Suspected Fibroid Sarcoma

So this horrific emotional rollercoaster started early November 2023.  Discovered an unusual hardness on my lower abdomen, thinking it was muscle I forgot I had after losing 6 stone in weight.  Went to the GP who referred me for an US as she suspected a fibroid uterus.  US confirmed fibroids but there was a 5cm mass poking off in the left adnexal.  Referred to gynae on a 2 week fast track.  Gynae said it was a pedonculated fibroid but would send me for an MRI to check as US couldn't see my left ovary at all.

Follow up gynae appointment: very large and abnormal shaped uterus.  No explanation what the 5cm mass was (although it's grown considerably since the US. Scans discussed at MDT and sent to local cancer centre hospital MDT.  Will need a total hysterectomy (everything is coming out) as he said he didn't want to risk any spread.  Now need to go for CT for chest, abdomen and pelvis to check lymph nodes and other structures.  Then meet with cancer specialist at the end of Jan 2024 to discuss if I need just the hysterectomy or if the cancer has spread.  But what is really worrying me, the consultant hasn't told me I have cancer, but all these test he's doing and the referral to the cancer centre is telling me otherwise.

  • Welcome to Cancer Chat, MrsH76.

    I'm sorry to hear about the emotional rollercoaster  you've been on since November 2023. Facing uncertainty regarding your health can be overwhelming, and the toll is certainly a significant aspect of the process.

    Many here will be able to understand  how the ambiguity surrounding the tests and referrals is causing additional stress and I hope some of them will come along shortly to offer support.

    The upcoming CT scan and the meeting with the cancer specialist in January will likely bring more clarity to your situation. It's essential to discuss any concerns or questions you have during these appointments, ensuring you have a clear understanding of the proposed treatment plan and what lies ahead.

    In addition, if you feel like asking some questions to someone medically trained prior your next appointment, our team of nurses are here Monday - Friday between 9a.m - 5p.m and would be happy to take your call on this freephone 0808 800 4040.

    I hope all works out for you, MrsH76. Once you know more please come back and give us an update.

    Best wishes,

    Renata, Cancer Chat Moderator