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12 Useful Steps if You're Diagnosed with Cancer
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When I circulated updates about receiving 10 weeks of daily radiation for prostate cancer, some of you asked what steps I'd found useful when I learned my diagnosis, mentioning that one of your loved ones or you yourself would find the information helpful.
I received so many comments about the helpfulness of my list I thought I might put it on the web.
I want to emphasize that I don't think that there's a "right" way to do it -- different people have very different ways of going about making such a personal decision. I pass the along the following only as steps that I found helpful.
- My first step when told I had cancer was to get a second opinion. I didn't want to get a treatment that was based on someone mixing up biopsy samples, misreading a slide, or keying in the wrong computer code.
- I found it helpful to consult with a variety of specialists, not only those doing the kinds of interventions I was considering (various surgical interventions, brachytherapy, different forms of external beam radiation) but also oncologists who may not have a tendency to be cognitively committed to or biased toward any one kind of intervention.
- Reading the original research studies on the effectiveness and risks of the various treatments opened my eyes to issues and information I did not find in most of the more general books and articles. I'm guessing that almost all of us have discovered the serious discrepancies between original research reports and the secondary literature, both professional and popular.
- Talking with others who had been through different kinds of treatments for cancer, even knowing that my experience with the same treatment might be unlike theirs, was revealing and helpful. Someone who has "been there" can bring alive and make immediate a treatment's progression, uncertainties, and side-effects -- aspects that can come across as abstract, distant, and unreal when described in a brochure or professional article.
- Each time I found myself impressed by the possibilities of a particular treatment, I actively searched for critiques so that I could carefully weigh the full range of benefits, drawbacks, and risks. I was often surprised (though in retrospect perhaps I shouldn't have been) by the degree to which facilities, authors, and organizations that were strong proponents of some particular intervention would fail to mention significant risks and side-effects as well as negative research findings about their favored approach. I'm guessing that in some cases this was mainly a case of confirmation bias: Our human tendency to recognize, value, and focus on findings that support our favored beliefs or hypotheses, and ignore, discount, deny, tune out, or find ways to explain away data that don't fit.
- I gave myself time to explore options, gather information, and keep looking at it from different perspectives and turning it over in my mind before arriving at a decision that I saw as the best possible path for me, that I felt comfortable with, that I believed gave me the best chance. This unhurriedness turned out to be crucial. Over the course of my investigations into numerous forms of therapy, I went from reasonably sure that surgery was the best option for me, to reasonable certainty that brachytherapy offered me the best prospects, to -- finally! -- confidence in a 10-week course of daily treatments with Image-Guided Intensity Modulated Radiation Therapy (IG-IMRT).
- Choosing the doctor and facility was a separate issue from choosing the treatment. I looked at the level of experience and success rate the doctor and hospital had with this form of treatment (both in the data kept in the hospital and the data they published in peer-reviewed journals), but I also paid attention to how I felt in that setting. I wanted to make sure I trusted the people (with my life and health) and felt good about the over-all approach. This was key. All of the people were wonderful to me: Each person from the docs to the receptionists to the aids knew my name from the first visit on. They went out of their way not only to help us patients but to help each other. There was no arrogance or territoriality. I asked my doctor if I could have a copy of some records, and he asked me to follow him down the hall so that he could make the copies himself rather than asking someone else to do it. And great (sometimes outrageous) humor sensitive to each patient's needs and resilience.
Focusing on the question of what treatment delivered by whom in what setting was the best fit for my needs and wants and gave me the best chance took much of my time and energy initially.
But a few other questions seem worth considering right after a cancer diagnosis.
Here are a few that feel most important:
- Who, if anyone, do you tell about your cancer -- only your immediate family? your closest friends? your employer, your employees, or your colleagues? your clients?-- and at what point do you tell them and how do you tell them. This is your decision to make as you see fit. Different people will make very different choices depending on their circumstances and what is right for them. How you disclose your condition is worth some thought -- for many reasons this may be harder on your loved ones than on you.
- How do you need to adjust your schedule not only in light of the time you'll spend in treatment but also given your physical and psychological strength and energy? For me, I had an hour-train ride each way to the radiation treatment each day for 10 weeks. An additional challenge has been a persistent anemia that brings along fatigue.
- How, if at all, will your experience with cancer and treatment affect your work? If you're a therapist, counselor, or coach, for example, will you begin feeling differently about clients depending on whether they have cancer (or a similar medical condition)? If you do forensic work, could your experience with cancer affect, however subtly, your view of someone you evaluated who is applying for disability due to a medical condition or who has a terminal condition?
- Are there documents that you've never gotten around to preparing (or updating), such as:
*professional will (a therapist's guide for preparing a professional will is online at:
*advance directive (or living will.
Now might be a good time.
(I've put some resources in this area online at:
- Some people like to go it alone, but others of us know we need help. From the smallest things (e.g., running errands, food preparation) to the largest, consider realistically what kinds of help you might need -- from loved ones, friends, and coworkers; from the doctors providing your cancer care; from the clergy or other sources of spiritual support; from therapists, counselors, or coaches; or from anyone else. Then ask for that help clearly and directly.
Whether any of these steps are right for you, I hope they are helpful in your thinking through what you want to do.
For those who might find it useful, I've put online collections of recent treatment research and other resources for each of 4 kinds of cancer -- Breast, Prostate, Lung, Colon -- along with recent research on both "Psychological Interventions for People with Cancer: Therapy & Self-Help" and "Cancer & Exercise: Prevention & Recovery."