Chemotherapy after unsuccessful neck dissection

Good evening Sky1, I had a full neck dissection when I had my operation followed up with a course of radio and chemotherapy, both of these did not work as it came back in a different area of the mouth so I had more surgery but no radio or chemo as I was on my limit for radio after my first operation. Thankfully they managed to cure it for me. With your partner, the chemo will help to contain the tumour and keep it in check and can in many cases shrink it so it's more manageable stopping the tumour spreading and growing. I have heard of people who have had this and can enjoy quite a normal life by suppressing the tumour. Hope all works out for you both, best wishes.

                                                                                     Chris x

Hi Chris, really sorry to hear this, but glad they managed to cure it. It’s not easy going through the operation never mind the treatment.

its my friend who is going through this & unfortunately they told her yesterday that the radiotherapy will be too much for her as she had it for  6 weeks 2 years ago when she 1st got diagnosed. They are worried it will cause too much damage to her neck as the scar from the operation is it healing very well & that’s been 2 months. 

they spoke about chemotherapy yesterday but we couldn’t really take it in as they kept saying they can’t cure it, but before the operation they told us this would cure it so we were all so positive even after her recovery from the operation hasn’t been the greatest. 

it’s heartbreaking we are now at this point after everything she has been through. But it is cancer after all it’s the devil. 

thank you for your information it helps when someone else has been through it. We are based in Glasgow so will be the beatson she will attend. We’re you the same? 

many thanks x

Good evening Sky1, sorry i said your partner instead of your friend, yes it was a long and complicated journey for me, its lovely that you are posting on here for your friend. This is the trouble with radiotherapy as it can cause a lot of problems with healing it can damage the tissues etc making healing slow at times. I like your friend can not have radiotherapy in that area again so i understand why the consultant has said it will cause more damage to her neck. 

    I dont understand fully the way things work with chemotherapy only that they can use it to try and control the cancer and stop it spreading, so they can try and hold it back for a period of time, i have heard of positive stories from doing this.

   I think its a bit naughty of them to say that this will cure it as nobody really knows the outcome, i think they should not use this word so early on after surgery and treatment. I was only given the all-clear about two years ago after 10 years of being cancer-free, his words were "there is not much chance of it coming back " .

   The fact they are giving Chemotherapy means they are not giving up hope, so hopefully, by having this done it will hold the cancer back, i certainly have my fingers crossed for you and your lovely friend. I live the other end of the country,in Kent so all my chemo and radiotherapy was done in Maidstone Hospital about a 15-minute drive away. Sorry, i have waffled on a bit but i just want to say good luck for the future, fondest wishes.

                                                                    Chris xx

Hi Chris, thank you so much for your message, this has really helped me a lot, we go on Friday to find out all the info on the chemotherapy treatment & I have so many questions to ask them now on her behalf as she is still in a lot of shock. I wish you well & thank you so much for your reply’s it’s so nice to see someone with such kind words at such a different time. 

xx

No worries Sky 1 you and your friend are very welcome, please re-post on here if you need help or advice after your appointment on Friday and we will only be too pleased to help. Take care .

                                                                 Chris x

Hi Chris, just wanted to let you know we went to my friends appointment today & she got another consultant, it was the one she has been dealing with from the start!  & he has offered her 5 weeks of radiotherapy!!! said the cancer has came bk sooner than they would have liked but she can cope with radiotherapy even with all the side effects!! We are so happy with this result as she has did it before she can do it again. 

the cancer still won’t be cured but can be treated, he said it’s 1 inch & 1/2 in size & only in one area in her neck under her jaw line so they can target only that area & if it gets too much she can stop it at any time! We spoke about CBD oil also so I’m trying to source that for her just now. 

can not believe today’s outcome I feel like we have hope back & Have something to fight for again. Thank you so much for your kind words of support they really did help so much.

xx

Wow Sky , i certainly was not expecting this as I have said before when they keep changing consultants it can go wrong so it very pleasing she is seeing her original one, it sounds as if the area they will treat is in a slightly different area so can offer more radiotherapy are they still going to do the chemo as well. I have dont know much about CBD but it sounds pretty good. Im soooooooo pleased for you both plus it has put a big smile on my face. All I can say is good luck with the treatment. We are here if you and your friend need further help or advice. Very best wishes to you both , take care. 

                                                                                            Chris xx

so sorry you both find yourselves on the treatment treadmill again. 
if you ever have to go down the chemotherapy route do please ask after immunotherapy. Standard platinum chemo for recurrent disease doesn’t produce very good results but there are trials adding Pembrolizumab which look very promising. 
I tried CBD oil. I don’t know what it’s supposed to do with cancer but it interferes with some chemotherapy ( sorry don’t know which) and causes a dry mouth which is one thing us OP cancer sufferers don’t need. 

Good luck. 

That’s good. Have you considered Proton Beam Therapy (PBT)? It’s a more precise and concentrated form of RT. There is sometimes more opportunity to have this in the same area of previous RT. However the NHS commissioning policy limits when PBT can be deployed and there are limited UK facilities. Maybe worth a conversation though.