Suggestions for Survivors

Even with early detection, a diagnosis of breast cancer is devastating news. How does one face a life-threatening illness with the positive attitude that has proven to help speed recovery and survival?

The diagnosis of breast cancer means addressing serious questions about treatment options. It also means taking action that allows you to focus on personal healing while home, family and career become secondary.

When I was diagnosed with breast cancer in 1996, I knew very little about the subject. I knew a handful of people who had survived, or died, from breast cancer. But the details escaped me. My doctor told me I had invasive ductal carcinoma. When I repeated that diagnosis to a specialist, I didn't even remember whether it was carcinoma or melanoma. Both are ugly words, and I didn't want either one.

The diagnosis made me feel inferior, flawed, and helpless. I felt incapable of functioning as a mother, wife, or business executive when I didn't even have control of my body. The months of treatment ahead seemed overwhelming until I began to take charge of my own attitude and my own care.

If you receive the same devastating diagnosis, don't hesitate--take charge. Being in charge puts you on the road to recovery. Here are some tips to help you face the road ahead.

• Learn as much as you can about your type of breast cancer and the treatment options.

  Soon after hearing of my diagnosis, I received Dr. Susan Love's Breast Book. It covers everything from A to Z about breast cancer and the options for treatment. It is written in a very readable style, taking the mystery out of the medical terminology that surrounds breast cancer.

  Contact your local American Cancer Society. Get their brochures and ask for a visit by a Reach to Recovery volunteer. This volunteer is a breast cancer survivor. Along with an assortment of American Cancer Society reading materials, she will also bring you a temporary prosthesis if you had a mastectomy without reconstruction. If your doctor approves, she will show you arm and shoulder exercises that will help you recover strength and mobility in your arm and shoulder.
  
  

• Interview your doctors and make your own decisions.

  Depending on your diagnosis, you will have different decisions to make. My decisions were numerous. Could they get all the cancer with a lumpectomy or should they do a mastectomy, taking the whole breast? If I chose the mastectomy, did I want reconstruction or not? If I wanted reconstruction, would it be artificial implants or a flap of muscle from my stomach or shoulder? Did I need to have radiation, chemotherapy, pills, or a combination of these treatments? All of these choices are very personal. Be informed and make the decision for your reasons, not what you think your doctor wants. You have the rest of your life to spend with yourself and your loved ones. Your doctors are important right now, but you will not be spending the rest of your life with them. Don't make hasty decisions. Take your time and consider your own lifestyle and future happiness, keeping in mind that no option is carefree. Look into the future maintenance requirements for each of the options you are facing
  
  

• Build your own support group.

  If a breast cancer support group is available, try it. I learned more about living with breast cancer from other survivors than from medical professionals. Survivors know about wigs, prostheses, and side effects of treatments. Survivors can explain what clothes will work if you have a mastectomy without reconstruction, or what future care is required if you have reconstruction. Equally important, survivors talk about how you feel as the months go on and you realize you must live as a breast cancer survivor with all the accompanying fears and hopes.

  If there is no organized breast cancer support group available, build your own support group of family and friends. Talk to them about what is happening to you and how you feel. I formed an e-mail support group of over 100 people, some of whom I have never met. Friends of friends joined my e-mail group, many of them breast cancer survivors who helped me by telling their own experiences. Friends who lived far away were able to offer support, love and prayers by communicating often over e-mail.
  
  

• Tell people what you need.

  Often friends would say to me, "Let me know what I can do for you." I felt uncomfortable telling them what I needed. I learned that it actually helped them feel better if they could help me. So, be prepared to tell your friends what you need: shopping, driving you to treatments, picking up your child from an activity, bringing a meal, or coming to walk with you or visit with you. Keep your list near the telephone so you are ready to say what it is that you need that day. If there is nothing specific you need, then assure your friends that the best thing they can do for you is pray for your recovery. Prayers are the most someone can do for you, not the least.
  
  

• Spend time with people in pleasant places.

  Although my doctor asked me to avoid crowds and places with children during the many weeks of chemotherapy treatments, I did not have to be alone. When I was alone too much, I felt very isolated and lonely. It is very important to be with others, to do "normal" things, and to be socially involved. Isolating yourself can cause depression which impedes healing. If you can't get out, then ask people to visit you. When my blood counts were very low, I wore a surgical mask. Friends won't mind wearing a mask if they can visit you and cheer you up.

  When my counts were higher, my husband would take me on wonderful trips to old favorite places and exciting new places, making sure not to overdo. Despite the precautions, it gave us a happy time in the midst of battling the cancer.
  
  

• Find reasons to laugh.

  A positive attitude is a tremendous asset in healing. Friends supported my efforts at humor by sending e-mail jokes and funny stories, so I had several laughs a day. My e-mail support group held contests for the top ten reasons to have cancer or to be bald. My favorite response, from a bald male friend, was, "If you think your hair is more important than your brains, it probably is."

  At home, my daughters and I watched old home movies together. We enjoyed great belly laughs as we watched the antics of the three girls when they were little.
  
  

• If you are having chemotherapy, cut your hair first.

  There is a big psychological advantage to cutting your hair rather than losing it down the drain. There are several practical reasons to cut your hair very short before having chemotherapy. First, losing your hair is very messy. It comes out over a period of days or weeks and gets on everything. Shower drains, pillow cases, and washing machines are full of hair. The shorter you cut it, the less mess.

  Secondly, if you cut your hair off before it begins to fall out, then you are in charge. No one takes it from you. You decide when you lose it (up until about the first two weeks after your first chemotherapy session), so you feel as though you have beaten the "system." Third, trying on wigs is a lot easier without a full head of hair. I bought a wig before I cut my hair off and tried to replicate my midlength style. What a disaster. I never wore the wig even after spending too much money on it. My success with wigs came when I ordered several synthetic wigs from a catalogue that allowed returns. I was able to try them on in the privacy of my own home and decide what would work best for me, then return the ones I didn't want. I found that the synthetic wigs looked absolutely natural and were totally carefree.
  
  

• Exercise your affected arm and your whole body.

  Daily exercise will help you have more energy even when treatments may drag you down. Continue any exercise regimen you did before cancer, or begin walking daily to get out and keep active. I found myself getting too lethargic when I didn't get out and walk.

  Arm exercises are vitally important if you have a lymph node dissection. While it hurts to stretch those arm muscles and move that shoulder, the movement helps prevent more painful conditions later on, such as a frozen shoulder or swelling called lymphedema. The American Cancer Society Reach to Recovery volunteers are trained to demonstrate particular arm and shoulder exercises that are beneficial for recovering full motion in your arm and shoulder. However, do not start the exercises until your doctor agrees you are ready.
  
  

• Take stress out of your life.

  This is a time to concentrate on getting well. Say "no" to all those nonessential tasks. For once in your life, put yourself first and be a bit selfish. Let a colleague take the business trip, or do it by teleconference. Ask someone who wants to help to bake those brownies for the school's bake sale, or just buy them. Do only those things that nurture your body and soul. You need to focus all your energy on healing. The healing process from a life-threatening disease is as much mental as physical. Look at various work options. Consider working from home at your own pace. During periods of extended treatment and recovery, look at the possibility of going on disability. This was my choice, although I have many friends who have worked through periods of extended treatment. Consider what are your job demands and whether you are being fair to both yourself and your employer. You will not be as productive on the job during treatment. You will heal faster if you focus on yourself first.
  
  

• Pamper yourself.

  Let's face it, it is hard to feel beautiful with scars, a missing breast, radiation burns, or baldness. Spend time pampering yourself as often as possible. Get a weekly massage. Get regular manicures or pedicures. Go to a make-up specialist and learn how to change your make-up when you lose your eyelashes and eyebrows. The American Cancer Society's Look Good...Feel Better program offers free consultations.

  If you don't have time, energy or money for professional treatments, take long baths. Use nice bath oil or bubble bath and make yourself feel special. It is relaxing and invigorating, giving you more energy to focus on your own heeling.

  Triumphing over breast cancer is a goal for all women and men who suffer from this disease. Our friends and families can support this goal by traversing this lonely path with us. Studies have shown that breast cancer patients with supportive families and friends do better in their treatment. Let's join together to triumph-and to find a cure for breast cancer.