So confused and anxious

After over a year of doctors visits for weight loss I'm now down to 7st and diarrhoea, pelvic pain and severe fatigue, I finally had CA125 test, came back at 117, scan found heterogeneous solid mass on left ovary quite small, consultant gut feeling Endo burn out. I had Endo years ago had hysterectomy 16 years ago left ovaries no problems since. I'm 45 now and have been through menopause, this is my latest:

So the latest update, after the visit with Gynae Onc on urgent referral (which didn't go well) was very rushed and not able to ask questions or felt listened to at all, I had an TVUS where a mass had been spotted, but the oncologist has a gut feeling it is Burned out Endometriosis ( I had hysterectomy 16 years ago and left ovaries, no problems since), CA125 at that stage was 117, I asked for a CT but was refused and told I didn't need and would be put on the list (4-6 Weeks) for a Bilateral Salpingo Oopherectomy. However the following week they rang with me a cancellation for the Monday following (23rd January), so due to go in then. In the mean time I sought a second opinion from a private consultant and paid £1500 for a CT Scan, which I'm somewhat upset about. He thought it may be an irritated bowel that could also be causing symptoms along with the issue on the Ovary. The CT came back with wall thickening on the Bowel and small cyst on liver, nothing else really to report. He advised having another CA125 test (making sure it's the same lab) and said then you will know for sure, if it goes down. So I did, first one was on 28th Dec, second one 18th January only unfortunately it has now gone up to 125. Now I'm worried and don't know what to think, surely if it was Endo burnout left over on my ovary it would not increase. The Cyst/mass/tumour (this is what they have all referred to it as) is still on my ovary. I'm due to have the BSO on Monday and think that is still the right thing to do, but somewhat concerned with the symptoms I've been having and that again I'm not being listened too. I'm not sure it's bowel issue or ovary issue that has affected the bowel, as the symptoms seem more relevant. I'm just confused. Hoping to get an answer soon.

10 Replies

  • Hi Nat, gosh it sounds like you've got an awful lot on your plate at the moment. I'm not sure i am at all qualified to give you any advice but it does sound like you're in a pickle and you don't feel you've had anyone listen to you. I know you're due to have surgery on Monday (really, best of luck for that)...perhaps you can run through these concerns when you see your surgeon before the op (which they should do) and mention that you didn't feel you had any chance to discuss any of your concerns or questions at your last appointment. You could perhaps also mention you've paid to have a private CT and discuss the results with your surgeon too. In the meantime, I'm sending you a jolly big virtual ((hug)). Jemima xx

  • Agree with Jemima,provide them with all the information you have to hand and spend this time now writing down all the questions you need answers to.Also, if you have someone to go with you, take them as back up, since it is a lot for you to take in,

    Lots of love and best wishes for Monday,

    Carole xx

  • I believe the ladies are right turn up at the hospital with the results you have so far and the result from the private ct, It wont help a lot as many consultants will tell you the possibilities but they never know until they go in and do biopsies. I think your best bet is to have some one of your family come in and speak to your consultant after the surgery as you could be sleepy. No doubt he will tell you anyhow but I cannot remember anything said to me post op by mine, so it is good to have a second pair of ears. I wish you well for the procedure and hope it will go well.

  • it must be very worrying for you waiting all this time. I can't better the advice you've been given. Good luck for Monday!

  • You are doing all the right things Nats45. I am with the others, inform your surgeon and see what the results of your op are. If your CA125 is still high or if you are worried afterwards maybe go back to GP and ask to be referred to a specialist centre like the Royal Marsden. Well done for pushing this....your health is important and they need to listen to you properly...good luck with your op!!! xxx

  • I can't add anything more to what the lovely ladies have said other than to wish you good luck with your op and sending big hugs and lots of love ❤xx Jane

  • Can I just say thanks again for the support, this forum and you ladies are so helpful it's really touching and makes a massive difference. So thanks! Will let you know how tomorrow goes staying positive and ready to take it on, as is what it is, but sooner I know the better so can deal with it! x

  • Ditto what was said above. If you have someone to talk to the surgeon after the op then have them record on their smartphone. My son did that and I use it all the time now as I don't remember all the details. Been a wonderful tool. Sending lots of hugs and well wishes. Keep us posted.

    Carol X

  • Sounds like you're going through the same as my partner Tricia, she was diag with PPC stage 3 about 3 years ago, first line seemed to work but ascites showed that it had come back 6 months ago. After 6 months Carbo, she is down to under 7 stone, not able to eat and is being hydrated and fed via a drip. We have asked for a second opinion as the onc surgeon says nothing more to be done. You can always ask for a second opinion, but Tricia is currently too weak to travel. I am hoping that she can get her strength back enough to travel to London to the Royal Marsden. If you are not happy, insist on a second opinion.

    best wishes to you


  • Just to update had surgery today, it went okay, in a bit of pain but glad to have behind me now. surgeon did not even speak to me post surgery, they had to get on call Gynae to read my notes and then try and explain how it went who wasn't even in the surgery . It looks like all went okay according to notes and they sent off to histology and peritoneal washings said that would take a couple of weeks but follow up appointment made in 6 weeks time. Again waiting, again no real answers to my diagnosis. My white blood count was highlighted as low along with my high CA125. Didn't say that they'd seen Endo. So I'm not sure where I'm at yet again. Hopefully One day soon I will.

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