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Grade 2 Spindle cell sarcoma

Retiredviolin
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I was diagnosed with a grade 2 spindle cell sarcoma and the NHS went into overdrive. They have been amazing, but in September things slowed down and my tumour at the top of my right thigh has grown considerably.  I had to wait for nearly 3 weeks for a PET Scan. I didn't want an MRI as I have a cochlear implant and it was too risky for the implanted magnet. My radiotherapy planning appointment is tomorrow which means by the time I have my first dose the mass will have grown again.

Will the tumour still be grade 2 at this stage? Will the radiotherapy cover the entire area, now a good melon size! I'm nearly 80, so have no illusions about a cure, but I worry that this delay will not help. I really hope the radiotherapy will give me some pain relief and enable me to walk a bit.

I believe surgery will be in January.  I have bronchiectasis, which complicates matters too.

If you can reassure me I would be very grateful. 

Retiredviolin 

  • Hi Retiredviolin and thank you for your post.

    I’m sorry to read about your diagnosis of  spindle cell sarcoma and can appreciate how stressful it is waiting for treatment to commence.

    Normally, radiotherapy treatment begins soon after the radiotherapy planning appointment.

    Unfortunately, I cannot specify the grade of the tumour only another biopsy could reveal whether the tumour has altered in grade.

     Usually, the radiotherapy will target the entire area, but these are questions your radiology specialist may be able to answer. If the radiotherapy is successful and reduces the tumour, then hopefully it will help ease the pain.

    If you are concerned about any aspects of your care then you could voice your concerns to the Patient Advice and Liaison Service (PALS).

    I hope all goes well with your radiotherapy and subsequent surgery.

    If you would like anymore information or would like to speak to a nurse   our freephone  number is  0808 800 4040 and the lines are open from 9am till 5 pm Monday to Friday.

     Kind regards

    Tina

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