Living with M.E.N, A Rare Disease

No this is not a post about the male species. Yes… was a shock to me that there was a disease called M.E.N.  No, you can’t divorce it.  It’s incurable. Go figure!

The disease is actually called Multiple Endocrine Neoplasia Type 1 (M.E.N 1).

What is it? It is a rare disease that causes NET (neuroendocrine tumours) to grow in my stomach and pancreas but they can grow any part of my endocrine system. These tumours release huge amounts of hormones. These tumours are usually benign. Unfortunately, mine are not.

I was diagnosed in 2001 by accident. I had an endoscopy because I was having serious stomach issues. During the procedure my surgeon took random biopsies from my stomach. My biopsies came back testing positive for M.E.N 1, Zollinger Ellison (ZE) disease and Gastric Carcinoid. To be honest, I didn’t understand any of those words except the fact that carcinoid sounded very much like cancer to me, and once I heard that word my emotions took over and I didn’t really hear much more of what was explained to me. Even my surgeon was surprised. He had never seen that before, believed it to be wrong and retested me taking more biopsies from my stomach.  It wasn’t wrong.

When I was diagnosed I had 4 children, the youngest was 2 years old and like everyone who has ever been diagnosed with cancer I was terrified I was going to die and never see my kids grow up, graduate, and get married and have babies.

If I am being really honest, I was also terrified of losing my hair if chemo was needed. Vain I know, but I didn’t want to be bald.  A really stupid thing to worry about in retrospect. What made it even worse was I went online and googled all 3 diseases. Then I really thought I was a goner. NEVER do that!!!  At the time there was little to no information available to patients as the conditions were so rare. It is a familial disease and my sister was also diagnosed a couple years after I was.

My gastric carcinoid tumours are in my stomach. They are small, multiple and close together. And they create total havoc on my body with the hormones they secrete. I have VIPoma’s in my pancreas, these are relatively new. The symptoms for those tumours started about 18 months ago. I knew something different from the normal problems that were usual for this disease and that something else was happening in my body, and mine was not doing great.

I had been struggling for months before I went to get tested for a new tumour.  I am now dealing with the effects of the M.E.N 1, two different types of tumours and the side effects from them, and then the side effects from the treatment.  My cancer does not respond to chemo and the drug used to keep them from growing and spreading is an intermuscular injection called Lanreotide.  I get that every 3 weeks and I am now on the highest dose they make, so it is the frequency that increases. There are months I take up to 3 needles a day for break through symptoms that can’t be controlled. I ache endlessly, I am so exhausted some days I can barely function and migraines are a constant part of my life.

Then there is the mental health side of the disease. I have cancers that can’t be cured. I know it is wrong but I actually am jealous when someone I know gets a cancer that can be treated and cured. Don’t get me wrong, I am so very happy for them, but I really wish they could cure me too.

There are days that mentally I can barely stand the fact that there is cancer in my body that can’t be removed. I have anxiety and depression and there are days where I can’t make the worry go away. Then I realize that this is my life. It is the hand I have been dealt and I have successfully lived with cancer for 19 years. Yes, it is getting harder to do but I am doing it. The odds are pretty good that the symptoms of M.E.N 1 or the growth of my cancers will be what eventually kills me. But that’s not going to be anytime soon if I have anything to do with it.

Help for NET patients have come a long way since I was diagnosed. Now there are resources for people diagnosed with neuroendocrine cancers and M.E N 1. There are support groups and an agency called CNETS Canada that educates and raises money for NET cancer research and an annual NET Cancer Day on November 10thto raise awareness for this rare disease. I am not alone in this. And that helps. I will use every resource I can to continue living with cancer and M.E.N 1. Because the alternative sucks.

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