In the past 24 months, I’ve read dozens of articles on the subject of cancer metaphors and in particular their use in describing cancer experiences with the words ‘fight’, ‘battle’ and other ‘military’ sounding terms. The authors say that perhaps this is not the best language to use. One author used the term ‘violence’ to describe these type of metaphors. A ridiculous misrepresentation of the metaphor in my opinion.
Let me put my cards right on the table as I would hate to twist the meaning of words or the inference of any metaphors I might use. I don’t like Cancer – it attacked me, it attacked my family, it attacked others I know, it has killed people I know……. it has killed millions of people and changed many lives. I’m ‘fighting’ Cancer. I’m in a ‘battle’ with Cancer.
But I don’t mean all that in any ‘violent’ way………. Dear trendy writers, please stop misinterpreting what language people use for your own trendy populist purposes.
One of the arguments used by these ‘trendy’ writers and newspaper authors against the use of what they perceive to be ‘military’ or ‘violence’ metaphors, is that people die of Cancer and therefore they are seen to have ‘lost’ their battle or fight. Clearly, it’s sad when anyone dies of any illness.
We all die at some point, ‘life’ eventually kills us. Yet, few people are reported to have lost their fight with life. So why focus this “fight” debate on cancer?
I have access to ‘reinforcements’ and ‘allies’; and their ‘weapons’ in my battle with cancer. There are many options including surgical strikes with invasive and minimally invasive forays. The use of WMTD (weapons of mass tumour destruction) is authorised if applicable, i. e. I have chemical and nuclear options. Using these ‘weapons’ and deploying them both strategically and tactically, I can put up the best fight possible and by adjusting the disposition of my ‘forces’ when required, I can delay the advance of the ‘enemy’, protect my flanks and force it to change its course or retreat.
Not happy with infiltrating your body, Cancer also wants to take advantage of your fragile state by playing with your mind. It does this by creating the illusion of an uncertain future, makes you worry about your family and makes your family and friends worry about you. I’ve therefore also deployed a psychological warfare capability to counter this threat. It’s a weapon known as ‘a positive mindset’.
If it finally gets me, I know I’ll have tried my best and I will go down fighting hoping to be mentioned in despatches. I certainly do not see this as a defeat and anyone who knows me will not think that either. I know that others will carry on the ‘fight’ in my absence until Cancer is defeated (and it will be defeated).
Just my approach, please don’t take offence as none is intended.
I believe people quite naturally ‘fight’ in their own way and there are even parts of the human anatomy whose job it is to fight illness and infection without us even realising they are doing it. So whether we like it or not, our bodies are fighting illnesses and we cannot stop them doing it. It’s natural.
In fact, to ‘fight’ has many contexts and not just the contrived ones used to argue against use of these metaphors. If you check the Oxford/Cambridge dictionaries (the Supreme Headquarters of the English language), you will see that ‘fight’ has numerous meanings including “to struggle to overcome, eliminate or prevent” or “to strive to achieve or do something”. What that means is that some people will use the word fight to describe the ability to get out of bed in the morning, to walk to the local shops, to go to a restaurant for a meal. Fighting to see a doctor who understands their cancer, fighting for access to the best treatment, fighting when you think someone isn’t listening. I fight cancer by writing a blog. The context is really important.
As for me, I have no intention of ceasing the use of words such as ‘fight’ and ‘battle’ in my war of words with Cancer. It’s my way of coping.
The build up to NET Cancer Day has begun and I can hear hoofbeats becoming louder every day. Is it a horse, is it a zebra etc etc. However, is this aged equine medical adage still applicable as an awareness tool for Neuroendocrine Cancer or should we be looking for something which is more impactful, up to date, more compelling, more likely be taken seriously and attract new audiences?
For those unaware, the term ‘Zebra’ is a North American medical slang for arriving at an ‘exotic’ medical diagnosis when a more commonplace explanation is more likely. The original context of the term was to correctly indicate that the most obvious diagnosis of symptoms is normally correct – i.e. hoofbeats is almost always the sound of a horse.
“When you hear hoofbeats, think zebra” is clearly not practical and pretty dangerous to those who have the obvious diagnoses (i.e. the vast majority). It’s also likely to turn out to be a very expensive way to do business as common things are common (in fact Neuroendocrine Cancer is now much more common that it was 20 years ago…..).
I’m not suggesting those who are destined to be diagnosed with ‘exotic’ diseases should be ignored for the ‘greater good’, I’m saying that hoofbeats are in actual fact normally the sound of horses in both equine and medical terms – thus why the saying was invented in the first place. By the way, Neuroendocrine Cancer has the fastest rising incidence of all cancers on the planet so it’s far from exotic. What I’m also saying is that perhaps we should stop ‘beating up’ and potentially insulting medical staff using a maladjusted version of the hoofbeat analogy in our PR. I’m afraid the use of cartoon zebras looking sanctimoniously down on cartoon doctors is perhaps not the way to win friends and influence the people we need to work with in helping diagnose quicker.
Moreover, we really need to stop dehumanising patients. I think most NET advocate organisations tend to agree with this view as they mostly do not have zebra icons in their own branding i.e. they get it, even though they might not admit it for fear of upsetting the zebra HQ. By the way, if you hear the sound of hoofbeats in Kenya, it’s likely to be a zebra, so should the Kenyan NET organisation ask their doctors to look for horses? Slightly flippant but necessary to make the point that our disease is international and yet certain organisations appear to be aloof by using it as an international slogan when it is just not relevant internationally.
The use of this skewed version of the phrase might be a great ‘rallying cry’ within the NET Cancer community and for some a ‘populist’ Facebook ‘like farming’ scheme but sharing quite ridiculous pictures of animals that will only be shared by patients is NOT real awareness. In fact, and in my opinion, the ancient, outdated and misleading zebra term is fundamentally flawed in a number of ways.
1. Context. Contextually, the zebra represents a term for a diagnosis (i.e. a disease) but the patients are not their diagnosis, they are not their disease – they are humans.
So when someone says “I am a zebra”, they are in effect saying “I am a disease”. If they say “Dear Zebras”, they are saying “Dear Diseases”. Or the cringeworthy “My fellow diseases”
2. Scope. The term is heavily associated with diagnostics i.e. it has a very narrow scope. It does not sit nicely with the increasingly important long-term maintenance of patients – crucial when you consider this is mostly a slow-growing and therefore highly prevalent disease.
3. Confusion. The term ‘Zebra’ is not exclusively used by the Neuroendocrine Cancer community, it can be, and is used by, other conditions which quite often leads to confusion.
4. Relevance. The term is inextricably linked to rare diseases and as we all now know, NETs are no longer rare. Anyone who says that the group of diseases called Neuroendocrine Tumors (or Neuroendocrine Neoplasms to use the correct scientific term) is rare, is clearly out of touch with the latest incidence and prevalence data (….or chooses to ignore for their own agenda).
I’ve made no secret of the fact that I believe we need a paradigm shift in the way we (the Neuroendocrine Cancer community) spread external awareness of this less common type of cancer. I think everyone agrees we need a lot more public awareness of Neuroendocrine Cancer and also that we need some high-profile ‘ambassadors’ (preferably themselves patients) in order to help promote our cause. Yes, money is useful too but in a ‘chicken and egg’ sense, we need a compelling case to attract the funds. We need new audiences outside the ‘bubble’ I think we appear to be trapped inside. The zebra posse sharing zebra pictures between each other is not efficient awareness.
Here’s my beef. If you speak to any primary or secondary care doctor, you’ll find they are very well aware of the conundrum when faced with a patient who presents with vague and odd symptoms and negative tests. Almost all will say they don’t need reminding that it might be an oddity, and that it is difficult to diagnose. They will definitely accept that some conditions are more difficult to diagnose than others and if you think about the fact that there are over 200 different types of cancer and literally thousands of conditions out there, you can see they have a really difficult job.
Let’s be realistic, very few people are going to be diagnosed with Neuroendocrine Cancer at their very first visit to a doctor. The same could be said for many cancers and many other illnesses. Many conditions are difficult to diagnose and many are misdiagnosed for other things – yes this happens with NETs too. NETs are not as special in these areas as some people make out. Whilst we’re on that subject, please don’t quote patient surveys to me, they are also fundamentally flawed both in terms of numbers of participants and the source of the participants. It amazes me that the NET community uses this flawed (and outdated) information annually including alongside animal antics which degrades what limited value they already have.
I also know that many people (including medical staff and patients) are both confused and incredulous at the NET communities failure to ditch this out of date and single issue awareness message. Some avoid the use of these animal gimmicks and then lapse their real beliefs on 10 Nov just to appear to fit in. However, that’s rather transparent and so people see right through it, like me they want these progressive organisations to stick to their principles. They tell me they don’t like the zebra model but then say a different thing to Zebra HQ.
To quote one famous NET Specialist “….zebras …. we’re beyond that now”
We need our awareness to cover the whole spectrum of being diagnosed and then living with Neuroendocrine Cancer. We share so many issues with many cancer patients in the challenges of living with a long-term condition. This is not special, not unique, and it certainly isn’t a rare occurrence. Key facts continually missed and continually ignored by the ‘zebra posse’ (perhaps intentionally), is that this disease of ours is no longer rare and diagnosis is improving, both of which are now well documented. The ‘zebra posse’ will ensure that quite ridiculous pictures of zebras, zebra patterned clothing and jewelry all take precedence over genuine patient concerns on Facebook forums, i.e. it is hindering proper support for NET patients – NET patients are suffering because of this infatuation.
As one well known NET patient said, “unfortunately the community has become too cute with the icon”.
He’s right, it is really holding us back. It’s a PR disaster.
I’m sure that earlier access to diagnostic testing (scanning in particular) will lead to earlier diagnosis, in fact access to better scans is cited in the lasts SEER NET report as a factor resulting in increased incidence rates. That’s a resource/process issue rather than just a training/knowledge one. We need to work with doctors, not shoot them down for not knowing every minute fact about medicine. NET Cancer is much more likely to be diagnosed at secondary care and we should be equally or even more focused at that level.
If your Doctors don’t suspect something, they won’t detect anything is a more practical and realistic phrase than the impossible and impractical one in current use by our community. Additionally, to suggest that NET Cancer always presents with years of vague symptoms and requires several visits to a physician before a proper diagnosis is simply not true and is a myth. To suggest that an international patient survey of 5000 accurately represents the experience of hundreds of thousands of NET patients out there is way off beam, particularly when the source of the survey patient cohort is taken from those affected most, those with the biggest issues. Big Facebook forums do not represent the average experience of a NET patient.
Finally, I think the patient has a big part to play in diagnosis. Thanks to the internet and the stellar rise of social media, many patients are now much more savvy and are presenting to doctors and specialists with lists of their symptoms and a diary. Some will even have already compiled a list of questions to ask and have their own suggestions about what might be wrong with them. I see undiagnosed patients every day on my social media very clued up, thanks the rise of the online world, and I guarantee you they are (indirectly) educating their first line medical staff when they reel off NET facts. Add in better diagnostic testing and greater access to it (including via primary care), then I think there are positive times ahead for the earlier diagnosis of Neuroendocrine Cancer. You might say it’s a bit of a dark horse.
To summarise ….. The first word of this post is “Opinion” but it is a pretty strong opinion as you would have gathered from the flow of the text. Everyone does indeed have a story and you only tend to hear the bad stories on NET patient forums. Additionally, newspapers love a bad story – they never print “cancer patient quickly diagnosed and treated for cancer – the end”. It’s a bit like in NET world, where the worst cases will be the majority constituents of any forum, because they are looking for help and support. The biggest US forum has around 4000 people but there are over 200,000 people living with NETs in USA (i.e. not rare). There’s a similar quota in UK. I really believe the bad experiences you regularly see on NET forums are the extreme cases (the minority). Unfortunately, most NET patient surveys are taken from these patients so the statistics are totally skewed, presenting a false picture of reality. That’s not to say we ignore this section of the community but we owe them a much better campaigning tool than the now outdated, unfashionable and very inward looking animal analogy.
Let’s move into the 21st century and get on with that.
Thanks for reading
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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 second Neuroendocrine Cancer treatment to be withdrawn this year, after the earlier decision on Everolimus (Afinitor) in April . In fact, the recent cuts to the CDF were described in the media as a “massacre” as the list was reduced by two-thirds. You can see the current CDF list by clicking here.
The timing of these cuts is extraordinary and when you look at the output from recent trial reports presented at the Europetwo-thirdsCongress (ECC) for both Neuroendocrine Cancer related drugs recently cut:
The RADIANT-4 trial said that Everolimus had a significant effect in non-functional NETs which are very difficult to treat. This is particularly important for Lung NETs as no treatment currently exists. The RADIANT-2 trial had already proven the efficacy of the drug for advanced carcinoid (in conjunction with Octreotide) and the RADIANT-3 trial proved good data for treatment with advanced functional pNETs. Read the report here.
PRRT – 177Lu-DOTATATE
The ECC also reported a significant finding from the NETTER-1 trial. Treatment with the novel peptide receptor radionuclide therapy (PRRT) Lutathera significantly increased progression-free survival (PFS) over Octreotide LAR (Sandostatin) in patients with advanced midgut NETs. It shows a PFS that has never been shown before in this type of cancer adding that this was significant because these patients have a real unmet medical need.
Lutathera is a 177Lu-DOTATATE PRRT that targets somatostatin receptors, which are overexpressed in about 80% of NETs, to deliver cytotoxic radiation directly to the tumor – See more by clicking here.
To fully understand the background to the problem, you need to understand both PRRT and the Cancer Drugs Fund and a quick primer on both follows.
Peptide receptor radionuclide therapy (PRRT) is a molecular therapy (also called radioisotope therapy) used to treat a specific type of cancer called neuroendocrine carcinoma or NETs (neuroendocrine tumors). PRRT is also currently being investigated as a treatment for prostate and pancreatic tumors.
In PRRT, a cell-targeting protein (or peptide) called octreotide is combined with a small amount of radioactive material, or radionuclide, creating a special type of radiopharmaceutical called a radiopeptide. When injected into the patient’s bloodstream, this radiopeptide travels to and binds to neuroendocrine tumor cells, delivering a high dose of radiation to the cancer.
The cells in most neuroendocrine tumors have an abundance (called an overexpression) of a specific type of surface receptor—a protein that extends from the cell’s surface—that binds to a hormone in the body called somatostatin. Octreotide is a laboratory-made version of this hormone that binds to somatostatin receptors on neuroendocrine tumors. In PRRT, octreotide is combined with a therapeutic dose of the radionuclides. Yttrium 90 (Y-90) and Lutetium 177 (Lu-177) are the most commonly used radionuclides.
What conditions are treated with PRRT?
PRRT may be used to treat NETs, including carcinoids, islet cell carcinoma of the pancreas, small cell carcinoma of the lung, pheochromocytoma (a rare tumor that forms in the adrenal glands), gastro-enteropancreatic (stomach, intestines and pancreas) neuroendocrine tumors, and rare thyroid cancers that are unresponsive to treatment with radioiodine.
PRRT is an option for patients: • who have advanced and/or progressive neuroendocrine tumours • who are not candidates for surgery • whose symptoms do not respond to other medical therapies.
The main goals of PRRT are to provide symptom relief, to stop or slow tumor progression and to improve overall survival.
These video’s on Nuclear Medicine are by Professor Val Lewington – the UK’s most experienced person on PRRT. I was at this presentation and she is absolutely amazing. It’s slightly dated but still very current. This presentation also covers Octreotide and Gallium 68 scans under the heading of Nuclear Medicine – if you are still unsure about PRRT or Nuclear Medicine in general, these videos are definitely worth a watch.
This is also a great source of information maintained by NET Patients in the USA. Click here
What was the Cancer Drugs Fund?
The Cancer Drugs Fund was money the UK Government has set aside to pay for cancer drugs that haven’t been approved by the National Institute for Health and Care Excellence (NICE) and aren’t available within the NHS in England. This may be because the drugs haven’t been looked at yet. Or it may be because NICE have said that they don’t work well enough or are not cost-effective. This was introduced as a ‘political statement’ by the then Conservative/Liberal Democrat coalition government in 2010/11. The aim of the fund is to make it easier for people to get as much treatment as possible.
The Cancer Drugs Fund was for people who live in England. The governments of Scotland, Wales and Northern Ireland decide on how they spend money on health and so far haven’t decided to have a similar programme.
Worth noting that on 1 April 2013, NHS England took on responsibility for the operational management of the Cancer Drugs Fund (CDF). The NHS spends approximately £1.3 billion annually on the provision of cancer drugs within routine commissioning. The CDF was established as an additional funding source to this.
There was a national list of drugs available through the fund – you may have heard this called the priority list. If you met the conditions for a drug that was on the list, you should have been able to have it on the NHS if you live in England. The Fund would also have considered applications on behalf of individual patients for other drugs that are not on the list. However, under the new system, Individual funding requests (IFRs) relating to cancer drugs will no longer be considered via the CDF process. All IFRs relating to cancer drugs will now be considered using NHS England’s single, national IFR system, which was updated in January 2016.
The new system came info force on 29 July 2016 and you can read more if you click this link
Although the decision is shocking to most, it was not totally unexpected as the Government and NHS have been hinting for sometime that the costs of the fund need to be reined in. In any case if was only ever a temporary arrangement until a another model could be put into place. There is a political element as the fund was set up by David Cameron with healthcare experts suggesting that it made no sense as a response to rising drug prices. Moreover, by topping up the fund, the same experts claimed this was making the manufacturers the real beneficiaries of the fund as they have been able to sell their drugs to the NHS at prices that are unaffordable (and therefore unsustainable) for the NHS.
UK NET patients who have advanced and/or progressive neuroendocrine tumours which cannot be removed by surgery and whose symptoms do not respond to other medical therapies, still need help.
Ironically, the UK seems to be intent on cutting provision of the treatment (at least for NHS patients) as the US is trying very hard to formally introduce it. This is a disgraceful situation and advanced Neuroendocrine Cancer patients and those who may need this treatment in the future are being terribly let down.
I will keep this blog ‘live’ in order to add information as things progress.
Every now and then I see a positive story during my travels around the internet. When I saw this one from K**** in Pennsylvania, I had to share. If you’re feeling a little bit down and need cheering up, dig out this blog and take a read 🙂
“I began my Carcinoid journey about 7 years ago, newly married to a wonderful man and his daughter at the age of 43. I was also newly retired (from CPA and also Large Animal/Equine Surgical Veterinary Assistant) and was looking forward to a nice, peaceful, fun, loooong life.
But, things get in the way and can get bumpy – cancer, being one of them (and a now, 16yo hormonal female teenager). I took my diagnosis, thought about it for awhile, hung out on the sofa…ate a few bonbons and then, pulled my head out of my a**. I went back to work as a Patient Care Assistant at our local hospital (feeling the need to go “medical career” again), trying to figure out what to do next – needing to get my outrageous health insurance premium off my husband’s back. I was pissed, I had to go back to work, I had CANCER, for God’s sake – I should be looking into disability or anything that will bear this burden – but, I was well enough to bear it myself.
Continued to pull my head out of my a** and decided to pursue a career as a Registered Nurse, knowing that I, at the ripe age of (now) 53, still had a whole boatload of stuff to offer. So, 4 years ago, I strapped my pump (yes, I’m a “pumper”) and my ‘kahoonas’ on and I went back to school full-time, working part-time, raised my hormonal daughter, rode my (new) gloriously wonderful old Off the Track, Thoroughbred “Gryphon”, got my Harleys back out and got my game on.
Yesterday, I sat for the Pennsylvania State Nursing Board test and today….I found out that I PASSED! I am now officially, K**** ******** RN
If you’ve got the health (screw that diagnosis) and you’ve got the need to make a change – MAKE IT and make it count! As of 15 minutes ago…I applied for an Oncology Nurse position 🙂 “