Kath Lewis

Today, 4^th February, is international ‘Rare Cancer’ day…

11 years and 4 months ago I am sorry to say that I didn’t know that ‘Rare Cancer’ day existed.  11 years and 4 months ago I had never heard of neuroendocrine cancer either, a lot has changed since then.  If any of you are familiar with my blogs, although it’s been a while since I posted, you will know that I have been quite a journey since then.

For years before my diagnoses of small bowel neuroendocrine cancer, with metastasis to my liver, lymphs and peritoneal wall I had suffered with ill health.  Mainly centered around my abdomen,  pain, bloating, diarrhea, sweats and constant fatigue.  

In 2012 I had a repeat surgery for abdominal adhesions, as I was suffering with symptoms similar to my previous surgery 5 years earlier.  This time though there were no new adhesions, but there was some scarring on my intestines, which my gynecologist thought may have been down to some sort of infection, so he referred me onto a gastroenterologist for further investigations.  I was also asked to do an exclusion food diet to see if I had any food allergies that were aggravating things.  

The diet resulted in a diagnosis of an allergy to wheat, which I then cut from my diet, and it did help for a while with my intestinal problems, but it was a false dawn, so to speak.  I was then sent for a set of scans, MRI, CT and ultra-sound.  This showed a few areas of possible concern so I was then referred on to an endocrinologist.  The endocrinologist asked me to do the 24hour urine test, that came back inconclusive.  I was asked to stop my HRT as that can skew results and do another test 3 months later, inconclusive again, we had one more try but my symptoms were getting worse.  It was affecting my work, ruining my social life and I was now spending far to much time in the loo, it was not pleasant and at time very embarrassing, especially if I had to use a public loo.

Finally I was sent for an Octreotide scan (a fore runner to the gallium scan, but still used by some hospitals), which was done over 2 days, and each scan took 2 hours.  I was given an octreotide contrast to see if it would find anything, it did.  However, my consultant at the time didn’t think it was really anything to worry about, there was a small lesion on my small intestine that had lit up, but he wasn’t worried about it and said we would just carry on with the 24hour urine tests to monitor what was going on.  Neuroendocrine was never mentioned.

In the meantime, my symptoms were going into over drive, and it was over 2 years since my adhesion surgery, and I decided enough was enough and that I needed to push back and say that wasn’t good enough, something was not right, my life was no longer my own and I wanted some proper answers.  No more wait and see.  So he agreed to do some investigative surgery and an appointment was made to see the surgeon. 

The surgeon on the other hand seemed quite concerned and said he would get me in as quickly as he could, he asked if I would be able to take a cancellation appointment if one came up.  I of course said yes, I wanted answers.  The rest as they say is history, I saw the surgeon on the Friday, they did my pre-med assessment the same day, and I got a call at work on the Monday to ask if I could come in the next day. I had a laparoscopy on the Tuesday, and was told I would need a couple of weeks off work to recover.  Two weeks later we got my diagnosis, the surgeon had noticed lesions on my liver so had sent a sample off to be biopsied, to say we went into shock was an understatement.  Not only did I have cancer, it had spread, it was inoperable and the icing on the cake was that I had probably had it for 7-10 years already.  It was the spread to other organs that had aggravated existing symptoms.  

Also we had been given the name of a cancer we had never heard of.  The consultant explained what she could, and that she was new to it to, but promised that if she couldn’t answer my questions in clinic she would go out and find the answer for me.  The nurse was excellent to, she gave me details for Neuroendocrine Cancer UK, and told me to go there for my information, not Dr Google.  That was some of the best advice I could have received as I found out I wasn’t totally alone in this, there was the information I needed and support groups, I had found my tribe, so to speak.  It was a massive relief, but I still had a long way to go to come to terms with it and educate myself.

For as long as I can remember I have always had stomach problems in one form or another.  Appendix removed when I was 12, very painful periods, hysterectomy at 32, early menopause, then diagnosed with IBS, acid reflux etc, etc.  

Nobody wants a cancer diagnosis, but in a strange way it saved me.  I cannot be cured but I can be treated, life isn’t perfect, but at least treatment allows me to live my life.  Maybe not the one I or indeed we had envisioned, but I’m still here, and I hope to be for many years to come.  Life is good, if a bit unpredictable at times, and being rare (although Neuroendocrine is not as rare as you might think) makes you that bit more special in my honest opinion:-)

“I’m not afraid of dying, it’s time I’m afraid of…” Interstellar 2014