Aretha Franklin – another Neuroendocrine Cancer Ambassador we NEVER had

say a little prayer

On 16th AUG 2018, Publicist Gwendolyn Quinn tells The Associated Press through a family statement that Franklin passed at her home in Detroit. The statement said “Franklin’s official cause of death was due to advanced pancreatic cancer of the neuroendocrine type, which was confirmed by Franklin’s oncologist, Dr. Philip Phillips of Karmanos Cancer Institute” in Detroit.

There are huge differences between Pancreatic Cancer and Neuroendocrine Cancer with a pancreatic primary – click here to read more. 

pancreatic vs neuroendocrine

tmz aretha

Clearly he meant Neuroendocrine Cancer with a pancreatic primary. However, in the fast moving social media world, this is what has gone out with the lazier writers and editors abbreviating it to just Pancreatic Cancer, perhaps because they didn’t see the relevance of the word Neuroendocrine or they didn’t want to confuse the issue.   All of these incorrect posts will now be embedded in the bowels of the internet and used for years to come by those writing about the Queen of Soul.  We in the Neuroendocrine community now have a much harder task because the press releases and her doctor did not articulate the type of disease correctly.  The same thing happened in 2011 with Steve Jobs.  It is considerably frustrating for the Neuroendocrine Cancer community.

However, a celebrity news outlet called TMZ has managed to obtain and publish a copy of her death certificate – you can read their article and see the death certificate by clicking here.  It clearly states “Pancreatic Neuroendocrine Cancer”. This is a contextually significant statement compared to the version of the original cause of death given by her physician and which went viral on the internet inferring that it was Pancreatic Cancer.  Annoyingly, even though they managed to obtain a copy of the certificate, their headline still said Pancreatic Cancer (read the TMZ article here) – please feel free to comment on their site or email the TMZ contact here – eric.page@kcrg.com

I commented as follows: Wrong headline. The certificate clearly states pancreatic “Neuroendocrine Cancer” – a totally different type of cancer, different symptoms, different prognostics, different treatment, different problems. Huge error. Will you be updating it?

They did not update it.

Interestingly the press have been saying Pancreatic Cancer since 2010 despite Aretha keeping her condition private,  However, she came out in 2011 by releasing a statement saying she didn’t understand where ‘Pancreatic Cancer’ came from.


I suspect she knew then it was Neuroendocrine Cancer, obviously from the fact that her doctor told her the surgery would give her another 15-20 years of life – that is certainly not a prognosis you would get with Pancreatic Cancer.

A summary of her cancer experience since 2010 can be found here – not too detailed but useful background.  She had major surgery on December 2nd 2010 (sounds like Whipples?). She wasn’t in good health at diagnosis, with media reports of years of chain smoking, alcoholism, obesity and crash-dieting. She was also diabetic for some year prior to cancer diagnosis.

In one of the better articles from Forbes, they actually stated some words which resonate with the Neuroendocrine Cancer community (see graphic below) – however, the remainder of the article then goes onto to talk about Pancreatic Cancer and not Neuroendocrine Cancer so we lost a massive awareness activity due to the fixation and assumptions with anatomy.

THE HUMAN ANATOMY PROBLEM WITH NEUROENDOCRINE CANCER STRIKES AGAIN.  Read about other errors with celebrities by clicking here

Neuroendocrine Cancer is not a type of another cancer PERIOD

A Neuroendocrine Tumour is NOT

Why do these mistakes happen? 

The Human Anatomy vs cancer type even confuses so called respectable and authoritative cancer organisations. Big hitter organisations such as the American Cancer Society and the US National Cancer Institute fail to list an A to Z list of cancer with Neuroendocrine Tumors / Neoplasms / Cancer / Carcinoma under the letter ‘N’. Instead you can find Gastrointestinal Carcinoid (a term now at least 8 years out of date) and pancreatic and lung NETs under Pancreatic Cancer and Lung Cancer respectively, I’m sure there are other issues.  I have contacted these organisations in the past and hinted there should be a standalone and grouped entry under ‘N’ but this has been totally ignored to date.  While many news outlets have reacted to the rather flimsy and misleading statement coming from the family quoting Aretha’s physician’s words “Pancreatic Cancer of the neuroendocrine type”, medical writers will also take to the internet to research and will find the two ‘big hitter’ websites above and bingo.  To a certain extent I see these issues more in USA than in any other country.

But in the meantime, please note that at least one big cancer organisation looking for changes to the way they display information on NETs as a result of Aretha (read it here) and some credit is due to Chris Nashville Lozina who many of you may know.  However, action speaks louder than words and I will be monitoring their website to see if they actually make the changes they used to jump on the Aretha bandwagon.   It should not be left to patients to do the running here – US NET patient advocate organisations must do more and must do it publicly.

The physician who quoted the cause of death which then went viral on the internet didn’t really do Neuroendocrine Cancer any favours – although we should credit him for leaving the word Neuroendocrine in there. That said, many lazy article writers and media have omitted the word not realising the significance of its meaning, not realising they were then quoting a totally different cancer.  Interestingly her death certificated stated PANCREATIC NEUROENDOCRINE CANCER – that would have been a much better press release.

Some patients are suggesting she has “Carcinoid” but not only is that way off beam, it’s using a term which has been abandoned and is not really good PR for us. In some ways, the ‘C word’ is causing these issues as many physicians make a demarcation line between ‘carcinoid’ and other types of NET associated with one part of the anatomy.

We must stop saying that Neuroendocrine Cancer with a pancreatic primary is a type of Pancreatic Cancer. I think everyone agrees they are different but the KEY POINT is saying or not saying they are a type of Pancreatic Cancer. Saying they are a type of Pancreatic Cancer is not only playing into the hands of Pancreatic Cancer organisations who want to claim the famous icons and their potential fundraising opportunities, but potentially a betrayal of Neuroendocrine Cancer awareness. Only my view though of course.

I will update this article as new information comes out n due course but in the meantime please share using “Neuroendocrine Cancer” as there is much misinformation being spread

RIP Aretha, Queen of Soul R.E.S.P.E.C.T.

ARETHA RESPECT

 

Thanks for reading

Ronny

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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Living with Cancer – if you’re reading this, you’re surviving

 

For the first few years after my diagnosis, I avoided using the word ‘survivor’ in relation to my incurable cancer. It just didn’t seem to sit right despite the fact I’m a ‘glass half full’ kind of guy.

However …….. I was studying the term ‘Survivorship’ and found it also applies to those living with incurable and long term cancer. This piece of research totally changed my thinking. The slides above were provided by National Cancer Survivors Day (which seems to have turned rather international) – well done NCSD.Org – you should check out the site and sign up for their newsletter

What is ‘Survivorship’?

The definition differs slightly between national cancer advocate organisations but it would appear it also means Living with, through, and beyond cancer which is a UK term. According to these definitions, cancer survivorship begins at diagnosis and includes people who continue to have treatment over the long-term, to either reduce the risk of recurrence or to manage chronic disease.  It follows that those with incurable Cancers such as my own (Neuroendocrine) should be included under the term ‘Survivorship’.

ncsd2018
Courtesy of NCSD.Org

 

Times are changing

I think it’s useful to look at overall statistics for survivorship to contextualise why the word ‘survivor’ might actually be more apt than it was 20 years ago.  For example, in the UK, more than one in three people (35%) of those people who die having had a cancer diagnosis will now die from other causes. This is up from one in five (21%) 20 years ago. By 2020 this will improve further to almost four in 10 people (38%).  This means the number of people who get cancer but die from another cause will have doubled over the past 20 years.   I’m seeing similar reports from USA too where, for example, the number of cancer survivors is predicted to rise by a third by 2026 (15 million to 20 million).  Almost half of the current survivors are aged 70+.  In another example, the US National Cancer Institute (NCI) is predicting:

‘Silver Tsunami’ of Cancer Survivors in the next quarter century (read here).

There is also a very recent article which confirms this thinking, let me quote a bit of it: The cancer death rate has dropped by 23 percent since 1991, with some even larger gains in types of cancer that used to be extremely lethal. This means there are more and more patients like Thornton who are neither dying from cancer nor defeating it entirely. Instead, they’re learning to live with it.  Full article here.

Of course, it must not be forgotten that many people will need support to maintain a decent quality of life and be supported with ongoing and long-term treatment.  These are both challenges global health systems need to face with rising cancer prevalence.  And both of these challenges will greatly affect my own type of cancer – Neuroendocrine. This is why I’m a very strong advocate for more focus on some of these support type issues and unmet needs, and the resources to deliver them.

So does that mean I’m a Survivor?  

My research indicates this can be a very individual thing.  I guess ‘survivor’ does not appeal to all people who simply have a ‘history of cancer’; and most likely for different reasons. For those with incurable or long-term cancers, some people might not think of themselves as a survivor, but more as someone who is “living with cancer.”  Some may feel like they’re living but not surviving. I get that and it potentially resonates with my reluctance to use the ‘S’ word for a short period after my diagnosis. Thinking this topic through has made me compare where I was at diagnosis and where I am now. Also, I’ve considered what I’ve been able to do and what I have plans to do, despite my condition. I’ve done so much, been to so many places since I was diagnosed, and got plans to do much more, I must be surviving!  Perhaps the words “I got this” was my subconscious thought in the picture I’ve used below?

I got this!

And this picture which always gets a tremendous response every time I post it:

Here’s a great quote I found in relation to the term ‘survivor’:

“You may not like the word, or you may feel that it does not apply to you, but the word “survivor” helps many people think about embracing their lives beyond their illness”.

You may sometimes feel like you’re not surviving but if you’re reading this then you most definitely must be?

Neuroendocrine Cancer – Incurable vs. Terminal

Incurable is not untreatable

OPINION. When I was being officially told I had an advanced and incurable cancer, I did what most people seem to do on films/TV ….. I asked “how long do I have“.  The Oncologist said ” … 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 Oncologists!

I continue to see quite a few posts and articles about death and dying and I noticed some patients were using the word ‘terminal‘ to describe Neuroendocrine Cancer, despite in some cases, having been diagnosed some years ago. This label is not just confined to use within Facebook forums, I’ve also seen this on wider social media including twitter, blogs and newspaper items. For some, this appears to be the prognosis given to them by their doctors. I find this surprising. However, I’m much less surprised to see many comments on forums from people who had been told the worst by their doctors but were still alive and kicking WAY beyond those worst case prognostic statements.

Definitions are important so what does ‘terminal cancer’ actually mean? 

I’m conscious there are legal ramifications with the definitions (wills, life insurance, disability etc) and that these may differ on an international/federal basis.  I therefore intentionally confined my searching to a couple of ‘big hitter’ and ‘authoritative’ sites:

Cancer Research UK defines terminal as “When cancer is described as terminal it means that it cannot be cured and is likely to cause death within a limited period of time. The amount of time is difficult to predict but it could be weeks to several months”.

The American Cancer Society defines terminal as “an irreversible condition (it cannot be cured) that in the near future will result in death or a state of permanent unconsciousness from which you are unlikely to recover. In most states, a terminal illness is legally defined as one in which the patient will die shortly whether or not medical treatment is given.”

Can terminal as defined above be applied to Neuroendocrine Cancer? 

I’m sure it can, e.g. with very advanced and very aggressive disease and for any grade when taking into account the condition of the patient and other factors (secondary illnesses/comorbidities, refusal of treatment etc). Clearly, that is a terrible situation.  I’m also conscious that some people do eventually die because of this disease or its consequences and that is also terrible.

How long is a piece of string?

I think with most Neuroendocrine Cancer patients, “how long do I have” can be a tough question to answer. Thinking back to my own situation, although it was an obvious question to ask my Oncologist, I can see it might have caught him unawares.  I suspect he was erring on the side of caution as I don’t believe he had formulated my treatment plan ….. i.e. my case had not yet been looked at by a Multi-Disciplinary Team (MDT), a bit like a ‘Tumor Board’.  I had already been confirmed Grade 2 (via liver biopsy) and my CT scans were indicating widespread disease.  I was yet to have an Octreotide scan and the conventional biochemical markers (CgA and 5HIAA).  I suspect, faced with my question, he went for the worst case, based on the statistics he had access to at the time. What I now know is that, in the year of my diagnosis, the median survival was 33 months in patients with advanced Grade 1/Grade 2 NETs with distant metastasis.  These statistics are certainly better today but my Oncologist was probably on the right track.  However, at no time did he use the word ‘terminal’.

The Cancer story is changing

What I also found during my research is that as more and more people in the UK are now living with cancer (all cancer) rather than dying from it, there is a new class of patients emerging – Macmillan UK call this “treatable but not curable” and I believe this is very relevant to Neuroendocrine Cancer.  I touched on this in an awareness blog entitled “Living with Neuroendocrine Cancer – it takes guts“.  You will find some data in this blog about a major increase in the amount of people with cancer who eventually die of something else (…… basically it has doubled). For many, Cancer is no longer a death sentence.  I do accept that it can be difficult to live with certain cancers and this is also covered in my “it takes guts” blog linked above.

Survivorship and Hope

You can find numerous examples of long-term survivors of advanced Neuroendocrine Tumours on the ‘airwaves’, many with a relatively good quality of life (QoL).  I don’t normally pay much attention to prognostic data, I take my lead from the huge number of patients living a long time with Neuroendocrine Cancer.  However, I was particularly interested to read a set of USA statistics from NOLA (Boudreaux, Woltering et al) which said “Our survival of stage IV midgut NET patients that we performed surgical debulking on was published in the Journal of the American College of Surgeons in 2014. It showed our 5, 10 and 20-year survival rates were 87%, 77% & 41% respectively. It’s also worth noting the comparison with the 2004 SEER database analysis which listed the 5 & 10 year SEER survival at 54% and 30% respectively”.  Clearly, the NOLA figures are guidelines (and only for midgut) but they do seem to reflect my previous statement about seeking out positives rather than dwelling on the negatives.  The SEER 2012 figures are much better than the 2004 versions stating “Survival for all NETs has improved over time, especially for distant-stage gastrointestinal NETs and pancreatic NETs in particular, reflecting improvement in therapies.

Exciting times ahead

On the subject of therapy improvement, there has been a plethora of new treatments coming online and more entering and progressing through the approvals pipeline.  Check out my article entitled Exciting Times Ahead Also listen to a NET Expert along the same lines.  PRRT is making a real difference.

Summary

Following my diagnosis in 2010, I went on to receive really good treatment and it continues to this day with Lanreotide backed up by a rigorous surveillance regime (and this is backed up by my own advocacy!).  However, I have totally accepted the fact that I have metastatic Neuroendocrine Cancer and that it cannot be cured.  By the way, I intentionally used ‘metastatic‘ rather than Stage IV.  Mention of Stage IV can set off alarm bells and send the wrong message to the recipient. I don’t believe Stage IV has the same ‘red flag’ meaning for well-differentiated NETs as it does with more aggressive cancers of the same stage. Given what I know now, I would certainly challenge any doctor who told me I had a ‘terminal disease’ and at the same time told me I had a slow-growing well differentiated Neuroendocrine Cancer.

I now live with this disease (….and it’s consequences) and do not feel like I’m dying of it.  Moreover, I most certainly do not see myself as a ‘terminal’ cancer patient, particularly as I’ve now been living with it since 2010. 

I like to focus on how I can live better with it.

Whilst we’re on this subject, please note Palliative Care is not just end of life / hospice care.  That’s another misunderstanding bordering on mythical status. Read more here.

being_there_front
Graphic courtesy of Ellie McDowell

 

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

wego blog 2018 winner

patients included

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