Tag: Surgery

A procedure to remove or repair a part of the body or to find out whether disease is present. An operation.

04 Oct 2023

7 Comments

My right-hand woman – Chris

My right-hand woman – Chris

Inspiration, Living with Neuroendocrine Cancer, Survivorship, Travel with RonnyNeuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Surgery

There's been a lot in my blog about cancer, the cancer patient and the medical teams. However, we sometimes forget to mention the close family and friends who are also a piece of the cancer jigsaw. Without these people, it's possible the patient would potentially have a much poorer quality of life. I've had tremendous support from my immediate family and many of my friends. Some of my closest friends have almost been functioning as counsellors. I'm in a much better place than I was in 2010-2014 but I have a lot of people to thank for some excellent progress.…

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03 Oct 2023

1 Comment

Who needs a gallbladder anyway?

Who needs a gallbladder anyway?

Diet and Nutrition, TreatmentBile, Bile acid diarrhea, Bile acid malabsorption, Bile acid sequestrant, Bile duct, Bile salt, Gallbladder, Neuroendocrine tumour (NET), Small intestine NET (SI NET), Surgery

We can survive without a gallbladder, but clearly it is a useful, functioning organ, and we are better off to keep it if we can. There are times when things can go wrong such as gallstones, sludge and blocked ducts, and then it may need to be removed. However……even though there wasn’t really anything wrong with my gallbladder in 2010/2011, I was convinced it had to go.For info, gallstones incidence in the general population makes it considerably more common than NETs so it follows that some NET patients will have a gallstone issue totally unrelated to their NET. Gallstones are…

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29 Sep 2023

3 Comments

Never mind the Bollocks – here’s the cancer

Never mind the Bollocks – here’s the cancer

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, TreatmentDiagnosis, Fine needle aspiration (FNA), Hydrocele, Hydrocelectomy, Neuroendocrine cancer, Retroperitoneal Fibrosis, Surgery, Testicular cancer

I don't tend to share some very personal stuff, but this is on the boundary of that rule and there are some important messages to be teased out. For those who follow my blog in detail, you may remember the post entitled "Neuroendocrine Cancer - Signs, Suspicions, Symptoms, Syndromes, Side-Effects, Secondary Illnesses, Comorbidities, and Coincidences" (now named "a difficult jigsaw)As you can see from the title above, I got hooked on a bunch of 'synonyms' that represent the difficulty in sorting out what can be attributed to Neuroendocrine Tumours (NETs) and what might be something else. You'll note they all begin…

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06 Sep 2023

17 Comments

Cancer doesn’t take holidays (but I do)

Cancer doesn’t take holidays (but I do)

Inspiration, Living with Neuroendocrine CancerLanreotide, Neuroendocrine cancer, Quality of LIfe (QoL), Side effect, Surgery

Glen Etive Scotland in 2018 After diagnosis in July 2010, with the exception of a planned holiday to Turkey prior to my 'big surgery', holidays were put on the back burner, there were too many problems and too many risks - not least of which was the lack of overseas insurance cover for my condition. After 2 years of treatment including several surgeries, I was feeling more confident and my body had become stronger, holidays were put back on the agenda, but nothing too strenuous, nothing too far away. We stuck to Europe over the period 2012-2014. However, in 2015,…

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05 Sep 2023

10 Comments

Update from Ronny Allan: No evidence of progressive disease at any site

Update from Ronny Allan: No evidence of progressive disease at any site

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipDiet, Malabsorption, Neuroendocrine cancer, Nutrition, Probiotic, Quality of LIfe (QoL), Side effect, Supplements, Surgery

Update August 2023. Latest CT surveillance scan reports “No evidence of progressive disease at any site".Very pleased!With incurable but treatable cancers such as metastatic Neuroendocrine Cancer, 'Stable' is normally not the end of the matter, for many there is still a long road ahead and that road may not be straight or flat. The long road may be considered an advantage by some given that with very aggressive cancers, incurable can frequently mean terminal. The surveillance must continue in case of a recurrence.It's important to understand that 'Stable' simply means the disease is "under control" with tests and scans showing…

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30 Aug 2023

16 Comments

Is your glass half empty or half full?

Is your glass half empty or half full?

Inspiration, Living with Neuroendocrine CancerAdvanced neuroendocrine cancer, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Quality of LIfe (QoL), Surgery

Most people have probably heard of the saying "is your glass half empty or half full". If you said 'half empty', you have more of a pessimistic view on life; if you said 'half full', you tend to have more of an optimistic or positive outlook. I don't think a positive outlook actually means you permanently wear 'rose tinted glasses' and act like everything is fine. I think it just means you approach potentially negative situations in a more positive and productive way. I agree that sometimes it’s hard not to veer into negative thoughts or actions from time to…

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05 Aug 2023

3 Comments

Still here, just reshaped

Still here, just reshaped

InspirationDebulking surgery, Diagnosis, Small intestine NET (SI NET), Surgery

The tallest tree in Wales had been damaged by a storm and was supposed to be cut down, but chainsaw artist Simon O'Rourke - Tree Carving found a better solution to symbolize the tree's last attempt to reach the sky. I suspect you could also call Simon a tree surgeon. I was reshaped too! In one of my diagnostic stories, I said that my body was slowly dying and that was just how it felt having been diagnosed with something that had not made some grand announcement. It slowly just crept into my life, occasionally giving small clues that it…

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23 Jul 2023

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A tumour-finding probe improves the ‘effectiveness of surgery in Gastrointestinal neuroendocrine tumours

A tumour-finding probe improves the ‘effectiveness of surgery in Gastrointestinal neuroendocrine tumours

Clinical Trials and Research, Patient Advocacy, TreatmentBowel surgery, Curative surgery, Debulking surgery, Gastrointestinal NET (GI-NET), Laparoscopic surgery, Small intestine NET (SI NET), Surgery

A major challenge that cancer surgeons face currently is that there are no reliable methods to identify the tissue type during surgery (other than fast tracking tissue sampling). The surgical procedures, therefore, rely extensively on the experience and judgment of the surgeon to decide on how much tissue to remove around the tumor margins. Sometimes this can result in the removal of excessive healthy tissue. On the other hand, not removing some tumour cells can often need a follow-up surgery to remove residual cancer tissue. This just adds to patient morbidity and long-term detrimental effects on the patient’s outcome. The use…

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08 Jan 2023

2 Comments

EUS Guided Ablation for small pancreatic NETs (Less than 2cm)

EUS Guided Ablation for small pancreatic NETs (Less than 2cm)

Clinical Trials and Research, Patient AdvocacyAblation, Endoscopic ultrasound (EUS), Pancreatic NET (PanNET), Surgery

To burn or not to burn? I once wrote a post about Pancreatic NET "to cut or not to cut". You can read that here. Surgery for small pancreatic NETs remains controversial with most guidelines and study guidelines recommending surveillance for small primary tumours less than 2cm. There are exceptions to that, e.g. preventative surgery if the tumour is threatening important vessels and for functional cases where the surgery is palliative in nature. Contrast that against some patient perspectives where they just want it cut out (and some will 'surgeon-shop' until they find someone who will). Most pancreatic NET are…

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03 Jan 2023

2 Comments

RonnyAllan.NET – a review of 2022

RonnyAllan.NET – a review of 2022

Awareness, Clinical Trials and Research, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with Ronny, TreatmentAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Clinical trial, COVID-19, Diagnosis, Diet, Ga68 PET/CT, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Hormones, Incurable cancer, Lanreotide, Lung NETs, Lutathera, Malabsorption, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Nutrition, Octreotide, Peptide receptor radionuclide therapy (PRRT), Quality of LIfe (QoL), Serotonin, Small intestine NET (SI NET), Somatostatin analogues, Somatostatin receptors (SSTR), Surgery

Review In 2022, my pet project (my blog) hit 2 million views in early November – that was a major boost. It takes 3-4 years to get a million hits based on current performance. To be honest, I’m still flabbergasted by reaching one million in 2018. It just kinda happened! I am grateful for every single view. 2022 was a challenging year, mainly because the pandemic had some latent impact on my social media activity and also in terms of growth. 2020 and 2021 were slower than normal but 2022 has seen some pickup. Some of it is due to less writing…

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23 Nov 2022

6 Comments

My tribute to Wilko Johnson #NeuroendocrineCancer – Rock and Roll Wilko!

My tribute to Wilko Johnson #NeuroendocrineCancer – Rock and Roll Wilko!

Awareness, Inspiration, Living with Neuroendocrine CancerMisdiagnosis, Neuroendocrine cancer, Pancreatic cancer, Surgery

BREAKING NEWS I recently blogged about a well-known BBC political reporter who has Neuroendocrine Cancer with a Lung Primary. However, in the usual media 'double speak' which can sometimes pervade the coverage of such events, he is said to have Lung Cancer. As I said in that article, sometimes with Neuroendocrine Cancer - the devil is in the detail and you just need to dig to find it. Annoying, we shouldn't need to dig as he doesn't have Lung Cancer. I wrote about this anatomical issue here. This is exactly what happened to Steve Jobs and Aretha Franklin. No sooner…

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01 Sep 2022

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Management of asymptomatic sporadic non-functioning pancreatic neuroendocrine neoplasms no larger than 2 cm: interim analysis of prospective ASPEN trial

Management of asymptomatic sporadic non-functioning pancreatic neuroendocrine neoplasms no larger than 2 cm: interim analysis of prospective ASPEN trial

Clinical Trials and Research, TreatmentNeuroendocrine tumour (NET), Pancreatic NET (PanNET), Surgery

One of the most controversial subjects in Neuroendocrine Neoplasms is the management of small non-functional (asymptomatic) pancreatic NETs (NF-PanNEN). In the most general terms, surgery is not recommended in tumours less than 2cm. Allowances are made for those who are functional (i.e. symptomatic with one of several syndrome possibilities) or where the tumour is threatening important vessels (i.e. pre-emptive surgery). Normally watching and waiting is recommended. I wrote more detail in an earlier blog - Pancreatic Neuroendocrine Tumours - to cut or not to cut Some patients opt (or push for) a non-guideline surgery regardless and as one other patient…

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08 Apr 2022

1 Comment

My illness may be invisible, but I am not

My illness may be invisible, but I am not

Awareness, Living with Neuroendocrine Cancer, SurvivorshipAdvanced neuroendocrine cancer, Cancer surveillance, Cancer survivor, Carcinoid syndrome, Diabetes, Hypothyroidism, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Surgery

The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer. Many Neuroendocrine Cancer patients look outwardly healthy, and this can often lead to a lack of appreciation of the potential dangers lurking in their life, the person's actual capabilities, and how they cope with their condition. I am sure those reading who have a Neuroendocrine Cancer diagnosis will find something similar to their own experiences. Growing invisibly inside me for years…

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07 Mar 2022

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Clinical Trial: Testing the Use of Chemotherapy After Surgery for High-Risk Pancreatic Neuroendocrine Tumors

Clinical Trial: Testing the Use of Chemotherapy After Surgery for High-Risk Pancreatic Neuroendocrine Tumors

Clinical Trials and Research, TreatmentCAPecitabine TEMozolomide (CAPTEM)., CAPTEM, Chemotherapy, NETest, Pancreatic NET (PanNET), Surgery

An interesting trial centred on SW USA. The use of CAPTEM following surgery in high-risk pancreatic NETs (G2/G3 well-differentiated). Also includes the use of NETest at 3 time points, which is very interesting considering the recent withdrawal of Chromogranin A from US NET Guidelines. (Read about NETest here). Randomized Phase II Trial of Postoperative Adjuvant Capecitabine and Temozolomide versus Observation in High-Risk Pancreatic Neuroendocrine Tumors (S2104) is a recently activated National Clinical Trials Network randomized phase II trial designed to compare CAPTEM chemotherapy versus observation following resection of pNETs (see Figure 2). Patients with well-differentiated grade 2 or 3 (Ki-67 up…

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20 Nov 2021

2 Comments

20th November 2010 – feeling perkier

20th November 2010 – feeling perkier

Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Bowel surgery, Carcinoid syndrome, Desmoplasia, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Retroperitoneal Fibrosis, Right hemicolectomy, Small intestine NET (SI NET), Surgery

Every year I cast my mind back to this time in 2010. Diagnosed on 26th July that year, I was in hospital from 8th - 26th November, an extended period due to complications. At that point, I had been keeping my diagnosis within close family and friends and my manager at work. People at work and my wider list of friends were probably wondering what was going on with me. Cleary, I let my emotions slip by posting this on my personal Facebook profile on 20th November 2010. Perhaps this was my way of opening up. To be honest, the first…

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07 Mar 2021

0 Comments

Treatment for Neuroendocrine Cancer – a summary for patients

Treatment for Neuroendocrine Cancer – a summary for patients

Treatment5-Fluorouracil (5-FU), Atezolizumab (Tecentriq), Avelumab (Bavencio), Capecitabine (Xeloda), CAPecitabine TEMozolomide (CAPTEM)., Chemotherapy, Cisplatin, Cisplatin/Etoposide, Cryoablation, Cyberknife, Etoposide, External beam radiotherapy, FOLFIRI, FOLFOX, Gamma knife, Interferon alpha (IFNα), Irinotecan (Campto), Irreversible electroporation (IRE), Lanreotide, Liver directed therapy, Lu-177, Lutathera, NanoKnife®, Nivolumab (Opdivo), Octreotide (Octreotide acetate), Opdivo (Nivolumab), Paclitaxel (Taxol), Pembrolizumab (Keytruda), Peptide receptor radionuclide therapy (PRRT), Proton beam therapy, Radiation therapy, Somatostatin analogues, Somatostatin receptors (SSTR), Somatuline Autogel (US: depot), Stereotactic body radiotherapy (SBRT), Stereotactic radiosurgery (SRS), Streptozotocin (Zanosar), Surgery, Targeted therapy, Temozolomide (Temodal), Thorson-Bioerck syndrome, Tumour mutational burden (TMB), Vepesid), Watchful waiting

1. Scope This summary provides an overview of the types of therapy known for treating Neuroendocrine Cancer. They will have been approved at least by one national or regional approval agency, may not be available or approved in your own country; and may appear in clinical guidelines for the treatment of Neuroendocrine Cancer. Clinical trials will not be covered, although it's noted that some of the approved treatments listed may be in follow on trials either to prove new coverage or used in combination with another drug. For a list of clinical trials covered by the author, click here.…

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18 Jul 2019

5 Comments

Pancreatic Neuroendocrine Tumours – to cut or not to cut

Pancreatic Neuroendocrine Tumours – to cut or not to cut

TreatmentAdvanced neuroendocrine cancer, ATRX, DAXX, Liquid biopsy, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pancreatic adenocarcinoma, Pancreatic cancer, Pancreatic NET (PanNET), pNET, Quality of LIfe (QoL), Surgery

Background I've written before about pancreatic NETs (pNETs), much of which has been on the awareness side of my advocacy work, particularly emphasising the differences with core Pancreatic Cancer (adenocarcinoma).Pancreatic NETs are quite difficult to diagnose and treat, some of that difficulty is due to the location of the pancreas and accessibility for surgeons and radiographers. It's not helped by the fact that most pNETs are non-functional, making diagnosis more difficult as there is little clinical suspicion to scan, but also results in more late diagnoses.Although biopsies are possible, mainly via endoscopic ultrasound or laparoscopy, they can still be difficult to…

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21 Nov 2018

10 Comments

Neuroendocrine Cancer – is normally slow growing BUT …..

Neuroendocrine Cancer – is normally slow growing BUT …..

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Cancer surveillance, Cancer survivor, Carcinoid syndrome, Diabetes, Hypothyroidism, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Surgery

I have a lot to be thankful for The points below are awareness and should not be confused with pity parties (I don't do those) No thanks for growing inside me for years before making your vague announcement Sorry too late, I'm metastatic and around 50% of patients will be at diagnosis (so I'm not alone!). It's very SNEAKY! No thanks for making a right mess inside my body! I mean, I look really good, I look really well, but you should see my INSIDES No thanks for generating fibrosis throughout my mesentery and retroperitoneum! I really didn’t know what…

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03 Feb 2018

5 Comments

Neuroendocrine Cancer Clinical Trial: Advanced Oncology Formula enterade®

Neuroendocrine Cancer Clinical Trial: Advanced Oncology Formula enterade®

Clinical Trials and Research, Diet and Nutrition, TreatmentAmino acids, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, Diarrhea, Enterade® advanced oncology formula, Hormones, Malabsorption, Medical food, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Quality of LIfe (QoL), Radiotherapy, Surgery

Diarrhea is a huge subject for NET patients, whether it's caused by the tumour itself (i.e. a syndrome), due to treatment, knock on effects of treatment, or some other reason, it can dramatically limit qualify of life. Working out the root cause can be problematic even for medical teams. I wrote about these issues before in my article Neuroendocrine Cancer - the diarrhea jigsaw. So when I saw the data from a trial of something called enterade®, I was immediately drawn to investigate. I don't normally write articles on over the counter commercial products but this one is an exception…

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20 Dec 2017

5 Comments

Neuroendocrine Cancer – surveillance and follow up

Neuroendocrine Cancer – surveillance and follow up

Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipBiopsy, Grade, Hormones, Malabsorption, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Surgery, Surveillance, Thyroid, Tumour marker, Vitamin B12, Vitamin D

Since 2010 I've had a lot of surveillance and testing. More than people can imagine. I can see from various comments on my public pages and posts within my private group, that some people get a lot more than me and I get more than others. It's not true to say we all get the same, there are many factors including stage, grade, type of Neuroendocrine Neoplasm, healthcare system/guidelines, miscellaneous problems, therapy, and even age.In the first year or two after diagnosis, I seemed to be in a continuous testing phase but that was mainly due to seeing so many…

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12 Dec 2017

3 Comments

Update: Management of Neuroendocrine Tumors

Update: Management of Neuroendocrine Tumors

Awareness, Living with Neuroendocrine Cancer, TreatmentAdvanced neuroendocrine cancer, Afinitor, Carcinoid heart disease, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, Diarrhea, Everolimus, Flushing, Hormones, Incurable cancer, Lanreotide, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Octreotide, PRRT, Quality of LIfe (QoL), Somatostatin analogues, Surgery, Telotristat ethyl (Xermelo), Xermelo (Telotristat ethyl)

This is an excellent and positive video based overview of where we are with the Management of NETs. This is a presentation from a NET Specialist (who some of you may know) presenting to a "GI Malignancies" conference. This is therefore not only awareness of NETs, it's also some good education for non NET GI experts who may only know the very basics. Useful for patients too! I met Dr Strosberg in Barcelona (ENETS 2017) and thanked him for his presentational and scientific paper output which I often use in my articles. The classification picture is good as it explains…

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16 Oct 2017

2 Comments

Opinion: Neuroendocrine Cancer – Can it be cured?

Opinion: Neuroendocrine Cancer – Can it be cured?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Biological therapy, Carcinoid tumour, Chemotherapy, Cure, Full remission, Hormones, Incurable cancer, Lanreotide, Liver directed therapy, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), No evidence of disease (NED), Oncolytic virus, Palliative treatment, Partial remission, Quality of LIfe (QoL), Somatostatin analogues, Surgery

OPINION: "Cured" - In cancer, this word can evoke a number of emotions. Interestingly, not all these emotions will be as positive as you might think. If you want to spark a heated debate on a Neuroendocrine Cancer patient forum, just mention that you've been cured. I'm not taking any sides by using this statement, just stating what actually happens and the deeply held views that persist in community groups. One important factor in some of this thinking is that many people still remember the days where most diagnoses were late and many followed years of misdiagnoses for other conditions.…

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08 Oct 2017

7 Comments

The shock effect never wears off

The shock effect never wears off

Awareness, Inspiration, Living with Neuroendocrine Cancer, Survivorship, TreatmentAdvanced neuroendocrine cancer, Carcinoid syndrome, Chemotherapy, Incurable cancer, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Quality of LIfe (QoL), Surgery

Patient stories are key to any awareness campaign. Nothing like a human being standing up and letting you know about their experience. Many are positive examples of how they are overcoming their trials and tribulations, others tell stories of a struggle. They all have different styles, some are the 'kick ass' type stories, some are just thankful, some are reflective - all of them are perfectly acceptable. I normally like to place myself somewhere in the middle with phrases like "I'm still here", although I can veer left and right when the mood takes me! Because of my social media…

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30 Sep 2017

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NETwork with Ronny © – Community Newsletter SEPTEMBER 2017

NETwork with Ronny © – Community Newsletter SEPTEMBER 2017

NewslettersAdvanced neuroendocrine cancer, Carcinoid tumour, Hormones, Incurable cancer, Lutathera, Malabsorption, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, PRRT, Serotonin, Somatostatin analogues, Surgery, Telotristat ethyl (Xermelo), Xermelo (Telotristat ethyl)

Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is September 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest: The European Commission (EC) approved Lu-177 Lutathera (PRRT) on 28 Sep. This is the first time the drug has ever been approved, despite being in use for over 10 years. In USA, the FDA gave a date of 28 Jan 2018 for its decision to approve or not. Read more here. The European Commission approved the use of XERMELO (telotristat ethyl) for use…

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01 Aug 2017

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NETwork with Ronny © – Community Newsletter JULY 2017

NETwork with Ronny © – Community Newsletter JULY 2017

NewslettersAdvanced neuroendocrine cancer, Carcinoid tumour, Hormones, Incurable cancer, Malabsorption, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, PRRT, Serotonin, Somatostatin analogues, Surgery, Telotristat ethyl (Xermelo), Xermelo (Telotristat ethyl)

Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is July 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). July 26th was the 'Cancerversary' of my diagnosis - I'm still here after 7 years and I'm apparently a veritable newbie! There's some great comments on my 'I'm Still Here' post - check them out ... 'click here' NET News The following news items may be of interest: Telotristat Ethyl (Xermelo) takes a step forward to being approved in Europe. Click here. PRRT takes a step forward to being approved in USA. Click…

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19 May 2017

5 Comments

ASCO 2017 – Let’s talk about NETs #ASCO17

ASCO 2017 – Let’s talk about NETs #ASCO17

Clinical Trials and Research5-HIAA, Advanced neuroendocrine cancer, American Society of Clinical Oncology (ASCO), Bone metastases, Cancer of unknown primary (CUP), CAPecitabine TEMozolomide (CAPTEM)., Carcinoid crisis, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, Chromogranin A (CgA), CLARINET, Comorbidity, DUNE trial, Durvalumab, ELECT study, Flushing, Ga68-OPS202, Grading, Hormones, Incurable cancer, Ki-67, Lanreotide, Liver metastases, Metastatic Neuroendocrine Cancer, Molecular markers, NETest, Neuroendocrine, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Octreotide, Pancreatic NET (PanNET), Peptide receptor radionuclide therapy (PRRT), Poorly differentiated, Pre-existing condition, PRRT, Quality of LIfe (QoL), Small intestine NET (SI NET), Somatostatin analogues, Stage, Surgery, Theranostics, Well differentiated

ASCO (American Society of Clinical Oncology) is one of the biggest cancer conferences in the world normally bringing together more than 30,000 oncology professionals from around the world to discuss state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field. As Neuroendorine Tumors is on a roll in terms of new treatments and continued research, we appear to be well represented with over 20 'extracts' submitted for review and display. This is fairly complex stuff but much of it will be familiar to many. I've filtered and extracted all the Neuroendocrine stuff into one list providing you with an…

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01 Mar 2017

9 Comments

NETwork with Ronny © – Newsletter February 2017

NETwork with Ronny © – Newsletter February 2017

NewslettersCarcinoid crisis, ENETS, Lanreotide, Lung NETs, Lutathera, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), PRRT, Surgery, Telotristat ethyl (Xermelo)

Hi NETworkers! Welcome to my fourth 'community' newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!). February was a slower month in blogging terms due to a major increase in contact from people privately asking for advice and others asking me to support external projects. I don't have an issue with private contact but please note my disclaimer. I also had a winter cold for a few days, so I relaxed a bit. Only a short month but I managed to accumulate the second biggest monthly blog views ever (January 2017 will be difficult to beat). Thank you all so much ♥ January's success…

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27 Feb 2017

4 Comments

It’s been 10 years since I saw a scalpel (….but my surgeon is still on speed dial)

It’s been 10 years since I saw a scalpel (….but my surgeon is still on speed dial)

Living with Neuroendocrine Cancer, Survivorship, TreatmentAdvanced neuroendocrine cancer, Axillary nodes, Carcinoid tumour, Distant metastatis, Endocrine, Ki-67, Lung nodule, Lymphadenectomy, Lymphatic system, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nodule, Octreoscan (Octreotide scan), Quality of LIfe (QoL), Supraclavicularfossa (SCF) lymph nodes, Surgery, Thyroid cancer

In 2012, I had a bunch of lymph nodes removed. Two separate areas were resected, only one was showing growth but both were showing up as hotspots on an Octreoscan. I had known since shortly after diagnosis in 2010 that 'hotspots' were showing in my left 'axillary' lymph nodes (armpit) and my left 'supraclavicular fossa' (SCF) lymph nodes (clavicle area). Some 10 months previously, I had a major liver resection, and 5 months prior to the liver resection, I had a small intestinal primary removed including work on some associated complications. There had always been a plan to optimise cytoreduction of my…

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27 Jan 2017

2 Comments

Endoscopy for NETs – taking the camera to the tumour

Endoscopy for NETs – taking the camera to the tumour

Awareness, Living with Neuroendocrine CancerAdvanced neuroendocrine cancer, Biopsy, Bronchoscopy, Camera pill, Capsule endoscopy, Carcinoid crisis, Carcinoid tumour, CLO test, Colonoscopy, Endoscopic retrograde cholangiopancreatography (ERCP), Endoscopic ultrasound (EUS), Endoscopy, Gastroscopy, Helicobacter pylori, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pancreatic cancer, Sigmoidoscopy, Surgery

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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…

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14 Dec 2016

4 Comments

Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma

Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma

A spotlight on NENs - Types, Awareness, Patient Advocacy, Spotlight on NENs - Types Series123I-Metaiodobenzylguanidine (mIBG), 131I-Metaiodobenzylguanidine (mIBG), 18F-FDG, 18F-FDOPA, 24-hour urinary catacholamines and metanephrines, Adrenal glands, Adrenal medulla, Adrenaline, Adrenocortical Carcinoma (ACC), Anxiety, AZEDRA, Catecholamines, EPAS1, Epinephrine, Familial NET, FH, Ga68 PET/CT, Genetics, Hormonal crisis, Hormones, Hyperadrenergic, Hypertension, Intraoperative hypertensive crisis, Iobenguane I 131, MDH2, MEN2 syndrome, MIBG scan, Multiple Endocrine Neoplasia (MEN), Nausea, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), NF1, Octreotide scan, Palpitation, Pheochromocytoma, RET, Scan, SDHA, SDHAF2(SDH5), SDHB, SDHC, SDHD, Somatostatin analogues, Surgery, Sweating, Tachycardia, The 5 E's, Vanillylmandelic acid (VMA), Von Hippel-Lindau (VHL) Syndrome

Updated 19th August 2025 I spend a lot of time talking about the most common forms of Neuroendocrine Tumours (NETs), but what about the less well-known types? As part of my commitment to all types of NETs, I'd like to shine a light on two less common tumour types known as Pheochromocytomas and Paragangliomas - with an incidence rate of approximately 8 per million per year. They are normally grouped together, and the definitions below will confirm why. If you think it's difficult to diagnose a mainstream NET, this particular sub-type is a real challenge. So, let's get definitions out…

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01 Oct 2016

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Neuroendocrine Cancer: Patient Power!

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentCancer grading, Diagnosis, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Pancreatic NET (PanNET), Prognosis, Surgery

There's a saying that the patient is the most underused person in healthcare and I think there's a lot of truth in that. However, I would suggest with Neuroendocrine Cancer, it's less true than for many other cancers. There are so many NET Cancer patients out there who know quite a lot about their cancer, and in some detail. Even the great Dr Liu once said that NET Patients frequently know more about NET Cancer than their doctors. If you go onto Twitter, if you go onto Facebook, if you read newspaper stories, you will find cancer patient stories in…

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27 Jul 2016

6 Comments

Exercise and Cancer: Forward is Forward

InspirationIncurable cancer, Neuroendocrine cancer, Quality of LIfe (QoL), Surgery

One of the very first blog posts I wrote was about exercise. Basically I said it was like medicine and I have not changed that view much. Exercise improves mental health by reducing anxiety, depression, and negative mood but it's also known to help improve self-esteem and cognitive function. You will not find a single healthcare institution that doesn't recommend exercise in any shape of form. All cancer patients should attempt to keep active and this is even more important if you are being treated for long-term cancer. Why? Because keeping active will not only help your physical condition but it will…

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24 Jun 2016

14 Comments

What you don’t know might kill you

What you don’t know might kill you

Awareness, TreatmentCarcinoid syndrome, Carcinoid tumour, Hormones, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Surgery

A few weeks before I was diagnosed in July 2010, Chris and I flew off to Barbados on holiday. Both of us were looking forward to a nice break after a hectic start to 2010. When we got back, we both agreed it was the most relaxing holiday we had ever been on. However, what I didnt know all the time I was lying on a sunbed soaking up the Caribbean sun drinking 'pina coladas', was the fact that Neuroendocrine Tumours had been growing in my small intestine, had spread into my mesenteric lymph nodes, into my liver, into my left…

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13 Jun 2016

4 Comments

Intra-Operative RadioTheraphy (IORT) for Neuroendocrine Cancer – new landmark treatment launch

Awareness, TreatmentAdvanced neuroendocrine cancer, Brain tumour, Breast cancer, Colon cancer, Colorectal cancer, ENETS, Head and Neck Cancer, Intraoperative radiotherapy (IORT), Lung Cancer, NET Centre of Excellence, Pancreatic cancer, PRRT, Surgery

New treatments seem to be appearing every month and that is good news for patients. I have a personal connection to this one though. In 2014, Chris and I walked along Hadrian's Wall, a 2,000-year-old World Heritage structure in Northern England. This was part therapy for me but also part fund-raising to help pay for this new treatment which launches today in Southampton General Hospital (UK) which was recently awarded the coveted title of European NET Centre of Excellence (along with Bournemouth and Portsmouth Hospitals). It is the first ever deployment of this type of treatment in UK and Chris and I were…

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28 Jan 2016

4 Comments

Innovation at Royal Free – Lung Biopsy and Radio Frequency Ablation Service

TreatmentBiopsy, Carcinoid tumour, Lung Cancer, Lung NETs, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Radio Frequency Ablation (RFA), Surgery

A team of radiologists and respiratory consultants who introduced a new and more efficient lung biopsy method at Barnet Hospital London, has been named the winner of the NHS Innovation Challenge Prize in the ‘cancer care’ category. Barnet Hospital is run by the Royal Free London NHS Foundation Trust which is well known for its Neuroendocrine Cancer Centre of Excellence. Not happy with this, they've now gone on to introduce a new service combining this innovative biopsy system with Radio Frequency Ablation (RFA) of tumours in the same procedure. Combined Biopsy with Radio Frequency Ablation (RFA) This new service has significant advantages…

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29 Dec 2015

2 Comments

Neuroendocrine Cancer – a Doctor’s experience

GeneralLiver embolization, Neuroendocrine, Neuroendocrine cancer, Quality of LIfe (QoL), Surgery

UNFORTUNATELY, MILL HILL TIMES HAVE REMOVED THE DOCTOR'S STORY FROM THEIR WEBSITE BUT I'M TRYING TO OBTAIN THE SCRIPT ELSEWHERE. When I was undergoing my initial treatment and surgery I didn't really have the knowledge I have now. I was initially treated by experienced Neuroendocrine Tumour (NET) specialists in an established NET Centre and I guess I felt comfortable with what was happening. In hindsight, I wish I had studied the disease earlier as I would have understood at the time what was actually happening to my body and more fully understood the treatments I was to undergo. As we…

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15 Oct 2015

17 Comments

Not all Cancer is simple

GeneralBreast cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Surgery

So Victoria Derbyshire has breast cancer and has used her 'workplace' as a platform to let people know she is a determined survivor. Nothing wrong with that, it's great cancer awareness for some and inspiration for others (including me). However, reading through various newspaper follow-up articles, blogs and social media comments, I can see criticism by many for producing an over simplified message (see picture below). Although many of us will be wishing it was so, not all cancer is simple! Take Neuroendocrine Cancer for example. For some, this 'silent' cancer can take years to be finally diagnosed whilst the patient is misdiagnosed with…

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21 Jul 2015

16 Comments

Sorry, I’m not in service

Sorry, I’m not in service

Awareness, Living with Neuroendocrine CancerNeuroendocrine cancer, Quality of LIfe (QoL), Surgery

This blog was first published in 2015 and featured by Macmillan Cancer UK - although they don't feature my guest blog now due to their revised publication rules (but you're reading it now so it doesn't matter!). See this link to their Facebook post publishing my guest blog click here .....let's activate this 10 year old discussion in the Facebook post comments! Let's get this post bumped up their Facebook feed - this generates awareness. It's good to be busy, it can take your mind off stuff you don't really want to think about. That was my tactic after being…

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14 May 2015

8 Comments

Chasing normality

Living with Neuroendocrine Cancer, Survivorship, TreatmentBlood clot, Clexane, DEXA scan, Lanreotide, Multidisciplinary team (MDT), Pulmonary embolism, Quality of LIfe (QoL), Scan, Somatostatin analogues, Stable cancer, Surgery, Thyroid, Vitamin D

Cancer 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…

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15 Jan 2015

4 Comments

Well done NHS!

Well done NHS!

TreatmentAdvanced neuroendocrine cancer, Coronavirus, COVID-19, NHS, Surgery

I've been reasonably lucky with my health over the years, suffering only the usual common ailments. I was slightly asthmatic as a child but this seemed to disappear when I left school going straight into military service. They say an army marches on its stomach... only partly true but the military did look after my health with regular check ups. I think the only medical emergency I had in my 29 years in that wonderful organisation was being knocked out in boxing training aged 16! When I left the military in 2001, I was fortunate to benefit from free health…

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07 Jan 2015

7 Comments

The Mother of all Surgeries

The Mother of all Surgeries

TreatmentChemotherapy, Distal pancreatectomy, Hyperthermic intraperitoneal chemotherapy (HIPEC), Neuroendocrine cancer, Neuroendocrine tumour (NET), Pseudomyxoma peritonei (PMP), Surgery, Total pancreatectomy

My plan for this week's blog was to continue with a surgery theme using the story of a lady who had what was described as the "Mother of all Surgeries" after being late diagnosed with a very rare and advanced type of appendiceal cancer. With NETs, surgery is a topical subject as not everyone will be able to have it and some might not even need it. Check out my blog "to cut or not to cut". I suggested in a previous blog that 'Surgery is a gift that keeps on giving' and that is probably true for many cancer survivors. However, I then added that NETs were…

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19 Aug 2014

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Met an old friend today; his name is Gym

GeneralCarcinoid syndrome, Surgery

I think I first met Gym at school in the sixties - we normally met on a weekly basis. We were reacquainted when I joined the army and hooked up more frequently! It was there I met some of Gym's friends, known as PTIs (Physical Training Instructors). Their opening line was normally "Ten times round my large bronze chest...... GO! " and then we would proceed with the 'beasting'. I suspect I might now be prodded by the PTIs on my facebook page - there are one or two out there :-) I've always been a fairly fit guy but over time…

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17 Aug 2014

2 Comments

Am I at fighting weight?

GeneralSurgery

I recently blogged about my boxing experience in post: http://wp.me/p4AplF-r7 In those days I was just a wee skinny 16 year old guy! I think I was in the Bantamweight category, somewhere between 8 and 9 stone (50 - 57 kg). Although I gained some weight after years of service in the military, I didn't really 'bulk out' in the wrong places until I left the military aged 45. Even then it wasn't what you would call overweight or obese. I joined a gym, determined to maintain some form of fitness. I sacked it due to pressures of work but then…

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12 Jul 2014

1 Comment

Finding Hotspots

GeneralSurgery

Just back from a nice relaxing holiday in Tenerife. I don't know about you but when overseas I find myself looking for 'hotspots' everywhere I go....... I don't mean trendy entertainment venues, I'm talking about the modern phenomenon known as a WiFi signal! I also mean free and open connections. Even recent price reductions within Europe did not tempt me to use 'data' overseas and I didn't even want to take advantage of the £2 per day upgrade of my mobile phone account which would give me access to my minutes/MBs overseas on a temporary basis. I just look for free WiFi…

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19 May 2014

1 Comment

If it’s not raining, it’s not training

Patient AdvocacySurgery

Only a week left until Chris and I set off on our 84 mile trek across Hadrian's Wall in the North of England. We've been training for this since January 2014 and probably covered sufficient distance to have walked the wall 5 times over! Didn't stop us going for a fast short walk this morning and despite the heat there was no sweat. I think we're ready :-) For the last few days we've been thinking it might be tougher if this heat continues. Only a month ago, we were saying it might be tougher with all the rain we were having! We…

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10 May 2014

2 Comments

Through the Keyhole?

Patient AdvocacySurgery

Through the Keyhole is a Panel Game Show on telly originally hosted by Lloyd Grossman (who?) and then Sir David Frost. It was resurrected last year hosted by Keith Lemon. Sorry to disappoint you but this blog is about a different type of keyhole. Today I'm on 'K' words (I drew a blank on J). Keyhole Surgery After I had major surgery in Nov 2010, I left the hospital knowing that I'd be returning later for another but I needed to be fit enough first. This took some time but in Apr 2011, I returned for further surgery, this…

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