If you're looking for information that's not included in your Plan, please see our Table of Contents.

As you review steps you want or need to take:

• Note our suggestion about how issues and subjects be prioritized. Feel free to create your own priorities. There's no right or wrong way to travel this road. Only the way that works for you.
• Focus on one step at a time. Break things down into smaller steps, each of which is doable for you. It's like writing a book. It's hard to think about writing an entire book. It's easier to think about writing one sentence at a time.
• Ask for help when you need it. In addition to the people close to you who want to help, we provide resources.
• Emotions may bubble up from reading this Plan. If so, move through them. The next section may have the subject you hadn't focused on that will make today better.
• Keep in mind that there's no need to be a super hero. Do your best.

As a person who has recently been diagnosed with breast cancer, it may be the last thing you want to hear, but just about every aspect of your life will never be the same. Once your world settles down, it will be to a new normal.

New normal is here to stay.

Assuming a positive outcome to your current battle, there will always be the risk that breast cancer will return, or a new cancer will appear, or something else totally different will happen.

No matter how many years pass, you will always see the world through diagnosed eyes.

• Live with hope. There is no such thing as false hope.
• "Live" with a health condition, rather than spend time "dying" of it.

To expect the best may be a change in habit for you. If so, it may take time to change. It's worth the effort to try -- and to keep trying.

• Balance optimism with the reality of day-to-day living.
• Keep in mind that the medical world is your key to survival. Information, your economic world and your support team are key to accessing the medical world and to thriving. It's worth the effort to put them into the best shape that you can.
• Get your body into the best condition you can to fight illness. Exercise, eat well and get rest. They're even more important in your new normal than they were in your old one.
• Get the legal ends tied up. You'll have control if a "what if" happens - plus you'll get immediate satisfaction from completing an important job.

• Be pro-active, in control of your new normal.
• Use all the resources available to you.
• Think of the people in your life as part of a team to support your needs. Your team includes people in your personal life as well as all the professionals. You're captain of the team, Chief Executive Officer of the company, lead partner - or however you want to think of the group and your relationship to it. If you want to turn over the decision making in particular areas to other people, that's your choice. At least after reading your Plan, your decision will be an informed one. (To learn more about your team, see Your Team.)
• Being in charge can be lonely and intimidating at times -- even overwhelming. Keep in mind that it is a small price to pay to achieve the outcome you seek.
• Do your best. That's all we can do. We're all human.

A diagnosis can make a person feel very alone -- no matter how recently or long ago the diagnosis. It's true that nobody can walk in your shoes. However, the odds are you are not alone.

Consider the people in your medical, professional and personal life as part of a group who are there to help in your battle. Think of the group in whatever terms work best for you. Perhaps it's:

• A team over which you are the captain.
• An army over which you are the Commander-in-Chief.
• Your very own support group and you're the leader.
• A coalition of allies, but you're the leader.

Whatever you call the group, as the person who cares most about your life, it's your job to coordinate the team to meet your needs. If you're not up to the job, ask a close family member or friend to help. Or take charge of a part of it, and ask the person or people to be responsible for other parts.

Take the time to think through your needs. It may be easier if you put the list in writing. For example:

• Medical
  • General: primary care doctor
  • breast cancer: specialist
  • Advocate to go with me to important doctor appointments
  • Help getting to the doctor
  • Help filling prescriptions
• Legal
• Attorney to help with (or at least confirm) my Will, Living Will, Health Care Proxy and other advance directives
• Tax attorney
• Real estate attorney
• Emotional support
  • Day-to-day support.
  • Help coping.
• Help cleaning the house. Decide who will fill each of your needs. Keep in mind that:
• Your needs are likely to change so you need to keep reconsidering what your real needs are, and who is best to help fill them
• Team members may come and go -- both on a professional and personal level

Make it the best team you can.

Set goals for each of the different members of the group.

• Just because a person volunteers to do a particular thing for you doesn't mean you have to agree.
• Likewise, if a person wants to spend a lot of time with you, it doesn't mean you have to spend more time with him or her than you want.
• If a person wants to be your caretaker, but you don't want that person in that role, give him or her another job to do.

More Information Support Groups How To Choose A Specialist How To Choose A Primary Care Physician How To Choose A Lawyer

Let your children know your needs to the extent that they can understand them. For insight into how to speak with your children, see Telling Your Children About Your Diagnosis.

Let each member of the personal part of your team know your needs and goals.

• Tell each person your needs and goals.
  • Let each person know the part you expect him or her to play.
  • Also let people know what to expect of you.
  • You can set limits with friends and family.
  • Listen to and consider their point of view to help hone your mutual objectives and get a realistic understanding of what to expect.
• Make sure that each person adds to the team goals -- which really means your goals.
• Coordinate the members. If questions or situations involve more than one of your team members, set up a means of having them communicate with each other. For example, set up a conference call or ask one of them to do it for you. Most phone services now come with the ability to make conference calls.
• Work through problems with any team members.
• Replace team members that don't work out.

More Information Working With An Attorney Maximizing Time With Your Doctor Related Articles Choosing a Specialist Choosing a Doctor For A Second Opinion Choosing a Primary Care Doctor Accountant Insurance Broker Investment Advisor Nutritionist

It takes time for everyone to adjust.

• Adjustment can be difficult.
• Adjustment is ongoing as the situation constantly shifts.

• Being open with each other goes a long way to making sure each person's needs are met.

Take time with the people closest to you, particularly your spouse.

• Talk with each other about the emotions each of you are feeling.
• Share your fears.
• Listen.
• Be honest and open.
• Work it through.
• Be loving.

A diagnosis of breast cancer predictably brings emotional upheaval.

• A diagnosis can make you feel very alone and distanced from your friends and family.
• Strong emotions are stirred up such as fear, anger, denial, frustration, guilt, withdrawal, and depression. Depression may be so severe it can be difficult to function.
• Each of these emotions are likely to show-up in no predictable order or time, especially hopelessness and tears.
• An emotional roller coaster is normal.
• Sometimes emotions even surface with more than one at a time.

• There will always be days with good news and days with bad news. Keeping that in mind will help make the bad news will be more bearable.

Spirituality can provide a major source of support.

• In a spiritual world, you are not alone.
• There are countless paths to spirituality. The right path is the one that works for you -- whether it's through religion, new age thinking or your individual belief.
• If you haven't found spirituality -- stay open. Things tend to take on a different perspective after a diagnosis. Listen to your inner voice.

• If you have found it -- encourage it. Don't be surprised if it changes or deepens. Diagnosed eyes see differently.

While we suggest in the Employment category that you start seeing a therapist in case at some point you want to stop working, there are good emotional reasons as well. You've been dealt a major blow. You have treatment and other major decisions to make. Particularly now, expression of your emotions is important. So is support.

Unlike a support group, even a few sessions with a psychiatrist, psychologist or social worker gives you the opportunity to discuss whatever comes up one-on-one.

More Information Choosing A Therapist

You cannot be discriminated against because of your health history if you attempt to purchase or rent an apartment or house.

Lenders are not permitted to ask about your health condition, or to take it into account when considering a loan application.

If you rent your residence, you may even be entitled to ask the landlord to make reasonable modifications to the apartment, or even the entrance, to accommodate your condition. 

More Information Americans With Disabilities Act Real Property

Before you travel, some of the most important things to consider are:

• Get a health check-up.
• Make sure the destination is safe for you given your current state of health.
• Check your health insurance well before you go to find out what is and is not covered. If there are gaps, purchase a travel insurance policy.
• Obtain enough of the drugs you take for the entire trip, plus a few days in case you get delayed. Keep your drugs and a copy of the prescriptions with you instead of in your luggage.
• Take with you a copy of whatever Advance Directives you have, such as a Living Will, Health Care Proxy and/or DNR.

• Pack a photocopy of your passport in your suitcase.

It's possible to hire skilled nurses to travel with you to administer medications, monitor care and generally help you get around. There are even organized tours for frail or disabled travelers with nursing care available. Another option is to hire skilled nurses in each place you visit instead of traveling with them.

If you didn't read about your "new normal" see The Basics.

More Information Enforcing Living Wills And Other Advance Directives

Take proper precautions at your destination. For example, always be aware of whether the drinking water is safe -- even if you only travel in the United States. If water in a locale is to be avoided, then follow safety guidelines.  

More Information Travel Advance Directives

According to federal law, you can't be discriminated against due to your health condition by:

• Health care providers
• Hospitals
• Places of lodging
• Restaurants
• Stores
• Other places where the public gathers

Reasonable accommodations must even be made for your needs. 

More Information Americans With Disabilities Act

Some people with breast cancer think of their diagnosis as a death sentence. The thought occurs: "Why not lie on forms or to agencies to get what I want? I won't be here for the consequences."

Lying is not a good idea.

• Any prognosis other than a short term one is uncertain. People even survive the worst odds.

• Plus, in the information age in which we live, it's all too easy for a lie to come back and haunt you -- particularly at a time when you can least afford it.

Simple tips don't have to take a lot of time or involve a lot of expense. Some of the expense may be covered by insurance.

If you do lose your hair or your eyebrows, keep in mind that hair is like a perennial plant -- it usually comes back. 

More Information Wigs Looking Good Hair Loss

While you may be surprised to see this subject in your Plan, a CEO knows the value of giving on a daily basis: both one-on-one and as a member of a group.

• It helps you feel good about yourself and in general. The amount or form of the giving isn't as important as the act. Deeds can be as simple as helping someone across the street, or complementing the work of an aide in the hospital.
• As mentioned above, volunteering for an organization can help you learn new skills or hone existing skills to better your position in the job market.
• If you volunteer with a local or national group involved with your condition, you'll learn tips about the practical aspects of living with your health condition. You'll also be in a preferred place if you ever need the services of the organization with which you volunteer -- or need access to other organizations that they can call for you.
• Alternatively, volunteer for an organization that fits your passion.

Many people refer to their diagnosis as a "gift." It's as if they were sleep-walking until a diagnosis woke them up to the joy and wonder of each moment of being on the planet.

Looking at the glass as half full, or looking for the silver lining doesn't change the reality of your life -- but it does make it easier.

• Focus on the new view that you've gotten since your diagnosis. Perhaps there's a new meaning that wasn't there before. Or a new path.
• Let go of the things that don't matter any more.
• Focus your strength on what you need to do to win your battle.

More Information Volunteering

Many people refer to their diagnosis as a "gift." They say it's as if they were sleep-walking until a diagnosis woke them up to the joy and wonder of each moment of being on the planet.

Looking at the glass as half full, or looking for the silver lining, doesn't change the reality of your life -- but it does make it easier. For instance, consider the following:

• Focus on the new view that you've gotten since your diagnosis. Perhaps there's a new meaning that wasn't there before. Or a new path.
• The chinese symbol for "crisis" is "opportunity".
• Focus on the people you care about, and that care about you. Let them know you care about them -- not just once a year on their birthday, but often. It may not be your style, but maybe it's time for a new style. It frees them to respond in kind -- and doesn't that feel good?
• If there are old friends that you've had a falling out with and are waiting for the right time to patch things up -- now's the time.
• Let go of the things that don't matter any more.

• Focus your strength on what you need to do to win your battle.

Now that you know how to prepare for the "what ifs…" -- hope for the best.

To learn more about hoping for the best, as well as preparing for the "what ifs," see The Basics.

Information that makes it much easier to live successfully with your health condition

Managing Your Care

• Getting Through To A Doctor On Your Schedule
• Choosing A Specialist
• Durable Medical Equipment
• Clinical Trials
• Medical I.D.

Work

• The Bigger Picture -- Maximizing Satisfaction And Pay

Finances

• Avoiding A Financial Crunch
• Borrowing From Friends And Family
• Making Notes Can Be As Important As The Conversation
• Getting And Staying Organized
• Storing Your Documents

Planning Ahead

• Ethical Wills

Day To Day Living

• Assign Jobs To Your Team Members
• Family And Friends
• People Can Come And Go
• Saving Time
• Transportation
• Travel
• Public Accommodations
• Lying

Wellness        

• Coping With Waiting
• Express Your Emotions
• Humor
• How You Look
• Volunteering
• Spiritual
• The Half Full Glass

There are at least ten advantages to owning a pet.

While dogs and cats may be the first pets to come to mind, there are all kinds of pets with different characteristics to suit your needs and lifestyle. 

Before buying a pet,  think carefully about the responsibility and how it will be carried out on a daily basis. Also consider how the responsibility will be carried on if you can't. 

• There are veterinarians who will make house calls.
• Someone should be appointed to take care of your pet in case you become incapacitated.
• You can provide for a pet in your WIll, though not by leaving money directly to the pet.It is easier than ever to travel with a pet. 

Also think through how to save money as you live with a pet -- including whether to get pet insurance to protect against potentially catastrophic costs.

• In a spiritual world, you are not alone.
• There are countless paths to spirituality. The right path is the one that works for you -- whether it's through religion, new age thinking or your individual belief.

• Things tend to take on a different perspective after a diagnosis. Listen to your inner voice.

Don't be surprised if it changes or deepens. Diagnosed eyes see differently.

Look for humor in your daily life. It's there. There are even seminars that teach humor.

If it's easier to get humor from the media, check out reruns of comedies on television. Some mobile phone services have services that deliver a joke-of-the-day.

Alternatively, learn a joke every few days and keep telling it.

As you will see, there are many criteria that can be used to determine whether a doctor is the best one for you.  

At the least, look at:

• The doctor's education and experience.
• Your comfort level with the doctor. You need to be comfortable enough to tell the doctor all the symptoms you experience. What you tell a doctor is as important as any objective diagnostic tests.
• Whether you understand what the doctor tells you.
• Whether the doctor is a person you trust.

Choosing the best doctor for you is similar to researching an automobile -- but will probably take less time. It's time well spent considering the importance to your health.

HOW TO CHOOSE AN ONCOLOGIST

There are five steps to choosing an oncologist:

Step 1: Decide what type of oncologist you need.
Step 2. Set criteria that work for you.
Step3: Search for doctors that most closely fit your criteria.
Step 4: Speak with the doctor's office to gain practical information.
Step 5: Meet the doctor

To learn more, see: Choosing An Oncologist.

HOW TO CHOOSE A PRIMARY CARE DOCTOR

Choosing a primary care doctor involves the same steps as choosing an oncologist.

The specialty to look for is Internist. Internists basically specialize in adult medicine.

While the steps for choosing a primary care doctor are the same steps as choosing an oncologist, the criteria you apply may be somewhat different. For example, convenience and office hours may be more important to choosing a primary care doctor with whom you're hopefully going to have a long relationship.

Ideally your primary care doctor will also work with the same hospital as your oncologist, but it is not critical. If the doctor doesn't work with that hospital, she won't be able to provide you medical care there.

HOW TO CHOOSE OTHER SPECIALISTS

You may need to see specialists other than oncologists. Vary the criteria you use to choose a doctor depending upon the function. For example, if you are seeking a second or third opinion, travel distance to the doctor and ease of parking aren't as relevant as a doctor you see all the time.

For a list of comprehensive cancer centers see the National Cancer Institute list at www3.cancer.gov/cancercenters/centerslist.html#L22

More Information Choosing A Primary Care Doctor Choosing A Specialist The Three Types Of Oncologists Choosing A Doctor For A Second Opinion Choosing A Hosptial Locating A Doctor Factors To Consider About A Doctor Interview The Office Staff Interview The Doctor Uninsured How To Deal With A Financial Crunch

If you enter the hospital through the front door, there is usually time to choose which hospital. If you've taken our suggestion for choosing a doctor, you have already considered the quality of the hospital with which he or she can work (has "privileges.")

Look for:

• A high quality hospital that has a good success rate for the reason you're going there.
• The quality of the staff
• Low infection rates. Aside from making your stay miserable, or extending it, infections contracted in hospitals are the fourth largest killer in America. Every year in this country, two million patients' contract infections in hospitals, and an estimated 103,000 die as a result, as many deaths as from AIDS, breast cancer, and auto accidents combined.
• A hospital that does not fight the kind of wishes you have if you have an end-of-life event.

If there's a choice, decide whether you want to go to a surburban hospital near where you live, or to a larger, urban hospital. Suburban hospitals usually have more friendly nursing care, and are easier to visit for friends and family. On the other hand, suburban hospitals do not generally have the back-up staff of high quality professionals who've "seen it all," with a depth of doctors trained in other disciplines and high tech testing equipment in case they're needed.

To maximize your care in a hospital and minimize the chance of a medical error which harms you -- you have to monitor your own care. You have to learn what to expect and how to deal with it. It's important to watch every pill you're given, every IV they want to put into you, even the way they take your temperature.

If you can't do the monitoring, have a patient advocate with you 24/7 if at all possible. This may sound unduly harsh, but over 100,000 people die a year from errors in hospitals. Getting someone else's pill or i.v. may not matter, or it may literally be lethal.

Make your stay in a hospital easier by keeping in mind such things as:

• Visitors are there for you. If timing is bad, or you need to cut the visit short, say so -- or ask your advocate to say it for you.
• Keep people from calling and disturbing your rest by a daily posting on a web site or setting up a human phone tree.
• Make your room more comfortable by bringing in photos and personal items.

When it's time to check out of the hospital, don't leave until you know what to expect, what to watch for, and what to do if what you're watching for occurs.

Always check your hospital bill. A high percentage of hospital bills have errors. If you can't read the bill, go over it with a hospital representative.

More Information Hospitals 101 Emergency Rooms

The media has a habit of giving coverage to announcements of medical break throughs well before they are sufficiently tested. Before relying on any such reports, use the same techniques as when coducting medical research.

For example:

• Many reports concern break-throughs in a test tube that have not yet been tested on human beings.
• If break-through tests involve people, they are usually a small number of people, with tests that involve a short period of time.
• The companies announcing the news may have a conflict of interest.

More Information Medical Research

Learning about breast cancer is essential to being an informed patient. The more you know, the better you'll be able to maximize the benefit of the health care system and to  make informed decisions.

Becoming informed doesn't mean you have to become an expert with knowledge equal to a doctor's. That's his or her contribution to the decision-making process. You only need to become an informed consumer.

The best source of information is your doctor. However, as you know, your doctor will only have limited time, with a lot of ground to cover. You may want to supplement what your doctor tells you with your own research. It's a good idea to learn:

The medical terms for your condition

Using medical terms will:

• Help make the conversation with your doctor more precise.
• Save precious time with your doctor.
• Help doctors relate to you more as an equal which should make it easier for them to accept that you are the decision maker.

The latest treatments

Your doctor may be too busy taking care of people to be up on all the latest treatments, or she may be restricted from talking about some of them by an insurance provider or her partners, or she may be biased toward a treatment she knows well and is used to.

Potential "Side Effects"

Side effects can sometimes be more difficult than the original condition. Side effects are often downplayed in conversation with a doctor.

The markers

Know the meaning of the markers that will be used to determine how you're doing in your battle.

CAUTION: Misinformation can be deadly -- particularly information on the internet. When searching for information on the internet, check to see if the creator of the site has a financial interest in the information it provides. If a study is cited, was it conducted by a disinterested person or group?

Don't be overwhelmed by "what could happen."

• Research inevitably brings up horrors -- even if it happens to one person in a million. Just because things happen, doesn't mean they will happen to you. For example, a person with a rare cancer who is treated at a major comprehensive cancer center is likely to do better than a person treated by a non-specialist in a clinic in a rural area.
• Speak with your doctor about your fears, and ask for a perspective of how often the things happen about which you're concerned.
• Remember: "hope for the best."

If you have questions about how the information you find relates to you, ask your doctor. Other people you can ask: a nurse, another doctor, or a knowledgeable person at an insurance provider. If you're in the hospital, also ask the patient representative.

Also see:

• American Cancer Society: www.cancer.org 
• BreastCancer.org: www.breastcancer.org
• Living Beyond Breast Cancer: www.lbbc.org

You can also get information from other doctors, or a nurse, or the insurance company.

If you do research on the internet yourself, follow time-tested guidelines.

If you don't want to do the research ask a close, reliable friend to do it for you.

Related Articles How To Do Medical Research

There are basically two ways to work with a doctor:

1. You can turn the decisions about your health care over to the doctor -- including decisions about tests, treatments and drugs.
2. You can act as partners, with the understanding that you make the final decisions.

More and more doctors and patients are moving away from the traditional standard of doctors making decisions to patients making decisions. There are a batch of reasons for the shift.

Making your own decisions about your health is more stressful and more work than letting a doctor make decisions for you. However, studies show that health outcomes are better when you take control. It's also likely to be better for your mental health because you feel more in control.

If you would prefer to let the medical system make the decisions, or a particular doctor, that is also a valid choice. When it comes to these kinds of decisions, the key is to be informed. There is no right or wrong.

More Information How To Talk with A Doctor Video Pattern for Examining Room Gown How to Assert Yourself Patient Advocates

PREPARE FOR EACH APPOINTMENT

To prepare for each appointment, keep a health journal.

Make an entry in your journal every time:

• Symptoms change. If you have several ongoing symptoms, or if the severity of your symptoms keeps changing, keep a Symptoms Diary.
• A dose is missed.
• You have a reaction to a drug.
• You think of a question or concern you want to talk about with a doctor.
• You have an appointment with a doctor.

This may seem like a lot of work, but it really isn't once you get used to it -- particularly when compared to the enormous benefit. The journal gives instant clarity to patterns and is a reminder of details we quickly forget. It's difficult to remember what symptoms were like two days ago, much less weeks ago.

Before each appointment, use the journal to:

• Create a list of your questions and concerns.
• Summarize what happened since the last time you saw the particular doctor. If you don't create a summary, the doctor will have to take the time to review the journal when the two of you are together. That would waste valuable time which would be better spent examining you or discussing what tests and symptoms mean and what to do about them.

If you don't have time before, write the summary and your questions while you're in the doctor's waiting room. If you're not up for it, ask a friend or relative to write the summary for you.

If the appointment usually involves a lab test, consider taking the test ahead of time so you and the doctor can review the results when you're together instead of during a later phone call or at your next appointment.

TAKE TO EACH APPOINTMENT

Take to each appointment:

• The summary of events since your last appointment.
• A list of questions and concerns.
• Your health journal in case the doctor wants to see any specifics.
• A list of your current medications.
• A patient advocate to help ask questions and to remember what was said or at least a memory aid such as a tape recorder or a pad and pencil.
• Stuff to do in the doctor's waiting room, and the exam room while waiting for the doctor.

WHILE YOU'RE IN THE WAITING ROOM

While you're in the doctor's waiting room:

• Review the information you have for the doctor and the questions and concerns you want to raise.
• Keep yourself busy.

DURING THE APPOINTMENT WITH A DOCTOR

Communicate effectively with the doctor.

Tell the doctor what she needs to know.

• Listen.
• Learn what you need to know.
• Communicate as an equal.
• Make a note to read our in-depth article on communicating effectively with your doctor. Good communication with your doctor is essential.

At each visit, tell your doctor about how your health condition affects your work ability to work and your daily activities. Ask that the doctor note this information in your medical record. In addition to being part of disclosing everything to your doctor, these notations will start building your case in the event that you ever want to apply for any type of disability benefits.

More Information How To Work Effectively With Your Doctor Health Journal Preparing For Appointments With Your Doctor

These days, time with a doctor is usually very limited. Depending on which study you believe, average times range from 12 to 17 minutes. Since this is the average, some times are even shorter.

To maximize your time together:

Take a patient advocate with you -- at least to important sessions when you expect to receive news or to discuss a new drug or treatment. A patient advocate can bring up embarrassing subjects you're reluctant to bring up, ask hard questions, help level the playing field against the doctor, help understand what is going on, or simply help you remember what is said. A patient advocate could be a friend, family member, someone in your community, or even a professional.

If you don't take an advocate, (or even if you do), at least take a recorder to record the session so you can review it later to be sure you understood and remembered everything.

Learn how to most effectively communicate with a doctor. It's not easy when:

• One person in a relationship is called "doctor" and the other one (you) is called by your first name.
• One person (the doctor) is dressed and the other (you) is naked or near naked under an examining room gown.
• One person is lying on an examining table, and the other towers over.

Good communication includes:

• Telling what you need to
• Asking your questions in order of priority -- and questions about anything the doctor says that you don't understand
• Understanding what you're told

To help you level the relationship, we have an article filled with tips and a series of videos that show you how to put the tips into practice.  One of the tips is to get past the awkwardness of being exposed in an examining gown by wearing one at home. If you can't get one from your doctor's office, put on a large man's shirt or a bathrobe backwards.

To learn more, see Video: Talking With Your Doctor, Video About How To Talk With A Doctor

More Information Questions To Ask If You Receive A New Diagnosis A Pattern For A Hospital Gown Questions To Ask If The Doctor Recommends Surgery Questions To Ask If The Doctor Recommends A Drug Tips On Leveling The Playing Field With A Doctor Questions To Ask If The Doctor Recommends A Treatment How To Work Most Effectively With Your Doctors

A question to consider when thinking about conversations with your doctor is: Do you want to know your prognosis? 

A prognosis is an individual doctor's guesstimate about whether your cancer will be cured or your likelihood of dying, and when. It is based on statistics and trends -- not what will happen to you as an individual.

• Statistics are about what has happened in the past -- not what will happen, especially with the constant stream of medical advances.
• Statistics are about large numbers of people, not about what will happen to any particular person.
• Statistics include everyone such as the people who do not have the information contained in this report or access to the health care system.
• Even the best and most experienced doctors are often wrong when giving a prognosis. Most of us know of a person who was given six months to live and who is still going strong ten years later. Even worse, according to respected doctors like Dr. Bernie Siegel, a prognosis may become a self-fulfilling prophecy to be guarded against.

Most doctors wait for you to indicate the extent of your need to know. 

Decide how much you wish to know, if at all, about your prognosis. There is no right or wrong here -- only what works for you.

Since we're all different, when thinking about whether to ask, consider such factors as:

• How do you function best - by knowing everything, including everything that could happen, or by not knowing and taking a day at a time?
• When difficult things have happened in the past, how have you coped best?
• If you got a great prognosis, what would you do differently? If you got a poor one? (If there are things you'd do differently, what is keeping you from doing them now?)
• How important is it for you to know? Or, to put the question another way: How will knowing a doctor's prognosis help?
• Do you have support to deal with any anxieties that come up?

If you do want to know your prognosis, when you ask, also ask how certain your doctor feels about the opinion. For example, on a scale of zero to 100%, what does she think are the chances her projection will happen? If you have more than one doctor, it may be useful to ask the others as well. Don't be surprised if the opinions vary greatly.

As an alternative, consider asking allied questions such as:

• Have you ever known people with this disease who have gotten better?
• What is the likelihood of remission?
• If you're considering a treatment: What is the success rate for patients like me? Are there studies that were done on patients like me?

Imagine a world where:

• Your medical records are on a computer that is accessible by your health care providers everywhere in the world 24/7.
• When you see a new doctor, you don't have to use the energy and precious time to fill out a different variation of the form you filled out for every other doctor.
• The only delay between appointments would be the availability of the doctor -- not waiting for a copy of test results or scans.
• Every time you see a doctor, what the doctor found, what was discussed, and what was decided, would be entered in a record for you to keep.
• Each of your doctors were informed the minute any other doctor made a change in your health care - such as lowering a dose of a drug, or adding a drug, or telling you to stop taking one. Since each of your doctors would know instantly what another doctor is recommending, simple mistakes would be prevented before they hurt you.

Until that world exists, it's up to you to make these things happen. If you're not up to it, ask a friend or family member to do different parts of these important chores for you. They will:

• Save you an enormous amount of time and stress.
• Make you a more informed consumer.
• Make things a lot easier on your memory banks.
• Help prevent life altering errors -- and possibly save your life.
• Provide a fail safe if something happens to your doctor or her office.

These ideas seem like a lot of work, but it's not as much work as you think. Plus the bulk of the work is at the beginning. Then it's only a question of keeping things up-to-date. If you're not up to a given task, or at a given time, assign the job to one of your team members.

• Create a list of your medicines, including dosages. Carry the list to you each time you see a doctor. Also carry a copy with you at all times (such as in a wallet or purse) in case of emergencies.
• Create a medical journal, either in a folder or a notebook. Include a sheet for contact information for each of your doctors and facilities including name, phone number, fax number, e-mail address if you can get it, and street address.
• Get a copy of your medical records to date relating to your current condition. Also get the records about any other ongoing health conditions, conditions which could recur, surgeries and major health situations.
  • Check the records to make sure they're accurate. It's easy to see whether the pages relate to you or someone else entirely or you see key words that relate to the condition in question. You don't need to understand all the medical jargon.
  • If you can't read something in the chart, neither can other people. Ask to have it clarified.
  • If you do have questions, ask the doctor or nurse.
• Before each appointment, test or scan, let the doctor or other appropriate person know you want a copy for yourself of the results -- including the results of all tests and/or film such as from X-Ray, MRI, CT or PET Scans.
• During each visit, remind all doctors and other experts to send notes about your appointment to your primary care doctor.
• After each appointment or medical encounter:
• If you are comfortable with the idea, create your own summary of what happened during the meeting.
• If not, ask the doctor's staff to prepare a summary and fax it to you. Give them a deadline which works for you both, such as one or two days. Make a note in your calendar to follow up if you don't receive the copy.
• Be sure the summary includes test results, and any changes in prescriptions. Also get copies of any scans or films.
• Send the summary by fax or e-mail to each of your doctors with a cover note asking them to review the information and to contact you immediately if they have a comment. Scanners and fax machines are very inexpensive these days and well worth the investment. The more doctors you see, the more important this step is.
• If a drug or a dosage is changed, also be sure to change it on your list of medications, including the copy you always carry with you.
• If you go into the hospital, ask for:
• A summary of what happened
• A copy of the entire file
• File everything in one place.
• Office supply stores can guide you through storage systems.
• If money is an issue, cardboard boxes can work just as well.
• It may sound silly, but make sure your records and films aren't accessible by children or pets.

More Information List of Medications Medical Journal

When doctors give you different opinions, it's difficult to know what to do. Even if you do your own research, unless you have medical expertise there's the sinking feeling that no matter how much you know, or how much research you've done, you don't have the expertise to make a decision.

This is not a time to make a decision based on loyalty to a particular doctor or hospital.

Consider the following possible courses of action:

• Ask the doctors to explain to you the way they see the facts and their reasoning.
• Ask the doctors to speak with each other to see if they can resolve their differences -- or at least establish areas about which they agree.
• Solicit opinions of additional specialists. Consider seeking a specialist in another city since doctors in a given locality tend to practice alike. Your insurance provider may even pay for a third, fourth, fifth etc opinion.
• Enlist the help of someone with general medical knowledge who is not a specialist in the area. This could be your primary care physician and/or a medical research service.
• Speak with informed friends. Each discussion will help you think of questions, and a different perspective of the risks and benefits of any proposed course of action or information.

Don't stop until you are satisfied that you understand the situation and believe you have enough information to make a decision.

Related Articles Primary Care Physician Medical Services What To Do If Doctors Have Differing Opinions Or Recommendations Getting Your Insurance Provider To Say Yes

As a general matter, a recommendation to take a drug or undergo a treatment starts with the suggestion of one of your doctors. While it's important to trust your doctor, it's your choice whether to go along with the doctor's recommendation.

When deciding about whether to take a particular drug or treatment:

• What is the goal for your taking the drug or treatment?
• What is the likelihood of the drug or treatment accomplishing the set goals?
• What are your priorities? For example, is pain relief more important to you than a clear head?
• How does the drug/treatment and side effects measure against your priorities?
• EVERY drug or treatment has risks. What are the risks with the one you're considering? Are they acceptable? To put it another way, are the risks worth the possible rewards?