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

A radiologist makes a report to your oncologist apparently, but the oncologist can look at the scans too. My cancer was very visible, in hindsight . Thank you for your kind thoughts.x

Hello Sue m

You aren't being unreasonable in the least, I am horrified on your behalf and have never heard of what, on the face of it, seems to be outright incompetence.  I know it won't change what happened but carrying on at the highest level with your complaint is the only way that things will change.  It must be all-consuming thinking of all the 'what ifs' right now, and I am relieved that at least your GP is completely on board and being proactive on your behalf.  Is there any chance you can change your entire ongoing treatment and check-ups to the second hospital?

I am wishing you all the best in your escalation of this to the highest level, please let us know how you get on.  And of course, I am keeping everything crossed that the second set of scans are clear.

Big hug

Irene xx

Verbena in Spinney

I am really so sorry to hear this, it is horrifying that in your case too there seems to have been extremely poor interpretation of scans and that progression was missed.  I am not surprised that you you are insisting on very close scrutiny.  You are in such a difficult position if you are still undergoing treatment at the same hospital but at the same time are inclined to escalate your case.

I hope that your are coping well with the chemo and wish you all the luck in that your next (accurate) scan is clear. 

Big hug

Irene xx