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Hi all. My Father was diagnosed with laryngeal cancer two years, had [...]

Posted by Scott Wilson @scottwilson7127146, Aug 9, 2013

Hi all.
My Father was diagnosed with laryngeal cancer two years, had radiotherapy was cured, but had a recurrence. So last year he had a total laryngectomy, was given the all clear and a few months ago was told it is back and nothing can be done. He speaks with a prosthetic valve that connects his trachea to his oesophagus.

He lives in a provincial city in New Zealand, with no oncologists and no medical professionals with any experience of handling tracheostomies, so my mother spends every day cleaning the stoma for him, applying suction to clear phlegm and cleaning his voice prosthesis.

He has been told that he is likely to die by Christmas, but there is no interest in examining to see the staging of his cancer (it was T2, M0, N0 of the glottis) he has been told he may die of a catastrophic haemorrhage resulting from a tumour eroding an artery, and has also been told that he cannot get a new voice prosthesis because it is "too risky".

The strong impression we have been given (and I live in the UK) is that he is a lost cause, and there is no interest at all in providing medical treatment beyond respite if there is pain (and he has none, and is otherwise fine, just needs stoma care, has to eat small soft portions of food because of the tracheostomy's effect on the trachea diameter, and lost weight).

Our chief concerns (besides when he eventually will pass away) are:
- The veracity behind the claim that he simply cannot get another voice prosthesis (the current one is significantly eroded and as a result he can hardly talk);
- Unwillingness of medical professionals to undertake regular checks of the progress of the cancer (he can see a general practitioner who does what he can, and there are no signs of any progress yet);
- Complete lack of any experience in stoma care, including how to deal with minor wounds that appear and disappear.

It's been a lonely process for my Mother who is his full time nurse in effect, as she has picked things up as she has gone along, and I am simply reaching out to see if there is anyone else with experience in looking after someone with terminal laryngeal cancer post-tracheostomy.

Best regards

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I am so sorry to hear this. My prayers are with you and your family. I don't have any information to give, although my brother is finishing up with his radiation for S3 laryngeal cancer. I hope you find someone on here who can guide you in a direction that will be positive for you.

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@tnash

I am so sorry to hear this. My prayers are with you and your family. I don't have any information to give, although my brother is finishing up with his radiation for S3 laryngeal cancer. I hope you find someone on here who can guide you in a direction that will be positive for you.

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Thank you for your response. Sadly he passed away on 2 February as the cancer, although localised took over a major artery. All my very best wishes for your brother, I wish him well in his treatment clearing the cancer for him.

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@tnash

I am so sorry to hear this. My prayers are with you and your family. I don't have any information to give, although my brother is finishing up with his radiation for S3 laryngeal cancer. I hope you find someone on here who can guide you in a direction that will be positive for you.

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Scott I am so sorry to hear that. Please know that you are in my prayers.

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