Tongue cancer

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I was diagnosed with tongue cancer Feb 2023, I had 6 weeks of radiotheraphy 5 days a week and 2 high doses of chemo. Was given all clear in September 2023. I had another scan in March 2024 clear. In October 2024 I felt another lump on my tongue went to see oncologist who felt my neck no lumps, put camera up my nose all clear but sent me for MRI scan anyway.

Relieved a phone call from him two weeks later scan showed abnormalities so had another biopsy and was put a sleep. Results showed cancer had returned in same area.

Option was sugury to remove half my tongue or immunotherapy.  I didn't want the surgury,  spoke to my cancer nurse who advised me to go for surgury as immunotherapy would only give me a couple of years to live so I felt I had no choice but to go for sugury.

Surgury booked for 2nd Dec 24, to remove half my tongue and take a graft from my arm to replace part of tongue he was removing, told me operation would take 9 hours.

I went down for surgury, when I woke up my oncologist was sat on one side cancer nurse on the other. He explained that he had put in the Tracheostomy but stopped operation half way through as tumour had slightley gone over to left side which meant he would have needed to remove all my tongue and voice box. I couldn't take it in as I had only just come around. 

My cancer nurse then said I should revalue my life and finish work and spent time with my family which I thought was not right to say at this stage. I asked her 5 times if I was dying and she replied no. 

Anyway I now have a different consultant and I have started immunotherapy.  I feel something went wrong on their part and it was wrong for my cancer nurse to say that as she is now for immunotherapy and says it has excellent results. I am feeling angry and let down

Many apologies for moaning 

  • Many apologies for moaning 

    Don’t apologise. We are here to listen and try to help. 
    It must have been a dreadful shock. The reality is that very often scans don’t show the full extent of disease and it’s only a visual exam that does. Immunotherapy can work really well in some people so I suspect pressing you for surgery in the first place was the reason behind the decision. A complete tumour free margin is better than immunotherapy. 
    It’s a pity this wasn’t explained in a kinder manner. 
    Nevertheless your new team seem to be on track so fingers crossed it works for you. There have been some good results. 

    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 don’t apologise for moaning we’re all here to help. Like Dani says what a huge shock for you to wake up to. Immunotherapy has had some good results recently   I’ve a friend whose had 2 years immunotherapy and now is over 18 months since his last one his was spread to lungs. 
    hugs 

    Hazel x

    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 Hazel

    Has he had clear scans, did the immunotherapy work

    Night x

  • Hi Yes he has been scanned every 3 months now going in to scans every 4 months. He has a blog  his cancer was originally like mine tonsil cancer but spread to lungs. It’s quite a technical blog if you  want to read it  you can send him a message via his blog as well  

    https://ansmackay.wixsite.com/uclgeography/blog

    Hazel xx

    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 Hazel 

    Thank you, I only had one treatment so far. Cancer does change you and I know I will never be the old me. Ambjust trying to find the new me as it can be so scarey. My emotions have been all over the place . But he has done so well, remaining positive is the key. 

    1. Night x
  • Hi Take everything one day at a time and everything x  for you. Yes Anson has done well and is continuing  to do so. Positivity can help. 
    night night 

    Hazel x

    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/

  • Has he had clear scans, did the immunotherapy work

    Hi Night. 
    Hazel has given you a link to  

    who you and I discussed earlier here 

    https://community.macmillan.org.uk/cancer_types/head-neck-cancer-forum/f/diagnosis-and-treatment/287356/tongue-cancer

    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
  •   it sounds like you've had a torrid time of it. For what it's worth, I also had issues with my cancer nurse telling me I would have to go on particularly horrible treatments, which wasn't the case. But these interactions did cause me stress and I requesrted from my oncologist that she not be involved in my care again. 

    But it sounds like you are now on the immunotherapy pathway, which is potentially very good. As a couple of others have mentioned, I did a course of 2 years and at the moment have no visible signs of disease. 

    How are you tolerating the immunotherapy? Are you on Pembro? I'm more than happy to chat to you about any questions you may have regarding side-effects, treatment or even just what next.... Take care, Ans

  • Hi Crofterlad

    Thank you so much for responding I really appreciate it. Yes it hasn't been easy, am normally a very positive person. But this has took it out of me.

    When radio and Chemo didn't work, she wanted me to have operation as I didn't want it so told me immunotherapy would only give me 2 years so went for operation then when that didn't work she was all for immunotheraphy

    I'd only just come around from operation and she told me to reevaluate my life stop working and spend more time with my family. To be honest she has frighten me and I've lost my confidence 

    I have worked in care for 30 years , I manage a home for adults with learning disabilities which I love.

    I've only had my first treatment my next in on 10 Feb. I have been OK unfortunately I was poorly with infections and spent a week in hospital but this was due to not getting the treatment I needed and was sent home twice even though my temp was

    38.4. After complaints made by my daughter I soon got a bed on cancer unit. 2 lots of antibiotics by drip. It was neglect on their part.

    I won't have a scan until I've had 3 treatments yes am on pembro. How do you you know if it's working. They don't ready explain but am not giving up 

    Sorry for long reply talking to someone who understands really helps 

    Night 

  • Hi Night, no reply is too long, or questions too many!!

    It may be that different NHS Trusts have slighlty different methods but mine was:

    1. before I was due to have a Pembro infusion I would get a call from the Trust (it might be a doctor at first, but then might shift to an assistant) asking if I was feeling OK. This is just check if I was tolerating the drug. Common side effects may be stomach and other gastric issues, fatigue etc.

    2. as a second step to monitor any side effects, I also needed to give a blood sample to the hospital 2-4 days before hand. This allows them to check your blood cell counts (white blood cells, red blood cells, platelets and neutrophils).

    3. I'd go get my Pembro infusion every 6 weeks. At that infusion, you will get your cell counts back 

    4. then every 3 months you will also get a CT scan(s) done. As my cancer had spread to my lungs three different regions were scanned: head and neck; chest; abdomin. And then about 2-3 weeks later you'll have an appointment to go see your oncologist where they will explain the scans and what, if anything, is happening to your tomours.

    I wrote a bit about this process here: https://ansmackay.wixsite.com/uclgeography/post/hello-2023-you-re-an-unexpected-but-welcome-delight

    Basically what they are looking for is:

    1. have the size of your tumours changed since the last scan. From what I can remember, the first scan may show that the tumours have increased, but this might be because of reactions between your immune system, your tumours and Pembro. It is the second and third scans that are more important. 

    the oncologist will be looking to see that your tumours have either stayed the same size or have shrunk in size

    2. are there any new tumours appearing.

    If from scan 2 onwards your tumours show an increase in size or number, then the Pembro is not being effective and they will try another treatment. If your tumours stay the same size and no new ones develop, then that shows you are having a  reponse to the Pembro and they will keep you on the drug (assuming you are able to tolerate the side effects ok). 

    The side effects can be really serious though, so always listen to your body. Where with chemo and radio the side effects are bad, they are somewhat predictable. With immunotheapy, they are much less predictable.

    Best wishes, Anson