My Survivorship A to Z Guide

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 and other health care providers. 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 following information:

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 not 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"

Although there have been great strides in minimizing side effects and dealing with those that do occur, side effects can sometimes be more difficult than the original condition. Side effects are often downplayed in a 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" or the worst case scenarios that often surface during research. Just because things happen, doesn't mean they will happen to you. 

If you have questions about how the information you find relates to you, ask your doctor. Other people you can ask: another doctor, a nurse, a nurse navigator, 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

If you don't want to do the research ask a close, reliable friend to do it for you. There are also services that will do the research for you.

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 are likely to 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.

PREPARE FOR EACH APPOINTMENT

To prepare for each appointment, keep a health journal.

Make an entry in your journal every time:

• Your symptoms change. If you have several ongoing symptoms, or if the severity of your symptoms changes, keep a symptoms diary. We provide one for your convenience. Click here.
• You miss a dose.
• 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.  (We provide a list for your convenience. To see it, click here.)
• A patient advocate (such as a family memer or friend) 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. (Professional patient advocates are available if desired.)
• Things to do in the doctor's waiting room, and the exam room while waiting for the doctor.

WHILE YOU ARE IN THE WAITING ROOM

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

 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, consider the following (in addition to taking a Patient Advocate with you as suggested in the previous section):

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. Recorders are very inexpensive. There may even be one on your mobile phone.

Learn how to most effectively communicate with a doctor.

It can be difficult to communicate easily 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  the doctor what he or she needs to know.
• Asking your questions in order of priority -- and questions about anything the doctor says that you don't understand
• Listening.
• Understanding what you're told.
• Learning what you need to know.
• Communicating as an equal.

At each visit, tell your doctor about how your health condition affects your ability to work and your other 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

To help you level the relationship, Survivorship A to Z has an article filled with tips and a series of videos that show you how to put the tips into practice.  To learn more, see Video: Talking With Your Doctor, Video About How To Talk With A Doctor

NOTE: Asks permission before recording a conversation with a doctor.

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 your condition. 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.
• 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 prognosis help?
• Do you have support to deal with any anxieties that may 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 you and 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.

Technology advances and electronic medical records are bringing us closer to that day, but we aren't there yet. 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 help with some of these important tasks for you. Taking care of these tasks 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 a copy with you at all times (such as in a wallet or purse) in case of emergencies. Such a list is particularly important to have with you each time you see a doctor.
• 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. You can get a journal from such organizations as LiveStrong  or the American Cancer Society.
• Get a copy of your medical records relating to your current condition. Also get the records about any other ongoing health conditions, conditions which could recur, surgeries and major health situations. Depending on your doctor, you may be able to get these records online. As noted in our article about the subject, you are entitled to a copy of your medical records. There may be a reasonable charge.
  • 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 or someone else on your healthcare team.
• Before each appointment, test or scan, let the doctor or other appropriate person know you want a copy of the results for yourself -- including the results of all tests and/or films such as 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.
  • Ifyou are not comfortable with creating your own summary, ask the doctor's staff to prepare a summary and fax or e mail 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
  • A Discharge Summary which contains information about steps to take and not to take after leaving the hospital
• 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.

NOTE: If a patient navigator is available, he or she can be very helpful coordinating your health care with you and your health care providers.

It can be difficult to know what to do when doctors have different opinions. Even if you do your own research, it is common to still lack the expertise to make a decision. This is not a time to make a decision based on loyalty to a particular doctor or hospital. Instead, consider the following possible ideas and use the one(s) that work for you:

• 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.
• Ask the doctors to explain to you the way they see the facts and their reasoning.
• Solicit opinions of additional specialists - possibly even in another city. Doctors in a given locality tend to practice alike and you may get a totally different view point from a doctor in another city. Second opinions are so common that most health insurance pays for them -- even for a third or fourth opinion. (For information about getting second opinions, see "To Learn More.")
• Ask for help from 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. (See "To Learn More.)
• 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.

Do not agree to or refuse a treatment until you are satisfied that you understand the situation and believe you have enough information to make a decision.

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, the following questions may be helpful:

• 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?

Once you've decided to use a drug (whether it's prescription, over-the-counter, or a supplement), be a smart patient.

Do what you can to avoid medical errors. Starting with obtaining a readable doctor's prescription through having it filled and checking what you're given against what you expect. When you are at the pharmacy, ask the pharmacist to check the drug against the other prescription and over-the-counter drugs you are taking. For more information about avoiding medical error with respect to drugs, click here.

Avoid overmedication. It's all too common. If you're taking a drug in standardized form, the odds are you're taking more medication than you need.

Carry a list of your drugs all the time. Emergencies happen.

Over-the-counter items are also drugs and have to be treated that way.

Take care if you use herbs, vitamins or other supplements. They are not subject to FDA approval. Therefore, there is no guarantee about their safety or effectiveness. There is not even a guarantee that there will be the same mix of ingredients from bottle to bottle -- even for bottles from the same manufacturer.  Talk with your health care provider or phramacist about any supplements or vitamins you are taking, including the brand name.

Think about how to obtain drugs less expensively, whether you pay for them directly or through an insurance company. Insurance company expenses show up in your increased premiums.  If necessary, you may be able to obtain drugs for free or very low cost.

When buying drugs, also consider other important factors. For example, what happens if you need a refill in an emergency? Also keep in mind that a pharmacist can be a very important part of your team.

If a drug you want hasn't been approved for the situation in which you want to use it, an insurance provider may refuse to pay for it. Get your ducks in a row before you ask the insurance provider. Appeal if it says no. Work with your health care team to get it approved.

If the current drugs on the market don't satisfy your needs, there may be drugs to consider that are still being tested for safety. Access to these drugs is through clinical trials -- controlled tests where use of the drug is medically monitored. It's essential that you be fully informed before entering a clinical trial. Talk with your health care team about clinical trials for which you may be eligible.

Live with drugs wisely:

• Comply with the directions that come with a prescription. Make sure that you follow the directions from your doctor or pharmacist about taking your drugs. Non-compliance can be harmful. Time tested tips help if you have difficulty complying.  For compliance tips, click here.
• Don't share drugs.
• Store drugs correctly. Not in a medicine cabinet in the bathroom because of the moisture.
• Dispose of unused drugs safely.
• If possible, keep a few days worth of drugs in a safe place nearby in case of a disaster. For example, if you live in a flood prone area, leave a supply with a friend who lives on higher ground.
• Travel well with drugs. Carry a copy of your prescription. Carry an extra supply in case you get delayed.

Stay open to change decisions about drugs and/or treatments as your situation changes over time.

It is preferable to think of these techniques as complementary to our traditional, science based, western medicine instead of as  "alternative." There is no practical reason to consider Eastern medicine or other techniques instead of Western medicine.

Give any complementary treatment you're considering the same consideration you would give to taking any drug or treatment. The treatment could be dangerous to your health, or react negatively with your treatment or prescribed drugs.Since most complementary treatments are not subject to government licensing or approval, and industry standards may not exist, seriously consider the pros and cons.

Also be sure to tell your doctors about any complementary activities, drugs or treatments you use.

Complementary therapies are being covered by more and more insurance providers. Check yours to see if a treatment you are considering is covered. If not, it's worth building a case to try to get the insurance provider to pay.

There are likely to be some side effects to the drugs and treatment(s) you take such as nausea, diarrhea or sleeplessness.

Fatigue can be a particular problem. It could be caused by your condition, treatment or other factors such as anemia (having too few red blood cells), poor nutrition, not drinking enough liquids and depression. Pain can also make fatigue worse.

To learn about various side effects and for tips about how to reduce the effect in addition to any medical treatment your doctor may prescribe,click here.

To keep track of your symptoms so you can report them accurately, keep a symptoms diary. Print the diary and take it to your next doctor's appointment. For your convenience, we provide an online Symptoms Diary.

It used to be that pain was believed to be a part of having a disease. Today there is an ever increasing arsenal of drugs and other treatments available.

If you experience ongoing pain, or a treatment you're considering is known to be painful, ask your doctor about managing the pain. If necessary, consider asking your doctor to refer you to a pain specialist.

Treating pain is likely to include trade offs (as there are with any drugs) -- but it's up to you to weigh the pros and cons for your life. For instance, if you're a lawyer, you may prefer to be in some pain rather than have your brain dulled by certain pain medications.

When doctors work to control symptoms as well as treat the disease, it is known as palliative care. Palliative care focuses on the patient's social, emotional and spiritual needs as well as the physical ones. If you use the term "palliative", do not be surprised if people think of "palliative care" in the older sense of only relating to keeping people comfortable at the end--of-life. It is now used in the wider sense described here.

The better your body functions, and the fewer battles it has to fight at one time, the more resources it can devote to fighting Breast Cancer.

SMOKING

Try to quit smoking. You already know how bad smokng is for your health.  Also think of the co-pays you could pay for with the money you literally burn. Think of the example you're setting for the children in your life that you care about. If you can't stop smoking, talk with your doctor about the best alternatives to help you quit. For tips that have helped other people stop, click here.

USE ALCOHOL IN MODERATION

Recent studies show that one or two glasses of wine a day may be helpful for a variety of reasons, including reducing stress. At the other extreme, an excess of alcohol can interfere with the effectiveness of certain treatments, such as chemotherapy. It can also interfere with certain drugs, or taking them when you're supposed to. If you drink, moderation is the key. To learn what quantity of alcohol, if any, won't affect your condition or treatments, speak with your doctor.

IF YOU TAKE RECREATIONAL DRUGS OR MEDICAL MARIJUANA, TELL YOUR DOCTOR

Your doctor needs to know about everything that could affect your health and/or treatment. 

EXERCISE

Our bodies need exercise to function at an optimal level. If you haven't been exercising, consider starting now. Of course, don't start any new exercise program without checking with your primary care doctor or your specialist.

In fact, it would be helpful to discuss your current exercise with your doctor or other health care professional. 

GET PLENTY OF REST

If it means you need naps during the day, figure out how to take them and not to be disturbed.

• If you need help sleeping, sleeping pills or tranquilizers may work for the short term. However, they tend to lose effectiveness over time. They can also be addictive. Just as with any drug (including over-the-counter drugs), speak with your doctor bgefore starting to take them.

• If you are having problems sleeping, ask your doctor about other techniques to help you sleep. Some techniques to consider: meditation, biofeedback, relaxation techniques and hypnosis, as well as teas and herbs. 

  If you are working, you may be able to get additional rest periods under laws such as the Americans With Disabilies Act (ADA).

STRESS

The ancient Greeks understood that there is a connection between the brain and body.

Modern studies of the mind-body connection are still in their infancy, but there is already proof that stress lowers the immune system.

Do what you reasonably can to reduce stress.

• Look for ways to take the stress out of a normally stressful situation. For example, think about what's causing the stress. Sitting at a red traffic light isn't stressful -- unless you're late. If you can't help being late, perhaps you can call ahead and take away the stress by letting them know what's happening.
• If stress hits, take a few minutes do a deep breathing exercise, preferably in a quiet place. It will almost immediately help break the stress.
• Consider complementary techniques such as meditation and massage. What could be so bad about being quiet for a few minutes each day?
• Spoil yourself a little. Consider:
  • A hot bath with a soft candle and a glass of wine. 
  • Taking a few minutes out of the work day to smell the roses.

If you can't reduce the stress, seek help to cope with it. Even if it doesn't affect your health, you'll live happier -- and that's undoubtedly a good thing. 

For tips about coping with stress, click here.

• Don't take unnecessary food risks when you purchase food, store or cook food at home, or when you eat out. 
• Even in the U.S., drinking water needs to checked for risks. Water which is safe for people without a serious health condition may not be safe for you. This is particularly important when you travel. Luckily information is readily available.  
• Avoid unnecessary infections in your everyday life, including in your mouth and from your pets.
• Keep your mouth and teeth in shape. You know the drill. (Yes, it was meant to be a pun.) Your condition or treatment could affect your teeth and gums. Infections in your mouth could spread through your body.  

After all the do's and don'ts you've read so far, you're probably skipping this section while you reach for the Haagen-Dazs or whatever your comfort food is.

Good nutrition is important to give your body fuel and energy, including the energy to fight a health condition such Breast Cancer.

Basically, it is advisable to think of every bite you eat as an investment in your health. A mix of some comfort foods is okay.  Given all the emotions that are likely showing up with a recent diagnosis, this may be the time to let comfort foods be a larger part of your diet. You can gradually shift to better and better eating habits.

Don't let comfort foods take over your life, or use your diagnosis as an excuse if certain foods are bad for your health.

This is a good time to start learning about food safety when you purchase food, store or cook food at home, or when you eat out.  

To maximize a stay in a hospital, consider the following. Information about each subject is in the articles in To Learn More.

• Before even entering the hospital, preplanning will help make your stay better.
• While in the hospital, participate actively in your care to make sure you maximize your care, minimize medical errors, and save money. Two of the simplest things to do are:
  • Make sure anyone who touches you disinfects his or her hands before touching you.
  • Ask a patient advocate to monitor your care. A patient advocate can be a family member, friend or even a professional patient advocate.
• Before being discharged, be sure to get a discharge plan which describes what to do, and not to, after leaving the hospital..