Hi Jane

I also have just been diagnosed with cancer in the RHS Tonsil area ( I dont have any they were romoved as a kid 60 years ago) to say I am scared is some understatement also I am so emotional, I have no experience of hospitals and everthing scares me to death. I have a tosil biopsy next week , I have had biopsy of node in my neck<positive> and a PET/CT scan showing the primary as tonsil area.

First I was told it would be just surgery, then surgery and Radiotherapy and following the PET looks like just Radiotherapy will be used although they want to see the results of MIR scan before final decision.

As far as I know and was told Radiotherapy is very pecise although it will destroy some of the good guys near the target area but it is not a blanket area that is zapped.

I am scared of everthing and anything, especially the PEG thingy and the side effects that will come later, I have a terible gag reflex in my mouth so its the worst possible place to have people poking me about.

But we have no choice and have to face it head on. Keep strong!!

Hi CB,

Try not to worry. I'm just recovering from tonsil cancer and whilst the side effects of radiotherapy is no joy the survival rate is one of the highest of all cancers.

You'll probably get 7 weeks x 5 days (Mon-Fri, weekends off!) of radiotherapy (10-15 mins & painless), plus a dose of chemo on your first day and one about 5th week in. It's Grade A world class treatment. They'll probably test you for a virus called HPV, which if you have, bizarrely increases your survival rate further.

You'll probably need to arrange lifts after first week or so of treatment, as you'll feel *** for driving. Get a rota in place for people to take you as soon as you get your treatment schedule. Taxis other option if hospital not too far away, wouldnt recommend public transport. 

Pre-treatment you'll have a PEG or some other type of feeding tube fitted to your stomach as you'll be living on medical nutrient milshakes for a while as your throat being nuked by high powered X Rays will be "closed for business". Eventually this will be taken out post treatment and you'll wean yourself back on to normal food over a few months, sloppy stuff to start, then more lumpy stuff then tougher stuff to chew and swallow still later (I'm still on semi-solids 4 months after treatment but PEG removed).

Tips :

1. Don't worry about Radio or Chemo they aren't painful

2. If offered some "sedation" for your PEG fitting, take them (benzos) as it can hurt a bit

3. You'll probably have to a have a few teeth out on the side of your cancer. These are any teeth deemed at risk of future extraction as they can cause problems with your jawbone if extracted after radiotherapy. Restorative denistry is an option, I'm just chewing on one side of my mouth at present.

4. Worst time is last week of radio and the week that follows it. After that you'll gradually start to feel better.

5. Relax, it'll all be fine. They successfully treat up to Stage 4 tonsil cancer and once it's gone it doesnt come back.  

Oh, and I lost my wife to suicide early in my treatment (unrelated, Bi Polar depression) so if I can do it, anyone can.

Hi Hilts911

Sorry to hear about  the suicide  if your wife ,must/have been a very difficult time for yiu. But your words of advisecare somtrue cant comment in the peg as I was told wouldn’t need one so had feeding tube at week 4 for 45 days. 

Keep strong

hazel 

Yeh it's been hell Hazel, the loss of my lovely wife at only 47 years of age dwarfs any of the cancer treatment or effects. I was the one to find her. I am having weekly councelling (private, as public waiting list was untenable). 

I guess thats why I am so sanguine about it all. I can live with the cancer an all it's got to throw at me, although I fear my broken heart will never mend. Got to try and get through each day though and hope for better days ahead. 

Hi 

if I can help at all with the cancer effects just shout out . I fear you are right about broken heart but just try and live for each day slowly slowly. Am a good ear if you want to rant. If I prefer send me a friends request then it’s not on open forum. Otherwise take care 

h 

Thanks Hazel,

Only things I am struggling with (treatment after effects-wise) is ongoing dry mouth, and appetite to move the eating forward more back to normal. I use the bioxtra products and/or water for dry mouth. to be honest unless I'm doing alot of talking thats not too bad but talk alot and I need the gels/sprays/water all the time.

Struggling with appetite for real food, I can eat Spag Bol, Shepherds Pie, mild curry/chilli, soft pasta dishes etc but could do with some motivation to eat more regularly. I think the extra layer of bereavement grief on top of radiotherapy has killed my appetitie and watered down the mission to push myself as much as I should. I rarely get hunger pangs and still have trouble swallowing properly. I know I could do more, but when you're not hungry and mired in grief it's all too easy to reach for a nutri-shake to get your calories in a balanced way. I can eat dessserts but they have lost their appeal having had so many.

Hilts911/Others

Just though I would add a little to what Hazel has helpfully provided.

I totally undertstand re struggling with appetite and I'm week 17 post treatment and still struggle with my appetite and still on ensure drinks.Same with havig no hunger pangs or desire to eat and lost quite a bit of weight. I also just often reach for the suplement drinks as easier trying to force eat, but I'm sure thats just a time thing.

As Hazel has alluded to this is no great picnic when it comes to treatment and recocery and it cab be a real challenge so sympathise. To give some confort in al this, I found the actual treatment not too bad and you get used to it and its only 10 mins a day for radiotherapy. It's the recovery after treatment that I have found the most challenging. Chemo is not always part of treatment and will all depend on size/location etc and will be decided by consultant. I never had any chemo and had 30 sessions of radiotherapy daily over a period of 6 weeks.

I started a thread called Radiotherpy for Throat Cancer and its here under living with cancer.
Please feel free to join in as there are quite a few of us who have pulled together in terms of support advice etc.

Like Hazel I have kept and written a blog from the start and logged journery warrts and all.

Please feel free to read my blog as well as Hazel's and will give you an idea of my joureny, warts and all and what potentially to expect and there is also a section with a collection of tips pulled together.

We are all different as will recovery period, but we hope our blogs are helpful and give an insite to our experiences with this.Again, like Hazel we found the challenges worthwhile at the end of the day as we both have had the all clear( mine was 2 weeks ago ) and the light at the end of the tunnel does actually exist.
Please keep us posted and let us know if we can be of any further help

radiotherapythroat.home.blog

kind regards

Ian

Hilts911/Others

Just though I would add a little to what Hazel has helpfully provided.

I totally undertstand re struggling with appetite and I'm week 17 post treatment and still struggle with my appetite and still on ensure drinks.Same with havig no hunger pangs or desire to eat and lost quite a bit of weight. I also just often reach for the suplement drinks as easier trying to force eat, but I'm sure thats just a time thing.

As Hazel has alluded to this is no great picnic when it comes to treatment and recocery and it cab be a real challenge so sympathise. To give some confort in al this, I found the actual treatment not too bad and you get used to it and its only 10 mins a day for radiotherapy. It's the recovery after treatment that I have found the most challenging. Chemo is not always part of treatment and will all depend on size/location etc and will be decided by consultant. I never had any chemo and had 30 sessions of radiotherapy daily over a period of 6 weeks.

I started a thread called Radiotherpy for Throat Cancer and its here under living with cancer.
Please feel free to join in as there are quite a few of us who have pulled together in terms of support advice etc.

Like Hazel I have kept and written a blog from the start and logged journery warrts and all.

Please feel free to read my blog as well as Hazel's and will give you an idea of my joureny, warts and all and what potentially to expect and there is also a section with a collection of tips pulled together.

We are all different as will recovery period, but we hope our blogs are helpful and give an insite to our experiences with this.Again, like Hazel we found the challenges worthwhile at the end of the day as we both have had the all clear( mine was 2 weeks ago ) and the light at the end of the tunnel does actually exist.
Please keep us posted and let us know if we can be of any further help

radiotherapythroat.home.blog

kind regards

Ian