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

2 minute read time.
How a cancer diagnosis is communicated – your experiences with online test results

The following blog is posted on behalf of . John is one of our Service Knowledge Specialists working to deliver best practice within the Macmillan Nurses team.

In today’s blog, John is looking at the rise in NHS hospitals delivering cancer test results online, as well as the impact new services like this can have on patients. At the end, he’ll be asking for you to share your experiences with any of the topics mentioned in this blog.

How much information do you want?

Finding out that you have cancer can be a shock, even if the cancer diagnosis was strongly suspected.

Some people try to learn as much as possible about their diagnosis. Being informed can help when talking to medical teams or telling family and friends. It can also help people feel involved in their care, and more in control generally.

Other people prefer not to know all the details of their illness. They may be more comfortable leaving treatment decisions to their healthcare team. What’s important is that everyone has the choice to get the information that is right for them, at the right time.

Information at the right speed

Our Macmillan Support Line Nurses often see trends before anyone else. They have seen an increase in queries from people getting their test results online. Some people have reported receiving their results before seeing a specialist for a diagnosis.

In April 2023, hospitals in England were asked to start delivering urgent referral test results within 10 days. Access to results through the NHS app, NHS website, or a local GP practice app has also aided faster delivery of results.

Online results and diagnosis choices: your experiences

Our team would like to hear more about this experience from the experts: you.

Did you read your test results online before you were given a diagnosis? How did that feel, and what did you do with that information?

Were you given a choice about how to receive your diagnosis, and what did you choose?

We are also hearing that some people are receiving their diagnosis by letter. We’d like to know about your experience of this. Was the letter addressed to you and easy to read, or was it a copy of a letter from a specialist to your GP? Were contact details given so you could speak to someone and get information and support?

Loving the NHS, helping it improve

It's important to know that we are not criticising the NHS. Everyone in the Macmillan Nurse team trained and worked in the NHS. We know that a quicker diagnosis and reduced waiting times can often lead to better outcomes in cancer care.

We also know that one size doesn’t fit all. Some people may prefer a telephone call instead of attending another hospital appointment. Others may choose to have a video call. If you opted to receive your diagnosis outside of a face-to-face consultation, we’d like to hear from you too.

Share your experiences with us

Please tell us about your experience in the comments below. You can also share your thoughts on our dedicated discussion thread here: Blog Discussion - Online test results.

Your responses will help us to adapt our practice to this fast-changing situation. We also have colleagues in Macmillan who work closely with stakeholders in the NHS. They can use your comments to help the NHS improve their service so they can get it right for everyone.

Thanks for reading, and we look forward to hearing from you.

John N - Macmillan

Service Knowledge Specialist
Cancer Information Nurse Specialist team
Macmillan Support Line

  • My experience was not good. It started well, the gp referred I got a phone call the next day for an MRI scan the following day, which I had with no comment. I received the paperwork for a 2 week accelerated programme the following morning. I read and rang to say I was on holiday for the next 10 days. The admin person booked me for a biopsy the day after I got back. 

  • I went to the biopsy hoping I might be given some information. I asked what the mri showed and was told 'I have not looked at it but there must have been something on it or you would not be here'. I was not permitted to explain. I went ahead with the biopsy ( which was interrupted by a fire alarm so only 6 cores were taken).

  • I then got an appointment for a chest scan and no one could/ would explain why a chest scan was needed for a prostate problem. I received a letter for an appointment with the urology consultant a couple of weeks later. 

  • I was seen by an assistant who invited me into a room where there was a work experience student present. I was told 'I am sorry to tell you that you have prostate cancer and you are being put on Hormone Therapy for life'. 'Do you have any questions?' How much cancer is there? 'It was present in two of tge cores' How much cancer was in the cores? 'It is a Gleeson 3:4'. Yes but how much cancer was in each sample?  'I don't know'.what did the MRI scan show. 'I don't know, I have not looked at it'. Are there any alternative treatments? 'I will go and ask tge Consultant' ( left alone with work experience student!).

  • After having had cancer twice in 2001 and again in March 2021 where I and my Husband were told by a consultant at the hospital together with the relevant treatment plans, I was shocked to get an electric letter of the outcome of my Pet scan that the MDT team deliberated over.