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 type of appendiceal cancer. With NETs, surgery is a topical subject as not everyone will be able to have it and some might not even need it. Check out my blog “to cut or not to cut“.
I suggested in a previous blog that ‘Surgery is a gift that keeps on giving‘ 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 were removed at a later date including a 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 primary (pNET) have to undergo. These include the ‘Whipples’, ‘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.
Although there are long term side effects from my surgery, I’m gradually adjusting my lifestyle to cope (a work in progress, even since diagnosis in 2010!). This is mainly through (not too drastic) diet adjustments and nutritional level surveillance. 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 monthly ‘Lanreotide’ since December 2010 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 less common 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.
When I was drafting this blog a couple of years ago, I had been carefully watching the story unfold about the death of respected ESPN anchor Stuart Scott from an “appendiceal cancer”.
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. It’s amazing how quickly and ‘assumption’ can circulate to thousands of people in a very short space of time. I read conflicting mainsteam media articles and social media posts; some referred to the disease as ‘gastrointestinal carcinoid’ and others insisted that it was unrelated to NETs. As the dust settled, it appears his appendiceal cancer was not a Neuroendocrine Tumor.
On the same subject, many NET patients claim Audrey Hepburn was a NET Patient but this is not accurate, she had PMP.
Back to the Mother of all Surgeries story ………
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 NETs.
The UK is very well equipped to deal with PMP and HIPEC with two centres in Basingstoke and Manchester renowned worldwide as treatment centres for this rare condition.
You can read more here about this amazing story where the patient had 9 organs removed.
And another here – “9 organs removed”
And another here – “tumour weighing one stone”
Thanks for reading
7 thoughts on “The Mother of all Surgeries”
Great post. I’m glad you were able to get surgery! 🙂 Looks like that may not be an option for me. I’m looking into immunotherapy. I know the Caring for Carcinoid foundation just got a grant so, maybe there will be some enlightening information. Maybe I can find a clinical study?
best of luck with that Ed, hopefully you’ve not totally given up on conventional treatment that may also be out there? If you’re keen on the immunotherapy side, perhaps a call to Caring for Carcinoid who are running the research project, they might be able to advise more? My mission is to break out of the NET bubble (where everybody knows about it) into the wider community. More likes/ratings/comments/shares and follows will help. Also, I’m starting to see more external hits on my Facebook site http://www.facebook.com/NET-Cancer-Blog-476922399112723 I need to increase my ‘Likes’ so I can break out to the wider community on that media too. Help sharing these links is much appreciated
I will be linking to your site….just haven’t done it yet. 🙂 No, I haven’t given up on conventional therapies but it seems that they have given up on me. I’ve been through a number of chemo drugs, surgery has been ruled out because the docs are not interested in doing on me because it is spread so far. PRRT might be an option but, it seems that it only works on small tumors and can only be obtained in Europe. Did I miss anything? I think that immunotherapy is the only thing left. Am I right? 🙂
Yes, unfortunately. 🙂
Wow I cannot imagine having that surgery, she must be feeling a lot lighter poor thing. I had a whipples last summer but unfortunately couldn’t remove tumour as too close to portal vein. So going through chemo to shrink it, fingers crossed. I was pregnant when they diagnosed me too so baby came 10 weeks early via emergency c section then 2 weeks after the dreaded whipples. Aim is to shrink and remove again. Hideous recovery but if it gets result I want I’ll get through it x
Good luck with your treatment. You’ve been through a lot. Many NET patients have to live with abdo issues but I guess this lady has got more than most!