Sorry too late, I’m metastatic and around 50% of patients will be at diagnosis (so I’m not alone!). It’s very SNEAKY!
I mean, I look really good, I look really well, but you should see my INSIDES
I really didn’t know what to make of this issue at diagnosis, although I did know the aorta was pretty important! Fortunately, I had a surgeon who had operated on many NET patients and has seen this issue before. After my first surgery, he described it as a “dense fibrotic retroperitoneal reaction encircling his aorta and cava (inferior vena cava (IVC))”. My surgeon was known for difficult and extreme surgery, so as part of the removal of my primary, he also spent 3 hours dissecting out the retroperitoneal fibrosis surrounding these important blood vessels and managed 270-degree clearance. The remnant still shows on CT scans. Some of the removed tissue was tested and found to be benign, showing only florid inflammation and fibrosis (thankfully). That said, the abstract papers above have led me to believe that my retroperitoneal fibrosis is clinically significant. In fact, in 2018, I spent 3 months worrying about some of it growing into the reach of important vessels (still monitored).
There are many hormones involved with Neuroendocrine Cancer which is unique in that different types can result in elevated levels of different hormones, often more than one is involved. Serotonin has caused fibrosis in my retroperitoneal area and is currently threatening important vessels. I don’t really need that right now!
I was showing symptoms of a Neuroendocrine Cancer syndrome known as Carcinoid Syndrome (currently) such as flushing and diarrhea and fatigue was probably there too, but these were thought to be something else or ignored (by me). I don’t suffer too much nowadays other than side effects of the disease or the treatment I’ve had or received. However, I know from speaking to many patients that the effects of the various syndromes associated with Neuroendocrine Cancer can be pretty debilitating and oppressive to quality of life.
These syndromes can be so strange and so weird, they can be very difficult for patients, nurses, and doctors to treat. They can be a real ‘witch’s brew’.
But I need constant surveillance, it’ll keep me alive.
As if I needed it. That said, I learned to live with that and am now my perfect weight for my age and height. However, for some weight loss presents a risk.
Another pill for life. I have a left-sided thyroid lesion and my treatment also messes with my hormone levels. All NET patients need to keep an eye on this issue
No thanks for pushing me into pre-diabetes (twice so far). Most likely due to treatment.
I loved my job but not if it was going to kill me. I made my own decision based on how I could survive in a financial sense. Made easier as I was only 6/7 years from retirement, but I guess I’m one of the lucky ones despite the fact I took a big hit on the income going into my bank account.
The truth is that many people still need to work whilst struggling with paying bills in addition to the side effects of cancer and its treatment. Getting some form of financial assistance from the government is not a done deal.
Neuroendocrine Cancer is a very expensive disease to treat.
This is fast becoming a big issue regardless of country and regardless of the healthcare system in place. However, in privately funded healthcare, it can be exacerbated by the level of insurance coverage. Read more about financial toxicity for cancer patients which is a growing problem worldwide.
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional. Some content may be generated by AI which can sometimes be misinterpreted. Please check any references attached.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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