Neck Cancer follow up checks

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I have not been back here for some time now, but just to update my wife's condition and treatment, following surgery on her tongue and neck dissection to remove lymph nodes and part of thyroid glans, she was past on to oncology for 30 Radiation and 6 Chemo treatments which finished at the end of September. My wife then went into A&E with chest infection on 1st October and had to have a emergency Tracheostomy done and was in ICU for 3 weeks and was then transferred to ENT unit in another hospital where it was decided to fit her with a PEG feeder tube, while still in hospital in December we had a appointment with the Oncology department where the Chemo treatment was done the consultant was quite apologetic about the situation had developed and had a quick look at my wife's neck and said there was not much he could do. Any way my wife was discharged from ENT just before Christmas and as been back to ENT and swallowing clinics  on numerous occasions and also a unsuccessful attempt to remove the Trache was recently tried but she developed breathing complications.

My wife and I are getting on fine with the Trache care and Peg feeding tube now although my wife does still have some very bad days with fatigue etc, but we survive it all. The question I have is we asked one of the doctors on a visit to head & neck clinic about not having been back to Oncology since December for follow up scans on the cancer and he reckoned my wife had been discharged from their care  now,

I was under the impression that oncology did regular check ups on the cancer patients for numerous years after cancer was confirmed can any of you help put some light on this before I go and have a rant at our next clinic meeting. Thanks in anticipation of your replies and also thanks to all in the community groups I always check many of the topics that get put up here and in career support lots of helpful information. 

Thanks Steve 

  • Hi Steve

    Your wife should have PET scans every 3 months to start with - I finished treatment the same time and I’ve had 2. I’m still waiting for results from the 2nd one - but I think I ll be getting scans either every 3 or 6 months depending on the outcome for some time yet. You are right she should have regular checks for 5 years? 
    Good luck with the rant 

    Rachel 

  • I was under the impression that oncology did regular check ups on the cancer patients for numerous years after cancer was confirmed can any of you help put some light on this before I go and have a rant at our next clinic meeting. Thanks in anticipation of your replies and also thanks to all in the community groups I always check many of the topics that get put up here and in career support lots of helpful information. 

    Hi Steve. Your wife should be checked regularly for five years. I was reviewed every six weeks for the first year then every two months for the second, then every three for the third and fourth and six months for the last year. 
    One PET/CT is the usual at 12/16 weeks post treatment and if your wife got radical treatment aiming to cure no more scans are usually scheduled. 

    we asked one of the doctors on a visit to head & neck clinic about not having been back to Oncology since December for follow up scans on the cancer and he reckoned my wife had been discharged from their care  now,

    That’s probably right. There’s nothing more the oncologist can do. Most people are referred back to ENT or Maxfac after their post treatment scan if complete metabolic response is achieved. 
    My post Tx care was shared by Maxfac and oncology. Heaven knows why …. Its not usual. 

    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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  • I’m still waiting for results from the 2nd one - but I think I ll be getting scans either every 3 or 6 months depending on the outcome for some time yet.

    Hi Rachel. Why are you having PETs every three months ? Do you mind me asking? 

    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 Steve 

    Finished chemoradio June 2023 for tonsil cancer HPV16+....

    CT/PET scan in September 

    3 monthly checks for 2 years then every 6 months for a further 3 years....and then, with a bit of luck, discharged.

    Peter 

  • Hi Dani

    Thanks for your reply but this is the problem as my wife was in a different hospital from when Radiotherapy finished for 3 months very ill, and our meeting with the oncology consultant was only in his office my wife as not had any scan CT or PET from finishing treatment of Radiotherapy so I am assuming from what you say she should have had at least one scan before they decide to discharge her to ENT or MAXFAC. She does see the Maxfac consultant but he only does visual check of the mouth when we have appointments.

    Thanks Steve

  • Hi Steve. Yes then she does need a post treatment scan to evaluate response before oncology discharge her. Sorry, I misunderstood your post. 
    MRI or PET. 
    I hope you get somewhere. It does sound absurd that it’s been missed. 
    I suppose Maxfac don’t  scope her either. 
    Perhaps a complaint via PALS might get things moving. 
    It seems the two hospitals aren’t talking to each other. 

    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 My oncologist only sees the patients up to treatment ending at my cancer trust then we are handed back to the ent consultant ( I was slightly different my oncologist  wanted ti see me every year to chat but we met in his lunch hour that way I didn’t take up a patients appointment) 

    I had my pet Ct scan resukts given to me by my oncolisgt 18 weeks after treatment  

    The oncologist position is to see you  at diagnose  work out your individual  treatment plan see you through treatment then move on , in most hospitals to the next round if patients. Logistics say they couldn’t possibility see everyone over a 5 year period especially in the early years as were seen every 6 weeks. They joke t have time to see new patients for seeing old ones. Hence hy as the years go by even at consultant level you don’t always see the same one well at my trust you move down the pecking order unless you have reoccurrence s. 

    I was  seen by the top ent guy for 2 years every 6 weeks the first year then moved on to 8 weeks gradually then 3 months and seen by a new consultant dinky in last 2 years every 6 months. 
    hope this  ramble makes sense and also hope your wife gets sorted with her trache, radiation fatigue is debilitating I had it for a good 18 months I learned to listen to my body and not fight it I became the queen of the 20 min Power Nap 3 times a day. 

    hugs 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 Rachel why are you having regular scans it not the usual route. In fact my dentist  won’t even x Ray my teeth ( she says I’ve had my fair share of radiation with a pet Ct scan at start of treatment and one to confirm treatment had worked. I’m struggling to think of anyone I’ve met over last 6 years having regular scans unless they’ve had reoccurrence and  further treatment. Just wondering why you are having them every 3-6 months.  The scope is the usual way of checking after you’ve had your treatment results. Would be interested to know were you in a specific trial ?stating scans can’t see them being pet Ct scans due to aforementioned radiation exposure  

    hugs Hazel x

    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  

  • I had my first pet scan 3 months after treatment and was sent for an ultrasound needle biopsy as there were some active cells. But when I went for the biopsy I was told that there was nothing there - he then referred me for another pet scan after 3 months and I’m waiting for those results now. 
    I haven’t seen the consultant since I was referred for the first pet scan. 
    I should start chasing results but I’m just getting on with life and hoping no news is good news. 

  • Ah I understand. I had a hotspot too but it was decided to biopsy rather than re scan three months later. 

    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