Newly diagnosed and unsure of treatment

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Hi everyone, I'm 55, male, and have been diagnosed with a sarcoma tumour cancer on one side of my larynx.

The 'good' news is that it is a Grade 1 sarcoma and is therefore unlikely to be fast growing and/or spread (not in the short-term anyway), but is not suitable for chemo or radiotherapy treatment.

I have been given three treatment options:

1) do nothing but monitor it and have MRI scans every six months or so

2) have a partial laryngectomy (just the one-side)

3) have a total laryngectomy 

Doing nothing is scary because it's cancer and there are no guarantees of it not spreading but then I'm not having major surgery and a major upheaval in my life.

Through the speech therapists at Castle Hill Hospital, my wife and I met with a fantastic 'larry' who was living well; still an active hiking enthusiast, was talking hands-free, pub-goer (albeit more quiet ones) etc, etc and he and his wife were just so very supportive. Indeed, all of the laryngectomy support Groups I have joined (some just as a voyeur for now) are full of people just getting-on and enjoying their lives - at the end of the day life is what you make of it. If need be, I therefore don't fear having a total laryngectomy as I once did.

But I haven't come across anyone who has had a partial laryngectomy - the speech therapists at Castle Hill have never helped anyone recover from a partial and the support groups that they have access to couldn't help either. It does seem more to have to relearn (swallowing and breathing) and more potential pitfalls since there is no guarantee that the surgery would be successful - if the tissues heal the wrong way and I have scar tissue and my wind-pipe becomes too narrow, I still may need to have the total laryngectomy (obviously undergoing another major operation and more recovery time).  

It's not that I'm worried that the speech therapists won't be able to help, they're so professional, we would learn and adapt together on that journey but I was just wondering whether anyone on here has recovered from a partial laryngectomy who could let me know what to expect.

Thanks for reading and take-care everyone!

  • Hi  
    I’ve put this same reply in the larynx cancer forum

    This one here is busier so it’s probably best to stay here 

    Sorry you are in this fix but welcome here. 

    Ask for a referral to Vin Paleri at the Marsden. He has pioneered partial laryngectomy surgery. An operation was even  featured on “Surgeons a chance for life “ on the tele. 

    Stay with us. There are lots of people here to help you. 

    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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