Ga68 PET/CT - Ronny Allan - Living with Neuroendocrine Cancer

03Jan 2023 by Ronny Allan 2 Comments

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, Treatment

ReviewIn 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 but much is due to a change in Facebook algorithms which affected many ‘pages’ reducing their scope (the more cynical might say it was done to drive advertising revenue but …….). 2022…

14Dec 2022 by Ronny Allan No Comments

A multicentre validation of the NETPET score (Dual [68Ga]DOTATATE and [18F]FDG PET/CT in patients with metastatic GEPNENs

Clinical Trials and Research, Patient Advocacy, Survivorship, Treatment

Background It's normally the case that the higher the grade/Ki67 in Neuroendocrine Neoplasms (NENs), the less likely the tumours will have somatostatin receptors and therefore be able to take advantage of somatostatin receptor PET (SSTR PET) as the gold standard in nuclear imaging. This is why most grade 3 NENs will receive [18F]FDG PET/CT which finds glycolytic activity in the tumour and predicts an aggressive disease course and normally a higher histological grade. It can also add to prognostic outcomes, which in turn can add to therapy choice decisions. There is an overlap though, particularly with the recognition of well-differentiated Grade 3 Neuroendocrine Tumours (NETs). It is known that some glycolytic activity might be present in some well-differentiated NETs, in particular, grade 3 and the upper range of 2 Neuroendocrine…

05Nov 2022 by Ronny Allan No Comments

Incidental Findings in Somatostatin Receptor PET (SSTR PET) scans (e.g. Ga68/Cu64)

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Incidental Findings in SSTR PETSomatostatin Receptor (SSTR) PET scans (e.g. Ga68/Cu64) have transformed the imaging landscape for Neuroendocrine Cancer, mainly for well-differentiated NETs, most of which will be somatostatin receptor positive. However, Oncologists/NET Specialists and radiologists must be aware of the various physiologic and other pathologic processes in which cellular expression of SSTR can result in interpretative error. Included in these pitfalls are incidental findings. What is an incidental finding? An incidental finding, also known as an incidentaloma, may be defined as “an incidentally discovered mass or lesion, detected by CT, MRI, or other imaging modality (e.g. PET) performed for an unrelated reason.” An increase in the utilisation of imaging examinations over the past three decades has led to a marked increase in the number of findings detected that are unrelated to the…

19Oct 2022 by Ronny Allan 3 Comments

Understanding your Somatostatin Receptor (SSTR) PET Results

Patient Advocacy

Background In my online patient group, there is constant discussion about the meaning of both pictures and words on scan reports. The one that seems to cause the most confusion is PET scans, mainly somatostatin receptor (SSTR) PETs such as Ga68 and Cu64 variants. Worth adding that it's the addition of a nuclear tracer that makes PETs seem different. Generally speaking, the PET hardware is essentially the same. Most have a built-in CT scan, much less frequently an MRI scan. Confusion is often triggered by healthcare system processes where the patient receives the report before the appointment to discuss the results with the referring physician. Cue anxiety because the average patient reader does not understand and certain words cause them to worry, often unnecessary worry. The patient then becomes impatient…

03Oct 2022 by Ronny Allan 2 Comments

Neuroendocrine Cancer: Glossary of Terms

Awareness, Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Welcome to my Neuroendocrine Cancer Glossary of Terms list providing a source of meanings for acronyms and medical terms, all sourced from top Neuroendocrine Cancer and general cancer sites. How to use this list: 1. If your term begins with an A, click on A to find all terms beginning with A. Select your term from the list. 2. For numerical terms, please click on the hashtag (#) symbol in the A-to-Z strip. 3. The term definition including acronym or abbreviation will be given in full along with any of my published articles containing that term as long as I have tagged it on my website to display in the list. Please note I'm constantly working on the repository to clean up all definitions, adding and removing links where necessary,…

30Aug 2022 by Ronny Allan No Comments

Prospective phase II trial of [68Ga]Ga-NODAGA-E[c(RGDyK)]2 PET/CT imaging of integrin for prognostication in patients with neuroendocrine neoplasms

Clinical Trials and Research

August 25, 2022 -- A new gallium-68 PET radiotracer appears effective for predicting higher risk of disease progression and mortality in patients with neuroendocrine tumors, according to a study published August 18 in the Journal of Nuclear Medicine. Conclusion: Tumor lesion uptake of 68Ga-NODAGA-E[c(RGDyK)]2 was evident in patients with all grades of NEN. High uptake was associated with a poorer prognosis. Further studies are warranted to establish if 68Ga-NODAGA-E[c(RGDyK)]2 PET/CT may become a prediction tool for identification of patients eligible for treatments targeting integrin αvβ3. Why is this different to regular Ga68 Dotatate? In the simplest of terms, Ga68 Dotatate is targeting somatostatin receptors which are known to be expressed by most NETs, it can help indicate if treatment using somatostatin analogue therapy is feasible. Integrin αvβ3 recognizing cell surface integrins is upregulated on endothelial…

21Jun 2022 by Ronny Allan No Comments

New PET findings after COVID-19 vaccination: Keep Calm and Carry On?

Patient Advocacy

After a few months of introducing C-19 vaccines, many cases of false-positive lymph nodes were reported on nuclear PET scans, some of which led to unnecessary biopsies and unnecessary worry for the patients concerned.According to Mayo Clinic, the positive nodes were on the same side as the vaccine shot in the cases where the injection site was known. Mayo added that some cases had uptake in the deltoid muscle, which is normally where vaccine injections are given, leading to increased suspicion of false positive in cases where uptake was in both deltoid muscle and axillary lymph nodes (armpit). At least one case was found in the supraclavicular nodes (clavicle area), but it was noted that might have been a stronger immune reaction due to the patient undergoing immunotherapy.This issue had…

11Sep 2021 by Ronny Allan No Comments

Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021

Clinical Trials and Research, Patient Advocacy, Survivorship, Treatment

Background. For those who want a quick run through of Neuroendocrine Tumors from diagnosis to selection of treatment, about the treatments themselves plus what is the Future Directions in the Management of Neuroendocrine Tumors. There are 8 episodes, and each is around 3-5 minutes long. I personally found them very useful and in a language understandable to patients. Great job by OncLive and Dr Reidy-Lagunes! Episode 1 - Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors Diane Reidy-Lagunes, MD, provides an overview of neuroendocrine tumors, along with specific considerations for optimal diagnosis and prognostication. Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors (onclive.com) Episode 2 - Neuroendocrine Tumor Pathogenesis and Molecular Testing Expert insight on the pathogenesis of neuroendocrine tumors and the best use of molecular testing to inform treatment decisions.Neuroendocrine Tumor Pathogenesis…

13Jul 2021 by Ronny Allan No Comments

Every picture tells a story (point, click, read)

Awareness, Clinical Trials and Research, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Treatment

I always try to use graphics for a number of pictures, I admit mainly to catch people's attention but also because sometimes a picture on its own tells a story or at least provides a great introduction to one. If the picture catches your eye, clicking on will take you to the text. This post will auto update as new blogs are published. thanks for reading and sharing! Scroll, point, click, read, share! Click here and answer all questions to join my private Facebook group Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Thanks for reading. Ronny I’m also active on Facebook. Like my page for even more news. Help me build up my new site here –…

30Apr 2021 by Ronny Allan 1 Comment

Dual Tracer (68Ga-DOTATATE and 18F-FDG) PET Imaging in G2 & G3 Gastroenteropancreatic Neuroendocrine Tumours

Clinical Trials and Research

For some time now, I've been watching the development of PET scans for Neuroendocrine Neoplasms (NENs). I use the term 'Neoplasms' because there are different strategies for well and poorly differentiated types, Neuroendocrine Tumour (NET) and Neuroendocrine Carcinoma (NEC) respectively.It's known that most NETs have somatostatin receptors which makes tumours be seen better on somatostatin receptor-based imaging e.g. 68Ga-DOTATATE or 64Cu DOTATATE, but more aggressive types tend not to have working somatostatin receptors and are better seen on regular PET, i.e. 18F-FDG PET/CT. However, nothing in NENs is simple and there's always outliers. This has been highlighted since the addition of a Grade 3 Well Differentiated NET into the equation.The variable clinical outcome of patients with G2 & G3 well diff Gastroenteropancreatic Neuroendocrine Tumours (GEP NETs) makes the selection of…

15Apr 2021 by Ronny Allan No Comments

A Diagnostic Imaging Study of 64Cu-SARTATE™ for Neuroendocrine Tumours

Clinical Trials and Research

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email We probably should start to use the term "Somatostatin Receptor PET" (SSTR PET) a bit more. We got used to using the term Ga68 PET but since then we have an approved copper version known as 64Cu Dotatate (commercial brand name in US DETECTNET™). Now we have another in the clinical trial pipeline and will add others as they come onto my radar.Ga68 Dotatate/TOC/NOC - click hereCu64 Dotatate (DetectNET) - click hereA Diagnostic Imaging Study of 64Cu-SARTATE™ Using Positron Emission Tomography (PET) on Patients With Known or Suspected NETsReference: NCT04438304Trial status: RecruitingThe purpose of this study is to assess the performance of imaging agent 64Cu-SARTATE in participants with known or suspected Gastroenteropancreatic…

15Dec 2020 by Ronny Allan No Comments

Neuroendocrine Tumours – now you see them, now you don’t!

Treatment

In my post entitled "If you can see it, you can detect it", I listed the different types of scanning techniques and technology to find evidence of disease in Neuroendocrine Tumours (NETs). Of course, while scans, blood and (current) marker tests can give some pretty big and important clues, "tissue is the issue" to determine type.Even after formal diagnosis, seeing all the tumours can be a challenge with NETs. In the article I quoted above, I indicated that scans for NETs can be analogous to picking 'horses for courses'. For example, most NETs have somatostatin receptors and can often be seen better on functional scans e.g. somatostatin receptor scintigraphy (SRS) or somatostatin receptor PET (SSTR-PET), combined with the use of radionuclides designed specifically for this purpose e.g. In 111, Tc99m,…

13Dec 2020 by Ronny Allan 2 Comments

Selecting patients and the Challenges of Evaluating Response to PRRT in GEPNETs: The Present and the Future

Clinical Trials and Research, Patient Advocacy, Treatment

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Fascinating article from the Italian NET scientific community. This article is more than just what the title says, it provides overviews on many facets of NETs including markers, scans and PRRT itself. It covers how to select patients for PRRT in the first place, i.e. who is most likely to get a good response to this treatment and then look at how to track and assess that response. The important thing I gathered from reading is that none of this is a precise science, there are too many variables. And while this article focusses on the clinical factors, there can of course be non-clinical factors in play in different countries…

28Jun 2020 by Ronny Allan No Comments

SSTR PET – Ga68-DOTA-JR11 vs Ga68-DOTATATE

Clinical Trials and Research

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Headline - 68Ga-DOTA-JR11 was found to detect significantly more liver lesions than 68Ga-DOTATATE; however, 68Ga-DOTATATE detected more bone lesions than 68Ga-DOTA-JR11.Although it had been in trial use for some years in Europe and elsewhere, the formal approval of 68Ga-DOTATATE has led to an increase in the development of other radionuclides, some in conjunction with therapeutic options (i.e. PRRT) making a 'theranostic' approach to diagnosing, treating and surveillance Neuroendocrine Cancer patients with somatostatin receptor positive tumours. I also wrote last year about another option called 64Cu, something already available in Europe, in particular Denmark.In another development which has been running for some time, a Ga68 variant called 68Ga-DOTA-JR11 has been in trial…

08Jun 2019 by Ronny Allan No Comments

New Radiotracer Can Identify Nearly 30 Types of Cancer – SNMMI – 68Ga-FAPI PET/CT

Clinical Trials and Research, Living with Neuroendocrine Cancer

Updated 17th March 2023 When I wrote about this new PET in June 2019, it was for interest only, but I curiously noted the existence of "NET" in the list of 28 cancers. It is designed to compete with FDG PET. The study comes from a joint China/Singapore initiative. This update now confirms it could be more efficient than FDG for those types of cancer where FDG is the optimum imaging. Headline "A new radiotracer, 68Ga-FAP-2286, has been found to be more effective than the most commonly used nuclear medicine cancer imaging radiotracer, 18F-FDG. In a study published in the March issue of The Journal of Nuclear Medicine, 68Ga-FAP-2286 detected 100 percent of primary tumors across multiple cancer types as compared to 18F-FDG, which identified only 80 percent. 68Ga-FAP-2286 was also more effective in detecting lymph…

19Dec 2018 by Ronny Allan 2 Comments

Neuroendocrine Cancer: a needle in a haystack?

Patient Advocacy

Reviewed and edited 16th July 2023It's no secret that Neuroendocrine Cancer can be difficult to diagnose. Although earlier diagnosis is improving (as reported in the SEER database report issued in 2017 and also in many other places), there is still a lot of ground to cover. There are a number of reasons why these Neoplasms are often difficult to correctly and quickly diagnose including but not limited to: - they grow silently, they often produce vague symptoms which can be mistaken for much more common illnesses, and their complexity is not fully understood.Neuroendocrine Cancer is a heterogenous group of cancers so I may use the following terms in this post:Neuroendocrine Neoplasm (NENs) - a combination term for both well differentiated Neuroendocrine Tumours (NETs) and Neuroendocrine Carcinomas (NECs)I wanted to cover…

10Dec 2018 by Ronny Allan 3 Comments

Neuroendocrine Cancer Clinical Trial – Lutetium-177 OPS-201 (Satoreotide)

Clinical Trials and Research

This trial drug was once owned by Ipsen but they decided to sell it off. However, in Jun 2022, Ariceum Therapeutics (Ariceum), a private biotech company developing a radiopharmaceutical product for the diagnosis and systemic targeted radiation therapy of certain hard-to-treat cancers, announced the successful investment source of EURO 25 Million. The proceeds from the financing will enable Ariceum to further develop its lead asset and proprietary peptide derivative, satoreotide. Satoreotide is a radiopharmaceutical drug and an antagonist of the somatostatin type 2 (SST2) receptor which is overexpressed in many cancers, including certain hard-to-treat cancers such as small cell lung cancer (SCLC), high-grade neuroendocrine tumours (NETs) and neuroblastoma, an aggressive, rare type of cancer that occurs mainly in young children. Satoreotide will be used as a 'theranostic' for both the diagnosis and…

07Sep 2018 by Ronny Allan 3 Comments

Neuroendocrine Cancer: Diagnosing the Undiagnosed

Patient Advocacy

Neuroendocrine Cancer is one of a number of "difficult to diagnose" conditions. Many types of Neuroendocrine Cancer come with an associated syndrome and these syndromes can mimic everyday illnesses. In many cases, people don't even feel ill while the tumours grow. Most types of this cancer are slow-growing but there are also aggressive versions. Although things appear to be improving in diagnostic terms, it can sometimes take years for someone to be finally diagnosed correctly and get treatment, albeit in some cases, too late for any hope of a curative scenario. It's a very sneaky type of cancer and if left too long it can be life threatening - Click here to find out why. The road to a diagnosis of Neuroendocrine Cancer is often not straight or easy to navigate.…

30Aug 2018 by Ronny Allan 2 Comments

Detectnet™ (64Cu-DOTATATE) – an expansion of the Somatostatin Receptor PET Imaging for Neuroendocrine Cancer

Clinical Trials and Research, Living with Neuroendocrine Cancer, Treatment

Edit 21st January 2021. The imaging time window of 64Cu-DOTATATE positron emission tomography/computed tomography (PET/CT) for patients with neuroendocrine neoplasms can be expanded from one hour to three hours post-injection, according to new research published in the January 2021 issue of The Journal of Nuclear Medicine. Read more here Edit 4th September 2020. 64Cu-dotatate now named Detectnet™ is approved for use by US FDA. Majority read revealed Detectnet had over 98% accuracy, 100% sensitivity, and over 96% specificity to confirm or exclude presence of disease. Read more here. Edit 14th July 2020. Expanded Access Program via clinical trial now recruiting - see below. The objective of this trial is to provide patients with confirmed or suspicion of NET access to Copper Cu 64 Dotatate for the detection, localization, and monitoring of…

21Jul 2018 by Ronny Allan 16 Comments

Neuroendocrine Cancer: Somatostatin Receptor (e.g. Ga68, Cu64) PET Scans – a game changer?

Living with Neuroendocrine Cancer, Survivorship, Treatment

This is not my personal scan When I was offered my very first Ga68 PET/CT at a 6 monthly surveillance meeting in May 2018, I was both excited and apprehensive. Let me explain below why I had a mix of emotions. You can read about my Ga68 PET experience here.I was diagnosed in 2010 with metastatic NETs clearly showing on CT scan, the staging was confirmed via an Octreotide Scan which in addition pointed out two further deposits above the diaphragm (one of which has since been dealt with). In addition to routine surveillance via CT scan, I had two further Octreotide Scans in 2011 and 2013 following 3 surgeries, these confirmed the surveillance CT findings of the remnant disease. The third scan in 2013 highlighted an additional lesion in…

03Jul 2018 by Ronny Allan 4 Comments

Clinical trial of 177Lu-DOTA-EB-TATE – Long-lasting radionuclide therapy for advanced neuroendocrine tumors

Clinical Trials and Research

Update April 2023There is now an interventional Phase 1 clinical trial of this PRRT variant happening in Memorial Sloan Kettering Cancer Center, New York, New York, United States, 10065, contact Contact: Lisa Bodei, MD, PhDThe clinical trial document is here NCT05475210 - this is a small trial (9 participants) and make sure you check the exclusion and inclusion criteria. Click here:177Lu-DOTA-EB-TATE in Untreated (Naïve) Adult Patients With Advanced, Well- Differentiated Neuroendocrine Tumors - Full Text View - ClinicalTrials.govIn the NewsUpdate in March 2021. Molecular Targeting Technologies, Inc. (MTTI), a clinical stage radiopharmaceutical therapy company, announced the approval of an Investigational New Drug (IND) application by the U.S. Food and Drug Administration (FDA). It enables a Phase I clinical study of the Safety and Dosimetry of its lead product, EBTATE (177Lu-DOTA-EB-TATE),…

31May 2018 by Ronny Allan 17 Comments

All you need to know about Somatostatin Receptor PET/CT Scans for Neuroendocrine Tumours

Treatment

Cancer is a growth industry ...literally! More people are being diagnosed than ever before. Fortunately, more people are surviving than ever before. This is against a backdrop of better awareness, better screening in the big population cancers, and to a certain extent better diagnostic tools, all of which is leading to earlier diagnosis. So how does this affect Neuroendocrine Cancer? According to the latest SEER database figures for Neuroendocrine Cancer, one reason for the 7 fold increase in incidence rates since the 1970s is all of those things above including better diagnostics. This has led to a revised set of epidemiological information in many countries that have made the effort to accurately update their cancer registries and there are consistent reports of incidence rates way beyond the recognised rare thresholds.…

24Oct 2017 by Ronny Allan 2 Comments

Round up of NANETS 2017 – Let’s talk about NETs #NANETS2017

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

NANETS (North American Neuroendocrine Tumor Society) is one of the biggest NET conferences, bringing together NET Specialists from around the world to discuss state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field of Neuroendocrine Neoplasms (Tumors and Carcinomas). This is fairly complex stuff but much of it will be familiar to many. I’ve filtered out several outputs from the conference which I think are both relevant and topical to patients. The list is below allowing you to easily peruse and read further via linkages if you need to read more. Remember, some of these are extracts so do not contain all the details of the research or study – although some of the linkages will take you to in-depth information if that’s your bag. Where applicable, I’ve also linked…

08May 2017 by Ronny Allan 45 Comments

All you need to know about Peptide Receptor Radionuclide Therapy (PRRT)

Clinical Trials and Research, Treatment

Short PRRT PrimerWhat is Peptide Receptor Radionuclide Therapy (PRRT)?What is PRRT? PRRT stands for Peptide Receptor Radionuclide Therapy, an FDA-approved therapy used for systemic treatment of neuroendocrine tumors. Peptide refers to the small molecule for this therapy. The Peptide used (DOTATATE or DOTATOC or DOTANOC) is very similar to Somatostatin, a hormone which binds to receptors found on neuroendocrine tumors. Receptor refers to a specific target on neuroendocrine tumor cells that the peptide attaches to. After the peptide joins with a Receptor, it becomes attached and enters the targeted tumor cell. Radionuclide refers to radioactive atom that is attached to the peptide. As the peptide enters the cell, it brings the Radionuclide into the tumor cell. The radionuclide (e.g. lutetium-177), then decays and emits radiation within the tumor cell.Therapy refers to the idea that we are using this combination of Peptides, Receptors, and Radionuclides…

06Apr 2017 by Ronny Allan 2 Comments

Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Edited and refreshed 5th June 2023 OPINION There's a lot of inaccurate and out-of-date information out there. Some are just a lack of understanding, and some are caused by out-of-date websites. Often the problem is a result of patient forum myth spreading exacerbated by poor moderation in the groups concerned. Some can only be described as propaganda. Some of it even comes from uninformed doctors and bizarrely and disappointingly from NET advocate organisations. All the graphics below contain links to relevant blog posts. Myth 1: All Neuroendocrine Neoplasms will metastasise Simply untrue. They are a heterogeneous group of tumours. Read more here [caption id="attachment_38543" align="aligncenter" width="640"] Click on the picture to read more[/caption] Myth 2: All Neuroendocrine Tumours are terminal Not true. By any definition of the word terminal in…

21Feb 2017 by Ronny Allan No Comments

Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment

I recently wrote a blog called Neuroendocrine Cancer – Exciting Times Ahead! I wrote that on a day I was feeling particularly positive and at the time, I wanted to share that positivity with you. I genuinely believe there's a lot of great things happening. Don't get me wrong, there's a lot still to be done, particularly in the area of diagnosis and quality of life after being diagnosed. However, this is a really great message from a well-known NET expert. In an interview with OncLive, Jonathan R. Strosberg, MD, associate professor at the H. Lee Moffitt Cancer Center in Florida, discussed his presentation on NETs at a recent 2016 Symposium, and shed light on the progress that has been made in this treatment landscape. OncLive: Please highlight some of the main points from your…

18Jan 2017 by Ronny Allan 5 Comments

Theranostics for Neuroendocrine Cancer – A Find and Destroy Mission

Awareness, Clinical Trials and Research, Living with Neuroendocrine Cancer, Treatment

[caption id="attachment_14426" width="1200"] Courtesy of Pashtoon Kasi MD on Twitter https://twitter.com/pashtoonkasi/status/1078675398601396224[/caption] Theranostics is a joining of the words therapeutics and diagnostics. You may also see it conveyed as 'Theragnostics' and these terms are interchangeable. The basic aim of theranotistics is to find and then destroy the 'bad guys'. With Neuroendocrine Cancer, finding the tumours (the bad guys) can often be a challenge - they can be small and/or difficult to find - they are sometimes expert at camouflage. Moreover, once found, they can then be difficult to treat (destroy), as they can often prove resistant to conventional cancer drugs and many are inoperable due to sheer quantity, spread and positioning. When they are found and identified, it's also really helpful to know from the intelligence gathered, how successful the destroy…

14Dec 2016 by Ronny Allan 4 Comments

Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma

A spotlight on NENs - Types, Awareness, Patient Advocacy, Spotlight on NENs - Types Series

Updated 6th August 2023I 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 of the way:Pheochromocytomas (Pheo for short)Pheochromocytomas are tumours of the adrenal gland that produce excess adrenaline. They arise from the central portion of the adrenal gland, which is called the adrenal medulla…

05Nov 2016 by Ronny Allan 8 Comments

Neuroendocrine Cancer – If you can see it, you can detect it!

Living with Neuroendocrine Cancer, Survivorship

Content in my review queue (line). Background Scanning is a key diagnostic support and surveillance tool for any cancer. Even though you have elevated bloods or urine (....or not), a picture of your insides is really like a thousand words.... and each picture has a story behind it. Scanning can be a game changer in the hunt for tumours and although scans do not normally confirm the cancer type and grade, they certainly help with that piece of detective work and are key in the staging of the cancer. When I read stories of people in a difficult diagnosis, I always find myself saying 'a scan might resolve this' and I always suggest people should try to get one. Even in the case of a story about late diagnosis or a misdiagnosis, I…

23Jul 2016 by Ronny Allan 7 Comments

Neuroendocrine Cancer: Troublesome Thyroids

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment

In 2013, just when I thought everything seemed to be under control, I was told I had a 'lesion' on the left upper lobe of my thyroid. At the time, it was a bit of a shock as I had already been subjected to some radical surgery and wondered if this was just part of the relentless march of metastatic NET disease. The thyroid gland does in fact get mentioned frequently in NET patient discussions but many of the conversations I monitored didn't seem to fit my scenario - cue relentless study! I've been meaning to write this blog for some time but here is a synopsis of my research translated into 'patient speak'. This is intentionally brief, it's a big subject. I'll finish off with an update on where I…

21Mar 2016 by Ronny Allan 15 Comments

I’m only as good as my last scan

Living with Neuroendocrine Cancer, Survivorship

[caption id="attachment_5240" align="aligncenter" width="600"] Scanning - a piece of cake![/caption] "I'm only as good as my last scan". I received this comment last week in response to one of my posts and I thought it was a very pragmatic thing for someone to say. A NET patient under surveillance has regular tests at determined intervals but the one that is most likely to spot disease progression, stability or regression is a scan. Markers such as (say) Chromogranin A (CgA) or 5HIAA are clearly useful but in an ongoing surveillance scenario, they alone would not be used as a firm declaration of progression, stability or regression. Every picture tells a story and a scan is normally the confirmation required whether it's a CT, MRI or PET (etc). IF YOU CAN SEE…

02Feb 2016 by Ronny Allan 21 Comments

Metastatic Neuroendocrine Tumours – Incurable is not untreatable

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

OPINION. Metastatic Neuroendocrine Tumours - incurable is not untreatable.When I was being officially told I had advanced and incurable cancer, I did what most people seem to do on films/TV ..... I asked "how long do I have". The Oncologist started off with " ... perhaps just months ........". That must have been quite a shock because for a few moments after that, I heard nothing - my brain was clearly still trying to process those words - I wasn't even feeling unwell! The really important bit I missed was him go on to say "...but with the right treatment, you should be able to live for a lot longer". Fortunately, my wife Chris heard it all and I was refocused. "OK Doc - let's go" I said. Always take someone with you…

16Oct 2014 by Ronny Allan 14 Comments

Neuroendocrine Cancer – Horrible Hormones

Patient Advocacy

Hormonal imbalances are quite common in many conditions including day to day stuff. With Neuroendocrine Cancer, it can be a real challenge both at diagnostic and maintenance phases. In addition to the cancer angle, there's some strange stuff going on, inexplicable, frightening for the patient, an unwanted ingredient causing chaos!Until I was diagnosed with metastatic Neuroendocrine Cancer, I didn't have a clue about hormones - it's one of those things you just take for granted. However, hormones are vital to human health (male and female) and it's only when things go wrong you suddenly appreciate how important they are. Hormones are involved in many conditions, not just an issue with Neuroendocrine Tumours (NETs) but the presence of over-secreting hormones (often called peptides throughout) is useful to aid a diagnosis, albeit…

Tag: Ga68 PET/CT