Dermoid cyst!

Hi recently been diagnosed with 8cm dermoid cyst. Recently in A & E with severe right sided abdo pain nausea and back pain. I could hardly walk. They said it may be torsion but not confirmed on more scans etc. given morphine for pain. Sent home awaiting open surgery god knows when. My concern is what if it's not a dermoid and something more serious. My consultant asked me in hospital what had I been told I said a dermoid cyst was found he said well that's what it looks like on ct! This makes me think is it something else. Should I be pushing for more tests I'm worried.

10 Replies

  • No you should be pushing for surgery NOW. I had same thing and they did not think it was Cancer! Well it was. So push like made because the sooner the surgery the better. My thoughts and prayers are with you. If you want to speak to me about it please do.

  • Hi thanks for replying. so you had a dermoid too? What happened did you find out after it was removed? Not sure where I go from here.

  • No, mine was adenosarcoma but the point is they did not think it was Cancer. So the only thing you can do is be a pain and push for surgery asap. Whatever it is you want it out. That is when they/you will know for sure what it is.

  • Hi Hilary, I'm conscious that as my experience is similar to Lauren's this may cause you more anxiety- of course due to the nature of this site, the great majority of us have had an Ovarian Cancer diagnosis! I don't know if there is a site where women who were told they had a Dermoid, had an op which confirmed it and had it safely removed go!!

    However, I do believe in trusting your instincts. I was told I had a Dermoid based on a scan and that it should be removed as a non priority. Due to our circumstances at the time (and a niggling concern), I had a second private consultation with the consultant (having seen his registrar), then pushed for a repeat scan. The second scan said, not Dermoid but not anything sinister. Again I was advised no concern but had a very very strong feeling that I wanted it out. I can't explain it! But yes when the 'cyst' was removed it proved cancerous.

    I am sure that we here are the minority of cases which do not turn out as expected. But it does happen.

    In terms of what tests, you could see your GP and they may do a CA125 / 19 if these haven't already been done. Again, these can give false negatives as well as positives but are a useful tool. My GP was ahead of the curve and had ordered them before I saw the registrar- and they were both normal.

    Additionally, there is an excellent nurse led helpline run by Ovacome- they will be open tomorrow and are really supportive and very knowledgeable and hopefully will be best able to advise on the specifics of your situation. Do please think about calling them!

    I've hesitated to post, and certainly don't want to add to the concern that you already have, but you asked the question and there is a similarity in the beginning of our experience though hopefully yours will prove to be just as your consultant has advised! Best wishes, Sx

  • Thanks very much for reply and advice. I think you have to trust your instincts like you did. I will be contacting my Gp . Thanks again x

  • I agree, push for surgery now and a CA125 blood test. Mine was supposed to be a dermoid but turned out to be borderline cancer and then full blown cancer.

    I waited several months for an op and I regret that.

    GEt your GP to do the blood test

    Nicola x

  • Hi they done the tumour markers at the hospital they said they were normal. Do I assume this is ok or not as I have read they can be normal in people with malignancies. X

  • My CA125 was always under 35 but I had a Mucinous tumour and this is often true for them. X

  • Hi there - the result should be under 35. Mine was around 50 and the doctors said it was normal! (which clearly it wasn't). I wouldn't assume it is OK, although there may not be much you can do except push for the operation by saying how worried you are etc etc. Don't want to alarm you but just so much better to have the op asap. HAVING SAID THAT you have had a CT scan which I didn't have - mine was all done on transvaginal scan. A CT is much more accurate so what your consultant says could be correct. I hope they will give you a date soon. Nicola

  • Thanks for all your responses I'm not going to settle until I discuss all my concerns with drs etc and until this thing is taken out. I will keep you posted x

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