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

[whatsitabout79]

To me it's they are querying cancer but not confirmed but I'm not a medic

[Asifiwouldnt]

They are querying a squamous cell cancer but they won’t have the histology from the biopsy for a while yet so this doesn’t tell you more than you already knew from the scan

So sorry you are going through this. Really
hope his outcome is good

[Theonlyoneiknow]

Thanks all, it's good to have that info to hand. So I guess the PET scan indicates the SCC (or some form of cancer) and the biopsy results will confirm/deny that.

[Theonlyoneiknow]

He has a golf ball sized lump in his throat so, it's not unsurprising news :(

[Asifiwouldnt]

@Theonlyoneiknow

Thanks all, it's good to have that info to hand. So I guess the PET scan indicates the SCC (or some form of cancer) and the biopsy results will confirm/deny that.

Edited

Yes exactly that
It could still be benign or a low grade malignancy though so don’t let your mind wander too much until he is given the histology but it’s always good to be prepared the outcome may not be as hoped for.

[Theonlyoneiknow]

Thank you. I saw him today, he is really struggling. He is finding eating anything impossible even yoghurt and can only manage tiny sips of water. I'm so worried for him. They warned him that 3-5 days after the operation would be very painful but it's so tough seeing him like this. He tried to hide it from the kids and turned up like he does every Sunday to take them for a walk around the village.

[fourelementary]

Oh bless him, he sounds adorable. I hope he can get some answers soon and that it’s treatable.

[Theonlyoneiknow]

Thanks all. He was admitted back into hospital today as hasn't been able to eat or drink anything since the biopsy procedure :( I'm glad he's back in there though and getting help.

[thedementedelf]

So sorry to hear he's struggling after the biopsy. I hope he gets answers soon.

[Themermaidspool]

Hello lovely.
Sounds like they are almost certain HPV positive oropharyngeal squamous cell carcinoma SCC.
If he's had MRI and PET and staging CT (if required not always) they should know if there's any lymph nodes and if he also needs a US scan check / biopsy. It sounds like everything is well set for MDT discussion after which you will have a plan.
In the meantime the best bet for symptoms is the cancer nurse specialist.

[Radiohorror]

I hope your father feels better soon. If it is P16 positive SCC this usually responds well to radiotherapy if surgery isn't an option. Keeping everything crossed for you. If he has to have radiotherapy they will probably implant a tube so he can have liquid food straight into his stomach. I have some experience of SCC of the head & neck , so if it turns out to be this please let me know if I can help in any way with information or advice.
How old is your father?

[Radiohorror]

PS this is what Rhod Gilbert had - he made a very moving documentary about his treatment.

[Theonlyoneiknow]

Thanks everyone, I am really touched by you all taking the time to reply.

He will be 80 later this month. Aside from this he has been fit and well, one of those "if he can do something to help someone he will". He sees his grandkids 2-3 times a week and they often go for long walks round the village with hot chocolates and talking about his memories and family history of where we live. He's always doing DIY bits and bobs. Kids don't know what's going on yet (they are 11 and 14).

I will check out that documentary, thank you! 🌻

[Asifiwouldnt]

How’s he getting on @Theonlyoneiknow ?

He sounds such a lovely Dad and Grandad.

It’s so hard seeing someone you love in pain and frightened. Hope everyone is getting the support you all need.

[Theonlyoneiknow]

Hi @Asifiwouldnt So he was admitted to hospital on Monday as couldn't eat/swallow anything including water. He was there until today when he was discharged as could swallow those powdered calorie drinks so things are better on that front.

He showed me his notes which said - Patient had a robotic left tonsillectomy and tongue base mucosectomy because he has been previously diagnosed with SCC P16+ with unknown primary"

(I didn't know that he had actually been previously diagnosed with the SCC, I thought he was waiting on biopsy results - there is a grey area now between how much information he is sharing/not sharing). :(

It seems that he had his tonsils out when he was 6yrs old and they had left some behind which they removed. His case will be discussed by the head and neck team on the 17th. I'm not sure how long it usually takes from the team meeting until he finds out what the plan is? He said that there was no cancer in the big golf ball sized lump in his neck but I really don't how much he is trying to hide from me!

And, to add to matters he told me that he is back in the hospital on Monday to see a completely different consultant about an issue with his stomach that was picked up on another scan - I had no idea about this and am really worried. My dad won't say much to me :( I know he doesn't want me to worry but I really want to help him.

[Asifiwouldnt]

Oh I’m so sorry that all does sound like a lot of half bits of information for you to try and work out. Do you think your Dad does know more and is hiding it or is actually quite confused and/or desperate to only hear the positive?
Would he let you go with him to the next appointment and stay in the room for the consultation?
It would be typical for the specialist nurse on the team to phone him the day after the MDT to discuss the plans from outcome but by no means will it definitely follow that timeline in my experience.
Glad he’s able to get some nutrition in him. There’s nothing that magic in those drinks other than a decent amount of protein, fat etc so if he wants to enjoy other things instead of one or two of them like a nice milkshake blended with ice cream or fruit and and ice to make it cool etc then I would be offering that too. Those drinks can get very samey and cloying after a while.

Hope you all get a clearer picture soo. And that it’s news you can move forwards positively with.

[Theonlyoneiknow]

🌻thank you 🌻 He's happy for me to come along to the throat appointment and take notes/ask questions so that's good. From his reaction and showing me the letters I think he's trying not to think about it and so your latter suggestion is probably spot on and he's desperate for positive news. He isn't the type to ask questions but just accept what he's told and wait until the appointment. He thinks it will be radiotherapy (co-incidentally my colleague told me today his wife works in that department in the hospital). He's nearly 80 and i'm not sure how hard on him that will be.

Great idea on the milkshakes, thank you! He only lives 3km walk away or the drive is less than 10 minutes so I am very fortunate in that respect. I'll keep you posted and thanks to you and everyone who commented. It really helps to write it all down.

[Radiohorror]

DH had about 3 weeks between the meeting & starting treatment. There are things like positioning scans & probably a feeding tube to be implanted into his stomach (that may depend where exactly the cancer is, I'm not sure).
Don't underestimate how tough the radiotherapy can be for some people, he will need a lot of support

[Theonlyoneiknow]

Hi All,

I just wanted to give an update. You have all been so kind in your replies.
So, they have told him the cancer is contained in several nodes in his neck, it hasn't spread, and is curable. If treatment is successful he will likely die of something else completely unrelated.

He has now had several teeth removed (ouch) and will start radiotherapy in 2 weeks. They have emphasised it will be very unpleasant and highly painful, he is unlikely to be able to drive himself to appointments after the first 2 weeks (my brother and I are fortunately quite nearby so can help). I went to the consultant appointment with him (very glad I did).

He is being fitted tomorrow for his mask - on his 80th birthday!

Additionally, they have offered him a clinical trial, phase 1 (based on his age and in good general health). The document makes for quite scary reading though and he's unsure what do to.

The recovery from the throat biopsy alone was really though and only now after 3 weeks is he able to eat mashed potato type foods.

The trial is the ADEPT-DDR. They have said he can stop at anytime during the trial if side effects get too bad (my concern is that they will be bad enough) but alternatively he could feel not as bad. But he wouldn't be able to switch to a different radiotherapy machine, he would need to stay on the "old" one. So I am wondering if he's better not doing the trail and using the "new" machine. No idea :(

A trial of radiotherapy and targeted treatment for head and neck cancer (ADePT-DDR) | Cancer Research UK

[Asifiwouldnt]

What a positive update. I’m so glad he is curable and with lots of support I’m sure he will get through treatment

Trials are such a hard call. In many ways it’s for the good of others in the future (and without other patients doing the same in the past none of us would benefit from the treatments around now so it is important to consider our role) but also some of the trial treatments will be shown to be of benefit to those who enrolled too.

wishing him all the best

[Theonlyoneiknow]

Thanks @Asifiwouldnt My dad's gut instinct is to do it, as he said "why am I paying a monthly direct debit to cancer research if I'm not willing to actually take part"

[FirstFallopians]

I’m glad the news sounds positive, OP!

My mum had very similar (cancer at the base of her tongue, some local lymph node involvement). She is well out the other side now thankfully.

I just wanted to say something to maybe prepare you for how difficult the treatment is in that particular area. I know your dad’s team have touched on this already, but there’s no two ways about it, it’s brutal.

I’m not saying that as a warning, but more like it’ll seem bleak in the middle of it all, but try and trust in the process. Encourage him to be honest with his drs and therapists about the actual level of his discomfort and any side effects as there are things they can do to help.

Hope all goes smoothly for him.

[RampantIvy]

This sounds very similar to what a family member has had. She had tonsil cancer and had several lymph nodes in her neck removed, followed by 7 weeks of radiotherapy.

The treatment was tough, but she has made a remarkable recovery and is cancer free.

Wishing your dad all the best

[ComfortableAtLastTookLongEnough]

I had both Immuno therapy and radio eight years ago.

I took my food through a tube for six months, even now it is a soft food diet.

It wasn’t pleasant, but it is doable.

[Theonlyoneiknow]

Thanks everyone. I have been doing a lot of reading and there is no way to sugar coat this treatment is there. The consultant said to my dad it will be very very painful (hence the opioid patches) but I don't think it really sunk in TBH. My poor dad couldn't look at me at this point as I'd started to cry. He's been living on his own now for a long time (separated from my mum) and I know that taking help for him is difficult as he's very independent. The consultant did mention tube-feeding if eating becomes impossible, and that it would mean a weeks stay in hospital while he learns how to use it (if it comes to that).

I spoke to him about the harshness of the treatment today and said that as the radiation builds up he will start to feel worse, in pain and exhausted. I will get one of those calendars where you can cross off the days so it will hopefully help him see how close he is to finishing. He said he didn't even consider not having the treatment. It's been very hard watching him recover from the biopsy so I gently said to him that the radiotherapy treatment will be worse but he needs to let us help him, and we'll get through it.

The clinical trial however would mean 7 weeks of radiotherapy, rather than 6 weeks.

If anyone has any practical tips to help someone get through this I would be very grateful. After being such an amazing supportive dad to me I just want help him the best that I can.