How a cancer diagnosis is communicated – your experiences with online test results

I'm one of the lucky ones. From pathway referral to diagnosis was fast and face to face, in 28 days I'd had 2 GP appointments, two consultan appointments and both CT and PET scans. All consultations were face to face. The chest clinic nurse practitioner delivered the first result, saying it was highly probable I had cancer. The chest Consultant delivered PET scan result with the MDT recommendations. He was great, matter of fact with detail and open to my input. Both GP appointments were gentle, the first was my pathway referral, which was just to be cautious, the second was when she'd heard from the hospital, I think she was more surprised than I was with the outcome. I could not be happier with Northamptonshire NHS, they've made this whole process as easy as possible and fast, so i was never left in limbo, waiting for anything. Next I'll see an Oncologist, and from there, who knows? I am for sure grateful that I was not left with technology delivering my results, or even worse, by mail.

1. I have opted to be able to see my medical records on an app.  It's useful to see my history but I don't want to read a diagnosis online.  It doesn't give you the opportunity to ask immediate questions or receive any personalised reassurance.  Following a mammogram I did look at the online test results before I got the letter asking me to go for a scan and biopsy. When I mentioned to the radiographer what the test result had said, she said they shouldn't have used those words as that meant 'cancer' and it was almost certainly not cancer.  It was and the different messages did not help me.  Since the end of radiotherapy no one has seen me, all the follow up has been by phone.  Different people prefer to communicate in different ways and it would be nice if this could be accommodated, though I understand that the time of a specialist is limited. I read the results of my bone scan on a Saturday morning and was really upset. I made myself go out and it was the kindness of a stranger in a cafe that helped put me back on an even keel.  When a letter or email arrives the sender has no idea when or how it will be received.  If I was giving someone bad news I'd want to do my best to support them when they heard it.

I was diagnosed way back in 1999 with a rather rare (7 in a million) incurable type of Non Hodgkin's Lymphoma Skin Lymphoma.

I was told by my Dermatologist that I had Para-Psoriasis..... cancer was never mentioned. I had friends who had Psoriasis so I knew that it was a condition that you lived and worked with and just got on with life.

A few years later I was accidentally copied into a letter to my GP following my 6 month Dermatology clinic appointment and this was the first time I had seen the word Lymphoma.

I contacted my GP and he was very surprised that I had not been told about my Lymphoma diagnosis (I had not seen my GP for a few years so there was not an opportunity for the subject to come up)

So I arranged to see my Dermatologist and we had an 'interesting' conversation. He did say that "....so have you been in any way conceded or stressed about your skin condition over the past few years?"....... and I had to say no, I had not been stressed or concerned. He went on to say "...... well you know that you can live and work with this condition so keep doing this..... yes there may be a time in the future that your condition could develop to the point where more aggressive treatment is required but dont dwell on this"

Was he right or wrong?...... I will say that I did get on with life and work for a further 10 years, took early retirement from my teaching job and a few years later my condition did become aggressive requiring some significant treatment...... but that another story.

Hi can I thank all of you who have shared your experiences. Good or bad. It's helpful for us to understand how well intended changes may have difficult consequences for some.