In Our Cancer Moonshot, Don’t Forget Earth

In Our Cancer Moonshot, Don’t Forget Earth
January 20, 2016 Alene Nitzky

IMG_4745In his final State of the Union Address, President Obama introduced the moonshot to cure cancer. A cancer moonshot is an admirable goal, no question.

As we shoot for the moon, let’s not forget those stranded here on earth.

When Nixon announced the War on Cancer in 1971, it created a media culture of war clichés that are still with us today. We still see, “Lost a fight”, “Fought a battle” in so many stories and obituaries of anyone who died from cancer…and now we have to go to the moon to keep fighting?

Words are important. When the public hears thousands of times, “so and so lost the battle”, they begin to associate cancer with losing. Our culture does not like losing, they like winning. They turn away from cancer, avoid it, because they don’t want to be associated with losers.

When this happens, there is more avoidance, fear, ignorance, and discrimination. Despite the decades-long “awareness” campaigns, we don’t talk openly about cancer, even now. People still bury their heads in the sand, refuse to inform themselves, and deal awkwardly with friends and family members who are diagnosed.

Given that more than one in three people are expected to have cancer at some point in their lives, can we really afford to be this ignorant? We have cancer-related problems that go beyond the fact that it hasn’t been “cured”. I don’t hear anything about taking a moonshot at them, though.

While we shoot for the moon, what more can we do here on earth?

  1. Get beyond the “awareness” campaigns. We’re aware. But are we informed? Awareness is completely different than informed-ness. Sure we know a lot more about cancer than we did in 1971. But public health education efforts have not taken the public much further beyond the sheer terror at the news that they or someone they love has cancer. Educate the public, beginning in the schools, about cancer so that it is something they can discuss.
  2. Quit oversimplifying “cancer”. The public needs to understand that cancer itself has a wide range of types, forms, presentations, treatments, and outcomes. They need to understand the differences between prevention & early detection, risk & actual numbers, cause & effect, genetic versus hereditary, and all of the terms that get thrown around loosely without being explained in ways they can apply to their own health.
  3. Improve the health, media, and science literacy of the public so they understand that just because one study finds something interesting, that one study does not mean you change your lifestyle, behaviors, and spending habits around it.
  4. Get beyond “pink think”. Supporting people with cancer is not about donating to a mysterious fund that makes the money go to some mysterious place… it’s about directly supporting the people in your life and your community who have had to deal with cancer and the ongoing effects of treatment.
  5. Not only do we need a cure for the diverse disease of cancer, we need a cure for cancer treatment. Cancer treatment creates its own set of long-term and sometimes permanent effects that can affect every day function: neuropathy, fatigue, cognitive difficulties, physical disability, psychological trauma, lost dreams, lost careers, lost relationships, financial hangovers.
  6. In addition to finding ways to stop creating future cancer survivors who have disabilities and adverse effects from treatment, we also need to improve things for the 15 million or so survivors who are now living with those effects.
  7. We need the public to be educated about the effects of treating cancer, not to create fear, but to promote understanding, empathy, and improvements. Our communities and workplaces need education on how to assist people with cancer.
  8. We need to figure out how make treatments and care affordable, including the ability of caregivers to do their work. It’s bankrupting our healthcare system and too many people’s personal finances. It’s funneling gigantic sums of money into the pockets of people far removed from the patients who pay for it, who will never see the devastation that ensues.
  9. We also need the public to stop treating people who have had cancer as cancer. These are people. They have lives. They are not synonymous with cancer. Or death. Don’t assume they are going to die soon.
  10. Talking about people living with metastatic cancer, especially Stage Four. As of 2016 there are somewhere around 15 million cancer survivors in the US and it’s very difficult to find statistics of people living with cancer that has spread. Because of advances in treatment we now have a large community of people living with cancer that has spread.
  11. It’s difficult to find statistics on the number of people living with metastatic cancer outside of the well-organized breast cancer community. We need to put more funding into improving the lives of these people, and not dismissing them. Many people, but not enough of them, with advanced cancer continue treatment, start new treatments when the old ones fail, participate in clinical trials, and continue their lives, doing everything they can to maintain good quality of life, sometimes for many years, even decades.
  12. Get the medical community on board with people’s everyday lives and struggles. When I read this article and the first comment, the palpable anger of the commenter is something not uncommon to people who’ve been through treatment when they feel like they were not adequately forewarned of the lasting consequences.

Simply stated, doctors are not trained to address the lasting effects of the treatments they dole out. We need to turn this into an opportunity for action, for the medical community to partner with other professionals. Instead of medicalizing cancer survivorship after treatment, we need our medical professionals to look at these issues as something other than a diagnosis.

We need action that stays down to earth to help the quality of recovery for people who have been through it. It is not acceptable for a cancer survivor to go back to the doctor for a follow-up visit complaining of lasting fatigue or difficulty concentrating, and be told, “You’re not alone.”

Doctors are people, too. They cannot be expected to have all the answers. I would like to see medical education address this, and teach doctors to admit their human-ness, emphasizing emotional intelligence and the ability to relate to a patient as someone who has a life outside of medical treatment.

I don’t have the answers to this, but one observation I’ve made is that it would help if the medical community would acknowledge to themselves and their patients that they don’t have all the answers and that collateral damage is a fact for many people, and it may appear months or even years after completion of treatment for cancer.

Instead of doctors burying their heads in the sand, saying “there’s no evidence for that” when they don’t know what to do, they should take the patients’ reports as anecdotal evidence. They must start listening to patients, taking their complaints seriously, and referring them to the many professionals in their communities.

These unacknowledged professionals can pick up where the doctors finish their important work of treatment, relieving the feelings of fear and abandonment so many cancer patients feel when treatment is over, as they find their way back to living their lives.

Alene Nitzky, Ph.D, RN, OCN is a cancer health coach, oncology nurse, and founder of Cancer Harbors™, a soon-to-be available online service to help cancer survivors regain quality of life through skills and knowledge to improve everyday living.

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