Palliative Care – it might just save your life

Palliative Care – it might just save your life

When you've been diagnosed with cancer at an incurable stage, certain words start to mean more. Take 'palliative' for example.  Before I was diagnosed, I had always associated the word 'palliative' with someone who had a terminal disease, and this type of care was to make the final days/weeks as comfortable as possible. So, it was a bit of a shock to find out in 2010 that my treatment was palliative in nature. However, I'm still not dead and I'm still receiving palliative care. Go figure! The answer is simple - the cancer story is changing. What was once feared…
Not every illness is visible

Not every illness is visible

I personally don't see myself as 'disabled' but I do have an invisible illness.  I can see it and I don't necessarily care if others don't. I'm fit, can walk for miles, I even look quite healthy.  However, I live with the consequences of Neuroendocrine Cancer. These consequences differ from person to person but I know that some people with this disease have even met the criteria to be officially classed as 'disabled' through government schemes.  Judging by what I read, I have less debilitating issues than others, so I feel quite fortunate. That's not to say I don't have any issues at all - because I do!I…
Low and High Residue Foods

Low and High Residue Foods

It's clear that no single diet is suitable for everyone, there are just too many variables in Neuroendocrine Cancer. They are a heterogeneous grouping of cancers with different issues; and to a certain extent, different types and different circumstances can throw up different problems.  If you’re not careful, you can go into the 'nth degree' on this subject, so tailored advice from a well-versed registered dietitian is always the preferred option.  I wanted to look at particular circumstances in this article as a low residue diet may be unsuitable for many Neuroendocrine Cancer patients. A low residue diet is sometimes…
A tumour-finding probe improves the ‘effectiveness of surgery in Gastrointestinal neuroendocrine tumours

A tumour-finding probe improves the ‘effectiveness of surgery in Gastrointestinal neuroendocrine tumours

A major challenge that cancer surgeons face currently is that there are no reliable methods to identify the tissue type during surgery (other than fast tracking tissue sampling). The surgical procedures, therefore, rely extensively on the experience and judgment of the surgeon to decide on how much tissue to remove around the tumor margins.  Sometimes this can result in the removal of excessive healthy tissue. On the other hand, not removing some tumour cells can often need a follow-up surgery to remove residual cancer tissue. This just adds to patient morbidity and long-term detrimental effects on the patient’s outcome. The use…
Neuroendocrine Cancer Diarrhea- building the jigsaw: Bile Acid Malabsorption

Neuroendocrine Cancer Diarrhea- building the jigsaw: Bile Acid Malabsorption

Before progressing, I wanted to emphasise this is not necessarily the same type of malabsorption caused by exocrine pancreatic insufficiency (EPI) which can potentially lead to something known as steatorrhea (amongst other things) but it can produce the same effect.  Steatorrhea is different from bile acid issues and is more related to fatty acids. But it's another piece of the diarrhea jigsaw. Bile Acid Malabsorption (BAM) and Bile Acid Diarrhea (BAD) Post-surgical diarrhea is probably something to expect in the early days and after time, adjustments can be made to cater for these side effects.  With NETs, particularly where there…
Small Intestine Neuroendocrine Tumours:  “No other cancer really looks like this”

Small Intestine Neuroendocrine Tumours: “No other cancer really looks like this”

It's known that Neuroendocrine Cancer is quite different in many ways from other cancers, notwithstanding the misnomer term carcinoid which is thankfully being slowly moved out of terminology.  As a few examples:It's a wide spectrum heterogeneous cancer group with indolent isolated small tumours at one end all the way across to extremely aggressive metastatic cases at the other end.It's a cancer type that can be syndromically functional or non-functional to add to diagnostic and management challenges.It's a cancer that can appear almost anywhere in the human body.One of it's less well-known traits is the ability to produce multiple primary tumours. …
20th November 2010 – feeling perkier

20th November 2010 – feeling perkier

Every year I cast my mind back to this time in 2010. Diagnosed on 26th July that year, I was in hospital from 8th - 26th November, an extended period due to complications.  At that point, I had been keeping my diagnosis within close family and friends and my manager at work.  People at work and my wider list of friends were probably wondering what was going on with me.  Cleary, I let my emotions slip by posting this on my personal Facebook profile on 20th November 2010. Perhaps this was my way of opening up.  To be honest, the first…