PART 1 BUT FIRST AN OVERVIEW SO YOU KNOW WHAT IS COMING AND CAN TUNE IN EVERY TUESDAY AT NOON PST TO WHEN TUMOR IS THE RUMOR AND CANCER IS THE ANSWER OR GET IT OFF AMAZON IN ALL FORMATS AND READ ABOUT IT AT YOUR OWN PACE
How you say it
Assessing Patient Goals
Lies, Damn Lies and Statistics
Listening For Those Whispering In The Patent’s Ear
Assess Patient’s Goals
PART TWO OF THE DIAGNOSIS
Sex and Significant Others
Role Of Family
Teach Your Children Well
Focus on Symptomatic Relief
Introduction to Clinical Trials
Complementary And Alternative Medicines Overview
Antidotes For Anecdotes
Prognosis And The Future
Taking Your Time, Avoid Timelines
Autonomy; Everything Begins And Ends There
A Final Few Words
How you say it
Assessing Patient Goals
Lies, Damn Lies and Statistics
Listening For Those Whispering In The Patent’s Ear
Assess Patient’s Goals
The Opening Pitch
The actual or impending moment of rendering the diagnosis is a critical and unforgettable time for every patient. Physicians would be wise to know the personal space the patient needs and adhere to it. It is also wise to tune in to whom the patient wants to have there when the moment comes. The cancer team should be quick to evaluate the level of support available and offered by family, friends, church, social groups and employer. Patients must be oriented to reality to avoid “calamatizing” as soon as possible. Yes, this may or may not have been the worst that has happened to an individual, but it will not go away on its own and retreat is usually not a reasonable option. Your physician will be wise to use sympathetic listening coupled with a thorough emotional inventory to screen for any coexistent psychological disease such as depression or anxiety disorders as these will invariably not only need to be treated but will telescope under the duress of the cancer diagnosis. The more your doctor knows the more they can help.
Patients will often recall who were there, who said what and body positions, tone of voice and the like. Doctors must always place prime emphasis on patient autonomy. A doctor can lead a patient to intelligence but cannot make them think. It follows that the right of a patient to swing their proverbial fist ends just before the doctors’ nose. Those are key parts of the contract.
It should be stressed to patients that they can handle the journey as thousands before them have. Patients should hear their doctors telling them that intense feelings are the norm. Once again, anxiety is fear of the unknown and of what has not yet happened, only what may. It will paralyze. Fear of the known is that which most patients can handle remarkably well.
The key is to turn anxiety into fear through information, facts, and knowledge and kindness. Both can be destructive and are not in contest with each other as to which is worse. Fear will force responses or reaction to be sure and do so quickly in oncology as events will move rapidly. Anxiety, such as fear of recurrence, requires some acceptance as well as distraction and engagement in other activities until the anxiousness passes (such as major anniversaries being cancer free for example). Nonetheless, both are bears that can be battled appropriately. Time and events eventually eclipse anxiety wherein you have a choice of replacing them with healthier thoughts or not. Fear is present and real and one way or the other it will have its moment or engagement as it is fear of something real, not what may be.
How You Say It
Style of communication is critical. It is easy to fall into paternalism. This is where similar to the dad in “Leave It to Beaver”; the oncologist parses out packets of information regarding the diagnosis. That should stay in 1960’s TV land. Rather, the issue is for oncologists to individualize each “big talk”, as I call it, with each family. This is a sacred time and a private time.
There are practical concerns as well. The patient, and whomever they choose to be there with, must be able to hear and remain uninterrupted. Personal space and cultural and socioeconomic differences can be quite relevant. Delay and procrastination is an irreparable mistake. Once the diagnosis is certain or the urgency of the situation warrants, the talk occurs. Doctors must maintain and patients should demand personal eye contact. The greater the doctors’ candor, the more trust will be engendered. Attitude of the informing physician is immediately transparent to patients in fear and the doctors’ perceived attitude is enormously influential in how patients begin the journey. Our mothers were right; you get only one chance to make a first impression. The rest is gravy or damage repair. It is important that further staging procedures or consultations are seen as a positive approach to the disease rather than simply more physical or emotional experiences to be feared.
Lies, Damn Lies, And Statistics
Statistics are tools to describe populations of similar patients behavior based upon looking at how they did, not how you are doing, for the purpose of trying to predict and inform how you will do .You are a not a number, you are an individual. Understand that statistics try to inform you how patients sufficiently similar to you have fared.
Remember though, the answer that comes out of applying statistics will tell you with what degree of certainty groups of patients like each other in all relevant ways will likely perform with a certain level of certainty and not by chance. Although this is intended to be a guide for the individual , the statistics is still saying the odds of what or how an individual will do as a member of a group with a given stage and or treatment regime, they are not a magical prescription that cannot be avoided. People do beat the odds so to speak . It is the odds of beating them that we can calculate compared to the larger group if you are to be an exception.
Statistics is an elegant science where: (1) One can know the predictive powers of tests which is the ability of a tests’ yes to be yes and no to be no with great certainty (2) Whether you can compare two patients or two groups of patients with confidence that they are highly similar in all relevant ways and thus any difference in outcome is due largely to them being treated differently, (3) Whether you know an outcome was more by chance or (4) truly a prediction of what will happen almost always while stating what almost always means. For example the odds of heads or tails is pretty much 50% with a penny but the odds of any particular dice number always coming up are no better than one in six (5) Statistics can tell you the number of patients needed to treat in a trial of a hypothesis to be able to even have a chance of knowing whether you can discern a true difference for one treatment to another. (6) They can tell you if trials of different treatments have the power to give you an answer before you run them and not just after they are done. Some studies have so few patients ( like too few flips of that penny) to have the power to ever give an answer with statistical certainty of any worth to state that one treatment ( heads or tails) is more likely an outcome that the other (7) Statistics can tell you what factors are the most important individually or as a group in determining possible outcomes. For instance is it how high the penny is flipped, who flipped it, the temperature, any wind or the fact that the head weighs a tiny bit more that the tail side. (8) They can tell you crucially how powerful conclusions can or cannot be drawn when one groups multiple trials done at different times by different people on very similar patients. One may see very consistent messages and lessons, one may see conflict without clear reason. (9) Statistics can tell you how strong on a scale the evidence is for us to support one or more conclusions meaning a range from not only did the result not occur by chance but the odds are extremely high that you will get the same result nearly every time to no more that the proverbial coin toss and mere chance. (10) They can tell you if there is no realistic way to know certain answers because of the nature of the factors that determine the outcome, such as when there is just not enough data at hand to make comparison or enough patients who have highly similar ways of describing them and their disease. (11) Statistics help sort out opinion versus heavily held opinion and can be, when understood, more powerful than a surgeon’s scalpel in cutting out truthful pieces of reality than presumed or hoped for ones.
Physicians often use the acronym GIGO (garbage in garbage out). This is an important rule meaning the folly in trying to reach or give a conclusion if you have poor study design or a poorly constructed method to ask for odds of a patient taking one particular treatment ( or odds from not taking treatment ). Not only can good statistics point out that you have muddied the water in trying to come up with an answer, they can bring clarity as to how.
Think of it like this. Let us ask what is the best route to school ( the best therapy or treatment plan for you). To answer you need to be sure you know and keep constant everything that can affect the answer, such as time of day, weather, what vehicle, driver, air pressure in the tires, traffic, day of week and more before you run the test many times. If you have poor control of all the variables and put “garbage” into the study you will get garbage for answers. If however multiple studies have consistently shown a direction or choices for you to take and what the outcome for groups of similar patients have been, your physician can tell you that and do so with some degree of certainty or define the lack of certainty.
Finally, statistics can tell you if there are biases in the treatment studies that can inappropriately influence the results. For e.g., when asking a new question of one treatment versus another in highly similar patients, it is important that we know pre treatment that either treatment may work with the same degree of chance.
The bottom line is that physicians will be offering treatments to patients based on either many or few experiences of similar patients and because of the elegant and competent statistical analysis done on them they offer treatments that are indeed at least the standard of care. Statistics, properly used and understood can highly inform intelligent choices taken not by mere chance.
Listening for Those Whispering in the Patient’s Ear
Physicians must first listen to what their patients think they know. What do the patients know, fear, suspect, have heard or God forbid, overheard, as is all too common. What do they have in their head about cancer and what does the diagnosis mean to them? Only then, can physicians understand where the patient is starting both emotionally and intellectually. This also clears the air and affords the doctor an excellent opportunity to customize the game plan of imparting information to the individual. We experience cancer individually. One size does not fit all.
It is imperative to realize that none of us arrives at the diagnosis of “cancer” without morbid, pre-conceived ideas. Then there is the insufferable onslaught of the media, the assemblage of well-intentioned relatives and thoughtless, groundless declarations from well-meaning, often-misguided friends.
Frequently in life, whenever it hits the proverbial fan, newly minted experts fly off the fan blades. These are folks, good intentions aside, who act as if they have graduate training in advanced cancer care and are all too eager to deluge you with their newfound genius. Articles, media and all manner of experts who seem to explode out of the woodwork may soon be assailing the newly diagnosed patient and family. Family and friends may seem to ooze from every nook and cranny with some anecdote of a friend with “cancer” (frequently not even the same disease) and will recommend some wild remedies.
The best approach is to deal with these head on and use the Physicians’ Desk Reference (PDR) and web sites discussed later as a guide about various potions and pills and always tell everything to your physician. If you feel you cannot, tell them and share it with the family member who you know would “take over” if you could not speak for yourself. If that trust is still not there, get another physician and explain why tactfully.
The cancer team should take a polite stand and not denigrate or humiliate when perhaps well meaning others light upon vulnerable prey. There is usually no shortage of well-meant and outrageous advice and stories seeking to compare your unique situation to all others. This is dangerous stuff and the best advice is to focus on mastering facts first. Get data, turn it into information and knowledge and then, with the help of your cancer care team, go to reputable outside sources – gain wisdom.
The next bane or boon can be the media. Despite the harm they do with half stories and hype, let us remember that enormous harm to society caused by censorship and restraint is far more insidious, permanent and broad sweeping.
The vast majority of accurate and personally relevant knowledge of a medical illness for most people comes strictly from a physician. Thus, it is up to physicians to have their facts straight as well as very up to date. Physicians need to be aware of what patients can find on the web, from rumors mills, blogs and irresponsible inside scoop publications and other less reputable sources. Physicians should become familiar with some of the superb web sites for cancer patients that do exist starting with the one your taxes pays for at the National Cancer Institute www.cancer.gov/. A well-informed patient is indeed a frequently much healthier patient. Certainly, family group involvement in reading, perhaps starting with this book, should be encouraged.
A medical journalist’s job is not to be a doctor but rather write the news as best as is provided to them. We have a saying in the military that one of the most dangerous weapons is a brand spanking new second lieutenant with a pencil. The point is that the journalists may journal or write well, but they are not a clinician and even while many understand that, the holes in their coverage reinforce the risks of simple reading and believing. They also write for the masses. You are not the masses and the you that is not in their article is the one with your disease and all its unique characteristics.
Patients are usually not critical readers and should practice checking out the latest breakthrough against what their physician tells them. The sheer ignorance and frank misuse of medical vocabulary and grammar that leads to wildly erroneous conclusions is amazing. Using one instance that seems related to you to more deeply understand your situation and prognosis has profound limits. All the time spent guiding patients to reputable sources to develop a bond of honest and patient communication is always worth it.
There is also an enormous temptation of non-reputable sources that make outrageous unsubstantiated claims to generalize. It is often difficult for a patient to grasp that they are an individual and that the articles they read are not necessarily specifically about them. Furthermore, patients should beware the frequent whiff of sensationalism about a new technology that may have little or no bearing on their situation.
Also beware the media junkie who might as well be sitting on the medical or research campus stoops or hanging about biotech cafeterias. These are folks addicted to “breakthrough” technology and they sing its praises every time the slightest whiff of something new is in the air. Remember, there is distance and time from bench (laboratory) to your bedside and thank God for it. It is there for patient safety. News is often mistaken for information and the starter gun to begin therapy, which it usually is not. Even when it opens new and wonderful avenues of investigation and perhaps trials of treatments, let the system do what is does and is profoundly motivated to do; prove if it is safe and effective and how it compares in all manners to other patients with the disease. The devil is always in the details as whether every new glove is a handy right fit for you.
There are breakthroughs. Some do apply to large groups and they are glorious. However, nothing comes easy. Nonetheless, with uncommon exception, when patients gain access just in time to some new highly promising treatment we must remember the rules about nothing being a payment free cure. It may be only (and I use that word with caution) a psychological or financial wild mouse ride since it is new, with no knowledge of just how durable responses or remissions may be. Our bodies usually do not easily fly into a fairyland where all are cured and none fall sick to “other” effects of the new breakthrough. Although exceptions are uncommon they have happened such as the superbly well tolerated and revolutionary Gleevec in Chronic Myelogenous Leukemia.
Finally, patients should never be embarrassed if they do not know of the latest heralded wonder treatment that hits the streets. Physicians should be honest, lending their critical mind but not necessarily vote of credibility when new miraculous cures are brought into the discussion.
They are unavoidable, have variable life spans and are frequently dangerous. Get the facts, read this book and numerous other sources and give yourself a break from preconceived ideas. Do not try to build bulwarks around preconceived ideas to authenticate them as powerful when in fact they are biases and opinion that are not necessarily true. Do not buy batteries for the Boogie Man. Rather, introduce these ogres of your imagination to your team without prejudice or embarrassment and let your team help you with sorting fact from fiction. Even if all is true, turning on the lights and swinging at those bats in the belfry of your unfound biases, especially when not alone and in the light of the physician’s office is often wise.
Never preconceive how weak your will is for the journey. Of course, you are afraid but trust me, you are amazing. Cowardice or sheer inability to handle the diagnosis and treatment is rare. People are remarkably brave. Your oncologist and their team as well as survivors and in-treatment supporters whom you will be immediately pointed towards as well as in-treatment professionally moderated groups can all help. There are many resources and the best is guaranteed to be the shortest distance away, yourself.
Use When Tumor Is the Rumor… to fuel your hopes that you too can excel in the journey no matter where the fight may lead. You will be deeply touched and will touch in return. Become informed and fully engaged, a never ending process in the journey.
In life we are rarely assaulted by true emergencies, the sort of thing for which instant action is the only thing possible. Think about it, they are not that common. I am an Oncologist and a retired Colonel telling you it is so. Your team is where you place your confidence and pledge your allegiance to reflection and response, not just react. I assure you your cancer hates the measured coordinated comprehensive response, never having enough time to regroup. Your health team will flourish with it.
Information and a competent team who view teaching you as one of the many first steps to action is what you need. If you do not see that, speak up. If they do not hear you, go elsewhere quickly. When selecting therapy with your team place high value in high-level trials supported by the National Institutes of Health and major cancer centers in large major cooperative groups. This is how we know so much today and such therapies are often available with non academic physicians as well. Chances are high that treatments as part of a national protocol known to be a good standard are being compared to others also known to be a standard. Ask about that after reading the clinical trials section.
Assess Patient Goals