If you get a cancer diagnosis you need to actively engage in your treatment, or else bad things can happen. Putting all your trust in the medical system—or avoiding the medical system—might have worked for you in the past, but it can be fatal with cancer. With a cancer diagnosis, it’s increasingly important that you understand the unique testing and treatments that are exploding and available to you, to participate in choosing the best treatment options for you, and to maximize the positive impact of behaviors only you control, such as diet, exercise, rest, attitude, and adherence to doctor’s orders. You cannot make informed, educated decisions about your care or navigate your care treatment, unless you actively participate. For example, your doctor may recommend an invasive treatment like surgery or chemotherapy, which are standard, when you have other, less invasive options, but are more experimental. You need to personalize your treatment by gathering diagnostic data and identifying targeted treatments unique to you, advocate for access to the latest care options, and learn about and follow guidelines for a healthy lifestyle.
Engage in Your Own Treatment
You Need to Actively Engage in Your Cancer Treatment
- You could miss starting with new, less invasive life-saving options, e.g., clinical trials, targeted therapies, off-label. Instead, you will start with the standard of care: tried and true, but with harmful side effects.
- You could miss personalization. You won’t get your tumor sequenced unless you ask.
- You could miss integration (oncology, nutrition, health history, meditation, acupuncture…)
What Happens When Someone Gets a Cancer Diagnosis?
- They and their family are overwhelmed by emotions and face a very complex set of treatment decisions.
- When they turn to the medical establishment, the services are often hard to access, slow, and not personalized.
- The treatments are biased for the tried-and-true standard of care, which is the old, usually invasive treatment (surgery, chemotherapy, and radiation), rather than the newer, targeted, less invasive treatments (such as immunotherapies).
Treatment Includes Activities to Attack the Tumors and Strengthen the Defenses
Attack the Tumors
- Molecular attacks
Strengthen the Defenses
- Diet, nutrition, supplements, cannabis
- Exercise, acupuncture, massage
- Mind/spirit, attitude, meditation, love, support
- Immunotherapy, CAR-T, TIL
Why Is It Hard for Someone with a Cancer Diagnosis to Engage with Incumbents in the Healthcare System?
|The Individual Comes With||Providers, Regulators Behavior||Pharma, Med Device Companies Behavior||Payers Behavior|
|Goals||Solve my problem now||Do no harm: prove safety first, then efficacy; control the process||Maximize profits; protect proprietary innovations||Minimize costs; retain members|
|Method||Find patients like me: what has worked and hasn’t? “N of 1” trial, what’s best for me||Standard of care based on solid evidence -- randomized clinical trials (batch)||Invest in therapies that have the biggest market potential||Only reimburse for therapies with demonstrated results; realize long-term benefits for investments|
|Data||More is better; privacy, notify if new therapies||Proprietary, hoard||Proprietary, hoard||Proprietary, hoard|
|Effect||Fast, agile, continuous learning||Start with old, well known approach, decades to update standard of care||High prices for new therapies, potentially useful data not shared||Deny reimbursement for new treatments; avoid reimbursing for services with long-term paybacks|
|Risk||Seduced by new approaches without supporting scientific evidence; weak emotional base, finances, or education||Biased to avoid any bad patient outcomes (even if offset by many good patient outcomes)||High prices lead to government regulation||Denial of reimbursement for services that are less costly over the long term|
Conventional Wisdom about Patients vs. a Contrarian Hypothesis
- Unwilling or unable to spend much money on their care (it needs to be covered by insurance)
A Contrarian Hypothesis
A segment of people (e.g., those facing a death sentence) are:
- Knowledgeable (they start that way or educate themselves)
- Very engaged, impatient
- Able to spend, organize funding
Why Do Some People with a Cancer Diagnosis Want to Actively Engage in Their Treatment?
Samuel Johnson: “Depend upon it, sir, when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully.”
The current system isn’t fast and agile enough for people with a death sentence.
- They are scared, depressed, anxious.
- The clock is ticking.
- It’s overwhelmingly complex.
- Solve my problem now: willing to try “N of 1” experiments.
Move from being at a loss of control to being a leader in your fight for life
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