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- 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
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- 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
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- 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 do it 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
- 5 years since liver surgery April 12, 2016
- Somatostatin Analogues and delivery methods in the pipeline? April 4, 2016
- US FDA Approves Telotristat Ethyl (XERMELO™) – an oral treatment for Carcinoid Syndrome March 31, 2016
- 100,000 blog views – thank you! March 21, 2016
- I’m only as good as my last scan March 21, 2016
- Dear Doctors – There’s no such thing as a ‘good’ cancer! March 17, 2016
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An Endoscopy is a procedure where the inside of your body is examined using an instrument called an endoscope. This is a long, thin, flexible tube that has a light source and camera at one end. Images of the inside of your body are relayed to a television screen. Endoscopes can be inserted into the body through a natural opening, such as the mouth and down the throat, or through the bottom. The mouth route is more accurately called a Gastroscopy and the anal route is called a Colonoscopy (or a reduced version called a Sigmoidoscopy). An endoscope can also be inserted through a small cut (incision) made in the skin when keyhole surgery is being carried out.
During a routine 6 monthly check-up at the end of 2016, I mentioned to my Oncologist that I was experiencing what appeared to be very minor heartburn and that it was an unusual symptom for me. He called forward my annual Echocardiogram and also ordered up a Gastroscopy.
I received the Gastroscopy paperwork from the hospital for an appointment on 26 Jan 2017. It offered an option for sedation, either a throat spray to numb the area or a sedative where I would probably not know what was going on. My initial thought was the latter even though it meant a longer visit to the hospital with some other constraints. It also meant I would need to check the sedation to assess the risk of NET Crisis. However, having discussed this issue with the department nurse, I was persuaded to go for the throat spray – apparently 80% of people opt for this method. I just couldn’t resist the statistical challenge! There were many advantages to selecting this option including getting rid of the sedation risk, plus I could walk out of the hospital immediately after the 5 minute procedure. The sedation option meant that I would need to remain in the hospital for an extra hour to recover, not drive for 24 hours and be supervised by an adult for 12 hours.
My blood pressure was checked prior to the procedure and systolic was around 145, 10-20 points above my normal ‘cool as a cucumber’ figure. Clearly, despite my deceptively stoic façade, something was making my heart work faster!
I was really put at ease by all 4 people in the room, two nurses, an endoscopic expert and a technician. However, the procedure itself is not what I would call a ‘breeze’. The throat spray was disgusting and said to taste of rotten bananas but personally I thought it was more like rotten fish! For the first 60 seconds (total guess) I found myself wishing I had gone for the sedation but the next minute was better after I had stopped ‘gagging’ and was now breathing fairly normally. I found swallowing easy despite the tube and a nurse was also extracting excess saliva using a similar tool used in a dental procedure. I was also aware that my eyes were watering! The natural reaction of ‘gagging’ came back at least once but only for a second or two. I would be lying if I said it wasn’t scary at the time.
The procedure seemed to be in parts, he checked the oesophagus, pumped air into my stomach for a better view, sprayed some water (not sure why), took a peek in the duodenum which required an extra swallow from me, using another tool, he took a painless routine sample from the stomach lining to test for CLO (Helicobacter Pylori – a bacterium in the lining of the stomach that can cause peptic ulcers), extracted the air, and then the extraction of the endoscope out from the gastrointestinal tract. These endoscopes really are like swiss army knives!
The best bit was the extraction! The other best bit was when he told me there were no real issues. So it was all worth it in the end! If anyone wants a copy of my comprehensive and easy to read 6 page Gastroscopy guide, let me know.
The other main type of Endoscopy is the Colonoscopy which enters the gastrointestinal tract in the opposite direction. I’ve had actually both a Gastroscopy and Colonoscopy before in 2008 before I was diagnosed. I offered the mandatory request to do the endoscopy first if using the same scope 🙂 He’d heard it before! On this occasion I was fully sedated. One minute I was talking to the Gastroenterologist, then the next thing I remember was waking up, job done. Less stressful but more time intensive. That said, the preparation for the colonoscopy is no joke. You can read about this in my blog Colonoscopy Comedy which also includes a light-hearted story about the preparation phase. If you need a laugh, this is really funny.
Although I have not had these, for completeness, I want to mention several associated procedures.
Endoscopic Ultrasound (EUS)
For patients who have, or who are suspected of having pancreatic disease, their doctor may recommend that they undergo a type of procedure called an endoscopic ultrasound, or more often known as EUS. An EUS is a type of endoscopic examination. It involves the insertion of a thin tube into the mouth and down into the stomach and the first part of the small intestine. At the tip of the tube is a small ultrasound probe that emits sound waves. These sound waves bounce off of the surrounding structures, such as the stomach, small intestine, pancreas, bile ducts, and liver. These sound waves are then recaptured by the probe and converted into black and white images that are then interpreted by your doctor. Because the pancreas sits next to the stomach and small intestine, EUS allows the physician to get very detailed images of the pancreas. This procedure is typically performed in an outpatient setting, and usually takes between 20 and 45 minutes. One of the advantages of performing an EUS is that pancreatic biopsies can be obtained at the time of the examination. These biopsies, often referred to as FNA, or fine-needle aspiration, can allow for your physician to collect tissue samples which can later be analysed under a microscope. Special needles, designed to be used with the EUS scope, allow the physician to insert a small needle through the wall of the stomach or intestine directly into the pancreas. This video explains better: Click here.
Shortly after I was diagnosed, this was mentioned as an option for me as my diagnostic scans were just showing a “mass” and it wasnt 100% clear where my primary tumour was located. It didn’t happen in the end. Capsule Endoscopy involves swallowing a small capsule (the size of the large vitamin pill). The ‘cam-pill’ contains a colour camera, battery, light source and transmitter. The camera takes two pictures every second for eight hours, transmitting images to a data recorder about the size of a portable CD player that patients wear around the waist.
Capsule endoscopy assists in diagnosing gastrointestinal conditions in the small bowel such as: bleeding, malabsorption, chronic abdominal pain, and chronic diarrhoea. Once swallowed the camera moves naturally through the digestive tract. Approximately eight hours after ingesting the camera, patients return to the Endoscopy Unit where the recording device is removed by the nurse, the images are downloaded to a computer and evaluated. The Capsule is disposable and will be passed naturally in the bowel movement.
A flexible sigmoidoscopy is a procedure that is used to look inside the rectum (back passage) and lower part of your large bowel (descending colon) and so is like an abbreviated version of a colonoscopy.
Bronchoscopy is a procedure that allows the doctor to examine your trachea (windpipe), bronchi (branches of the airway) and some areas of the lung. A short thin flexible tube with a mini camera built into its tip, called a ‘bronchoscope’, is used for this procedure. The bronchoscope is usually passed through your mouth or nose, into your trachea and bronchi. The doctor can then get a clear view of your airways. During the procedure, the doctor may take samples of tissue (biopsy) or respiratory secretions for examination. Bronchoscopies can also be used for ablation purposes. You may be interested in this award-winning biopsy and ablation service offered by the Royal Free Hospital in London UK – Innovation at Royal Free – Lung Biopsy and Radio Frequency Ablation Service
Thanks for reading about how physicians can take the camera directly to the sites of suspected tumours!
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OK – we’ve gone through diagnosis, we’ve gone through treatment and now we need to live with the consequences of cancer and it’s treatment. Not a day goes by when I don’t feel some twinge or some minor pain and I think ‘what was that?‘. Fortunately, many things can just be day-to-day niggles. It’s the cancer …. easy to say, sometimes not easy to prove. However, for Neuroendocrine Tumour (NET) patients who have had surgery, anything that seems like a bowel obstruction is quite a scary thought (I suspect this is also an issue for other cancer types). In fact, even before diagnosis, a bowel obstruction rears its head as it can be how the condition is diagnosed in the first place, i.e. pain leads to more pain and that can sometimes result in a visit to the ER/A&E which can very often lead to a scan and an incidental diagnosis of NETs (and I suspect some other cancers).
I guess this isn’t just a threat for those who’ve had intestinal NETs but others in the vicinity of the intestines could also have this issue – the abdominal cavity is full of organs all very closely packed together! Both the small intestine and the large intestine can become blocked and if it can’t be unblocked by non-surgical means, it can become a bit of a drama for the patient. Blockages can be full or partial so it can often be a tough call for the medical team due to the effects of the patient’s existing surgery including but not limited to previous surgical scarring (adhesions) and the impacts of the blockage surgery on the patient’s future quality of life. Clearing the blockage by non-surgical means is the optimum solution. The presentational symptoms and scans can give immediate clues. Although there are slightly different symptoms for large and small intestine (bowel) obstructions, the key symptoms of a blockage would appear to be:
Feeling bloated and full
Severe abdominal pain
Vomiting large amounts
Looking at some authoritative sites, the logical (and fairly obvious) decision steps seem to be:
Is there an obstruction or is the problem something else?
If an obstruction, where exactly is it?
What is causing the obstruction?
Are there any complications such as adhesions, twisted loops or hernias
In 2016, I had 3 bouts of constipation and I confess that a potential blockage did cross my mind on all 3 occasions. However, I was comforted by the fact that I had no nausea and/or vomiting which I suspect is one of the key symptoms indicating a blockage rather than just a sluggish system. Fortunately, on all 3 occasions, the matter settled following a few days of right-sided pain (RLQ). One occasion required lactulose but all three required patience sprinkled with a pinch of endurance! I have to say the lactulose experience was not a good one – fatigue, brain fog and general malaise …..but much better than surgery.
I’m once again making some adjustments to try to find the magic spot between stool frequency and bulk….. it’s really difficult and not an exact science. I’m suspecting diverticular disease might be playing some part as I was diagnosed with a mild version in 2008 spotted during a colonoscopy (a common problem when you’re over 50). Although that tends to be a left-sided problem, I remain conscious that my ‘new plumbing’ may not be the best representation of a conventional layout!
NET Patient Foundation are really good at producing cards and there’s one for this too!
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What is Cabozantinib?
Cabozantinib is an oral drug which works by blocking the growth of new blood vessels that feed a tumour. In addition to blocking the formation of new blood cells in tumours, Cabozantinib also blocks pathways that may be responsible for allowing cancers cells to become resistant to other “anti-angiogenic” drugs. It is a type of drug called a growth blocker. Cabozantinib has been studied or is already in research studies as a possible treatment for various types of cancer, including prostate cancer, ovarian cancer, brain cancer, thyroid cancer, lung cancer, and kidney cancer. During my research, I found that it has a connection to Medullary Thyroid Cancer (MTC) which is a type of Neuroendocrine Cancer, frequently associated with Multiple Endocrine Neoplasia (MEN). Cabozantinib, under the brand name of ‘Cometriq’ was approved by the FDA in 2012 for use in MTC. Read more about Cometriq here. It’s also been approved by the FDA for advanced renal cell carcinoma (RCC) (branded as Cabometyx). I also discovered that there is an exclusive licensing Agreement with the manufacturers (Elelixis) and Ipsen (of Lanreotide fame) to commercialize and develop Cabozantinib in regions outside the United States, Canada and Japan
So Capozantinib is a tyrosine kinase inhibitor and is therefore a biological therapy and growth blocker just like Everolimus (Afinitor) and Sunitinib (Sutent). Very technical process but in the simplest of terms, Cabozantinib is deigned to disrupt the actions of VEGF (a growth factor) and MET (a growth factor receptor) which promote spread of cancerous cells through the growth of new blood vessels. Whilst we are on this subject, please note Everolimus (Afinitor) is an mTOR inhibitor and Sunitinib (Sutent) is a tyrosine kinase inhibitor. Many people think these drugs are a type of chemo – that is incorrect, these are targeted biological therapies. See more on this by clicking here.
What is the current trial status of Capozantinib?
It’s currently in an ‘Open-Label’ ongoing Phase II Study but is not currently recruiting participants. According to the documentation below, a Phase III trial is in development. The results of the Phase II trial have been presented to both European and US conferences. The trial is confined to Massachusetts in the US in two Boston hospitals (Massachusetts General and Dana-Farber). Dr Jennifer Chan is involved with input from Dr Matthew Kulke – both known NET specialists. The primary study competed in Dec 2016 with a projected study end date of December 2018. According to the trial documentation and informed comment on the trial data to date, the drug targets both Pancreatic Neuroendocrine Tumours (pNETs) and Carcinoid types (e.g. small intestine, appendix, lung, rectum and others). However, these tumours are described as “locally unresectable or metastatic, histologically-confirmed, carcinoid or pancreatic neuroendocrine tumor. Tumors must be considered well- or moderately differentiated (Grade 1 or 2). Patients with poorly differentiated neuroendocrine carcinoma or cell carcinoma are excluded from the study”.
You can read the trial documentation by clicking here.
You can read the output from the poster submission for 2017 Gastrointestinal Cancer Symposium and the output from Onc Live.
- Poster submission for 2017 Gastrointestinal Cancer Symposium
- Onc Live output from the 2017 Gastrointestinal Cancer Symposium
I generated this blog to add value rather than just post the outputs for your own perusal. I hope you find it useful.
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Here’s some extracts from the CEO of Advanced Accelerator Applications 2016 Progress Report published on 9 Jan 2017. I’ve added additional comment where necessary to provide a richer picture. There is some really useful information, particularly for those looking for updates on PRRT (Lutathera®). I found the content very positive and let me say that the header to the report was entitled “….Asserts Confidence in Ability to Address FDA Comments on Lutathera® NDA“. The original projected approval date for Lutathera® (PRRT) was by 28 Dec 2016 but to the best of my knowledge, no new date has been published and none was listed in this progress report.
Ga68 PET NETSPOT®
“In June 2016, after just 23 months from our pre-Investigational New Drug meeting with the U.S. Food and Drug Administration (FDA), our first U.S. product, NETSPOT®, a gallium Ga 68 dotatate PET diagnostic for neuroendocrine tumors (NETs), was approved. In addition, we also recently announced approval of SomaKit TOC™ by the European Commission. The response of the U.S. NET patient and physician community to our NETSPOT® launch has been very positive. We are currently delivering more than 120 patient-ready doses of NETSPOT® per month, with the help of our national network of radiopharmacy partners. We have 13 radiopharmacies currently active and plan to expand to more than 40 sites over the first half of 2017. We are further encouraged by the granting of Transitional Pass-Through status by the Centers for Medicare & Medicaid Services (CMS) under an “A Code” for drug reimbursement. The same Healthcare Common Procedure Coding System “A Code” will be used on claims to private payers. This coding streamlines billing and reimbursement for all institutions using the product. (I published more – click here). We look forward to bringing the same enhanced patient management and convenience of a kit form to the European market with the launch of SomaKit TOC™ in 2017.”
“We are working closely with both the FDA and the European Medicines Agency (EMA) to address requests related to the review of our New Drug Application (NDA) and Marketing Authorization Application (MAA) for Lutathera®. As we announced in September, the EMA had requested some additional clarifications and an inspection of one of our contract research organizations (CRO), which modified the anticipated review to a standard timeline. I am pleased to share that the majority of these clarifications have since been provided, and the inspection of the CRO has been completed. I am also quite pleased to inform you that our team is already deeply engaged in the issues identified by the FDA in its recent communications regarding format, traceability, uniformity, and completeness of the NETTER-1 and Erasmus clinical datasets. To remediate these issues, we have formed an internal task force to work closely with an additional CRO and consulting statistician we hired that specialize in the exact areas highlighted by the FDA. In September, we added a Head of Oncology in the U.S., who is already contributing enormously to this effort, and we are further strengthening our internal statistical capabilities, as well. It is our absolute focus and priority to deliver revised datasets meeting the FDA’s requirements as soon as possible. The FDA also requested some additional subgroup analyses and safety updates, as well as other stratification factors. Our team is in the process of addressing these requests. I would like to reiterate that no additional clinical studies have been requested by the FDA, and aside from some open observations from facilities inspections, to date, the FDA has not made any comments on other sections of our NDA. We remain steadfast in our efforts to resolve all of these outstanding issues as soon as possible. I published the latest Phase 3 results of the NETTER-1 trial – click here.
As the review process for Lutathera® moves forward, we are increasing our U.S. Expanded Access Program (EAP), in an effort to service the more urgent needs of NET patients. The EAP was opened in March 2016, and the first patient received the product in July. There are currently 14 sites across the U.S. participating in the EAP for Lutathera® in Arizona, California, Colorado, Iowa, Massachusetts, Missouri, New York, North Carolina, Pennsylvania, and South Carolina. Additional sites are expected to enrol in 2017. European compassionate use and named patient programs for Lutathera® already span 67 centers across 10 countries: Austria, Denmark, Estonia, Finland, France, Greece, Portugal, Spain, Switzerland, and the United Kingdom. More than 1,500 patients worldwide have been treated with Lutathera® through these programs.”
“Our enhanced supply chain and manufacturing capabilities will further support this activity and prepare us for Lutathera’s® launch. Our acquisition of IDB Group in the Netherlands, in January 2016, provided AAA with a reliable supply of Lutetium 177 for the production of Lutathera®, as well as production capabilities for other future product candidates. Additionally, our first U.S. manufacturing and distribution facility in Millburn, NJ was completed this summer. This site currently distributes NETSPOT® kits for reconstitution and Oxygen-18 enriched water, and is undergoing validation for production of Lutathera®. The Millburn site is expected to supply Lutathera® to the entire North American market.”
Other applications in the pipeline
“In July 2016, we signed a clinical trial agreement with the National Cancer Institute (NCI), whereby NCI will sponsor and conduct a study of Lutathera® in patients with inoperable pheochromocytoma and paraganglioma. In a Phase II trial conducted at the Erasmus Medical Center, that is part of our NDA and MAA, 45 patients with these indications were treated with a median Progression Free Survival of 24.8 months and a median Overall Survival that was not reached. We hope these results will be confirmed by the NCI trial. There are six additional investigator initiated studies currently ongoing with Lutathera® in indications such as primary refractory or relapsed high risk neuroblastoma; FDG-positive and negative gastroenteropancreatic , or GEP-NETs; and unresectable, progressive, well-differentiated neuroendocrine pancreatic carcinoma, with more planned in 2017.”
“As we enter 2017, we believe AAA is well positioned to achieve our goals. We have the infrastructure and capabilities to build on our success with NETSPOT®, and implement product launches for SomaKit TOC™ and then Lutathera®. We are increasing market penetration in both the U.S. and Europe. We continue to generate positive clinical data for Lutathera® and have a robust development pipeline. We are well capitalized to execute our strategy and secure our leadership as a key innovator in the Molecular Nuclear Medicine segment. I thank our stakeholders for their continued support, and look forward to providing updates on our progress with the FDA’s requests.”
End of extract ——————————-
I hope this extract of the Neuroendocrine Cancer aspects of the report is useful. However, if you wish, you can read the whole report here. I look forward to informing you that the US FDA has approved PRRT (Lutathera®).
If you want to read a history of PRRT, please see the excellent series published by Carcinoid Cancer Foundation entitled Lutathera® – The Journey from Homegrown Therapy to Registered* Pharmaceutical Treatment for NETs
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A fairly common disposition of metastatic Neuroendocrine Tumours (NETs) is a primary with associated local/regional secondary’s (e.g. lymph nodes, mesentery and others) with liver metastases. Technically speaking, the liver is distant. However, many metastatic patients have additional and odd appearances in even more distant places, including (but not limited to) the extremities and the head & neck. In certain NETs, these might be an additional primary (e.g. in the case of Multiple Endocrine Neoplasia (MEN); or they could even be a totally different cancer. The worry with NETs is that the ‘little suckers‘ are known to make these surprise appearances given that neuroendocrine cells are everywhere!
Cancer doesn’t just spread through the blood steam, it can also spread through the lymphatic system. This is a system of thin tubes (vessels) and lymph nodes that run throughout the body in the same way blood vessels do. The lymph system is an important part of our immune system as it plays a role in fighting bacteria and other infections; and destroying old or abnormal cells, such as cancer cells. The lymphatic system also contains organs, some of which feature regularly in NETs. If cancer cells go into the small lymph vessels close to the primary tumour they can be carried into nearby lymph glands. The cancer cells may get stuck there. In the lymph glands they may be destroyed but some may survive and grow to form tumours in one or more lymph nodes.
I’ve known since shortly after diagnosis that I had hotspots in my left ‘axillary’ lymph nodes (armpit) and my left ‘supraclavicular fossa’ (SCF) lymph nodes (clavicle). These were found on Octreoscan but were not pathologically enlarged – just ‘lighting up’. I also had the usual bulky chains of lymph node metastases in or around the mesentery that frequently appear with an abdominal primary (in my case the small intestine).
In early 2012, 15 months after removal of primary and 10 months after liver resection, one of the axillary lymph nodes became palpable (signs of growth) and this coincided with a small spike in Chromogranin A. A total of 9 nodes were removed very shortly after this surveillance, 5 of which tested positive for NETs (Ki-67 <5%). As part of the same operation, 5 SCF left clavicle nodes were removed but tested negative. On a subsequent Octreoscan, the armpit was clear but the clavicle area still lit up. However, there is no pathological enlargement or pain – so this is just monitored.
I have a 3mm lung nodule, discovered in 2011. Apparently, lung nodules are a pretty common incidental finding with 1 per 500 X-rays and 1 per 100 CT scans finding them. This is monitored.
I have a 19mm thyroid lesion which was pointed out to me in 2013. This has been biopsied with inconclusive results. Although the thyroid is an endocrine gland, it looks like a non-NET problem so far. I attend an annual Endocrine MDT where this is monitored with close coordination with the NET MDT. Thyroid nodules are in fact very common and statistically, 50-70% of all 50-70 year olds will have at least one nodule present (i.e. if you are in your 50s, there is a 50% chance you will have one nodule and so on). The vast majority will never bother a person while they live.
Last week (3 Jan 2017), during my Endocrine MDT, a surveillance ultrasound spotted a slightly enlarged lymph node on the right side (measuring 9mm x 9mm) described as a ‘level 4’ node (a location indicator meaning the ‘lower jugular group’). The report has been passed to the NET MDT for their consideration but the surgical rep on the Endocrine MDT is currently recommending a conservative approach. I suspect he’s right, it’s still below the worry threshold, nothing is palpable (no lumps) and I don’t have any specific symptoms. There could be a number of reasons for the enlargement and it might even be back to normal size on my next scan. Hopefully just a nonsense. All my issues have been left-sided to date, so this is interesting. That said, I did have an MRI last year to investigate pain and a swelling at the site of my right ‘sternoclavicular’ joint – subsequently declared a nonsense.
I’m due to see my Oncologist in 7 weeks when I’m sure it will be discussed.
Nonsenses, always a worry!
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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) and I rather like those!
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):
If you search long and hard, you will find articles about whether to “cut or not to cut” which is not just a dilemma for NETs 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. I read a recent article about Rectal cancer where the author suggested a ‘wait and see’ approach might be better for most. Worth adding at this point that many autopsies show up NETs in areas such as the appendix (…..more often than you think) – check out my blog “Benign vs Malignant“.
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 tumour behaviour (i.e. they all have malignant potential – WHO 2010). 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 that the cancer had spread to his liver.
This is a difficult subject and no one size fits all. 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.
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One of the very first words I heard at diagnosis was the word “Mesentery“. In the news today is the announcement that is now might just be a new organ following accepted findings from research conducted in the University of Limerick Ireland. I always knew it was something which held the small and large intestines in place within the abdomen so like many others, I just thought it was some kind of membrane type structure and I also knew there was some kind of interaction with the peritoneum, another word which I was to become familiar with.
This is an important area for NET patients as many will have mesenteric involvement in their disease. I’ve read reports of a primary mesenteric tumour although it’s mainly a site for secondary disease (metastasis). It’s no surprise when you consider the geography – the small and large intestines are inextricably linked to this new organ. There is pancreatic involvement too. The mesentery contains many lymph nodes (the main place for metastasis for small intestinal NETs and other types) and has important blood vessels adding complexity to surgery. It’s also a place where there’s likely to be fibrotic reactions (desmoplasia) from the excess release of serotonin which can also complicate surgery.
When I check my own records, I can see statements such as “mesenteric disease”, “bulky mesenteric nodes”, “further nodal disease situated on the superior mesenteric artery and vein” and “dense retroperitoneal reaction encircling his aorta and cava from just below the level of the superior mesenteric artery”. When I also look at the post surgical reports, I can see that I had something called a “mesenteric root dissection” which needed a “superior mesenteric vein reconstruction”.
So there you have it, the anatomic description that had been laid down over 100 years of anatomy was incorrect. This organ is far from fragmented and complex. It is simply one continuous structure. According to the article I read, medical students started being taught that the mesentery is a distinct organ and the world’s best-known series of medical textbooks, Gray’s Anatomy, has even been updated to include the new definition. Finally, so what you might be thinking? Here’s a quote from the person who led the work:
“The next step is the function,” Coffey explained. “If you understand the function you can identify abnormal function, and then you have disease. Put them all together and you have the field of mesenteric science … the basis for a whole new area of science.”
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