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ExH has tonsil cancer. Does anyone here have experience?

(12 Posts)
Mrsmorton Tue 16-Apr-19 20:04:36


BikeTart Tue 16-Apr-19 20:01:11

Bumping update.

He has also been diagnosed with lung cancer - a small tumour about the size of a 20 pence piece which he says is not related to the tonsil cancer which they found whilst doing a PET. They're apparently saying the chemoradiotherapy for the tonsil cancer will zap the tumour in the lung.
The tonsil cancer is the HPV one and spread to his lymph nodes in his neck, it seems, but amazingly he has been told he will recover from both cancers.

He is in hospital now though; he was dangerously dehydrated from the effects of the treatment and contracted an infection so he is having a PEG fitted this week and they had to suspend the treatment until he was strong enough.

My DD is coping well, all things considered.

OP’s posts: |
ComeOnGordon Thu 28-Mar-19 15:09:34

My exFIL had this 2 years ago. It was a very hard time for him. He had some post op complications which meant he had a tracheostomy for 6 months but he had chemo/radiotherapy during that time. He also had a PEG for that 6 months to keep his weight up as he struggled to swallow properly.

2 years down the line he’s still alive. His speech is nearly back to normal but his swallow will never be 100% and his taste buds have completely changed. He can’t tolerate any spicy food at all. It’s has been a tough, tough time for them and he was a fit man when it started.

His was an HPV related cancer which makes the survival prognosis a bit better. I’m just about to get my teenage sons vaccinated against it (not in the UK) in the hope that they never have to go through what their grandfather went through.

BikeTart Sun 24-Mar-19 07:24:08

@nannapat58 thank you.

I know now that his cancer is stage 2 and he didn't have teeth removed after all. It doesn't sound like it has spread as exH is convinced the chemoradiation is a cure.

He is having the PEG fitted this week, in week 3 of treatment and they had to adjust the mask as between diagnosis and radiotherapy starting the mass in his neck had grown. I'm supporting my DD during this as she seems more afraid and upset than he does ATM.

OP’s posts: |
nannapat58 Sat 23-Mar-19 23:05:56

My ex husband has this . In Oct had tumour removed 15 lymph nodes half his tongue . Had to b peg fed several weeks. Started chemo 5 sessions then radiotherapy 5 days a week for 7 weeks but has 2 wear face mask .

He is in America so my kids think if they doing treatment might help they would only do if good outcome. Medical ins have to agree to treatment.

My daughter has pic n looks really healthy .

Mrsmorton Tue 26-Feb-19 20:07:23

Precisely right about the radiotherapy. Reduced saliva production, reduced mouth opening and very poor bone healing are all side effects of radiation. Better to take anything that looks like it might cause problems, beforehand.

BikeTart Tue 26-Feb-19 20:03:15

Thank you for responding.
I don't think they had to remove parts of his neck, no. There was a gap of about two weeks, between the surgery and the news that he'd need chemoradiotherapy over 7 weeks and the PEG. I don't know what else he was told.

@Mrsmorton I've read about the tooth extractions as I didn't get why it's necessary; I made an educated guess that they took teeth which already required treatment to avoid later complications due to the effects of radiotherapy. The thing is my exH didn't take care of himself and didn't visit the dentist once in our entire marriage of 20 years, and not since he'd been a teenager before that, so I don't know how many they've had to take.

It's treatable though, and it seems that people do survive and get the all clear as you say @Fruitbatdancer. We're trying to stay hopeful that the treatment will work.

OP’s posts: |
Mrsmorton Tue 26-Feb-19 16:51:36

The side effects of radiotherapy in that area are pretty awful. Has he had any reconstruction after the surgery? Did they have to do an operation to remove parts of his neck?

It's an awful disease because its such an important area of your body. flowers to your daughter, you and your ex.

In the early stages of my career I was the dentist that did the tooth removal part, often as part of a bigger plan to reconstruct the jaw where that had to be surgically removed. (I'm not a dentist any more btw).

Fruitbatdancer Tue 26-Feb-19 16:45:27

Sending best wishes to you, a close friend was diagnosed with this about 18 months ago, male and similar age, operation followed by chemo and radio, he was given the all clear about 12 months later. Hang in there.

minieggsqueen Mon 25-Feb-19 00:06:48

I didn't know tonsil cancer was a thing (stupid question but can it be stopped by removing tonsils early on when diagnosed?)

I'm sorry you're going through this, sounds gruelling but it doesn't sound like he's taken care of his health much unfortunately (smoking).

Babyroobs Sun 24-Feb-19 23:49:09

The treatment can be very intense with nasty side effects hence the need for the PEG tube in prior to treatment starting. The aim to to keep the patient well nourished which will help with healing. Yes the smoking and drinking are likely to have contributed to developing it although some people can still develop it without those risk factors. He will need a lot of support as the treatment is gruelling.

BikeTart Sun 24-Feb-19 20:46:49

He had surgery to remove the growth, he has to have teeth out tomorrow before chemoradiotherapy commences and he'll need a PEG .
He is in his 50s, has been a smoker and has pretty consistently drunk alcohol since teen years, and these are the two risk factors for tonsil cancer, it seems.
I've read alot on the internet based on very little knowledge of the stage etc of his cancer but my guess is, from the treatment, that it was advanced before his diagnosis and it is known to be the more deadly of the head and neck cancers.
We have a daughter; she is trying to support him by taking him to the hospital appointments, and spending time with him; he is in a bad way psychologically and she is not talking about it. I think we need to be able to talk but I won't force her to.
Does anyone here have either medical knowledge or some experience of this particular cancer?

OP’s posts: |

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