Check ups after treatment has finished

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I finished my treatment for HPV +  tonsil cancer in November. In February after scans they said the treatment had been successful but there is a 15% chance of this cancer returning. I was told I would be closely monitored but I haven’t heard anything from the hospital since then. I have phoned a couple of times to follow this up but they say I am on a waiting list. What did other people experience in terms of follow up in their 1st year and subsequent years after treatment had finished ? I am feeling a little anxious about lack of after care as I was told I would be seen every 4/6 weeks. 

  • Aahh, you will be checked but they will do 8 weeks or so after as you said.  Chase if you don't hear to stop you worrying.  They won't mind you ringing.   X

  • Hi and well done on your all clear

    I was seen two monthly for the first year, three monthly for the second and third and I'm now on  six months 

    I think that's the standard follow up in the UK

    You've done all you can. Just ring them up every week. My care is split between MaxFac and Oncology. My oncology set up is pretty slick and I have my appointment for March next year already. MaxFac are hopeless and last time I had to phone them and they slotted me in.

    My advice would be to have a good look around your mouth and get to know what it looks like so you can spot any changes. I still check myself weekly.

    Hope you get seen soon

    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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  • Hi

    Best thing I did once covid hit was forget about ringing general bookings I got hold of the medical secretary to my ent consultant.Like Dani I see my oncologist yearly no issues with his appointment but ent I had a nightmare once covid hit once I was told I have been downgraded to general ent and a 37 week wait. Oh no I wasn’t so that time I got hold of my Macmillan nurse who swiftly got me sorted then my ent consultant said here’s  my medical secretary’s  number ring her. Which I still do I rung 2 weeks ago and my next appointment is 17 May. When it should be. 
    First 6 months I was seen every 6 week  then every 8-9;weeks

    year 2-3 every 3 months 

    now year 4-5 every 6 months.

    I check my mouth at least once  a week and my hubby stands at back of me every month and checked my neck it’s routine for us now  I also have a high  magnification mirror attached  ti bathroom mirror at the right height so I can see into back of mouth  remember youGood luck Hazsl also need regular dental checks I go every 3 month.

    Good luck do it today 

    Hazelx 

    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/

  • I was seen every 6 - 8 weeks in the first year post diagnosis, but I am a slightly special case.  In the second year it was every 8 weeks.  I have now just negotiated that out to 12 weeks despite then wanting to go into the third year keeping it at 8 weeks.  It all depends on your risk factors and my return % was around 60%.

    That said they should be seeing you shortly.  However, if you don't push then it is easy for the administrators to keep pushing out the timeframe for your reviews. 

    I have always found my bookings clerk really helpful and they are on a speed-dial!  That is not always the case. Try a call to your CNS.  They can look up what is on the system and are normally in a good place to sort the issue.  Failing that your consultant's secretary; especially if you have a timeframe that your consultant said to you.  If you can tell the secretary that your consultant wanted you back at a certain timeframe and that is not happening they normally have a reason to sort it and satisfy their boss!

    Peter
    See my profile for more details of my convoluted journey