Lung Neuroendocrine Tumors and DIPNECH.

As I'm hoping to see the community grow so we can offer advice and support to each other I thought I'd write a little about my cancer so maybe others will see and join in.

I have Neuroendocrine Tumors in my lungs, never smoked a day in my life, a fact I was so smug to my peers about as a teen that I sometimes wonder if I got lung cancer just from the sheer irony of it. I'm "lucky" in that Neuroendocrine Tumors (NETs) are usually very slow growing, and all the doctors like to tell me we caught it early, but it doesn't feel lucky. They removed my lower left lung lobe, telling me that they got it early, it hadn't spread and I would be all but cancer free. Only next scan I have 3 little micro tumors popping up that weren't there before.

Turns out I have a rare condition, so rare that there is actually no idea how many people actually have the condition, but estimates are around 200 in the USA, of those 95% are post menopausal women. Diffuse Idiopathic Pulmonary Neuroendocrine Cell Hyperplasia. It's a mouthful but basically for some reason, the neuroendocrine cells lining my bronchi, just woke up one day and started reproducing like crazy, something they stop doing before you're born. They reproduce so often and so fast they can throw off teeny tiny endocrine tumors, which means eventually your lungs get riddled with 10's of teeny tiny tumors that start growing and blocking your airways. Then for fun, rarely one of those tumors might just decide to be a small cell cancer, just to keep you on your toes.

There are a couple of treatment options, but I hit that wonderful catch 22 situation I'm sure others of you maybe have had with cancer treatment. We can't do anything until we're sure it's cancer (even though the 2 tumors they got from my left lung were definitely NETs), but it's not bad enough we will risk a biopsy to prove it's cancer yet. So you just have to wait. No one ever tells you how much of cancer treatment and follow up feels like hurry up and wait.

Anyway I hope we can build a community here, I know it takes time but I look forward to getting to know more people and hear about their journeys, either with cancer or supporting someone with cancer.