more problems!!

I wrote a while ago to tell you about my rare tumour, aggressive angiomyxoma. I am on tamoxifen for this. At my last MRI 2 weeks ago it was discovered that i have ovarian cysts, before they could arrange a trans vaginal scan i had collapsed with pain and was admitted as an emergency. I got my scan and have apparantly haemorrhaged into a 12cm multiloculated cyst in my ovaries, he was a little reluctant to committ himself to a proper description of this and has arranged for me to have an oophorectomy soon. I have been doing my research and realise that this type of cyst is a little more likely to be malignant. Has anyone had experience of these cysts?
  • Oh dear, you've had a rough time! i havent any experience of maglinant cysts, my friend recently had one on her ovary which turned out benign. When they operate they will have a better idea of what it is by just seeing it. i really hope it is a good result for you, think you are due some good luck xxxx
  • Hi Neety

    I had an 18cm multiloculated cyst (borderline malignancy) about 12 years ago. I too had an oophorectomy and usual follow up for 5 years and was absolutely fine with no further problems. So try not to worry too much (easy for me to say!). Recovery after the op, by the way, wasn't too bad. I think I was home after 6 days and more or less back to normal routine around 4 weeks later. They kept a good watch on the other ovary, which incidentally did have a few cysts over the years, but everything was OK.

    Hope everything works out well for you. You've had such bad luck recently and deserve some good news for once.

  • Oh thanks guys for your support, i still feel rough, nausea and soreness, am a bit concerned about it haemmorhaging again before my surgery but we will see!
  • Was admitted to hospital again on sunday, am having my ovaries removed 2 weeks on monday now. Have ascites too so look pregnant at moment!!
  • well 2 years later and i am still dealing with this rare tumour, the treatments are worse than the tumour.  I had my ovaries removed due to the cysts and was a mess inside where they had ruptured and haemorrhaged.  7 weeks post op i became floored with depression, suddenly, took a big overdose and ended up on anti depressants.  The pshyc doctor wanted to admit me but i agreed to have the crisis team out every day in the end.  Am ok from that point of view now, had to go back on the pills after coming off them as i started zoladex once the tumour grew back last nov, this appeared to be shrinking it again but now it's grown again so am continuing zoladex until we have further MRI in november. This tumour has metastasized in two women so far so we have to be careful with reccurences, only 140ish cases known worldwide so far, have found a few in this country tho so do have chats with others with it.  surgery is a very last resort for me because my docs at the marsden don't know if they can get at it (levator ani muscle this time) and if they do then damage may be caused in pelvic floor and bladder/bowel etc, not a nice thought

  • Hi Neety

    I too have had an aggressive angiomyxoma back in 2002 where I had extensive surgery to remove a large mass, then in 2012 had further surgery to remove a benign ovarian cyst, decided to have a oophorectomy as suggested due to previous history. My wonderful consultant has now retired and I am in the process of trying to research who I can see as something is wrong and I need another referral.  I was told that these tumours can come back up to 25 years later. Hoping it is not the case.

    Did you have surgery to remove the tumour or did you continue with tamoxifen.

    hope you are well now