Hi Ian

i am 7 weeks post radiotherapy hang

In there it’s a tough road I did 35 radiotherapy sessions 2 chemotherapy.

i have also done a blog www.radioactiveraz.wordpress.com takes u from diagnosis to present day.newlymarried on here is good if u have any questions just shout out. Mine was HPV 16 + cancer of right  tonsil and lymph nodes 

hazel aka RadioactiveRaz 

good luck 

Hi hazel I see this was 2018 I was wondering how you got on and could tell me the treatment you went through , I have just been diagnosed with tonsil cancer and going for my first CT scan tomorrow any info would be gratefully accepted.

I'm sending Yoda healing hugs for the next time .Reminding ebp everyine  this month to remember ti get thyroid bloods checked annually as well. I'm one of lucky ones at leastb50% of us end up of thyroxine for under active thyroid. Ask ent consultants for referral for bloods ti get TSH  and t4 levels  checked. 

hugs Hazel 

Hi all

Just popped on to say hi and although I haven't commented recently I just wanted to mention that if anyone is having problems with swallowing- gastric pain post treatment- my hubby is 6 years post chemoradiation and neck dissection please get it checked out. Apparently you are more susceptible to Barratts Oesophagus- can be a precursor to oesophageal cancer - if you've had chemoradiation for head and neck cancer - and my hubby has recently been diagnosed with it. Luckily its only a short segment and only needs monitoring at present but just to make everyone aware its a risk factor. 
 

Anyway just thought Id mention it in this thread as Hazel was reminding everyone to get their Thyroid levels checked - hubby has a damaged thyroid too ! But as he says he's still here and living life to the full which is the main thing.

Onwards and upwards 

Good luck everyone xx

Emma 

Hi Emma Good reminder. 
scarily  it's 4 years since my treatment started you were my rock then and still best friends. 
Hazel x

Hi All,

I had a CT on Thurs and was told Friday, subject to the PET scan in September, that the tumour has been eradicated and the lymph nodes are back to normal

I'm 6 weeks post treatment and starting to eat better. I'm mostly off the shakes and managing soft easy to chew/swallow foods. Having to slow myself down a bit as I'll try to eat something that will damage my mouth/throat - I'm not one for patience!

Still short on saliva but taste buds are definitely coming back. I feel a bit guilty that I seem to be ahead of where others have been. Not going to go back to work until September so will continue to work on my recovery over the summer.

Ian, thanks for the response to the msg. I continue to go back and read where you and others where at this stage knowing where you are now :) Very helpful.

Hope everyone is coping with the heat. Enjoy the summer!
 

Regards,

Robert 

Yes I mentioned here before , its affected my thyroid, subclinical no meds so far. And acid worse so got ENT  to look at esophagus too.  Its serious treatment  this. Latest scan fine, 3 scans to go till 5 years are up.  I never assume anything. Its changed me mentally. This forum helped / helps. Onwards  mis amigos xx

Hi there Ro8ert. 

I've been looking for someone to ask regards eating after radio so your post is a blessing for me. I'm 3 weeks finished of 33 doses of radio. Currently I'm on the shakes but I'm really keen to get going forward. Because of the burns and ulceration to my mouth, I'm reluctant to try a lot. I tried tomato soup but u wasn't aware of the acidity which made the stinging of my tongue flare up. Tinned tomatoes likewise. I managed a custard slice last night which despite being small, is a massive win for me. 

Youve said 6 weeks in your post. I appreciate that's not a uniform recovery but I'm keen. Can I ask how you weaned your way on to foods again? Porridge maybe? My saliva is starting to come back gradually which gives me hope. 

I've sent you a friend request on here so I could message you privately. Either accept or not it's OK. Just looking for someone who can offer me a personal diary rather than nurses telling me i will get there. 

Furthermore, because of my radio, my jaw has lost some opening. Has this happened to you also? How did you deal with this? 

Thanks. Matt.

Hi Matt,

Ive posted a link to my blog which may help with timelines.

Food can be a challenge in recovery and I had really good advice from my support team and dietician on what we classed as "good" and "bad" calories and when to take them.
Main thing is getting fuel into your body and even starting with softer foods like mash,scrambled egg, yougurts rice puddigs etc and gradually move on. Many of us took a bit of time to fully get back on the road to what we would class as proper eating and its a gradual process i'm afraid in most cases.
Hope the blog helps as a section on dietry/eating foods etc and I would also advide speaking to your dietician who are all part of the support on the road to recovery

Hope helps but feel free to ask away if I can help with anything at at, I am more than happy to do so.

radiotherapythroat.home.blog

kind regards

Ian

Oh wise one. 
I forgot to ask about thyroid!! Next time.

Consultant doesnt seem to think another dilation will work at all. As the gullet is so tight it might tear!

Going to do another videoscope to see if these was is any different made by the first dilation. I'm hoping to ask for a referral to Guys. Hoping someone will have an idea  

If he could swallow his silivia that would be great  

Tube feed with not end! 
 

Chrissy B 

Hi Matt,

Well done for getting this far. The 2 weeks either side of the end of my treatment were my worst so hopefully you are over the worst. Ian just beat me to it! I was going to suggest you read his blog.

From reading historical posts on this thread, it is fair to say that everyone is different. I feel lucky as, as well as reading stories of others, the consultant and dietitian have told me that my progress has been ahead of the curve. 
I am 10 weeks post treatment and have been in Czech for a month (Czech wife). We have done a few 50km bike rides and a lot of walks and I'm feeling much better. I have to drink constantly and investing in a hydration backpack is the best thing I have done!

I'm eating sensibly. I can eat most things but foods with a lot of sauce are ideal. My saliva is coming back but still a way to go and my taste buds are still off.

Will send you a msg with some more detail.

Robert

Hi. Chrissy oh dear sorry to hear re dilation. As for thyroid check if you have a cancer nurse give her a call sm sure she can arrange  one I know mine can. It can't hurt to ask for refferal know Vin Paleri is doing amazing surgery. 
please kerp in touch 

Hugs Hazel xx

Hi. Chrissy oh dear sorry to hear re dilation. As for thyroid check if you have a cancer nurse give her a call sm sure she can arrange  one I know mine can. It can't hurt to ask for refferal know Vin Paleri is doing amazing surgery. 
please kerp in touch 

Hugs Hazel xx

Oh yes. We watched a prog "Super surgeons". He was on it. 
I must get on his consultants case!!!! 

thank you 

Chrissy xx
 

Hi Chrissy excellent programme shows what they can do to help us. 
yes please do. 
Hazelxc

Hi,

My mam completed treatment for tonsil cancer hpv pos in June 2019 and got all clear in September 2019. She has been doing so well but over the last 8 weeks developed a hard tender lump in shoulder collarbone area on same side that the tonsil cancer was. 

She was recently in for a camera test as part of her checks and that came back clear but she asked them to check the lump and they've referred for a pet scan which isn't for another 3 weeks. We are worried sick. Has anyone any advice on what it could be? I'm terrified it's back and gone to her bones or something but trying to not think the worst as i know hpv cancer is very treatable but im not sure on the likelihood of reccurance or mets.

Thanks 

Olivia

Hi Olivia sorry your mum going through the waiting again. Yes h h p v cancers are eminently curable and reoccurrence s are extremity rare but they can occur. A pet fct scan will show if there's any active cells remaining. If it helps any my lump in my collarbone wasn't sore or tender it was just there. I know it's no help but try to remain positive dud the consultant do a fine necks biopsy ? Hoping for the best for all of you 

Hazel x

Thanks so much for your reply I've read through these threads over the last couple of years so many times. No they didn't do anything else except order a pet scan scheduled for Oct 21st which is about a three - four week wait since her check up. Then another app has been sent today for November 4th presumably for the results. I feel sick with worry. She originally had a large lump high on her neck that was completely painless and eventually got it biopsied which confirmed it was tonsil cancer. She went through hell during treatment and after like so many of you. It has come as a shock as she has been doing so well and apart from a dry mouth has very little other problems and now this lump which is just so worrying. I am trying to take comfort that the camera test looked clear and they didnt rush her urgently for a pet scan (i am nearly sure that her consultant put routine scan on referral letter) but then I keep thinking what if its a secondary cancer thats elsewhere

X

Hi Olivia. Did your mum have a Macmillan or a cancer nurse they are a source of good info. I still have email stress and phone number of mine. Maybe give them a call or failing that the consultant s medical secretary they may be able to re arrange the pet scan earlier or give you an indication of what consultant wrote. It coukd quite well be a reactive lymph node has mum had covid ? Remember not all lumps are xsncer east to say but hard to do. All I can send is hugs and please update us as you can ir pop on to rant if need be. 

Hazel x
 

We're actually in Ireland she had a chat with her nurse who put her on cancellation list but basically said that she was lucky to get scan on 21st as some are waiting mucu longer. So not much help really although I would love to know what was written on referral letter but all we know is it wasn't put down as urgent but routine. I'm hoping this means something but hard to tell. She had covid back in march of this year but very mildly so not sure it would have anything to do with it. I just keep thinking the worst again thank u so much for the replies I really do appreciate it x 

I spoke to my mams team today and they said they did put the referral through as urgent and then the Radiology team put it down in there system as routine. So really not sure what to think and fearing the worst now after speaking to her team. They mentioned they were hoping it was post radiation damag. But I'm thinking provably not likely

Hi Try to remain positive the treatment is brutal I kniw I've bern there. I've now developed fibrosis in my neck I csn manage it but the hardening  of tendon s takes its toll. My dentist in may put me bsck in 14 day cancer pathway she saw something in my gum she didn't like. I knew it was food trauma I had eaten a ryvita  day before but I referred to her as the expert. There is a really long list of in going side effects we can all be susceptible to. Her team is doing what they thjnk us required never easy but you have to go with it I'm sorry to say. Just kerp in yiu thoughts 90 % cure rate and reoccurrence s are extremely rare. Hugs

www.e-roj.org/.../view.php

thus gives an indication of what we may or may not get  

plus I forgot I've got a vocal chord cyst due to lack of saliva  that was discovered a year ago  

Hazel xx

You're so kind taking the time to reply and I'm sorry to hear you have fibrosis but glad to hear you've remained cancer free I can only hope and pray the same for my mam. Her team said they found hard lump and as she has had radiation they couldn't determine what it was through examination alone so that's why have ordered pet scan and then mentioned maybe a biopsy too but I feel as if they know what it is already and are just doing these things to confirm it is so hard to stay positive but I do keep thinking that her type of cancer had such a high chance of cure and when she got the all clear two years ago we were so happy I just pray that it hasn't gone elsewhere. Do u know if it was a secondary tumour would her camera test have come up clear? Hard to find information on Google about this x