Cancer Caregiver Knowledge Resources for Geeks


Robert Dorsett

March 5 , 2007

Update: April 30, 2009



Both of my parents had cancer. My mother had breast cancer on two occasions, separated by 20 years, as well as esophageal cancer. My father had prostate cancer. I was also put through the full diagnostic process, and eventually surgery, for a concretion, and 15 years later for a non-malignant parathyroid adenoma. Over the years, I've put together a reading/resource list, which follows.

A general caution on the below is that different patients have different needs. My personal view on medical treatment is that the patient is quality control for the medical staff. The medical staff are consultants, the undeniable experts as to the technical aspects of care, but the patient needs to be in the driver's seat. That means the patient has to be really well educated, organized, and alert. While I have yet to meet a medical professional who is anything but competent and committed, the medical SYSTEM can be detrimental to survival. Hence the need for patient education and a rethinking of roles and responsibilities.

The problem is that for the person who has cancer, blunt language on treatment and prognosis can be counter-productive, such as frightening or demoralizing the patient and causing him to miss treatments or avoiding procedures--which can end up killing him. There are also issues with patient preconceptions of the disease, the level of knowledge they bring into it (in Arab society, for example, the "C" word is avoided altogether, preferring "tumor"), their age (older people seem much more diffident to the pros), etc.

The learning curve can also be quite steep, not a welcome proposition as one is going through treatment. In some societies, such as Japan, the doctor is the total expert, and the notion of the patient being his own advocate can end up with the patient being dismissed from the relationship. In contrast, in the West, a much more sophisticated "partnership", or at the least customer-focused relationship system has been slowly evolving over the last 25 years, after several public backlashes against high-handed medical behavior.

To further confuse things, non-scientific nonsense like homeopathy provides the poorly educated with hope the medical system sometimes can't offer. "It's natural so it's good" goes the thinking.

So in effect, patients (and care providers) can range from those who aggressively want to participate in the management of the disease to those who don't want to think of it at all and who virtually defer all decision-making to their physicians.

Regardless of the mental state of the patient, in my opinion, the caregiver (relative/spouse companion of the patient) has no such excuses.

Disclaimer: I've no connection with any of these resources except as a satisfied lay customer. Do not confuse my authoritative style of writing with in any means a professional competence in the area in question — I'm just a computer geek. This is just what worked for my family and myself. My father died of Alzheimers 9 years after his diagnosis. My mother is 29 years out of her first cancer, 9 from her second, and 5 from her third. The first, statistically should have killed her by now, as should the third. All I'm arguing for is an informed, collaborative patient/doctor relationship.



National Comprehensive Cancer Network. This provides authoritative and current flowcharts for cancer diagnosis, treatment, etc.

US FDA prescription drug info. Authoritative and fast drug info when you can't find the manufacturer's site.

US FDA info on cancer-specific drugs, cancers, etc. Drug information, cancer info for professionals and patients, etc.

Pubmed: General medical search engine.

eMedicine. My favorite medical info site. Tons of 20,000' flyovers of various maladies.

Texas information on physicians: See if your doc is a quack. Most states have something similar.



Print books on cancer range from the spiritual to the functional to encouragement to the scientific. In the scientific realm, texts can range from 3th-grade level brochures to incomprehensible tomes on genetics. After reviewing a LOT of texts, I found these particularly useful in obtaining a functional understanding of cancer and treatment options, without getting bogged down in low-level detail or completely missing the point.

Core Reading

The Biological Basis of Cancer by McKinnell et al. Just came out with its second edition. Fantastic overview of cancer biology, specific types, etc. Not too complex, but not brochure fluff either.

One Renegade Cell by Robert Weinberg. This is a fairly dense, short monograph, but it traces the evolution of understanding of cancer. Turns out cancer's pretty hard to get.

Biology of Cancer, also by Robert Weinberg. This is a full undergraduate text on cancer, fleshing out many points that were necessarily abbreviated in One Renegade Cell. Nicely illustrated.

The MD Anderson Surgical Oncology Handbook. Feig et al. If the treatment involves surgery, this helps outline the options, staging, etc.

More Cancer Stuff

AFCC Cancer Staging Handbook. If you have the materials above, you can probably skip this one. Reviews staging standards and how they're applied to various types of cancer. For the general public, Wikipedia's probably a good resource for general cancer info and staging info.

Medical Education

These books deal with medical/physiological foundations and can be handy references.

Merriam-Webster Medical Dictionary. A light-weight medical dictionary, but cheap. Useful for lay purposes.

Color Atlas of Anatomy. A very nice photographic atlas of human anatomy, based on cadavers. This might not be appropriate for some sensitivities. For those, there's the traditional Gray's Anatomy, a monumental late-19th-century tome with great line drawings. For a 20,000'-level review of anatomy, I liked Human Anatomy in Full Color by John Green. A short (36 pp), vivid, and inexpensive look at anatomy.

Textbook of Medical Physiology. Fascinating look at physiology.

Pathologic Basis of Disease, Robbins et al. Looks at the physiological basis of disease.

General Medical

Atlas of Pathophysiology. This is a fun little book. Breaks up a ton of ailments and accompanies them with beautiful artwork. Probably designed for patient education.

The Merck Manual. A hypochondriac's wet dream, this outlines the clinical presentation of many many many diseases, their etiology, and outcome.

Harrison's Principles of Internal Medicine. A wonderful medical textbook, an excyclopedic presentation of disease. When my father died at UTMB of Alzheimers, I was surprised to note a dogeared copy of this was literally chained to the desk in the staff's lounge. This book makes one want to go to medical school.

Handbook of Interpretation of Diagnostic Tests, by Wallach. I've long had an interest in the relationship of diagnostic blood tests and disease. When I was a lad, I was exposed to the first generation of automated blood evaluation systems while helping out a professor of medical technlogy, Royce Lairscey, best use his Apple IIs for medical education at UTMB. Totally fascinating stuff. At any rate, this book didn't quite make it for me. Great, but it led me to the parent text (many medical books appear in a text and "handbook" format). That was better, but still not there. I found nirvana in Clinical Chemistry: Principles, Procedures, and Correlations, by Bishop. The basic difference in the two approaches is that Wallach's books seem more targeted at clinicians who are working from a symptom or diagnosis, while Bishop's book is more a survey of the tests themselves and what they mean, so for me, the geek at the time, that was preferable. Different strokes for different folks, at different times. They're all good.

Physician's Desk Reference/Nursing Drug Handbook. The PDR is a classic, but these days, why not just download the drug sheets from the drug companies themselves, if you're comfortable going into the sacred "for medical professionals only" sections (obviously designed by lawyers)? The PDR is expensive, and weighs a ton. The Nursing Drug Handbook is much more compact practical, and fun to browse through. Or even the FDA site, mentioned above. Go to a Barnes and Noble and make up your own mind.


Life: The Science of Biology. I was totally demotivated from pursuing any biological-science or medical career by my high school experience (early 80s). Measuring performance by the amount of Latin or trivia one can memorize. Biology never quite struck me as a science (defined by theory and repeatability) as much as a survey study. Physics before Newton. Things are a lot more sophisticated now. I ran across Life in an MIT OpenCourseware description. It's an engaging freshman textbook. Biologists have found their "science" in the form of genetics.

Medical Care

These two books deal with the crisis of care in the medical System (big-S). Not really on the whole insurance/payment disaster, but more on how when everything's working as it should, how people die:

Internal Bleeding: The Truth Behind America's Terrifying Medical Mistakes, by Wachter and Shojania. Sophisticated look at errors in the medical System, ranging from the need to automate prescription management to the need for "crew resource management" techniques to avoid surgeons cutting off the wrong limb.

PC, MD, by Satel. Lighter-weight version of the issues covered by Internal Bleeding. Has horrifying anecdotes on the costly abuse of emergency and intensive care by human bottom-feeders in San Francisco.



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Take Control.