My name is Sharon Lane. I am a rare cancer survivor. When I got diagnosed with my cancer, the doctors wanted to treat it like a normal breast cancer. My cancer is not normal. I was able to do research, scant as it was, for my cancer and found that the treatments used for normal breast cancers would be totally unnecessary and could actually cause me further medical problems in life. And the treatments not being considered as necessarily important, were mandatory if I wanted to stay alive and healthy. You might ask how this could happen. I found an honest oncologist who explained to me that doctors had to spend their research time where it would render the most benefit for their entire patient base. Unless their specialty is rare cancers, they do not spend time doing research for them. They simply do not have the time.
I had a rare cancer, I had some computer knowledge, and I had time. Those three assets eventually brought me here. I have created, maintained, and funded this website for all of the rare cancer patients and parents of pediatric cancer patients who I have met along my journey. Those who believed they were underserved and misunderstood; sometimes misdiagnosed and mistreated. Patients who could not find anyone else with their cancer to talk to about what they were going through and how they needed to go through it. Our stories of frustration are sometimes very similar, although our rare cancer diagnosis may be different. At a time in our lives when cancer was attacking our bodies, we had to muster up the strength to fight for information and appropriate treatment.
I met some very unselfish people who were willing to give their time and energy to others, even though they were adversely being affected by their own cancer journeys. They have offered to be volunteer contact support people for newly diagnosed patients or to organize fundraising efforts for the individualized research that is mandatory for rare cancers. Others have chosen to donate their personal stories to help others.
We are a group of survivors and patients who hope to become survivors. We are cancer patients, husbands, wives, parents, loved ones, and people who care about others. Some of us have endured the treatments, recovery, and sometimes death of the cancer journey. We come from different ethnic, religious, and financial backgrounds. But, there is one thing that we all have in common. We want to beat the beast!
To do that, we desperately need your help. You may choose to distribute a flyer, donate your time, become a survivor volunteer, let us know about your research fund or fundraising efforts or donate to these efforts, and/or share your story with us, submit upcoming events that impact our cancer community. If you are an adult rare cancer survivor, or parent of a pediatric cancer survivor, consider joining our forums to share your information and support.
In some people's lives, hours are precious...............