My plan for this week’s blog was to continue with a surgery theme using the story of a lady who had what was described as the “Mother of all Surgeries” after being late diagnosed with a very rare and advanced appendiceal cancer. I had a draft in outline before Christmas ready to update and publish early Jan. However, I’ve been carefully watching the story unfold about the death of respected ESPN anchor Stuart Scott from cancer and decided to incorporate a quick paragraph on that on the basis there is by coincidence, an appendiceal link.
The media presented a confusing picture about the exact type of cancer Stuart had and some of you will have seen the debate on social media. I read conflicting articles and social media posts; some referred to the disease as gastrointestinal carcinoid and others insisted that it was unrelated to carcinoid/NETs. I’m not intending to repeat the debate here but l leave you a link provided by my friends in Caring for Carcinoid which explains Cancers of the Appendix. http://www.caringforcarcinoid.org/news/neuroendocrine-cancer-and-stuart-scott%E2%80%99s-battle-rare-appendiceal-cancer
I recently suggested in a blog that ‘‘ and that is probably true for many cancer survivors. However, I then added that NETs were one of a small number of tumours for which surgical debulking can provide some survival advantage for those with metastatic and incurable disease. In my own case, I’ve had my primary removed as part of a small intestine resection and a right hemicolectomy ‘en bloc’ – plus a bunch of mesenteric and retroperitoneal ‘stuff’. Other metastases removed include 66% liver resection (which included an opportunistic removal of gall bladder for treatment side effect control), 9 lymph nodes removed from my left axillary area (armpit), 5 lymph nodes removed left clavicle area and two hotspots are still under investigation. I’m now under constant surveillance but I’m doing OK and I intend to outlive my Oncologist 🙂
However, my experience would appear to be fairly straightforward when you consider the types of surgery some Neuroendocrine Patients with a Pancreatic NET (pNET) have to undergo. These include the ‘Whipple’, ‘Distal Pancreatectomy or ‘Total Pancreatectomy’. These are all long and complex operations which remove numerous organs or parts of organs – and no doubt there are variants of these for unusual scenarios. They are also used in the treatment of more common types of cancer involving the Pancreas (i.e. exocrine based).
Although there are long term side effects from my surgery, I’m gradually adjusting my lifestyle to cope (a work in progress, even after 4 years!). This is mainly through (not too drastic) diet adjustments. My other weapon is to learn as much as I can about my disease in order that I can learn how best to live with the side effects of both the cancer and the treatment. Despite the extent of my surgery (to date) and my cancer’s stage, I still consider myself fortunate to have been diagnosed earlier than the average for this disease (….sheer luck) and then had access to what some might describe as aggressive surgery shortly after. I suspect 4 years of ‘Lanreotide’ is also playing a big part.
My experience has given me the incentive to read a lot and occasionally I come across articles about cancer patients who have been treated surgically for very unusual cancers – even rarer than NET Cancer. One which recently caught my eye was a lady who had been diagnosed with Pseudomyxoma Peritonei (PMP). This is a very rare condition (1 in every 1,000,000) characterised by the presence of mucin-producing tumours (and the mucin) in the abdominal cavity. There are a number of possible origins of PMP, but the most common source is appendiceal (appendix) cancer. If you’re interested in learning more, further information can be found here: http://www.pmpcure.org/
I was totally amazed by the extent of the surgery the lady had to undergo and wondered how she was going to cope with the side effects. She was clearly an extreme case and many patients are caught early on and treated accordingly. They removed her appendix, large bowel, most of her small bowel, gall bladder, spleen, womb, ovaries, fallopian tubes and cervix as well as most of her stomach lining and navel. Her surgery was described as the “Mother of all Surgeries” and included a 90 minute ‘chemo bath’ (formally known as Hyperthermic Intraperitoneal Chemotherapy (HIPEC)). Interestingly she was originally diagnosed with IBS, a similar scenario to many NET patients. I was also struck by the similarities of some of the symptoms with those found in NET Cancer.
You can read more here about this amazing story: http://www.dailymail.co.uk/health/article-2874278/Cancer-patient-NINE-organs-removed-mother-surgeries-treat-one-million-cancer-misdiagnosed-IBS.html#ixzz3NxCmMjtc
thanks for reading!
Check out my Facebook site here: https://www.facebook.com/pages/NET-Cancer-Blog/476922399112723
On Twitter? You can ‘Follow’ me here: https://twitter.com/RonnyAllan1