Throat Cancer - Radiotherapy and Clinical Trial? [Title changed by MNHQ at the request of the OP]

[Theonlyoneiknow]

Hi,

I was wondering if anyone could help me interpret my dad's discharge notes. He has a throat biopsy yesterday and this was on his notes. My mum tells me that the PET scan he had last month indicated there was cancer in his throat so I'm just trying to prepare for the news that might be coming our way.

Thanks in advance!
TOOIK

Ah OP if I could reach through the phone and give you a hug I would!

My mum was very stoic, until she collapsed at home after about 7/8 weeks of radio. A combination of the pain, tiredness from not sleeping and exhaustion from not eating just caught up on her. She was admitted to hospital and stayed for about 4 weeks with a feeding tube.

That bit was scary to see, and she lost a lot of weight very quickly. It was hard keeping her spirits up in hospital as she was so bored and had so much time to mull over the shittiness of the situation. Dad got her set up with a tablet she could watch films and Corrie on, which was a game changer.

I’d bring my small dc up to see her (dc2 was only a week old when she was admitted) and she found that a great distraction. Visits from wider family and her circle of friends meant a lot too.

When she was discharged after about 4 weeks she came home with a morphine pump and visits from the pain management nurses, so there was no panic about her leaving hospital in unbearable pain.

It was bloody awful at the time. This was 5 years ago, now we talk about “that time mum had a touch of cancer”

I would recommend going with the tube sooner rather than later. I know it sounds awful, but if he is to cope with treatment he needs all his strength. He needs to get the calories in. My father had cancer of the esophagus, and he resisted putting the tube in, which weakened him and finally made him too weak for chemo and radiation.

I had the peg inserted as an insurance back up, I needed it immediately, I also took my morphine through it and I had opioid patches.

DH had the tube before he started radiotherapy. He wouldn't be alive if he hadn't had it. The radiotherapy is absolutely brutal (but if course worth it). The problem is that it carries on getting worse after they have stopped treatment & there's nothing you can do. They just gave to remember that it WILL get better. It was about 6 weeks for DH when he turned the corner.
It's like having very bad sunburn inside your throat, plus all the other side effects.
I wish him well, & hope that he is like Rhod Gilbert, & is cured.

❤What wonderful people you are taking time to comment on my post ❤

Although I'm only a few miles away, my dad does live on his own so that's something to consider. I will mention these comments to him, especially about the feeding tube. Would you recommend that he watches the Rhod Gilbert documentary?

I'm not sure, to be honest. Maybe you should watch it first?

Good shout, I'll watch that before he has his first treatment session. 🌻 He's decided to do the clinical trial so will have more appointments etc.

It's very moving but difficult to watch in parts.
Seven weeks of radiotherapy will be tough on your dad. He will need you to take him after the first couple of weeks. For DH the last two weeks were the worst, and then the 4 or 5 weeks after that. Reassure him that it WILL get better (that's one of the positives from Rhod Gilbert's documentary).

Thanks @Radiohorror. The hospital car park is chaos after 10am but fortunately a colleague lives about 5 mins walk from the radiology building and has said he/we can use his driveway. This will make a big difference. We're about 30 mins drive from the hospital and between me, my brother and my uncle will do the lifts.

One of the discussion points I had with my dad was that if he went on the trial it would mean an additional week of radiotherapy (the 'traditional' treatment for him would have been 6 weeks). I know he doesn't realise how tough it's going to be :( his throat has been sore ever since the biopsy 3 weeks ago and this is going to be much worse. He did enjoy a can of ginger beer today (which was recommended on a different thread here). DS14 will spend the afternoon with him tomorrow (they're very close).

I've suggested that he should have a hospital bag ready, just in case he needs to suddenly go in.

@Theonlyoneiknow my DH went through this treatment in 2019.
It really is tough, I'm sorry.
He's very well now and can eat most things but still struggles due to a lack of saliva (the treatment destroys saliva glands).
He lost a LOT of weight, by the last couple of weeks, he was so sick that he could only sip water and was reliant on the tube feeding.
As I think others have said, as the effects are cumulative, the worst part is actually post treatment.
However, he did it, came through it and is recovered.
If there are any specific questions I can answer, ask away.

Your poor dad :0( you sound like an amazing family. Its really hard when your parent doesn't want to fully disclose. But I'm so glad he has come round to the facts. You need to be mindful to take care of yourself too now.

MY DH had very similar in 2021.
He's cancer free and very well now.
It was a really tough time and I really think the feeding tube saved his life - he couldn't swallow for a couple of months and survived with a milkshake drink called Fortisip which he had through the tube. He suffered with lots of mouth and throat ulcers which were terrible.
He had 7 weeks of radiotherapy and 2 lots of chemotherapy. Treatment finished at the end of October and he was very poorly for about 2 months after that.
Unsure if this helps, but we watched the Rhod Gilbert documentary and both agree that DH was much, much more poorly than Rhod appeared to be.
If I can help with any questions do please ask.

There is also à real risk of dehydration - it is not just eating food that can be à problem but swallowing anything.

Thanks again wonderful people for taking the time to comment on my post.

I had a chat with my dad today about the real possibility of a feeding tube and that we should be prepared for that, from what I can gather it sounds like a 'when' not an 'if'. (I will ask the consultant what % of patients end up needing a feeding tube). My dad is too old to have the additional chemo (hence being offered this phase 1 clinical trial) and he will have a heart scan next week to make sure he's good to take the trial drug.

As his throat is still sore from the biopsy he can't eat a wide range of foods but he did enjoy a McDonalds milkshake and fries today (another recommendation from mumsnet!)

Drinking the milkshake was also a good swallowing exercise!

@Theonlyoneiknow I commented earlier and have just seen your update.
In relation to the feeding tube, I would 100% say that, even though you can't imagine this is necessary when treatment starts, you would have to be very lucky indeed to get through without this.
My DH was just so exhausted and fed up and the smell of food made him sick, in addition to the actual pain and inability to physically swallow, which made him rely on the tube.
Your post had me thinking about his recovery and for timescale, if this helps, his treatment ended in early November and that Christmas he was able to eat some very soft vegetables and mashed up potatoes with a lot of gravy.
By March he was back at work, working from home, on a phased return.
Was he given special toothpaste by the hospital?
Buy very soft toothbrushes to avoid hurting a sensitive mouth.
Also, make sure he always has water with him.
Very best of luck.

@Theonlyoneiknow How are you getting on ?

Hi! So, my dad has been having extra tests to make sure he's all fit and well ahead of taking the trial drugs. He's had an extra CT scan and ECG. His kidneys have flagged as borderline so they require further investigation before he will be accepted (or not).

His throat has recovered since the biopsy so he is making the most of this short window while he can eat relatively normally and trying to get the calories in, as he last lost 8kgs in the past few weeks. He will start radiotherapy next Monday 12th. We are working on getting everything set up at his home for him in preparation for him being exhausted and unwell and having a hospital bag ready.

We celebrated his 80th birthday at the weekend which was lovely, so lots of cuddles with the kids before things kick off next week.

If your dad has private dental insurance he may be able to make a claim on it for the cancer.
My DH recently had tongue cancer and was able to claim a lump sum from his DenPlan dental insurance because the cancer was in his mouth (I think it was about £4k).

Hi @ruby1234 I will ask him, thanks! I know his dentist is private but don't know if he has dental insurance. He had to have quite a bit of dental work done recently ahead of the radiotherapy (extractions and fillings were done at the dental school and crowns were done with his own dentist).

Hope your DH is recovering well @ruby1234 🌻

Yes, he is very well thanks. 2 years 'all clear'.

Hi! Thought I would give a little update on my dad.

He's had his first week of radiotherapy and clinical trial drugs. Six weeks to go. He's starting to feel tired and has a dry mouth, still able to eat small meals but I think he will struggle soon. He said the radiotherapy mask isn't too bad (his job used to involve very claustrophobic work spending weeks in a diving chamber/wearing a mask so it's not as bad as that was).

He lives on his own but I have asked him to consider coming to hang out at my house, at least during the daytime as I or DH can easily WFH (I think he will need peace in the evenings and it's chaos in my home once kids get back).

He was telling me that he saw someone today ring the end-of-treatment bell. I had to pretend to get the washing as started crying when he said that. I said that will be you at the end of March, and he said "I hope so".

I feel like the calmness has gone and we are now ramping up for a tough few weeks, and I am scared how painful/awful it will be for him. Just have to keep focused on the end of radiotherapy and the time spent after it's finished in recovery. He is having lots of extra appointments and check ups due to the phase one trial.

You sound like an amazing daughter and a real credit to your dad OP. The biggest of hugs to you

Hi! A wee update on my dad.

Things are tough. He is now halfway through week 4 of radiotherapy. He will have 7 weeks to do in total (an extra week due to the clinical trial). This week he went on a low-dose pain relief patch which he needs to change every 3 days. He's lost a lot of weight and is thoroughly fed up :( He's still walking about although very tired. It's hard to see him like this, he looks so frail :(

The family are sharing the hospital journeys and I go each Monday to his consultant/clinical trial check-in. They haven't mentioned a feeding tube yet but I think my poor dad now has a mental block about trying to eat and swallow food, despite the pain relief (which he says isn't doing much). He's managing those Esure drinks and that's about it. I guess they will up that at his next review.

Whilst I know he wanted to do the clinical trial it's hard knowing that means an extra week of radiotherapy for him. He asked the nurse if he could stop for a while, which we all know he can't.

His boiler broke last week and it leaked all over his lounge floor. He now has no heating and it has ruined the carpet so needs to replace both of those :( He's had to move in with my mum (so his ex-wife) which is a whole other issue, as they separated 40 years ago! We do have space but there's no way he would cope with the kids and their chaos in our house, no matter how much he loves them!

My poor wee dad.

Reading earlier messages from you guys, where you have been with someone through this and they are now much better gives me hope.

He watched the Rhod Gilbert documentary (he wanted to) and said he's glad he did. I know he has his eye on ringing the bell - Good Friday!

Hope everyone who took the time to comment is keeping well 🌻

What a hard time of it you’re all having. My DM had throat cancer which hadn’t spread. This was back in the 80s. She responded well to the radiotherapy but goodness yes it is brutal. There was no offer of tube feeding which I think would have helped take the pressure off her needing to keep up her food intake. She was very thin to start with and couldn’t afford to lose weight. I used to go round every day and encourage her to keep taking strips of fortisip. She was never one to complain but she really struggled. But now with more pain control options and also the option of tube feeding should it be really painful to swallow, things sound to have come on in that regard.

The main thing that helped my DM through it were daily visits and taking DGC round for a while after school for a while most afternoons. It was a positive focus and cheered her up. Also if your DF can eat, to let him have whatever he most fancies regardless of nutrition. I didn’t bother with 3 meals but just filled the fridge with anything she thought she might fancy - mainly custardy smooth desserts, ice cream, milkshakes. She often just had a few spoons of something and a few hours later I’d ask if she could try a bit more. When she got past the most painful stage I still didn’t bother with set meals but just tiny helpings of runny mash made with cream, butter and topped with melted cheese. Mash and gravy, milk puddings, crème brûlée etc. smooth food was best and nothing acidic, bitty or dry. Just stuff that slips down easily.

I really hope your DF decides what he feels is best for him. He sounds to have wonderful supportive family around and that is the very best pick me up and coping device. Wishing him and you good luck.