Living with Cancer – Worrier or Warrior?
If you only believe what you see on social media, you would probably classify cancer patients into two main groups, warriors or worriers. I guess people have, or adopt, these traits from their cancer experience but I suspect many people are simply 'wired' that way. I also believe there are many people who have a bit of both, perhaps slanting to mostly warrior or worrier, I mean who doesn't worry about a single thing? However, the extent of worrying can often have a negative effect on quality of life. You're not going to stop worrying by simply reading this article…
Neuroendocrine Cancer: turn surveillance into a positive
It's hard to be positive when you don't know how you're doing. The only way to know how you're doing is to get professional surveillance. This is precisely why I see getting surveillance (scans and other imaging, tests, etc) as a positive. Even if something isn't quite right, at least you know, your doctors know, and they can watch it or do something about it. They simply can't do that if you're not getting surveillance. This is precisely why it's a positive thing, i.e. if you don't get it done, you don't know how you're doing - that is a more…
Understanding your Somatostatin Receptor (SSTR) PET/CT Scan Results
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…
No Fear or Know Fear?
Edit: This article was written in 2015. Since then, I have moved to 12-month surveillance periods. I also changed the title as we are all different. The article drew in a lot of non-NET people who were attracted by the original title. It did spread a little bit of awareness but I guess the dozens of bunjee jumpers and other dangerous sports types quickly left when they found out it wasn't about either the famous sports clothing shop or jumping off large structures with NO FEAR! The Original ArticleIt's that time again, every 6 months I need some checks. I've done…
I’m only as good as my last scan
"I'm only as good as my last scan". I once received this comment in response to one of my posts. I thought it was a very pragmatic thing for someone to say. A NET patient under surveillance has regular tests at determined intervals but the one that is most likely to spot disease progression, stability or regression is a scan. Markers such as (say) Chromogranin A (CgA) or 5-HIAA are clearly useful (for me) but in an ongoing surveillance scenario, they alone would not be used as a firm declaration of progression, stability or regression. Every picture tells a story…
Scanxiety – I just don’t get it!
OPINION ...... but read the post before you form your own based on the post title The internet is full of blogs and articles about a subject which is described as 'scanxiety' - the joining of the words 'scan' and 'anxiety'. I also noted some authors using the words 'scanxiety' and 'anxiety' interchangeably which in my opinion is clearly wrong as by definition it is only an anxiety about scans and I guess incorporates the results of scans. Not that we need separate names - at the end of the day, it's just anxiety regardless of whether it is waiting…
Living with cancer: 5 tips for facing things you can’t control
I'm wired not to worry too much about something I cannot control. For example, I automatically ignore any concerns about being inside an imaging device and then having to wait for the results to come through. For me, I need to get the scan and I cannot control the results. The results will be what they will be, and I will react accordingly when I know them. I once wrote an article called "Scanxiety, I just don't get it". In hindsight, perhaps I was a bit harsh as not everyone is wired like me. However, perhaps presenting the reasons for…
New PET findings after COVID-19 vaccination: Keep Calm and Carry On?
After a few months of introducing C-19 vaccines, many cases of false-positive lymph nodes were reported on nuclear PET scans, some of which led to unnecessary biopsies and unnecessary worry for the patients concerned. According to Mayo Clinic, the positive nodes were on the same side as the vaccine shot in the cases where the injection site was known. Mayo added that some cases had uptake in the deltoid muscle, which is normally where vaccine injections are given, leading to increased suspicion of false positive in cases where uptake was in both deltoid muscle and axillary lymph nodes (armpit). At…