From dying to living, to hell and back


I once wrote a post about patient stories, in particular the ones I receive in my private messages.  The headline was “The shock effect never wears off“.  But none have been more shocking than the one I received early in 2019.  (edit: After posting this article, I heard of a few similar cases).

This is a story about someone who is a private person but felt the need to reach out to me about their diagnostic experience. This person wanted to talk about it, but in private and I was happy to listen.  I was so moved by this story, I persuaded this person to let me tell it here whilst retaining their anonymity.  Hence referral going forward as ‘Patient E’. I just felt that someone somewhere might learn something very important.

The Story of ‘Patient E’

In December 2018, Patient E was told ‘Stage 4 Pancreatic Cancer’ and had 10 months to live. Chemo was to be attempted in January in an effort to extend life but in the meantime was told to spend Christmas for the last time with the family, a spouse and 3 young children.   On 2nd January, Patient E was then told (with apologies) it was actually a ‘Neuroendocrine Tumour with a pancreatic primary’.  The only good thing about this story so far, is that they told the children nothing over Christmas. “Why worry happy little people” was the bit of the story which brought out my tears.

Initially I was quite angry this could happen to anyone but I was then calmed by Patient E who now had fresh hope and optimism, perhaps realising that there were possibilities for many more years with the family.

The Story of ‘Patient F’

In March of 2017 I was having bad indigestion and since I already had two cardiac stents went to a local hospital to make sure I wasn’t having cardiac issues. They found a mass on the pancreas and metastasis to the liver. I saw a surgeon a couple of days later and he told me it was inoperable, adding that I should pretty much get my affairs in order. A biopsy was then carried out confirming it was neuroendocrine and we were thrilled. I then received a call a couple of days later, saying they had it wrong, it was not neuroendocrine and they wanted to start chemo ASAP! I then received a further call a few days later, saying they were not sure and needed to do more tests. We then went a different hospital where two different surgeons said that it was inoperable. One oncologist said she did not know; and another thought it might be a combination of the two. At this point. they sent my slides to a NET specialist hospital for their opinion, coincidentally we had already scheduled an appointment there. When we walked into this appointment, the NET Specialist greeted us with a big smile and hug, saying that that both she and the surgeon had reviewed my slides; and that it was definitely neuroendocrine – they could operate. Two weeks later the surgeon removed the mass from my pancreas and my spleen. He said that it was probably there for years and looked like it was ready to burst. I was unbelievably lucky.

So why do these things happen?  Apart from the serious communications lapse by the hospitals, this is another example of the problems we as a community face with the anatomical approach many doctors take with cancer, with some even describing a pancreatic Neuroendocrine Tumour as a type of Pancreatic Cancer (this happens with other parts of the anatomy too).

Patients E and F are not alone, I once wrote a story about rock star Wilko Johnson (of Dr Feelgood fame) who was given a very similar prognosis.  However, Wilko was in the later stages of his life and decided instead of undergoing gruelling chemotherapy, he would forego any treatment and tour with his band in the final 12 months of his life and …….. make an album with Roger Daltrey of The Who. It wasn’t until someone enquired why he wasn’t dead after 12 months, that they re-checked and changed the diagnosis to Neuroendocrine Tumour with a pancreatic primary.  Read the whole story here.

I wonder how many other times this has happened.

Neuroendocrine Tumours with a pancreatic primary (pNET) is a totally different cancer to Pancreatic Cancer.  With Pancreatic Cancer, most people die, quite the opposite with pNETs where most people live.  Read more about the main differences here.

I’m grateful to Patients E and F for contacting me to let me know that my blog and my other support sites have been helpful in the transition from despair to hope since finding out the correct diagnosis. I do hope Patients E and F will keep me updated.

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

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

patients included
This is a Patients Included Site

PLEASE CONSIDER SHARING THIS POST – YOU MAY SAVE SOMEONE’S LIFE

 

How to Talk to a Cancer Patient Without Being a Complete Twit

I enjoyed reading “8 rules on how to talk to a cancer patient” because I think much of it is written with ‘tongue in cheek’.  Great title!

In UK we might even spell the word ‘twit’ slightly differently (UK people will get it!). Some of the rules are directed at doctors and I’m sure some doctors will laugh (if you’re a doctor and you didn’t laugh, sorry). I think one or two are a bit harsh and could potentially backfire and at least one I partly disagree with.  Personally I try to balance my reactions to not come over as a ‘pity party’ and something which is genuinely offensive or upsetting to me as a cancer patient.  I appreciate understanding and empathy, perhaps sympathy, but I certainly don’t want pity.

I’ve added rule number 9 which is a true story I picked up in my own community which I found absolutely unacceptable and I certainly did not laugh.  Thanks to ‘Patient A’ for the quote.

Read the 8 rules here:

https://www.mcsweeneys.net/articles/how-to-talk-to-a-cancer-patient-without-being-a-complete-twit

You may also enjoy this article which contains 16 ‘red flags’ that might mean it’s time to find a new doctor.  Easier in some countries than others and I suspect we have all encountered at least one of them.  I don’t think we should be changing doctors too often and we shouldn’t be changing just because of one of these ‘red flags’ (although the example above is pretty offensive).

16 ‘Red Flags’ That Might Mean It’s Time to Find a New Doctor

Another good one is an actor based video which discusses about the things people sometimes say (often clumsily) to patients that often don’t hit the right chord – check out my article “Things not to say to a someone with cancer“.

And of course we all look so well as Neuroendocrine Cancer patients – but you should see our insides.
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!

I wish I had another cancer

I wish I had breast cancer

I’m thankful to Pancreatic Cancer Action for featuring this article here.

pancan action logo

I’ve seen the term ‘Cancer Olympics’ many times on my social media travels, it’s been used in several contexts. For example, my friend Dr Robin McGee uses it to describe her ordeal with late stage bowel cancer and judging by the cover of her book, the analogy is the hurdles she had to jump to get the right treatment (many of you will relate to that).

Another example I see is the race to claim a cancer is somehow ‘worse’ than other cancers, i.e. ‘my cancer is far worse than yours’.  Ironically, although some cancers are almost certainly worse than others (for example in prognostic terms), it seems like a race to the bottom as patients fight for the ‘top’ spot.  It works both ways as some people perceive they have had or are having a better cancer experience than others, and that can often lead to a sense of guilt, i.e. ‘your cancer is much worse than mine, I shouldn’t really complain too much’.

It can be normal to experience these emotions, and with such wide and varying cancer experiences, different personal circumstances, even (say) the worst stages and grades cannot always be used to justify the ‘gold medal’ position in this ironic version of cancer Olympics. Take my Neuroendocrine Cancer for example, I have the highest stage but an intermediate grade, so my sub type is not particularly aggressive in comparison with other cancers or even other sub-types of my own cancer. However,in many ways it’s a deceiving and silent disease and very often people are not diagnosed until a late stage where the disease becomes incurable. Prognostics for many sub-types are good but living with the disease has many consequences.  This sounds like a bad deal and for some it can be. But don’t tell me I have a ‘good’ cancer.  Neuroendocrine Cancer does have aggressive types with significantly different prognostic outcomes than the more common and less aggressive variants.

So let’s turn my personal cancer Olympics analogy round the other way.  Let’s say you have a very aggressive cancer with terrible and frightening prognostic statistics.  I would certainly not criticise anyone or accuse them of deliberately playing a cancer Olympics ‘game’ for suggesting they wished they had another cancer in this scenario.

I want to focus an example on Pancreatic Cancer, an awful cancer with awful prognostic outcomes. Using UK statistics, less than 7% of patients survive 5 years, it has the worst survival rate of all 22 common cancers. The headline and key awareness and campaigning message is that these prognostics have not changed much in 40 years.  There are similar statistics in many countries. Pancreatic Cancer organisations worldwide are therefore campaigning robustly for more resources and funding to tackle and improve these statistics through more research and clinical trials.  They are also doing what they can with their own prevention and early diagnosis campaigns with limited funding.  With this particular disease, given the survival statistics, awareness is vital and it can save lives, one of the reasons I regularly publish Pancreatic Cancer symptoms.

One of the most compelling, bold and disruptive (in the context of shaking things up) campaigns I’ve seen, is the ‘I wish I had another cancer’ campaign from a UK-based Pancreatic Cancer organisation. It certainly caused a storm, making it to billboards in many towns, London underground adverts, several national newspapers and  appearances on national TV.  One broadcaster named it the ‘Envy’ campaign.

i wish i had testicular cancer
RIP Andy Luck

Many supporters of the ‘other’ named cancers reacted as you would expect, with criticism and it came from many parts of the world. In UK, there were many complaints made but the UK Advertising Standards Authority rejected these and refused to ban the adverts.  Read some of the fallout by clicking here.  The UK-based Pancreatic Cancer organisation later issued a statement saying ‘no cancer advert that saves a single life can be accused of going too far‘. Two of the three patients in the controversial adverts have since died, in fact these tragic and heartbreaking events both came not long after the advertising campaign was launched.

I wish I had cervical cancer
Penny Lown

Kerry Harvey was always the face of this campaign although the other two messages are equally powerful. Kerry would have been 29 on 14th August 2018. RIP Kerry.  Read her diagnosis and treatment story by clicking here and here. Neuroendocrine Cancer. 

I wish I had breast cancerRIP Kerry Harvey – she actually had Neuroendocrine Cancer (Pancreatic Primary)

Clearly I would rather not be diagnosed with any cancer. But if I was to be brutally honest, I’m glad I wasn’t diagnosed with a more aggressive disease, otherwise I might not be here now enjoying life with my family.  So I totally understand the motivations of this campaign and why I fully support the 2019 twitter message from one of its creators Ali Stunt (CEO of Pancreatic Cancer Action)

ali stunt tweet

You may also be interested in this article – Pancreatic Cancer vs Neuroendocrine Cancer with a pancreatic primary.  Click here to read.

Thanks for listening

Ronny

I’m also active on Facebook.  Like my page for even more news. Please also support my other site – click here and ‘Like’

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Check out my Podcast (click and press play)

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

Please Share this post

wego blog 2018 winner

PLEASE SHARE THIS POST

“What are you doing this afternoon”

video

Eight years ago today, I was sat in front of a secondary care consultant, his speciality was colorectal. I asked specifically for this consultant for two reasons, firstly, he carried out a colonoscopy some 20 months previously which turned out to be negative. Secondly, my GP had referred me to the iron deficiency anaemia clinic, and they wanted to do ….. a colonoscopy.  I changed that plan because this “non-issue” was dragging on; quite frankly I wanted it to be resolved quickly, and I wanted it to be resolved in my favour – after all, I wasn’t actually ill!

Rewind two months, I had an incidental set of blood tests ordered by a nurse following a routine visit to my local medical centre (……. “I think I’ve lost a bit of weight“).  My haemoglobin was low (even lower on repeat testing).  The GP compared my results to someone in their eighties with malnutrition. In hindsight, I should have been alarmed by that statement but instead I went on holiday to Barbados.  Apparently low haemoglobin is a sign of iron deficiency anaemia.  I suspected it would pass, either my blood results would revert to normal naturally, or they would after a prescription for some pills. That’s what normally happens, isn’t it?  I was so indifferent to the issue, I even delayed the blood tests by three weeks.

Back to 8th July 2010 ….I hadn’t really given him many clues but within minutes of chatting with the secondary care consultant (who was armed with the results of the negative colonoscopy test), he said “what are you doing this afternoon“.  I had no hesitation in saying “whatever you want me to do“.  I’m still not getting it as I saw this as a chance to get an all clear, get some pills, get back to normal.  To cut a long story short, the results confirmed I had a metastatic cancer.  If you can see it, you can detect it.

Following the scan results, I had a dozen other tests to narrow it down to Neuroendocrine Cancer (eventually confirmed by biopsy).  During these 2 weeks of tests, I finally confessed for the first time that I had been experiencing facial flushing and intermittent diarrhea. In those days, I wasn’t really in tune with my body.

I had been sitting on a beach in Barbados sipping piña coladas with my wife and neither of us had any inkling that I had a serious life threatening illness and that it had been growing inside of me for some years. Slow but sneaky? You betcha. They did some damage too – check out my treatment summary here.

I remain thankful to all those involved in the triggering of my ‘incidental’ diagnosis.  The Nurse who ordered the ‘just to be sure’ blood tests, the GP who immediately referred me to secondary care (increased my chances of being diagnosed with cancer), the secondary care specialist who was instrumental in getting to the bottom of the problem in double-quick time.

My intransigence, denial and withholding vital symptoms from the doctors didn’t really help – there’s a lesson for all there.

You can hear me talk about my diagnosis by clicking here

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

Please Share this post

Ever wonder what caused your NET?

DNA strand and Cancer Cell

OPINION.  When you’re diagnosed, you go through a whole host of emotions. It’s not just the initial shock, the disbelief, the anxiety and morbid worry produced by the words “you have cancer”, it’s other stuff such as anger and denial.  With the latter, the denial normally wears off as you finally accept the predicament.

In hindsight, the anger is interesting because there can be a mixture of thoughts including “why me“, “what could I have done to head this off“; and would you believe I was even angry that my diagnosis was going to affect my performance at work and even my personal credibility.  We all react differently but in general terms our experiences can be categorised into 3 main areas: initial reaction, distress and then adjustment.

Initially, I was frustrated I didn’t know what had caused my cancer, perhaps my thinking was that I could warn others.  Those feelings soon wore off as I discovered that no-one really knows why people succumb to certain cancers.

If you don’t know what caused your NET, you’re not alone.  According to several studies in the past 10 years, around 40% of cancers are preventable indicating that up to 60% might just be plain bad luck. Clearly this figure varies between cancer types with the biggest culprits being Lung and Skin cancer with too much exposure to tobacco and ultraviolet light respectively. However, the reports also pointed out that people can and will still get these cancers without significant exposure to the commonly preventable causes. The latest study is interesting because it raises the issue that some cancers may be totally unavoidable as they are caused by random errors associated with DNA replication.  This study remains controversial because it undermines government prevention strategies. There’s a balanced article from Cancer Research UK which is a useful read (interesting quote … “Even if, as this study suggests, most individual cancer mutations are due to random chance, the researchers admit that the cancers they cause may still be preventable”).

I carried out some research and discovered the only currently known causes of NETs are heredity/genetic in nature and this only affects a small proportion of all NETs.  As for the remainder, will we ever know?  Perhaps one day but in my opinion, not anytime soon.  One interesting find is a study funded by NET Research Foundation which is designed to discover the molecular causes of a Small Intestine NET (SiNET).  In addition, they will investigate potential environmental causes, including epigenomic and infectious causes.

I often think about what actually caused my NET but I no longer worry about what the answer might be.  I’m the first to admit I could have led a healthier life (like many others) but that may not have had any impact or involvement in my cancer diagnosis.  There doesn’t seem to be any point worrying because the clock cannot be turned back …..even if I knew, I would still have metastatic NETs. However, if the cause of my cancer was connected to a heredity condition, clearly this would be important to know. That’s only my own opinion though.

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. Help me build up my new site here – click here and ‘Like’

Disclaimer

My Diagnosis and Treatment History

Sign up for my twitter newsletter

Check out my Podcast Interview (click and press play)

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

PLEASE SHARE THIS POST