Receiving a diagnosis of cancer is a major life change. Neither the patient, the family nor friends will be the same again.
Receiving a diagnosis of cancer is a major life change. Neither the patient, the family nor friends will be the same again. As with any other major life change there will be an emotional response similar to the grieving process associated with a loved ones death. The emotional response will proceed through several phases. These phases will be of varying duration and intensity. Most people will cope; some will not; all will be affected.
The Immediate Emotional Response
People react to being told that they have cancer with shock and disbelief. "I was stunned." "This can't be true." "This is happening to someone else." "How can this be happening to me?" "I can't have cancer. Nobody in my family has cancer." They react with denial by disassociating themselves from the situation. "I just went numb." "It was as though I wasn't even there." These are all normal self protective defense mechanisms that serve to reduce the turmoil to tolerable levels. For some people this immediate response will last minutes; for others hours or days. The patient's family and friends will go through the same response.
The Rational Phase
When the initial shock and panic subside the patient will start to make constructive efforts to deal with the problem. "Is the diagnosis for certain?" "What do we do next?" "How is this going to be treated?" "Can I be cured?" "Am I going to be disabled and if so for how long?"
During this phase a major amount of information is going to be exchanged between the doctor, the patient and the family. Initially, the communication will be mostly one way, from the doctor to the patient. The doctor has had this discussion many times before but the patient and her family are hearing it for the first time. The doctor will take clues from the patient and family as to how much to say at any one time. Everything will not be understood the first time. At first the doctor may not even have all of the information needed to make a plan. It may take several discussions before a recommendation is made. When a recommendation for treatment is made the doctor should be able to tell you:
He should be willing to answer questions to everybody's satisfaction. He is, however, unlikely to answer questions that were not asked. Initially, the patient and family may not know what to ask and may not have enough of an understanding of the problem to effectively participate in the discussion. This is the time to start learning about cancer in general and the diagnosis in particular.
The patient and family should understand that the doctor cannot predict the future for any one person. He can predict what will happen to a large number of people in similar circumstances. He can say that out of one hundred patients in your circumstance a certain number will be put in remission or cured, but, he cannot predict what will happen to you. Likewise, when a plan is made to go from A to B and then to C, that is what you expect to happen. However, the doctor knows that there are a lot of reasons that you may not get to B or if you do that you may not get to C. Plans can change and circumstances can change. The more information you have about your cancer the better prepared you are going to be to shift with these changes.
Some questions will have no answers. "Why me?" and "What caused the cancer?" are universal questions for which there are no good answers. There is a lot of speculation about the causes of cancer, but only a few instances that stand up to scientific scrutiny. Smoking increases the risk for lung cancer. Being an eighteenth century chimney sweep increased the risk for scrotal cancer. Too much smoked fish in the diet increased the risk for stomach cancer in Nordic countries. In some areas of China there is a high incidence of esophageal cancer from their diet of pickled fermented cabbage. Women who worked as painters of watch and clock faces with luminous paint developed mouth cancers. They were using a paint with a radioactive substance in it and licked their brushes to put a fine point on them.
Whatever the cause of your cancer it was not: bad thoughts, stress, moral deficiencies, character defects, too much fat in the diet, meat, second hand smoke, a fleeting exposure to asbestos, high voltage wires, air pollution, food additives, artificial sweeteners, etc. Whatever the cause of your cancer it will remain unknown.
"Why me?" is more of a religious question than a scientific one. For Christians and Jews the question goes all the way back to the Book of Job. For others, it was foreordained or just the hand that you were dealt. "Why me?" has no answer.
Information can be had from many sources. Oncology nurses, other patients and books will all be helpful. This has happened to many other people and they will all be eager to help. There are many books available describing your exact situation. Whatever the source, it will not be long before you have enough information to rationally discuss and make a plan with your doctor for what will be the next step.
Once everybody understands the situation and goals have been set and a plan agreed upon, the initial fear and anxiety will subside. Most people settle down. They have intellectualized the problem and are proceeding in a rational manner to try to solve it. But, just because you are now dealing with the situation in an intellectually rational manner does not mean that you can avoid your irrational emotions.
The Irrational Emotions
The emotions are still there and will always be there. The emotions will still cause you to wonder about "Why me"? "What did I do to deserve this".
Anger: "It's not fair.", "I've always done what I was supposed to do", "I don't deserve this."
Depression and a loss of self esteem: "There must be something wrong with me for this to have happened.", "Nothing in my life has been right, I've failed again."
Body image: "I feel ugly."
Sexuality: "How could anybody want me now?"
Emotions are irrational. That can be detrimental, but it is also supremely beneficial. All of our play and all of our pleasures result from irrational activity. Fun is irrational. Falling in love is irrational. Our irrational emotions are our most human quality. So do not try to avoid the irrational emotions associated with a major illness, just recognize them for what they are and work on the beneficial irrational emotions.
The rational phase and irrational phase will coexist. Once a plan is made and started the emotions will level out, but that is not the end of it. Now the roller coaster phase begins.
The Roller Coaster Phase
There are going to be a lot of tests. There will be routine blood tests and complex radiological studies; the results of which will all be awaited with dread and hope.
"Will the doctor find something wrong at the next examination?" "The test was OK this time, but what about next time.?
"The blood test was abnormal, we need to get an x-ray." "The x-ray was abnormal; we need to get a scan." "The scan was abnormal; we need to try to get a biopsy." "The biopsy was not normal, but not abnormal enough to be called a cancer. It was equivocal; we need to do an operation."
"The cancer seems to be in remission, but there is a little change in the scan, so we will repeat it in three months."
"The treatment seems to have been successful. We will reexamine you every three months for the next two years and every six months thereafter. If the cancer doesn't reappear within the next five years you are considered to have been cured."
"In the meantime, just because this cancer has been successfully dealt with, doesn't mean that you can not get some other cancer, a heart attack, stroke or be in an automobile accident."
It will never end; the fear of the test result or examination, elation when it is normal, the panic when it is abnormal, the frustration when it is not available, lost or uninterpretable. You are now living with your cancer or the consequences of the cancer that was. Whether you are destined to be cured or whether your cancer will be relentlessly progressive, you are living with your cancer.
How do you cope with all of this? You will need some help. One of most important sources of help will be knowledge. One of the most valuable sources of knowledge is found in books. One of the most helpful books is "I Can Cope" by Judi Johnson and Linda Klein. Most cancer centers have I Can Cope Programs or similar programs. You are not alone. Many have gone ahead of you and many are in the same place you are now and some are behind you that you may be able to help. Talk to other patients and their families. Talk to the oncology nurses. Talk to the medical social workers. Talk to your church. You should even talk to your lawyer or financial advisor. Libraries and book stores usually have a large selection of books about cancer. Many are written by patients or their family.
I Can Cope
Judi Johnson, R.N.,Ph.D. and Linda Klein
P.O. Box 739
Wayxata, Minn 55391
When Someone You Love Has Cancer
The Berkley Publishing Group
200 Madison Avenue
New York, N.Y. 10016
Wendy Schlessel Harpham
W.W. Norton & Company
500 Fifth Avenue
New York, N.Y. 10110
When Bad Things Happen To Good People
Harold S. Kushner
The Hearst Corporation
1350 Avenue of the Americas
New York, N.Y. 10019
William M. Rich, M.D.
Clinical Professor of Obstetrics and Gynecology
University of California, San Francisco
Director of Gynecologic Oncology
University Medical Center