Getting Comprehensive Care

Breast cancer patients need a wide range of services. Sometimes it's hard to know if you've gotten all the care you need. Everyone needs:

You may also need:

Women with end-stage breast cancer may also need:

  • help with symptoms caused by their disease or treatments,
  • household help and child care,
  • emotional and practical support for the caregiver and other family members, including children,
  • hospice care,
  • family counseling, and
  • help with advance directives.

All of this care needs to be coordinated. That means that all of your doctors and nurses talk to each other. It also means that one person:

  • manages all parts of your care and recovery,
  • keeps track of your overall health, and
  • keeps track of the care you get from different doctors and nurses.

What's more, your care should be timely. That means you should get the care you need when you need it. Waiting two weeks to get a lump checked may not affect the course of your disease. But you shouldn't have to wait so long and live with the worry.

You should get the same care whether you live in a big city, a small town, or a remote village. But studies have shown that where you live does affect the quality of your care. For example, people living in cities often get different care than those in rural areas.4

What You Can Do:

Learn about the standard of care for breast cancer.

There are breast cancer treatment guidelines based on medical evidence. These guidelines say what treatments are most likely to help breast cancer patients. Most doctors agree about most of the guidelines. The guidelines make up a standard of care for breast cancer. You should read these so you'll know what to expect and what kind of care you deserve. Click here for more information about guidelines.

Think about joining a clinical trial.

If your doctor did not tell you about clinical trials, you are not alone. A study found that only about 38% of patients are offered a clinical trial by their doctors. Doctors may not offer information on clinical trials to their patients because of concerns that the control group treatment may not be adequate.5

Studies show that breast cancer patients who take part in clinical trials tend to do better than patients who do not.6 This may be because most patients are given good care and follow-up in a clinical trial. They get good care no matter which treatment they get. Ask your doctor about clinical trials.

What are clinical trials?

Think about traveling to a bigger care center.

Try to get care somewhere that treats a lot of women each year for breast cancer. Studies have shown the following:

  • breast cancer patients tend to get better care at larger hospitals.7
  • breast cancer patients do better with surgeons who see more than 30-50 new cases each year.8 (Ask your doctor's office how many breast cancer patients they treat each year.)
  • Patients treated by breast cancer specialists tend to do better than patients whose surgeons are not breast cancer specialists.9

It's important to see an experienced doctor who has done what you need many times. For reconstructive surgery, your plastic surgeon should offer you "before-and-after" photos. That way you can see what to expect from the surgery.

Ask about tele-medicine. With access to the Internet, both doctors and patients can get up-to-date information on how to treat breast cancer. And now doctors across the country can consult each other over the phone and Internet. Ask your doctors if they consult with cancer specialists. If your doctor doesn't want to, maybe you should find one who will.

Know your rights as a breast cancer patient.

Congress passed a law that makes most health plans and health insurance companies cover certain parts of breast cancer care. The law is called "The Women's Health and Cancer Rights Act of 1998." For example, one treatment for breast cancer is to remove the breast. This is called a "mastectomy." Reconstructive surgery is a kind of plastic surgery that rebuilds the breast. Federal law says that health plans and insurance companies must cover reconstructive surgery if they cover a mastectomy. And they must cover surgery on the healthy breast to make both breasts the same size and shape. The law also says that they must pay for breast prostheses and treatment of lymphedema, which is the swelling of the arm that sometimes happens after lymph node removal.

Sometimes states have better laws than the federal government about breast cancer care. To find out if your state has passed breast cancer laws, contact the National Conference of State Legislatures (NCSL). Or contact your state health department. The phone number should be in the government pages of your phone book.

If you think you were turned down for care unfairly, you can appeal. This means that you ask your health plan to review your care request again. Appealing works best when you can back your appeal with proof that you need the care. Care that you need is called "medically necessary" care. Contact your health plan to find out how to appeal a decision the plan made. Click here for more information on how to file an appeal.

Ask about coordination of care.

It is important that one person keep track of all your medical issues. This is called "coordination of care." Ask about this when you choose a team of doctors and a place to get your care. Ask:

  • Who is in charge of my care?
  • How does he or she share information with my other doctors and nurses?
  • How is my case reviewed and by whom?
  • Whom do I call when I have questions?
  • Can I get a care plan in writing? Will it have information such as test results, care instructions, appointments, and medicine instructions?

Some doctors and nurses really do coordinate care. So look for this service if you have any choice about where you get your care.

Patient Navigators

4. Schootman M, Aft R. Rural-urban differences in radiation therapy forductal carcinoma in-situ of the breast. Breast Cancer Res Treat 2001 Jul; 68(2): 117-25.

Ayanian JZ, Guadagnoli E. Variations in breast cancer treatment by patient and provider characteristics. Breast Cancer Res Treat 1996; 40(1): 65-74.

Howe HL, Johnson TP, Lehnherr M, Warnecke RB, Katterhagen JG, Ford L. Patterns of breast cancer treatment: a comparison of a rural population with an urban population and a community clinical oncology program sample. Cancer Control 1995 Mar; 2(2): 113-20.

5. Siminoff L, Zhang A, Colabianchi N, Sturm CM, Shen Q. Factors that predict the referral of breast cancer patients onto clinical trials by their surgeons and medical oncologists. J Clin Oncol 2000; 18(6): 1203-11.

Melisko ME, Hassin F, Metzroth L, et al. Patient and physician attitudes toward breast cancer clinical trials: developing interventions based on understanding barriers. Clin Breast Cancer 2005 Apr; 6(1): 45-54.

6. Gnant M. Impact of participation in randomized clinical trials on survival of women with early-stage breast cancer: an analysis of 7985 patients. Proc ASCO 2000; 19 (Abstract 287).

Hebert-Croteau N, Brisson J, Lemaire J, Latreille J. The benefit of participating to clinical research. Breast Cancer Res Treat 2005 Jun; 91(3): 279-81.

7. Roohan PJ, Bickell NA, Baptiste MS, Therriault GD, Ferrara EP, Siu AL. Hospital volume differences and five-year survival from breast cancer. Am J Public Health 1998; 88(3): 454-57.

Ayanian JZ, Guadagnoli E. Variations in breast cancer treatment by patient and provider characteristics. Breast Cancer Res Treat 1996; 40(1): 65-74.

8. Stefoski Mikeljevic J, Haward RA, Johnston C, Sainsbury R, Forman D. Surgeon workload and survival from breast cancer. Br J Cancer 2003 Aug 4; 89(3): 487-91.

Richards M, Sainsbury R, Kerr D. Inequalities in breast cancer care and outcomes. Br J Cancer 1997; 76(5): 634-8.

9. Skinner KA, Helsper JT, Deapen D, Ye W, Sposto R. Breast cancer: do specialists make a difference? Ann Surg Oncol 2003 Jul; 10(6): 606-15.

Gillis CR, Hole DJ. Survival outcome of care by specialist surgeons in breast cancer: a study of 3786 patients in the west of Scotland. BMJ 1996; 312(7024): 145-48.

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2001, 2002, 2006 National Breast Cancer Coalition Fund
Last reviewed: March 2006