Hi Amber,

Sorry to hear that you have joined our club but try and stay as positive as you can.

The prognosis is good for yourself and the success rates of complete cure are really high.
All plenty of good news stories on this thread from us all who have been through the journey and come out the other end.
As for advice...I kept a blog from the get go and have posted the link for you to have a read of stages/timelines/tips etc. That may give you some idea/awareness of potential road ahead.

Bear in mind we are all differenent and recovery is faster for some.
 

I had radiotherapy for 6 weeks and was lucky in that I could work from home.
In my expierince the first 2 weeks you dont notice anything and only start with some noticable differences from end week 3, particularly fatigue and starting pain medication. That said I was able to drive to and from hopsital for the whole 6 weeks myself although only 15 mins or so each way.
Long drives you may need some help later stages treatment, depending on how you feel and what meds you are on.
Best advice before treatment is to try and stay as positive as you can and know that there is light at the end of the tunnel for you after treatment and recovery.
Of course id does have some challenges along the way but you do get through it, like all of us here did.
Drink plenty water during and after treatment. That was my mantra and its one of the best medications throughout this.

Please feel free to private message if you want to chat more on 1-1 basis,clarify blog/ask any questions you like etc and there are plenty of people here for support, help, advice and always just a message away whenever you need it.

Please keep in touch and update your progress and how you get on with your next appointments etc.

radiotherapythroat.home.blog

Kind Regards

Ian

Has anyone on here had a reccurance within 6 months and additional cancer site.  I had T3 epiglottis cancer and two laser resections last year.  Last one in August 2019.  Had clear margins aftet the second one and thought well I dodged a bullet and just went for my checks.  Had one in Mid Jan and ENT said there was a raised area on the stump of previous surgery.  Within 3 weeks I had a huge lump appear on my top lip so i moved my next appointment up by a week and there is another small lesion in my throat and my lip is also cancerous.  Got appointment with Maxillo facial tomorrow and I am bricking it.  Dont know if its a met or a second primary but thats two close together that have grown rapidly not too mention a nodule in my lung I have a CT for next week which had also grown at Christmas but not enough to cause concern at that time.  Feel that this time I am in trouble.

Hello MO60

Just when you think you’ve contended with enough... it’s what in part makes the overall experience fearful. We have all been prepared to go through gruesome treatment on the assumption and hope it will be worth it in the end. Everything is an ‘on balance’.

I don’t know about everyone else but I was poised on high alert for several months post treatment as I understood throat cancer can crop up in multiple sites, a bit like a strawberry plant sending out spore type new growths. I do know someone who seems to get a new spot every few months and has it ‘shaved’ or scalpelled out early doors each time. It sounds like this type of local recurrence as metastasis usually go round the body further afield. Not sure about the lung module but we have little choice but to take guidance from the medical team.

Can I ask if you also had radiotherapy? One of my concerns was that as I didn’t I was missing out on blanket coverage of the whole area (one of the downsides of radio is the wide field of radiation and lack of specificity but it’s also one of the up sides where’s there is the potential for satellite cancer sites). I would imagine if the medics can detect discrete areas without general body spread they will cut out and treat. If your cancer is HPV 16/18 positive perhaps, and this is just my personal theory, like hand warts one can get crops of growths until the body learns to cope with the virus and they stop happening.

We feel for and are here to support you. It sounds like they are actively planning on treating you at this stage albeit it’s more of a protracted process. Take the guidance offered as generally the team don’t do things by halves. Keep us posted and find the strength to face this head on effectively. Max fax are amazing too.... they can make excellent cosmetic jobs of such challenges. Time will pass and you will get more definitive answers. 

Love Jane x

Hi Amber I was diagnosed with stage 2 throat cancer. I had to have my left tonsil removed I go into the Beatson on the 16th March for my first chemo/radio treatment and I am bricking it. You are in good hands so I advise just to eat well and Keep well hydrated and try not to worry too much because if there is anything to worry about then you will be the first to know. So don't worry about what might happen and concentrate on what you Know WILL happen x

Hi Jane, thank you for reply. No I did not have Radiotherapy, the consultant I saw said because it was on Epiglottis it would not work as well, then he made sure he was off on the day of my surgery, its a long story.  But the guy who did operation explained to me he could do laser 3 times, had two already, then we could throw radio and chemo at it.  If this failed it would be a full larygectomy.  The one on my lip is huge half of my top lip up to the nose is affected.  Had biopsy on it 12 days ago and appointment this afternoon for results.  However ENT wanted to book another biopsy so I had pre op assessment on Tuesday.  They will not clear me for surgery until after the lung CT and Max facial decide on a plan.  But the sister looked at my results and I could tell from her face it was not good so she confirmed it wasnt, but would not tell me anything else.  Admissions Clerk rang to say I would be seeing Anaethetist after CT results on lung so this is on 10th March, he will then decide if I am fit enough for surgery.  However she hinted that they had discussed me in MDT meeting and thinks my guy who did the surgery and Max facial may do a tandem operation.  But they are going to have to rebuild my face which worries me, and it will be lengthy surgery.  The last one I had was 4 hours because they did frozen sections while i was under to check they had got it all.  On top of all this I have Crohns which got bad because I am not allowed to take any immunosuppresants now.  Been on Modulen IBD for 8 weeks which is a liquid only food, have not eaten since 3rd January.  Because of lip I am drinking it through a straw.  Guess I will find out what the plan is at this afternoons appt.  

All the best

Mo

hello Mo

Please keep us posted.... a problem shared and all that. If they can cut it out, rebuild and radio it away the external result I’m sure will be acceptable to you. I’ve seen whole faces and necks carved up with exceptional results and scars that fade and blend and can be hidden. As we get older we are ALL going downhill aesthetically.... you might get a little chin tuck inadvertently.

Youve been through so much and it must feel relentless just now. They don’t in my experience sugar coat anything so you will get it all information wise. I hope you have support at home and use us.... there is kindness in bucket loads here. Don’t be afraid to voice your worst fears as they are very real. The waiting I know is one of the hardest parts when you want action or progress. Hopefully something will be happening soon for you. Let us know the upshot of today.

jane x

Hi amber 

this is Hazel aka RadioactiveRaz I had 7 weeks radiotherapy wily Monday to Friday they give yiu weekends off yippee.I am niw 18 month post radiotherapy for tonsil cancer with several affected lymph nodes and living my life to the max.

as Orr working through it I am retired somcant comment apart from I know of onky a few who managed to work at no point beating round the bush then treatment is pretty brutal ,but the outcome is generally good.

i like Ian have a blog pop by and have a look www.radioactiveraz.wordpress.com with links to other sets 

welcome to the club non of us want to be in but we are a friendly lot always willing to help

Hazel x 

Hi Mo 

so sorry that you finds find yourself  on the merry go round again , try to remain positive sending hugs let us know what the meeting has said.

Personally I am still ok every 3 monthly checks ,I had 35 radiotherapy sessions and 2 big chemo if I can help just shout out 

sending hugs 

Hazel,xx

Hi Shaunboy welcome to the club that none of us want to be in i am now 18 months post radiotherapy for tonsil cancer with affected lymph nodes,35 radiotherapy sessions and 2 chemotherapy.any advise just ask 

Hazel x