Neuroendocrine Cancer – normally slow but always sneaky?

 

cancer cells attack

There’s a lot of scary diseases in this world but some of them are particularly spooky.  One such spooky disease is the lesser known type of cancer that infiltrated my body – Neuroendocrine Cancer (aka Neuroendocrine Tumors or NET for short).  Not only is it scary and spooky, but it’s also cunning, devious, misleading, double-crossing, and it likes nothing better than to play tricks on you.

It will grow in your body without you knowing.  It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum and a host of other places. It can be fiendishly small to avoid being seen.  Once it’s established in the primary location (….or locations), it will try to break out via your blood and lymphatic systems.  It wants to establish other bases in your mesentery, your liver, your lymph nodes, your bones and any other place it can get to.

It can often be uncannily quiet, not showing any symptoms. However, sometimes it wants to have fun by over-secreting certain hormones to add or introduce symptoms which mimic many other diseases such as IBS, asthma, abdominal upset, diarrhea, flushing. These are just more tricks up its sleeve.  You will go to your doctor, perhaps many times, to report what looks like routine/regular symptoms. Unfortunately, it’s also really good at tricking your doctors. After several visits and despite your concerns, your doctors could become so frustrated that nothing serious is obvious, they might even start to think it’s all in your head. This is exactly what Neuroendocrine Cancer wants, it’s just getting started.

One particular type of NET has a wicked trick up its sleeve.  This one will over-secrete a hormone called Serotonin which can often cause fibrosis in your abdominal area, potentially causing obstructions and damage to major organs and blood vessels.  It’s not finished though, it will also try to introduce fibrosis to the right side of your heart causing more life threatening issues. In addition to common symptoms of flushing, this type and others will also make you feel weak, fatigued, pain, agitated, anxious, dizzy, nauseous, jaundiced, acid reflux, skin irritation, anemic, lose weight and give you heart palpitations.  It’s a real Witch’s Brew of symptoms and living with it is often not easy.  Its main trick is to prevent you from being correctly diagnosed and it’s pretty good at it.

However, it has a ‘finale’ trick.  Neuroendocrine Cancer actually wants to kill you, and if it’s left to plough its relentless path throughout your body, that’s exactly what it will do, slowly but surely. 

It’s not just slow and scary, it can also be deadly. Spread the word and help save a life.

If you are suspicious you have Neuroendocrine Cancer but not yet formally diagnosed, you may appreciate this article.

Thanks for reading

Ronny

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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

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 to some of my blog posts to add context and detail in patient speak. The list comprises articles which were published in medical news media and for which I received alerts.  It does not comprise the entire schedule of NANETS 2017. I may add more to the list if other relevant and interesting articles are published downstream.

Please note:
Some of the output from the conference is in ‘study form’ and has not yet been published as peer-reviewed data (important notice to readers).

NANETS to Bring All Specialties in the NETs Community Together for 10th Annual Symposium

Interview with Michael Soulen MD.  Nice introduction.

https://goo.gl/tMT6KS
Location of Neuroendocrine Tumors in the Small Bowel Does Not Affect Survival

 

https://goo.gl/zf9k9j
Diagnosing and Treating NET-Related Diarrhea

 

Incorporated into my Diarrhea article – https://goo.gl/PwsXmX
Emerging Therapies, Biologic Discoveries, and Improved QoL on Horizon for NETs

 

https://goo.gl/p4cCyd
Retrospective Database Analysis Studies Somatostatin Analog Usage in NETs

 

https://goo.gl/KWM4p7
Regional Lymph Node Involvement and Outcomes in Appendiceal Neuroendocrine Tumors: A SEER Database Analysis. https://goo.gl/vfF4DA
Personalizing Therapy With PRRT and Improving Imaging With SSTR-PET Brings Novel Options to NETs Landscape

(new term SSTR-PET generically meaning any PET scan using somatostatin receptors), e.g. Ga68 etc.

https://goo.gl/s8sked
PFS and OS After Salvage Peptide Receptor Radionuclide Therapy (PRRT) with 177-Lu[Dota⁰,Tyr³] octreotate in Patients with GastroEnteroPancreatic or Bronchial NeuroEndocrine Tumours (GEP-NETs) – The Rotterdam Cohort https://goo.gl/yZ56YZ
Molecular Classification of Neuroendocrine Tumors: Clinical Experience with the 92-gene Assay in >24,000 Cases https://goo.gl/aqgfRf
Neuroendocrine Tumors: A Patient Survey

“Regarding their biggest challenges, patients reported fatigue as their biggest challenge followed by diarrhea, sleep disturbances, and pain.”

https://goo.gl/qEeNRM
Phase III Trial Needed to Confirm Clinical Benefit of Cabozantinib in NETs

 

Incorporated into my Cabozantinib article – https://goo.gl/mR2yFT
QOL Improvements in NETTER-1 Phase III Trial in Patients with Progressive Midgut Neuroendocrine Tumors. (I think this is well-known but no harm in repeating it!) https://goo.gl/UmKsFi

 

The full link to all poster abstracts for NANETS 2017 can be found here

Thanks for reading

Ronny

Hey Guys, I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

My treatment is a pain in the butt!

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This header is a bit ‘tongue in cheek’ (….did you see what I did there?)  I’m very happy to have this treatment every 4 weeks – I can think of far worse scenarios.  When I was first diagnosed, the dreaded word ‘Chemo‘ was discussed.  Actually, Chemo isn’t particularly effective in treating Neuroendocrine Cancer, although I’ve heard of cases where it has made a difference.

Today’s letter is ‘L’ and there are a few.

Lanreotide

This is currently my mainstay treatment and I look forward to it once every 4 weeks.  It is injected ‘deep subcutaneous’ in the upper outer quadrant of the buttock.

Prior to my diagnosis, I was a tad squeamish when it came to injections, even the smallest would make me cringe and I couldn’t bear to watch any needle pierce my flesh! Nowadays, as a daily self injector (see earlier blogs), I no longer have a fear of injections. However, the Lanreotide is the biggest injection I’ve ever had.  It’s not so much the length but the bore as the drug has a certain viscosity.  

The main job of the drug is to inhibit the secretion of dangerous levels of specific hormones from the remaining neuroendocrine tumours, wherever they might be, whatever size they are.   For more detail on this see ‘Does my flush beat yours’ published on 6 May 14. 

Is it a pain in the butt?  Not really, you can feel it go in and you can feel the release of the drug but nothing to worry about.

Check out my experiences with Lanreotide here.  Check out the differences between Lanreotide and Octreotide here.

Liver

One of the main sites for secondary tumours in many cancers is the Liver and this is the case with many types of Neuroendocrine Cancer – if the cancer cells pass into the bloodstream, the liver is a likely place for them to settle. Your liver is the hardest working organ in your body—it acts as a filter, picking up and then removing the toxins from your body and keeping your internal organs running smoothly.  If it isn’t working properly, you’re in trouble.   Fortunately, liver surgery is an effectively way to debulk NETs

Lymph Nodes

Everybody has hundreds of small oval bodies that contain lymph.  Lymph nodes act as our first line of defence against infections and cancer.  Unfortunately with cancer, they very often need to be removed to prevent it spreading further.  I have had a few naughty ones removed including a chain of bulky ones from my abdominal mesentery and over a dozen from my left armpit and collar-bone areas.  

 

Thanks for reading

Ronny

Hey, I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Check out my Podcast (click and press play)

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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