PRRT and the NHS England Cancer Drugs Fund

Treatment
[caption id="attachment_3922" align="aligncenter" width="425"] cost cutting vs life cutting?[/caption] As of 4 Nov 15, PRRT was delisted from the NHS England Cancer Drugs Fund. Appeals were made but were rejected, despite the glowing results from the NETTER-1 trial.  Although a replacement system is now in place, PRRT remains barred from routine NHS use. Please see the following post for the very latest on PRRT worldwide - CLICK HERE I was extremely disappointed to learn of the decision to remove PRRT (Lutetium or Yttrium) from the Cancer Drugs Fund (CDF) as reported by the NET Patient Foundation. You can read the detail of the decision here: CDF Statement.  PRRT has regularly been described by NET specialists and patients as the "magic bullet" due to its potential to shrink or kill tumours. This is the…
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Neuroendocrine…..the little suckers get everywhere!

Awareness, Technical NETs
One of the key milestones in my awareness campaigns occurred when I featured as a guest blogger for one of the biggest cancer 'support' organisations in the world - Macmillan. The aim of the blog 'Sorry I'm not in service' was actually to highlight the consequences of cancer and its treatment (a Macmillan Campaign message); and to a certain extent to highlight the conflict that can often exist between work and cancer. However, it was also a fantastic opportunity for me to grab the interest of the general population with the word 'Neuroendocrine'.  The response was amazing and on twitter it was one of Macmillan's most retweeted posts over that period.  The Macmillan Facebook post was also very popular and still rising with over 500 likes and over 40 shares so far. There are some great comments on the post and the one which…
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Neuroendocrine Neoplasms – not as rare as you think

Neuroendocrine Neoplasms – not as rare as you think

Awareness, Living with Neuroendocrine Cancer, Technical NETs
Background Although initially considered rare tumours up until 10 years ago, the most recent data indicates the incidence of  Neuroendocrine Neoplasms (NENs) has increased exponentially over the last 4 decades and they are as common as Myeloma, Testicular Cancer, and Hodgkin's Lymphoma. In terms of prevalence, NENs represent the second most common gastrointestinal malignancy after colorectal cancer. Consequently, many experts are now claiming NENs are not rare (see below). A recent study published on 5 Dec 2018 reports that even if you isolate Small Intestine NETs in the USA population, the incidence rate is 9/100,000. Contrast this against the US incidence rate as at 2012 of 7/100,000 for all NETs.  The rare threshold in Europe is 5/100,000 and below.  They're not common (in incidence rate terms which means the numbers diagnosed each…
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Neuroendocrine – what’s that?

Neuroendocrine – what’s that?

Awareness, Patient Advocacy, Technical NETs
[caption id="attachment_3076" align="aligncenter" width="350"] You have what?[/caption] I once met some fellow cancer advocates and the conversation turned to what inspired us to ‘do what we do’. When it came to my turn as the only Neuroendocrine Cancer patient, I was already prepared to regurgitate my usual 'spiel'. As sometimes happens, a listener queried me with the words "Neuroendocrine - what's that?".  Another focused on 'Neuro' enquiring whether my nervous system or my brain had somehow become cancerous. Deja vu - here we go again! Two days later, I was speaking to one of my online friends who was having similar problems explaining this cancer to family and friends. Again 'Neuro' was proving difficult with the assumption that it’s somehow related to the brain. Technically not far from the truth but context…
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The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

Awareness, Diet and Nutrition, Patient Advocacy, Survivorship
  [caption id="attachment_3050" align="aligncenter" width="620"] “But it works… I read it in the news!”[/caption] You may remember my article entitled The trouble with the NET (Part 1) which was a lighthearted but still serious discussion about the dangers of self-treatment on the internet. Linked to that blog was a very popular article written by the scientists at Cancer Research UK debunking some cancer myths which seem to regularly patrol the NET and social media. Many well meaning people will send you articles they saw on the 'NET' about this and that treatment which claims to cure cancer.  They also post them on social media increasing the reach to thousands of people, some of whom are not in the right frame of mind to see the risks.  The vast majority of…
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Surgery for NETs – Chop Chop

Surgery for NETs – Chop Chop

Technical NETs, Treatment
[caption id="attachment_2707" align="aligncenter" width="550"] Liver tumour debulking[/caption] At the end of 2014, I was feeling pretty good celebrating 4 years since my first 'big' surgery in 2010. It prompted me to write an article Surgery - the gift that keeps on giving. In that particlar article, I really just wanted to say I was grateful for the early surgical treatment and as I was just about to spend another Christmas with my family, I was reminiscing what a wonderful gift it was at the time. Other than some detail of the surgery, I didn't get too technical, I just wanted to generate a thankful and festive mood. However, a recent private message from a subscriber prompted me to study the current benefits of surgery for Neuroendocrine Tumours (NETs) in more detail just to ensure my understanding…
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Colonoscopy Comedy

Colonoscopy Comedy

Humour, Living with Neuroendocrine Cancer
  [caption id="attachment_2643" align="aligncenter" width="500"] No more prep please![/caption] Last year I wrote a series of blogs on the 'coping' side of cancer, one of which was about still being able to have a laugh. This was my way of saying no matter how tough life is, you need to stay positive and maintain your sense of humour. When I think back to some of the treatments I've had, I sometimes have a little laugh even although I wasn't laughing at the time!  My favourite 'treatment laugh' is the 'suppository story' which occurred in hospital shortly after my first major surgery - it wasn't funny at the time but I smile when I think back to it. On a similar subject, I had a colonoscopy around 21 months prior to my actual NET Cancer…
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The Mother of all Surgeries

The Mother of all Surgeries

Treatment
[caption id="attachment_2338" align="aligncenter" width="500"] Surgery[/caption] My plan for this week's blog was to continue with a surgery theme using the story of a lady who had what was described as the "Mother of all Surgeries" after being late diagnosed with a very rare and advanced type of appendiceal cancer. With NETs, surgery is a topical subject as not everyone will be able to have it and some might not even need it. Check out my blog "to cut or not to cut". I suggested in a previous blog that 'Surgery is a gift that keeps on giving' and that is probably true for many cancer survivors. However, I then added that NETs were one of a small number of tumours for which surgical debulking can provide some survival advantage for those with metastatic and incurable disease. In my own case, I've…
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Neuroendocrine Cancer – not an exact Science

Neuroendocrine Cancer – not an exact Science

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Technical NETs
I've been interested in science since my school days and seem to remember it being separated into Biology, Physics and Chemistry for study and examination purposes. Biology wasn't on my radar and as I found Chemistry boring, I focused on Physics which seemed to be more 'modern' and exciting. Curiously, at the beginning of my Open University degree course some 25 years later, I found the Biology and Chemistry modules of my foundation year the most enjoyable part of the whole 6 year study.  Different teaching methods? different teachers?  Perhaps, but I suspect some maturity was involved plus a hunger for new knowledge. I seem to have caught the learning bug again since being diagnosed with Neuroendocrine Cancer (NET Cancer).  Like many other NET Cancer patients, I feel I need to know a lot more than the average cancer patient.  For me, this can be attributed to a number of…
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The Human Anatomy of Neuroendocrine Cancer

The Human Anatomy of Neuroendocrine Cancer

Awareness
OPINION.  Sometimes when I'm searching for cancer information, I'm presented with a 'pick-list' of types which mostly tend to be anatomy based.  I do find it annoying when I cannot find my own cancer on the list .....some respectable organisations are just not as up to date as they should be!  I can now totally understand why so many Neuroendocrine Tumour (NET) patients have become their own advocates and why they have to shout quite loud for recognition and understanding. One of the key facets of NETs is that it is not tied to a particular part of the human anatomy. Unlike (say) lung cancer, where the primary is in the lung, or breast cancer where the primary can be found in the breast, neuroendocrine tumours arise from a cell type which can be present more or less…
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My right-hand woman – Chris

My right-hand woman – Chris

Inspiration, Living with Neuroendocrine Cancer, Survivorship
There's been a lot in my blog about cancer, the cancer patient and the medical teams. However, we sometimes forget to mention the close family and friends who are also a piece of the cancer jigsaw. Without these people, it's possible the patient would potentially have a much poorer quality of life. I've had tremendous support from my immediate family and many of my friends. Some of my closest friends have almost been functioning as counsellors. I'm in a much better place than I was nearly 8 years ago but I have a lot of people to thank for some excellent progress.  My son & daughter's families have all been there for me and although my 4 grandsons don't quite understand the situation, their presence in my life is a…
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Diagnostic Challenges

Awareness, Living with Neuroendocrine Cancer, Treatment
I was checking my statistics this morning and found the most viewed post to date was published on the day Stephen Sutton passed away.   I didn't really want to jump onto the Stephen Sutton bandwagon but when I found on the day of his passing that it had taken 6 months to diagnose his bowel cancer, I knew this would be relevant to Neuroendocrine Cancer awareness, particularly important as it's one of the primary aims of my blog.  I'm thinking the top viewing score to date is not because it mentioned Stephen Sutton (sad as that event was) but because the issues he faced are well known to Neuroendocrine Cancer patients, many of whom are readers. In the past week, the newspapers have published several follow up articles on…
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Diagnosis – I’m no longer in control

Diagnosis – I’m no longer in control

Awareness, Survivorship
[caption id="attachment_10806" align="alignnone" width="777"] back in control?[/caption] 'Diagnosis'.  The dreaded moment when you're looking at an Oncologist and waiting to be given some news. I'd been to a routine annual Asthma clinic, referred to my GP, referred to a specialist, had a bunch of tests and now referred to an Oncologist. Rewind 2 months to May 2010......  I was happily working, getting stuff done, making things work. I had sufficient autonomy and freedom of manoeuvre.  I felt in control.  I'm happy as a pig in the proverbial!  My annual Asthma clinic comes along and it's an opportunity to work at home for the day....yahoo - no commuting! "Hi Ronny" - "Hi Liz". Blah Blah Blah. However, glad Liz was taking it seriously - I just wanted to get back to my laptop,…
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