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Neuroendocrine Cancer Community

Sally’s NET story

Nov 10, 2017

As I trudged numbly from one unprofitable doctor’s appointment to another throughout 2007/8 I didn’t know that not  pinning down the reason for my increasingly severe bouts of pain and diarrhoea would nearly cost me my life. 

Crohn’s disease, coeliac disease, food allergies and IBS were all discounted; stress and the menopause were tactfully alluded to. I felt metaphorical pats on the head. Another middle-aged well worrier. In hindsight, it’s a horribly familiar story that could have ended badly. Then early in 2009 something showed up on a scan. By then it was almost too late. A few days before scheduled surgery NET’s added high drama to my miserable existence by blocking the blood supply to part of my gut. This was both painful and dangerous. Incipient gangrene meant a blue flashing light ride to the hospital where emergency surgeons swiftly whipped out  a substantial chunk of my digestive tract and installed a stoma.

Then came the diagnosis of ‘carcinoids’. Of course, I’d never heard of them.  

Back at home, the two years immediately after the emergency surgery were full of  re-adjustments for me and my shell-shocked family.

First came the physical adjustment of  juggling  a stoma and daily liquid feeds  through a tube in my chest (TPN) while still  healing from major surgery.  Happily, more surgery and the passage of time got rid of the stoma, the TPN and the sore abdomen (mostly). Next came the really hard task of mental and emotional adjustment to a  life blown suddenly to bits.  That was more difficult.

The drama didn’t stop with the removal of the primary tumours, but this time it came with a horribly strong sense of deja-vue. Even though the primaries were gone and the scars had healed, the galloping diarrhoea, creeping weight loss and  exhaustion remained. There were still intermittent crippling abdominal pains. Life was better but it wasn’t easy nor comfortable.  There was little in the way of formal support or information.  My sanity savers at this time were one shiningly wonderful endocrine nurse who went beyond the call of duty to support her NET patients, the perpetually comforting NPF and a local charity called Tenovus. Thanks, guys, you really saved my bacon. 

Then, some five  years after diagnosis,  luck stepped in again when true NET expertise entered  my life. I was given the right medication and specialist dietary advice to manage the diarrhoea. I was put on a fatigue management programme, referred to a cancer specialist clinical psychologist, and maybe best of all, my new consultant looked beyond the facile explanation of adhesions for the abdominal pains and diagnosed something else entirely.  A rather upmarket gastroscopic procedure called an ERCP sorted that one out and the abdo pains stopped dead.  

My quality of life took an immediate upturn, but even with this expert management it was more than a year before my daily life stabilised. 

So what have NETs taught me? A few highlights stand out.

Ignore the NO’s. 

If your body is telling you something’s wrong, keep asking til you get an answer you believe.

Get to the truth.  

I can’t ever remember being told explicitly at the  time of diagnosis that I had cancer, it was always ‘carcinoids’ or NETs. I found a bit of useful information on the Web but in 2009 it was less helpful than today. The truth came from a human much later at an NPF support meeting, when Cathy Bouvier confirmed that yes indeed, NETs are cancer. Thanks, Cathy, for your courageous clarity. 

Since meeting NET experts, I now know that I have upper GI NETs, with the small bowel as the primary site and secondaries in the liver, mesentery, adrenal glands and spine. Carcinoid syndrome is also present though mild, and there’s no discernible heart damage to date. 

I need that truth.

Don’t assume you can go back to your old life. 

Once the dust had settled, I was too shocked, exhausted and physically damaged to be the wife, mother, daughter, friend I had been previously.  It took a few years, a lot of hard work and a big dollop of angst before I realised my only effective coping strategy was to re-build a new normal from the debris of the old one. It’s rather odd to be in my mid sixties and experiencing the same processes of self-examination and self-determination that I underwent in my twenties and thirties. It doesn’t get easier the second time round but there’s a certain comforting familiarity to it.  Eight years on, the re-building is still a work-in-progress.

Optimal treatment for NET patients.

This is only possible from specialised NET experts, preferably within a full multi-disciplinary service.  As I’m able to make a first-hand comparison between the care given by NET experts  and NET ‘inexperts’, I  feel I have the right to make this assertion.

When I was diagnosed, access to an adequate  NET service  in my neck of the woods was patchy at best, non-existent at worst. Thankfully that’s changing due to the combined efforts of a couple of  unbelievably wonderful health professionals and our close-knit band of stubborn, not-always-popular NET patients.  Thanks a million, trillion, zillion, folks.  It’s a privilege to know you all.

What does my future hold? 

Even though my condition is well-managed and stable at present, accepting my restricted life is a daily struggle. The compensations are numerous and centred on relationships with the precious people around me. This state of affairs may last for years or maybe  the next 6-monthly check-up will spot that the cancer is on the move again. The uncertainty of waiting for that second shoe to drop is a bit weird, but then NETs have taught me that certainty in life is just an illusion and meanwhile there’s a good life to be lived.

Thanks for reading.