Supporting the

Neuroendocrine Cancer Community

Do you C us? Bob’s story

Aug 11, 2021

The ‘Do You C Us?’ campaign is raising awareness of the challenges facing people living with rare and less common cancers.
 
Robert (Bob), Neuroendocrine Cancer patient has joined the campaign and shared his story:

“I was first diagnosed with ‘bowel cancer’ in my late thirties back in 1985. Things have changed a lot. When I was first diagnosed nobody mentioned cancer. I didn’t realise that was what I had until I was in the hospital for my operation. Now they want to tell you everything, even if you’d rather not know.

I was scanned regularly after the operation, but two years later I was diagnosed with secondary liver cancer. I hadn’t taken anyone with me to the appointment and I don’t remember the drive home. Telling my wife and children was quite difficult, especially as at that time I did not know how serious my condition was.

I was ‘transferred’ to the Hammersmith Hospital for further treatment and I asked the Consultant if I would live and waiting for him to answer was the longest ten seconds of my life. The doctor said he’d expect to see me in ten years. I was only in my late thirties so that didn’t sound great to me but the doctor pointed out that a lot can happen in ten years in medicine and it’s transpired that he was correct.

I underwent several different types of treatment to manage the tumours in my liver and then my Consultant was taking up a position at The Royal Free Hospital and asked if he could ‘take’ me with him, to which I agreed. I began self-injecting with a drug as part in a clinical trial in 2001. Then in 2003 I was diagnosed with kidney cancer and had to have an operation to remove my kidney.

A little more stress as I had handed in my notice and was waiting to start a new job. In the end they were great with me. I had no symptoms so in some way I feel fortunate that I was already having regular CT and MRI scans and this tumour was spotted.

The scans have since revealed that I have tumours in my ribs and femurs and that the tumours in my liver have grown. The GP gives me regular injections of a drug to help manage the tumours, and general health, and in February 2020 I had the first course of radiotherapy (PRRT). Unfortunately, I became very unwell after this bout of treatment with pneumonia, and blood clots in the lungs.

Looking back, I think I caught COVID, as COVID only seems to have been officially recognised late March 2020. I was unwell for a long time. I’m going back for further PRRT this month. Although I’m a little apprehensive about it after last year’s session, I need to get back to normal.”

To find out more about the Do you C us? campaign, click here.
To read more patient stories, click here.