Stem Cell Transplant:
A Companion Guide for Breast Cancer Patients
Coping with Feelings
Emotional Preparation for Transplant
Coping Strategies During and After Transplant
Relationships and Outlook
Coping with Other Issues
Emotional Preparation for Transplant
Facing breast cancer and a stem cell transplant is, without question, difficult. During the stem cell transplant process, medical concerns are likely to take precedence. But your emotional needs should not be minimized. You will probably experience strong emotions ranging from anger, fear, panic, dread, and helplessness. If you have recently had a mastectomy, the prospect of a stem cell transplant may demand more of you emotionally. At times you may feel emotionally numb. Expect these moments. There'll be days when you'll want to face the prospect of a transplant alone. It is a personal issue in many ways. More often, family and friends will be there to share your concerns and listen to your needs. Coping will occur in a variety of ways.
One immediate coping style is to gather medical information. This is a common and expected response, but it may leave you feeling overwhelmed and confused. It can be exhausting. If you were recently diagnosed with breast cancer, you may find yourself researching both the disease and the stem cell transplant process. Focus on the most current information possible. Get organized. Gathering information can help regain a sense of control. Ask friends or family to help sort out information.
You may experience resentment towards others. They don't have this "issue" hanging over them. It is normal to be angry and questioning. Try to sort out emotions like these and recognize them. Rely on your communications skills. Let people close to you know what you are feeling. Don't bottle up your emotions. Give yourself permission to express all your emotions. Be understanding and gentle with yourself. Ask your family and friends to do the same. You may also benefit from private counseling.
Another factor to consider is your age. At the present time, the average age for women having this procedure is in the late 30s. If you are young, some issues may be different for you. Body image and fertility questions may be high on your list of concerns.
Think back to how you coped with things in the past. What skills got you through? Rely on those positive skills again. Remember that you are more than a "cancer patient." Let your other life roles and uniqueness help emotionally support you.
Go with your strengths. Your ability to cope will be affected by your own life experiences. Trust that you can do it. Let others help by forming a "circle of support" around you. If, however, you find yourself feeling helpless or guilty much of the time, seek advice from a trained medical counselor. A support group may also prove beneficial. Your medical center will make recommendations.
Try the following suggestions that may help prepare you emotionally for the transplant:
- Read about the experience.
- Contact breast cancer survivors who have had stem cell transplants.
- Focus on success stories. Make a book of "good news" and refer to it often.
- Learn stress management skills. Try muscle relaxation, yoga, breathing techniques, imagery, visualization, meditation, or others.
- Keep your routine as normal as possible.
- Make a plan to delegate tasks to others. Get things in order.
- Take time for yourself.
- If a spiritual life is important to you, meet with a religious counselor.
- Develop support teams, i.e., family, friends, other women, medical team.
- Have a creative outlet like writing in a journal, painting, crafts, etc.
- Participate in activities that you enjoy.
- Seek outside counseling for yourself and your family, if needed.
The expression "attitude is everything" applies in this circumstance. The way you view the transplant will definitely influence your emotions. It may be a love-hate scenario. Maybe you actually can't wait to begin treatments. You understand that you'll feel sick but at least you're actively fighting your breast cancer! The transplant represents a challenge! It's your chance for a new lease on life.
You can expect fluctuations in your moods. There will be highly emotional moments. There will be times of relative calm. Each is part of the transplant experience. You may take an active role in the process, choose to hand over controls to others or do some combination of the two. Do whatever feels most comfortable to you.
Coping Strategies During and After Transplant
You may find the transplant experience emotionally difficult. It may be easier than you expected. By the time you are facing a stem cell transplant, you already may have dealt with physical changes such as a mastectomy and/or reconstruction. Issues surrounding body image may become secondary to fears of recurrence and spreading cancer. Maybe you have lost your hair before, dealt with those kinds of things and moved beyond it. Issues such as losing some of one's privacy, adapting physically, or being away from home, may affect you differently depending on past experience. If you are newly diagnosed you are being asked to cope with cancer and transplant at once. This will require a different game plan. It is a major life disruption that comes with tremendous stress.
Take it one day at a time. Much of what you are feeling will be temporary. Daily medications may affect your mood. Sleep loss is a common problem that could affect your mood. Forgive yourself if you lash out at those closest to you. They'll understand. Coping positively with breast cancer and stem cell transplant is largely based on your attitude and the taking one day at a time view. While your breast cancer may not have been in your control, your treatment attitude is. Attitude is an important aspect of the experience. Every morning you have a choice of what attitude you will embrace for the day. You are 100 percent in charge of that!
Some suggestions to guide you through are:
- Express your needs. Be assertive. Be specific. Communicate, communicate, communicate. Don't assume that something obvious to you will be clear to others. Let people know what kind of food you want, what kind of care you'd like, what schedule is best for you. Find out what options or services are available. It never hurts to ask. Let your medical team know how you cope best with information. Do you prefer all information up front or as needed?
- Keep your sense of humor. Rent some funny movies. Make jokes. Enjoy the company of others. Laughter can be a powerful ally.
- Set realistic goals for yourself. Don't expect to bounce back immediately. Transplant is an energy-draining experience. Be kind to yourself.
- Cherish and appreciate the support you receive from family and friends. This can be the single most important factor in predicting how well you will cope. They will have the need to do things to help you. Let them. It will decrease their feelings of helplessness.
- Have someone check up on the emotional well-being of family members too. A comment like "how are you holding up?" should be directed toward caregivers often. This kind of nurturing is good for you and for those who care for you.
- Ask about services like BMT support groups and/or breast cancer support groups. Talk to social workers at the transplant center to discover what is available.
- If you have computer skills, check out the online BMT support groups (see Resource Listing).
- Speak with your clergy, if this gives you additional support and strength.
- Read books with positive affirmative messages.
- Use diversions like soothing music or a new hobby.
If you are from a rural community or have chosen a transplant center far from home you may feel somewhat isolated. You may have concerns surrounding childcare or other family issues. Rely on the social work staff at the treatment center. There are people to help you through this experience.
Given the dramatic nature of a stem cell transplant, it is reasonable to expect emotional reactions and feelings to be greatly heightened. It may help to identify some of the most common responses.
Fear and Anxiety
You wouldn't be normal if you didn't experience some fear and anxiety regarding your stem cell transplant. It can be scary. Sometimes the fear goes beyond the transplant itself. You may be anxious about how your family will cope, time away from work or issues like inadequate insurance coverage. Recognize when anxiety appears. Signs would include the inability to sleep, difficulty focusing at work, or having trouble understanding what your physician tells you. Talk about your fears with your physician, family, and friends. Communicating how you feel may provide some relief.
You may have bouts of feeling deeply sad and tearful. A cancer diagnosis can naturally have that effect. Depression occurs when there is a severe and enduring state of extreme sadness, negative thinking, and changes in eating or sleeping. There is a tendency to become isolated and withdrawn from others. This vicious cycle can lead to loneliness and greater depression. If you have had a history of depression or have taken medication for "nerves," be sure to inform your doctor.
The episodes of feeling depressed can usually be worked through. If you come to feel that others are very concerned about your deep sadness, or that life is not worth living, it's time to get help from a professional therapist. Certain medications may also produce symptoms of depression. Discuss this with your physician or transplant team.
If children or family members are left at home while you're having your stem cell transplant, there may be additional worry and guilt. It is natural that you be concerned about their well-being in your absence. If you've been the primary family caregiver, you may feel guilty about the role-reversal you're experiencing as a patient. Now your family is taking care of you. Another aspect to cancer-induced guilt is during the recovery period. Recovery is not totally under your control. You may feel guilty if your recovery takes a turn that is unexpected and temporarily disappointing. Take credit for your treatment successes but do not take on guilt if progress slows. Be patient and allow your family to offer this support.
"Why me?" You've probably said words like this in response to your breast cancer diagnosis. It can reflect anger or sadness. Short tempers, family disputes, and problems working with the medical system or insurance companies can all contribute to the anger you may feel. You may initially feel angry at being "caught up" in this entire experience.
You may get frustrated when medical information is not easily available. Do not suppress these angry feelings. Recognize them and decide how you want to confront them. Talk it out, yell, use the "punch-something" method, or whatever will free you from the anger. Release it. Try to direct this energy toward healing and recovery.
There is an enormous amount of stress on you, your caregiver and your family at this time. You're all being challenged in different ways by a traumatic illness and procedure. Each of you is struggling with the physical, emotional, and perhaps, financial issues surrounding this treatment. It is a huge life disruption. If you must make a quick decision about transplant due to the condition of your breast cancer, stress will naturally be magnified. Any time there is change, stress results. Don't wait for the stress to become unbearable; learn how to manage stress early. Try to handle one thing at a time. Allow others to offer support.
Relationships and Outlook
A healing environment is created when one person cares for another. Whether it's your family, caregiver, friends, nurses, or others, the nurturing relationships that are built will serve you well - before, during, and after your transplant. Much of this caregiving will be invisible, happening quietly. For you, the patient, this support will be invaluable, positively affecting your outlook on life. As strange as it sounds, you may hear women report that the cancer-transplant experience actually was life-enhancing. Life is richer for them now. There is a greater appreciation of every day and the importance of loved ones.
Relationships with family members may become even closer. However, a change in roles and responsibilities can also produce increased family tension and strain. Your family relationships may become more intimate or distant. Friendships may also change and take on new meaning. Some will be enriched and others will fade under the stress of the transplant experience.
The diagnosis of breast cancer may produce feelings of isolation even though you're surrounded by well-meaning family and friends. It may be difficult to talk about your situation. Perhaps on an emotional level you may feel more comfortable in the company of women who have had breast cancer or stem cell transplant (see Resource Listing).
Coping with Other Issues
After stem cell transplant, dealing with other potential issues can require additional coping skills. It's possible that you may experience difficulty with some or all of the following.
Concentration or Memory
You may not feel as "sharp" in your concentration or memory skills after your transplant. Be prepared for this and try not to be frightened by it. For the most part, this is temporary. But, it may last longer than you expect. As you progress in your recovery, memory and concentration will improve. Practice using your "brain" skills. Play word games, do puzzles. Keep mentally active. Sometimes, time will be the best healer for this.
There may be changes in your sex drive following transplant. Due to the stress of the experience, and other factors, resuming normal sexual activity may be delayed until you're feeling more like yourself. Discuss issues of intimacy with your physician. When you are ready to resume sexual activity, a water-based lubricant is suggested to manage vaginal dryness or possible painful intercourse. Realize that even though sexual desire may temporarily diminish, the need for intimacy is still important. Communicate with your partner. The need to be physically close can still result in an intimate sharing of affection.
Fatigue greatly inhibits your sexual desire. Plan sexual activities that are not physically demanding. Find times when you have just rested or had a full night's sleep.
Adapting to a body image change is another factor that inhibits sexual desire. If you've had a mastectomy or your hair has fallen out, you'll need to deal with your feelings about being desirable. For some women this is the most difficult part of having breast cancer. Other women report that they struggle with the guilt about not meeting their partner's sexual needs. Don't ignore these feelings. Discuss them openly with your spouse or speak with a counselor at the hospital. Here, again, is a time when your attitude will mean so much. Your spouse may take his signals from you. Keep the lines of communication open.
You may have underestimated how much a stem cell transplant exhausts you. Feeling tired all the time after a transplant is common. This is an effect of high-dose chemotherapy. You'll eventually feel better, but it takes months to return to normal. You'll recover at your own pace. Do not compare your progress to other women. Plan your activities according to how you feel on a daily basis. Don't push yourself. Try to do one or two tasks per day. Let others help you. Follow the signals your body sends you. If you feel tired, get some rest.
Good nutrition is vital to your recovery. If you are not able to eat food while in the hospital, you'll be given nutrition intravenously. After transplant you may experience a loss of taste or appetite due to chemotherapy and radiation. Speak to a dietitian about the best way to add calories and protein into your diet. It may be recommended that you follow a low-bacterial diet following your transplant until your immune system returns to normal. You'll be asked to avoid any foods that contain bacteria. Eat only well-cooked foods and peel any fruits or vegetables. The hospital dietitian will instruct you about general eating guidelines. Food intake problems, such as difficulty swallowing or tolerating foods, should be reported to your physician.
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