20th November 2010 – feeling perkier

20th November 2010 – feeling perkier

Patient Advocacy, Survivorship, Treatment
Every year I cast my mind back to this time in 2010. Diagnosed on 26th July that year, I was in hospital from 8th - 26th November, an extended period due to complications.  At that point, I had been keeping my diagnosis within close family and friends and my manager at work.  People at work and my wider list of friends were probably wondering what was going on with me.  Cleary, I let my emotions slip by posting this on Facebook on 20th November 2010. Perhaps this was my way of opening up.  That was 11 days after the surgery, so I guess it took a while to feel almost normal. I had a big surgery! I had some issues along the way. But after 10 days I had got through…
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Small intestine, large surgery

Small intestine, large surgery

Patient Advocacy, Treatment
My own experienceAt my diagnostic consultation, the Oncologist told me I had Stage 4 metastatic Small Intestine NET (SI NET). He also told me that surgery would almost definitely be on the cards and would be referring me to an experienced surgeon in a different hospital for assessment. I was assured this surgeon was one of the most experienced in the south of England for NETs. This was before the current multi disciplinary team was setup, but it did all seem so very organised and I felt comfortable, albeit apprehensive. Worth pointing out that surgery is not normally offered in cancer at Stage 4 but the slow growing nature of most NETs allows for some leeway here.  Statistics indicate that around 50% of SI NET present as metastatic cases, I'd…
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Neuroendocrine Cancer Syndromes – Clinical Esoterica

Neuroendocrine Cancer Syndromes – Clinical Esoterica

Awareness
One of the key awareness messages for Neuroendocrine Cancer is the hormonal syndromes that can often accompany the diagnosis for many people.  As it's a difficult disease to diagnose, many people struggle with these syndromes for some time before formal diagnosis of Neuroendocrine Cancer.  Some continue to struggle after. The cancer can often be uncannily quiet, but the tumours can be 'functional' and over-secrete certain hormones to add or introduce symptoms which mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart disease and Asthma.   In addition to common symptoms of flushing and diarrhea, others include generally feeling weak, fatigued, pain, agitated, anxious, dizzy, nauseous, acid reflux, skin irritation, anaemic, weight loss, weight gain, low blood sugar, high blood sugar, heart palpitations, headaches, sweating, high blood…
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Neuroendocrine Cancer: Fibrosis – an unsolved mystery?

Neuroendocrine Cancer: Fibrosis – an unsolved mystery?

Living with Neuroendocrine Cancer, Treatment
What happened to me?Since I was diagnosed in 2010, I've always known I've had a fibrosis issue in the retroperitoneal area, as it was actually identified on my very first CT Scan, which triggered my diagnosis.  Here's how the radiologist described it - "There is a rind of abnormal tissue surrounding the aorta extending distally from below the renal vessels. This measures up to 15mm in thickness".  He went on to describe that "almost certainly malignant".  The second and third scans would go on to describe as "retroperitoneal fibrosis" and "a plaque-like substance".  Interestingly the fibrosis itself does not appear to 'light up' on nuclear scans indicating it was not cancerous (see below).I really didn't know what to make of this issue at diagnosis, although I did know the aorta…
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“What are you doing this afternoon”

“What are you doing this afternoon”

Awareness
"Don't ignore symptoms because you're too busy at work".   I had what was really an incidental diagnosis in 2010 that took around 2 months to be diagnosed from me saying "I think I've lost some weight".  This is actually crazy because I had metastatic (Stage IV) cancer and how can cancer get to that stage without any hints?  Well, often that's what happens with Neuroendocrine Cancer - it's a sneaky little disease.  I didn't hear it coming but there were a few clues.  I'm putting that down to my own intransigence, doctors need you to tell them about your issues. However, in 2021, I'm still here. https://youtu.be/n17KUCiFaqU?t=7On 8th July 2010, I was sat in front of a secondary care consultant. I asked specifically for this consultant for two reasons, firstly, he carried…
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Surgery for Neuroendocrine Neoplasms – to cut or not to cut?

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'.…
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Does your body now have an extra organ? The MESENTERY

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…
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Serotonin – the NET effect

Serotonin – the NET effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email [caption id="attachment_16272" align="aligncenter" width="640"] Credit background picture: A team of researchers from Case Western Reserve University School of Medicine have used high-powered microscopes for the first time to view serotonin activating its receptor[/caption]This is an opinion postBackgroundI'd never heard of Serotonin until I was diagnosed with Neuroendocrine Cancer in 2010. It is frequently discussed, often with contrasting views from the respondents. One common assumption/question is that it is responsible for many things that can go wrong with Neuroendocrine Cancer patients who have serotonin-producing tumours. To a certain extent, that's true but statement such as "it's the hormones" is an easy assumption to make; or an easy answer to give in…
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Surgery is risky but so is driving a car

Surgery is risky but so is driving a car

Survivorship, Treatment
  I enjoyed reading an article written by Dr Eric Liu entitled The Complications of Surgery. In his article, Dr Liu, himself a surgeon, explains that surgery comes with risks and patients should be made aware and be able to discuss these risks with their doctors. This got me thinking about my own experience which goes back to the autumn of 2010 when I first met my surgeon. At that time, there were a few articles about whether surgery or 'biochemistry' was the best treatment for certain types, grades and stages of Neuroendocrine Tumours (NETs). To some extent, these debates continue, particularly for pancreatic NETs. Surgery for certain NETs in certain scenarios is a controversial issue for NETs - as outlined in this article - to cut or not to…
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