Confused

When I had a meeting with my consultant he told me I would need a hysterectomy as they wouldn't be able to confirm wether or not I had ovarian cancer until they took it all out and did tests on the ovaries, he sent me for a ct scan to see if there had been any spread to other organs. At my results meeting for scan it was with one of the doctors assistants, she told me my scan results were clear, so I had 2 choices, to have the operation or to stay as I am and just go for 6 monthly check ups. What should I do? I'm worried because the consultant was very clear he wanted to do the op in my first meeting and the assistant didn't think it was nessasary??? Please help 😢

12 Replies

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  • I was told I had a 30% chance of having cancer, had to have a hysterectomy as I was over 50 . Surgery done by consultant oncoogist gynaecologist so all bases covered.

    I Was diagnosed with clear cell ovarian cancer after surgery, unless it's obvious or its wide spread you won't be diagnosed or receive an all clear until surgery or the full pathology report comes through.

    I'd listen to your consultant and ask to speak with him or her again to clarify and see if their position is still the same. Ring them tomorrow

    Take care

    Clare

  • Thank you Hun, I think my consultant was concerned also because of the history of cancer in my family, my mum died at 46, my sister had breast cancer at 35, I'm 45. X

  • I agree with Clare,I would Definately speak to your consultant to get a clearer picture of what is going on.

    I personally am an advocate of surgery and chemo (if needed).This may not be your case,but, I would listen and get the advice of your consultant,not the assistant and take an adjudged decision for what is best for you to lead a normal life,

    Let us know how you get on,

    Carole xx

  • Thank you Carole, I'll give my consultant a ring. I should've asked more questions in the results meeting but I was a bit shocked and it's been playing on my mind every since X

  • Oh we have all been there,maybe write down your questions, or take someone with you as back up,it's important you feel comfortable and get your mind put at rest,it's always a shock,but you will get over that and move forward,we all do,

    Let us know how you get on,we are all here for you

    Carole xx

  • Scans cannot detect microscopic disease. That is why the term "no evidence of disease" is used. A biopsy determines whether cells are malignant. Do not wait for 6 months. Get this taken care of now.

  • Hi NikNak,

    Im very glad you posted here and that i spotted your post.

    This is exactly what happened to me. However , i was not prepared to have a hysterectomy without first having biopsies and cysts tested for cancer. So i took a stage by stage approach.

    After being told by the first hospital that i had no other options apart from a full hysterectomy- I panicked and sought a second opinion at another hospital (that had a better reputation for cancer treatment) and was told by the team there , that tests and biopsies were available before making any decisions about having a hysterectomy. This is what i chose to do in the end.

    I had already had the the cysts removed by the time i had sought the second opinion, so i knew that it was cancer , and the ascites was also positive.

    Hospital no. 1 gave it a medium grade and tested the ascites as positive (for cancer cells)

    Hospital no. 2 re-tested it, and downgraded the tumour in the cyst to low grade and tested the ascites as negative.

    This shows the difference between laboratories too.

    I then chose to have the second operation with the hospital no. 2 , as they gave me more options.

    I chose a stage by stage approach. I had one ovary, fallopian tube , omentum removed and some lymph nodes were sampled. Uterus washings were also done.

    This was then sent away to be tested on the understanding that if there was any cancer found outside of the ovary which had the cancer , then i would likely need more surgery (possibly even a hysterectomy) but i was happy to go stage by stage before having a full hysterectomy.

    The tests came back as all clear for all. so the cancer was actually removed with the first operation which took out only the cyst/tumour.

    So i was glad that i chose not to have the radical surgery.

    Every woman is different. Some may have preferred to eliminate all risk and would have gone for the hysterectomy immediately. If i had been older , i would 100% have had the hysterectomy. And at some stage I will need to have it done later in life.

    I would recommend first getting the results from the cytology which is performed after the cystectomy.

    Also , its very important to find out which type of cancer cell you have. As some are naturally more aggressive and perhaps a hysterectomy would be the most appropriate treatment for those.

    I would say the important lesson I learned is that oncologists , depending on which hospital you go to, and their experience, do have varied opinions and its worth getting a second opinion always.

    good luck and let me know if i can help with any more questions

  • Hi Nik-

    I am so sorry you do not have any clear answer here. If you are not planning on having anymore children then I would go ahead and have the hysterectomy. If you do have cancer a better chance of catching it early and better success with cure, if not, then you won't be constantly worrying about it.

    For positive identification they need to do full pathology. hope this helps. you are in my prayers.

    XxCarol

  • Thank you carol. No I'm not having any more children, I was left infertile after treatment for abnormal cervical cancer cells when I was 20, so no chance of that lol. I do think I should go ahead with the hysterectomy as I know I would be constantly worrying otherwise. It's just annoying that I got conflicting answers from the team. X

  • I am relieved for you that you have made a decision. Don't second guess it now that you have made it. Better to have surgery now even if it turns out to have been unnecessary than later after something worse develops. You would have a hard time regretting what could have been. I hope you get only good news, but be at peace knowing you are being as aggressive as possible as a safety measure. Lots of good wishes to you!

    Anne 🌸🌺🌼

  • Good Morning nik7nak,

    I am not sure if a Consultant is a gyn/onc or a Doctor? but here in the states we have too many horror stories of physicians assistants not taking our concerns seriously. Have they run a CA125 test? So Please meet with the consultant to find out why there is differing thoughts on the results.

  • Good morning,

    I was diagnosed on 13th January and today I am now 9 days post op. Full hysterectomy, omentum, lymphs all taken. Tumour in my Fallopian tube. I couldn't have children either, and was by apprehensive about the op and apart from " toilet" issues I'm so pleased that step is over..... Do you have a specialist nurse you can talk to? I'd ask to see the first dr again with your nurse there...

    Good luck getting clear answers

    🌻🌻🌻🌻

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