I’d like you to imagine or remember that moment you are told you have cancer and the doctor informs you of your treatment options, whether surgery, radiation, chemotherapy, clinical trial or some combination thereof. Time is of the essence and you need to make a decision soon. Aside from the people in the room with you (your doctor, nurse and spouse/partner/caregiver/friend), where can you turn for objective advice?
When I was first diagnosed with stage three melanoma in 1999, there were few, if any, options. Whether they were helpful was another story. Some recommended I find a support group specifically for melanoma. What chance was there that I could find a support group nearby with an imminent meeting where there was someone in attendance who could relate to my specific situation? I didn’t think it likely and never sought one out.
Today, there are various online communities that offer support. Like a live support group, you still need to hope that there is someone with relevant experience monitoring and reviewing your online community in the time frame you need. You may then need to wade through a multitude of responses to your post and hope there is helpful advice in their somewhere. I do believe these resources are extremely valuable. If you’re like me, however, you want to find someone who has experienced exactly what you are about to experience, then reach out for a private conversation.
My name is Dan Engel and I recently founded PatientTrueTalk.com to solve this pressing issue. I am a stage four metastatic melanoma survivor who collectively has endured ten operations, gamma knife surgery on a brain metastasis, radiation treatment, six clinical trials and seven years of a maintenance clinical trial. I’d like to think that my medical record, and the fact that I’ve read and signed well over ten informed consent forms (one for each trial and each amendment), gives me some credibility as an expert on the cancer patient experience, with a particular focus on clinical trials.
When I was diagnosed and faced my first clinical trial, I desperately wanted to speak to someone who went before me. Among other things, I wanted to know about side effects, life during treatment, state of mind, pain, etc., or basically everything I read about in the informed consent form. I wanted to know what to really expect from a patient’s perspective, not that of a nurse or doctor. I understood that my experience by definition would be different, but relished that opportunity to speak with a fellow patient. During the countless time I’ve spent in infusion rooms, I made sure to speak with anyone else who might need a friendly ear.
Recently launched, PatientTrueTalk.com is the only patient-to-patient registry where patients and/or their caregivers can create profiles with as much information as they feel comfortable sharing, and find matching profiles based on algorithms created by some of the country’s top clinical oncologists. Patients/caregivers can also search along their diagnosis/treatment parameters, refining their search based on the results provided. They can then send secure messages directly to those who they believe represent the closest match. Once a connection is made, the two parties can speak off-line and hopefully form a friendship. My profile is the first “patient advocate” included on the site.
I believe that there are thousands and thousands of survivors like myself who provide informal advocacy on an ad-hoc basis all the time, and that would love to be part of a more organized effort to help fellow patients and their families. The only thing missing is the technology platform to aggregate those survivors. PatientTrueTalk.com fills that void. To be effective, however, the site needs thousands of survivors who have battled every type of cancer to register as “patient advocates” to be available for the newly diagnosed and/or their caregivers.
My call to action is this: if you are or know a survivor, please register or encourage others to register on the site.
If you’d like to learn more about my trials and tribulations (pun intended), check out my book at www.thrivingthrucancer.com.
This article was originally posted on The Patient Empowerment Network.