Follow ups after treatment.

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Hi,

Can you advise what happens after you have been told that your treatment was successful and you now have follow ups for 5 years until you are officially Cancer Free.

What do they do at these follow ups and downs you have anymore scans etc?

Just wanting to know the processes and what people have been through.

Much appreciated 

Sarah xx

  • I was seen every two months year one, every three year two and three then every six months years four and five. 
    I was split between Maxfac and oncology who saw me alternately. Oncologist did a neck feel and a nasoendoscope, Maxfac just a visual exam. 
    PET at 16 weeks. 
    At five years I was discharged from routine review but kept in the books. We are NED but never cancer free. 

    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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  • FormerMember
    FormerMember

    Hi Sarah

    Routine reviews every 3 months for 2 years....then every six months for the next 3 years.

    Dental Hospital reviews every three months....so far....

    Fixed up with gum trays which I use daily with Duraphat.

    My own dentist has been told that I require 6 monthly check ups.

    Peter

  • I have been seen by ENT every two months for the first two years but it will now be moving to three monthly after my two year anniversary. I will be seen up to 5 years but not sure about the intervals going forward.   I am on a research trial so I’m also seen at specific points for that too by the oncology team.  They also take my bloods.  That stops at my two year anniversary.  I had the PET CT scan about 3 months after treatment.  As it was inconclusive, I had another one after another 3 months (same as Rhod Gilbert).  

  • Hi Sarah 

    I am now one year post treatment and am being seen roughly every month.  No sign of that reducing, but I am a sort of special case and the Drs find me "interesting" so like examining me.  It can be longer between checks if I want to go away.  I don't mind it too much as I'd rather have early warning of any potential problems. I've not had any scans aside from the post treatment PET in all my years of being under supervision (watchful waiting) but they do regular nasaloscopies and feel my neck.

    Even if you don't have such regular checks - and it seems to vary from hospital to hospital - you can always raise any concerns at any time with your CNS and they will get you in if need be. 

    Peter
    See my profile for more details of my convoluted journey
  • Just wanting to know the processes and what people have been through.

    Just wanted to add that routine short interval review after treatment seems to be both reassuring and stressful at the same time. 
    There is a trial ongoing for low risk patients to self monitor after a PET at a year. Lots of data shows that most treatment failure and recurrence is spotted by the patient not in routine checks. 
    I think having access to your team in the early years is the important thing whether patient or clinician driven. 

    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

    Community Champion badge
  • Hello Sarah
    Similar experience to Dani, but done by ENT not my oncologist (who I’ve not seen since the end of treatment).  For the first year it has been an appointment with ENT every 6 weeks.  I had one appointment post treatment with Maxfac. She decided I was looking after my teeth well enough to discharge me.  I see my own dentist and hygienist every 6 months as instructed by Maxfac.

    I had an MRI and PET scan at 16 weeks. Had a further MRI at just over 12 months as consultant wanted to check out swollen lymph node on the same side as my surgery.  Results negative, but good to get it checked out.   ENT do neck feel and nasoendoscope. Second year reviews are due to be 3 monthly.

    As I understand it, further scans are done only if something doesn’t seem normal just to check it out.

    Liz

  • Hi Sarah, I had stage one tongue  cancer  last Feb diagnosed. I had head neck dissection and op on my tongue. No node spread .RT finished end of June..I get seen every month by max fax consultant for first year. Every two months second year and three months third year. Four months four year and every five months fifth year. If I get worried about anything I contact my nurse and can come into a clinic at anytime. I have to say my max fax department are amazing . I feel very very blessed. X Jackie 

  • Hi. I’ve been told I’ll be seen every 3 months with a CT scan every 6 months. That will be reviewed after 1 year. I’m seen by my ENT surgeon - I’ve never had an oncology appointment. I guess this is because as I’ve only had surgical treatment. 

    Lots of discussion here about scanxiety - I find it stressful when I don’t know what to expect or when appointments change. Other than that I don’t find check ups stressful