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consultants suspects fibroid may now be sarcoma

Posted , 7 users are following.

ali86305
ali86305

So, iv had (what I was told to be) a fibroid for 2.5yrs. In that time it has doubled in size - I have had blood tests, biopsy and mri scan. Bloods and biopsy were fine - they even removes some smaller fibroids at the same time. The problem is with the large one as it is growing in the top of the wall of my uterus - therefore they cannot get a biopsy from it. So, they are concerned that it may be a sarcoma. I have been advised to have a hysterectomy in the hope they can leave my ovaries. I'm kind of adjusted to that - but what I don't understand is if the fibroid is actually cancerous - can I really of had it for over 2.5 yrs and feel fine. I just would of thought it would of had the better of me by now. It's all a bit surreal - im 41 and getting married in 3 weeks. My hysterectomy is booked for one week after the wedding as they want to do it asap! 😣

1 like, 17 replies

17 Replies

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  • deanne2
    deanne2 ali86305

    Posted

    Hi Ali

    I'm not a doctor of course although I am a health professional, but I wouldn't have thought it could be a sarcoma. Surely there would be signs in your blood tests especially as you have had the fibroid for so long and as you say I think you would have other signs by now. What a worry though. I don't know why they say these things sometimes, it just seems an unecessary stress.

    Good Luck. Let us know how you get on.

    • ali86305
      ali86305 deanne2

      Posted

      Thank you for your reply. I asked about the bloods - he said sarcoma doesn't show in a tumor marker blood test. Also - he said you can feel fit an healthy and not know. I'm totally thrown by the whole thing - I guess I have to trust they are doing the right thing!
  • deanne2
    deanne2 ali86305

    Posted

    The odds are definitely in your favour though that all will be well especially as all the other fibroids have been benign. I will keep my fingers crossed for you.
  • Jessible
    Jessible ali86305

    Posted

    Hi Ali, what a difficult thing to deal with. I wonder why they think it is a sarcoma if your bloods and other fibroids have been clear. Was anything indicated on the MRI? I understood from my own consultant that malignant fibroids are actually very rare. I do hope all goes well for you and you have a wonderful wedding. Would be great to know how you get on.
    • ali86305
      ali86305 Jessible

      Posted

      Hi - the consultant was concerned with the mri image - it doesn't look smooth - and also the growth. Although I don't really understand that as it's not unusual for them to grow. Thanks for your reply x
  • Kaliana
    Kaliana ali86305

    Posted

    I had what I thought was a fibroid removed and it ended up being a sarcoma. I did not need a hysterectomy because it was a low grade. They can't test it for pathology until it's removed. I've been fine since it was removed 6 months ago.
  • sara80820
    sara80820 ali86305

    Posted

    hi ali

    so sorry about your diagnosis and the timing too - i would definately seek opinions before surgery - its been there for 2.5 years already and your health is not pressing i think you should have bloods redone, mri/ultra's rescanned and research well before this surgical step - bad to say but it favours the system to have patients opt for surgery although if sarcoma is what second and third opinions sugest then surgery is the best route - kaliana would you please give details what were the parameters that pointed to sarcoma in oyur case and what determined the diagnosis? it would certaily help keep us all informed and to be prepared

    • Kaliana
      Kaliana sara80820

      Posted

      When the pathology was run on it after it was removed they determined it was a high grade stromal sarcoma which is quite rare. They removed it with clean margins so I was very lucky.
    • sara80820
      sara80820 Kaliana

      Posted

      wow so glad for you may your well being continue - so it was in no way indicative of sarcoma before the surgery? scary because some of us decide to avoid surgery to see if menopuse makes it a symptomatic and that may well be a very bad choice then - is there no tests to determine sarcoma's then like blood etc?
    • Kaliana
      Kaliana sara80820

      Posted

      They thought it was just a fibroid. My bloodwork was fine except for slightly elevated liver enzymes. Even when it was removed they still said fibroid until it went to pathology. It was looked at by 4 pathologists to confirm high grade stromal sarcoma. I had all the symptoms of fibroid before surgery, nothing out if the norm. I don't believe beyond general blood work they do any special tests because what I had was incredibly rare. This is why when they come out pathology is done on them.
    • ali86305
      ali86305 Kaliana

      Posted

      Wow! You were so lucky!! Do you mind if I ask how long you had the growth ( or was aware of it at least))? When they did my mri they injected me with a dye ( begins with G) this shows up any blood vessels I believe. As my 'fibroid' has blood vessels he seems to think that is an indicator plus it's not a regular shape. I am so worried. Thank you for taking the time to respond on this forum.
    • Kaliana
      Kaliana ali86305

      Posted

      Hi Ali,

      I had weird periods and other symptoms for 6 months. It got so bad the last month I demaned an ultrasound. They then saw what they thought was a orange sized fibroid. I was scheduled for surgery 2 days later. Mine was perfectly round and it was attached to a stalk.

  • Kaliana
    Kaliana ali86305

    Posted

    Are you scheduled for surgery? Have you had a second opinion on a hysterectomy? I hope all turns out well for you!
    • ali86305
      ali86305 Kaliana

      Posted

      Hi. Yes - I am booked in for a hysterectomy in 4 weeks. They wanted to do it sooner but I'm getting married in 3 weeks. I am finding it hard to think positive. Every twinge, ache pain I now think is related. I'm not scared of the hysterectomy but I am scared of what they will find. Mine is growing in the wall of the uterus so they can't access it - if they do and don't perform a hysterectomy and it is cancerous they say the cells will spill and it will spread around my body. I feel I have no choice really. X
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