Terminal cancer - Ronny Allan - Living with Neuroendocrine Cancer

Tag: Terminal cancer

Terminal cancer refers to cancer that can’t be cured or treated. It’s sometimes also called end-stage cancer. Any type of cancer can become terminal cancer. Terminal cancer is different from advanced cancer. Like terminal cancer, advanced cancer isn’t curable. But it does respond to treatment, which may slow down its progression. Terminal cancer doesn’t respond to treatment. As a result, treating terminal cancer focuses on making someone as comfortable as possible (e.g. hospice or end of life care

Generally, terminal cancer shortens someone’s life expectancy. But someone’s actual life expectancy depends on several factors, including:

the type of cancer they have
their overall health
whether they have any other health conditions

Doctors often rely on a mixture of clinical experience and intuition when determining someone’s life expectancy. But studies suggest that this estimate is usually incorrect and overly optimistic.

To help combat this, researchers and doctors have come up with several sets of guidelines to help oncologists and palliative care doctors give people a more realistic idea of their life expectancy. Examples of these guidelines include:

Karnofsky performance scale. This scale helps doctors evaluate someone’s overall level of functioning, including their ability to do daily activities and care for themselves. The score is given as a percentage. The lower the score, the shorter the life expectancy.
Palliative prognostic score. This uses someone’s score on the Karnofsky performance scale, white blood cell and lymphocyte counts, and other factors to produce a score between 0 and 17.5. The higher the score, the shorter the life expectancy.

While these estimates aren’t always accurate, they do serve an important purpose. They can help people and their doctors make decisions, establish goals, and work toward end-of-life plans.

27Nov 2022 by Ronny Allan 5 Comments

Incurable isn’t terminal

Patient Advocacy

OpinionWords are important I was diagnosed with stage IV cancer in 2010. OK, it wasn't a really aggressive type but it had caused a lot of damage. It's amazing to think that someone is still adding to their stage IV cancer story after 12 years. You can read a chronological list of what happened to me and what treatment I had (and still get) by clicking here. So, am I terminal? No, in my opinion, and by any stretch of the imagination, someone who has lived with stage IV cancer for 12 years cannot be considered terminal. Let's look at some definitions which are generally agreed with similar wording wherever you look: Terminal Cancer Terminal cancer refers to cancer that can’t be cured or treated. It’s sometimes also called end-stage cancer.…

25Apr 2017 by Ronny Allan 15 Comments

Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor (and where to find a NET Specialist Worldwide)

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

On the day I was diagnosed, I hadn't really thought about questions, the only one I actually remember asking was "how long do I have left to live" (I watch too many movies!). On the day of diagnosis and period beyond, people tend to feel emotions of shock, denial, anger, and sadness, before going on to accept their situation. Yes, I 'googled' but not a great deal really - although some things I found did frighten me. I wish I had found this article way back then.As things progressed in the weeks after 'D-Day', I started to work out the sort of things to ask but even then, it was limited. I had been referred to an experienced NET team so I felt confident they would do whatever needed doing.…

06Apr 2017 by Ronny Allan 2 Comments

Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Edited and refreshed 16th March 2023 OPINION There's a lot of inaccurate and out-of-date information out there. Some are just a lack of understanding, and some are caused by out-of-date websites. Often the problem is a result of patient forum myth spreading exacerbated by poor moderation in the groups concerned. Some can only be described as propaganda. Some of it even comes from uninformed doctors and bizarrely and disappointingly from NET advocate organisations. All the graphics below contain links to relevant blog posts. Myth 1: All Neuroendocrine Neoplasms will metastasiseSimply untrue. They are a heterogeneous group of tumours. Read more here[caption id="attachment_38543" align="aligncenter" width="640"] Click on the picture to read more[/caption]Myth 2: All Neuroendocrine Tumours are terminalNot true. By any definition of the word terminal in a medical diagnostic context, most NET patients…

02Feb 2016 by Ronny Allan 21 Comments

Neuroendocrine Cancer – Incurable is not untreatable

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

OPINION. When I was being officially told I had advanced and incurable cancer, I did what most people seem to do on films/TV ..... I asked "how long do I have". The Oncologist started off with " ... perhaps just months ........". That must have been quite a shock because for a few moments after that, I heard nothing - my brain was clearly still trying to process those words - I wasn't even feeling unwell! The really important bit I missed was him go on to say "...but with the right treatment, you should be able to live for a lot longer". Fortunately, my wife Chris heard it all and I was refocused. "OK Doc - let's go" I said. Always take someone with you to take notes at important meetings with…