Here we go again!

Previously had a borderline mucinous tumor (massive - removed March 2010) and benign mucinous cyst (Nov 2011) another cyst which disappeared/ burst Feb 2012. Now ultrasound shows another 7cm cyst which is not entirely simple! Currently have a blood pressure of 200/125. started medication which did nothing, doubled it and get reviewed at the end of the week. I am 33 and also have a bmi of 32 (I know I am not helping myself with such a high BMI) but really, a BP that high with no identifiable cause! What is going on!!! Normal ECG, normal cholestrol, normal fasting glucose - just a raised ESR which I have had for the past 2 years. No CA125 but not pushed for it as I don't think mucinous things secrete it, therefore an expensive test with no significance.

Planning to have ovary removed and ?womb 'electively'. Have an appointment with consultant in Nov. on zolodex and HRT. I have been reading about PMP and slightly worried that I may have it? although I have never had free fluid in tummy. I have really bad reflux resistant to gavison!

Had my large cyst drained and removed laproscopically in two parts which has always made me really anxious, partly because I consented to a semi open op due to the fact it couldn't be done. Surgeon told me a medical student suggested cutting it up, rationally I know that the surgeon was an expert and knew what he was doing, but then I have a fleeting nagging doubt!

I know that there are lots of people out there with needs much greater than mine, more maligant and life threating. I am just in pain and at a loss of what to do! Sorry to moan on here when lots of you are going through a lot worse than I am, but appart from getting a grip any ideas?

6 Replies

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  • Hi... I don't think the ca125 test is very expensive.... and maybe you should ask for this to be done..it might eliminate things...and highlight other things... I wouldn't think that you would get it done routinely because of your age... just a thought best wishes love x G x

  • It sounds as if your case needs a review. Is your specialist nurse or GP amenable? If you give the helpline a ring on 08453710554, mon to Fri 10 - 5. They are so helpful and should be able to advise you about your options. Good luck

    Love Wendy xx

  • Hi there

    So sorry that you are going through all of this again.

    As Wendy says , you definitely need a review and a treatment plan if you are unsure about what's happening.

    I also had Zoladex to shrink massive fibroids and it certainly reduced them a bit.

    The only way the doctors will know with certainty is by opening you up and biopsying what they find. A few weeks probably won't make any difference. But if your condition gets any worse go straight to A and E.

    My BP was very high in hospital after my second operation, I was told it was the pain and anxiety. Also don't even think about your BMI , I had to struggle to get mine above 20 aftre the operation , and wasn't very big beforehand , but still had a big tumour.

    Take care

    Love

    Charlie xxx

  • Hi, my case is similair to your. I grew a football sized mucinous cyst in 2010 aged 32 during a pregnancy. The cyst ruptured before removal and spilt mucin throughout my adpbdominal cavity. The lab work came back as borderline so a few months later I had a total hysterectomy. Fast forward 14 months and I reoccurred with tumors and deposits all throughout my adbominal cavity and on the outside of my liver and spleen, and now invasive disease not borderline. I had two rounds of chemo that didn't work (mucinous is know to not usually respond well) then in July this year I just had the surgery done in Basingstoke that is usually done for PMP- The sugar baker technique which you have probably read about. They managed to get all the disease out and wash me out with chemo but it was very difficult and took 17 hours in theatre. It's unclear if I have PMP or not as I had my appendix removed aged 16 and my pathology always comes back as ovarain origin. Some doctors say it can very rarely start from the ovary and some not.

    So do you have your appendix still or not? PMP is very commonly misdiagnosised as ovarian cancer. Also are you being seen by a oncology gynaecologist? This was my main mistake letting a regular gyn (lthough he did claim to have a "special interest in oncology" ) do the original surgery and hysterectomy. He failed to do a lot of things he should of done, I found out later, like remove my momentum for a start!

    My main advice would be get yourself to your nearest specialist cancer hospital and see an expert. Ask him/her if they have considered PMP and make sure they open you up to have good look around and take any cysts out INTACT. If it's anything other than benign having them cut up or rupture can cause seeding of cancer cells everywhere. They really can't tell by looking what they are dealing with. Getting the pathology right with borderline is very tricky, 3 different labs have now looked at my original slides and still can't agree if it was borderline or invasive...it' rare for borderline to come back so quickly and invasively as mine did so they suspect it might not have been borderline after all. You can ask for a second opinion on your pathology slides if your worried about this.

    If you don't know where to go for a second opinion then I would recommend Professor Gore at the Royal Marsden in London. He is one of the top people in the country dealing with ovarian cancer and mucinous diseas in particular.

    Hope that helps and I haven't frightened you or bombarded you with to much information!

    Claire

  • Sorry forgot to check for spelling! My computer changed omentum into momentum for me!

  • Hi

    No wonder your blood pressure is high with all this going on. Think I would definitely make a lot of noise and get another consultant involved- there is something not right at all.

    The very best of luck with it

    Love and prayers

    Anne

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