Sqamous Cell carcinoma, T4N3 back of tongue , lymph nodes on right side

Hi Ana77, I think things are heading in the right direction reference the decrease in the tumour size, sometimes you get times when you take two steps backwards i.e the tongue swelling and under the chin, this could be to do with the treatment. Its good to read that you are having a p.e.g fitted as it could come in very handy if your swallowing becomes difficult or like now a swollen tongue. The mask is like having a warm towel over your face where the warm mould is moulded around the contours of your head, eyes, nose etc, it does not take long to make and does not hurt.  Of course, you will get side effects to the treatment but how good or bad they just depend on the body and its reactions. Please come back and let us know how things go or if you need more advice, good luck with the treatment, best wishes.

                                                                                Chris x

Thanks a lot Chris2012! 

I’m due my 3rd round of chemo on Friday and the radiotherapy. It takes a while to get the mask done and get started. Is it normal to wait more than 3 weeks for the actual treatment ? Seems like a long time. 

Thank you again. All the best 

Ana x

I had nearly four weeks between my mask fitting and treatment starting Ana; it was always emphasised to me that giving exactly the right treatment was more important than having it done quickly and as we're all different each individual plan needs to be carefully put together.

Hi Anna 77

This is Hazel I am niw 7 months post radiotherapy from T2N2 No for cancer if rightbtonsil amd lymph nodes squamous cell cancer. I have a blog that may help yiu it’s goes from diagnosis to present day ,it’s nit easy but it is doable

my blog is www.radioactiveraz.wordpress.com  it may help yiu I am a 62 year old female who is also a wimp if I can do it anyine can it’s not easy but the results are good . 

There are many days where uts 1 step forward and 2 steps back , even niw I still have those days but am cycling and started hill walking .

somgoid luck don’t be afraid

any questions just ask someone will always reply

hazel

Hi Ana77

I'm diagnosed with T1N20M I think that's how you write it 3mms base tongue tumour and secondary cancer in lymph node.

I opted for the Pathos trial. I'm having lymph node removal this Monday morning (25/3/19). Then all being well scheduled to have the tongue surgery by TORS robot on 2nd April. I'm expected to fit group B. This means to have five or six weeks of radiotherapy. It depends on the testing of the pathology though and if anything extra is found I'll get moved up a group and get Chemo as well.

In one way I can't wait for it all to start, also terrified all at the same time. I laid my Mum to rest yesterday so feeling a massive whole in my life too. I know I need to be the utmost of positive about this and I will some how! 

With best wishes.. we are going to be fine.

Hi Susiewoos, sorry to hear about your mum! I know it’s not easy but it’s the best that you can do to cope with everything life has thrown your way! Meditate, keep a diary, read positive and uplifting books. 

 It’s a good thing you have the surgery, in my staging it can’t be unfortunately. Not at the moment , anyway. My tumour went into my lymph nodes and quite close to the parotid vein.  But so far after 2 rounds of chemo, the PET scan showed that its responsive and it did shrunk some. 

I wish you all the best, hang in there. And be strong. We will get through all this with no doubt. 

 All the best , hugs x

Hello lovely, just came across your post and noticed you are having surgery tomorrow. I just wanted to wish you well. From your post it sounds like you are going through a very tough time. Take a moment at a time, and remember you now are a member of a very special club. We never meet, but we pay our dues, and we all know how the others in the group feel. All the best my friend xx

Andrea, thank you. I'm calm about the lymph node surgery for some reason. I've been gardening on and off today although really tired and I've taken my 9 year old to the park. I probably should have not been doing that but I needed to keep busy and my Mum loved gardening & I wanted my pots at least to look happy for when I come out of hospital! I'm not calm at all about the TORS  .. As I know from what I've been reading here what is to come. 

You are right though, take each day as it comes and live in the moment has to be the way to get through this mountain climb.

Thank you so much for taking the time to reply. My journey is only just beginning but I'm determined to try and keep my sense of humour somehow

All good wishes x

Hi Suziewoos

Good luck with your neck dissection tomorrow.

I had a neck dissection and TORS at the same time in June 2018 followed by radiotherapy which finished in August.  I'm also taking part in the Pathos trial.

Any questions do ask.  There's so much support on this forum.

I wish you all the best.

Linda 

Hi Linda, 

Thank you for your well wishes. I only came home yesterday. I felt like vomiting & had the sweats so they put me on oxygen. All went OK but the scar is a lot bigger than I expected. I was expected to leave with just Paracetamol but husband insisted I had something stronger. I have to say I was in pain most of the night & still am. Disappointed in the pain management & now totally terrified of the TORS. I get the pathology results this afternoon. I hope you're well?

X