Home » Living with Neuroendocrine Cancer » Neuroendocrine Cancer: To cut or not to cut?

Neuroendocrine Cancer: To cut or not to cut?


surgery

I think it’s currently safe to say that surgery remains the only real ‘curative’ option for Neuroendocrine Tumours (NETs).  I use the word ‘curative’ with some reservations because for many, surgery will not cure but will debulk or cytoreduce as much tumour as possible in order to reduce symptoms and improve quality of life.  In fact, NETs is one of a small number of cancers where debulking surgery provides a survival advantage for many who are at an advanced stage. This is a big deal when you consider 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, even 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.  The UK and Ireland guys also have a set (UKINETS), although many are ENETS accredited.

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

This 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 despite modern imaging, 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 before they go inside and 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. 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 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 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 (including carcinoid) tumours (NETs) Gut 2012;61:6-32.

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 blog 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.

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 Allan

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7 Comments

  1. Kendra says:

    When you learn that cutting is the “cure” for this cancer, your first response is, ok let’s get this thing out of me ASAP! But it turns out I’m not one of the lucky ones that has clear options. It’s been a struggle to decide.

    My tumor was found Sept 2015. It’s 4-5cm and located in my heart and wrapped around my right coronary artery. That’s not a typo. That’s cm, not mm. I’ve consulted with a couple prominent heart surgeons and my case was reviewed by a tumor board.

    Only a very few surgeons would even attempt the surgery. They could debulk the tumor and deroof the artery, but not get all of it. It’s a risky surgery and there would be no guarantee I would wake up from it.

    I also have the SDHB mutation which has a higher risk of metastasis. Since I’ll still have the chance of mets whether I have surgery or not, my decision has been based on quality of life.

    My heart is still functioning. I’m figuring out ways to deal with the symptoms. Cutting out a big chunk of my heart may cause more uncomfortable symptoms. So I wait. I wait for my body to tell me it’s time. And I live life with acceptance of my limitations.

    Liked by 1 person

    • Ronny Allan says:

      so sorry to hear that Kendra. As you say, you find yourself not through choice in the “not to cut” category but there appears to be medical reasons for that not least the risk. I really hope there is something round the corner for you.

      Like

  2. Rindy says:

    Good info. Wish I had known more of the risks of surgery though. I developed extensive scar adhesions that cause as many problems than the cancer itself. I had repeated bowel blockages and ended up having to have another surgery to remove them with no guarantee that it won’t just grow back.

    Liked by 1 person

  3. greta stifel says:

    Awesome information… thank you Ronnie Allen for providing us all such valuable priceless, timely information on all things NETS

    Like

  4. greta stifel says:

    Awesome information

    Like

  5. Vicki says:

    Really appreciate the algorithm than made common sense.

    Liked by 1 person

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