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 Surgery 3: my distant lymph nodes

Neuroendocrine Cancer Surgery 3: my distant lymph nodes

Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email "An unusual disposition of tumours" A fairly common disposition of Neuroendocrine Neoplasms is a primary with associated local/regional secondary's (e.g. lymph nodes), and often with liver metastases for late diagnoses. Apart from the primary tumour invading nearby tissue/organs, the most common spread is the lymph nodes, these can take you from a localised Stage 1 to loco-regional Stages 2 and 3. Often the term distant spread infers metastatic disease (stage 4) to the liver but I had some lymph nodes 'misbehaving' much further away than that. After my first nuclear scan (In-111 Octreoscan) during my diagnostic workup in Jul-Aug 2010, two areas lit up - left axillary nodes (armpit) and…
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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
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email OPINION - nothing in here should be taken as advice from the author. On paper, surgery remains the only potentially 'curative' option for Neuroendocrine Tumours (NETs) but there are stage, grade and anatomical constraints to that opinion. Many people get 'twitchy' about any inference of the 'C word' (cure) but our most eminent NET specialists use the term frequently including in the major treatment guidelines. I use the word 'curative' with some reservations because for many who are diagnosed at an advanced stage, surgery will not cure but will debulk or cytoreduce as much tumour as possible in order to palliate symptoms and improve quality of life. This is a…
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Neuroendocrine Cancer – my liver surgery

Neuroendocrine Cancer – my liver surgery

Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email [caption id="attachment_5420" align="aligncenter" width="450"] Keyhole surgery[/caption]From day 1 of my diagnosis, I knew my liver was going to need some attention but I had always known that total removal of all tumours would not be possible - the diagnostic scan confirmed I had incurable disease. This critical organ did in fact produce the biopsy confirming Neuroendocrine Cancer. The early scans indicated multiple liver lesions and an Octreotide scan reported several quite avid isotope activity.However, as you can see from my clinical history, they first stabilised my syndrome via daily Octreotide so my tumours were subdued ready for major surgery which took place Nov 2010 - I wrote about this as…
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My Neuroendocrine Cancer Surgery – a patient experience (part 2)

My Neuroendocrine Cancer Surgery – a patient experience (part 2)

Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email   The surgery on 9 Nov 2010 had lasted 9 hours but according to my surgeon Mr Neil Pearce (on the left on the picture below), I tolerated it well.  My first week was quite tough and I outlined how this went in my blog 'patient experience' part 1.  If you've not read it yet, please click on this link before reading any further. By this stage of my stay, I'm now minus most of the temporary tubes attached to my body, a good sign of recovery. The one which seemed to offer me the greatest freedom when removed, was the urine catheter. It doubled my speed down the hospital corridor during my daily exercises.…
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Neuroendocrine Cancer Surgery – Small Intestine NET, a patient experience (part 1)

Neuroendocrine Cancer Surgery – Small Intestine NET, a patient experience (part 1)

Survivorship, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email  This is a personal story but a more technical description of Small Intestine surgery for a NET can be found here.8th - 26th November 2010Memories of my 18 day stay in hospital from 8 - 26 Nov 2010, are not only reminding me of how important that particular treatment was to be, but also how surreal it felt at the time. Some of it is still a blur, particularly the early days where the morphine was in control.  For many NET patients, surgery can be a mainstay treatment, even for those with metastatic disease.  In fact, I now know from my own research that NETs is one of a small…
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Surgery for NETs – Chop Chop

Surgery for NETs – Chop Chop

Treatment
At the end of 2014, I was feeling pretty good celebrating 4 years since my first 'big' surgery in 2010. It prompted me to write an article Surgery - the gift that keeps on giving. In that particlar article, I really just wanted to say I was grateful for the early surgical treatment and as I was just about to spend another Christmas with my family, I was reminiscing what a wonderful gift it was at the time. Other than some detail of the surgery, I didn't get too technical, I just wanted to generate a thankful and festive mood. However, a recent private message from a subscriber prompted me to study the current benefits of surgery for Neuroendocrine Tumours (NETs) in more detail just to ensure my understanding was still in line with best practice. …
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Surgery – the gift that keeps on giving

Survivorship, Treatment
As we approach NET Cancer Day, my thoughts return to 9 Nov 2010. I had been diagnosed with metastatic Neuroendocrine Cancer a few months before and told it was incurable. However, with 'debulking' surgery, my Oncologist said my prognosis could be significantly improved. I now know from my own research that Neuroendocrine Tumours are one of a small number of cancers for which surgical debulking confers some survival advantage.  Another term used at the time was 'cytoreductive' surgery which means 'to control symptoms and improve survival by removing or destroying disseminated tumour metastases'.  Less neuroendocrine tumours should result in lower secretions of specific hormones which in turn should decrease the effects of Carcinoid Syndrome from which I was suffering at presentation.  I'm still alive and kicking and don't feel too…
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