I’ve been so busy with house, family and cancer campaigning activities but still found time to continue my research into Neuroendocrine Cancer. Why do I do this? Whilst I have a great medical team, I’d also like to be my own advocate and this means understanding what medical people tell me! Moreover, I don’t want to be a passive patient, I want to be an active advocate for my own health. I found this infographic on the internet which sums up my own views nicely (special thanks to Know your Own Health Ltd).
Passive vs Activated Patient
I actually enjoy researching neuroendocrine disease and I’d like to think it was all in one book somewhere – this simply isn’t the case! From what I’ve read in the past 4 years, I suspect the ‘all encompassing’ book would need to be about 10 feet thick. I also suspect I’m still at the tip of the iceberg! I don’t have room in my house for a 10 feet thick book, so I have to rely on ‘Professor Google’ a lot. I learnt early on to be careful not to believe everything I find on the internet and blogged about this before: http://wp.me/p4AplF-9i
Once you have been researching NETs for some years you learn which are the best sites and what is the sort of thing to ignore. This wisdom came in handy recently when I was studying neuroendocrine tumours of the thyroid – apparently rarer than hen’s teeth. To understand the subject, I also researched the Thyroid (in the anatomical sense) and then all types of Thyroid Cancer. It didn’t take long before my head was hurting but it will be the subject of a future blog post.
One of the issues with Neuroendocrine Cancer is the diversity of locations and symptoms in terms of the anatomy and presentational difficulties. Neuroendocrine tumours (NETs) are rare and they present complex challenges to diagnosis and treatment. Even in the case of metastatic spread to the liver and beyond, there are some important differences in the nature of these tumours compared to gastrointestinal and pancreatic cancers. Many patients are first thought to be suffering from other ailments before finally being diagnosed with Neuroendocrine Cancer, thus delaying their treatment. It’s not just confusion over vague symptoms leading to misdiagnosis of common ailments, I even found a story of someone who had been misdiagnosed with Pancreatic Cancer and been given 12 months to live. One year later, the person asked a doctor friend why he was still alive and feeling OK which led to further checks and the discovery that this person actually had a Neuroendocrine Tumour of the Pancreas – a less aggressive form of cancer (normally) which was treatable and offered a better prognosis. Amazing story but this person’s treatment was delayed by 12 months. NET cancer in any part of the body is best left to Neuroendocrine experts (in my opinion).
One of the most amazing things I’ve discovered this year is the advances in treatment modalities on offer for NET patients. One in particular which made me say “wow” is Intra-Operative Radio Therapy or IORT for short. IORT delivers a concentrated dose of radiation therapy to a tumour bed during surgery. This advanced technology may help kill microscopic disease, reduce radiation treatment times or provide an added radiation “boost”. IORT allows higher effective doses of radiation to be used compared to conventional radiation therapy. It’s not always possible to use very high doses during conventional radiation therapy, since sensitive organs could be nearby. IORT also allows doctors to temporarily move nearby organs or shield them from radiation exposure.
IORT Machine
Although it’s unlikely I will ever be offered this treatment (it’s normally for those in the early stages of treatment), I’m pleased to see this sort of thing coming online for newly diagnosed patients who will be given more focussed treatment early on. This will probably offer better survival rates and longer term prognosis for NET sufferers. At the moment, this treatment is not available in the UK for NETs but read on ………
There are plans to install a fixed IORT in a new bunker theatre in Southampton, due to be built in 2016-17 (using NHS funding). However, PLANETS Charity is kick-starting this project in advance through the leasing of a mobile IORT radiotherapy machine, the deployment of which is fast approaching. This is likely to be one of the first deployments of this technology in the UK. Nice one PLANETS! Check out this extraordinary bunch of people here:
https://twitter.com/PLANETSCHARITY
https://www.facebook.com/pages/PLANETS-Charity/122088044556397
Ronny
follow me here: https://twitter.com/RonnyAllan1
