This post was inspired by an interesting discussion that took place awhile ago on one of the online neuroendocrine cancer patient groups that I’m a member of. It started with a younger patient asking for advice about when to tell the person she was going on a first date with about her cancer. I was surprised to learn that most of the patients who responded to her question had told very few people outside their immediate families about their diagnosis. I’m quite the opposite. Though I’m naturally an introvert, I’ve been living my cancer journey out loud since the very first day I heard that fateful C word!

In the summer of 2013, when my doctor called and told me that I had cancer, I’m sure that I was in shock. One of the first things I did was sit down and make a list of who I needed to call and then I started. I called our pastor, several close friends, and of course, our family. Just three days later, I wrote the blog post that shared my diagnosis with the rest of the world. At that time, we didn’t even know what kind of cancer I had. I shared that news a couple of weeks later in this post.

Why? Why did I choose to share my diagnosis so openly?

Learning that you have cancer is overwhelming and I knew that this wasn’t something I could handle on my own. As a Christian, my first instinct was to call the people I knew would pray for me. Without realizing it, I was beginning to build an invaluable support system that would make the journey so much easier.

There were two reasons for sharing my diagnosis on the blog. Writing helps me process things and boy did I need to process! Since I’d already been blogging for several years, that seemed like the logical place to start writing about what I was going through. Secondly, posting updates on the blog was an easy way to communicate what was happening with our large extended family and with friends who are literally spread around the world. It meant that I didn’t have to repeat myself over and over again which would have been mentally and emotionally exhausting.

As time went by, however, sharing my journey openly and online also became a way to educate people about neuroendocrine cancer. Ten years ago, NETS was considered a rare cancer, but the number of people diagnosed with this type of tumour has been increasing over the years and it’s no longer fair to say that it’s rare. Sadly, however, it’s still not well-known, so education and advocacy are extremely important. Like any other cancer, early detection means more likelihood of successful treatment and long-term survival. Family doctors need to know that when a patient presents with symptoms such as abdominal pain, diarrhea, shortness of breath, wheezing, heart palpitations, high blood pressure, and/or flushing, neuroendocrine cancer is a possibility. Patients need to know that when their symptoms persist after a more common diagnosis is made, they need to persevere until they get a correct one. It could be NETS. Patients with neuroendocrine cancer, particularly the newly diagnosed, need to know that there is hope. More research is needed to find better treatments and ultimately a cure. Until these things happens, I’ll continue living my cancer life out loud!