Neck tumours

FormerMember
FormerMember
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Hi all so last March I found out I had tongue cancer in which I had removed last May along with lymph nodes because my cancer was high grade I had 6 weeks of radiotherapy which finished late August! 
a few weeks ago found out my cancer is back, my MRI showed it was just on the skin but then had a PET scan that’s showed up more than we thought in my neck and some where i had the actual radiotherapy! Unfortunately they can not operate so my consultant is talking about controling it, i think he mentioned either chemo or immunotherapy I’m meeting with a professor oncologist on Monday to find out more!

im 33 year old single mum so I’m just hoping there’s some positive story’s out there regarding chemo etc working! I’m not ready to leave my children!!

  • HI Sophiemarie88.  Welcome to our group.  There are people just starting treatment, those part way through and those who have completed treatment.  You should get a good set of positives - and also the pitfalls to look out for, and how to deal with them.

    It is sad that the cancer seems to have come back so quickly.  I had a "return" after about a year so I know a little of how you are feeling.    My treatment pathway is a little unusual so I would not compare the physical aspects with yours, but mentally I understand.  Now I personally feel that I am leading as near similar life as I did pre diagnosis. 

    I've no personal experience of a cancer being controlled rather than being cured, but 2 neighbours of mine are on immunotherapy for different cancers and they are both still alive and kicking.  I think one with bowel cancer has passed his 11 year mark.

    There will be a few who are doing additional chemo and immunotherapy on here who can probably offer more relevant advice on the treatment.

    Stay with us and we will be here to help you.

    Peter
    See my profile for more details of my convoluted journey
  • Hi SophieMarie88 Sorry you’ve  found yourself on here but welcome to our little group. There are a few in here who are on immunotherapy treatment hopefully they will pop on soon. Let us know what  the oncologist says on Monday and sending hugs to you snd your family. 
    If you can take someone with you as we all know sometimes we don’t take all the information in. 
    Hazel

    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/

  • Good evening Sophiemarie, sorry to hear the  cancer has returned, i had it return twice after my first operation with radiotherapy, my last operation was in 2010 , thankfully i have had no issues since. There have been some very positive posts on here reference chemo/immunotherapy as operations were not an option. I have not experience immunotherapy as i dont think it was in its infancy when i had my cancer but it shows that new treatments are more advanced nowadays with greater recovery results, i know its hard to be positive but im sure its my positivity that helped me get through it all. Wishing you all the best on Monday with your oncologist, please re-post if you have any concerns and we will try and guide you. Take care, stay strong.

                                                                                                      Chris x

    Its sometimes not easy but its worth it ! 

    Community Champion Badge

  • FormerMember
    FormerMember in reply to chris2012

    Wow thankyou everyone for your positive words just what I need! I have 2 very amazing little girls who I really need to fight for! I’m trying to focus on Christmas for them even though my 10yr old is at her dads this year and it’s my youngest birthday just before so party planning is distracting me!

    im used to be so nieve and think there was just 1 lot of chemo but I now know there’s so many more medicines out there and reading lots of these posts have made me feel more positive Il be hopefully able to live a long life! 

  • You are welcome Sophiemarie, sounds as if you are going to have a busy time ahead with Christmas and a birthday, its always good keep busy. Wishing you and your family a very Happy Christmas .

                                                                                       Chris x

    Its sometimes not easy but its worth it ! 

    Community Champion Badge

  • FormerMember
    FormerMember in reply to chris2012

    Hi all, met my oncologist today and she was lovely, she is going to start me in Jan so I can enjoy Christmas on chemo ( tablet form) and on top of that antibodies! Feeling a lot more positive now I know there is a plan! X

  • Hi That’s good news once you’ve a plan in place everything seems clearer. Bonus you like your oncologist mines lovely as well. 
    Enjoy Christmas with your family pop on here when you need to. 
    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/

  • FormerMember
    FormerMember in reply to RadioactiveRaz

    Thankyou so much, what an amazing group this is! I wish you all a lovely Christmas! Xxx

  • Good evening Sophiemarie88, thanks for your update, it makes a big difference having a good team looking after you. This sounds like the best plan due to this new covid virus so you can be at home and still get some sort of treatment, keep up the positive vibes and enjoy your Christmas, as Hazel said just re-post if needed, best wishes, enjoy.

                                                                                Chris x

                                                                                  

    Its sometimes not easy but its worth it ! 

    Community Champion Badge

  • That's great to hear Sophiemarie.

    Have a great Christmas and all the best for 2022.

    Linda x