I have a mass on ovary and ca125 of over 300 my gyne don't seem worried as I have a history of endometriosis . What should I do ?

I have been having increasing gyne problems for almost a year pelvic pain pressure feeling and looking like I was pregnant . Gp didn't take much notice as have fibroids and endo . Eventually went private and got ultra sound which showed cyst on ovary about 6. Cm and ca125 300 then few months later 250 . Was told not to panic as endo /. Fibroids can raise levels . So just ti watch things and have hysterectomy . I don't want hysterectomy but am very concerned that I would be putting myself at risk not to have one . The. Gen gyne team I see at UCH londin have been hopeless made fun of me. For going private and getting ca125 test . Despite my uterous now being the the suze of a 30 week pregnancy .My second opinion is a consultant gyne/onc at Barts he says I should be operated on my him and not with gen gyne . To do that quickly it would mean going private I do have insurance but feel nervous leaving NHS when cancer is involved. So am I just panicking ? Should I have a hysterectomy ? Does it matter if it's done by gyne oncologist or not ? Surgery is planned for next week and I am terrified and full of doubt and questions . Welcome any advice .

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  • The treatment you've had from the NHS sounds absolutely appalling and I can imagine how worried you must be feeling. The Barts surgeon is right in saying surgery should be done by someone with both gynae and Onc specialisms.

    Hopefully, your worst fears won't be borne out but it seems to me that you need more of an answer than just wait and see. There are NICE guidelines on how medics should respond to possible ovarian cancer. I don't have the link handy but will try to find it. They may give you a better idea of what to expect/demand.

    Wishing you all the best.

    Linda

  • Click on the Tags button and look for NICE. You'll find Wendydee has posted a link to the guidelines.

    L

  • You definitely need to be treated by a gynae oncologist and even on the NHS you should be waiting that long for an op. Is there a MacMillan nurse at the hospital you usually go to so you can discuss options and get to act as an advocate

  • Hi there. Sorry you find yourself in this unsettling position. I too had lots of gynae problems which included endometriosis and large fibroids. Your doctor is right in saying that the CA125 measure doesn't mean that you have cancer necessarily and other inflammatory conditions can cause the rise. A person can also have ovarian or peritoneal cancer when the reading is within the normal range and not elevated at all.. which is the case with me. Being concerned about having an ovarian cyst is quite normal I should think. I'd feel the same. I wonder when you would be having a hysterectomy if you did agree? And also, you don't give your reasons for not wanting a hysterectomy. If it is because of the invasiveness of the surgery, then some women are candidates for less difficult procedures to remove or shrink the fibroids. Obviously, the subject of whether or not to have a hysterectomy or not is too complex to go into here, but one solution to your immediate difficulty would be to have a laparoscopy with a view to your doctor looking at the state of the uterus, abdominal cavity and the cyst at the same time. If anything untoward is found, then you could have time to think about things and be referred to a gynae oncologist/specialist surgeon. It's a worry I know, but most cysts are not cancerous at all. At difficult times like you're going through, it's sometimes very hard to speak to doctors as lovely as most of them are as I've found in my experience. One thing you might do is to go back to your GP and explain your fears. Whether your consultant thinks they're small or not, they are obviously very real to you. The other thing I would do at the same time, is to send a mail to Ovacome. They have been very helpful to me. The people there have lots of experience. There is a phone number on this site too. Maybe you could get suggestions from them as to getting yourself an advocate who can speak for you. I very much wish you well... :)

  • Treatment in the private sector is if anything better than the NHS. You can always go back to the NHS. Beware of your fibroids, alas the presence of fibroids can mask other pelvic growths such as ovarian cancer. I would have the surgery done by a gyn ocn. It's very important to have a gyn onc if there is any reason at all to suspect cancer. Surgery is not great, but it's a lot better than the alternative.

  • Hi!

    I would say, get it done as soon as you can and get an gynae/onc specialist to do the op if you can. I had endometriosis, fibroids, swelling etc etc (check out my story on my profile) and it took nearly 3 years to get an op. I was lucky and it's been OK for nerly 10 years now. I would say get it dome whichever way is the fastest, so long as you have a gynae oncologist operating. Mine did a wonderful job of cutting out all the cancer but he was very experienced in these things. Mine was done on the NHS and I couldn't have asked for better.

    Ring one of the helpline nurses for a chat to see whether NHS/private decision will make any difference, and check out the NICE guidelines. Knowledge is power! But ....you've already realised that by coming on here and asking your question

    Good Luck

    Love Wendy xx

  • Hi

    I had my surgery done privately and had exactly the same surgeon gynae/onc and in the same hospital as my surgeon didn't like racing round to private hospitals so the actual treatment was the same, the only difference for me was that I had a private room. As previous post mentioned you can always go back to NHS and then back to private if you want it is up to you. Good luck with everything.

    Tess x

  • Do feel free to give us a ring to discuss this further 08453710554. I am really sorry to hear of the way you have been treated but hope that it can be sorted out quickly. If there is any chance that it might be cancer you should be operated on by a specialist gyunaecological oncologist and not just an ordinary gynaecologist

    Best Wishes

    Ruth

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