Update 12 Months On

Ohhhh, I am so sorry to hear your news. My consultant told me that surgery was an absolute, so I had no choice. I also had 30 RT and 2 chemo sessions.

I am 8 months post treatment for (possible tonsil cancer) and had a neck dissection with removal of cancerous neck lump in lymph and other lymph nodes removed.

I am happy to answer any questions if I can.

Hi Brandy girl. I had a neck dissection just over 2 1/2 years ago where 52 lymph nodes were removed. I had 33 radiotherapy sessions after the dissection. They stapled my neck and now the scar is very faint. I had lymphoedema for quite a while after but I have religiously performed lymph drainage exercises every day & apart from the faint scar and a pinkness from the radiotherapy you can hardly tell. 

Recovery was quite quick although I contracted MRSA in the wound in hospital so ended up back in hospital for 4 days. It's a breeze compared to the radiotherapy.

Hopefully this will sort out the problem. 

Thanks retired suppose it helps to know that others can come through it all.  Most frightening is the possible effects/ consequences of surgery that can be permanent. 

Quality of life is important to both of us and as he has considerable scarr tissue damage from the radiotherapy the surgeon doesn't know how much .muscle will have to be removed. 

Need for questions answering before final decision 

Thanks piya10. Will get list of questions and come back to you.

Thank you

hi 

sorry about your hubby,i just wanted to let you no that, 10 years ago i had base of the tongue cancer and lymph nodes cancer,and i was as sick as a dog,but at the time it got rid ov it ,but now im thinking like your self,,,why didn,t they cut it out then, because its back and all they can do for me is to cut it out,but fair play things av really got moving, im in hospital on sat 4 july,for a 4day detox then the ops on the 8th july,the surgeon tells me to expect a 4week stay due to the fact that ive had radio therapy before and this could [will] have damaged the blood supply to my jaw bone,because they have to cut [saw] through it to get to the cancer which is deep at the base of the tongue,,,the op im having is called a lip split mandibulotomy ,but ill try and keep you updated on how its turning out.....,by the way when they put my jaw back together it might not heal together due to the  radio therapy [blood supply] so they might have to take a bit of bone from my leg,,i think thats what they said,,, and replace it with my jaw i think thats where the 4 week stay comes in hospital well brandygirl ill keep you updated as much as poss

I had 2 neck dissections back in Nov 19 and Jan this year.  No further treatment - just yet.  Recovered quite well.  Happy to discuss either on her or in private messages.  Just shout.

Hi Brandygirl

I posted a reply to your post last night but for some reason it hasn't appeared!

I'm so sorry to read about your hubby.  As you can see, lots of people have had neck dissections to some degree so lots of support and advice on the forum.

All the best to you both.

Linda x

Hi PFJTHS

Will get some Qs together and hopefully message you privately.  I am not sure if you need to be friends for private messaging but if so I will send you friends request.

Can tell not a techie.

Cheers

Hi Brandygirl

I'm sorry to hear this I had 2 cycles of cisplatin  and FU5  then 6 x cisplatin  30 x radiotherapy  for  primary base of tongue and lympnode treatment finished  1 November 2019 follow up MRI  PET scan  feb showed possible scar tissue march I had same symptoms sore throat  repeat scan showed treatment didn't work on primary this apparently is very rare april I had lesion removed  along with biopsy didn't get clear margins so I'm being what's called radiography surveillance every 6 weeks it's a complete nightmare you have my sympathy I cant believe such harsh treatment and it didn't work it was explained to me that doing surgery first makes no difference to out come statistically so why put someone through unnecessary surgery if treatment works .

HI brandy girl

sorry to hear your news but don’t give up hope chemo radiation is the way most hospitals go now ,that leves the option of neck dissection if need be ,I do know of a few who have have has to go down your route  if you look on. The cancer U.K. site a lady called Emma whose nickname  is Newleymarried her husband is now 3 years since his neck dissection and his living his life to the dull we meet up twice a year on our way to Spain  so I can vouch for that. In fact they got married 12 Fay’s after his neck dissection it was all,planned so it went ahead .Imwas told chemo radiotherapy first as Neck dissection could always be done later if need be .whereas if neck dissection dome first then chemo radiation and there’s any stray cells left there no more radiotherapy allowed in that area. Am sure you are gutted but you’ve done this on e your hubby can do it again .

the other person I know is in Australia he has a very rare head and neck cancer had 4 weeks chemo then the usual 30:days chemo radiation but still his pet ct scan showed cells so on Tuesday this week he’s had his neck dissection.

stay strong you will get through this.

Hazel xx