Breast Cancer

Lesson 2: Diagnosis, Tests & Staging

What You Really Need To Know

If you, or someone you know, has just been diagnosed with breast cancer, your mind is probably in overdrive. Take a deep breath, try to relax and realize that although you have some tough decisions to make, you do have time - time to do your homework. Find the doctors who are the best fit for you, exam your treatment choices. Do what is right for YOU. (This will be my mantra throughout this course.)

The National Breast Cancer Coalition Fund has just published "Guide to Quality Breast Cancer Care". NBCC believes that quality breast care is based on 6 steps: access, information, choice, respect, accountability and improvement. I will try to summarize this book for you.

Access includes finding a way to pay for your care, either through insurance, governmental help, a health plan or other means. No one should be denied care based on their ability to pay. Access also includes information in your native language, if necessary. Acknowledgement of any special needs you have and successful handling of these needs. Access also includes getting time off from work for your care, getting help with your family or housework and a means of getting in touch with your doctors. Quality breast cancer care must be affordable and comprehensive.

Information includes understanding your diagnosis and getting info based on real evidence. Keep asking questions until you understand and are comfortable with the terminology. Do other terms mean the same thing? Get a copy of your pathology report. Learn about staging (includes tumor size, # of positive lymph nodes, spread to other locations). Is the cancer estrogen positive? Is it Her-2/new positive? Dr. Susan Love's Breast Book remains the best overall comprehensive book on breast cancer. When the doctors give you your treatment choices, the information should be easy to understand, up to date and have evidence to back up the choices. Keep asking until you get it all down pat. Get a second opinion. Make informed choices, based on your needs and preferences.

Choice means that you should be able to pick your doctors and be part of the team making decisions about your healthcare. Are you comfortable with the doctor? Does s/he offer educational materials? Who are the other doctors who will be involved in your care? Do they work as a team? Will you be part of this decision-making team? Make decisions you are comfortable with. Your quality of life is important. It is up to you to relate your needs/concerns to your doctors and make them explain everything to you in detail, if that is what you want.

Respect is important in every aspect of life, but no more so than when you are a patient. You should be respected as a patient, ensured that your medical history will be protected and treated as a person, not just a patient. Give respect and you will get respect. Bring a family member or trusted friend or patient advocate with you to meet the doctors. Think of the meetings as two people, not a specialist and a patient. Ask about confidentiality. Does your doctor/team include surgery, chemotherapy, radiation, reconstructive, hormonal therapy, clinical trials, pain management, physical therapy and mental health service? You hopefully will not need all of the above, but it is sure nice to know that they are available.

Accountability means that the doctors, the insurance company, and you, the patient, do what is required. Is the doctor Board-certified? How is your health plan rated? What will your plan pay for? You can always appeal the plan's decisions and go to court if necessary. You also have to be responsible. Give the correct information, be respectful, ask for clarification when you are unsure of the words or procedure and do what you are supposed to do. Be honest, have respect and make yourself part of the team.

Improvement is always needed in all venues. You can help yourself, and others, by getting involved - be a buddy to another patient, push for better/greater care for all women, be pro-active for research funding, raise funds, spread the word, be yourself! Quality care includes making progress, learning from your care and deciding what really matters.

This is just a short synopsis of NBCC's quality care guidelines - I have merely skimmed the surface.

http://www.canceradvocacy.org (National Coalition for Cancer Survivorship)

http://imaginis.com/breasthealth/menu-di...

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