Very worried and confused

Hi all

I hope I am in the correct part of the forum. I am, at present going through the very worrying process of knowing if I have OC. The signs are that I have. I went for pelvic US and a 3 cm cyst on rt ovary was found incidentally. I was then referred to gynae within the two week standard. I had CA 125 which came back at 8.6, very low and well within normal. I felt reassured after this. I then went to the gynae and she aid the cyst was complex with solid component and blood supply which I now know is very worrying. I have been referred for a CT scan and my case is being discussed today by a MDT. The gynae has already said that the ovaries will have to be removed and this is scheduled for the end of June and due to tumour size ( she called it a tumour) can be done laparoscopically. I know that many high risk masses turn out to be benign and I would be grateful to hear from anyone in a similar position.

I also have a spinal cord tumour ( benign) which is incredibly rare. I was scheduled for spinal neurosurgery in July, which now the ovary issue has arisen will need to be put back to August or September .

I have so many back symptoms and take strong pain meds that I am worried that some of my back pain may be due to ovarian cyst. I have had pelvic pressure, bloating and spend a lot of time going to the loo! These are all symptoms of a spinal tumour too.

I don't know whether I am coming or going. I don't expect answers as the medical fraternity will give me those. Just need to get this off my chest

S x

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10 Replies

  • Dear S,

    What an awful time you are having lets hope that the operation you get soon will solve your other problems too (i.e. your spine) I am glad at least that you have found this forum which is a very good support site.

    Best wishes love x G x

  • Thanks Gwyn

    I will keep posting as I know more.

    S xx

  • Glad that you found the forum and there is a lot of support here for you. The positive side is that you have been referred and that is good to hear. Keep us posted with how it goes and I wish you well over the summer.

    Love Wendy x

  • So sorry to hear you're having all this worry, with what sounds like complex problems. Have you had a look on our parent site ? It's full of info and the BEAT symptom tracker is very good for recording, tracking and printing our a record of your symptoms. There are also lots of fact sheets, listed under 'resources'. Also a helpline number, should you need to talk to someone who is a qualified nurse. I hope it helps to put your mind at rest. Even if the mass does turn out to be OC, if caught early, the outlook is good. I hope it isn't OC, but if it is, it's best to get it sorted out as soon as poss.

    All the best

    Love Wendy xx

  • Thank you for all of your words of support and encouragement. Yes, it is good that whatever it is has been found and is contained and removable. It is a lot to take on board, but you have all been through this so know exactly how worrying it is.

    I will keep you all posted as I know more

    Sue x

  • Hi Leofwen,

    I'm so glad you found this forum, it is great place to discuss concerns and so supportive - as is Ovacome. As Wendy has said, Ovacome has a helpline staffed by qualified nurses, so it might help to call.

    I know it's a really scary time when you receive a possible diagnosis of OC, especially when you already have a lot on your plate with the scheduled spinal surgery (no small thing in itself!) but it is so good that the ovarian cyst/tumour has been found - they don't hang around with this kind of thing, I had surgery within 3 and a half weeks of my initial ultrasound scan. Wishing you all the very best, love Libby xx

  • Thanks libbyjane

    The good thing is that they are not hanging around as surgery is scheduled for 30 th June which will be 4 weeks from seeing gynae last week. Only had US three weeks ago.

    Have CT scan on the 11 th

    Can't complain that things are moving slowly! Lol

    Did you get referred to MDT ; do they contact you after they meet? Not sure what happens as presumably as the decision to remove has been made there is not much more they can do at this stage. The CT scan will assist with surgery options.

    S xx

  • Hi S. It is normal procedure for the results of scans etc to be discussed by a multi disciplinary team, which includes the gynae surgeons, radiologists, oncologists and lab consultant. In my case, the surgeon telephoned me following the MDT. He would not say I had cancer (I asked him) but he wouldn't say I hadn't, he just said "its all very worrying". As a NHS medical secretary for an orthopaedic oncologist. I knew myself with this answer. He said, we need to see what surgery reveals. Staging and grading of tumours is performed in the lab. I wish you the very best of luck. Its no use saying try not to worry, as we all know that that's exactly what you are doing. Let us know how you get on. Ann xo

  • I know that at this point lots of things seem confusing but in a very short time we become profesionals on OC. You need to trust your oncologist, have pacience and lots of faith...

  • Thank you lovely ladies

    I am remaining positive and my worry levels are getting under control as I can't influence what might be there now. Just have to deal with what's in front of me in baby steps.

    All of your input has been comforting and I will let you know how I get on


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