Each month, the Children’s Brain Tumor Tissue Consortium highlights the stories and contributions of patient families, clinicians and researchers in “Collaborative Corner” to find cures for pediatric brain tumors. If you would like to share your story as a guest blogger, please email firstname.lastname@example.org
By Amanda Haddock, President, Dragon Master Foundation
It is Brain Tumor Awareness Month, and that seemed to be the perfect time to reflect on what I know now as an advocate* for brain tumor patients and their families. I’ve certainly learned a lot, but I can tell that, even from just an advocacy standpoint, there is so much more to consider. (Don’t get me started on what I don’t know from a medical standpoint. We don’t have that much room!)
- Most people are still not aware of what a devastating diagnosis a brain tumor can be. Public assumption is still that a) if it is “benign” there is nothing to worry about, and b) if it is malignant, then it is either curable or c) there is no chance at survival. As with most things, the truth lies somewhere in the middle.
a) Even benign brain tumors are taking up precious real estate inside the head. Surgery isn’t always needed, but when it is, it is a serious procedure. People with benign tumors may have more than one, and may have more occur over the years. They are monitored by their doctors from that point forward in their lives.
b) No matter what you’ve seen on the news, most malignant brain tumors are NOT being cured by whatever big hospital was touting a success story. Are there long term survivors? Gratefully, yes. Do we know why they are long term survivors? Mostly, no. There are some extremely promising treatments coming into play, but for the most part, they seem to only work on a subset of patients. We need to understand these patients in greater detail to know if they are simply outliers or if the medications they are on are truly working.
c) Despite what you will hear on the news, there ARE long term survivors of most brain cancers. Even the most debilitating, like DIPG, has survivors who beat the odds for a while. Keep in mind, however, that for DIPG, the average survival is somewhere around 9-12 months post diagnosis. So a long-term survivor of that particular tumor would be two years. That’s not exactly the type of longevity most of us hope for.
- People think brain cancer is just like other cancers. It’s true that brain cancer is still cancer. Patients will typically undergo some regimen of surgery, radiation, and chemotherapy. However, patients with brain cancer can be dealing with many more symptoms than just treatment side-effects. The disease is attacking the core of who we are as people, and brain cancer patients can deal with a multitude of other issues. Here are a few that don’t typically affect other cancer patients**: memory issues, sensitivity to sound/activity, aphasia, loss of balance, loss of motor function. To state the obvious, at least in 2018, brains can’t be replaced. We can’t remove them and keep going. This is our most critical organ, and we need to do more to protect it.
- Brain cancer is a rare disease. That does not mean that it hasn’t rocked your world, or mine for that matter. What it means is that per capita, it does not occur as often as other cancers. This is not an insult to the brain cancer community. In some cases, it actually means that they acknowledge that more needs to be done to help these patients. There are efforts afoot to fund more “rare” cancer research, so that could actually be a good thing for this community.
- If something sounds too good to be true, it probably is, but not always. Let me explain. New treatments have to come from somewhere, and there is always the cutting-edge of science that is delivering new possibilities. At some point each new treatment is untested. However, if the new treatment is scientifically sound, it will be getting attention from the bigger brain tumor hospitals and foundations. It will be part of a scientifically based process like a clinical trial. That holds true of good science both inside and outside the U.S. borders. Despite whatever conspiracy theories you may hear, no one is hiding the cure for cancer.
- It is extremely important to go to a major cancer center for a brain tumor diagnosis. People think of a second opinion as an optional thing, but I really believe you should think of it as a mandatory part of the process. Whether it clarifies your initial diagnosis and treatment path, or sets you off in a new direction, in most cases it is vital information that you really need to have. (Getting a second opinion holds true for lots of medical conditions, by the way. Good doctors are NOT offended by you getting a second opinion.)
- Now more than ever before there is reason to hope for cures. When my son, David, was diagnosed in 2010, you could sense that things were starting to happen with brain cancer research. Tiny steps forward, even back then, gave us hope that maybe a big breakthrough would happen. If I’m being honest, I have to admit that I was fearful that they would find the answers right after David died. That’s how close I thought we were. I’ve learned a lot since then, but I believe, now more than ever, that there is good reason to hold onto hope. Those little steps forward are happening, but now, unlike in 2010, some researchers are sharing their information with each other much sooner. They are collaborating and looking for ways to help speed processes for everyone. Technology is finally beginning to be used in real and meaningful ways to bring clarity to research. More clinicians are willing to break the mold of how things have always been done.
I wish I had understood these things before my son was diagnosed. Above all, I wish I had gotten involved in raising money for cancer awareness sooner. I see the impact we are having, and I think that each passing day brings us closer to cures. Unfortunately, each passing day we lose 3 children to brain cancer. We have no time to lose. Please let this be your call to action. Not just to wear grey or talk about brain cancer. To quote Gabriella Miller, who died at just 10 years old from brain cancer, “Talk is Bullshit. We need action.” Find a way to put a few dollars a month toward brain cancer research with one of the CBTTC foundations. I promise you we will make you proud of your efforts.
* Please note that I am a mom and advocate and these are my opinions, not medical advice.
**There are exceptions to everything, and please know that I am not trying to belittle any cancer patient’s journey. I’m merely highlighting that it is relatively rare for other cancer patients to deal with the multitude of symptoms that brain cancer patients endure.
For additional information about Dragon Master Foundation, visit www.dragonmasterfoundation.org, email email@example.com or connect through social media on Facebook, Twitter, Instagram and LinkedIn.