Campaign to have full body scan after first cancer diagnosis - your help and input

Hello everyone. Firstly I recognise that being a member of this forum means you’ve sadly and cruelly lost someone to this brutal disease. I am very sorry for you. 

Its been 2 years since I lost my husband of nearly 30 years Andy, aged only 49 and leaving behind 3 teenage daughters. 

There had been a catalogue of misdiagnosis before he eventually was diagnosed with mouth cancer, endured a brutal tongue replacement operation and rounds of radiation to his head which was truly debilitating. However he got through both but continued to feel pain in his neck, chest, back but was continuously told it was normal after such a brutal operation. He was sent for physio. 

We continued to ask how do we not know if there is cancer in other parts of his body - at the stage he was originally diagnosed and post op as there had never been a full body scan. We were fobbed off with “we look for certain markers”.

At one appointment 6 months after his original diagnosis, the consultant looked him in the eye and said “Andy you are cancer free I assure you”. 7 weeks later he died. 

He could not accept what the Consultant had said and so in such pain, he admitted himself into A&E, was diagnosed with metacised lung cancer, nothing could be done, and died 7 weeks later. 

My oldest daughters were in the middle of their A levels but he died 2 weeks before they got their results. He would have been off the radar with pride. 

My yougest daughter was only 14 and has had to finish her schooling without her dad for guidance, love and support. 

Im now facing my middle age years which we were starting to plan for, without a husband and friend, and shortly when my daughters will all have left home and Andy and I were still young enough to enjoy adventures together whilst we were young and plan for when we would be old, I am completely alone all day, all night. Esther rantzen once said “I’ve got lots of people to do something with, but no one to do nothing with”. So true. 

My daughters lost their dad before they’d even finished school. They won’t have him their for most of their important firsts - GCSES, A levels, first boyfriend, degree, first job, first house, husband, first children, career,....the list goes on. That’s not right. 

My sadness and indeed anger is that the medics weren’t mind readers, they didn’t know if Andy had cancer elsewhere and indeed he did but after he himself admitted himself into A&E it was all too late.

Was his lung cancer there at the same time his mouth cancer was diagnosed? He had a cough - maybe.  Or maybe even before?

Was his lung cancer the primary cancer and his mouth cancer the secondary? If so, he could have been treated a year before and who knows....

So many more questions but my point is, had Andy on the first diagnosis, been given a full body scan, could he have been saved if the lung cancer had shown up? 

I believe he’d have had a chance  To have had at least some treatment which may have prolonged or even saved his life  But the option was never there  

A close friend tragically recently lost her 16 year old daughter to a brain tumour just over a year after diagnosis   it metacised to her spine and she endured the most brutal pain imaginable  but lost her beautiful life leaving behind another shattered and broken family  She wasn’t ever offered a full body scan at the first diagnosis and so, like Andy, if she had, a year earlier, could she too have been bought some time to receive other treatment which may have changed the outcome?

How many more lives have been lost and families ripped apart in this way? 

I guess the political response would be “budgets” but surely a number cruncher could work the figures and compare the cost of a full body scan at first diagnosis to the prolonged treatment and palliative care further down the line ?

Have i sparked something in you that has made you too think that your outcomes could have been different?

i don’t know how, as this sort of thing is so alien to me, but I want to start a campaign, a petition or something for all cancer patients, on first diagnosis, to be offered full body scans  

I’m sure I’ll be slapped down from the offset and bamboozled with figures and stats that show it would make no difference and cost too much for it to happen  

Im guessing there are millions of us out there who would think to themselves what I’m thinking but truly believing  

Where do I start? How can I do it?

i need your stories, your help, your guidance, your advice to at least look into it further