No follow up scans

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Hi all

My treatment finished on 15th March and I’ve had 2 follow ups with my ENT consultant.

At both appointments I’ve been told there’s no need for any scans as there was no spread of cancer to the lymph nodes.

From visual checks of my mouth, a nasoendoscopy and a check of my neck and throat, they are confident the treatment has been successful.

I can’t help feel apprehensive that something may have been missed that would have been picked up by a scan.

I have a lump on my neck, which they think is a salivary gland and is nothing to worry about as it’s on the opposite side to where the tumour was.

Had anyone else experienced this and am I just worrying unnecessarily?

Thanks

Suzanne

  • At both appointments I’ve been told there’s no need for any scans as there was no spread of cancer to the lymph nodes.

    I was T2N0MO. ( no nodal spread either) and like you a had RT but no chemo. I had an MRI at ten weeks and a PET at 16. 
    At T4 I wouldn’t be happy with no post treatment scan. Where are you being treated? 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi Suzanne. As Dani says  I wouldn’t be happy at T4 not having a pet ct scan or mri after treatment had completed.i was a T2 with nodal spread   Are you at a cancer centre ? You’re not on any trial are you ?

    Hazel  

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi Dani, I’m being treated in Glasgow. I’ve tried to find out if this is a new protocol but I’m not sure. I just know I would feel more confident if scans reflected the same.

  • I’ve tried to find out if this is a new protocol but I’m not sure.

    I would ring your CNS to clarify. It seems a really negative economy. Do let us know what you find out. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Hi Hazel, no I’m not on any trial. I was treated at the Beatson Cancer Centre in Glasgow but I’m back at my ENT consultant in a different hospital.

    I was given information about joining a trial which if within the 50% selected I would get a scan at 12 months. My consultant is aware I would consider it just to get a scan.

  • I was given information about joining a trial which if within the 50% selected I would get a scan at 12 months. My consultant is aware I would consider it just to get a scan.

    Is this PETNECK? 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Yes it’s PETNECK2

  • Hi I was treated between 2 hospitals Leeds cancer centre then returned back to mid Yorkshire but at week 18 I was scanned at Leeds and oncologist gave me my results. As Dani says the pet neck 2 scans st s year were you unsuccessful on getting on the pet neck 2 group. I was always told I would be scanned at Leeds. Can you contact your cancer ir Macmillian  nurse to clarify. 
    Hazrl 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Right. PETNECK is for low risk patients. It involves a PET at a year and if no evidence of disease you go on self monitoring. While you do have supposedly guaranteed two week access to your team you aren’t seen in clinic again. It’s something to think about. I am a retired veterinary surgeon. I spotted and diagnosed my own SCC presenting to my consultant with this diagnosis. I am confident in what I see. Nevertheless I wouldn’t have enrolled if offered ( it wasn’t around when I was in my first year) 

    The routine clinic review was my mental safety net if nothing else 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Hi Suzanne 

    T2N1M0 Tonsil cancer HPV16+  finished chemoradio June 2023

    Had PET/CT scan In September....Ninewells Dundee....all good.... certainly gives us peace of mind....a neck lump associated with cancer was biopsied....came back positive and was treated during chemotherapy..... now gone....

    .If it was me I'd be pushing for a scan 

    Peter