Neuroendocrine Cancer – unexpected detours

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I’ve mentioned ‘luck’ a few times in the past month following some more ‘cancerversary’ milestones – these tend to make me reflect on my experience.  Even though I was metastatic at diagnosis, I think of myself as lucky on the basis that my tumours were found by ‘chance’, or to be more accurate, found following an innocuous set of circumstances.  Click here to hear me talk about my diagnosis.

As we know, Neuroendocrine Cancer can sometimes be very difficult to discover and diagnose. However, sometimes with a bit of luck or a chance event, it can be intercepted and can then often lead to a much better outlook for the person concerned.  But sometimes there is also a cost, and I don’t just mean financial (although that is also a very real problem).  Despite me thinking I had been lucky, the little suckershad burrowed their way into many places, and I now deal with those consequences following significant treatment to get rid of as many as possible.

With my blogging and advocate activity, I get to hear other people’s stories, some of which have tweaked my emotions from ‘man style leaky eyes’ to wide-eyed surprise and astonishment, but very occasionally with smiles.  I had one such exchange with Mary who subsequently agreed to let me use her story which immediately caught my eye because it not only triggered a wide range of emotions but made me reflect on the cost aspect I described above.

Mary’s is a lung NET patient, and her tumour was caught early.  Although it was a totally chance discovery, it was in really unfortunate circumstances. Her brother Dan was fighting leukaemia and needed a lifesaving stem cell transplant. During the checks for her suitability as a donor, the lung NET was discovered.  Clearly a very worrying time for Mary as she had gone to the hospital to try to save her brother’s life and ended up being admitted with her own cancer diagnosis and was therefore unable to take any part in the donation.  I cannot begin to imagine how that felt for the whole family.  Fortunately, Mary’s sister was also found suitable and was able to donate. Their brother later had a successful transplant but unfortunately his cancer recurred, and he passed away a short while later.

That’s an amazing albeit sad story but it invokes a wide range of emotions.  It’s also a very inspiring story about a family coming together in time of crisis.  Mary went to hospital that day to try to save Dan’s life and despite her own diagnosis, she still felt guilty that she was unable to fulfil that task.  However, before his passing, Dan let it be known that he must have gotten sick to save her life.  That’s a heart-warming thought – RIP Dan.

I’m very thankful to Mary who agreed to let me publish her story here. 

I’m very thankful to Mary who agreed to let me publish her story here.  It was actually featured in their local newspaper – you can read it here – Click here

I’d love to hear from others who had a lucky or chance tumour find.

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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.   

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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12 thoughts on “Neuroendocrine Cancer – unexpected detours

  • IBDMom

    My multifocal small intestine tumors were discovered during an exploratory laparoscopy which turned very quickly into a bowel resection! Why the exploratory lap in the first place? Because I had experienced months of steadily worsening digestive symptoms after a small bowel obstruction. The obstruction itself was resolved without surgery during a 5-day hospital stay, but symptoms started shortly after release from that hospital and essentially never went away. All imaging studies and 99% of labs had come back normal for months. I like to say that the only reason I wasn’t referred to a psychiatrist is that there’s no such thing as a psychosomatic small bowel obstruction.

  • I really enjoy your blog for its informative, positive outlook. Count me as another lucky diagnosis. I’ve always had some intermittent digestive issues. Last fall at my annual physical just before turning 65, I mentioned a recent episode and my primary care doctor referred me for a colonoscopy/endoscopy even though my last colonoscopy had been clean 3 years earlier. A pre-cancerous, sessile polyp was found in a tricky place in the colon near the ileum, so surgery was recommended to remove it. The surgeon ordered an ultrasound to check the gall bladder since digestive issues had been noted. Thank goodness he did! The gall bladder was fine, but tumors were seen on the liver and thus began my NETs journey. I had the same experience of technicians whispering and gathering around the screen during the ultrasound. You know something is not right when that happens! Non-functioning, well-differentiated, metastatic, neuroendocrine tumors (carcinoid), spread to the liver. I am now 4 weeks post surgery that removed part of the colon, primary tumors in the small bowel, mesentery, and ablation of a tumor in the left lobe of my liver. Now I have 6 small tumors remaining in the right lobe. Next will be meeting with my Oncologist for the next phase, sure to be somatastatin analogues, surveillance scans, and perhaps a run at those little buggers in the liver. I am thankful everyday that this was caught now. There are so many options for treatment and exciting new ones on the horizon. I am indeed lucky.

  • Patti

    I was “lucky” too. I’d had IBS-like symptoms for a couple of years and the GI doctor had brushed off anything serious after the scopes came out clean. I kept blaming my diet. Separately, my gynecologist and I decided on a hysterectomy after thinking about it for a couple of years (fibroid/polyps, nothing serious yet). The work-up prior to the surgery included a CT scan which turned up a tumor that turned out to be a NET. I’m on sandostatin now to which I’ve reacted very well. No side effects, no symptoms and the tumor is stable. I really do consider myself lucky and continue to be incredibly grateful.

  • My NETS tumours were first detected in a very unusual way. I had just arrived in China to spend a semester teaching English at a university in Dalian. In order to get my resident’s permit, I had to have a very thorough medical which included an abdominal ultrasound. There was a flurry of excited conversation between the medical technician and the translator who had accompanied me from the university when something unusual was detected on my liver. I was immediately sent for a CT scan and told that the results would be sent to the school. A few days later, when I arrived at work, the receptionist told me that she had good for me. While there was something on my liver, it was nothing to worry about and my resident’s permit had been issued. She did, however, suggest that I follow up with my own doctor when I returned to Canada. Thank goodness i followed her advice! After several amazing months in China, during which I gave very little thought to what might be lurking within me, I returned to Canada and shortly thereafter saw my family doctor for my regular annual check-up. I mentioned the “spots” on my liver and from there, the road to diagnosis was a quick one! Had I not had that ultrasound in China, who knows how much longer my NETS (five tumours in all) would have gone undetected.

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