In the middle of May I collapsed and was rushed into hospital, it turned out that one ovary had burst and I had emergency surgery to remove the remains and stop the internal bleeding. I was told that everything inside looked fine and I went home not suspecting anything. At my follow up appointment with the surgeon a month later I was totally shocked to find out that I'd had a granulosa tumour and was sent for a CT scan and blood tests to find out if it had spread and advised that I would need a hysterectomy. Yesterday I went back for the results and have been told I am completely clear of cancer and that is all that is needed, although I will need follow up blood tests for the next couple of years.
Great news and I'm over the moon but the surgeon said that I have not had the ideal treatment for the disease. If the tumour had been found in normal circumstances I would have had a full hysterectomy. He has left the decision on having the full surgery to me, he would be happy to carry out the operation as I am 49 and would be menopausal soon in any case. So now I have to decide! I am only just recovered from the major operation following my collapse and I don't want to have another operation if it is unnecessary., I would much prefer to remain intact ...but I also don't want to put my health at risk by not having surgery only to find that the cancer returns.
So, does anyone have any experiences that might help me come to a decision? My reading has shown that granulosa tumours are pretty rare, but also less aggressive and I'm torn trying to decide what is best!
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homphomp
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I would ask for the stage and grade of the cancer found, ask for a second opinion if you like, and then make your decision.
If it were me I'd have the surgery and possibly ask for some chemo as well. But it sounds like good news for you because it appears to have been caught at an early stage, which makes a recurrence unlikely. A full hysterectomy and removal of the other ovary etc., is major surgery but since you have just undergone major emergency surgery a similar op planned in advance shouldn't be too tough, however you will probably experience a sudden surgically induced menopause, which caused me awful problems when it occured naturally and yet further similiar problems after major OC surgery. I'd ask your surgeon, if possible, to try to find out whther your tunour is oestragen sensitive or not. Some women depending on the results of this test can take HRT, some cannot ever take HRT, in which case you will need to ask your surgeon the best way of relieving your symptoms.
Hi. I am 43. I have had two major abdominal surgeries since March. First to remove very large ovarian cyst. Then due to it being cancerous with a rare mucinous type and more cancer being found at cell level i had a second operation to do full hysterectomy, including omentum and appendix at the beginning of June. I got through both fine and though tough, i am now in week 6 after the second one and doing well. So from the point of view of two operations not too far apart I can confirm it is manageable if you focus on getting as fit and healthy after the first before embarking on the second. I had ten weeks between mine.
What I think you need to keep in mind is cancer is not just tumours but cell level to. So even after my second operation they still found more cancer cells. The hysterectomy means they are removing possible future sites which of course is a positive thing and needs to be considered but getting as much information about your condition as possible before making your choices is also important.
I would as Chrissie says find out the stage, also have you had Ca125,CA19.9 and CEA markers checked via a blood test? These will give you more information that will allow you to make a more informed choice.
Good luck and best wishes from a girl hiding in the Alps.
If it were me I would go ahead like Chrissie as we can see that Alpegirl had to endure 2 ops! Let yourself get well from this one and be positive about the next one. You may always have 'the wish I had' syndrome if you refused the second op but if you go ahead then you have taken all the steps you can do to prevent this horrid disease from spreading. The surgeons know best and he may be able to go in thru the same scar perhaps. I wouldn't worry too much about the menopause - that can be managed if it happens by your GP - but surely it is better to know that you are cancer free.
I had a hysterectomy and oophrectomy in February as an ovarian cyst had been found. Nearly six weeks later I was told that the cyst was a granulosa cell tumour but no further treatment was needed. I am glad that I had the ' full works' as although the specialist I am now seeing descibes this particular type of tumour as 'indolent' i.e. quite lazy it is possible that it can reoccur but possibly decades later.
I think, although it is more surgery, I'd take on board all the other replies you have had and go for it.
There is a New Zealand support group for GCT that I have joined which has the latest research reports as well as helping to fund on-going resarch projects. GCT is quite an exclusive club- none of us have wanted to join but at least there is a very positive prognosis.
I am one of the support line nurses at Ovacome. If you would like to discuss this further you are welcome to give us a ring on 08453710554. The cancerhelp Uk section of the cancer research uk website has a whole section explaining about Granulosa Cell Tumours. They do tend to act differently to the most common type of ovarian cancer and as one of the posting mentioned surgery is often all that is required although they do need follow up as they can recur later than other tumours might.
It might be worth asking how soon the operation needs to be done or whether you could wait a short while so that you have a chance to recover from the previous surgery
I realise it must be awful trying to make the decision right now, when you're feeling so confused, but I had the op (full works) nearly 9 years ago now, and I'm so glad I did. I didn't even need chemo after my cancer was found to be borderline (in both ovaries and omentum). My CA125 tests have been consistently low after a measurement of 545 before my op, and I had HRT implants for a year after the op to allow me to cope with any after-effects and get back to full health. Do ring Ruth or one of the nurses though. They really are so helpful.
Good Luck with your decision, but as another person said, if you don't decide to go ahead, you may always be unsure of your health ....
P.S I saw my surgeon about 9 years before my OC and he recommended a hysterectomy then, for some irregularities that were not OC at that stage. I disregarded the advice and decided to keep going naturally. Would have saved myself a whole lot of trouble if I'd gone ahead when it was first recommended! :-O.
thank you all so much for your advice...you are echoing my own thoughts on this one. It's so good to get advice from others who have been through the same issues as you can understand where I'm coming from!!
Hi ladies. am 42 with 3 young children & just got diagnosed with granulosa tumour on left ovary. Having ovary & fallopian tube on left side removed shortly, when the tumour will also be staged. I had diagnosis by CT & venous sampling directly from ovary, which showed it is secreting massive amounts of oestrogen, but signs are it hasn't spread, although they need to confirm once surgery complete. Should i push for subsequent full hysterectomy to prevent recurrence?
Hi! I think I answered you on another discussion, but if I were you and you are done having children please insist on a full hysterectomy. You will have less places for the granulosa cell to redevelop.
Good morning and welcome to our site. I am sorry that I am not able to answer your question. You have actually responded to a very old post and the person who wrote it has not been on this site for a long time. I suggest you start a new thread by choosing to add a new question so that you are more likely to get a response. I hope you are taking it easy as it is so soon after surgery.
Hello Millie, I may not be posting but I'm still here! I can't see the question you were replying to but I'm happy to give some feedback if you can point me in the direction of who was asking a question? homphomp
Thanks Millie, I'm well, passing another anniversary of my surgery and another blood test to check all is OK since I took the difficult decision to stay as I was. Only time will tell if that was the right thing to do. Hope all is good with you too. Homphomp.
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