Treatment nearly finished - what next?

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Hi everyone

By some miracle, a little pressure, a whole load of support and a lorry full of medication, I seem to have almost reached the end of treatment. 7 chemotherapy sessions and 26 radiotherapy endured. Just 4 more radio to the end line.

I’ve had lots of advice about symptoms continuing (and worsening initially) so am not expecting anything miraculous in the next couple of months.

What I really want to know is what scans will they do to determine the efficacy of the treatment and when are these likely to be done. In addition to the main tumour (base of tongue) I had 2-3 affected nodes. The one to the right of my neck is still as big as ever (actually visible - you don’t need to feel for it). Is this a bad sign or could it just be swelling from the radiotherapy.

trying to be positive but must also be realistic and nobody ever made any promises

David

  • Hi David. I had my pet ct scan 17  week s after treatment finished my oncologist didn’t do them any earlier as sometimes false positives occur. Where radiation hot spots still remain. Sone trusts do pet ct some do mri  then pet ct scsn if needed . Ask your oncologist is best advise. Don’t stress about remain g lymph nodes the treatment is brutal and all takes tone  to settle down. I had my uvula melted by radiotherapy I didn’t know for months as I couldn’t or woukdnt look inside my mouth. It was a shock when my dangly but at back if throat was no longer there. 
    well done on approaching the end time tk hunker down for a few weeks rest and recuperate. Our type  of cancers respond extremely well to treatment remember that. 
    this  us s good read. Hazel x

    https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi David. Don’t worry about the node. It takes a while to disappear

    The standard check is either an MRI or PET/CT at 12/16 weeks. 
    I had an MRI at 12 and a PET at 16. It’s usual to have just the one. I had an MRI at 12 weeks for other reasons. 

    Dani 

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

    I BLOGGED MY TREATMENT 

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

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  • My husband is nearly 9 weeks post treatment and hasn’t received an appointment yet for a PET scan. His oncologist said they’d rather leave it to 16 weeks as 12 often still show hotspots. His lymph’s were still visible a aweek after treatment again oncologist wasn’t concerned at all when she examined him for discharge . Bit of a waiting game.

    During treatment the care and support my husband received was 5* after discharge he’s been left a little in limbo.

    Think positive, just look at all the success stories that there are here just in this forum alone.

    best of luck for the next few weeks. 

  • I had what they called a ‘baseline’ MRI scan at 16 weeks. That was nearly 2 years ago and since then I’ve just had two monthly face to face meetings, including a nasendoscopy, and telephone meetings with my team. I’m now on three monthly meetings, alternating face to face and telephone consultations.