Diagnosis

Hi Bigdude67 

There is a search function at the top of the page. Hopefully this link will take you to some of the more recent posts to read before somebody answers you community.macmillan.org.uk/search

Good evening Bigdude67, i have never had cancer in this area mine were in the lower jaw and neck, its suprising how many different areas of the head and neck are vulnerable to cancer but the cure rate and recovery have improved greatly since my last cancer in 2010 especially with micro and robotic surgery plus new chemotherapies/ radiotherapies. I wish i could offer better advice, wishing you all the best with your meeting at the hospital, take care.

                                                                        Chris

Hi Big dude. I have a friend who like me is almost 5 years post treatment for nasopharyngeal cancer I met him in my first day of treatment he also had same treatment as I did 35 radiotherapy and 3 cisplatin chemotherapy. He followed a similar path to me treatment wise m he returned to work a manual labour job 6 months after treatment finished. He’s happily living his life. Yes it’s rare but also curable when caught early..keep off Dr Google yiu will scare yourself even more than yiu probably are already. Ps my friend not on here he doesn’t do social media. 
Hazel  

Hi. Yep unfortunately I have / had this cancer. Diagnosed in October and now 10 weeks post treatment and recovering really well. Find out if it’s gone in September. There’s an awful lot to say in tes of what to expect. The side effects of radiotherapy will have the biggest impact and the whole process of treatment will take you through a world of ups and downs. But.. I’m here now feeling good d positive. Two stone slimmer and looking good for it .Please ask me anything and I’ll happily talk through my experiences. 

Alex

Thanks Alex. While I wait for treatment to start, my mind is full of all sorts of questions. Currently I feel absolutely fine (except for a painless lump in my lymph nodes) and work full time running a homeless hostel. By what I have read it looks like I have got 7-8 weeks of Radio/Chemo therapy. Whilst going through that is work out of the question? and post treatment what is the timeframe before work can be considered. I know everyone will be different but just trying to get an idea of what I might expect. Neil

Hello again. 
I was the same, no symptoms from the cancer itself and a lump on my neck. It’s strange that the treatment makes you rough before getting better. 
Id say in all honesty work is out of the question. I started treatment in January and am starting work again in September. I have opted to take a bit more time off to fully recover and spend time with the family over the summer so you maybe looking at a 6,7,8 month period of treatment and recovery. Again I’ve been pretty good from recovery week 6 ish but things will keep coming up like days of extreme fatigue.

With regards to treatment there’s a run up, you’ll get you teeth checked, I had to have one removed that was buried away I had no idea I had it. I was fitted with a PEG this is a stomach tube from which to feed yourself externally directly into your stomach. I hated it at first but it became a lifeline mid treatment. This is a couple of days out the office so to speak to get it done.

my treatment was 6 sessions of chemotherapy and 35 sessions of radiotherapy everyday. This period is when you’ll certainly need time off. If you’re close to the hospital it’s a little easier but will still take time out of your day. 3 x chemo sessions were a full day the others 2 hour session. I’ll be honest, chemo makes you feel pretty rotten for a few days so again working would be difficult. I thought I was pretty tough but it becomes emotional as well. 

I’ve forgotten the other bits I was going to say but again ask away. 

Bigdude67 said:

By what I have read it looks like I have got 7-8 weeks of Radio/Chemo therapy. Whilst going through that is work out of the question? and post treatment what is the timeframe before work can be considered. I know everyone will be different but just trying to get an idea of what I might expect. Neil

Hi Neil. From week 4 you might well be in a lot of discomfort. 
I’m retired so work didn’t impact me. 
Judging by what others have said 6 months is a reasonable time to be aiming for a phased return 

Hi Neil

I had jaw cancer so different to yours. I initially tried to work through while having radiotherapy but after a couple of weeks had to go on sick leave as I just couldn't go on because of the side effects. You can certainly try but be prepared that you may have to make a hasty departure as I had to. I found for me it was about 3 months after radio finished that I was able to manage a phased return to work. I did not have chemo and the radio was centred on my jaw so things may be different for you.

Wishing you all the best for your treatment.

Lyn

Beesuit said:

There is a search function at the top of the page. Hopefully this link will take you to some of the more recent posts to read before somebody answers you community.macmillan.org.uk/search

Bigdude67 

Sorry about this. I did a search for you which is linked but Macmillan has now done something with the site and this search function is unusable for beginners, so don't even try

Hi Bigdude67 

I also got diagnosed with NPC and had 7 weeks of chemoradio and am currently into 7 weeks of recovery post-treatment.

How you go through treatment and post, side effects etc are really down to the individual. Age, weight, pre-existing med conditions they all make a difference. 

In my experince first few weeks of treatment were generally fine but 4th week I started feeling RT side-effects really kicking in. For me the most bothering was taste and dry mouth, eating will become very difficult but unless you have very sore throat you need to keep eating to limit weight loss. I was able to avoid being tube-fed but everybody is different. Lost 3kgs in total  

As they should have told you side effects peak week1/2 post treatment, I peaked the middle of 1st week and had a steady recovery afterwards, especially taste and ability to eat. Skin around neck recovered pretty quick, just make sure you are putting soothing cream all the time especially when your skin starts to break. 

Right now I have 

1) dry mouth - not too bad, but it will take a time to recover

2) taste still different but way better. 

3) dry and ‘tight’ nose. It got better and mostly fine now during the day when I am upright but gets blocked at night when I lay down and impacts my sleep. Nasal rinse helps. 

4) some fatique. Not too bad but body needs time to recover. 

I hope you are doing well as much as you can. Keep your head up, its generally a very radio sensitive cancer and responds well to the treatment and with better RT tech now side effects are less compared to past. It is a heavy- duty treatment but recovery is quick for most of the pressing side effects. 

Any questions shout