Tag Archive for: stupid cancer

Stupid Brain Cancer!

Matthew Zachary

Matthew Zachary

(Matthew Zachary is a brain cancer survivor and founder of Stupid Cancer.)

Brain cancer. Those two words strike fear into the hearts of man perhaps more than any other cancer. After all, it’s your brain. Some might argue it’s the one thing you can’t live without. (Take that, heart!)

Now, I’m not one to start pitting body parts against each other in the world of cancer. I’ll leave that up to the body-part-specific groups. Let that infighting enjoy itself for all it’s worth. Once they realize that the future of medical research is rapidly shifting to biology, immunology and genomics, rather than geography, they’ll soon realize it’s the new bandwagon to hop on.

When I was a 21-year old college senior, I was diagnosed with a very aggressive form of pediatric brain cancer: medulloblastoma. There were only 200 cases a year, the tumor was congenital and it nearly always occurred under the age of 12. I was one of the rarest cases ever seen at the time; and that did not bode well.

What’s more, the fact that I was not a child presented even more unique complications than otherwise thought. As an emerging young adult, issues of college, fertility, relationships and mental health had to weigh in. They didn’t of course since it was the 1990s and the idea of “patient-centered care” was not a concept. Back then you were lucky to be alive to deal with whatever side effects you had, all for the privilege of not dying from cancer. And those were the magic words: the “privilege” of not dying.

Considering I was given six months to live and, after those six months, a whopping 50% chance to survive for 5 additional years, I’ve done alright. January 10th, 2016 was my 20th cancerversary in somehow defying the odds. There is no rhyme, reason or explanation for how this all came to be. I just got lucky.

And that’s all anything is, really. Luck. Good luck or bad luck, it’s still luck. Yes, there are conscious choices we believe we can make, but, in the end, we are all bound by the singular commonality of chance. Call it what you will: karma, God’s will, fate, metaphysics, destiny, etc…all we have is our free will and the privilege to make choices in response to shit that is happening or in advance of shit that may happen.

Which brings me to my point. (I actually had a point, I promise)

I founded Stupid Cancer because I wished I had that kind of resource at my disposal when I was depressed, alone, afraid and without peer support. I didn’t even know that peers support was a thing. “You mean there are other college students out there with cancer who understand what I’m feeling right now?” What a concept.

It’s easy to say that no one should face cancer alone It’s entirely another thing to actually fill that need. Stupid Cancer was the community I needed that I never got to benefit from. And going back to my aforementioned comments about “all cancers matter”, I really didn’t care if I were connected with a young adult with leukemia, breast cancer, colon cancer or brain cancer. For young adults — a largely unknown demographic in the war on cancer — the playing field is leveled when you’re told those three words, “You have cancer.”

Stupid Cancer is entering it’s 9th year of operation and has proudly emerged as the largest support organization representing teens, adolescents and young adults (15-40). We’ve also inadvertently become a home for the hundreds of thousands of pediatric cancer patients who survive and grow up. It has become a remarkable nonprofit brand in healthcare that has democratized survivorship. Because, no matter your diagnosis, you have the right to survive with dignity, quality and be treated age-appropriately.

In 1996, that did not happen. In 2016, 1.7 million Americans will be diagnosed with a primary cancer. 80,000 of them will be children and young adults. We are no better or worse than other age groups; we’re just different.

And we matter.

Cancer survivorship is an art. And the art of your survivorship is how you choose to get busy living, The era of cancer survivorship has begun. It is not about how long you live, but how you live, that defines your legacy in this life.

So for now, I’ll leave “cure-hunting” to everyone else.

Clinical Trials and Young Cancer Patients

Few Cancer Patients Enroll in Clinical Trials

It is well known that very few people with cancer actually enroll in clinical trials. This, for a myriad of reasons, including misconceptions, logistics, awareness, eligibility and fear.

Many patients lack awareness of what a clinical trial actually is, what it is for, and what is being tested.

Many healthcare professionals do not fully communicate information about clinical trial availability and participation when discussing treatment options with their patients.

Patient Advocacy organizations and other healthcare groups are trying to get the word out about clinical trials as a good treatment option and raise awareness. But progress is slow.

There are myths perpetuated about patients being “guinea pigs” in medical trials, or about patients being given “placebos” in the place of cancer medication. These myths need to be addressed and there are organizations and websites that do offer general answers to patient questions about trials. Patient Empowerment Network offers a FAQ page that addresses common questions about clinical trials. And ProjectInnovation offers a special section in their resource guide called, Debunking Common Myths About Cancer Clinical Trials.

Besides a lack of awareness and perceived misconceptions about clinical trials, there are logistics and eligibility obstacles that prove to be just too overwhelming for many patients. These obstacles are being addressed by many organizations, but again, progress is slow.

Do Younger Cancer Patients Experience the Same Preconceived Ideas About Trials?

Most cancer patients are older. What about the younger cancer patients? Do they feel the same way? Do they have the same misconceptions and the same fears? Do they also suffer from the same lack of awareness? Are they also overwhelmed by logistics and eligibility issues?

These are questions that StupidCancer and Bristol-Myers Squibb are trying to answer.

StupidCancer, founded by Matthew Zachary, is the largest charity that specifically focuses on young adult (age 15-39) cancer. There are 72,000 cases diagnosed each year of young adult cancer. This group suffers from a lack of awareness and understanding from the community around them. StupidCancer helps by building awareness, offering support and resources and generally getting the word out through advocacy, research, outreach, mobile health and social media.

Iamnotatrial Project

StupidCancer, in partnership with BMS, is embarking on a project called “iamnotatrial” that will feature young people between the ages of 15 and 44 years old who have completed a clinical trial in one or more of 15 cancer types. These clinical trial participants will be featured in a series of short videos that will tell their stories and relay their experience with clinical trials and will hopefully help build awareness and interest in clinical trials within the younger patient community.

When interviewed, a representative from StupidCancer explained that the goal of the iamnotatrial project is that by showing real patients and survivors telling their story in their own way, by video, that they can channel the energy of these patients and send it towards other patients who are taking action and looking for trials, enrolling and asking questions.

It is the hope and intention that viewers of the videos will become more aware that trials are a viable option, that there is diversity (gender and ethnicity) in trials and that there are many reasons to participate in trials- to help yourself as well as to help others.

Patients Helping Patients

Cancer Patient

Empowered Patient at a recent Town Meeting for Cancer Patients

Patients learn from patients like them. Patient stories are a powerful way of getting the message across. We are anxious to see these videos and champion their cause. We are anxious to help SupidCancer get the word out about clinical trials to their younger cancer audience.

Talk to your medical team and consider a clinical trial. It could be the best treatment option for you.