Hello all - new and would welcome advice

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Hi everyone,  I will try to be brief!  Had post menopausal bleeding which put on me on 2 week referral pathway.  Gynacologist found 5.5cm fibroid then I had MRI followed by hysteroscopy and biopsy under general.  Waited weeks but have now been told biopsy of uterus cavity was negative but mri has shown multiple fibroids in wall of uterus and the biggest one is atypical.  Consultant offered hysterectomy but when I queried what the concern was she said it's rare but the bigger 'fibroid' could be a sarcoma.  I asked my options and she said only hysterectomy or wait 4 months and have repeat mri.  This seemed a long time so I asked if we could repeat mri after 2 months not 4 which she agreed to.  I don't want a hysterectomy if not necessary but she wasn't really offering any advice either way.  She also suggested MDT meeting until I pointed out this had been done at which point she read my notes and said 'oh yes it had and I ordered it'!  Doesn't fill me with confidence.  Do you think i've done the right thing waiting for MRI?  Thank you in advance, Sand xx

  • Hello SC and welcome to the group. I am also post menopausal and had spotting, and a hysteroscopy. During the hysteroscopy they took samples of polyps that had been seen on an ultrasound. My biopsy came back positive, and I have a sarcoma, and after establishing with a CT and MRI that it hasn’t spread, I will be having a hysterectomy as soon as.
    In your case I don’t understand why they would tell you it ‘could be’ a sarcoma - what does that mean? Why can’t they give you a definite answer? They appear not to have done a biopsy of the fibroid, and yet you have been offered a hysterectomy 

    I think, if I was in your situation, first of all I would want a biopsy of that atypical fibroid, because ‘could be’ is just too vague -and too worrying for you - you need to know, not just wait a couple of months for another MRI

    Then both you and your doctors would be in a better place to make decisions about what your next move should be, best wishes, Julia x

  • Fridgelicker, I’m obviously not medical, but as the “fibroid” is in the wall of the uterus then taking a biopsy may not be straightforward because I imagine they can’t get to it with a hysteroscopy.

  • Hi MM, you could be right, I’m not a doctor either Joy  My uterus is squashed up a corner, with a dodgy polyp on the wall at the top and they got it - but every case is different. 

  • Fridgelicker, a polyp grows out from the wall, kind of like a skin tag. Fibroids can be in different places and if totally intramural I think it’s out of reach from a hysteroscopy.

  • Hi Julia, thank you for your reply.  I'm so sorry to hear about your diagnosis, positive news that it hasn't spread though.   Re the biopsy, she said that due to the type of sarcoma that it might be( i've forgotten the long name lol) then they would only do a full abdominal hysterectomy or a repeat mri to check if it's grown/ changed. No other options available as it's in the wall / growing out of the wall and they can't risk spreading cancerous cells so no biopsy or embolisation etc possible.  I am at the doctors this week to have the Marina coil they put in checked so will see if they csn see my notes xx