suspected sarcoma

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Hi everyone,
I’m new here and don’t have an official diagnosis yet, so I hope it’s okay to post.

I’m currently waiting for results from an excision biopsy for a suspected soft tissue sarcoma. I had a small (less than 1cm), hard, painless, immovable lump on my left thigh. My GP thought it was likely a lipoma but referred me for an ultrasound, which was inconclusive (the result came within 4 hours and my GP urgently referred to the sarcoma centre.

Within 2 working days, I saw an oncology nurse, and a few weeks later, after their MDT meeting, I met the doctor. They said the ultrasound and physical presentation were inconclusive and recommended removing the lump completely for biopsy (scheduled within 3 weeks) since it’s too small for MRI detection.

I had the biopsy last week and was told by the surgeon and staff that results would take 2–3 weeks, and I’d be contacted with the outcome. However, this Tuesday I received a notification on the NHS App and Patients Know Best saying the results won’t be available until 17th September—6 weeks after the biopsy.

I called the sarcoma unit and was told the test result itself isn’t delayed rather they purposely changed the result settings so I cannot view the result yet (not until 17/9)

I’m sorry if I’m complaining—I know my GP, sonographer, and sarcoma staff were all very kind and efficient, from referral to biopsy. But now, with this deliberate delay in viewing the result, I’m stuck in limbo and keep imagining worst-case scenarios. The wait is really stressful. I’ve been trying not to Google sarcoma too much, but it’s hard not to worry.

Has anyone else experienced a delay like this? I know sarcoma is rare, but I feel really stuck and anxious whilst waiting. I haven’t told my family yet (only my boss and a close friend) as I don’t want to cause them unnecessary worry.

Thank you for reading.

  • Hi  

    Welcome to our community, I hope you find it both informative and supportive. You are very welcome to post here as is anyone concerned about cancer.

    I am Steve one of the community champions and my experience of cancer is via my wife who has Leiomyosarcoma, people will often first meet me via our Soft tissue sarcomas forum .

    It is perhaps worth noting that all possible cancer referrals are tagged as urgent so worth not reading too much in to that. I also recognize the pain of inconclusive results, Janice's diagnosis seemed to take forever and even then there are some elements that were not totally clear. However for her the good news was after two different lots of chemotherapy they managed to get her cancer stable and for over 10 years now we have been living with cancer - as my wife says "it is not bothering me and I am not bothering it".

    Something I have seen in the past too is a a biopsy getting sent on for a second opinion and of course that adds to the processing time - not sure if that might be what happened in your case of course.

    Fingers crossed for you, do let us know how you get on.

    <<hugs>>

    Steve 

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