Understanding your Somatostatin Receptor (SSTR) PET Results

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…
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Neuroendocrine Cancer:  Glossary of Terms

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

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

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,…
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Neuroendocrine Cancer: Diagnosing the Undiagnosed

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

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

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

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

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

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…
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Neuroendocrine Cancer – Exciting Times Ahead!  

Neuroendocrine Cancer – Exciting Times Ahead!  

Inspiration, Survivorship, Treatment
In the last 12-24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer.  Scans, radionuclide therapies, combination therapies, somatostatin analogues, biological therapies, etc.  Some of the announcements are just expansions of existing therapies having been approved in new (but significant) regions. Compared to some other cancers, even those which hit the headlines often, we appear to be doing not too badly.  However, the pressure needs to stay on, all patients need access to the best diagnostics and treatments for them; and at the requisite time.  There's even more in the pipeline and I'm hoping to continue to bring you news of new stuff as I have been doing for the last year. Some of these new diagnostics and treatments will benefit eligible patients who are…
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Diagnosed with Neuroendocrine Cancer: Hurry up and wait

Diagnosed with Neuroendocrine Cancer: Hurry up and wait

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
When I was diagnosed with metastatic well differentiated Neuroendocrine Cancer on 26 July 2010, I just wanted them to hurry up and fix my body so I could get back to normal get back to work. My expectations of speed turned out to be wildly inaccurate and in hindsight, it's because I was wildly naïve. With Neuroendocrine Cancer, particularly well-differentiated, low or medium grade tumours, it sometimes doesn't work as fast as you would think and there are very good reasons for that.The complexity of the condition needs some consideration as the physicians work up a treatment plan, when physician work within a NET structure, other doctors can be involved and rushing into a lone person decision sometimes has adverse effects. I'm quite happy and content they took their time,…
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Somatostatin Receptors

Somatostatin Receptors

Awareness, Treatment
Don't understand Somatostatin Receptors? Join the club! I got my head around the term 'Somatostatin' and 'Somatostatin Analogues' some time ago but the term 'Somatostatin Receptor' (SSTR) is still a bit of a mystery. SSTRs do come up in conversation quite often and I'm fed up of nodding sagely hoping it will eventually become clear! On analysis it looks like a technical subject - and therefore a challenge.I've taken a logical approach working from 'Somatostatin' to 'Somatostatin Analogue' before commencing on the 'receptor' bit. It is intentionally brief and (hopefully) simplistic!SomatostatinIt's important to understand this hormone and then why your 'butt dart' is generically called a 'Somatostatin Analogue'.Some Neuroendocrine Tumours secrete hormones and peptides that cause distinct clinical syndromes, including but not limited to, carcinoid syndrome.Somatostatin is a naturally occurring…
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Neuroendocrine Cancer – my liver surgery

Neuroendocrine Cancer – my liver surgery

Treatment
Laparoscopic Surgery ("Keyhole") From day 1 of my diagnosis, I knew my liver was going to need some attention, but I had always known that total removal of all tumours would not be possible - the diagnostic scan confirmed I had an incurable disease. This critical organ did in fact produce the biopsy confirming Neuroendocrine Cancer. The early scans indicated multiple liver lesions and an Octreotide scan reported several with quite avid isotope activity.However, as you can see from my clinical history, they first stabilised my syndrome via daily Octreotide so my tumours were subdued ready for major surgery which took place Nov 2010 - I wrote about this as Part 1 and Part 2 stories. As we are talking about my liver, it's worth noting that a bland Liver…
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Neuroendocrine Cancer:  My experience with Lanreotide (Somatuline Autogel/Depot)

Neuroendocrine Cancer: My experience with Lanreotide (Somatuline Autogel/Depot)

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment
On 9th December 2021, I celebrated 11 years of Lanreotide - click here to read about that.My Lanreotide ExperienceWhen I was discharged from hospital following major surgery in Nov 2010, I knew I would shortly be commencing long-term monthly 'somatostatin analogue' treatment and had assumed Octreotide (Sandostatin LAR) would be the drug of choice. However, my Oncologist prescribed Lanreotide (known in the UK as Somatuline Autogel and elsewhere as Somatuline Depot).  Technically this is a hormone therapy (it's not chemo).Somatostatin Analogues (Octreotide/Lanreotide) are mainstay treatments for many Neuroendocrine Cancer patients and their introduction is a very significant factor in the improvement of both prognostic outcomes and quality of life.  Both drugs are designed to control Carcinoid Syndrome (but can be used selectively in other NET syndromes) and both have anti-tumour effects.  Check out…
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No Fear

No Fear

Inspiration, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email It's that time again, every 6 months I need some checks. I've done the specialist blood test (Chromogranin A - CgA) and the 5HIAA and am waiting on my CT scan appointment. It's also time for my annual Echocardiogram. I then see my Consultant and he delivers the news.I positively look forward to my tests and I cannot wait to get into that scanner! 'Scanxiety' isn't in my dictionary.  Why? Because testing is one thing that's going to keep me alive for as long as possible.  If I don't get regularly tested, then one day I might just 'keel over' because something wasn't spotted early enough.  Even in the event…
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Neuroendocrine Cancer – Horrible Hormones

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…
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