More Informed Choices. Credible Online Sources With No Agenda.
Research and Education on Cancer Treatment Options
Serving Patients, Caregivers and Medical Professionals Since 2001
This quote is from It's Not About the Bike: My Journey Back to Life, by Lance Armstrong with Sally Jenkins (page 273).(1) Let Go of All Notions of Certainty
“Anything's possible. You can be told you have a 90-percent chance or a a 50-percent chance or a 1-percent chance, but you have to believe and you have to fight. By fight I mean arm yourself with all the available information, get second opinions, third opinions, and fourth opinions. Understand what has invaded your body, and what the possible cures are. It's another fact of cancer that the more informed and empowered patient has a better chance of long-term survival.”
You will do yourself and everyone involved with cancer a huge favor by letting go of all notions of certainty. One especially futile (although natural) question to ponder is “how much time do I have left to live?” Cancer has extremely few black and white answers and an infinite number of questions. It is a frustrating fact of life but that is the way it is at this time. The sooner you can accept the reality of ambiguity, the more at peace you are likely to feel,so you can enjoy whatever life you have made. This acceptance can also enable you to make clear-headed decisions about what you really want and how to best get it.
(2) Own Your Treatment Plan.
You have to take responsibility as your own advocate. This means knowing your options, their “costs and benefits” (meaning risks, quality and quantity of life that seem probable after treatment, stress on you and your family and total financial costs).
It is always wise to work with an oncologist to develop a treatment plan that you understand and choose, rather than passively relying on anyone else to do this for you. It is critical that you understand as much as possible about your treatment options. This can be time-consuming, emotionally overwhelming and frustrating for everyone, especially the patient.
(3) Get the Most Accurate and Detailed Diagnosis Possible.
YCS recently found an NIH-sponsored clinical trial where 5 of the 65 candidates who applied were found have been misdiagnosed. Without the correct diagnosis, you are not likely to get the best possible treatment. And there is a second risk—if you start a treatment plan based on an inaccurate diagnosis, you could be a) wasting valuable time and money, b) harming your body and c) disqualifying yourself for future treatment options that might work for your specific cancer type. (YCS can provide you several recent examples where this was a problem for patients they have helped. Learning of these mistakes was one of the primary reasons YCS was created).
ALWAYS get at least two independent physician opinions. Some cancers are much trickier than others to accurately diagnose, and the risks from treating the wrong cancer can be huge. Get your second opinion quickly, since some aggressive cancers move very fast and you may be worse off if you wait too long. If the first two oncologists do not agree on your exact diagnosis and recommended treatment option(s) then get a third medical opinion. It is extremely important to start treatment only after you are sure of the diagnosis. (Contact YCS if you would like to hear more examples of real patients who suffered—and one who died—because they did not follow this advice).
Be aware that there is some risk in the fact that medical specialists are just that—specialists. Sometimes this fact can narrow their knowledge and perspective too far to serve your particular need well. For example, we know of one cancer patient who learned from all his reading and conversation with a small town internist that surgery is the “standard of care” for his type of cancer. So he and his wife arranged to meet with a surgeon at a large and famous cancer center and asked him to operate. The surgeon said this particular tumor was inoperable due to the exact location and the fact that this patient had diabetes. That's it—no other options were described. So the patient went home depressed and did nothing. The patient only learned that there were several clinical trials at other well-known cancer treatment centers AFTER YCS researched the web at the wife’s request. Moral of the story: do not assume that a specialist, such as a surgeon, will inform you of other ways to attack the cancer, such as with radiation, chemotherapy, gene therapy, angiogenesis or new drugs. The fact is that many specialists are too busy to keep up with the knowledge explosion that is now happening in new cancer treatments. They may not know of other treatments because they are too busy doing what they do best. Or they may (with some justification) be cynical of new cancer treatments because they have all seen too many so-called “miracle cures” which later turned out to be disappointing for one reason or another (nasty side-effects or effective only for a specific sub-set of cancers, for example). Just remember the old saying “To a person who has only a hammer, everything looks like a nail”.
If you even think you MAY have cancer, you should know that The American Cancer Society and the American Society of Clinical Pathologists both recommend getting a second opinion. There have been studies showing that errors are made in tissue biopsies which labs use to diagnose cancer. A second opinion could literally save your life, and is definitely worth the extra time and money you will spend.
(4) Understand The Pace Of Change.
Key questions to ask your oncologist are:
-How fast is this particular field changing?
-When is published research obsolete?
The pace of change for developing new cancer treatments is uneven and often happens in bursts of new knowledge. For example, a successful new treatment technique can make old treatments obsolete, sometimes in less than one year. For some types of cancer, information found in print and on the web that is two years old may still be reasonably accurate and helpful. For other cancers this information format can be obsolete, misleading and unnecessarily frightening. (The founder of YCS has personal experience with this scenario, and will give you all the details if you want them).
Understanding recent research definitely helps cancer patients feel they are “in the driver's seat”. In order to actively manage your treatment plan you must constantly check for the latest information research, which is often published on the web (as conference proceedings or papers) months before it will appear in print anywhere or be presented at the large, annual medical meetings.
(5) Assess The Prognosis For “Standard of Care”.
Get a good understanding of what the likely outcome is for using each available Standard of Care treatment. For each treatment option your doctor presents, ask “What percentage of patients with this diagnosis (and of the age and gender and general health that is similar to yours) do not survive this treatment?” Then keep asking questions until you clearly understand:
- exactly what the treatment involves
- the probability and exact meaning of “success” for this treatment
- the quantity and quality of life likely to result, and
- all costs, including time, money and travel commitment. If these treatments do not look promising to you, then we encourage you to move on to Item 5 below.
(6) It is Often Helpful to Know All Your Treatment Options Before You Take Any Treatment Action.
There are individual exceptions to this general rule. However, more cancer patients want to understand all their treatment options, standard and experimental trials, before starting any treatment. This is because getting certain cancer treatments may eliminate the possibility for you to use another option later on. Contact YCS for several recent examples of this scenario. It is also true that there are certain cancer patients who, for various reasons, find that they only have one reasonable treatment option within a reasonable future time period. Most patients feel more confident if they assure themselves of this before they begin costly and/or risky treatments.
(7) Keep Good Records.
Create a 3-ring binder and keep all medical tests, reports and notes of the questions you ask physicians and their answers. This is a great habit that is likely to pay off later on, sometimes in ways that will surprise you. This is particularly critical if you think you may someday want to be accepted in a study for a new treatment. Many people are rejected for clinical trials because of inaccurate or incomplete documentation of labs and other clinical findings. Quality of documentation counts. You need to understand what base line information (tests, etc.) need to be properly documented in order to be accepted into a clinical trial. These trials only accept a fixed number of patients and the best studies always require accurate and complete documentation for the patients they accept.
There are several new experiments started every week, so keep checking and be prepared with well-organized medical documentation so that you can react when an opportunity arises.
This is also a good practice for other reasons. One, as you begin to deal with any cancer diagnosis, there is so much new information coming at you that nearly everyone feels emotional and cognitive overload. Making yourself write notes on meeting and keep paper copies of all tests etc. in your binder will help you feel more organized and in control of the situation. Also, any other physicians, nurses etc. with whom you meet in the future will be pleased to have this data organized in a way that saves them time.
You may also receive conflicting information or opinions. You and your spouse are likely to have different understandings of what was said if treatment decisions are complex. Having everything written down and in one central place will aid you when it is time to making treatment decisions.
Web Site Updated 4/15/2008
Copyright © 2001-2008 Your Cancer Source. All Rights Reserved. Website Hosting & Design by K9 Bytes, Inc.