Lessons For the Newly Diagnosed Contributed By Cancer
Patients Who Have "Been There, Done That"
You Are Newly Diagnosed
You have cancer. You have been thrown into a small boat on a rushing river. Here are rowing lessons from veteran cancer patients who wish they had instruction instead of learning by experience. Read the list now and read it again regularly. Different lessons will speak to you at different times. God-speed on your journey.
If possible, decide early on to tell the world you have cancer. You can then be yourself. You don't have to remember who you told what and you don't have to worry about who talks to who. Some old "friends" will evaporate - you don't need them. Old true friends will stick like glue. New true friends who "get it" will appear. And you will find support comes from the unlikeliest places.
Talk to people who have been there, done that. There is no substitute for the perspective that comes from experience. There are many common elements in all our cancer journeys. Talk to as many cancer patients and caregivers as you can.
Look in your community for an organization providing services to cancer patients and their families. Make it a central part of your cancer journey. Go at the earliest opportunity to learn what they offer. Make use of their resources. Get involved in anything that appeals to you. You will find that everyone there "gets it".
Choosing Your Medical Team
Take the time to interview prospective doctors and hospitals. This is a very important decision. Reputation and chemistry are equally important. Talk to present and past patients. What was their experience? Look and listen. What does your gut say?
You want a physician who treats others just like you on a daily basis. Ask each physician, "How many patients with my condition have you treated in the last year? Over the last 5 years?" Compare answers. Bigger is truly better. You want somebody who knew all the basics a long time ago and today looks for and is intrigued by the nuances.
The more unusual your condition, the bigger the medical center in which to seek treatment. The bigger the population served by a medical center, the more people just like you are treated there every year. Always get at least one opinion from a medical center where your situation is commonplace.
For the initial diagnosis and all big treatment decisions, talk to several specialists. Look for a common theme. The doctors don't mind - it is done all the time and they expect it. Medical opinions are based on a great deal of education and experience. But they are still opinions and different doctors frequently come to different conclusions.
Because you will be in overload, you will not remember a lot of what the doctors tell you. At every visit have a companion taking detailed notes, a tape recorder or both. You will find them invaluable in making sense of things.
Think about yourself. Are you the kind of person who wants to know all about the things that affect you? Or do you get overwhelmed in detail and want things kept to the broad outlines? How about your caregivers? Talk to your doctors about your styles.
Take the internet with a grain of salt. It can be your friend and it can be your enemy. Mainline, creditable sources are a wonderful source of information.
Internet discussion boards are opinions, each based on one person's experience. Each opinion is a dot in the whole picture. Don't mistake the dots for the picture.
Consider the age of any treatment statistics you find. New advances quickly make them obsolete. Be careful about applying statistics to your own situation. You are an individual, not a statistic.
Making Treatment Decisions
At most places along cancer's road there is plenty of time to carefully consider which way to turn next and how fast to go. Don’t let yourself be rushed and don't rush yourself.
Don't make any major decision based on a single lab test, x-ray or physician's opinion. Laboratories make errors. Physicians’ opinions differ. Ask for confirming evidence (tests, x-rays, opinions, whatever is needed) before you make a big decision.
There is frequently no "best" decision. In buying a house there are trade-offs between bedrooms, bathrooms, location, decor and schools. In treating cancer there are trade-offs between present discomfort, the projected course of the untreated disease, and for every proposed treatment: duration of treatment, possible outcomes, expected outcome, immediate side effects, and long term side effects (eg cognitive difficulties, lymphedema, heart disease, peripheral neuropathy, secondary malignancies, etc.) Learn all you can about these many factors and then make a "good" decision.
You are the boss of your body and what is done to it. You hire some well educated and experienced consultants called doctors but the decisions are yours to make or delegate.
The only right way to do cancer's journey is your way. Then don't look back. You can only do the best you can with what you have at the time you have it. Don't expect more of yourself.
Take everything in and then do what feels right to you. Doctors, nurses, friends and family members may have their own agendas about your decisions. Listen to your heart.
Beware the double negative. Medical statistics can be presented in many different ways. What you are interested in is how much a proposed treatment will increase your chances of a good thing. What may be presented is how much a treatment reduces your chances of a bad thing. It is not the same thing at all. (Why wouldn't you pay $1000 for a device that reduces your chance of being hit by lightning by 93%?)
Number-needed-to-treat (NNT) is a concept oncologists sometimes use to evaluate a treatment. NNT is the number of patients who must undergo the treatment to benefit one patient. For example, if NNT is 15, then only 1 of every 15 patients treated will benefit but all 15 will run the risks of the side effects. Ask about NNT and consider if you like the odds.
Treatment side effects are often insufficiently explained in advance. Ask persistently, "And what else might I expect? And what else? And what else?"
Managing Your Physician Relationships
Do not expect a specialist to act like a Primary Care Physician who can knowledgeably point you to other specialists. Go back to your PCP, if you have one, or be your own advocate.
Do not be surprised if a physician-to-physician communication goes awry. If it is important, make friendly phone calls to verify that things were sent and that they arrived. When the chips are down, get it picked up and delivered by hand.
Get copies of every test result and file them chronologically in a notebook. You will almost certainly deal with multiple physicians. Different physicians order different tests for the same thing, order duplicate tests, may not share results or may lose track of them.
Similarly, set up a chart of every medication you take, its generic name, the dose you are on, the maximum possible dose, and a list of all possible side effects. Highlight all side effects you experience. Take this book to every appointment and ask the doctor to review it. Then everybody will have the same essential information.
Many tests and treatments may be available in your own community. If a physician orders a procedure that requires significant travel, ask if it can be done locally.
Many non-medical resources may be available to you - transportation, lodging, financial assistance, and support services of all kinds. Talk to a social worker or other staff at your treatment center, the Cancer Community Center, the American Cancer Society and other agencies.
If you are hospitalized, double check everything that you can. What is this? Who ordered it? Why, is it different from last time? Have a back-up person with you if you can. Hospital errors are all too common.
You will be confused. Take as a given that you will feel overwhelmed with new information, words, concepts, people, places, worries, statistics, decisions, feelings and discomforts. Don't panic, it will begin to make sense if you give it time.
Maintaining a positive attitude is always helpful but it is only truly possible when you give yourself permission to say "ouch" when it hurts.
Seriously consider attending a support group. If you are a talker/joiner, you will get a lot from participating. If you are a listener/lurker, you won't have to say anything and you will get a lot from listening.
You and your loved ones will be frustrated, angry, sad, depressed, anxious, afraid - sometimes all at once. Find appropriate places to let those feelings out. Keeping them in interferes with your healing and further unbalances family dynamics.
The cancer journey is a roller coaster ride. You and your loved ones are each in different cars. Somehow we expect everyone to be in the same car at the same time. They aren't - some are up while others are down and things change often. Try to understand when you seem to be on different planets.
You may have emotional reactions unlike any you have felt before. These are normal reactions to an abnormal situation. You are not going crazy, although it may feel like it. Reach out to other cancer patients, oncology social workers, cancer counselors, friends and family.
You may feel like you are trapped in a medical machine and have little or no control of your life. It's a common feeling but, as you get better, some sense of control will return.
Stress is not what happens to you but your reaction to it. When you are stressed, everything difficult becomes more so (nausea, pain, fear, anxiety, depression, etc.). Exercise, meditation, psychotherapy and massage are proven aids. Take up a meditation practice. Talk to a social worker. Find massage therapist specializing in oncology. Better, do all four. You and those around you will be very glad you did.
When you are done with treatment you may feel lost. You have been all consumed with treatment. You have been the center of the world around you. Your days have been busy, busy, busy. All of a sudden, nothing. Reentry to the real world can be a jolt. Expect it. You will adjust.
Try to see Cancer as a teacher - you will learn much about life, yourself and others on your journey. Some then treasure what they have learned above all else.
This list is a work in progress. Additions are welcome. Thank you for sharing.
Bruce Hopkins, LMT
Chronic Lymphocytic Leukemia, diagnosed 1997
Copyright © 2010-2012
Bruce A. Hopkins
May be adapted or copied with attribution.