 6% of all ovarian cancers) Because it is so rare there is less known about it than the more common ovarian cancers and the general way it is treated is by surgery. Chemo and hormonal treatments do not have a wonderful success rate. From my reading of stuff on the internet it invariably does return but for many women this can be many years later-some women have only had a recurrence after over 20 years. It is often picked up early as unlike more common ovarian cancers, it does have quite specific symptoms-in my wife's case it was detected early on as she started having bleeding and was long passed her menopause.

    A positive sign for you is that they have decided they do not need to try chemo subsequent to your surgery. In my wife's case the cancer was identified as being aggressive right from the start and she was given chemo after the surgery even though , like you, she was staged at 1c.

    You will be offered monitoring at three monthly intervals with blood tests and CT scan at 6 months for the forseeable future. No one can take away the possibility that at some point it will return. If it does hopefully it will still be in one place and further surgery can be given. Sadly for my wife it returned within 6 months and had already spread so surgery was not an option. But I stress her consultant knew it was an aggressive form from the start and, I think, thought the chances of it recurring quite rapidly were high.

    My wife was treated with chemo and hormonal therapies throughout last year but none of them worked for more than a short while and finally they ran out of options and, once left to its own devices, the cancer spread very rapidly. She died about 6 weeks ago. I stress again that from my reading she was sadly in a minority to have such an aggressive form of the cancer.

    There is a unit in New Zealand called the Granulosa Cell tumour research foundation which is a good source of information about this kind of ovarian cancer with links to other sites as well. There is also an internet support group called the GCT Survivor Sisters. Both of these can be tracked down by inserting their names into google. I understand the support group is very active and supportive though we did not use them ourselves.

    Research does seem to be progressing into this cancer. They seem to have a good idea about which gene is responsibly for mutating and causing the cancer to start. Hopefully the research will provide better treatments in the years to come.

    I hope this will help. Everything that is said about learning to live with cancer and making the best of each day is all true. It is how my wife, Suzanne, looked at things for the two and a half years she survived beyond her diagnosis.

    Take care

    Andy

  • thankyou , I have joined survival sisters its just amazing already learned loads and they are inspirational and so supportive xx I hope all is well with you , xxx

  • thank you so much for your reply it means a lot to me ,, I'm so sorry for your loss and wish you the best of health for the future. it is very reassuring when you realise you are not alone. I will look into the other named sights and like you I will continue to learn about this disease and hope to keep on track of new things in the future to help learn more x all the best

  • The last reply mentioned research into genes responsible for gct. My oncologist told me there is a gene mutation thought to be responsible, but thankfully it is not an inherited problem, so can't be passed on through the family. The gct research foundation of New Zealand has a document online giving a lot of info about gct called gct for dummies, which I have read. I joined GCT survivor sisters through facebook, though I admit I don't go there much. Di

  • I love facebook surviver sisters ,,, I have learned so much ,, and feel so blessed to have found all of you ,, how are you doing di ,, I cant remember if you told me your grade and stage of tumor ,,, all the best hoping your well xxx

  • Hi Linda I am glad you are finding the Survivor sisters helpful. I would endorse the paper found at the Granulosa Cell research foundation "for dummies" as being helpful and explanatory though the science is not easy if you do not have a background knowledge of cancer. I would also agree with the view expressed that there is no eividence to say that Granulosa can be inherited. I guess some day there might be an explanantion as to why the gene mutates and the cancer starts but for us it was just damn unlucky. I am well. Have up and down days. I wish you all the best for the future. Take care. xx

  • thank you ,, you take care to all the best ,, xx

  • My doctor is recommending BEP chemo for granulosa 1c2. should I do the chemo? I am afraid of all the side effects versus the chance of it doing anything. Plus I would probably lose my job due to the length of time off work.

  • Hi. I am not a doctor, but a patient. I too had Granulosa Cell tumour. Was told chemo is not very effective. My experience shows that the tumour shows up in ultrasound scans much before it shows up in blood tests (CA125, Inhibin, Estradiol, AMH). If it is not difficult, my sisterly advice would be for you to in for ultrasound scans every 4 months, in addition to whatever your doc advises.

    HIndia

  • What stage was your cancer? Did your tumor rupture? Mine ruptured and was 15 cm. THey recommended BEP chemo which is harsh.

  • Hello. I am relatively new with this issue as well. I understand the anxiety involved. I had surgery about nine months ago---same surgery.

    About three months after the surgery I visited one of the experts in this field and have done a lot of research on this topic since I am in the medical field myself. The protocol for monitoring that he advocated was every three months for one year, then every four months for a year and then every six months. So far, the recommendations are for lifetime monitoring because of the chance of recurrence, even at late stages.

    Recommended lab tests are inhibin B and antimuellerian hormone levels and you need to have pelvic examinations at the visits.

    As previously mentioned, there is research happening in this area--very hopeful.

    If I find out anything else on my recovery journey I will be happy to share. I check the research sites every week to see whether or not there are any new publications. I know there will be--just a question of how soon.

    Best wishes for ongoing recovery!

  • My doctors went to tumor board for 1c2 granulosa and they want me to do BEP chemo.

  • Hi. I too am not a doctor. Nothing I say here should replace discussing this with your consultant. Second opinions are, I guess , a possibility but we never found anyone who we could feel was any more expert about this kind of cancer that the consultant we were already using. As I said previously my wife, Suzanne, had chemo after her surgery as they were concerned that her particular type of granulosa was aggressive. In fact at that time she had another chemo Carboplatin/Paclataxol. In your case it might be that they are recomending BEP (which Suzanne also had later) because of the rupture which may mean that the bastard cells might start sprouting somewhere else. When Suzanne had her recurrence tumours appeared in her vagina and her lungs so they couldn't operate in two places at once. It was then that she had the BEP. It is true that the most effective treatment for granulosa is surgery with subsequent monitoring to see if it recurs. True, the chemo is not felt to be very effective (though of course this is statistical and doesn't mean that for any individual it may be more effective.) It is also true that BEP for Suzanne was awful and it would be unfair to hide that. The alternative that Suzanne tried were the hormone inhibiting drugs. She tried Anastrozole, letrozole and Tamoxifen but none of them worked for her. I am sorry I cnalt tell you what to do. It has to be your decision. I guess with all cancer treatment there is a risk that it might not work and a possibility that it will work. No matter who you talk to no one can say how it will be for you. They can only comment on their individual experience which might not be the same as yours. You have to balance this with the possibility of the effects the treatment may have on you. There is no escaping that once you have been diagnosed with cancer you are plunged into an uncertain and scary world. I wish you all the best with a difficult choice but please discuss this further with your consultant. I don't know if they would be able to quantify the risk of the various options that are there.

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