My Survivorship A to Z Guide

First instinct may be that this seems like overkill. Each of your doctors already has a copy of your record. Well, that's part of the problem.

Keeping your own copy of your medical records serves several important purposes:

• There is no delay waiting for appointments with a new doctor while medical records are copied and sent. This process has been known to delay appointments by weeks, and sometimes longer.
• If a disaster happens to your doctor's office, you're protected. (They didn't think it could happen in New Orleans either).
• You can review your records to make sure they are accurate so future recommendations and decisions aren't made on incorrect information..
• You can be sure that information you supplied the doctor for non-medical purposes is included. For instance, it helps your case if you apply for disability income benefits if the records have reflected how your health condition has affected your ability to work and your activities of daily living.

To make an appointment:

Experience indicates that you are likely to get an earlier appointment if you speak with a person rather than schedule an appointment by a medium such as the internet.

• If you can't get an appointment as soon as you'd like, it may be worthwhile to take the appointment you're given. Then let the scheduler know you'd still like an earlier date, to put you on the cancellation list, and to call you if there are cancellations. On average 10-20% of all medical appointments get canceled or changed each week.
• Rather than rely on the person to call, you can call periodically (say every few days, or every week depending on the circumstances)  to find out if there have been any cancellations and to remind the person you're still looking for an earlier date. 
  • Particularly call on a Monday morning about 10. The busiest time for cancellations is early Monday morning.
  • It's helpful to try to make friends with the person who schedules the appointment. 

When calling for an appointment, let the medical office know the purpose and objective of your visit. This will help to insure that you are given the amount of time that you need. (Medical office visits are generally divided into three categories: extended, intermediate and brief. These classifications are based on the amount of time that you will require with the doctor).

If you need an appointment with a specialist:

Ask the referring doctor's office to make the appointment for you. The referring doctor's office can explain the medical necessity for an earlier appointment. Also, since the doctor refers business to the specialist, his or her request is likely to receive priority treatment. 

If you have to make the appointment yourself, consider calling the chief of the particular department at a hospital in which the doctor works. Ask the assistant for a referral to the type of doctor you need, or perhaps to a specific doctor. Then, when you call for the apointment, you can say that "Dr. X, the head of ....." asked me to call and set up an appointment as soon as possible."

When you want to get through to your doctor with questions:  Ask the doctor or his/her team how to ask questions without an appointment. For example, by e-mail, or a time during the day the doctor sets aside for phone calls.

Just like any relationship, your relationship with your doctor may have its ups and downs.

If problems arise in your relationship with your doctor, see if they can be worked out. Talk them through with your doctor. If there's no time in a normal session, ask to speak with the doctor at another time -- in person or on the telephone.

If you can't get a satisfactory resolution of the problem, consider whether it's a reason for you to look for a new doctor. Think through your criteria in choosing the kind of doctor in question (for instance, primary care doctor or specialist.) Is the problem you are experiencing with your current doctor important enough to lead you to look for a new doctor? There's no right or wrong here. Only what works for you.

Before leaving your current doctor, also consider what additional doctors are available to you.

If you feel your doctor has harmed you, and you want to do something about it, there are alternatives to consider, such as suing. For information, click here.

Medical i.d. will ensure that in case of emergency, no one gives you any drugs which react adversely with any drugs you may be taking or that you may be allergic to.

It's also helpful to carry in your wallet:

• A summary of your medical history, including your diagnosis and the drugs you are currently taking. In case it works for you, there are portable devices that can hold your entire history that work as key rings that can be plugged into a computer.
• A list of your current medications.
• Contact numbers for your doctors.
• Contact information for people who are to act on your behalf if you become incapacitated and unable to make medical decisions for yourself, for example, the person authorized to act under your Advance Directives such as a Health Care Power Of Attorney.

To find out about transportation to and from medical appointments, consider the following:

• Ask your doctor, hospital or treatment center if they provide transportation or assistance.
• Contact the American Cancer Society at 800. ACS.2345. American Cancer Society has volunteers who drive people with cancer to and from medical appointments through a program called Road to Recovery. 
• Contact a social worker or patient navigator at your healthcare facility.
• Call the Eldercare Locator at 800.677.6116 and request this information.

When choosing a pet, consider your lifestyle, health condition and cost of purchasing and maintaining the pet.

There are steps to take to keep your pet healthy - and to keep you from getting an unnecessary infection from your pet.

It is advisable to make arrangements have your pet cared for if you are unable to temporarily or permanently.

AMERICAN CANCER SOCIETY, 1599 Clifton Road, N.E., Atlanta, GA 30329, www.cancer.org or Tel. 800 ACS 2345. Publications and information; referrals, research, education and advocacy. 

BREASTCANCER.ORG, information about Breast Cancer.

CANCER CARE, INC., 275 Seventh Avenue, New York, New York 10001, www.CancerCare.org or Tel. 800 813 HOPE. Free professional counseling, support groups, education, condition and treatment information, referrals.

CANCER SUPPORT COMMUNITY, (formerly The Wellness Community and Gilda's Club Worldwide) 919 18th Street NW, Washington, D.C. 20006, www.TheWellnessCommunity.org or Tel. 888 793-WELL. Psychological and emotional support for survivors and families.

DREAM FOUNDATION, 1528 Chapala Street, Ste 304, Santa Barbara, CA 93101, www.dreamfoundation.org or Tel. 805.564.2131. Grants wishes to terminally ill adults.

NATIONAL BREAST CANCER COALITION, 1101 17th Street NW, Suite 1300, Washington, DC 20036, www.natlbcc.org or www.stopbreastcancer.org , tel. 800 622 2838. Grassroots advocacy to eliminate breast cancer.

NATIONAL BREAST CANCER FOUNDATION, INC., 2600 Network Blvd., Suite 300, Frisco, TX 75034, www.NationalBreastCancer.org , information and support

NATIONAL COALITION FOR CANCER SURVIVORSHIP, 1010 Wayne Avenue, Silver Spring, MD 20910, or Tel. 301 650 9127 or 888 656 9127. A resource network linking cancer survivors nationwide to the support resources in their communities. Publishes National Directory of Cancer Support Services.

RA BLOCH CANCER FOUNDATION, One H & R Bloch Way, Kansas City, MO 64015, www.BlochCancer.org , or Tel. 800.433.0464 or 816.854.5050. Matches newly diagnosed cancer patients with others who have survived the same kind of cancer. Free information.

SHARE (Self Help For Women with Breast or Ovarian Cancer), 1501 Broadway, Suite 704A, New York, NY 10036, www.ShareCancerSupport.org , Tel. 866.891.2392 or 212.719. 0364. Condition and treatment information, support groups of and for women with breast and ovarian cancer.

SUSAN G. KOMEN FOR THE CURE, 5005 LBJ Freeway, Suite 250, Dallas, TX 75244, www.komen.org , Tel. 800 465 6636 (800 GO-KOMEN). Research, education, help line.

Y-ME NATIONAL ORGANIZATION FOR BREAST CANCER INFORMATION AND SUPPORT, 212 W. Van Buren, Suite 1000, Chicago, IL 60607-3903. www.yme.org , Tel: 800 221 2141 or 312 986 8338. Peer support. Manual for starting support groups. Prosthesis bank for women with financial need.

If there is more than one hospital near you, in a medical emergency, an ambulance will take you to the nearest hospital. It's possible to ask that you be taken to another hospital unless you are experiencing a real emergency and are unstable.

It is advisable to take the time now to think about which hospital you would prefer "just in case." For example, if an emergency does, or could, relate to your health condition, it may be preferable to go to a hospital in which your preferred doctor can work (has "privileges.")  Ask your doctor what emergency room in your area he or she considers the best.

If you need hospital care beyond the emergency room, once you are stable, you can transfer from the hospital to which you were taken to the hospital you prefer.

Also, keep handy the names and contact phone numbers for:

• Your primary care doctor and specialist (their calling ahead to the ER will make your visit better).
• The person who is named as your Proxy in your Health Care Power of Attorney.
• Close loved ones.
• Your insurance company if pre-authorization is required. Generally pre-authorization is not required for emergency service. However, it's preferred to call if you can to avoid later potential hassles about payment.

Keep a bag packed with:

• A copy of your Living Will, Health Care Power Of Attorney and/or Do Not Rescuscitate Order if you have one.
• Insurance information.
• A few days supply of your current medicines as well as a list which describes:
  • Each of the drugs.
  • Dosage.
  • When you're supposed to take which drug.
  • Special instructions (such as do not take with food).

If you do not have extra drugs to pack, at least keep all your medicines in one place so it's easy for someone to find them and bring them to you in the hospital.

A few tips about waiting:

Doctor's office

• Before you go, call to find out if the doctor is running behind, and if so, how long. Let the staff know you'll show up closer to when the doctor is ready to see you.
• If you have a choice, be the first appointment of the day or in the afternoon after a lunch break. Doctors are less likely to be running behind at that point.
• While waiting, review your Health Diary, summarize what's happened since your last appointment and prepare your questions. Take something to read or do if you're already prepared -- or if you have to wait even longer. Talkng on mobile phones disturb the other people in the waiting room.
• Ask if the office has wi-fi for your mobile devices.
• If the waits for a doctor become intolerable, it is a good reason to change doctors. There are concierge practices where you pay extra out-of-pocket to see a doctor, but you are guaranteed minimal or no wait.

For appointments or test results

• Keep yourself as busy as you can with positive, mind-absorbing tasks, so you don't think about it.
• If you start to feel fear, recognize it for the thought that it is. It is not reality. Use it as a trigger to think of something else -- something pleasant - including family outings or trips. .
• Follow up to see if there was an appointment cancellation, or the test results are back sooner.

Emergency Rooms

If there's a long wait in an ER, and you feel you need to be treated right away, go home and call 911. You may end up having to pay for the ambulance, but you'll be alive.

If approved drugs and treatments are not doing a satisfactory job, clinical trials should be considered as a source of drugs or treatments that could work. Your health care team is a good source of information about your options with respect to clinical trials.

Keep in mind that while you may be looking to a particular drug as a treatment, the safety and effectiveness of the drug have not yet been proved. That's what the clinical trial is for.

Informed consent is a concept that is important to all decisions you make, particularly about what treatments you undergo and what drugs you take. With a clinical trial, informed consent is even more important because:

• The risks are higher since less is scientifically known about the drug.
• You may not get any drug at all in some trials in which part of the group is given a placebo (basically a sugar pill) and the study is "blinded." "Blinded" means that you won't know if you're getting the drug until the trial is over.

Read all the literature which explains what the drug is supposed to do, what is known about it, and what the known risks are.

If you do enter into a clinical trial:

• Ask questions. For example, how often during the trial will you need to see your own doctor? If the drug works for you, what happens after the trial ends? Will you continue to have access to it?
• How much of your medical care will the clinical trial pay for? If there is any amount for you to pay, health insurance generally pays for routine medical care.
• Don't sign the consent form until you are satisfied that you know everything that a prudent person would wish to know.

You have the right to drop out of a study at any time, for any reason. This right may not be helpful if you aren't given ongoing results during the trial. Sometimes people in the trial don't learn about whatever markers are used to see if the drug is working until after the test is over.