Radiotherapy

Hello Fran, I don’t have the same type of cancer as you but I will be having a course of radiotherapy to my neck/mouth with added chemo as a bonus. Like you I was undecided at first as the side effects seem so unpleasant. But there are plenty of people on this site who have done it and survived and have a wealth of knowledge and tips to make it easier for us “newbies.” In the end though it was the statistics that convinced me. My oncologist said that if I did nothing there was a 50-55% chance that the cancer would return. Radiotherapy would lower that to 30-20%,  with the chemo (in my case) adding another 5% as well as making the radiotherapy more effective. Basically my chances of remaining cancer free after 5 years are increased from (at worst) 45% to at best 85%. If I was in my 90’s I would probably not put myself through it, but I am only 61 and still have places to go and things to do! I’m having my mask fitted tomorrow and probably starting treatment in a couple of weeks. I’m eating as much as possible now to try and lay down some reserves. I am deliberately avoiding Google too much but reading a lot about people’s experiences on here and they do seem to vary enormously. Ultimately though I have faith in the team that is treating me. I know they will do everything they can to minimise pain and discomfort and the fact that I will be seeing them every day reassures me that any problems can be solved quickly. There are some really great people on here who have written blogs describing their experiences, Beesuit and Radioactive Raz spring to mind. I’m sure they will be along in due course if you want more details about the process. Hope that’s helpful. 
Good luck whatever you choose to do xxx

Hello Fran

I had an SCC lump in my neck (secondary as primary not found) and a neck dissection with 2 lymphs looking suss. 

2 x Chemo and offered 6 weeks of radiotherapy. My consultant told me that I could elect just to have RT to the 1 affected side, but also said if I had no RT, the cancer would come back. So I did feel as if RT  was my only option.I had more to the affected side and a lower dose to the other. I was also told about loss of taste/weird taste/loss of saliva and I would probably need a tube. RT wasn't actually too bad took about 5 minutes and not scary. Chemo was ok too (week 1 and 5). The worst is change to eating drinking.I was ok until week 3 then, excessively salty or too sugary tastes soon became metal. This lasted around 2 weeks before it settled back to something a little more pleasant. I managed the whole treatment without a feeding tube, lost around 5lb in weight and had 2 mouth ulcers which I coped ok with paracetamol. I am now 10 months post treatment and seeing lots of improvement to taste, what I can eat, saliva etc. It is hard work at times but doable. As Knitty says, all the best with your decision. We are all different as was my cancer to yours but, if I can help anymore, do ask away. By the way Knitty, I am 61 too, weird.

HinFran I had 35 radiotherapy sessions and 2 19 hour chemotherapy sessions. I won’t lie thebtrratmentbus pretty hard and the recovery can be challenging but it’s far better than the alternative I am niw 2 years post radiotherapy for tonsil cancer with several affected lymph nodes and living my life. I have a blog  where u give an honest account if my experience www.radioactiveraz.wordpress.com justbremember nit everyone gets the same side effects ,dry mouth is about all I am left with plus some meats are difficult to eat. 

Hope this helps ask any questions Hazel 

Hi Knitty sorry seem  to have missed your earlier posts , yes I too was 61 when I was diagnosed. Thanks for reading my blog any help just shout out or send friend request if yiu want personal chat. Lo,that sounds so weird g

Hazel positive mental attitude got me through it x 

Hi Fran, my first post here was me considering refusing radio! 

I am now one week post treatment and am glad i went through with it

Treatment is not easy, it does make you feel poorly (i had 30 radio, 5 chemo)

But one week after treatment i am already starting to manage soup etc and feel ive turned a corner...i never needed a tube to food, though i did end up on a liquid diet.

Others might need a tube to help feeding (we all react differently to treatment) but its a temporary thing to help you.

The pain can definitely be controlled, for me fentanyl and morphine had it very well controlled

Any more questions, please ask!

Hi Fran. 
I was 67 when I started 30 days of radiotherapy for base of tongue cancer. 
I am 20 months post RT and largely back to normal. A few niggles but nothing that is difficult to bear. 
Radiotherapy is a challenge and I was quite ill but it’s doable. 
I had to have a nasogastric tube placed after three weeks as I was too sore to eat. Timely analgesia, adequate nutrition from Fortisips and a supportive loving husband git me through the worst. 
Oncologists are fond of telling us that we start to feel better when the radiation stops two weeks after the last treatment. This is a lie. It takes longer. For me, I turned a corner six weeks after and recovery was fast after that. Six months after RT finished I could eat a steak. 
I still have a dry  mouth managed with acupuncture and chewing gum and my taste isn’t what it was. 
Some people relatively sail through and manage without tube feeding. 
There are lots of people here who have survived and are thriving and are willing to help you along whenever you need support. 
You can PM any of us if you want to chat privately. 
Hazel has pointed you to her blog which is really worth reading. MikeO has one here on the forum and mine is here 
todaymycoffeetasteslikechristmasincostarica.com/

Hi Fran2

Pleased to hear your surgery went well.The symptoms you've been told about are very common with radiotherapy to the head/neck.  However, as has been mentioned, not everyone reacts in the same way and to the same degree.   The side effects generally begin a couple of weeks into rt and progressively get worse as the treatment continues.  Recovery can take several months.  Again,  this is very much dependant on the individual and some of the side effects can remain to a certain degree ie altered taste, drier mouth.

If radiotherapy is recommended to you and you decide to go ahead there are plenty of people on the forum who can offer advice and support with regards to products and pain relief they found useful.  

Good luck.

Linda x

Thank you all for your prompt response.  I'm now going to pick the bones from your comments so that I can try and appear half intelligent when I see my "Team" tomorrow and have questions prepared in writing for them.  Life would be easier of course if I could take someone in with me to help take in all   their comments  but alas Covid has put an end to that!  Que sera sera.  Everyone is doing their best.  

I'm grateful to hear all your comments from the coalface - so thanks again. On a positive note this is my first 'post' ever - so you can teach an old dog new tricks!  xx

Hi Fran

Best of luck with your appointment. I  had radiotherapy once in 2013 to the right side of my face when I was 59  and then in 2019 to the left side. My experience in 2019 was quite different to  the one 6 years previously which was a bit of a nightmare. They now can be much more accurate where they treat and so this time only my left side was affected instead of my whole mouth so I had much fewer ulcers. Also my taste buds not nearly as badly affected. Keep on top of the painkillers and get in touch with your team straight away if things are getting too hard as they are great at coming up with options to help. I did toy around with the idea of not having the radiotherapy but my doctor said it was my best option to beat the cancer along with the operation. Like you I had a lot of living I still wanted to do so went for it.

Good luck

Lyn

Hi Fran, my hospital are not doing PEG tubes due to COVID. I’ve been told I may need an NG tube instead for feeding but I will do my best to get as much in me as I can to try and avoid it, however if it’s needed then will have to use it. Plenty of folk on here have experience and can help advise you. Good luck x