Radiation treatment protocol

Hi Sacha. Sorry to hear of your diagnosis but it seems that you are quite a way along the road and you have done brilliantly well to have got so far and managed to eat. 

The decision on how many weeks of RT you get depends on the clinical scenario, rather than any regional protocol variation. I'm no radiologist but I've noticed that those folk who have affected lymph nodes not removed seem to have that extra week. Some lymph nodes are simply not removable being too close to vital nerves and vessels. It really is important to get the metastasised cancer cells or they act as a seed to spread the disease further.

Having said all that, I guess Covid has had an impact on theatre access 

I had only six weeks but I was using my NG tube from the end of week three. I remember my last week. I felt the same as you. I've just had a look at my blog for that week. Take a look at the link at the end of my post. I'm a coward but I got through it and today I am 2 years out of treatment and living really well.

I like you discovered how tough the treatment is but I religiously took the pain killers and put my head down. I largely slept through those first two weeks after I finished but by six weeks I was eating well and had turned a corner.

It's crap!!! but worth it.

Good luck...you sound so upbeat just go for it.

Thanks Dani - actually now you mention it (so easy to forget this stuff- for me anyway).  Early on I remember them saying that the lump is lying very close to a carotid artery, although they have said that they may need to remove the lump in the future - so it is possible to operate on it but maybe they have weighed up the risks.

My son is going to his Dads for 2 weeks when my treatment ends.  Having to home school alongside treatment has kept me busy I think which has helped (as well as being infuriating at times) and although I am not looking forward to the pain, I am looking forward to being able to just sleep as much as I want to.

I have read your blog Dani - yours and RadioactiveRez - they are both so helpful xx

Hazel had the extra week. We are both old ladies....I can see her shouting "oi!' at me now 

We got through. Morphine ( and Laxatives) is a great discovery. 

Hi sasha

Firstly you have done amazing getting this far and still eating well- i did manage to stay self feeding, but it was really bad from the end of week 4

As for radiotherapy and the number of weeks, i didnt have surgery, and i had spread to one lymph node- and i had 6 weeks, not 7.

I did ask my radiographer how they decide on the doses etc, and he said there is a fair bit of maths involved - so i imagine that is the case with you too, that they have simply calculated that is the best dosage to give you a complete response.

I totally understand dreading the last week, the last week for me was hell.

Recovery is steady- like dani i slept a lot in the weeks following recovery, but that passed.

Hi Sasha. Thus us Hazel I had 35 radiotherapy sessions reason bejng I had a pesky lymph node that was too close to spinal cord to operate on. To start with I had 2 lymph nodes but while waiting they spawned into several. The decision isn’t a regional one it’s a joint one I’ve that oncologist snd radiologist s who are far clever than me . I also had 2 out I’d planned 3 chemo . Yep Dani I was 61 when diagnosed  also h p v positive remember the h p v status is good . I got the results we all want after 18bweeks post treatment. Yes the last 2 weeks are brutal but fix on end resuktsa. Remember treatment continues to work before a few weeks after. It’s imperative to eat and drink as that aids  recovery   I had n g tube  ask I had mine end of week 3 then a further 3 weeks afterwards. Make sure you keep on top of pain killers 

good luck kerp in touch Hazel 

mos if you burn the hospitals are equipped I had a huge polymer bandage to aid recovery. 
hazel xx

Thank you for reading our blogs sorry meant to put that 

Hazel 

Thanks Trev - that makes sense.  Well my last week was week 6 so I've already been past your last week - if that makes sense !  And I am surviving so I have to remind myself I will survive.  Funnily enough this is one of the songs that plays in the radiotherapy room while I am having my treatment.

Hi Hazel

Thank you.  I'm actually 56 - I had my son late !  

The lovely nurse on my team has been putting a special dressing on my neck for the last few days and I now have the same stuff at home for my partner to try and put on - its like a silicon pad with gauze under which is supposed to help with healing. I'll ask about the polymer bandage.

And yes I will focus on the end results - so looking forward to Spring this year.

Hi you’ll get there just don’t rush baby steps is the way. Maybe next week during treatment they may wrap your neck in hospital grade  cling film if they aren’t already. 
My neck burned pretty badly but as long as I slap factor 50 on it I am fine it doesn’t stop me. 
Keep in touch Hazel 

P s age is just a number  xc

Hi Sasha,

To answer your question about the difference in weeks of treatment - it’s just different protocols delivering the SAME dose. Some Oncologists prefer to give the dose (usually 66 or 70 grays of radiotherapy) over 7 weeks, and some prefer to give it over 6 weeks. It’s the same dose, whether given over 6 or 7 weeks. They just give a tiny bit less each day if it’s over 7 weeks.  Slightly different if given after neck dissection surgery - slightly lower dose. Your treatment will be tailored to your precise disease, but is essentially a standard dose of radiotherapy. I also had 7 weeks of radio and 3 doses of chemo, sounds like you’re having 2 doses. The 6 week people tend to have weekly chemo, but a lower dose of cisplatin. And yes, 6 weeks is the more common protocol, but shouldn’t make any difference. Really good luck for the last week - I won’t pretend it’s easy, but you seem to be doing fantastically well - hang in there, it’s nearly done. Advice - ask about everything in the next week or so, especially if you need help with pain relief - there are lots of options. Don’t suffer with pain.

Thinking of you,

Hilary