Update.....finally confirmed tonsil cancer

Hi welcome to our small community group sorry you’ve had to for yourself in here on behalf of you hubby I am next month 3 years post radiotherapy for tonsil cancer with several affected lymph nodes.  
I am living my life to the max.

• Your hubby  has age on his side I was 61 when diagnosed fairly fit I had just cycled 1100 km in Spain. The treatment isn’t a walk in the park I was in treatment with a guy who was also a builder he thought he could d work through but after week 3 he couldn’t we are all different all he can do us listen t his body. If he is slightly built and they are suggesting a peg feeding tube seriously think about it. I had a feeding tube week 3 as it was impossible to get enough nutrition snd hydration in plus medication. 
  it’s a lot to take in. Take it in baby steps. As for chemo I took my oncologist s advise in the end I had 2 out of a planned 3. I personally took the view the more I coujd throw at the cancer the better. It sounds like h p v driven cancer with the odds that’s being quoted. H p v tumours do respond well to treatment. What the chemo does is help the radiotherapy which is the main part of treatment. 
  hope this helps Hazel 

Thank you Hazel yes forgot to mention he tested positive for the HPV virus, I think it's so much for him to take in and lots of people have their opinions but as his wife I want him to have everything they throw at him....we have such a long time ahead I want him with me for as long as I can, selfish i know and easy for me to say as I'm not the one scared our of my mind :-( 

Hi Bex, I remember you posting a couple of weeks back before all your husbands scans and tonsillectomy. At least they have found the primary cancer which is a blessing. I can't help you with any experience of chemotherapy as I managed to avoid it having no lymph nodes affected but I would in any case urge your husband to take the advice of his clinicians regarding treatment. I turned 67 half way through my RT and even at my age I would take that extra 8% believe me. 

We are all different. Some people manage to struggle valiantly through the treatment without a feeding tube. Others need one pretty quickly as the radiation takes its toll on the mouth and throat. Similarly recovery very can be fast with some people going back to work part time at six months after treatment ends and others limp along for a little while longer.

We have a forum member MarkEL who has written a very detailed account of his treatment HERE

Have look at that...there's lots of info on what to expect

We are all here to help you both through with tips and a shoulder to lean on so don't be frightened of asking any questions. None are daft. We do know how you feel and we can help.

Best of luck

Hi He can haves the first dose of chemo then talk it through with his team if he’s adamant he doesn’t want the chemo they won’t force it on to him. It is his body that’s getting  treated, you can talk with him but the decision is his to take.   Totally get where you are coming from, am sure when he’s had time to let it sink in he will talk it through with you. I was lucky I wasn’t nauseated at all with the chemo. I took the tablets given to me as directed after each treatment and I was fine. What I did do after my 2 nd dose my hospital give 3 large doses was talk with my hubby and the oncologist had we decided not to take the 3 rd dose. 
hope this helps. 
Hazel 

Thank you so much, already I'm finding these groups a god send and I def turn to u all before I would ever think of the dreaded Google!

I was were you are 10 months ago but 3 weeks ago got the all clear take everything the chemotherapy and radiotherapy I never got the feeding tube only manage to keep drinking on my own felt it was 1 less thing to get over. It will be hard but he can do it . It's a fight but don't give up best wishes 

Hi 

I had surgery, neck dissection, radio and chemo at 41 No tubes If there is any "good age" for chemo, 40 certainly is as the younger you are the easier it is to recover from it Plus as others say you can always opt out after first or second round If your husband would not experience immediate adverse reaction he is likely to go through the course Just makes you feel more sick, but radio would anyway so not much difference

I believe there is high probability that he would be able to work as builder again Not too fast though Now I can do rather advanced pilates which requires a lot of physical strength here and there There are some things which are off limits for me forever, but this is due to dissection not chemoradiation

Hi Bex,

Sorry you have to find yourself here.

I'm 16 weeks post treatment now and feel very much like I'm coming out the other side. I can forget about it a lot of the time now. Just turned 48, so a few years on your hubbie but was one of the youngest going through it at my hospital. 

Also had tonsils out, 6 chemo and 30 radiotherapy. I had to stop work because of the type of cancer, but have gone back now. My nurse said they had a guy went through it a few years ago and he kept working as a lorry driver all through treatment. I went with having a PEG. Hated it at first as I struggled, but was grateful post treatment as I couldn't eat for 3-4 weeks. The NHS is amazing, the teams really know what they are doing and had all the time in the world to support. I found chemo fine, like this whole situation we all seem to react differently, but so long as it was bearable anything to improve the odds. 

I'm gradually logging my experience in the blog section, 'Not This Time' if you want any more detail. 

It's not at all selfish to want him for many years, that determination will keep you both going when it gets tough. Being here for my husband,  granddaughter, nephew's and family has helped me keep a steely resolve to beat the beast. 

Take care, Ronnie 

Thank you ronnie it's so good to hear other people's experiences...still struggling to get full diagnosis, I read all these numbers and letters but don't understand them wish we had ours so I could investigate a little more x

 Hi Bex, I’ve been through very similar to your husband. I’m 66 though, a non smoker, good Bmi, blood pressure and a limited drinker with medium build. I had 30 rads plus 6 x Cisplatin. 
To be honest, the low dose Cisplatin ( your individual dosage is measured on body area) mine was administered as 40 mg/metre squared, was not the problem. It’s the radiation that builds up in your system that hammers you. I’ve read that if you get a minimum of 200 mg of Cisplatin in you while being treated it’s enough to react with the rads to produce a significant percentage (around 8%) increase in survival- so it’s a no brainer to take the chemo especially being young with a wife and 3 children.

As far as work is concerned, I’d prepare for at least 3 months off for him and then very light duties once sufficiently recovered. I’m not gonna lie, it’s a horrid thing to go through( but doable) he’ll need support and nursing throughout so be prepared. The chemo nowadays is not as horrifying as I imagined. They give you steroids and anti sickness pills that really work. I didn’t have a peg, mainly through pigheadedness, but I would advise it now, as eating becomes very difficult. Importantly though, the peg only need be used in the event you cannot eat normally, but needs to be fitted ahead of treatment apparently.

I myself am almost 5 months post treatment but still have side effects. e.g. dry mouth, poor taste and neuropathy BUT HEY I’m here with my family and can do more and more as each month passes. 

Sorry to be so direct, but it is what it is. I would advise him to take all the treatment, knowledge and resources that the Oncology team throw at you. Get it done and get on with living.

I, or any of the very knowledgeable ex-patients on this blog can be contacted for more support as and when you need us.

Best wishes, Tim (wanna play guitar)