Sorry to have been quiet for a while but I’ve been so busy with house, family and cancer campaigning activities. Additionally, I’ve been continuing 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).
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 (…..including on patient forums).
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 (or overseen by) Neuroendocrine specialists (in my opinion). However, had this guy done his own homework, he might have asked some key questions making his doctors at least think of some alternative scenarios. Food for thought?
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6 thoughts on “Passive patient or active advocate?”
[…] Of course patient advocacy is not just learning about your disease and spreading awareness, it’s much wider than that. For example it also includes knowing about patient rights, matters of privacy, confidentiality or informed consent, learning about the political and regulatory world, health-care providers, organisations of health-care professionals, and about medical and pharmaceutical research communities. I mainly keep tabs on these areas via twitter which can provide excellent ‘signposts’ into relevant websites and this supports my personal blog and Facebook activities. As I said above, the internet can be a dangerous place for the uninformed but if used carefully, it can provide a vehicle for those who wish to move from ‘passive patient’ to ‘active advocate’ (see my blog Passive patient or active advocate?) […]
I read the local press article about your visit to Westminster for the PLANETS event last month and have enjoyed visiting your blog.
You state in this post that you want to ‘be an active advocate for your own health’ and it certainly looks as if you are achieving that. I wanted to let you know about a national project to bring peer advocacy support to older people affected by cancer and their carers. Volunteers are trained to offer one to one face to face support in the community to those who for any reason are not in a position to be their own advocate. You can read the national blog here http://opaalcopa.org.uk/ and more details about the local service Dorset Macmillan Advocacy here http://www.helpandcare.org.uk/services/one-to-one-support/affected-by-cancer.aspx?n=f35
I emailed you Kathleen!
[…] I’ve gained my recent medical knowledge by carefully studying well respected websites and publications but I’m always very selective about which sites to trust – see blog Google is not a synonym for research. Through this process, you also learn who the specialists are and seek out their articles and publications. That’s not to say I fully understand everything I read or interpret in the right context! However, if you want to become your own ‘advocate’ or be a ‘powerful patient’, then knowledge is one of the things that can empower you! I have blogged before on patient engagement – see here Passive patient or active advocate? […]
Keep up the good work me old mate !