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Ronny Allan
Surgery can sometimes be a tough call (……to cut or not to cut?)
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, citing the side effects in particular. Clearly patients need to balance the risks of cutting and not cutting.
Many are perplexed by different advice from different doctors. Quoting guidelines are fine as top level information direction but I find it very difficult to respond to many when they should be directing these questions at their doctors. 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), 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‘. I’m still here to tell this particular tale, perhaps there is a connection.
I had a surgeon who was known for his aggresive approach to surgery but he was highly skilled. A term I see a lot is “one surgeon’s inoperable is another’s operable”. Perhaps I had the latter.
Back to the guidelines, of course most people will probably fit reasonably well into the relevant guidelines flow chart. A very generic example here but always consult your national/regional treatment guidelines (this algorithm below is not for active use please, your area may have an alternative based on availability of treatments etc):
Cautious approaches, overtreatment/overdiagnosis, do no harm
If you search long and hard, you will find articles about whether to “cut or not to cut”. Not just a dilemma for NENs but also for many cancer types. During my research, I found there’s some overlap between this conundrum and the issue of “overdiagnosis”. By “overdiagnosis”, I mean the unnecessary declaration and treatment of something which would probably not harm a person whilst they live. This is a bit of a modern phenomena as diagnostic tools and screening programmes become more sophisticated and more sensitive …..something to consider with Ga68 PET scans as they are more widely used. If you search for ‘overdiagnosis’ you will see many articles, in particular (and as an example), with many Thyroid diagnoses. Worth adding at this point that many autopsies show up NETs in areas such as the appendix, pancreatic NET, Pheochromoctyoma (…..more often than you think) – check out my article The Invisible NET Patient Population. When I attended ENETS 2017 and 2018, I heard many ‘experts’ talk about conservative approaches. However, I also heard many talks about aggressive approaches.
Timing of Surgery (……to cut now, to cut later or not at all?)
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 as per WHO 2010 classification of Neuroendocrine Neoplasms onwards). We’ve all heard the stories of people being told it’s not cancer, right? Please note my article Benign vs Malignant.
Some NET guidelines suggest a cautious approach to small non-functioning pancreatic NETs (see pancreatic section below).
Of course, cutting now might actually be a pre-emptive measure (including the controversial small non-functioning pancreatic NETs). 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 (fibrosis) which had encircled my aorta and cava almost occluding the latter. The problem is still there today but with a reduced risk.
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.
Of course your tumour(s) may be inoperable or you are unable/don’t want to have surgery, therefore other treatments may need to be considered – read a summary of treatments by clicking here.
Removal of the primary in metastatic NENs
In 2019, Wiley published a paper where the data indicated that resection of the primary tumor improves survival in patients with gastro‐entero‐pancreatic neuroendocrine neoplasms with liver metastases (excludes Lung NET). This is based on an analysis of the SEER database, the largest collection of NEN related data on incidence and prevalence. Read more here. Note some old terms are used but it is based on historical data, e.g. moderately differentiated is no longer used. Note also figures appears to be a combination of well and poorly differentiated and careful interpretation of prognostic data is required.
In another published paper, there’s data to support the Wiley one above at least in SI NETs and pNETs. The paper from European Journal of Surgical Oncology (EJSO) concluded that …”Meta-analysis demonstrates that palliative resection of primary small intestine (SI-NETs) and pancreatic (pNETs) in the setting of unresectable metastatic disease can increase survival. Although these results should be interpreted with caution due to potential selection and publication bias, the data supports consideration of surgery, particularly in patients with low tumour burdens and good functional status“. It’s only an abstract (the whole data is a subscription article) but read it here.
You will also find relevant material in the pancreatic and small intestine sections below.
Pancreatic NETs remain controversial
There’s much debate in the NET specialist community about what to do with small indolent pancreatic NETs (pNETs). You may find snippets of this debate inside some of the references above but this article includes a discussion between physicians about the merits of cutting or not cutting (i.e. watch and wait). Read more here. It comes with a bonus study on pNETs highlighting one of the key problems areas and how it may be solved in the future.
Small Intestine NETs is not routine bowel surgery
Operating in the area of the small intestine is not for the inexperienced and by that I also mean knowledge of NETs and the associated complications. Read more in this post which contains input by world renowned NET experts. Click here or on the photo below. 
Surgery for Neuroendocrine Carcinoma (poorly differentiated)
Surgery for Neuroendocrine Carcinoma (poorly differentiated) is controversial but there can be certain scenarios in which it is used, and it will normally be in conjunction with adjuvant or neoadjuvant therapy. When you look at NCCN Guidelines Page PDNEC-1, only in extrapulmonary (anything outside pulmonary area) plus mainly in scenarios of resectable cases.
1. Please note well differentiated Grade 3 (high grade) is covered along with all NET guidelines.
2. Surgery for Neuroendocrine Carcinoma (i.e. poorly differentiated) is complex, readers should consult their own doctors for information.
Summary
Steve Jobs was a smart guy but did he make 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 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. Just to emphasise this is one very famous example of a case where earlier surgery may have benefited a patient but it still may not apply to you or any other patient you know.
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, MDT 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.
Disclaimer
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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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.
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.
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.
I heard this type stuff story a few times. Surgery always has risk.
Awesome information… thank you Ronnie Allen for providing us all such valuable priceless, timely information on all things NETS
Awesome information
Really appreciate the algorithm than made common sense.