Today is #worldcancerday and forgive me if I’m a bit cynical. But looking through Google’s news feed on the subject, I can’t help but wonder if today is the day journalists dug into their pile of press releases to see which ones mentioned cancer, then just regurgitated the information without doing any real research or asking meaningful questions.
Don’t get me wrong. There’s a lot of really great news out there about cancer and the potential for a cure.
But there’s also a lot of craziness that needs debunking. I get why spreading the misinformation is so popular. No one wants to think that there’s nothing they can do to protect themselves from this insidious disease. The truth is though, you really can’t: 85% of all cancers are caused by pure genetic bad luck; 5% are also the result of bad genetics that are known, such as women with the BRCA gene who have a family history of breast cancer like Angelina Jolie, who famously had her boobs cut off rather than risk a chance incurring of the disease. The remaining 10% of cancer cases can be prevented, namely by not smoking. To date, the only known cancer-causing substance is nicotine.
Nonetheless, today’s headlines are filled with inaccurate cautions and prevention strategies. This story claims that if you just stay away from certain foods or certain food packaging, you’re out of the woods. I don’t dispute that carcinogens may be found in the products mentioned. I’m just saying that there’s no scientific research that proves they cause cancer. We’re exposed to carcinogens everyday. And theoretically, enough exposure over time could lead to cancer. It’s just that at the moment we don’t know how much exposure or how much time, which makes it hard to prevent.
Then there’s this CNN story that somehow determines that a correlation between obesity and cancer somehow makes obesity a cause of cancer, particularly among millenials. Let me explain something about correlations and how they’re derived. You take one number, such as how many people are obese and plug it into a fancy formula with another number, such as how many people have cancer. If it produces a high percentage – say 80% – then mathematicians say there’s a correlation. So let’s say you take the number of pizzas sold at your local pizza place on Superbowl Sunday and match it with the number of kitten videos posted on #Caturday on Twitter and plug it into the same formula to find an 80% correlation. As a rational human being, do you really see a correlation? And can you extrapolate from it that pizza orders on Superbowl Sunday cause out-of-control cat video postings on Twitter on a given Saturday?
MD Anderson’s Dr. George Chang, who’s quoted in the CNN story, says it best: “The study was not set up to establish causation. We know there are many factors that are associated with both obesity and cancer, such as lack of exercise and poor diet. How much each of those factors contribute to cancer is less clear.” Somehow that information is buried deep within the story.
Then there’s this well-meaning piece that confuses early detection with preventable deaths when what they’re really trying to prevent is costly treatment.
“By detecting cancer at its earliest stage, we seize the greatest opportunity to prevent millions of avoidable deaths worldwide,” the Union of International Cancer Control’s chief executive officer Dr Cary Adams said. But read a little further and really what he’s suggesting is that detecting cancer can buy five year’s worth of life, which really isn’t a cure and certainly doesn’t prevent millions of deaths. Perhaps prevents millions of premature deaths would be more accurate.
The real news on World Cancer Day is what’s being done to cure cancer or at least make it a manageable disease. Unfortunately that information hasn’t percolated through Google’s news feed, although it did make my inbox. Take for example this update from the Cancer Research Institute on what’s on the horizon for immunotherapy. As CRI’s review notes, if diet has any impact on cancer at all, research shows it’s through a healthy gut microbiome. That means eating more yogurt, high-fiber foods and fermented foods or drinks such as kimchi or kombucha. Somehow that point has been missed by all the “prevention” and “eat this not that” enthusiasts.
When the President signed the Right to Try law at the end of May, I suddenly went from persona non gratis as a #preexisting condition to a terminally ill darling whose life Congress and the administration were gushing to help save.
That was until yesterday when I actually tried to use the law to my benefit.
Maybe you’ve heard of this thing called “Precision Medicine” which is ushering in a new age in cancer treatment. Thanks to DNA decoding, cancer patients like myself can have their tumor’s DNA decoded to see if it offers any new information for treatment options.
In my case, new pathology shows my tumor is 100% androgen positive, in addition to being estrogen positive. That means the tumor, now deprived of its estrogen feast because of the numerous anti-estrogen drugs I’ve been on, is now slurping down androgen to survive.
The problem is the anti-androgen drugs on the market are so far only approved for prostate cancer, not breast cancer. There are clinical trials underway for breast cancer, but I don’t qualify for them.
That’s where the Right to Try law offered some hope. Its goal, at least we were told, was to give terminally ill people like myself the option of trying drugs that weren’t yet approved by the FDA for treatment of my type of cancer, but had shown promise. All I needed to do was sign an informed consent that said I am willing to serve as a guinea pig and accept all the risks that come with it.
I knew going into it there would be appeals and denials. One thing I didn’t expect was how cavalier my pharmacy benefits manager Prime Therapeutics would be. My oncologist scheduled a peer-to-peer appeal – where their doctors hear out her arguments over the benefits of this drug – to take place while she was on vacation. For whatever reason, they couldn’t make the call and rescheduled it a week later.
I’m only a terminally ill patient who’s not on treatment. What’s another week’s wait?
That appeal was schedule for 11 a.m. yesterday. When the panel failed to make the call, my oncologist’s team went to work tracking them down. An hour later the benefits manager sent an email saying the appeal wouldn’t be heard. End of story.
Obviously I was frantic. Didn’t they know about this Right to Try law? Certainly my patient rights have been violated. I spent the next hour looking for news articles, testimony, anything I could find about it. Finally, I found the text of the law. One, single page. I’ve never known a law to be written so succinctly.
When I read it I learned that it offers patients nothing, in fact it expressly states that it creates “no mandate or entitlement” for patients. The only thing it does is let drug companies off the hook should they agree to offer me the drug, it doesn’t work or I get some horrific side effects and want to sue.
This point was completely missed by the press coverage of the new law, which went to great lengths to talk to doctors who obviously don’t spend a lot of time with the “terminally ill” but were more than willing to talk about how innocents like myself were now sure to be duped or misled by the holy grail of a treatment promise.
Even the law as it’s written seems to see those of us who are terminally ill as frail, bed-ridden, desperate folks looking for some Hail Mary pass that will buy us a few days or a month of life.
Sorry folks, that’s Hollywood, not life. Most of us live quite active, robust – even athletic lives. The way we extend those lives is a series of running plays – drugs that we’re guaranteed at some point will stop working, but that have added days, months, sometimes years to our life.
The more drug options we have to stave off our disease, the longer we have to live. And hopefully somewhere in that timeline a more effective treatment comes online.
In order for a Right to Try law to be effective, it needs to address all the players – the drug companies, the health insurance companies, doctors, hospitals, patients, caregivers and researchers. And we need to see ourselves as part of a team whose goal is to create optimum health, quality of life and longevity. We need to lose this “us against them” mentality where the patient seems to be the biggest loser.
There’s a lot of reason to hope with what’s going on in the world of cancer. But what’s the use of any of it if patients can’t take advantage of the progress being made?
I’m pleased to share the second #MetsMonday featured post. This one is from Liz Johnson, blogger at Breast Cancer Conscript. Liz was diagnosed with metastatic breast cancer in February 2015, less than four years after her initial stage 2 diagnosis. 904 more words
While none of us can know how much longer we have to live, being diagnosed with an incurable cancer makes you start doing some math in your head.
In my case, estrogen-positive, bone mets only patients have a median lifespan of 8.6 months from diagnosis, at least according to the latest statistics. That means half of us die before reaching that number, and half of us live longer. It’s not an average, which would be near impossible to calculate. The National Institutes of Health barely counts those of us who have metastatic breast cancer. While we do know one of us dies every three minutes, we don’t know how long each one of us lived with disease before succumbing to it. We also don’t know the particulars, such as what stage they were when they were first diagnosed, the pathology of the cell or where the cancer lodged when it metastasized.
With Artificial Intelligence and machine learning getting into the game, we will soon be able to track that information and make a more reasonable guess. But for now, here’s the equation I’m toying with.
I have 8.6 years median survival. Research shows if I exercise, I can add 40% to that total. That gives me another 4.8 years. If I develop a strong social support system and have adequate access to a medical team who can answer questions, add another 5 months.
So far I haven’t been able to find any research that shows that diet directly affects lifespan (if anyone knows of a study, please share).
Based on those calculations, I have a median survival of 13 years and 10 months. I’ve already survived 3 years and 2 months of that.
On the plus side, being treated at a research facility like Memorial Sloan Kettering gives me another edge. There’s a very strong chance that the cancer research facility will be host to a Phase 3 trial of the next viable, life-extending treatment, which I’ll be able to get into.
That cuts out the six months it will take the FDA to approve the drug once the trial is complete, the year it will take the pharmaceutical company to get it’s marketing pipeline up and running to offer the drug to the public and the six to eight months it will take ASCO to announce it as a standard-of-care treatment and for health insurance companies to agree to pay.
That means I’ve cut at least two years off the time it would take me to have access to the treatment in a community hospital setting.
It’s not a perfect science, nor is it a perfect equation. But until Big Data has a better answer for me, at least I have a benchmark.
And every day the finding of a new study is announced, giving me another chance to add more time onto the clock.
Einstein was right, space and time are relative. limited only by the speed of light. With strides being made at an exponential rate, cancer research may soon catch up to light speed. At that point, the impossible becomes possible.
May 1 is a day of seduction.
Without fail, it arrives cloudless and sunny, warm and fragrant, casting off the vestiges of a cruel winter. Fear? Toss it out the window. Success is an open road looking for someone to tear it up.
I remember feeling that way 10 years ago, before the Nishisakawick Creek coughed up its sedge to form an island where its mouth meets the Delaware River. Back then there were a few scant sycamore trees that jutted up from the river, catching dead leaves and twigs in the rapid flow. There were no signs that the island would one day block the creek’s entrance, forcing the river to flow up instead of down. Had I seen it, I tell myself, I would have known.
But the truth is, we never really know life’s irony until it stares back at us from the page. And this story is no different. May 1, 2008, I started out on a morning of hope, launching a new business with my mother and father as partners. Sure, we had failed as a family unit. They’d divorced some 30 years earlier. But we’d learned from our failures. Time is a great healer, afterall. We were no longer mother, father and child, but adults who had experience in the world. Our business venture was destined to succeed.
As I made my way down River Road that morning, fire police detoured traffic onto Dark Hollow Road where I’d normally turn anyway. A sign, I was sure, that I was on a guided path. “A tree down,” I thought before losing myself in other mind chatter.
My mother would arrive late, complaining about a power outage that kept her from drying her hair. We huddled, vowing to knuckle down, make calls, do whatever it took to make this venture work.
Only now do I see the irony. Yes, a tree did come down, ill-timed, crushing my stepfather’s car and killing him instantly. Nine months later, my father would be diagnosed with lung cancer. Our fledgling business venture would be buried along with him. My sister’s crazy outburst at his funeral wasn’t inconsolable grief, but a softball-sized tumor lodged in her brain.
I’d pay only scant attention to the thickness I felt, like a jelly fish, in my right breast while showering at my father’s house after his death. “Perimenopause,” I thought, before my mind wandered to the mold in the grout lines and whether I could adequately clean them or would need a professional before I could put the house up for sale.
By then, a large tree trunk had lodged between the river sycamores and on a sun-baked August day if you looked real hard you could just about see the sedge that was starting to mound at their base, not even enough ground to stand on.
The next May 1 I was in Jacksonville, Fla. helping my sister navigate a life, post-cancer, that had taken a chunk of her brain and part of her mind, leaving her at times manic and at times depressed. It would be another beautiful, cloudless day. She would come and watch me run a 9K race, sitting on a curb, throwing up in the gutter from the mega doses of steroids she was on to reduce the swelling caused by the brain radiation. My mother was there. A new venture. Not of our choosing. One that had us chaffing life’s bit.
By the next May 1st I was bald and scarred, recovering from chemo and surgery. It was cloudless and sunny and my neighbor would insist on me joining her for a long walk with her dog along the river. The river sycamores were getting thicker, their trunks bent over nearly parallel to the fast flowing river. A piece of opaque, ragged plastic got caught in one of them, rattling in the wind like a sail.
The next May 1st, cloudless again, the plastic gone and with it wind from my own sails. I’d buried my sister nine months earlier and felt bewildered by the world I was now living in. By now, the sedge had settled, forming two islands just off the river banks. Enough ground to walk on with a sedge sandbar starting to fill in between the two shorelines where marshy grass grew. By summer, the marsh choked the creek flow, pushing the river northward along one of the islands.
I made friends with the kids who moved next door and we’d spend summers exploring the islands, looking for fossils, feathers and bones, making up stories about where they’d come from or how they’d landed there. Taking picnic lunches, throwing sticks for the dogs and swimming.
We built a bridge across the north flowing river so we could get to the island without getting our feet wet. Stone pile sculptures magically appeared, as did a stick hut where we could hide out from the strong, summer sun.
Three more May 1sts passed, all cloudless, sunny and warm. My hair grew back, and so did the cancer. The new drugs I was on fought it back until the river flowed north again that summer. By then, people were finding their way to sedge island to fish, leaving trash and the rotting spoils of their catch. Scrubby shrubs filled in between the sycamores. The kids were now older and we stopped our treks to the island, except for the dogs who still liked to walk its perimeter while chasing sticks.
Last May 1st was dark and overcast, and yet my mood was buoyant. I’d just come home from a writing retreat with plans to sign up for summer triathlons, eat healthy and start writing projects anew. I’d moved my treatment from a community hospital to a research setting. The new regimen was working and my options for future treatments, endless. I’d weathered the emotional move from one oncologist to another. The river flowed north, but I was used to it.
Here I am today, another May 1st. Sunny, cloudless, warm. Tonight I’ll go to dinner with my husband and my mother. We’ll talk about my stepfather, our losses and the ones we still have yet to endure. The sycamores on sedge island are now about 15-foot tall, standing nearly upright. A bore infected the aged ash trees along the river bank. Their rugged bark looks starkly naked against the backdrop of the maples now budding. On my way back from the river, I walked past pear trees in bloom. The pleasant fragrance caught me off guard. My throat tightened and tears welled up.
Life has turned upside-down. An author whose book on resilience got me through my darkest hour is now under indictment for enslaving a woman and taking photos of her. His words which once soothed now ring hollow. My family as I knew it has gone. Others have abandoned me, replaced by new friendships with deeper roots.
Yesterday I ran a half marathon with my other sister, her husband and my husband. We went out for lunch afterwards and my niece and nephew fought over who would sit next to me. This summer, I’ll take them to sedge island. We’ll look for artifacts and make up stories and I’ll show them how, defying all logic, the river runs north, but still it flows.
This post is dedicated to Stephen R. Hance, 1948-2008, who believed in me always. Pictured here, with my late sister Tracy Johnson Pollick. They always remind me that no matter what direction life takes, go with it, because even when a river flows up, it will eventually find its way down.