Scans

I had scans in December and March but was informed I was doing well on immunotherapy. However a different doctor ordered a scan in June and discovered the cancer had returned and spread to my liverpossibly in December as immunotherapy was not working. I have another scan coming up and will insist on scrutiny! Needing heavy chemo again to try to reduce the damage. Just completed another 4 cycles.

What is the point of scans if they do not identify cancer ! What a waste of NHS resources and leaving us the patients at the mercy of accurate reporting of our scans. My GP has now requested a second opinion of the scans from another hospital. 
Really hope your scan is positive x

Hello Sue m,

 I am so sorry to hear that.

After having extensive scans that must be an awful blow. 

I can only speak from my own experience where when the GP first sent me to the hospital, suspecting cancer an MRI was requested and took place and I still wasn’t diagnosed. There was a highly visible external lump which was bleeding continuously, extremely painful and was told it was either an ulcer or skin tags

It was only after the biopsy which took place 7 months later that I found out it was cancer. I have never had a PET scan. 

It does sound extraordinary that your tumour was missed after 3 scans. Has your Oncologist given any explanation? I can completely understand your lack of confidence and hope that you get some answers.

xx

Nobody will give me a straight answer why it was not picked up. Unfortunately I have now involved the ombudsman after reading a report by them after my experience of patients lives being put at risk because on inaccurate reporting on scans. My GP also getting second opinion from another hospital as like me can’t understand how scans missed it. 

I think you are right to pursue this. It’s incredibly important that scans are reviewed accurately and must be beyond frustrating that you can’t get a clear answer. I have worked in healthcare for most of my career and know that sadly no one ever admits liability but this is life changing stuff.

Obviously since the cancer has spread I can imagine your feelings of anger and frustration. Your GP sounds on board in helping to get a second opinion. As I said, I really hope that you get some answers.

The diagnosis is hard enough and it helps to have confidence in the process. Please keep us posted in how you get on if you are able. Xx

Thank you so much for words of encouragement. I keep questioning myself , should I just let it drop , in my head I am thinking I cannot change my journey but may be make things safer for those who come along behind me

I personally think that you shouldn’t let it drop. If there are answers and some accountability then that should be addressed. As you say, it’s likely to help others.

I had to involve PALS ( patient advice and liaison service) last year just to get my biopsy results which had been lost and was still waiting after 6 weeks. I look back on that now and think what on earth was going on. There were lots of errors in my journey to diagnosis and treatment and while I don’t expect perfection, I do expect  some degree of trust and professionalism. I regret not having pursued it more. It’s important. 

A formal investigation may show some important findings which could be life changing for others. I am also sorry that you are having to go through this while coming to terms with your diagnosis and the treatment ahead. 
Stay strong xx