Head and neck Cancer diagnosis for Mum

That’s excellent news it’s come back please can I ask you what the abbreviations are that you were diagnosed with? Thanks for replying 

Hi 

This link should explain Tonsil cancer staging....Stages and grades of oropharyngeal cancer | Mouth cancer | Cancer Research UK....

Peter

Thank you so much, what a minefield! 

She’s 66, smokes and drinks. She’s so miserable which is awful already. I’m not sure exactly which causes lack of taste. 
my mum has a Rig tube fitted and is now having Forsips shake things- 5 a day through it. She can still swallow but only a bit. 
I still am very worried that because she couldn’t have surgery to remove it that no treatment will get rid of it and all these months of misery and pain for her. I’ve given her lots of samples of foods, tastes along these last few weeks but sadly no longer. I tell her to eat for fuel to keep up her strength now. I take her  to most appointments at Leeds. 

She started with a lump in her neck in October, 

I’m so sorry you’re going through this with your mum, it’s horrific seeing someone you love the most in pain:( can I ask why they don’t remove the lump in the neck? 

has anyone in this thread had the lymph node dissection? 

Initially they thought it wouldn’t be good for her as she has a pacemaker fitted and chance of not surving the op, but since them saying that they found the other one in oesophagus so would’ve been hard anyway. 

Im not sure about dissection, what is that?  

Hi Here4mum,

I am now 5 weeks out of treatment.  I managed to eat until my last day of RT, but it was a struggle.  I then was g-tube fed for around 3 1/2 weeks before I felt I could start to try some soft foods.  At the 5 week stage I am off the g-tube for feeding but it is still easier to drink large quantities that was as swallow is still a challenge due to the ulcers in my mouth and throat, although they are getting better by the day.  I am now mixing soft "real" foods with additional Fortisips to get the calories in.

I lost my taste totally on the Wednesday after treatment ended.  In all honesty I would say that much of my taste has returned at this stage.  It is different to before without doubt, but I do know what I am eating from the taste.

Like your mother I love my food although it is my wife and one of my sons that are the great cooks in the family!  I am hopeful that when the ulcers finally go I can get back to enjoying food.

We are all different in our journeys and I am probably luckier than most with getting through the treatment and the recovery.  Hopefully your mum will have similar luck.

Good evening Here4mum, great advice from the others on here, I never knew where my primary was and what stage it was, and to this day i still do not know the main reason why because when I was first diagnosed in 2008 all I wanted to know was can it be cured. Most of us are the same and don't realise we have cancer as it creeps up on us ( it reminds me of  Simon and Garfunkel's lyrics "silence like a cancer grows") It is a shock to begin with with the waiting time being the worst also all the appointments, test, a technical jargon. Your mum is now in the system and things should start to move quite quickly, I'm sure once the ENT consultant has explained it should all become a lot clearer, and a treatment plan. Maybe you could ask for something to help your mum sleep or control her anxiety, it is quite normal for your mum to be feeling like this. Wishing you and your mum all the best for next week, take care.

                                                                                     Chris x

Thanks for this reassurance Chris. 
so sometimes they can never find where the primary is? But if you have the chemo and radio does it generally get rid of the unknown primary at the same time? 
did anyone on here have the lymph node dissection? If the cancer is in them too? 
the waiting game is hard, lots of nasty intrusive thoughts. The Gp has given mum vallium and sleeping pills which are taking the edge off I hope. 

I went for ages with just a diagnosis of cancer from a dissected lymph node.  The cancer is found in the lymph nodes as they are designed to catch things like cancer cells - so it is not unusual.

After having various surgeries with still no sign of my primary I opted not have radiation or chemo, but keep it in reserve in case the cancer made a re-appearance.  4 years later it did and I have a definite primary and I have just completed my CRT.