January, 2017 - Ronny Allan - Living with Neuroendocrine Cancer

27Jan 2017 by Ronny Allan 2 Comments

Endoscopy for NETs – taking the camera to the tumour

Awareness, Living with Neuroendocrine Cancer

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 and the anal route is called a Colonoscopy (or a reduced version called a Sigmoidoscopy). An endoscope can also be inserted through a small cut (incision) made in the skin when…

25Jan 2017 by Ronny Allan 5 Comments

Road ahead closed – Bowel Obstructions

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Treatment

OK - we've gone through diagnosis; we've gone through treatment and now we need to live with the consequences of cancer and its treatment. Not a day goes by when I don't feel some twinge or some minor pain, and I think 'what was that?'. Fortunately, many things can just be day-to-day niggles or in my case, the perils of getting older! The natural tendency is to think your cancer is causing these things.... easy to say, but very often not easy to prove. However, for Neuroendocrine Tumour (NET) patients who have had surgery, anything that seems like a bowel obstruction is quite a scary thought (I suspect this is also an issue for other cancer types). In fact, even before diagnosis, a bowel obstruction can be how the condition is…

21Jan 2017 by Ronny Allan 1 Comment

Clinical Trial – Cabozantinib for Neuroendocrine Neoplasms

Clinical Trials

What is Cabozantinib?Cabozantinib is an oral drug which works by blocking the growth of new blood vessels that feed a tumour. In addition to blocking the formation of new blood cells in tumours, Cabozantinib also blocks pathways that may be responsible for allowing cancers cells to become resistant to other "anti-angiogenic" drugs. It is a type of drug called a growth blocker. Cabozantinib has been studied or is already in research studies as a possible treatment for various types of cancer, including prostate cancer, ovarian cancer, brain cancer, thyroid cancer, lung cancer, and kidney cancer. During my research, I found that it has a connection to Medullary Thyroid Cancer (MTC) which is a type of Neuroendocrine Cancer, frequently associated with Multiple Endocrine Neoplasia (MEN). Cabozantinib, under the brand name of 'Cometriq'…

18Jan 2017 by Ronny Allan 5 Comments

Theranostics for Neuroendocrine Cancer – A Find and Destroy Mission

Awareness, Clinical Trials, 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…

17Jan 2017 by Ronny Allan 18 Comments

Neuroendocrine Cancer: Nodes, Nodules, Lesions (and false alarms!)

Living with Neuroendocrine Cancer, Survivorship, Treatment

A fairly common disposition of Neuroendocrine Neoplasms is a primary with associated local/regional secondary's (e.g. lymph nodes), and often with liver metastases. Technically speaking, the liver is distant. However, many metastatic patients appear to have additional and odd appearances in even more distant places, including (but not limited to) the extremities and the head & neck. Certain things are known about the behaviour of Neuroendocrine Neoplasms (NENs) (a term for Neuroendocrine Tumours and Neuroendocrine Carcinoma) and specialists will be analysing many factors when working out the type of NEN and how it might behave. This is useful in cases of unknown primaries as it can give them clues to the possible location(s). Read more about these issues in my article "Needle in a Haystack".How does cancer spread? In addition to…

14Jan 2017 by Ronny Allan 7 Comments

Surgery for Neuroendocrine Neoplasms – to cut or not to cut?

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Reviewed and edited 26th September 2021Surgery can sometimes be a tough call (......to cut or not to cut?)It is an area where I have some sympathy for physicians and surgeons who sometimes have tough decisions to make. Surgery is risky, particularly where people are presenting in a weak condition, perhaps with very advanced disease, secondary illness and comorbidities. I also suspect age is a factor (I was surprised to find myself considered 'young' at 55). Physicians and surgeons need to weigh up these risks and the consequences of the surgery against a 'watch and wait' or alternative non-surgical approach. This would normally be discussed via a 'Tumor Board' or Multi-Disciplinary Team (MDT) meeting. However, and although imaging helps, the situation is not really 100% clear until the surgeon 'gets inside'.…

04Jan 2017 by Ronny Allan 4 Comments

Does your body now have an extra organ? The MESENTERY

Living with Neuroendocrine Cancer

One of the very first words I heard at diagnosis was the word "Mesentery". In the news today is the announcement that is now might just be a new organ following accepted findings from research conducted in the University of Limerick Ireland. I always knew it was something which held the small and large intestines in place within the abdomen so like many others, I just thought it was some kind of membrane type structure and I also knew there was some kind of interaction with the peritoneum, another word which I was to become familiar with. This is an important area for NET patients as many will have mesenteric involvement in their disease. I've read reports of a primary mesenteric tumour although it's mainly a site for secondary disease (metastasis). It's no surprise…

01Jan 2017 by Ronny Allan 3 Comments

Newsletters

Hi NETworkers! Welcome to my second 'community' newsletter, the monthly summary of NET news in Dec 2016, views and ICYMI (in case you missed it!). December was a particularly special month. For the previous 3 months, I had been busily working behind the scenes and on my various social media presences to put on a good show for the 2016 WEGO Health Activist Awards. This paid off and I won the Best in Show 'Community' category in addition to being shortlisted as one of 5 finalists in the blog category. The community award was special because it means we all won the award as a part of this 'Community'. I've picked up a whole new bunch of friends outside the NET world bringing much-needed exposure to NET Cancer. I had a quiet week resting before I…