Has your speech or voice changed after a cancer diagnosis or cancer treatment?

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Hi everyone,

We just wanted to share a blog which you might find interesting, around speech and voice changes following cancer. We wrote this blog with a focus on mouth cancer as it was Mouth Cancer Action Month in November. The blog features members' experiences and resources that may be useful. Why not give it a read?

Has your speech or voice changed after a cancer diagnosis or cancer treatment?


If you have any topics you'd like us to cover in Community News, please just let us know at community@macmillan.org,uk.

Best wishes,

Eliza
Macmillan Community team

  • Thanks for the link Eliza and well done Chris for his part in it, you've also quoted me in there Slight smile

    Two of the speech options Chris talked about (valve and elecrtrolarynx) weren't suitable for me as my tissue was too badly damaged by radiotherapy; the valve because they were worried about making an incision to fit it, surgeon said it would be like trying to operate on cardboard and the electrolarynx (which I tried) was pretty hopeless as the RT damage meant there was very little vibration for it to pick up. I did try oesophageal speech but I found it very hard to do, and so I made the decision to remain voiceless and I'm comfortable with that now having lived with it for fourteen months. It is still possible to make various vowel sounds by clicking my tongue etc and that allied to emphatic mouth movements to enable people to lip read gets me by (though I always carry a pen and paper as well), people close to me "hear" what I'm saying 90/95% of the time.

    For the first six months or so I always covered over the HME in my stoma with a scarf when I was out but not any more, get the odd strange look but I can live with that.

    Community Champion Badge

    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/

  • Thank you Eliza for highlighting this. 
    I am  totally in awe of people who cope so well being unable to speak but both Chris and Mike here prove that doesn’t mean voiceless. 
    Well done you two for  supporting so many people here in the way you do. 

    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 ahve to say that we Laryngectomy people seem to be so rare that I find it difficult to find anyone who has also gone through the same problem and to either help or ask for help for this particular cancer, I unlike MikeO didn't have any RT as I refused and for the reasons he mentions but my valve was fitted at the time of surgery so it was for picking up any after bits, the risks attached were not compatible with the benefits.

    It turns out I was right as I now have Oesophageal cancer - just at the start- which is not connected to the voicebox cancer, both my Consultant and Oncologist have told me that had I accepted the after RT then this cancer would not have been easily treated, so I can have chemo and RT which they are sure will clear it - fingers crossed

    Community Champion Badge

    We will move mountains to help people with cancer live life as fully as they can.
    We'll do whatever it takes. For information, support or just someone to talk to,

    call 0808 808 00 00 or visit www.macmillan.org.uk

    Onwards and UpwardsWink Laryngectomy and OC survivor 

    Lead Volunteer for Hampshire MacMillan Buddy Service

  • so I can have chemo and RT which they are sure will clear it

    That is good news that it can be fixed. I hope you make a good recovery 

    Best wishes 

    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 , thanks for getting in touch and sharing your perspective. I hope that you thought the blog was a helpful resource but please do let us know if we missed anything. Would you be happy for me to potentially add what you've said here into the blog? Slight smile

    Best wishes,

    Eliza
    Macmillan Community Team

  • Hi , thanks for getting in touch. We thought as well that it was a really important topic to highlight, and of course an opportunity to share the amazing support that you all offer each other here in the group. 

    Best wishes,

    Eliza
    Macmillan Community Team

  • Hi , thank you for getting in touch. I hope you found our blog helpful to read through. I hope as well that you will find comfort and support here on the Online Community during and after your treatment. 

    Please remember as well that our Support Line is here for you, if you would like to access further support or talk to our specialist teams. You can contact the Support Line over emaillive webchat or by calling 0808 808 00 00 7 days a week between 8am-8pm. 
    We're also available over email at community@macmillan.org.uk if we can do anything further to help you at all, or if you have any questions.
    Best wishes,
    Eliza
    Macmillan Community Team

  • Absolutely no problem with that Eliza, always happy to help in any way I can.

    Community Champion Badge

    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/

  • Hi Mike

    I had my laryngectomy one month before you, but I am in adifferent place in that I have a voice even though at times that gets difficult, until my new cancer came along I was just starting hands free but for the moment have stopped trying, the other problem I have is baseplates blowing that is so frustrating, but thank the Lord for my speach therapists at Royal Surrey

    Take care

    Tony

    Community Champion Badge

    We will move mountains to help people with cancer live life as fully as they can.
    We'll do whatever it takes. For information, support or just someone to talk to,

    call 0808 808 00 00 or visit www.macmillan.org.uk

    Onwards and UpwardsWink Laryngectomy and OC survivor 

    Lead Volunteer for Hampshire MacMillan Buddy Service

  • His Kasvin, I actually had the radio (and chemo) back in 2014 and got five year all clear before my next diagnosis last summer, so it was never a case of choosing one or the other for me. Good you have the RT/chemo option now to hopefully smash it.

    It's true there aren't a lot of us about, don't know who provides your medical stuff but mine come from Atos, who are pretty good at running "webinars" where you do actually get to see and interact with real people who have an HME in their neck, good place to get support.

    Very best with your treatment, it's no picnic but you'll get through.

    Community Champion Badge

    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/