On being diagnosed with rare cancer…
It’s devastating to receive news that you have been diagnosed with cancer (ANY CANCER). But when you realize you have been diagnosed with a rare form of the disease your world can become a very lonely place.
You see, unlike breast cancer or prostate cancer or a few others in the top 5, rare cancer patients will discover that finding information on what pertains to them is difficult as well as finding others who have the same type of the disease.
You soon find that treatments are very different (or is some cases non-existent) for your type and the stage of your disease. You also find that your friends and family have little or no understanding of what you are going through since most of them will have never heard of your type of cancer as most have only been exposed to the more common types of cancer. They typically expect your treatment to follow those types of more common scenarios as well.
Even doctors who specialize in cancer treatment (especially in rural areas) may have never treated someone with what you have, leading to misdiagnosis and treatment plans which fail. Many of your friends and family will also come up with some of the strangest natural remedies you’ve ever heard of.
They are all well intended but usually fall short of your needs for what you are battling. Everyone will be wearing pink ribbons and you will soon realize all the money raised for other cancers and causes are not for you and your rare form of the disease.
Awareness and research efforts for rare cancer fall very short of the need due to a lack of funding.
Yes, having a rare cancer can be a lonely place, and most folks with a rare disease struggle to find the answers they look for and need.
My answer is this: Let’s just “Ride On.”