Endometrioid adenocarcinoma?

I am 43. Back in February I had an emergency op to remove a twisted ovary. Histology suggested (not 100% conclusive) endometrioid adenocarcinoma. Advice was hysterectomy with removal of omentum and other ovary and lymph nodes. I refused to have lymph nodes removed and sought 2nd opinion. 2nd surgeon happy to leave lymph nodes as scan completely clear as is blood test.

This might sound crazy but I am still considering doing nothing. I am so well and I feel there is no more cancer in me (if that's what it was anyway). But I have to decide. The op is on the 21st and pre op on monday. I am terrified of making myself I'll for no reason and feel that I would be devastated (not relieved ) if post op histology said there was nothing found and the op had been for nothing.

Has anyone else had these feelings? I would love to hear from you. X

20 Replies

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  • Hi. Ive thought long and hard before replying. You have a very hard unenviable decision to make. I think if I were in your position Id go for the op. You have two surgeons both saying you need an op? what would be worse, having the op and finding out the histology is negative or not having the op and finding out you have a cancer that has advanced? I hope you dont think Im being insensitive, Im not, I can understand your fears about having a major op but trust me its not as bad as you think its going to be and I speak from experience, also Im a wimp lol. I wish you well and hope you come to a decision that is right for you. Kathy xx

  • Thank you for your reply Kathy. I really appreciate your response. It is not the operation so much that worries me ... it can't be more painful that the last emergency abominal op. It is facing a surgical menopause with no hrt to alleviate symptoms. I am terrified of becoming depressed and of my life as I know it being over ... physically and mentally. I had an emotional breakdown 5 years ago and I have fought back to health but I don't think I can fight against hormone induced depression. At the moment I am more scared of that than of there being more cancer. I know that's probably hard to understand for many people. Kate x

  • Hi Kate. no thats perfectly understandable given what you have been through in the past. Have you voiced your fears to the surgeon? maybe there is something they can offer to try and alleviate any symptoms you may encounter? xx

  • I have been where you are. I had cyst removed with ovary and tube. Then had surgery to remove omentum cervix and a TAH as a precaution. I was three years cancer free and doubted how wise I was to have the extra surgery. Then in 2016 it recurred a shock to me and my team who thought I was on the homewards straight. I was stage 1 with a CA125 of 7 after first surgery. This is a dreadful disease and recurrence is common across all stages. In your situation with the benefit of hindsight I would say have the surgery.

    LA xx

  • I think % recur depends very much on the cell type of tumour??

  • Stats are only stats and they don't feature an individual! To put this into perspective for you I looked up the stats for likelihood of recurrence for my situation which is clear cell stage 1C - rupture of mass and cells in abdominal fluid and that was approx 35 -37%. So a massive 65 - 63 don't have a recurrence PLUS stats are already 'out of date' ! You are an individual and that counts too!!

    Don't dwell on stats

    Take care

    Clare xx

  • Clare, thank you for responding in such a sensible and kind way. It seems awful that a health professional would give a cancer patient a statistic like that when they were undergoing treatment. I agree (100%!) that statistics cannot take the individual into account and as you wisely said 'are already outdated'.

    I also want to say a massive thank you to everyone who replied to my post yesterday. Your brave words have helped me accept and start to understand my condition. I will have the operation on the 21st.

    Another thing that helped was that I could feel my left ovary doing its stuff last night. For the past few years ovulation has been slightly uncomfortable and I thought it was just one of those things. .. now I see it differently .... other stuff might be happening too.

    Can I keep in touch with you all through this?

    Kate x

  • This is a great place to chat, ask, share and vent so please do keep chatting. Xxxx

    Clare xx

  • Hello Donut,

    I'm 38 and almost 3 weeks post surgery for the operation you've been recommended. I was more scared of surgical menopause than either the operation or the cancer itself.

    I don't know how long it takes for the menopause to kick in (had been suggested a few days to two weeks), but so far I have felt OK. I find it hard to believe that I'll be one of those people who will 'sail through' menopause without a problem (I mean, I got OC at 38 and that's pretty rubbish), but I've had a few hot flushes and haven't felt like an emotional wreck. There are still things I want to talk to the gynaecologist about, but I think I had made it all worse in my head. I have also been told that HRT could still be an option (depending on histology) - is there a reason why you say you can't have it?

    It's a big decision you face.

    xx

  • Hi Yoshbosh, thank you for your reply. I'm so sorry you are going through this so young. They believe mine was an endometriod tumour (the ovary was distorted by the torsion ... but intact) which is caused by endometriosis. ... I've never had any symptoms as far as I know and never had problems with periods. Anyhow that kind of tumour is oestrogen triggered so I suppose if there any bits of stray tissue about they may be triggered by hrt.

    It's comforting to know you are feeling 'all right' at 3 weeks post op. I really do wish you all the best. You have been so brave.

  • Ah, I didn't realise it was an oestrogen fuelled tumour - that's a pain.

    Until I speak to my surgeon next week and get the feedback from the histology, I don't know whether mine is (the mass wasn't biopsied before chemo - they took a sample of the ascites and identified cancer cells within it).

  • All the best for your appointment next week. This must be a difficult week for you. Kate x

  • Hey Donut!

    I was pre menopausal when I had my surgery. I had myself worked into a proper state about menopause and as others have said I was more stressed about that that I was about the surgery!

    I had my surgery in November 2015 and apart from the odd hot flush that really are manageable the anticipation was far worse than the reality! I can't take HRT so I was facing the prospect of dealing with it on my own! Everyone is different so I am not saying that this will be the way that you will experience it but I just wanted you to know that sometimes at least the reality of menopause is manageable!

    Good luck with your decision making its not an easy process so I feel for you!

    Take care

    Dx

  • Thank you. It is good to hear symptoms of a surgical menopause aren't always that bad. I too am more worried about the hormonal effects of the op than there being more tumours. Not sure if that is because I refuse to believe I had /have cancer and I need to just accept this is a blow that life has dealt me and get on with it. Very humbled by all you brave ladies. Kx

  • I had surgical menopause too, my periods were regular, and I have no history of any cancers in my family. So I was expecting menopause hell. I had really bad hot flushes at night and was a bit ratty on and off, however it only lasted about three months, so quite hard to predict. Although I couldn't have HRT because of the risk of it being hormone related my Macmillan nurse suggested red clover, but in the end I didn't need it.

    LA

  • Thank you. That's really comforting. Maybe it won't be too bad ...

  • My blood test (CLA 125 if that's the one you mean?) was only reading 30 - within the normal range of 0 to 35- when I was diagnosed with clear cell ovarian cancer in March this year 8 days after my total ,abdominal hysterectomy (TAHBSO) removal of Omentum and surprise appndictomy. I understand you are having second thoughts but the only thing that can confirm cig you have a cancer is the Pathology report or visible evidence, I would not want to gamble with my health and body.

    Take care,

    Clare x

  • Thank you Clare. Kx

  • I don't know how to advise regarding the enforced menopause as I am post-menopausal. I agree with with what Kathy has said but would add it may be wiser not to be misled because you feeling well. I felt well all the time going through two months of diagnosis. As far as I was concerned, I felt there was nothing wrong with me.

    Does your medical team recommend chemo after the operation or is that something they will decide later?

  • I do feel as if nothing is wrong with me ... I suppose that's why ovarian cancer goes undetected. At this stage they are not advising any chemo. I presume that will depend on what/if they find anything. I am starting to come to terms with it all I think. I was very fortunate that the ovary twisted otherwise I would have had no clue anything was happening. Thanks for your reply. Kate x

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