Hi MDS82 this is Hazel I am 15 month post radiotherapy for tonsil cancer with effected lymph nodes . I know yiu are in Australia I have read about a few Australian site can’t think of links at moment .

yes it’s not uncommon for the primary not to be found in my case it was ought tonsil Glad yiuve git a consultant who will listen .mine was fantastic , I know a few others don’t have the same experiences so that’s a plus point for you.

To be honest the treatment is brutal no point beating about the bush butbteh recovery can be challenging but often the outcome is excellent ,you need to find out if yiu are h p v 16/18 positive has  that can have an outcome on treatment and end results .

i have a blog detailing my experiences in the U.K. heath system 

www.radioactiveraz.wordpress.com

Thanks a lot Hazel. I spent a lot of time last night reading through your blog. I had started reading it before I got my confirmation. I just kind of knew. 
 

I must say you're a very strong and inspiring person, not the self proclaimed wimp that you've mentioned a few times. I will draw inspiration from your journey and Ian's who I've also read. I would like to connect with him also. My wife is a Scot so some home comforts there too. 
 

I am a fighter and am fit and strong. I'm up for this and will do whatever it takes to pull through. That is my only objective. I am scared of the cause as I understand that will determine how hard my recovery will be. 
 

I understand you never had surgery. Is that correct? If so, can you explain why? Thanks Hazel for responding to me.

Hi 

I didn’t have surgery as being h p v 16+ in the U.K. it’s not always deemed necessary as the traditional route of chemo radiation seems to work ,my oncologist said he  prefers  to leave the surgery option ,as an option for later if the radiotherapy doesn’t work. Plus in my case by the time of my pet ct scan before treatment the dead cancer cells has progressed to more lymph nodes a tiny one being near to my spine ,so the m d t team said surgery at that point wasn't a viable option. 

Re Ian send him a message via his blog or on here on his thread he will get beck to you His thread Is Radiotherapy for Throat cancer .ig u don't hear from him let me know I am in personal contact 

if u feel happier private messaging me send me a friend request . 

we have friends in Redlands Bay and Koolangata Australia.

re me being a wimp I can assure you cancer treatment apart I cry if I break a fingernail. Hinest But when I got diagnosis I immediately took the decision it wasn’t going to beat me and positivemental attitude  got me through it. 

Re h p v it’s the fastest growing by incident in the world at the moment ,previously thought it was many sexual partners but John and I have been together over 40 years so dr ruled  that out straightbaway . But it’s conceivable that it’s been dormant in my system for over 30 years s in my early 20 s i had several suspicious smears .usually tonsil cancer is a 97% male cancer so I was i. My drs words special. Gee thanks I said 

hope this has helped please keep in touch Hazel x

Hi MDS82,

I'm Ian ( Anchor1707) here and happy to connect with you.

Also happy if you want to private message and open up a little more on one to one.

Glad you found both our blog's helpful as they have helped quite a few people in similar circumstances as well as their partners. Also can translate into Scottish !

I guess you are where you are and can sometimes depend on where diagnosis is and area to be treated re surgery/teeth extraction necessity etc If you have read my blog, I had surgery to remove tonsil and as much else as possible, then had all back teeth extracted before radiotherapy for 30 days. Teeth extraction is because radiotherapy can cause more teeth/gum problems if left in.(so I was told) so better out.
Treatment you get through and yup the recovery is challeging but I always said there is light at the end of the tunnel waiting for you. Prognosis for this cancer is a very high chance of cure and high success rate so try and be as positive as you can. It helps.

Also started a blog here when first diagnosed and might be worth trawling through some of the interactions of us all. Was like a little community spirit and well over 1000 posts so I think quite inspiring for quite a few.
Its on here called 'Radiotherapy for Throat Cancer' and under Living with cancer or look for Anchor1707 and that should get you there.

You already have a link to my blog but if there is anything at all I can do to help, then please let me know.

kind regards

Ian
 

Thank you so much Hazel and Ian. I will definitely take you both up on your offer and connect. I appreciate your insights and offer for support. It means a lot and gives me strength. 
 

I hope I will learn the full biopsy results today and then my options for treatment. Tomorrow is my appointment with Dr xxx in Sydney. I know him and feel like it was fate we met earlier in the year about something unrelated. He is very determined and has all the latest technologies. Most importantly I feel that he really cares and is in this with me. 
 

ian, was you offered or did you have robotics surgery? It's been mentioned as an option if deemed practical post biopsy results. I do not know much about it. Do you? 
 

Lastly Ian, who is your team? My wife is from Broughty Ferry, Dundee. She is the non United side of the city. 
 

all the best 

mike 

Thanks BB

it sounds like you've had a bloody rough time of it already and you definitely are a fighter. Good on you. When are you expecting your stomach biopsy back? What type of cancer are you fighting and do you know the cause?

I've learnt so much this past week from Hazel, Ian and the Doctors. All the unknowns for me are almost known. I'll won't be having surgery. Will be straight to Chemo and Radio. Not sure when I start. 

Wishing you all the best and please keep in touch.

mike 

Hi Mike, I haven't yet got a date for my tummy biopsy but the hospital got intouch today to arrange another ct scan (to be confirmed).  My wisdom teeth removal tomorrow (not looking forward to this one but necessary). Things are moving fast so I expect next week for the surgery, hopefully it's not linked and just precautionary. I think all surgery before Christmas and then the radiotherapy starting next year and I can't wait even though it will be painful and worrisome for the family (which I haven't told yet due to my mum's reaction as she an old lady and I want to be able to reassure her I will be ok ). The type of cancer is HPV and I feel sure of beating it , it's my tummy that's the bogey. I will keep you posted during my journey and wish you strength, hope and happiness for the future . Bentley Boy 

Hi Mike, I had 3 wisdom teeth out this morning and thankfully all went well (big thanks to Patrick and his assistant they were fantastic). Also my ct scan is due on Sunday due to a cancellation, big thanks to our NHS, magnificent staff and a donation on it's way. Regards Bentleyboy. 

Hi there MDS82 

Welcome to the club no one wants to join - a small but friendly group. Its great that Hazel and Ian have been aling to say hello and share their experiences. 
My hubby was diagnosed with stage 3 SCC tonsils with lymph node tumours exactly 4 years ago on the 8 th December. This came completely out of the blue - a lump appeared on the right side of his neck - as were none smoking , teetotal, vegetarian and regular runners. After a biopsy of the lymph nodes to confirm the diagnosis he had a bilateral tonsillectomy and then proceeded to have 5 cycles of cistplatin chemotherapy and 30 fractions of VMAT radiotherapy- chemoradiation. Unfortunately despite this he still needed a neck dissection as the lymph node tumours remained (little blighters !)

As Hazel has said the treatment is very aggressive and truly horrible but worth it for a positive outcome. 
 

So here we are 4 years later - 3 years in remission and living life to the full - definitely proof there is life after cancer. Take each day as it comes - there will be bad days where you think is it worth it but try to keep positive there is light at the end of the tunnel.

Were here to listen and if you have any questions we'll try to answer them the best we can.

Good luck and keep in touch 

Best wishes

Emma