Update on my ongoing saga.. first think endometria.. 2 months later now maybe a Dermoid!! - but not linked to intermenstrual bleeding??

Update ladies!!- Been for scan today followed by appt with same consultant as previous. At first appt he told me he fully thought cyst would have disappeared within couple of months. Scan shows cyst still there and grown little bit (about 5mm). Previous report said ?endometria?heamagerric (spelling??) Now they have put ?dermtoid. Heard the radiologists talking about calcified areas within. Ok consultant then asking what would I like him to do?? !!! He feels my bleeding and the cysts are not connected but couldnt say for definite. Also no conclusion as to what cyst really is unless removed and look under microscope/. Ok.

The long and short of it is I was basically made to make decisions of what happens next and beause of the bleeding and because of the lack of explanation and the fact ca125 still double ( but yes fallen since 1st test) I have asked to have cyst removed and he will do a hysteroscopy?? at same time to have a look around.

Hello.. cyst not gone away, raised ca125, different opinion today of cyst to opinion 2 months ago I assume this means cyst looks different now, and pretty much 3 out of 4 weeks per months some level of bleeding...did I really have to make that decision or is this a new modern take on medicine?? let the patient decide.

Have I made the right decision? It is only through info from lovely ladies on this site and advice that I even have the knowledge I have.

Any similar experiences or thoughts would really help.

Should I have asked for another ca125 ( i meant to ask to confirm trend.). I have had 2 with results of 145 then 76. Not sure how long wait till op but obviously not being done as urgent.

Confused but feel little bit better as something being done.

Love

Sarah

6 Replies

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  • Hi Sarah

    I am sorry it is such a hard decision to make... But I think taking it out is the best thing.. you will then know for sure.. and hopefully no more worrying ... I am sending you my good wishes and love x G x :-)

  • Hi Sarah,

    If it was me, I would want to get the op and let the surgeons have a look to see what is going on. This may be indicated by your previous CA125 results, although they are not always strictly accurate.

    I had that decision nearly ten years ago now. If you do have a choice, ask to see a consultant Gyn/oncologist specialist. Mine cut out everything he could see that could be suspicious and ....so far, so good!

    It may also be a good idea to ring the Ovacome nurse helpline, they have so much experience. The number is 08453710554.

    Good luck, and let us know how things are going with you. Remember, early treatment gives you a much better chance.

    Thinking of you, I know it's not easy to opt for an operation, but it is not as bad as you think it will be and I'm sure you'll cope well.

    Love Wendy xx

  • Hi Sarah,

    I feel you must ask for the operation asap. The sooner any ovarian cyst is removed the better. At least youhave some symptoms - I didn't! It really would be best - ask the Ovacome nurses as suggested by Wendydee - I am sure they will agree! All best wishes with you and hope your prognosis is good!

  • Hi Sarah, for me, I would always go with the mantra of, if you can take it out- get it out! At least they can check and see what it is. I also think the doc should have given you the information you needed to make an informed decision and some time to make that decision.

    maybe you could ask to speak to the specialist nurse next time, but do ring ovacome for more info.

    Love

    Sue

  • Hi sarah,

    I agree with everyone else, get rid of the lot - even if its not cancer, getting rid will prevent it occurring.

    I asked over and over to have the op to prevent the big C.

    I was refussed over and over because they told me they wouldn`t take away healthy organs - then it was too late and I had cancer.

    At least now they have offered preventative surgery to my daughters once they have finished with their family.

    We all carry the faulty braca - they wouldn`t even test us before my cancer because I only had one member of family (my mother) who had it.

    I think all women should get rid of their reproduction organs once they are no longer needed, who needs pain and bleeding and ovarion cysts can be so nasty symptom wise even if they are of no danger to us.

    Having said that my brother lost his fight to colon cancer this year and he had no faulty genes, its a begger isn`t it?

    Anyway luvie , You are making the right decision in my opinion but maybe others may feel different, go with your first instincts and gut feelings, do what feels right for you and we will back you all the way.

    Take good care of yourself and good luck, will be thinking of you.

    Love T xxx

  • Cant thank everyone enough for their kind replies and advice. Will go ahead with op and hope that stops the bleeding (even though gp and consultant think the two arent linked). Good luck to everyone and I'll probably pop up here again when op done

    Love and hugs

    Sarahxxx

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