Head & neck

FgI had cancer treatment for ssc hpv+ found in right tonsil

They removed both tonsil then I had 37 lymph  nodes removed and the tonsil bed removed (surgon said he went in deep )

Biopsy report for the second surgery where

Tonsil bed clear 1 out 37 lymph nodes had cancer which we knew cos p16 + had did not break out of the single lymph node 

My Q is they on about radiation my surgeon say I am in a comfortable place and have good margins but they are still saying I need radiation which does scare me a lot cos of all the side affects I had eating proplems since surgery and lost my voice but they do say it all improve over time but confused about radiation thxs 

  • I had 2 lots of day surgery for an early vocal cord cancer and, even though my consultant considered it successful I was advised to have a course of radiation to make 100% certain they’d got it all. The possible side effects were explained and, despite the fact that some of these filled me with dread, I agreed to the RT. I was very fortunate and could eat throughout, albeit with pain in swallowing. I applied loads of cream to the area every day and so suffered no unpleasant burns, although it was extremely red. My worst time was the 2 weeks immediately after treatment finished, when I did not stop coughing day and night. Fatigue was a problem but not unbearably so. 6 months down the line I still have mucous issues but the cancer has gone. I return every 8 weeks to be checked. So, if your doctors recommend a course of RT I would go for it. The side effects can be horrendous, or like mine, very mild, depends on the individual. My reasoning was to get all the treatment over, no matter side effects, and then I would have the best chance. Possible 6 months of unpleasantness against a life time cancer free ( we hope ). So far, so good. I wish you well with your remaining treatment, you’ve already had some rough times, things will improve.

  • Hi I am 9 weeks post radiotherapy for h p v 16+ cancer if the right tonsil  T2N2  I have written a blog which may help you. The radiotherapy is the belt and braces it’s nit pleasant and I am still struggling but pet scan earlybJanuary and consultant is pleased with my recovery. Everyone’s is different my blog may help yiu May get none if the side effects yiu may get more. Today I have ridden my bike first time in 6 months onky 12 k m but feel like a million dollars for doing it.

    www.radioactiveraz.wordpress.com

    Hazel 

  • Hi Woodstock and radioactive 

    Thxs for your reply and your blog I meeting 2 morrow to discuss radiator treatment I will take on board what they say.I know this is the worst cancer treatment any can go through and it shows how strong many people are :) .

    I just got to find the courage strength I all ready have proplems eating atm and my weight went down to 8.5 stone I lost so much weight that I think my body won't take it.I have 4 ensure compact drinks a day and even though my eating is improved and eating better I still under 9 stone so I got over tonsils out and then neck dissection and tonsil bed and some soft palate when I start to Turn a corner and in the back of my mind we not finished here more to about 8 weeks plus not able to eat so my anxiety levels are high I know the path I got to walk hopefully I get through at the other end 

    Thxs 

  • Hi James you can do it to start with the radiotherapy won’t effect your swallo so keep up the Ensure I am in 5 a day plus fresubin 400 calories a time .getting 2000 calories a day in I keep them all in fridge n find they go down easier onky can do vanilla banana n if I must strawberry 

    people in here will help with support but have a positive attitude and yiu can do it ,remember treatment is tough but outlook is good 

     

    hazel aka RadioactiveRaz 

  • Also gsrgle gsrgle gsrgle warm mineral water and salt I do ut all day n night plus brush your teeth regularly I git baby toothbrush off Amazon 5600 bristles n really gentle called curaprox £11 for 3 but worth it plus use sensodyne toothpaste for now the radiation formulated one by Colgate too string for our mouth at min we can use that after 

    Hazrl

  • HI

    Just got back from hospital and recommendations is radiation :( and no chemotherapy :) 

    So I agreed to go ahead and start on the 19/11/2018

    It b done at 2grs over 6 week so I recieve 60 grs in total 

    No peg feed atm will see how I go if stuggling then might go for feed up the nose.

    I will get through this and kick my highjacker out of my body :) I know it b a rough ride for a few months and I be almost finish by the new year so it b a go start for 2019 road to recover and hopefully cancer free but will still recover and no working till April as the doctor said finish and a least 3 month to recover or maybe sooner :) 

    This for your reply and wish u all the best for the future; )

     

  • HimJames go ahead and kickmits *** will be with you all the way if u need anything just shout out .its nitban wasynride but I am 10 weeks post radiotherapy and today walked 4 km we flew out to Spain last week for some sun we’ll I can’t sit in ut but it’s nice to feel it. 

    Like unsay it’s nit an easy road but a necessary one  refer to my blog ps I had nasalmrube in at week 3/4 was in 45 Days nd literally a life saver as bybthen it was eggs n nothing else’s divorce was looming as hubby couldn’t do right for doing wrong .

    Food ni chemo I had 2 and 79 ginormous radiotherapy 

    www.radioactiveraz.wordpress.com or

    www.gammaraygary.wordpress.com

    for tips 

    just remember clean your teeth I do mine at least 8 times a day get a magnifying mirror to stick in to the bathroom one it’s surprising how much u miss without it and get shares in tissue firms as yiu will use boxes 

    good luck here if u need anythjng

    hazel