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- ASCO 2017 – Let’s talk about NETs #ASCO17 May 19, 2017
- Waiting on PRRT ….. light at the end of the tunnel? May 8, 2017
- NETwork with Ronny © – Newsletter April 2017 May 2, 2017
- The trouble with the NET (Part 3) – miracle cures April 27, 2017
- Diagnosed with Neuroendocrine Cancer? 10 questions to ask your doctor April 25, 2017
- Don’t believe the hype – 10 Neuroendocrine Cancer Myths debunked April 6, 2017
- There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient April 4, 2017
- NETwork with Ronny © – Newsletter March 2017 April 1, 2017
- In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life March 21, 2017
- Poker Face or Cancer Card? March 20, 2017
- NETwork with Ronny © – Newsletter February 2017 March 1, 2017
- It’s been 5 years since I saw a scalpel (….but my surgeon is still on speed dial) February 27, 2017
- Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD February 21, 2017
- 25 Life Lessons From a Two-Time Cancer Survivor February 20, 2017
- Things not to say to someone with cancer February 2, 2017
- NETwork with Ronny © – Newsletter January 2017 February 1, 2017
- Endoscopy for NETs – taking the camera to the tumour January 27, 2017
- Road ahead closed – Bowel Obstructions January 25, 2017
- In the news: Neuroendocrine Tumour Drug in Trial – Cabozantinib January 21, 2017
- Progress report on NETSPOT® and PRRT (Lutathera®) January 18, 2017
- Neuroendocrine Cancer: Nodes, Nodules, Lesions January 17, 2017
- Neuroendocrine Cancer: To cut or not to cut? January 14, 2017
- Does your body now have an extra organ? The MESENTERY January 4, 2017
- NETwork with Ronny © – Newsletter December 2016 January 1, 2017
- Lanreotide vs Octreotide December 28, 2016
- Keep your light burning December 18, 2016
- Neuroendocrine Tumours: a spotlight on Pheochromocytomas and Paragangliomas December 14, 2016
- Drum Roll – Ronny Allan wins WEGO Best in Show ‘Community’ 2016 December 6, 2016
- Neuroendocrine Tumours – Let’s give Carcinoid Crisis a red card! December 5, 2016
- NETwork with Ronny © – Newsletter November 2016 December 2, 2016
- NET Syndromes – chicken or egg? November 30, 2016
- Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it. November 29, 2016
- Neuroendocrine Tumours – benign vs malignant November 28, 2016
- Happy Thanksgiving November 24, 2016
- Chemo or not Chemo – that is the question November 23, 2016
- Palliative Care – it might just save your life November 18, 2016
- “You must be doing OK, you’ve not had chemotherapy” November 16, 2016
- One every 2 hours November 10, 2016
- Scans for Neuroendocrine Cancer – If you can see it, you can detect it! November 5, 2016
- Neuroendocrine Cancer – Exciting Times Ahead! November 2, 2016
- Let’s hear one massive THUNDERCLAP on NET Cancer Day October 26, 2016
- Neuroendocrine Cancer: Hurry up and wait October 21, 2016
- Did you hear the one about the constipated NET patient? October 18, 2016
- Neuroendocrine Cancer – were you irritated by your misdiagnosis? October 11, 2016
- Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had October 5, 2016
- Neuroendocrine Cancer: Patient Power! October 1, 2016
- Neuroendocrine Cancer – tumour markers and hormone levels September 28, 2016
- “Not the Stereotypical picture of sick” September 19, 2016
- Procrastination – it’s a killer September 19, 2016
- Neuroendocrine Cancer – the diarrhea jigsaw September 15, 2016
- Please vote for Neuroendocrine Cancer September 12, 2016
- Serotonin – the NET effect September 8, 2016
- Neuroendocrine is not your average cancer but it can be pretty mean August 25, 2016
- Stop talking about it, just go do it! August 24, 2016
- Not every illness is visible August 8, 2016
- Neuroendocrine Cancer Nutrition Blog 4 – Food for Thought? August 2, 2016
- Living with Cancer – or Cancer Survivor? August 1, 2016
- Exercise and Cancer: Forward is Forward July 27, 2016
- NET Cancer: Somatostatin Receptors July 25, 2016
- NET Cancer: Troublesome Thyroids July 23, 2016
- What you don’t know might kill you June 24, 2016
- Neuroendocrine Cancer – it can be ‘smoke and mirrors’ June 15, 2016
- Intra-Operative RadioTheraphy (IORT) for Neuroendocrine Cancer – new landmark treatment launch June 13, 2016
- Let’s talk about living with NETs June 9, 2016
- Make some noise for a silent cancer June 8, 2016
- It’s scary searching Cancer online June 7, 2016
- Turning points May 28, 2016
- The 5 E’s (of Carcinoid Syndrome) May 25, 2016
- PRRT and Chemo combination therapy – on trial May 20, 2016
- Don’t worry, I really am OK! May 19, 2016
- I can May 9, 2016
- Never mind the Bollocks April 21, 2016
- NET Cancer – unexpected detours April 21, 2016
- Living with Neuroendocrine Cancer – it takes guts April 15, 2016
- 6 years since liver surgery April 12, 2016
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It’s no secret that I and other patients (Helen and Katia) have been helping Ipsen and their website consultants (Kanga Health) with a new site designed to support and help all Neuroendocrine Tumour patients. I’m delighted to inform you via this awareness campaign that it will launch on 10 November 2016. The site is very aptly named ‘Living with NETs’. You can have a direct involvement with this campaign too. Make your voice heard via the Ipsen campaign THUNDERCLAP (click on thunderclap).
Thunderclap is a social media system designed to release a synchronised campaign message at a specific time on a specific day, therefore enhancing and amplifying the message as it reaches hundred of thousands or (hopefully) millions of people within minutes. It only takes a minute and you can choose which social media platform to use (Facebook, Twitter, Tumbl). You can also copy and paste to any other source widening the audience even further. The ability to share your support can also help spread the campaign message and the more people who sign up for this campaign, the louder the THUNDERCLAP will be on 10 Nov. Let’s make some noise please! Let’s get the ‘social reach’ of this thunderclap into the millions on 10 Nov 2016 at 3pm CET.
I’m quite excited about this new initiative from Ipsen Group (the manufacturers of Somatuline (Lanreotide)) and not only because I feature on the site but because I sincerely believe it has the potential to be a fantastic facility for anyone interested in NETs, whether they be a patient, a carer, a health worker or anyone who wants to find out more. And it’s not just learning about NETs, it’s so much more than that. All will become clear on 10 Nov.
Those who know me best will know that I fervently believe that patient experience and patient stories are the best tools we have for awareness and this site is strong in this element. Doctors might be the experts in cancer but you’re the expert in how cancer has affected you and your stories contain valuable messages. Do you know what? I’m sensing a change in thinking, I’m sensing that more and more people and their organisations are starting to come to the conclusion that patients have a part to play in all sorts of medical areas, we are after all, the most underused people in healthcare.
On the subject of Doctors, I’m of the solid opinion that we should be working more in partnership with our Doctors whether they know about NETs or not. I’m delighted to see Ipsen using NET specialists as part of this site and you can hear them talk too!
Please add your voice! You can help get this THUNDERCLAP to millions by sharing your support.
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When I was diagnosed with metastatic Neuroendocrine Cancer on 26 July 2010, I just wanted them to hurry up and fix my body so I could get back to normal. That’s what happens to cancer patients with distant metastases is it not? My expectations of what should happen turned out to be wildly inaccurate and in hindsight, I was also wildly naive. You see, with Neuroendocrine Cancer, particularly well-differentiated, low or medium grade tumours, it sometimes doesn’t work as fast as you would think.
The complexity of the condition needs some consideration as the physicians work up a treatment plan. I’m quite happy and content they took their time, rather than rush into the wrong decisions. If you think about it, this is an advantage with low and medium grade NETs……you normally have some time.
Here’s a very short video discussing this during a patient video shoot: Click here.
I had a confirmed biopsy result following some incidental CT scans and other tests. However, they now needed further checks and marker tests to work out the extent of the disease. So the timeline leading up to major surgery ended up like this:
Diagnosis: 26 July 2010. Grade 2 Small Intestine NET with distant metastasis (Stage 4)
Chromogranin A and 5HIAA: submitted 28 July. Results received 13 Aug – both elevated, indicating and confirming tumour bulk and function status respectively
Octreotide Scan: 17-19 August. Report issued 24 August – confirmed CT plus additional distant hotshots. Also confirmed my tumour receptors were avid to somatostatin analogues.
Daily Octreotide Injections: Started 9 September to control syndrome (derisk surgery)
Referred to NET Multi-Disciplinary Team (MDT): 15 September – they now had sufficient data to form a treatment plan.
Holiday: Late September (it was booked and I felt OK, why not!)
Further MDT assessment: 1- 7 October
Bland Liver Embolisation: 19 October
First Surgery: 9 November – to remove primary and debulk local and regional spread.
You can read the rest of my treatment background here.
So it took 75 days from diagnosis to opening me up to remove the first batch of tumours. With reasonably slow-growing tumours, that isn’t really a long time when you consider they had probably been growing inside me for several years. I’m sure others waited even longer.
Sometimes rushing straight into the operating theatre isn’t really the best option. I’m still here!
Keep calm and hurry up and wait!
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It’s a joke right? Not really and it’s not very funny either!
NET Cancer is very heavily associated with diarrhea, either as a symptom of one of the NET Syndromes (yes there is more than one …..) or as a result of surgery or certain other treatments. Occasionally, these symptoms and side effects can all combine to make it quite a nasty side effect; and for some a debilitating condition.
In my blog on IBS, I said that many NET Patients were misdiagnosed with this condition prior to their correct diagnosis of NET Cancer. I also hinted that NET Patients may experience “IBS-like” symptoms after their treatment, particularly following surgery on the GI tract. I also pointed out that IBS can be diarrhea or constipation based, and there’s also a mixed category.
I must admit to being surprised to find myself with feelings of constipation 4 or 5 years after my treatment and I’ve set about trying to find out why that might be. To understand why I’ve got to this stage, I needed to assess the history of my treatment and what I’ve changed in an attempt to improve my Quality of Life (QoL).
When I underwent my primary surgery (Nov 2010), my surgeon said it would take months for my ‘digestive system’ to return to some form of normality. I soon found out what he meant, I seemed to be permanently affixed to a toilet seat (plenty of reading opportunities though ….. every cloud!). I suddenly realised that I needed to start looking seriously at my diet. I did find some improvements by trying to eat things that would bulk up my stools vs trying to avoid things that might increase frequency (i.e. I wanted a reduction in frequency combined with a bulkier stool). Eventually, I settled on a regime for the first couple of years and to be honest, I didn’t need to change my diet in any radical sense. I was also determined not to take any medication (I was taking enough) and wanted this to work as natural as possible.
Things were still not ideal and in 2013, I even remember saying to my Oncologist that although I was never misdiagnosed with IBS, I felt like I now had it. I decided to attack this issue following professional advice from one of the eminent experts in the NET specialist dietician world – Tara Whyand. My regime was now based on science, that is checking the nutrient levels were OK (particularly ADEK and B12), taking supplements to help with deficiencies, tackling things such as malabsorption and diet.
The patient has a big part to play in any improvement strategy, so I also experimented more and completely changed my breakfast and lunch regime to oatmeal/porridge and toast which made a significant difference. I started to avoid eating large meals and I reduced fat consumption generally. I started taking probiotics to counter the effect of any bacterial imbalance as a result of my surgery (i.e. to combat SIBO). To keep track of everything, I set up and maintained a detailed diary to help identify things making it worse, tinkering as I went along. For those who are contemplating this sort of strategy, let me tell you – it takes time, effort and patience!
At the beginning of this year, I was making excellent progress and my frequency was now once or twice per day – i.e. I felt like a normal bloke 🙂 Quality was not consistently good but I’m of the opinion, this may be something I need to live with. Stomach cramps were reduced, gas and bloating reduced (I’m fairly confident that was down to probiotics). Happy days, my strategy has worked. I reduced my ‘visits’ by 300% without any medicine.
However …. have you noticed, there’s always a ‘however’ with NET cancer?
Although I’m generally well, this year has highlighted that the balance is not quite right. My ‘visits’ seem to last longer due to a consistent feeling of incomplete emptying – i.e. movement is OK but is followed by what seems like constipation. Additionally, I’ve had three major episodes of constipation and pain with no ‘movement’ for 24-36 hours. This happened in May, September and December 2016. My diary now has ‘zero’ entries in the daily bowel movements column, something I never thought I would see again in my lifetime!
When you’ve had small intestinal surgery, as many midgut NET patients have, this sort of thing can be extremely worrying. A bowel obstruction can be dangerous and I’d like to avoid additional surgery at this stage. The second occurrence was more severe and the pain lasted for 1-2 weeks. Fortunately, the issues were eventually settled and appear to have been a result of a sluggish system, although my scans will check to see if any issues in that area might have been contributing. (Note – lactulose (oral) is awful, will never touch it again!)
So … am I a victim of my own dietary regime success? That’s what I’m currently thinking ….. and I’m intending to work with my health professionals to address this issue. The GP who assessed my constipation and pain in September has told me to stop taking a Calcium/Vit D supplement which was prescribed by the same practice at the beginning of the year (….long story but it was a counter to an osteoporosis risk that I have via long-term use of Clexane blood thinners). I already get enough calcium and vitamin D through the normal channels plus supplements, so low risk. I also upped my dosage of probiotics earlier this year from 5 billion to 20 billion as I remember that had a minor effect on gas and frequency improvement. I’ve reversed that to see what happens, and going OK so far. I’m now tinkering with my diet again, reducing my fibre intake and then build up again slowly. Additionally, I could probably do with more exercise and more water! Perhaps my Lanreotide is having some effect too?
Is it just me with constipation issues? No, I carried out some covert searches on forums and found this issue has been mentioned numerous times. I’ll keep this blog live and hopefully find a resolution.
I seem to remember a few years ago thinking constipation would be a luxury. I can assure you it isn’t – things need to keep moving, the opposite is much worse!
I suspect we need science and some specialist NET research in this area, not sure the over the counter prescription is the optimum solution.
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Look on any site about Neuroendocrine Tumours (NETs) and you’ll find the term IBS (Irritable Bowel Syndrome) frequently mentioned. That’s because it’s a common misdiagnosis for many before being formally diagnosed with NETs.
But what exactly is IBS, why is it such a common misdiagnosis for many NET patients and how can these misdiagnoses be prevented or reduced in future? I just spent a few hours doing an online training course on IBS and I want to pass on some stuff I found to be very useful. I have never been diagnosed with IBS but having researched the issue through some training, I can understand why it might be in the thoughts of a general practitioner for many scenarios. Much of my research was focussed on the British Society of Gastroenterology (BSG) who sponsored the online course I completed which also used material from their magazine Gut, a leading international journal in gastroenterology.
What is IBS?
Irritable bowel syndrome (IBS) is a common, long-term condition of the digestive system. It can cause bouts of stomach cramps, bloating and excessive wind, diarrhoea and/or constipation, feeling of incomplete emptying, mucus in stool; and many other symptoms (see NHS IBS site) The symptoms vary between individuals and affect some people more severely than others. They tend to come and go in periods lasting a few days to a few months at a time, often during times of stress or after eating certain foods. IBS is a heterogeneous condition with a range of treatments. There are in fact different classifications of IBS and the diagram below supports the list with some context:
- IBS-D – diarrhea based
- IBS-C – constipation based
- IBS-M – mix of both diarrhea and constipation
You can see why someone presenting with diarrhea or IBS-D type symptoms might be automatically assumed to have IBS despite the fact that these symptoms could also apply to many other conditions including several cancers. However, what I also found is that in the UK, there is now updated guidance from NICE (National Institute for Health and Care Excellence) to aid GPs and other physicians on how to properly diagnose IBS. In fact, the online course I undertook is one of many now being offered to medical staff as part of the new guidance. That sounds like a good thing in practice (although I did notice some differences between the BSG recommendations and what is published by NICE…….. £ )
How is IBS diagnosed?
That is considerably complex as the symptoms are fairly general. However, I was encouraged to find that doctors should assess any ‘red flag’ indicators that would need referral to secondary care before any firm decision on IBS was made. These include (but not limited to), unintentional and unexplained weight loss, rectal bleeding, family history of bowel or ovarian cancer, a change in bowel habit to looser and/or more frequent stools persisting for more than 6 weeks in a person aged over 60 years, anaemia, abdominal masses, rectal masses, inflammatory markers for inflammatory bowel disease. That’s very interesting because in 2010, after mentioning some unintentional weight loss, my GP said ‘anaemia’ to me and referred me to secondary care. Perhaps I was lucky but perhaps, my GP’s team were just professional and thorough? That said, if you’re with me so far, you can see why IBS might be an easy diagnosis to make for someone presenting with either diarrhea/constipation issues with no other obvious symptoms or abnormal test results (particularly IBS-D).
Why might NETs be frequently misdiagnosed as IBS?
Using the NICE guidelines, I noted there are a range of tests to preclude other diagnoses including: full blood count (FBC), erythrocyte sedimentation rate (ESR) or plasma viscosity, c‑reactive protein (CRP), antibody testing for Coeliac disease. Whilst abnormal results of these tests might show up something to investigate further (i.e. FBC – haemoglobin worked for me), none of them include looking ‘inside’ the patient and I guess there is a resource/finance issue involved here.
In fact, the guidelines also list a number of tests that are NOT necessary to confirm a diagnosis of IBS. These include: ultrasound, rigid/flexible sigmoidoscopy, colonoscopy, barium enema, thyroid function test, faecal ova and parasite test, faecal occult blood, hydrogen breath test. You can see the issues ………..
The guidelines go on to say that a diagnosis of IBS should be considered only if the person has abdominal pain or discomfort that is either relieved by defecation or associated with altered bowel frequency or stool form. This should be accompanied by at least two of the following four symptoms:
- altered stool passage (straining, urgency, incomplete evacuation)
- abdominal bloating (more common in women than men), distension, tension or hardness
- symptoms made worse by eating
- passage of mucus.
Other features such as lethargy, nausea, backache and bladder symptoms are common in people with IBS, and may be used to support the diagnosis
I also noted that the causes of IBS are inextricably linked with Psychological issues and the guidance also includes therapies including cognitive behavioural therapies (CBT) relaxation therapies, and hypnosis.
So if you’re one of the unlucky ones who has presented with “IBS like” symptoms and have normal test results as per above, you may not get the opportunity to get to further testing to find the true diagnosis. It’s possible that you saw a physician who has not followed guidelines for diagnosing IBS if indeed such guidelines were available to him/her. The inclusion of psychological issues also connects with many anecdotal stories of NET patients being told they needed psychological help before eventually being diagnosed with NETs.
I can see many similarities in the descriptions of IBS symptoms and the sort of things you can read on NET forums – strangely including the effects of NET Cancer surgery and other treatment after diagnosis.
Slight digression but if this subject is of interest, you may like to comment. I once said to my Oncologist that I felt as if I had IBS since my surgery and somatostatin analogue treatment. In fact, I told him that I thought my bowel was more than irritated, it was bloody angry 🙂 During my research, I couldn’t help noticing that some of the suggestions and recommendations for IBS are similar to that offered to a post surgical NET patient. You may therefore like my blog series on Nutrition which was co-authored by a NET specialist dietician who is also IBS aware.
Preventing or Reducing a Misdiagnosis of IBS (all illnesses)
The course looked at this angle as it was clearly keen to emphasise this to medical people going through the module. The NICE guidelines read like a process which must be strictly followed but at the end of the day, they are just ‘guidance’ and should not stop doctors thinking outside the box.
A recent study suggested that as many as 1 in 6 patients (~16%) with symptoms of IBS had another disease. Approximately 7% had Crohn’s disease, 3% coeliac disease, and 2% microscopic colitis when they were formally tested. Patients with IBS-diarrhoea predominant more often had abnormalities than those with IBS-constipation predominant (interesting for NETs). The paper stresses the importance of tailored investigation of patients presenting for the first time.
One in six patients with symptoms compatible with IBS without alarm features in this selected group exhibited organic GI disease following investigation. Assessment of alarm features in a comprehensive history is vital to reduce diagnostic uncertainty that can surround IBS. You can, if you wish, read the abstract of the paper on the link below.
The issue here is that people not meeting the criteria for further checks may be precluded for scans and other tests due to lack of clinical evidence and their diagnosis of IBS will stand. As this was a study, clearly some of them might have gone on to present with sufficient clinical evidence to warrant more checks and subsequent diagnosis of something else at a more advanced stage. Clearly this sounds familiar with NETs. However, looking at the figures above, I suspect the figures for NETs IBS misdiagnoses are pretty small in comparison to those who are correctly diagnosed with IBS. To put that into context (in the UK), according to the NHS, IBS is thought to affect up to one in five people (10,000,000) at some point in their life, and it usually first develops when a person is between 20 and 30 years of age and around twice as many women are affected as men. Compare that with a UK NETs prevalence of around 25-35,000 (guesstimate). However, one misdiagnosis is one too many.
Having done this course and read the accompanying references (some only abstracts), I can see the scope for people with many different illnesses being misdiagnosed with IBS. However, the use of alarm symptoms and ref flag indicators should be helping to reduce this. I’m guessing that many people in first line care may not be fully aware of the IBS guidelines to be able to take heed. I’m also guessing that in the UK (at least), a 10 minute appointment with a busy GP is just not going to solve some of these symptom clashes and many visits might be required to move forward.
It’s really difficult to advise anyone going through a diagnosis of IBS as to how to approach a physician who says they have IBS and they think this is wrong. In the case of NETs, other cardinal symptoms may be of use in convincing physicians (e.g. flushing). Armed with this knowledge, I would say to anyone who suspects NETs but are faced with an IBS diagnosis, take a copy of the BSG and NICE guidelines to your doctor and tick off all the differential ‘ref flag’ and ‘alarms’ issues ensuring that each has been tested before accepting the IBS diagnosis.
References used to support compilation of this blog:
Prevalence of organic disease at colonoscopy in patients with symptoms compatible with irritable bowel syndrome: cross-sectional survey (abstract only, not full article)
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Steve Jobs died 5 Oct 2011. RIP Steve, you certainly made a difference to the world of technology and that is still being felt today. I have a number of google alerts setup and every day the emails arrive in my inbox. The longest email is always the Steve Jobs one, i.e. Steve Jobs is written about more than Neuroendocrine Cancer and other connected subjects. That’s interesting because Neuroendocrine Cancer is the type Steve had.
I’ve mentioned Steve Jobs a few times previously, mainly in my blog The Anatomy of Neuroendocrine Cancer. I wrote that blog when I was frustrated at the constant misreporting of Neuroendocrine Cancer as other types of cancer. Others included Nick Robinson (see blog The Devil is in the Detail) and Wilko Johnson (The Ecstasy of Wilko Johnson). I’ve also suggested in my blog ‘Every Day is NET Cancer Day’ that we need high-profile patient Ambassadors and despite his death, Steve Jobs would have been quite a catch. Curiously, the same thing is happening with Dag Kittlaus (Siri creator) who was diagnosed with a pNET last year.
A lot has been written about Steve’s cancer experience and much of it is full of ‘what ifs’. However, I’d like to focus on the facts that are known and we can be almost certain about. That said, the precise detail that we (as NET patients) might want, is probably only to be found in Steve Jobs’s medical documents.
How was it found? In 2003, Steve was having a CT scan to examine his kidneys and ureter, as he had developed recurrent kidney stones beginning in the late 1990s. A suspicious lesion was spotted on his pancreas. To cut a long story short, he eventually had more specialist scans and then a biopsy which diagnosed a type of Neuroendocrine Tumour. There are many mentions of Insulinoma which is reported to have a 10% malignancy rate (ISI Book – Woltering et al). It isn’t clear whether Steve had any presentational symptoms of an Insulinoma at this point (i.e. hypoglycemia). There is also some chatter online about his tumour being a Glucagonoma (another type of pNET).
Steve initially tried alternative medicine before having surgery 9 months after diagnosis. There are reports of his medical team urging surgery earlier and his biographer stated that Steve had later regretted this delay. One of his Doctors is reported to have said “Steve was a very thoughtful person. In deciding whether or not to have major surgery, and when, he spent a few months consulting with a number of physicians and scientists worldwide as well as his team of superb physicians. It was his decision to do this”. He is reported to have gone on to have a ‘Whipple’ type operation in 2004. It was only then, that his condition was made public. During that operation, 3 lesions were reported on his liver.
It is common knowledge that Jobs had a liver transplant in 2009 in Tennessee (he was on the list in California and Tennessee). In between his Whipple and then, he appears to have lived (and worked) with his disease and it’s consequences. His issues appear to have been exacerbated by his excessive vegan diet/fads and the effects of the Whipple surgery (many of you will be aware of these effects). For example, he would spend weeks eating the same thing and then suddenly change his mind and stop eating it. He’d also go on fasts. His condition immediately prior to the liver transplant was said to be ‘poor’ and losing more weight (he had been noticeably thinner for some time).
In 2010, Jobs started to feel sick again. He would lose his appetite and begin to feel pains throughout his body. His doctors would do tests, detect nothing, and reassure him that he still seemed clear. In early November 2010, he was in pain, stopped eating and had to be fed intravenously by a nurse who came to his house. The doctors found no sign of more tumours, and they assumed that this was just another of his periodic cycles of fighting infections and digestive maladies.
In early 2011, doctors detected the recurrence that was causing these symptoms. Ultimately, he developed liver, bone, and other metastases. He had a further extended leave of absence from his job before stepping down as Apple CEO in Aug, Steve Jobs eventually died 5 Oct 2011.
Notwithstanding the Pancreatic Cancer vs Neuroendocrine Cancer issue, I carried out my research mainly using two articles of the many you can find out there:
- “And one more thing” about Steve Jobs’ battle with cancer
This is a long article and totally fascinating. Some of the evidence is presented using extracts from Walter Isaacson’s book ‘Steve Jobs’
A Tumor Is No Clearer in Hindsight. This article comes to similar conclusions than the one above but it’s shorter and easier to read. It’s from the New York times and was written after the dust settled on Jobs’ death (i.e. when more facts were available). There is also input to this article from NET specialists Dr Wolin and Dr Libutti.
“A tumor is no clearer in hindsight” is a good summary on the basis that I would have liked much more detail! During my research, I found many mentions of Insulin as stated above but only one or two mentioning Glucagon, a hormone associated with another pNET type – Glucagonoma. However, looking at this tumor type in the ISI Book (Woltering et al) and the Jobs diagnostic and treatment story, I have some doubts whether this was the precise tumor type. I have some other searches in progress hoping to find something concrete.
“Thinking Differently“ There is no doubt that Steve Jobs was an amazing and very interesting character. You just can’t see Apple being the Apple it is today without his intervention. He was famous for being ‘unconventional’ and ‘thinking different’ and I get that element of his character. I just can’t help thinking that perhaps he should have been more ‘conventional’ with this thinking and approach to treating his cancer. However, we just don’t know what advice he was receiving and what advice he accepted or rejected. As for the ‘Pancreatic Cancer’ thing – I’ve said this before, I believe patients only say or interpret what their doctors say to them in regards cancer type.
“The most famous patient ambassador we never had”. I don’t mean any disrespect by that, I’m just emphasising that we need so much more awareness of our cancer and a high-profile patient could do so much to help in this area. Steve would have been a fantastic advocate for Neuroendocrine Cancer and there’s an area where perhaps thinking different might be the way ahead. However, I have a suspicion that very famous people don’t really want to talk about their illness and Steve Jobs might even perceive that as a weakness.
And one more thing ……. you may also find this article useful. It’s titled “And one more thing”
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