A year since I found my tonsil cancer

Hi Andy great post for all the newbies to read. There’s a good life to be had after treatment onwards and upwards. 
enjoy the kayaking I’m cycling in Spain at the minute. 
Hazel 

Great stuff, Andy! My story is very similar, except I had my tonsil removed last May so a couple of months ahead of you. Same back story though, sore throat, looked at my tonsils with my phone torch and the rest as they say is history...!

Also same on the taste buds font - sweet seems to have been most impacted. I could demolish a gigantic bag of Minstrels previously in one go; now I can only properly taste the first 4! It's great for my figure though, an enforced willpower LOL! Impressed with how much my taste buds have come back though and oncologist said they'll continue to improve for up to 3 years. 

Much like you I'm back to normal life and routines and activities. Still some fatigue but manageable. The Xylimelts are good aren't they! Just packed a couple for a weekend away on the coast - that's rock & roll!!! 

Enjoy your walking holiday!

Helen x

Impressed by 4 minstrels   has done my waistline some good. Tried some Portuguese Heather honey tasted good. Also Gavi wine tastes OK.  and 

Ha ha yes! I am finding that many of my usual favourites no longer do it for me. But I'm discovering new treats that I'd previously either overlooked or actively disliked, such as: Revels (probably a 'surprise' to your taste buds as you don't know what you're getting LOL!), biscoff cheesecake, Rose or blush wine as white wine now tastes vile (but tend to stick with Champagne ) and I also prefer croissants instead of bread, which is definitely not good for my waistline

Hi Andy,

I went for a LH tonsillectomy 3 weeks ago but surgeon ended up taking large biopsy as back of tonsil couldn't be removed from my throat.Can I ask you did they leave part of your tonsil too for the same reason ? hope you don't mind me asking.I haven't got my results back and am now playing the waiting game ......very badly !

Nerves are shattered and terrified that it will spread down my throat.Any advice ?

Thanks,

Turi

Turi, they could not surgically remove all of my tumour so I was left with tumour in my tonsil area and base of tongue. The biopsy took away the a bit of the growth that was coming out of the tonsil area but left the root there. The radio therapy was very effective at killing off the tumour cells and effectively removing all of the tonsil. Basically cancer cells are less good at repairing themselves so repeated exposure kills them off whereas your normal cells can fix themselves. So the tumour gets melted away. The radiotherapy was quite targeted which is why they do a mask for you to keep your head and neck very still. The NHS people were fabulous and really went out of their way to help. The wait is hardest but they will scan and target the tumour and can also use Chemo if required. I think I had about a month to 6 weeks wait from biopsy to start of therapy was unsettling but I tried to keep myself busy with other stuff. I presume they have or will set up an MDT multidisciplinary team meeting for you. If you can I would suggest you take someone with you as it can be a bit rapid fire with lots of info so it helps if someone else is listening too and ask questions. You should also get a nurse allocated to you to help answer questions and help you through the process.

Hope that helps

Andy

Hi Hazel,

Hope you don't mind me asking what does T2N2NM mean on your posts ? Are most non smoking/drinking cancers HVP 16+

Turi

Thank you Andy.It's so good to hear other people's success stories.I'm at the stage just now I just need to hear these stories constantly.

Turi

Hi no problem T2 stands for tumour size was between 2 and 4 cm n2 was 2 nodes nm no metastasis to other distant  parts if my body.
Yes a lot of oropharangheal cancers if not smoking ir drinking are attributed to the HPV virus. My biopsy was taken snd HPV status confirmed. 
Hazel x

Turi said:

Hope you don't mind me asking what does T2N2NM mean on your posts ? Are most non smoking/drinking cancers HVP 16+

T2 means the tumour is larger than 2cm, but no larger than 4cm.

N2 means there are cancer cells in lymph nodes on the opposite side of the neck to the cancer, or on both sides. None of these nodes are larger than 6cm.

M0 means the cancer has not spread to other parts of the body

I've snatched this from the Cancer Research UK site which has a good explanation

https://www.cancerresearchuk.org/about-cancer/mouth-cancer/stages-types-grades/stages-oropharyngeal

HPV positive accounts for around 80% of cases according to my oncologist but that figure includes ALL oropharyngeal SCC. Many smokers are HPV positive and some never smokers are HPV negative...but not many