I wish Brittany Maynard had met other 29-year-olds with brain cancer

PHOTO: Brittany Maynard

Many people have asked me how I feel about Brittany Maynard's decision to end her own life before she entered the final stages of her disease--a grade 4 glioblastoma (GBM), the same kind of brain cancer that took the life of Senator Ted Kennedy.

GBM is also a type of brain cancer that impacts many of the people and families who end up finding my little blog here. And statistically speaking (not that I give a shit about statistics), this is also the kind of cancer I will have one day--how far into the future that will be is an unknown, thus the frustration of living with an astrocytoma. But I digress.

I have many conflicting thoughts in my mind on the subject of physician-assisted death, and I hope one day these thoughts will gel and I can come to a resolution on how I feel about it, but for now I am just confused.

This could have been me

Brittany's original diagnosis--an astrocytoma grade II--is the same as mine (and many others I have met in the brain tumor community), and she and I were diagnosed at the same age (29). When I heard about her story it was only natural for me to put myself in her shoes.

After her diagnosis changed, and after seeking second opinions, Brittany made the decision to move to Oregon and have access to the state's death with dignity law.

I have known people who have died from brain cancer, and I know people who are still living with this disease. I wanted to tell Brittany to wait it out--you don't know how fast these things will bring you down. I wish Brittany gave herself time to meet other people like herself and to find out what life can be like for a 29-year-old with brain cancer.

But who am I to tell a stranger what to do?

"We are typically poor at predicting survival"

Neuro-oncologist Ashley Sumrall, MD, made some great points about Brittany's situation in a post she wrote for a popular physician website. Dr. Sumrall wrote:

Yes, GBM is a terminal illness. Yes, GBM is a terrible disease filled with suffering. But it is a diverse disease. Depending on which part of the brain is affected, patients may have minor or major neurologic deficits. As an outsider looking in, Brittany appeared to have no paralysis, muscle weakness, or language issues. A rapidly growing brain tumor usually causes at least one of these problems. I can’t seem to resolve this dichotomy between the pictures painted by her words and the pictures shared of her at the Grand Canyon.... Each individual’s course is so different with cancer. We are particularly poor at predicting survival for young patients. Just because a study showed a median overall survival value, it doesn’t always apply. For glioblastoma, we know that age and neurologic function matter. She appeared to have both on her side.

And, more importantly, how much time did her doctors spend with her? In an era where physician visits grow shorter and shorter, were they watching the clock or the patient? Was she being squeezed in for a consultation? Did they know the impact of their words would be so large? Did Brittany know the truth about chemotherapy and radiation for this disease, as the side effects are vastly different from those from the omnipresent breast cancer? Was she cognitively impaired by her illness, and did she fully understand? Was she worried about disappointing those who viewed her as a role model for assisted suicide?

Brain tumor community weighs in on Twitter

Just one day after Brittany took her life, @CBlotner_ and I hosted a #BTSM (brain tumor social media) tweet chat and the topic was focused on palliative care. Due to the timing of the chat, this also gave participants an opportunity to discuss how they felt about the recent news surrounding Brittany. We did not talk about whether we felt physician-assisted death was morally right or wrong, we mainly focused on how the media portrayed this disease as a hopeless situation and how it made us feel as brain tumor patients.

The general consensus on Brittany's decision is that it was none of our business what she wanted to do.

Stupid Cancer and Imerman's Angels

If you are a young adult (15-40) diagnosed with cancer and you want to meet other people like you, there are two resources I highly recommend.

Stupid Cancer, a 501(c)3 nonprofit organization, is the largest charity that comprehensively addresses young adult cancer through advocacy, research, support, outreach, awareness, mobile health and social media. Their innovative, award-winning and evidence-based programs and services serve as a global bullhorn to propel the young adult cancer movement forward. Connect with Stupid Cancer and get plugged in to their meet-up community.

Imerman's Angels partners anyone seeking cancer support with someone just like you – a “Mentor Angel”. A Mentor Angel is a cancer survivor or survivor’s caregiver who is the same age, same gender, and most importantly who has faced the same type of cancer. This is a free service and I highly recommend it.

If Brittany had sought out either of these resources perhaps her story would have had a different ending.