When head and neck cancer returns after major surgery and extensive radiotherapy...

Thank you Beesuit. 
I was diagnosed with Head and Neck Cancer 2 years ago, I had neck dissection surgery to remove my left jaw, lymph nodes and flap fitted from my left leg. I then had 33 Radiotherapy sessions and 2 Chemotherapy treatments. I have really struggled with pain and eating despite being on Fentanyl and Oramorph, I had a check up with my Radiotherapy Specialist last week and they advised I was on the wrong pain meds, I am now on nerve blockers but it has really knocked me out!! Hopefully after 3 weeks the pain will be manageable and I can reduce the Fentanyl. During my appointment they mentioned that it is 2 years after treatment when your chances of cancer returning is reduced, this is just another thing to worry about, just wanted to know how they diagnose for a second time, as I know early diagnosis is critical. Thanks for your support.

Hi again. It’s all about statistics. Statistically most recurrence is in the first two years so when you get to that milestone your chances are pretty good. There are outliers though I’m afraid. 
Diagnosis usually depends on us reporting something NEW. This is why we are monitored for five years, particularly closely for two. It’s important to recognise what’s normal for you and to check yourself regularly without being obsessed with it. 
Report any worry to your CNS. I’ve been seen twice out if sequence and both times there was no evidence of cancer. 
We do worry but the worry gets less acute as time moves on. It’s the way of things. My oncologist told me I would just have to live with it. He’s right. 
There us an excellent essay by psychologist Dr  Peter Harvey on what cancer does to us. It’s worth a read 

www.workingwithcancer.co.uk/.../After-the-treatment-finishes-then-what.pdf

PS. Neuropathic pain is really difficult to manage according to a friend who has it for other reasons. If you can get referred to a proper pain clinic it may give you a good chance to live with it. So sorry you have been left suffering g so long. 

Hello Dani thank you for your guidance and support. I am really hoping the new pain meds start to work, it would be nice to be pain free after such a long time. I think there needs to be more support in the first few years as cancer patients live in constant fear that cancer will come back and even loved ones start to think every ache and pain could be cancer. Thanks again 

Yes I agree. Some of us struggle badly and there needs to be more resource.

Some hospitals have excellent late effects units but sadly they are far a few between.  
Macmillan provide free counselling if you feel you might benefit. 
Have a look here 

www.macmillan.org.uk/.../bupa-counselling-and-emotional-well-being-support

Hi Mandrew

As Dani has said my case is somewhat off the scale of normal H&N cancers.  What I can say is that the "return" was found by diligently going to the follow up appointments and it was visual examination by my consultant that found it.  I knew nothing of the tumour.  It was then positively biopsied as the same cancer, but when I went for a partial glossectomy a few weeks later it had disappeared.  And that is where I am now some 26 months later.  I get the occasional scare that needs investigating but so far nothing untoward.

Thanks Peter, appreciate the additional information. I am struggling a lot at the moment due to the changes to my pain meds last week, however it was a real blessing that I got to see my Radiotherapy Specialist as she was amazing from day 1. However it is worrying to think cancer can come back when you have been through so much already. So pleased you are in a good place yourself. Thanks again for your reassuring words.

Hugs from me too. Marion x