Neuroendocrine Cancer: To cut or not to cut?


surgery

OPINION – nothing in here should be taken as advice from the author. 

On paper, surgery remains the only potentially ‘curative‘ option for Neuroendocrine Tumours (NETs) but there are stage, grade and anatomical constraints to that opinion. Many people get ‘twitchy’ about any inference of the ‘C word’ (cure) but our most eminent NET specialists use the term frequently including in the major treatment guidelines.

I use the word ‘curative’ with some reservations because for many who are diagnosed at an advanced stage, surgery will not cure but will debulk or cytoreduce as much tumour as possible in order to palliate symptoms and improve quality of life.  This is a big deal because NETs is one of a small number of cancers where debulking surgery can often provide a survival advantage for metastatic cases.  One of the reasons it’s a big deal is because with more aggressive cancers at an advanced stage, surgery just might not be offered. It follows that surgery is most likely adding to the fairly decent NETs survival statistics, including for those with metastatic disease at diagnosis.  More on this below.

That’s a fairly simplistic explanation on behalf of surgery. However, as we all know, nothing in Neuroendocrine Cancer is simple.  There are always a number of factors involved and every decision can in some way be on an individual basis.  There are guidelines for treatment of most types of NETs but ……. they are just that – guidelines.  NET Centres and NET Specialists are encouraged to use these guidelines, for example, a European Centre of Excellence has ENETS Guidelines.  There is a North American equivalent set published by NANETS and NCCN have a decent complementary set.  The UK and Ireland guys (UKINETS) also published a set although many UK centres are ENETS accredited.

Whether to cut or not to cut (or watch and wait then cut if necessary) and the sequencing of treatments is a really difficult issue for NET specialists.  I quite liked watching these two video clips and they cover this issue quite nicely including some interesting abdominal challenges in surgery from known NET Specialists – these short video sessions are highly recommended:

a.  Risk Stratification and Management of NETs – click here

b.  Surgical Considerations for NETs – click here

Surgery can sometimes be a tough call (……to cut or not to cut?)

It is an area where I have some sympathy for physicians and surgeons who sometimes have tough decisions to make. Surgery is risky, particularly where people are presenting in a weak condition, perhaps with very advanced disease, secondary illness and comorbidities.  I also suspect age is a factor (I was surprised to find myself considered ‘young’ at 55).  Physicians and surgeons need to weigh up these risks and the  consequences of the surgery against a ‘watch and wait’ or alternative non-surgical approach.  This would normally be discussed via a ‘Tumor Board’ or Multi-Disciplinary Team (MDT) meeting. However, and although imaging helps, the situation is not really 100% clear until the surgeon ‘gets inside’.  Remember, all physicians and surgeons are bound by the ‘Hippocratic oath’ of “Do no harm“.  Sometimes with NETs, it’s a tough call not only before they go inside but whilst they’re inside.

Surgery should be a carefully considered treatment (…..think before cutting?)

I read many stories from many different parts of the world and I also hear them from people who contact me privately on a daily basis.  Some of them are perplexed why they are not receiving surgery and some are not entirely happy with the surgery they received. Many are perplexed by different advice from different doctors.  I find it very difficult to respond to many. My most frequent answer is “ask your doctor” but I’m normally pretty helpful with the sorts of questions to ask.

One thing which tends to surprise people is speed – or lack of it!  With lower grade NETs, the extent of the tumour (stage), its metastases, histological grade and secretory profile should be determined as far as possible before planning treatment. I like to remind people that in 2010, it took from 26 July to 9 Nov before my body saw a scalpel. With Grade 1/2 well differentiated NETs, you can often get away with that gap.  Sometimes when you are diagnosed with NET, it’s a case of ‘hurry up and wait’.

Back to the guidelines, of course most people will probably fit reasonably well into the relevant guidelines flow chart.  A very generic example here (not for active use please, your area may have an alternative based on availability of treatments etc):

algorithm-ukinets-page-2-gutjnl-2012-january-61-1-6-f2-large
Very generic treatment algorithm UKINETS – Ramage JK, Ahmed A, Ardill J, et al. Guidelines for the management of gastroenteropancreatic neuroendocrine tumours (NETs) Gut 2012;61:6-32.  For example purposes only please.

Timing of Surgery (……to cut now, to cut later?)

Following on from the scenario above, timing of surgery can be another factor in a ‘watch and wait’ situation. I guess this might be something in the back of the minds of more cautious doctors when faced with a rather indolent and very slow growing Neuroendocrine Tumour. For some this can be a sensible thing – ‘kicking butt’ in a surgical context is sometimes the wrong approach. The worry is that if they are not a NET specialist, they may not fully understand the vagaries of neuroendocrine tumor behaviour (i.e. they all have malignant potential – WHO 2010/2017). We’ve all heard the stories of people being told it’s not cancer, right? Please note my article Benign vs Malignant.  However, you may be interested in this post from someone who is one of the most experienced NET surgeons on the planet.  Dr Eric Liu talks quite candidly about the ‘timing’ of surgery suggesting a ‘watch and wait’ approach in certain scenarios.

Of course cutting now might actually be a pre-emptive measure. For example, if physicians can see a growth which is critically placed close to an important structure such as a blood vessel or the bile duct or bowel. Even if the disease cannot be cured, removing the tumour may prevent problems in the future by removing disease from key areas before the vital structure has been damaged or blocked. For example, my surgeon conducted a high risk operation on some desmoplasia (serotonin fibrosis) which had encircled my aorta and cava almost occluding the latter. There’s an excellent surgery pamphlet from NET Patient Foundation and I strongly recommend a read as it’s an experienced surgeon’s approach to surgery with NETs (actually written by my own surgeon Mr Neil Pearce!).  Click here to read it.

One NET centre in USA has published very detailed surgical statistics indicating that surgical cytoreduction in NET patients has low morbidity and mortality rates and results in prolonged survival.  Their conclusion went on to say “We believe that surgical cytoreduction should play a major role in the care of patients with NETs”.  You can read the extract from this document by clicking here.  Authors: Woltering et al.

Was Steve Jobs a smart guy who made a stupid decision when it came to his health? It might seem so, from the broad outlines of what he did in 2003 when a CT scan and other tests found a cancerous tumour in his pancreas. Doctors urged him to have an operation to remove the tumour, but Mr. Jobs put it off and instead tried a vegan diet, juices, herbs, acupuncture and other alternative remedies. Nine months later, the Neuroendocrine Tumour had grown. Only then did he agree to surgery, during which his doctors found the cancer had spread to his liver. The rest is summarised in my article Steve Jobs.

Summary

This is a difficult subject and no one size fits all. Treatment for NETs can be very individual including surgery.  I guess you need to be comfortable with your team. I was lucky, in that I lived close to a NET Centre.  I was referred to their surgical team once my staging and grading were complete and I was stabilised on somatostatin analogues (carcinoid syndrome under control).  I realise it’s difficult for many but I always say to people who make contact, it’s best if you can be seen by a NET centre or an experienced NET specialist – at least be guided by one if not possible or practical.  Personally, I think the surgeon’s experience in dealing with NETs is really important.  But even experienced NET centres/specialists have to make tough calls.

You may benefit from my 10 Questions article which also has links to NET Specialists.

Thanks for reading

Ronny

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Neuroendocrine Cancer: Hurry up and wait


hurry up and wait

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. My expectations of speed 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 and there are good reasons for that.

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 to get the ducks in a line (and there are some pretty important ducks in that line).

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.  Met with Oncologist. Grade 2 Small Intestine NET with distant metastasis (Stage 4)

Chromogranin A and 5HIAA: submitted 28 July. Results received 13 August – 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 and consultations: 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!

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

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

Ronny Allan is an award winning patient leader and advocate for Neuroendocrine Cancer.

 

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Chasing normality

Chasing NormalityCancer isn’t always a one-time event. It can be a chronic (ongoing) illness, much like diabetes or heart disease. Cancer can be closely watched and treated, but sometimes it never completely goes away. The cancer may be ‘controlled‘ with treatment, meaning it might seem to go away or stay the same, and it doesn’t grow or spread as long as you are getting appropriate treatment. Sometimes the treatment shrinks the cancer, but the cancer is still there – it doesn’t go away and stay away – it’s not cured.  More people are living with cancer than ever before and the ratio is on the increase thanks to better treatments.

For the first 18 months following my diagnosis, I underwent a significant number of treatments and tests.  As I continue living with my cancer, that tempo doesn’t seem to have gone away.  Every 6 months (and sometimes in between too) I undergo a plethora of tests and appointments.  Some tests are annual.  I feel I’m stuck in this perpetual surveillance world – sometimes I’m not sure what to expect or what’s going to happen next!  I suspect this is the case for many Neuroendocrine Cancer patients.

I saw a post on one of the forums last week – the question was “what does stable actually mean”. The answer may seem obvious but one reputable website defines it as follows “A doctor may use the term controlled if tests or scans show that the cancer is not changing over time. Another way of defining control would be calling the disease stable“.  Worth noting that “not changing” can also mean ‘not decreasing’.

It’s 2 months until my next Multidisciplinary Team (MDT) and if I was a betting man, I would guess they will say “stable” having confirmed no remnant tumour growth and my blood and urine tests will be “unremarkable” (don’t you just love those medical terms!).

So is this normal?  I guess it could be for me but I like to tie quality of life into my ‘normal’ definition.  I also think that living with an incurable cancer is not so much about “getting back to normal” but rather what’s normal for me now (i.e. I can’t put back bits of my small intestine back in!).  As I’m tying this into quality of life which is something I’m constantly trying to improve, I must therefore be constantly trying to improve my ‘normal’. I guess for me, normal isn’t really a static thing.

Being stable and finding a new normal doesn’t mean you don’t need support.  The surveillance scans and tests are a given but the support isn’t always there in the quantity and quality you might like.  I may be stable but I still need support and often this can only be acquired by being a proactive patient.  I have a number of ongoing issue which might present bumps on the road ahead (at least the ones I can see) and these present a challenge to my normality.

  1. Thyroid lesion (ongoing).  Although it has not grown since discovered. Watch and wait.  Check out my Thyroid blog for the full story.
  2. I’m on long-term blood thinners (Clexane) due to the discovery of blood clots in one of my lungs following major surgery in 2010.  To keep an eye on the risk of developing osteoporosis arising from long-term use of this drug, I have an annual DEXA scan which measures bone density. My last scan indicated a slight reduction (nothing drastic).  I’m not getting any younger, so my bones are starting to ‘moan’ a little.
  3. I’m not syndromic but I do have some post surgical side effects.  Anyone who’s had classic NET gastrointestinal or pancreatic surgery will know the issues. It’s a constant battle but I’ve made some improvements by understanding why these side effects occur and taking action to reduce their impact.  For example, since my ‘turning point’ in 2014, I’ve managed to reduce bathroom visits by 300%, so things are pretty normal frequency wise.  I continue to work on this.  Small intestinal bacterial overgrowth  (SIBO) is something I’d like to explore with my MDT, particularly as a big increase in my probiotics dose made a difference. Check out my Nutrition series of blogs.
  4. My fatigue levels are vastly improved since my 2014 turnaround and I put this down to my turnaround changes in the last two years including keeping active and reducing stress levels.  I continue to work on this too.

A new normal can be found.  They can be improved.  However, they need to be guarded by being proactive and positive.   And …. it’s not the same for everyone.

Thanks for listening.

Ronny

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