Why it matters when hope isn't really hope at all (and tips on reading articles about cancer research).
Hope is a tricky thing. Sometimes it serves a person with cancer well. It can make it possible to continue to go to treatments when physical symptoms are hard to live with, it can provide a moment of ease in otherwise difficult health diagnoses, and, in my experience, it also makes living with metastatic cancer slightly easier. When people ask why I call myself lucky and have hope, I point out the facts of my diagnosis and explain how fortunate I am that not only are HER2-targeted drugs available to me but that I have been responding well to them.
For me, key among the attitudes that help me live well with cancer are: 1. living with hope for my continued good response; 2. gratitude for the presence and development of drugs that work; and 3. appreciation for all the scientists and oncologists using their myriad skills and intellect to make my life, and the lives of every person with cancer, longer and better.
So, when someone or something steps into that space of hope and spreads false hope far and wide, it is disappointing and dangerous. It is dangerous because false hope minimizes and disrespects the patient experience, leading to distrust of scientists and doctors. It is disappointing because as much as I like to think the many players in the field of oncology want to do and say the right thing, too many times click-bait style quotes and statements make it into the public consciousness. Sometimes these statements are from people I wouldn't pay much attention to anyway, but other times they have the standing of respectable scientists and businesspeople behind them.
Imagine you live with metastatic cancer and the news all around you - on TV, in newspapers, on social media - is covering a story with this grab-my-eye headline: "A cure for cancer in one year!" You'd probably read it. This happened recently with a widespread report from an Israeli biotechnology company, which provided statements apparently in their press releases that made me raise both eyebrows. There was no way this wasn't an instance of, at best, premature statements or, at worst, exaggeration and false hope. Truthfully, I immediately consigned it to the pile of press releases designed solely to raise money for a company. This was about as far from "hope" as one can get.
If you are living with cancer or love someone who is, I urge you to learn to read such news stories with a critical eye. Consider, for instance:
Who is telling the story? I have several personal red flags, including small pharmaceutical companies that may not be giving the complete picture in an effort to either increase the likelihood of capital investment or outright purchase by a larger company.
Why is the story here? A story about drug development on the science pages of a prominent supplier of such news can provide reassurance and balanced information. However, a story online where the main driver seems to be maximizing "clicks" does not get my trust. In such a case, I question the news supplier (for instance, The New York Post), the reporter (why he/she isn’t asking for data) and the company/person providing the information.
What is the science? What was studied? Was this a clinical trial? How many people were on the trial and for how long? Are the results published in a peer-reviewed journal? In the case of the Israeli story, the scientific facts just don't line up with the cure-within-a-year promise. For example, a single study was conducted only in mice. The likelihood that a cure could be developed within a year with a starting point of a mouse study is so remote that I can't even fathom reporters believing it. Drug development takes years and years. Clinical trials, which would have to happen, for oncology drugs from Phase I to approval have a success rate of just 5.1 percent. Could this specific research someday result in a cure for someone? Sure. But it is way too soon and way too irresponsible to be stating that it will.
Is this false hope? What does my gut reaction tell me? Yes, I ask myself this every time because the road to effective treatments is long and perilous. I want a cure just as much as the next person living with Stage IV cancer, but I don't want to be lied to. I believe scientists are largely super-positive and optimistic people— they want their research to save lives. I can forgive a lot of scientific hyperbole (but not disregard of patients and treatment side effects) because of that, but it won't stop me from reading any story about cancer cures with a very critical eye and a lot of questions.