My journey with cancer is an open book. Literally.
I’ve put myself out there since a CLL diagnosis in 1991. There is a peer-reviewed, published case report on my clinical course. In addition to my book, n of 1, I’ve written well over 100,000 words on this blog covering where I’ve been, where I’m headed, and shared my undiluted perspective on all things cancer prevention, cancer treatment, and integrative oncology.
The Network of Enigmatic Exceptional Responders (NEER)
NEER is a study led by Harvard’s biomedical informatics department that is investigating a group of cancer survivors who are outliers—those who have had exceptional clinical responses against challenging odds.
Let’s say an immunotherapy study comprises 25 human subjects with 24 having no response to therapy, and ‘one’ patient has a complete response—the tumor is eradicated and this person achieves remission. These are the people NEER studies: exceptions—each an anomalous member of a collection of outliers.
Instead of looking at the one subject as an aberration or anecdote, and dismissing that subject outright—therefore discharging the therapy itself as an abject failure—NEER has created a sophisticated bioinformatics platform to investigate the ‘whys’ and ‘hows’. This is a big deal, especially for advocates of integrative oncology and lifestyle, because all of these interventions and activities are included, albeit mostly retrospectively, during the ongoing data collection process.
I am an advisor to, and a participant in, this study. I have also recruited several people into the study who have incorporated lifestyle measures and integrative oncology into their personal journeys.
I’ve happily provided permission to NEER and its principal investigator Isaac Kohane, MD, PhD, chair of biomedical informatics at Harvard Medical School, and his team, to do the big data deep dive into my case: whole genome sequencing, microbiome testing, tissue biopsies—whatever they want, really. This is because…
All this data is captured and stored in a deidentified way—there will be no connection between the data and my name. To date, all I have shared by way of their rigorous intake and follow-up questionnaires strictly adheres to HIPAA privacy procedures.
But for me it doesn’t matter if I was or am identified. I’ve provided permission to utilize, and even commercialize, my genetic and biological materials, with no direct financial benefit to me. I couldn’t care less if my tissue, blood, mutations… whatever, are made public with my name attached.
Moreover, in service to others, I have no issue with formally making my medical records open access—fully identified. Until then, any legitimate investigator or organization that wants access to my medical records from Harvard’s Dana-Farber Cancer Institute or from Johns Hopkins just has to ask my permission.
Cancer Privacy is Your Decision—Here is Why
We are each unique: the malignancy we may be hosting; our physical, emotional, and psychological status; our employment and socioeconomic status; our familial situation; our professional positions and various sensitivities of our employment or leadership prominence; and our overall needs, beliefs, and goals.
Me, I’m the open book I’ve described above. Included in those I’ve coached: the Fortune 250 CEO, the sales executive, and the single mom with three small children, each has a different situation which dictates a specific level of privacy.
The CEO wanted to avoid the possibility of negatively influencing his standing on Wall Street. There was a risk that the stock price and market cap could get hit. He shared his health situation with his corporate director colleagues, but not the thousands of rank and file employees across his various companies. He also informed his family. This person is alive and doing quite well today, still at the helm of his family’s company.
(For those wondering: “Under the SEC rules there are certain things they are required to disclose, like certain types of material litigation, but there is no “health-of-the-CEO” disclosure requirement. Just because its material doesn’t trigger an automatic duty on the part of a company to disclose the information.”)
My executive client was diagnosed the same week he was promoted to head of sales at a technology company. Hard charging and successful, he chose not to tell anyone who reported directly to him that he was hosting a malignancy and undergoing cancer treatment. He did share his situation with his immediate supervisor, and swore her to secrecy not to share his personal health situation with company leadership.
Of course, there was no way to formally keep his boss from sharing his situation with upper management—or anyone else for that matter—but she covered for him. When he needed a couple days off here and there to get through his treatment, she was understanding. He sailed through treatment and made a full recovery—about 10 days of leave over a four month period.
The single working mom chose not to tell her five, seven, and eight year olds that she was ill. After recently losing her mom to the same disease, she did not want to burden her children. She was fortunate to have a solid support team in place—her A-team—providing coverage for transportation needs, after school care, and meals prepared and donated by others. She also shared her situation with her kids’ school counselors and administrators, who were a tremendous support.
Her metastatic disease is in full remission today and she is watching her family grow and thrive.
Some folks hosting cancer are simply private people—no matter what point in the cancer journey. They choose not to share their situation with employers, friends, or immediate family. Some do not tell their spouses and partners early on after diagnosis. The sharing decisions—who, what, where, when, why—are choices.
Decisions and Responsibilities
Whether for clinical studies like NEER, or sharing with family, making well-informed, pragmatic decisions around privacy can make a profound difference for both those hosting cancer and for others in their everyday lives.
Sometimes our decisions are rational. Other times, not so much. Privacy decisions can be based on fear, or simply not wanting to upset people—family and friends alike.
Many folks want to avoid getting special attention, like being pitied. It may seem logical to avoid that special attention, but it can cause unnecessary suffering through lack of support. Social isolation is rarely a positive contributor.
It’s important to note that, in most cases, people with the largest and most engaged, deep social connections—family, friends, co-workers—tend to have a better experience getting through treatment itself, and an easier time recovering. Like most life experiences—the ups and the downs—the larger the network of healthy connections, the better the outcome.
There are two separate aspects regarding privacy:
- Considerations as to whether you keep your situation private, why you decide on that privacy, and if and how you keep your information private from friends, family members, or employers.
- Whether you trust how patient information is typically handled, and if you understand how that information is protected—here in the U.S., it’s HIPAA—regarding every day clinical appointments and/or research studies.
My decision to share has been made; I am a somewhat public figure making my personal story and data available to those interested.
But for the majority of people, Cancer Privacy is a deeper subject requiring more thought than, at first glance, one might think.
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Image credit: Bigstock.com/lSerg