Experts have decided no radiotherapy...

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Hello everyone,

Just had the  call from radiotherapy after they had discussions with my surgical team and they had made the decision that I do not need radiotherapy treatment.

One one hand, I am elated as I know it's a tough gig. On the other hand, I feel slightly worried. They have said that ultimately, it is my choice and I can have it if I feel that I want it.

Their reasoning is that the tumour margins were clear but they have a suspicion that cancer may have gone into a blood vessel but are 80% sure that it had not. They said we should watch carefully and see if anything happens/comes back but if it does, I would have to have the surgery all over again plus radiotherapy.

What would you do? Thanks.

Cazzita. x

  • I just wanted to give you a hug .... 

    I had no choice and I too was 67 when my treatment started. What a dreadful decision to be left in your hands.

    At least they have actually found the primary cancer and removed it........I think I'd wait

    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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  • Hi Cazzita

    Your team would have definitely recommended radiotherapy if your margins were not clear so I think it is a win for you. You will be monitored regularly so if there is anything suspicious occurring they will pick it up.You could put radiotherapy on the back burner for now and then have it later if required. I would definitely wait and see and put my trust in my medical team. However it is a personal decision and completely up to you.

    The unknown future is always worrying but nobody knows what it might bring so think positively and move forward. I decided to put my trust in my team and let them do the worrying and get on with my life and that has worked for me.

    Sending hugs

    Lyn

    x

    Sophie66

  • Hi It’s so unfair for the onus to be out on you in the first place. But as others have said go with what your  team are telling you but please make sure you don’t slip  through the system chase up  appointments and keep a diary note if any symptoms or niggles. 
    hugs from me too . You’ll be on a watch and wait regime saving radiotherapy for later if needed  

    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/

  • Thanks lovely people, I feel reassured now and relaxing into the idea of being monitored carefully. Thanks so much for your opinions, they really matter to me. xx

  • Hazel is right. Dont let those follow up reviews slip xx

    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
  • I definitely won't. Thank you. x

  • Cazzita

    Your situation is  similar to mine 4 years ago.  I went with no RT after surgery (I had no primary to target).  It was my choice and the MDT agreed with me both times I made that choice.  I went on to what they call watchful waiting - an enhanced version  of the normal post treatment checks.  This process found my "returning" tumour both times when it was very small (don't worry about the tumour returning, read my profile to seem my unique cancer journey that is similar, but also very different from yours).  I decided to keep RT in reserve as it normally is a once in a lifetime process.  That time has now come for me 4 years down the road.  I am glad I made the choices I did as I've had 4 years of surgical side effects, but also 4 years of avoiding chemoRT side effects and had a whale of a time.  Happy to discuss further through private messaging if you feel it may help.

    Peter
    See my profile for more details of my convoluted journey
  • Your situation is  similar to mine 4 years ago.

    Yes but your primary was never found and Cazzita’s has and been dealt with. She is in a much better position than you. 

    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 Cazzita. Don’t dwell on having no radiotherapy the team will keep on eye on you. Nows the time to stop looking over your shoulder, eyes to the front and live your life. my mottos one life just live it. 

    hugs 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/

  • I totally agree, that is why I said my journey was different to hers, but the decision dilemma and the follow up scrutiny is similar. Also stating that i have not regretted my choices.

    Peter
    See my profile for more details of my convoluted journey