Hi mrjincs,

Welcome to Cancer Chat. I'm sorry to read about your recent diagnosis and I hope you're getting on OK. I see by now you've had the ultrasound so I hope it went well and that you've now found out more, or can do so soon.

Once you have the full information and next steps, hopefully things will become more manageable and with less uncertainty.

Do of course use this forum as much as you'd like at any point - we're always here for support.

Wishing you all the best,

Ben
Cancer Chat Moderator

Thanks Ben,

my ultrasound seemed to be fine and the nodes still seem unaffected but my tumour is now bigger than original diagnosis and my oncologist needs more imaging to clearly plan treatment so back in for MRI tomorrow.. As such might also need left side of neck treating. Not great but trying to remain positive.

if anyone has ideas of how to pass the time whilst waiting for results or going through treatment, that would be really helpful. It's the waiting around I'm finding most difficult.

thanks

That's good to hear that the ultrasound was OK - and it sounds like things are moving quickly which is good.

Hopefully others will reply here to help with your query about advice for passing the time. If not, feel free to post in a new discussion about this and hopefully that will generate some responses.

All the best,

Ben

Thanks Hazel, I'm so pleased you are through the other side and getting on with your life. Things took a turn for the worse last week in terms of diagnosis. After the CT planning scan they sent me back in to have an ultrasound because they were worried about a node. I had that node or what they thought was a node needle biopsied but the day after my oncologist rang after they'd all looked at the original MRI, CT planning scan etc again and decided that what they thought was a node might be the top of the tumour. There's still no evidence from recent ultrasound that nodes affected. As such, the tumour has moved from a 2 to 3 possibly just a 4 and because they can't be sure and needed more imaging I was back in for MRI on Friday. Whilst disappointed with the growth of the tumour I suppose I'm reassured that they spotted it and didn't press on with a miscalculation. Won't get confirmation on this until tomorrow, best I can hope for is it's a 3 not a 4. I'm HPV positive but didn't realise it had a number? Is the number important?

Due to size and my age, I'm 49 they are now advocating both sides of the neck and 2 rounds of chemo with fairly standard 30 radiotherapy sessions the radiotherapy. Now deciding to add the left side if tumour has grown significantly appare to doing left side with large tumour improves chances significantly of getting to 5 year point than just right side. Bloomin problem with that is I hadn't had my left side wisdom teeth out when I had my right out so this now happening on Tuesday pushing back my treatment a week which i'm finding very difficult. I get paranoid about time and nodes as to the man on on the street I've always heard that if it gets in to them then it goes everywhere? And obviously time because of tumour growth and potential to get into the nodes!

Thanks for taking time to write will take a look at your blog. 

Hi 

i will try to reassure you , firstly the  h p v diagnosis is good in fact s my oncologist said if he was unlucky enough to get it it’s the one he would want .there are various numbers yours if head and neck which it is will be either 16 or 18 again using my oncologist s words it adds an extra 20 % to the numbers in my case  92-94% chance of making the 5 year mark to which I said I will take those percentage so  hope that helps. As for nodal spread again h p v head and neck cancers are mostly found when it’s reached our lymph nodes .the lymph nodes capture the dead cancer cells like an holding tank it’s extremely rare for any other organs s to be affected all the lymph nodes are doing is their job .Is how it was explained to me  

in my case I had nothing apart from Larry the lump in my collar bone which I thought I had pulled while cycling I had no sore throat earache nom problems swallowing I don’t drink or smoke .i wasn’t the fittest I had ever been atbthe end if august I reach the 2 year since treatment finished milestone somtake heary if me a 61 years old atbtiem of diagnosis can do it you can as well . I had by time  treatmentbstarted developed several more lymph nodes  but the chemo radiation got everything .if your teeth need pulling is is far better to have it done now a week or 2 in scheme of things doesn’t matter, But if your teeth needed pulling in the first year  if treatment that can be much more probalamatic .hope  this  helps keep postive mental,attitude you can do this . 

Treatments hard but end result is good on a timescale you will be more or less following me my treatment I  started the 16th of July 2018 and that Christmas I managed to eat my Christmas lunch ,ok not as much as I would usually have eaten but I did eat. If you are offered a peg for eating ,or like me a n g tube please take it as it will make your recovery easier.

good luck keep in touch Hazel thank you for reading my blog hope it helps .i had a few guys with me who were also T4 the year came through treatment with a positive recovery at the end.

Hi Hazel 

thanks, in the peg or ng tube you mean during treatment or after. My nurses have been clear that they will try to keep me off both as doing so aids recovery.