I have Breast Cancer...It doesn't have me!

"You have breast cancer". Those were the words that changed my life at 5:30 p.m. on a Friday evening over 5 years ago. After having a bilateral mastectomy, 6 rounds of chemotherapy and taking tamoxifen, I thought I was done! Free of the beast forever...but then a back ache that wouldn't go away (less than a year after finishing chemotherapy), led me to the doctor for an x-ray. "Your breast cancer has spread to your spine", were the words that freaked me out, led to a few panic attacks (which I had never had) and led me to believe my life was over. BUT, for me, and many other women, getting diagnosed with metastatic breast cancer isn't a death sentence. Because of strides that have been made through clinical trials, my cancer is treated as a chronic disease. I am constantly having a treatment of some sort, and I am blessed that there are new medications and discoveries being made to keep my cancer at bay and to knock it down when it flairs up!

When you are first diagnosed with breast cancer, it is a diagnosis which changes your life, and you will go through so many feelings and changes, some predictable and known, and some completely unpredictable for the foreseeable future. On top of that, you have to manage your own devastating diagnosis. You don't have any control when you get the call that you have cancer, but there are things you can to help you maintain some semblance of order. I found that one of the things that helped me in the beginning was to get a 3 ring binder to keep papers, notes, appointments, contacts etc. all in one place. (My three ring binder has turned into a portable filing box though!) This helps because your memory, organizational style & thought processes can become jumbled from the stress.

Three Ring Binder

A three ring binder will ensure that you are able to keep pertinent information in one place, and provide copies of important documents at a moment's notice. You will also be able to easily keep track of appointments, contact information, questions and answers

Purchase either a 2" or 3" binder, some come with a zipper around the binder to ensure safe-keeping of binder contents. Suggested contents:

• Divider sections which have pockets for you to place pamphlets.
• Notebook paper for note taking
• Pen, pencil, highlighter
• Sticky notes
• Three-hole punch made for a three ring binder
• Suggested sections for the binder:
• Treatment schedule/Calendar:

Many times IV's, chemo, physical therapy, oncologist visits and other medical events happen on a regular basis. Write them down and avoid confusion, missed appointments and frustration.

Phone list:

• For each doctor: record the receptionist, nurse, fax and doctor's direct telephone number, address
• Hospital: admitting, ER, cancer ward, key contacts (accounting, patient services, counseling)
• Insurance company: 800 number, member services, fax number
• Family and Friends: Home & work telephone numbers, addresses
• Emergency numbers: who they are & why they should be called
• Druggist: pharmacy number, fax number

Medicines:

You will routinely be asked what medications you are taking; it is helpful to have the following information:

• List of all current medicines: dosage, prescribing doctor, date started. Use this list to set up each day's supply of medicines. This list will also be helpful should a doctor change the prescription.
• List of discontinued medicines: when stopped and why
• List of medicines, foods or other items to which you are allergic
• Package inserts or drug description handouts from the pharmacist - these can be kept in the binder divider pockets

Questions and Answers:

It will be helpful to have any notes you take and questions you have in one place for referral. Some people find that compiling questions and notes on the computer is helpful; having sheets of notebook paper in this section will allow you to write when you are in the doctor's office, or when any thought strikes you.

• Scans, Tests and Reports:
• Copy of each monthly or weekly blood test
• Summary record of pertinent blood test values for your specific condition - this is sometimes included with the blood test results
• Copy of reports and notes for: doctor's notes; ultrasounds; mammograms; biopsies; PET Scans; CAT Scan; bone scans; MRIs; X-rays, etc. You can ask your doctor or your doctor's nurse for a copy of every test and scan performed.

Know how to obtain the original films from scans and x-rays, as well as any original slides from all surgical procedures (including biopsies, lumpectomies, and mastectomies.)

Personal data:

• Weight, blood type, blood pressure, pulse, temperature logs - as needed
• Hospitalizations:
• Record of hospital visits, surgeries, transfusions, etc. Include date, type of treatment, results and other pertinent information.
• Unusual conditions:
• Prior or unrelated events (seizures, vision, nausea, dizziness, etc.). You will want to provide this information to your surgeon, oncologist, and/or radiologist.

Current Symptoms:

Current concerns or symptoms on an as-needed basis. Sometimes simply a list of questions for the doctor, sometimes a daily journal of what is happening each day. Try to be specific in your descriptions - instead of 'felt feverish' write down your actual temperature. Instead of 'felt discomfort in my chest' try to quantify it for you and the doctor. If 10 is the worst pain you ever felt and 1 is like a pin prick - then use that scale to record your discomfort or pain.

Second Opinions:

You may pursue a second opinion. You can keep contact information here, and if it becomes too cumbersome, you may want a separate binder. Keep in mind: if you pursue a second opinion, you will be asked for a separate set of tests, scans, reports, and doctor notes. See the section regarding Second Opinions on our webpage: faithhopecourage.com.

You may find that there are friends who step up to the plate and help you out, some may not feel comfortable and fade into the background. They will all have their own personal reaction, and you can't take it personally. You may want to find additional forms of support, a couple are listed below.

Forms of Support:

A Diary

This can be kept in the 3 ring binder, in a separate diary, a spiral notebook, or even on the computer. Some people enjoy writing and some typing on the computer makes the flow easier. It can be centering and helpful, especially in the beginning of this process, to write down how you feel, what happened daily....your ups and downs. Sometimes just writing things down helps to resolve issues, and can give you encouragement and inspiration.

Support Groups

There are many forms of support. You can find it online at places such as breastcancer.org. Also I have other online resources listed on our website: http://www.faithhopecourage.com/. You may also obtain names and addresses from your surgeon, oncologist, radiologist, local cancer resource agencies, your local hospital, and/or other cancer patients.