Stage 4 neck cancer

Hi Spanglesx, welcome to the group but I do wish that I had met you elsewhere but here we are and we've got to get used to it. So sorry to read that you have been diagnosed with stage 4 neck cancer, I have incurable bone marrow cancer and was diagnosed in March 2015. So there's always hope, hope that new cures are found and hope that you can receive treatment to delay or halt the progress. Although you've been told that the average lifespan is about 2 years, that's based on old figures and there's always the possibility that new treatments are found or there are trials in which that your oncologist can find a space for you. 

It's a real shock to the system to be told that you have an aggressive cancer, of course it is and there'll be all sorts of things running around your head. It's certainly difficult to process but trust me you'll get over the initial shock. Try to stay positive and in time you'll be able to rationalize your situation with a clear head. Life is for living. 

Keep in touch Spanglesx, there'll be others coming after me to welcome you here. These people will become close friends, they're sympathetic, empathetic and respectful. We're all in the same boat and we know exactly how you feel.

Take care 

Tvman x

Thank you for your kind words Tvman. Glad to hear you are hanging in there....I am still in shock but am sure I will use this forum to help with my fight x

What a shock for you.  

I suggest to try not to focus on the prognosis.  I was told 5 years, and two years without treatment, in Dec 2021.  And then I came on here.  I read all about treatments, prognosis and statistics,  I learned how they were compiled and their generalisation.  No factor is taken for how your body will respond to the treatment, so it's all an average based on 5+ years old stats.  5 years because that's how long the stats take to be compiled, to being public.  

I know it's easier for us, because we've already passed this stage.  But what I did was to try and forget about the long term, and the "what-if?", but break the "now" into small steps which weren't that far away.   Yours might be the dental check, or starting RT.  

The medics see this every day, but for you it's real, the now, and personal.   They will always do their best for you including accelerating treatment or emergency slots. 

It does get better - I noticed when the crying stopped. 

Hi Spanglesx 

You have some great advice from tvman and Mmum already.

i am one of the Community Champions on this site, living with metastatic breast cancer  

It’s a horrible shock to be given such a blunt prognosis. Try to push it to the back of your mind and as Mmum says, tackle the here and now. That dental check is urgent, and if you explain your situation, you should be able to get an urgent appointment. Similarly if you need dental treatment, make sure they know your situation so you can get treatment done urgently. I would also recommend making sure you have got the life admin in place - up to date wills, lasting power of attorney for both medical and financial matters, organised records of your financials, where things are etc.

Then the practical issues of getting through treatment. I would imagine eating and drinking during and after radiotherapy will be difficult. Have they given any advice on this? You mention you live on your own but do you have family and friends who you can ask to help with practical matters? When a friend of mine needed daily radiotherapy for 5 weeks for glioblastoma (and was no longer allowed to drive), he organised a roster of people to take him to the hospital and provide tea or coffee afterwards. It was effective in giving both support and contact. 

Hi sweetheart, and another warm welcome to the forum from me, and hope you find it a wonderful place for support and advice, we've all found it, as well as a place to meet some amazing inspiring people, make friends who all understand what you're going through, who'll be there for you no matter what you need, for support, a chat, a moan/rant, a shoulder to cry on, to share our stories or have a laugh.

Like the guys have already said, a prognosis is little more than a guess, using statistics years old,

My friend I'm a 4 years, retired nurse, with 15 years experience, 5 of which were in palliative care, and of all the patients I  saw only one's prognosis was accurate, the vast majority living well past their supposed time, and with the amazing strides in therapies and medicines since, and seemingly new treatment breakthroughs every month, those 5yo stats behind your prognosis are getting less and less relevant. Hey we've even had a couple of the guys, who are NED, 

I know your not new to cancer, that our prognosis changes things, and the early days are the worst, so please keep in touch, and I  wish you every success with your radiotherapy and chemotherapy, and remember there are other tools in the toolbox.

love Eddie and family xx 

Hi Spanglesx

So sorry you are here. It must be devastating to hear the news. Be kind to yourself and allow time to absorb the shock. I would also like to add to consider 2nd opinion if you are not treated by a major cancer centre/ teaching hospital. Also maybe let them know that you could be interested in clinical trials down the line. 

Some patients can show remarkable response to radiotherapy/ chemotherapy. Albeit they are the minority but there is no reason why it would not be you. 

You will come to accept this and move on with your treatment over time. Take care 

Stella x

Bless thank you. I went to Macmillan drop in today to ask why if they said 2 months with no treatment and then the dental and radiotherapy takes me so close to that am I doomed it doesn'take sense. I had emailed and called the  cancer nurse but no reply. They were great and by end of today I had a phone call to go in tomorrow to see consultant again. They victim shamed me by saying the meeting didn't go as planned and I asked questions. These deviated from the way they wanted the meeting to go. Also said if I had not said I needed to leave them they would have booked me in for dental today. I will have to have dental next week now cos they only have 3 slots on a tuesday morning. They asked me to sign the forms before I left so not sure why they didn't say we understand but can we book you for dental tomorrow. Also said that they believe I have longer than 2 months. I hope to sleep tonight. X

Thank you Stella for good advice x

Hi coddfish. Thank you. I have a small group of friends and a sister nearby. Thankfully my sister will take me to my daily radiotherapy appointments. I have a solicitor friend coming to see me next week to write a will. Macmillan said about poa today so I will speak to my sister as I hadn't thought about that but good idea. I hope you are doing well x

Thank you Ediel. The kind and encouraging words on here have already been great to read. I think as it is so soon after being told I'm on bit of a tidal wave of emotions. I know with time I will be better at coping with this news. I wish you well x