The second style, hope plus denial, is an illusion. People who "hope for the best" may fall apart when faced with bad news.
Third, total denial, is when the person blocks out the problem entirely. Denial is a psychological sign showing the person is unwilling to confront reality.
Giving up, the fourth style, means neither hoping nor denying and has the worst prognosis.
Norman Cousins, in his book entitled "Human Options", states, "One's confidence or lack of it, in the prospects of recovery from serious illness affects the chemistry of the body. The belief system converts hope, robust expectations, and the will to live into plus factors in any contest of forces involving disease. The belief system is not just a state of mind. It is a prime physiological reality. It is the application of options to the maintenance of health and the fight against disease. It is the master switch that gets the most out of whatever is possible. The greatest force in the human body is the ntural drive of the body to heal itself but that force is not independent of the belief system, which can translate expectations into physiological change. Nothing is more wonderous about the fifteen billion neurons in the human brain than their ability to convert thoughts, hopes, ideas, and attitudes into chemical substances. Everything begins, therefore, with belief. What we believe is the most powerful option of all."
Norman Cousins indicates that he was cured from an extremely serious illness primarily by exposing himself to humor and laughing. Somehow, laughter can stir up positive hormones in the body. Expose yourself to humor and things that make you laugh whenever possible. Some hospitals have put laughing rooms in the oncology departments, so there must be something to this. Don't pass it up as one of the many ways to help yourself. Appreciate the philosophy of laughter!
The Johnson Comprehensive Cancer Center at UCLA is testing strolling musicians, from a large surgical floor all the way to pediatrics, where live music calmed crying babies hooked to machines. Children with leukemia, each in a reverse isolation room with only a small window to the hall, stood on step stools to see and hear the music. Three other visual arts programs are flourishing there, including art exhibits by fine artists who have experienced cancer. Their hope is that these concepts will be available in all cancer centers.
Keep yourself mentally and physically active during the term of your recuperation. Take courses, attend study groups, continue to work if possible, read books, participate in church or outreach groups or anything you would enjoy doing. Follow through and do these things even though sometimes you have to push yourself to do them.
It is important that you exercise regularly. Talk to your doctor about this. Whether this exercise is merely a simple isometric like tensing and relaxing different muscles of your body or walking or whatever you are able to do, the important things is to do something regularly.
On the other hand, be selfish. Don't overdo. Give in to yourself when you are tired or not feeling well. Recognize in advance that your recuperation will not always be a smooth easy road. It will have its ups and downs. Some days will be worse than others. Give in to yourself on those days. But remember that whenever you can, push yourself to do some kind of activity.
Don't mistake the side effects of the treatments for the symptoms of the disease. Many treatments can make you tired, weak or upset your stomach. This is absolutely normal and expected and could even indicate that the treatments are doing their job rather than the disease is getting worse.
A woman called and said she had just been diagnosed as having cancer and was afraid of dying. That is a very normal reaction and certinly nothing to be ashamed of. I think all of us probably felt exactly the same way, but most of us wouldn't admit it. To feel any other way would be abnormal. It is a good thing to get this out in the open, because once we can state a problem, we can often find a solution.
There are two aspects to face in that woman's statement in order to resolve it. First is that death and cancer are anything but synonymous. Most cancers can be successfully treated. The five year survival reported in 1982 was 46%, excluding skin and certain cervical cancers that are supposedly 100% curable. The figure for 1984 was 49% which is the relative survival for the period 1976-1981 because of the time delay in collecting the data. In my mind, there is no doubt that a person being diagnosed with a serious cancer has at least a 51% relative survival rate today. Furthermore, it is my personal opinion that if every patient had been treated promptly, properly and thoroughly by qualified physicians and had done everything else possible to help themselves, the 1984 figure would have been substantially higher.
Second is the aspect of being afraid to die, an absolutely normal and rational thought but one which deserves reconsideration at this stage of the game. The greatest damage will be done if we don't face it. The more an individual tries to avoid fear, the greater that fear will grow. Denying fear is costly in terms of personal energy. Suppressed fear will not dissipate but will continue to sap a person's energy. It is particularly harmful to a patient who needs all his resources to combat his disease. It will not help to try to suppress the fear. Get it out in the open so that it can be relieved.
Fear is an absolutely normal response to a life-threatening disease. The only danger to fear is when we deny it. Once fear is expressed and admitted, an excellent antidote can be knowledge.
After you have faced up to the fact that you have a life-threatening disease from which you might die, concentrate all your thoughts on living and fighting cancer.
We are all human beings. One hundred years from now we will all be dead. This was a fact when we were born, and we have always known it. The only question is "when." In my opinion, the quality of life is better for one who is fighting to live than one who is waiting to die. There is no possible way that searching for the state-of-the-art therapy and taking it could shorten your life one minute, and maybe it could lengthen it.
We cannot overcome our fear until we admit it. After we finally face up to our fear, there are ways to overcome it and learn to exist with it. Coming to terms with cancer means that denial must give way to free, healthy expressions of grief and fear. Moving from denial to realizing fear and anger can bring positive responses in many ways. The belief that our life has had meaning can lessen the fear of dying. The quality of our daily life affects our ability to handle fear. Being active and doing things you like gives less time to brood about your condition which, in itself, enhances your fear by allowing you to think about negative factors. Just the simple act of making a decision can give you a sense of moving forward and gaining purpose, of being in control.
From time to time, depression and negative thoughts will cross your mind. If they didn't, you would not be normal. Anger, impatience and selfishness are absolutely normal and could even be considered positive reactions. The one thing you must avoid is continued depression. The mere diagnosis of cancer causes depression. Many cancer treatments are depressing. Depression decreases the function of your immune system. Your immune system fights cancer. It is important that when you do find yourself depressed, you shake this feeling. Do this by talking about your depression to your family or friends. Change your thoughts from depressing subjects to positive, pleasant subjects. Channel the energy you would waste in depression into more positive thoughts. Concentrate all available energy into fighting your cancer.
There is an old saying, "Worry is like a rocking chair. It keeps you busy but gets you nowhere." Make up your mind that you have lots of things to do and lots of places to go. Whenever you feel yourself getting worried or depressed, try to change the direction of your thoughts and think about a forthcoming event. Plan things to do when you are with a particular relative or friend. Concentrate on your pleasant surroundings or try to recall some of the enjoyable situations you recently experienced or one of the many wonderful blessings with which you have been endowed. In other words, keep looking at the donut and not at the hole. Continuously plan new projects and goals that are realistic and attainable.
Common sense does not always give the best results, regardless of our intentions. We need to know how to help ourselves. If we allow ourselves to feel like a victim, we feel we have no control over our situation. We can't control everything in our lives, but we can learn to become an active participant and have a strong influence on what happens to us. Helplessness increases fear, anxiety and depression and can even cause a person to lose their will to live.
We are conditioned to believe that sick people are victims. With a long-term chronic illness, it is important to correct this attitude. Victims are often resentful toward their doctor, their family and everything else. While it is certainly understandable that anyone with cancer will feel like a victim at times, we must get back in control of ourselves so that we will not feel helpless, hopeless, and depressed.
Not only the disease but the side effects of the treatments can cause fatigue and emotional stress that can lead to depression. Long-term depression can be harmful to the cancer patient because it builds. We may not even be aware of it because we are taught it is not right, we are frightened of being depressed or we are worried about what others might think. When we deny it to the point that we are not aware of it, it is most critical because it will continue to sap our emotional and physical strength until resolved.
Acknowledging the existence of depression will not make it get worse. Admitting that we are depressed can give us the strength to overcome it. That in itself can give us hope and a better quality of life.
The day after I was diagnosed and told to get my estate in order, I was at my desk prior to going to Houston. I wrote a long letter to my family basically describing my feelings and emotions. While I didn't want to die and while I felt I was just beginning to reap the rewards for which I had worked 52 years, I had no regrets. I believe writing this letter helped me lessen my fear of dying. I gave it to one of my daughters to hold and open only in the event of my death. After I recovered from surgery some months later and felt confident that I was on the road to recovery, I got the letter back from her and put it with my will. Maybe something like this could help you. Often, when you talk something out or write about something that bothers you, it will stop troubling you.
An M.D. Anderson trained pediatric oncologist stated that he always discusses death and dying with each patient and their family because it is always a possibility in some types of cancer. He wanted to bring it out to avoid the patient's often unspoken fear of it. However, he treated each patient, regardless of their prognosis, as if they were going to live.
After he discusses the possibility of dying, his theory is to put all energy and thought into working toward living. When asked about certain professionals' belief that a person must prepare himself to die, his answer was, "That is nonsense." He has seen patients, who recovered after they were supposedly given no chance of recovery, have a difficult time adjusting to living. He has never seen a patient have a problem adjusting to death. It may have been a blunt way of putting it, but think about that statement for a minute. It is an undebatable truism.
He said that "terminal" is a disease that you catch in a bus station and that is not what he is treating. Furthermore, he is not treating people who are dying. He is treating patients who are trying to live. Another outstanding cancer researcher, Dr. Jimmie Holland, states, "People ... are fighters and they want to fight to the end. They don't want to get the feeling that they have been given up. They want to be a part of the cutting edge of the fight against cancer."
Cancer is a serious disease, or really an assortment of over 100 different diseases. There are often many options in treatments. Such rapid progress is being made that no single physician is capable of knowing the very latest and best treatments for every type of cancer. Dr. Vincent T. DeVita, Jr., director of the National Cancer Institute states that anyone with a life-threatening disease should seek a qualified second opinion. He says, "The worst thing a physician can do is to declare a patient 'incurable.' In that context, where the patient has confidence in his doctor, the doctor will always be needlessly correct."
Furthermore, he says, "I've been taking care of cancer patients for a long time. I have never taken care of a doctor who didn't get a second opinion. I've never taken care of a doctor who didn't have his microscopic slides read twice, by more than one pathologist, to make sure that he had cancer, knowing already that he had gotten into a pretty good system. And I think there is a message in that.
"One caution when seeking a second opinion is to be certain you truly receive an independent second opinion and not a second first opinion. Do not allow your doctor to refer you to his professor who taught him the way to do it, to his golfing buddy or to his co-worker in the same office. Be certain to look for a qualified, competent physician, separately trained and working in a different institution. Only in this way can you avoid getting a second first opinion."
In the November, 1987 annual review meeting of the National Cancer Institute, he stated that only 40% of the women in Los Angeles with heart cancer who should be getting adjuvant chemotherapy are receiving it. Sixty percent are not. Sixty percent of the women who have been described in every conservative study as needing treatment are not receiving it. And that is in a geographic area where supposedly superior attention is provided. When asking Dr. Bernard Fisher about this, he said that if you were to include people getting improper treatments, he would assume the figure nationally is much higher than 60%. This dramatically demonstrates the need for a qualified, independent second opinion.
As to whether you should go to a major cancer center for treatment, Dr. DeVita states, "Experience is what really counts in this whole business...If you had cancer, wouldn't you rather go to someone who had a lot of experience managing that cancer?" If your local doctor has had the experience of successfully treating your type of cancer, and a qualified, independent second opinion agrees with his recommended action, there should be no reason to go away from your community.
Dr. DeVita says patients have "got to be able to go to their doctors and ask a very simple question: 'Doctor, do you take care of this kind of cancer often?' If he says, 'Well, I treat two or three patients a year,' I think you should say, 'Could you find me somebody with experience?' Then telephone Cancer Information Service, and we can help you find the people with experience...That's the real crux of the situation...The answer for anybody who has cancer is to go find the people who have experience. That is not always in a big cancer center. For example, our cancer center in Bethesda is one of the finest in the world. We study certain kinds of cancers, but there are certain kinds of cancers that we don't study at all. So for the ones that we don't study at all, we're not a good place to go.
"We're large, but if you had some kinds of cancer, we'd be small in terms of experience. Almost every center in the country that I know of is that way, with only a couple of exceptions...But most of the cancer centers have a personality because of the researchers they have attracted. They see a lot of one kind of cancer and not much of another kind; they study certain kinds. It's very hard for the public to identify the centers that have great expertise in one area and not in another.
"Patients are so shy about going to their doctors and saying, 'You know, doctor, you just told me I have cancer, and you said my changes are 5/50.' They are facing a 50% chance of losing their lives and they're shy about saying, 'I want to go to somebody who has experience.' And the doctor says, 'I don't have any experience but...' They seem to be shy about saying, 'Well, I'd rather go to somebody with experience.' Doctors intimidate people...Experience is what counts."
It is my personal opinion that most doctors do not intimidate patients. They are usually caring and compassionate. They put the patient's interest first and will voluntarily suggest a second opinion. However, you are not interested in most doctors. The only thing that matters to you is your doctor! If he is not caring and compassionate, if you do not relate well or feel comfortable with him or if he in any way discourages a second opinion, I would strongly suggest finding another doctor who meets these requirements.
A boy in North Carolina had Burkitt's lymphoma. The father telephoned Dr. Burkitt in London. He advised them there were two centers in America where there are leading experts in treating this: the National Cancer Institute in Washington and M.D. Anderson in Houston. "You couldn't go anywhere better in the world than these two places. I am not the right person to treat the boy. I would be 20 years behind these experts in treatment knowledge."
The National Cancer Institute, with the cooperation of 150 cancer centers in the United States and 22 foreign countries, has spent tremendous resources to place every known treatment for each kind of cancer on a computer. Furthermore, this is updated for each kind of cancer every month after being reviewed by 72 physicians and scientists. This information, called PDQ, is available to your doctor through his personal computer, his hospital computer or his medical library today. It is written in common, understandable English. It not only shows the state-of-the-art therapy for each kind of cancer along with statistics, but all other options including where successful experimental therapy is being done and who to talk to. It is also available to any physician, any patient or anyone else absolutely free by calling 1-800-4-CANCER and specifically requesting PDQ for the specific type and stage of cancer including all current open protocols.
In a government publication dated September 15, 1984 entitled "National Cancer Program", it states, "If physicians avail themselves of the opportunity now offered by PDQ, the NCI estimates that national survival rates would rise by at least 10 percent, or more than 400,000 lives saved per year."
One morning a cancer patient, her husband and daughter came into my office. She was worried because she was to get no treatment other than radiation therapy. I was confident her fears were psychological. Her primary doctor was a superb medical oncologist. I had heard her type of cancer discussed numerous times at the Cancer Management Center, and radiation was the only treatment recommended.
Realizing that most people feel better when they read the recommendation themselves from an authoritative source, I turned to my trusty computer immediately behind my desk. In two minutes, I had a print-out of the current PDQ state-of-the-art treatment for her type of cancer. I read with her that the recommendation for her stage of cancer was solely radiation with excellent expected results. The only exception was when the initial spread was to a specific area of the body, which hers was, when the chance of a fatal recurrence without chemotherapy was nearly universal. We agreed that for the benefit of the doctor's pride, she would forget she was at my office. She would call her doctor and insist he get PDQ so he could "discover" this information on his own. One life was probably saved because a woman refused to wait and look back and say, "I wish I would have..."
Every cancer patient who is interested in recovering, and we must assume that since you are reading this book, you are interested in recovering, should insist that their doctor get a printout of the current PDQ as it pertains to their disease, and the patient should read it. Understand all your options. Know what your time frames are. Look into your future. Educate yourself in every possible way. Knowledge is power. It can help you help yourself fight cancer. Uncertainty and doubt stimulate stress which in turn depresses your immune system. Get PDQ, digest the information and know you are proceeding in the right direction and doing everything possible to help yourself.
Progress in the treatment of cancer is moving so rapidly that the state-of-the-art statements in PDQ were modified on an average of 15 per month during the 18 months it was on line prior to October, 1985.
The draft of the May, 1985, publication of the National Institutes of Health entitled "Cancer Control Objectives for the Nation 1985-2000," states, "The application of the state-of-the-art treatment is complex. At all levels of the health service delivery system from the primary care physician who has initial contact with the patient to specialists directing the cancer treatment physician knowledge is not yet optimal. That knowledge should include an appreciation for state-of-the-art treatment information and an interest in ensuring early multidisciplinary decision making...For about 70% of cancers, optimal therapy derives from multidisciplinary discussions. The relative rarity of some of the most responsive tumors means that proficient treatment can be maintained only at some major cancer centers... Malpractice considerations may result in physicians selecting 'safe' therapy, which neither offers significant risk nor the chance of cure...A major determinant of outcome for most newly diagnosed cancer patients with curable disease hinges on early multidisciplinary treatment planning and the availability of expertise and resources to carry out such a treatment plan." This is repeated again in Monograph No. 2 published in 1986 by the National Cancer Institute.
Most cancers can be successfully treated if they are treated promptly, properly and thoroughly. As has been pointed out, you generally have only one chance to cure cancer. If it is not done right the first time, often there is no second chance. For this reason, I recommend a second opinion in every case of cancer, whatever the prognosis. If it is good, you want to be certain it is correct and if it is not, then you want other cancer doctors' opinions so you will know what can be done.
This section will describe what an individual living in Missouri or Kansas can expect when they bring their case to the R.A. Bloch Cancer Management Center at the University of Missouri-Kansas City. This is an organization run by a board of directors consisting of one representative from each of the hospitals in the metropolitan area. It meets at the university because that is a neutral place with no medical facilities whatsoever. No physician need be afraid he will lose his patient there. It is free, all participating doctors donate their time for the sole purpose of seeing that each patient has the best chance of beating their cancer as easily as possible. They believe that a well-informed patient is better. Along with a free second opinion, they are there to answer any questions.
The patient must get all their records including pathology slides, X-rays, scans and a write-up of their case by any physicians who have treated them stating what has been done and what is proposed. These are delivered to each participating physician at least two days before the panel is to meet to allow each doctor time to study and review the case and get any information desired.
The appointed time of the panel comes. The patient, along with their spouse and any family or friends who care to come with them, sit on one side of a conference table across from the doctors. There is generally a pathologist, a diagnostic radiologist, a medical oncologist, a radiation oncologist, a surgeon and a psychologist or oncology nurse along with any other specialists necessary for the particular type of cancer being reviewed such as a gynecologist, urologist, neurosurgeon or pulmonologist. These doctors have all reviewed the case prior to the panel and then discussed it amongst themselves before the patient comes in.
The medical oncologist generally leads the discussion, first calling on the pathologist to explain what he sees in the slides. Pathology is as important to the successful construction of a proper treatment as a solid foundation is to a large building. Without his accurate diagnosis, the others are left helpless.
One woman, four months pregnant, was told from a Pap smear that she had cervical cancer. Her doctor recommended an abortion and hysterectomy immediately. The pathologist discovered it was cervical cancer "in situ" which would not turn into cancer before 3 to 30 years from then. She was advised to have the baby without concern, after which the treatment for an absolute cure was simple.
A man had a malignant polyp removed from his colon. He was told they got it all out, that it was an indolent type of cancer, and he should do nothing but be watched. Our pathologist found that it was a highly invasive type of cell and had probably not entirely been removed because it went to the edges of the tissue which was taken. The panel recommended prompt surgery to remove a few inches of his colon which meant cure if it had not penetrated through the wall and additional treatments if it had.
A woman was sent back from a major cancer center with an active tumor of unknown origin and told to make herself as comfortable as possible. Nothing could be done. Our pathologist stated that this cell generally came from one of two sources, the lung or the thyroid. They had wonderful X-rays and scans of the lung which were absolutely clear. He asked if she ever had cancer of the thyroid. She replied, "Of course not. But I did have a growth removed from my thyroid two years ago that was benign." They went back and got the tissues from that surgery which were found malignant and were able to recommend successful treatments.
A 74-year old gentleman was told he had cancer of the pancreas with no hope. The panel pathologist found it was not malignant! To be certain, he, on his own, got opinions from three other pathologists who agreed. Not to leave any stone unturned, they sent the slides to the Armed Forces Institute of Pathology in Washington.
Most people never even get to meet their pathologist. In many cases, he can be the most critical doctor because if his conclusion is inaccurate, all the other doctors involved will be working on the wrong premise. At the panel, he explains to the patient exactly what their cells are like, how fast they grow, how they generally spread and any other unique facts about their particular tumor. Sometimes he draws them pictures of their cells or tumor, shows them the slides or suggests they look at them under the microscope.
Next, the medical oncologist calls on the diagnostic radiologist who has put the pertinent X-rays and scans on the view box on the wall. He explains to the patient and family each detail of these images, such as where the tumor is or was, how it has grown or shrunk, what the treatments have done, etc. Often, the patient has never seen these or certainly has never had them explained. It is amazing how seeing a negative bone scan will make a patient feel so much better. A patient with brain cancer was advised to go for a surgical cure because the brain scan showed the tumor was totally surrounded by dead tissue and could be safely excised before it changed from stage 1 to stage 2 or 3.
Then, the medical oncologist might call on the surgeon to advise the patient on their past surgery and what part surgery could play in their future treatments. Occasionally the surgeon comes up with a suggestion for cure, an improved method of administering another treatment, a better way to measure or stage the disease or the first step in a series of treatments to control the disease. As one surgeon put it, the doctor providing a second opinion some months after surgery and recovery generally has a lot more facts and knowledge to work from than did the surgeon at the time of and under the pressure of surgery.
Next, the radiation oncologist will explain how radiation had been used in the treatments and what its future potential is both in curative and palliative (pain and discomfort reducing) treatments. He explains what could be done and what the risks and the options are. This is particularly interesting in breast cancer when you hear disfiguring surgery compared with a lumpectomy and radiation therapy or when a knowledgeable doctor recommends hyperthermia to augment another treatment.
Finally, the medical oncologist explains what part drugs have played or can play in the specific case. Here is where they get into many options and explain the pros and cons of each. The time frame, the schedule, the potential side effects, the measures of success, the order in which options are tried and all other factors are generally neatly tied up. If there is a consensus, fine. And there generally is. If there is no single conclusion, the patient is aware of all their options. That is the way it should be, and the patient must have the final right to decide which way to go with the aid of their own doctor.
The patient and their family are free to ask any questions they have. These wonderful doctors answer them meticulously. If there is any indication that the patient has failed to understand anything, the doctors will continue to explain it. After the panel, the medical oncologist will, on behalf of the panel, write a letter to the patient's doctor with a copy to the patient explaining everything that was discussed. The patient and their group adjourn to another room with the psychologist or oncology nurse to discuss the psychological aspects of the case as it applies not only to the patient but their family. Also, they will suggest other things in addition to medicine that a patient may do to help themselves.
Nearly every patient I have seen leave the R.A. Bloch Cancer Management Center has been extremely happy. Generally, the least they can find out is that what their doctor has told them is correct. That can do nothing but lead to security and peace of mind. From there, it only gets better: from additional options to a discussion of cure in cases that came in as hopeless. Everyone can't beat cancer, but if they try they have a chance.
The reason I discuss the Center at such length is not for you to come here. If you don't live in Missouri or Kansas, you're not even eligible. However, if you really want to get a multidisciplinary second opinion badly enough, you probably can do it right at the major hospital near you. Each major hospital has what they call a tumor board that generally meets each week to discuss cases of cancer. You can ask your doctor to present your case to the tumor board while you are present.
This presents two problems. First of all, he will say that a patient is never brought before a tumor board. Point out that if he checks, he will find out that there is no rule against it, and you feel that if you are present, the doctors will discuss the case in greater depth, and you will get a lot out of it. Secondly, he might say they only like to discuss "interesting" cases. I suggest you point out that this is your life and you find it very interesting. You trust that his sense of values will find it interesting also. If you don't succeed, try again elsewhere. Others have succeeded; maybe you can too.
If you are unable to get a multidisciplinary second opinion locally, listed on page 221 are organizations that have declared they would make available such a second opinion, if specifically requested. Have your physician contact the individual listed at the most convenient institution to arrange this for you and to get your necessary records together.
An HMO (a private organization that pays for the medical treatments of its members) has signed a contract with Fox Chase Cancer Center to provide a multidisciplinary cancer consultative service prior to any treatment, with the expectation that it would actually save them money. Has it worked? When I visited Fox Chase on May 15, 1985, they had seen four patients. I was told that the recommended treatment by the panel was different in each of the four cases from that proposed by the diagnosing primary physician.
The following day, they were to review a young woman, 25, who was scheduled to undergo surgery the next day for a recurrent neck cancer in a lymph node. The surgeon's proposal would necessarily disfigure the woman by making massive removals on both sides of her neck The Center team, I learned, studied the case and agreed that surgery could not benefit this patient with a recurrent metastatic disease and other options were more viable.
These savings in costs and treatments do not measure the most significant benefits: the quality of life and peace of mind you derive from having appeared in front of the panel, and confidence that you will get the proper treatment the first time.
Code of Practice at the R.A. Bloch Cancer Management Center To Achieve Excellence Attempt Perfection Less is Unacceptable