Neck Cancer How Do U choose treatment Plan? UGHHHHH

Hello

I'm really sorry you're in this position, it must be overwhelming. All I can say is that it's over 3 years since I finished CRT (without surgery, see my profile for more details) and the only side effect I'm left with is a dryish mouth. The doctors are obliged to tell you all the possible side effects for informed consent, even though most people don't get most of them. 

Wishing you all the very best, whatever you decide

Catriona

It is hard when you are given several options. I was lucky and was only given one option which was surgery (for jaw cancer not tonsil cancer) followed by radiotherapy but no chemo. I took my medical team's advice and this is what happened. I started my jaw cancer journey in 2013 and have had another 2 ops since then plus another lot of radiotherapy. I have had good results and am living a happy life in spite of some long term effects. 

Discuss in detail all the options with your medical team so you fully understand their thinking and then you can weigh up the pros and cons.  For some surgery is not an option as Dani and Hazel will tell you so radiotherapy and chemo is the way forward and they have both had great success with their treatment.  For others surgery to remove the cancer and depending on clear margins then radiotherapy and chemo. is the way forward. It depends on your particular circumstances. Discuss with your medical team why you are being given so many alternatives.

This is a very stressful time for you but once you decide on the treatment and move forward it does become easier. HPV driven cancers have a very high success rate with treatment. My cancer was not HPV driven but I still have had great success with my treatment.

Lyn

Good morning, as a fellow wife I feel for you, I can only tell you about my hubbies story, he didn't have a choice,surgery was out of the question,his cancer was a little more advanced, he had to have 30rds of RT and 2rds CT,Cisplatin, his side effects started to kick in from about 3wks in. Now, 15ish mths post treatment he is coping with a dry mouth,especially in the morning,lack of saliva and he still gets tired easily,his taste buds are not back to normal.The chemo has more then likely caused hearing loss,he had to opt for hearing aids at the end,given the nature of his job,these were strongly advised. He is given the 'cancer free ' status for now, I am grateful he is still with us,couldn't think about the alternative. What ever you will decide, I am sure it will be the right one. All the best for your journey.  Hugs Mel x

Hi again

I was stage 2 with no nodes so got away without chemotherapy BUT.....CRT is gold standard for HNC,  it works and most of us make a good recovery.

Not so many folk have chronic tinnitus and if you are really worried about it you can opt for carboplatin which is less ototoxic.

DsBish said:

so many possible long term negative side effects...kidney issues etc...chemo is almost as scary as cancer!

Not so many. They won't give you chemo if your kidneys are suspect. You are checked before every dose. How old are you? The younger and fitter you are the easier it is

There have been de escation trials for a good few years and oncologists are still giving us 6/7 weeks CRT. That tells you something. Me? I'd only join a trial if I was dying. 

I am over seven years clear now and just have a dry mouth at night to put up with

This is a terrible choice to make, ask your consultant to guild you through the treatments with the pros and the cons of each option. I consider myself lucky in not being given a choice, they told me it would be tonsils out 6 weeks RT 6 chemo 1 a week and a RIG fitted. Try to get as much help deciding as you can.

Ray.

I was not given a choice...CRT... no surgery...PEG fitted...the side effects are pretty grim for most...but if the treatment cures the cancer then the suffering is worth it in the end....IMO

Hi I had 35 radiotherapy and 2 of a planned 3 chemo   C R T aaa my only option as I had spread to soft palate and 7 lymph nodes one too close to spinal cord so surgery would have been too life changing. Cisplatin can be changed to carbonation which is less toxic. My 3 rd chemo was cancelled 

jointly with my oncologist I had completed the 2, very well with no noticeable side affects. Radiotherapy is the main course of treatment chemo add around 5-6%. Talk through with oncology. Almost 8 years since my treatment living a great life I have dry mouth at night and can’t tolerate spicy food. Well worth having the treatment. 

best wishes 

Hazel

Hi DsBish

Like you i have been recently diagnosed with Tonsil cancer, Right side only T2N2M0. I begin my treatment this coming Monday, 27th. I have been set on the plan of 6 weekly Chemo's and 30 Radio's. I cant say i am not nervous, but I definitely want to kick this things arse. I have my PEG in place and liquid food delivery has been received. it is a lot to go through just to get to being ready to start treatment. So i feel your pain. And like the few comments so far I wasn’t given much of a choice on the treatment plan, but what i have does seem to be the Norm and very effective.

One thing in my limited experience is that due to historical hearing loss, I have been put on Carboplatin not Cisplatin, as it causes less hearing loss and is also less nauseous. so maybe ask about that if it is a big concern for you. 

I am new to this forum but there seems to be many great people here with scary, but outstanding stories that we can both take good faith from. 

Good like on your journey

Paul

Omg that is just like me and I was actually set to start same Radiation Chemo set up as U on Monday 2....Buuut I am doing a Trial. Feel So very fortunate, at my Chemo consult 2day after I told my oncologist what trial it was he said "Do That!"...No hesitation...what a relief it was after all this anxiety..

I will be having 3 Radiation treatments at 8g then 2 Immunotherapy treatments Prembrolizamab and Evorpacept...then Surgical removal of tumored tonsil and 3 Lymph nodes.

So much less of Everything AND 90 % mortality rate w just way fewer side effects short and long term.

Feeling just grateful and hopeful. And its kinda awesum that one day because of these trials this maybe the standard of care.

I know how you are feeling, I was freaking out 2. Sending you calming vibes, and assurance U got this...We got this!

The Only way out is through.

This site is freaking Amaze we R all out here 2gether, dont hesitate 2 share.

Take Care of U!

LoriAnn 

DsBish said:

I will be having 3 Radiation treatments at 8g then 2 Immunotherapy treatments Prembrolizamab and Evorpacept...then Surgical removal of tumored tonsil and 3 Lymph nodes.

Have you the name of the trial? 

EDIT

I found it. It hasn’t a name just a bunch of figures. It looks exciting. So far they have found no cancer cells in the excised tissue after the adjuvant therapy. 
it’s a phase 2 trial against standard treatment so you’re lucky to have drawn the long straw. 
8Gy of radiation you won’t even feel. 
Do let us know how you get on