A friend and I had a conversation two months ago about where to turn if he were to get cancer.
His answer? "I'd email you first, and then start Googling."
For those 1,658,370 people unlucky enough to get diagnosed with cancer this year, where will they go after stumbling out of the oncologist's office, their life forever altered?
They (and you) will probably do what Jody would – fire up the laptop while calling the first person you can think of with a cancer history.
But, where SHOULD you turn when you don't have an old roommate with cancer? Advocacy groups. I've mentioned almost all the major melanoma ones at some point, but associations are out there for every cancer. There's also general cancer ones – like LIVESTRONG, Stand Up 2 Cancer, or the American Cancer Society) – and government-backed organizations with advocacy information, like the National Cancer Institute. Simply put, there are no shortage of organizations to provide assistance for patients, their families and their caregivers. So what do they do, and how do they help you?
Directly, they provide:
In most cases, a forum or support network to connect patients with other patients
In some cases, personal consultations
Information sharing is more than just passing on medical knowledge. Expert advocates can help newbies find and understand their options in plain English. A patient sharing with other patients is one of the most invaluable tools, especially in the early, unknowing stages of diagnosis. One Philadelphia-area advocacy group I have written about before is the Melanoma International Foundation, in Wayne, PA. Their vision of getting all patients access to top-notch melanoma treatments helped myself and many others navigate the murky waters of second opinions and clinical trials.
The MIF was gracious enough to include me in their melanoma patients' video production, and I have been negligent in sharing the final version.
"Melanoma – Never Walk This Path Alone" is an excellent piece, sharing stories of a handful of patients from different walks of life bound together not by a diagnosis, but the paths each of us took in tackling this disease. It talks about different phases of the cancer journey: diagnosis, treatment, being your own advocate, support, frustrations, insights and inspiration. For someone who is looking for answers, this is a great launching point to understand what patient's experience.
Indirectly, advocacy groups also "help" by:
Raising awareness (like the Capitol Hill presentation)
Generating research donations
Holding events that bring groups together
These events can be more casual and intimate, or they can be huge (like the Avon Walk To End Breast Cancer, which my Irish family participates in every year). One of the biggest obstacles advocacy groups need to overcome is a roadblock in reaching their audience. Time is of the essence when the audience has a possible death sentence hanging in the balance of finding the right treatment, so organizations are active in many ways to push their message out.
The MIF is hosting the 13th Annual Safe from the Sun event on April 19. Teams compete to fundraise for the MIF's patient support program, and in turn honor those affected by melanoma - past or present patients, or ones who have lost their battle. There is a valuable free screening done by local dermatologists to help ensure the number of close calls goes up and stage IV diagnoses go down. I was there two years ago, having a tough time walking; this year, I'm coming back to be one of the patients to go from Stage IV to 5k with the help of the MIF.
There are also valuable information sessions across the country. This Saturday I am part of a panel brought together by the Patient Empowerment Network (along with Banner MD Anderson Cancer Center in Arizona, and the Melanoma Research Alliance) for a town meeting on the progress being made in the melanoma world. It's precisely the kind of work advocates should be doing to bring understanding and awareness to the information available to each patient out there. If you are in the Phoenix area this weekend (or want to head there from nearby West Coast destinations) and have melanoma questions for doctors, advocates, or us patients, please check it out. There's also an online webinar (see site for details) so you can see and hear my made-for-blogging face/voice over the Internet, starting at 1 p.m. Eastern Time.
In April, join us for a walk in Wilson Farm Park – or a 3.1-mile jog, if you can. I've got my running shoes packed, and have been training sporadically at just under a 10:00 mile pace. Since this is a USATF Certified 5k course with electronic timing (and attracts actual runners), I am confident I will finish in the top 95% of my age bracket. Besides getting good exercise, you'll gain knowledge and awareness while making a contribution directly to the foundation, and indirectly to saving peoples' lives. Armed with knowledge (and with the availability of the dermatologists performing skin checks), that life may very well be your own.
The Safe from the Sun still needs volunteers, especially the day of the event, with flexible shifts starting at 8am. Sign up online: http://melanomainternational.org/safefromthesun/?page_id=93
T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »