Living Your Best: Quality of Life

Young women facing the challenges of breast cancer deserve to live full and meaningful lives. Every day, YSC works to make those lives even better.

You also have many options, personally, for making your life the best it can be. Regardless of your stage, the treatment you endured or where you are in your breast cancer experience, you can and should strive for your highest quality of life. That will mean something different to every young woman. We all experience breast cancer differently and value different things in our lives. Circumstances change, too, and achieving your best life might mean different things on different days and call for different approaches.

We talk about quality of life all over our website—here, you’ll find in-depth information and tips on many of the physical and psychological challenges young women with breast cancer face. For almost every topic, you’ll find an enlightening audio file, printed brochure and additional resources packed with useful information.

Body Image

Females, society, sexiness, womanhood and body image…it’s already complex enough. A breast cancer diagnosis adds even greater complexities that others often can’t imagine. You may have strong emotions about your body right now, but you can also feel hopeful about adapting to the changes brought on by breast cancer.

As women, we learn early in life that breasts matter. Breast cancer and treatment bring changes to the body, especially these parts we’ve learned to value so highly. Some body changes last just a short time, and others last forever. With the loss of a breast or breasts, scars, hair shedding, complexion changes and weight gain or loss many young women feel ashamed or afraid that others will reject or feel sorry for them.

Even after the signs and symptoms of treatment fade, you might feel troubled by your body’s changes. Your loved ones might also have some difficulty dealing with changes in the way you look. This can be hard on you, too. Feelings of anger and grief are natural. Feeling bad about your body can also lower your sex drive. And a loss of or reduction in your sex life can make you feel even worse about yourself. Learn more about facing this challenge in our section on sexuality and intimacy.

Don’t ignore what you feel—it can help to express your emotions. At YSC, we offer opportunities for you to with other young women who have struggled with many of the feelings you might be experiencing. They can offer advice, understanding and support—even a wry joke or two to help you smile as you face your new challenges. Inform yourself with advice and perspective from our audio files and other resources.

These tips can help you cope:

  • Try to focus on the ways that coping with cancer has made you stronger, wiser and more realistic. There is so much that makes you valuable.
  • Mourn your losses. They are real, and you have a right to grieve.
  • Look for new ways to feel good inside and out. A new outfit, makeup or spa treatment may give you a lift—and remind everyone how good you look.
  • If you find that your skin has changed from radiation, ask your doctor about ways you can care for it.
  • Try to recognize that you are more than your cancer. Know that you have worth - no matter how you look or what happens to you in life.
  • Remember to be kind to yourself – today and every day.

Fatigue

Breast cancer can rob you of your energy for a number of reasons.

Extreme stress, depression, lack of rest, medications, and various chemical, physical and behavioral factors can all cause fatigue. It can also come from surgery, hormone therapy, nutritional deficiencies, sleep disturbances, hot flashes and weight gain.

Whatever stage of your breast cancer experience you are in, you should never ignore feelings of extreme fatigue. Tell your doctor or counseling professional.

For more information and a wealth of resources, visit Cancer.gov. Some women consider complementary and alternative medicine (CAM) to combat fatigue. If interested, make sure you do your research, work with your healthcare team and find reputable providers to determine what’s best for you.

Fertility

Breast cancer treatment can have significant effects on fertility—an issue of special importance to many young women.

Chemo Brain

Young women facing breast cancer know what we’re talking about: chemo brain. The mental cloudiness experienced before, during and after chemotherapy has been a source of worry, jokes and annoyance for most of us. Chemo brain, the mental and cognitive difficulties associated with treatment, is one of the most frustrating side effects of chemotherapy.

Women attribute symptoms like trouble concentrating or multitasking and forgetting details or common words to chemo brain. Some have a subtle, short-lasting experience. For others, it happens immediately and can last a long time. Many fall somewhere in between. Whatever your experience, the tips below can help you cope and continue living well after treatment. As always, talk to your healthcare provider for more information and resources.

  • Use a daily planner or PDA to keep track of your daily schedule and personal contacts. Keeping “to-do” lists can also help you stay organized and provide reminders.
  • Regular physical activity not only makes your body stronger, it also decreases tiredness, improves your mood and can make you feel more alert.
  • Like a physical work out, a positive mental workout like word or math puzzles or a class may help to exercise your brain and keep you more alert.
  • Get plenty of rest and sleep.
  • Maintain a healthy diet, including plenty of vegetables and water-based fluids
  • Make an effort to focus though it may be difficult. Try to avoid distractions during tasks.
  • Strive to keep your home and workspaces organized so you can find things in familiar places.
  • Identify the times, situations and places where you have problems. Journaling or keeping a written record of your memory problems might help you figure out strategies of your own that work even better for you.

Coping with fear of recurrence

Surviving cancer rarely means a young woman stops worrying—it’s normal to have thoughts and concerns about recurrence (the return of your cancer). But remember--you were strong enough to tackle your cancer, and you’re strong enough to manage your worries.

Fears of recurrence often peak right after treatment, but they can happen anytime. When follow-up appointments approach, or during any stressful time, you might get anxious again. The fear can range from occasional, yet concerning thoughts to a fear so strong it can affect eating, sleeping and even the joy of living. You can strive to take control of your thought-life, however, and learn effective triggers and coping strategies to keep these fears from controlling you:

  • Get and stay informed – Learn about your cancer and risk of recurrence, stick to your follow-up-care plan and take care of yourself.
  • Remove any blame – Some women blame themselves for their diagnoses, thinking it happened because of something they did or didn’t do. Never blame yourself. Cancer does not choose to punish people. It does not discriminate, and it can happen to anyone
  • Exercise — It can improve your mood. Talk to your doctor and begin an appropriate exercise program. Staying active also gives you other things to focus on—like feeling healthy, confident and strong.
  • Find ways to relax. You have countless options—too many to list here—but you can start with our audiocasts on yoga, complementary approaches and stress management.
  • Acknowledge your feelings and find ways to express them. Talk to family, friends or other young women diagnosed with breast cancer. Journal, craft or find other creative ways to give voice to your emotions.
  • Be authentic – You don’t always have to smile. Even if some people want you to always stay positive, that’s not realistic. You’ve been through more than most young women and you’re entitled to a “bad day” now and then.
  • Focus on the positive – Though you have every right to feel bad, still find ways to stay hopeful. Use your energy to stay as healthy as possible.
  • Control what you can – Empower yourself by taking an active role in your healthcare team. Strive to manage the important matters in your life and find resources throughout this site to get the help and support you need.

Facing Pain

People with cancer often face the extra challenge of pain—another test, but an opportunity to use our coping skills, support network and understanding to become stronger. First, please remember: Not every persistent pain means a cancer recurrence. Pain can result from a number of causes—including scarring, treatment side effects, other health issues and physical exertion.

If you’re facing pain during or after surgery or treatment, you don’t have to “tough it out.” Talk to your healthcare team and work with them to find a cause and a solution. The tips below can help you cope and take on this challenge, too, with confidence:

  • Talk with your doctor – make sure your team knows how much it hurts. Use the 0-to-10 pain scale, where zero means no pain and 10 means the worst pain. Tell your doctor exactly where it hurts, when it hurts and what the pain feels like. Also share any medications taken or other remedies you’ve tried. If you use a pain diary (a log of your pain occurrences), bring it with you. These journals can be powerful tools for you and your doctor to combat pain. For help in starting one, check out our Newly Diagnosed Treatment Navigator.
  • Ask to meet with a pain or palliative care specialist. They can include oncologists, anesthesiologists, neurologists, neurosurgeons, nurses or pharmacists and can offer you expert advice on controlling your pain.
  • Take advantage of all your options and explore various approaches – prescription medication, acupuncture, meditation, relaxation techniques, physical therapy and many others.
  • If you have insurance, make sure you know what your company will and will not cover.

The Blow Below the Belt – Changes in Sexual Desire and Intimate Experiences

Breast cancer can affect the most intimate parts of our lives—the diagnosis and treatment can unfortunately reduce a young woman’s libido, often for a long time. Emotional issues and physical changes can follow treatment, and these can also affect young women’s sex lives.

Physical changes can come from surgery, radiation and chemotherapy. Women diagnosed with breast cancer may face anxiety, body image and stress. Young women may also face changes for which none of us are really prepared: vaginal dryness, painful intercourse, loss of sensation, symptoms of menopause and worry about sexual encounters. These issues can make young women think of sex as something to avoid.

You probably feel some real emotional and psychological stress about these difficulties. Seek resources and advice, and take some steps to manage these challenges and adapt to your life after treatment. Your doctor, nurse, social worker or other healthcare professional may be able to give you some assistance. Begin the conversation. Understand that many sexual problems don’t just go away, and some are easier to solve than others. But you have access to many informational and educational resources to help you cope and be your best.

Remember to:

  • Communicate openly with your partner—without blame. Tell your partner what’s going on and how you feel. Ask your partner how he or she feels. Avoid judging yourself or your partner. Listen attentively and ask that your partner do the same. Be careful to avoid misinterpretation on either side—it can be common when discussing intimacy
  • Intimacy means more than sexual intercourse. Even if you don’t enjoy sex like you used to, you can explore self-satisfaction, kissing, hugging and just being close. Strive to stay connected.
  • Turn your thoughts toward the positive. Discover new ways to feel sexy and new ways to be intimate. Avoid negative thinking—it will only make intimacy more challenging.
  • Be open to change.

A Note about birth control: If you are pre- or peri-menopausal, talk with your doctor about your type of breast cancer and the best birth control method for you.

Dating

For many young women affected by breast cancer, body image and sexual issues can make dating more challenging. As you struggle to accept the changes yourself, you may also worry about how someone else will react to physical things like mastectomy scars or a reconstructed breast. You might find it awkward to discuss your challenges—living with a life-threatening disease, sexual problems, the need for extra lubricants or your loss of fertility. This can make it even harder to have conversations and feel close with your new partners.

Like many young women, you may wonder how and when to tell a new person in your life about your cancer and body changes. Understandably, you have some fears of rejection—but don’t let them keep you from finding the social relationships that will be meaningful in your life. Don’t turn cancer into an excuse for not dating or trying to meet people. Like anyone, you won’t have a perfect experience on every date, but you will always learn.

Find out what you can about this new relationship until you develop a feeling of trust and friendship—then you can talk about your cancer. Consider practicing what you will say to someone if you worry about how you will handle it. Think about how he or she might react, and prepare a response. Remember that we all face rejection—it often has little to do with your breast cancer. And if it does, that’s not who you want to be with anyway.

Early Menopause

When breast cancer occurs at a young age, it brings on many unique challenges—including the possibility of early menopause. Treatments, specifically chemotherapy and hormone suppression, can make these features of middle age appear too soon.

You can find many resources and link to other young survivors on YSC's community boards to help you cope. Researchers also continue to look for new ways to manage these symptoms, so there are good reasons to hope for an even better future. Many young women have been down this road and have found ways to cope with early menopause—you can do it, too.

Talk to your oncologist or gynecologist about medicines, supplements or other methods to help you control your menopause symptoms. Make sure you speak to your healthcare team about possible effects on heart and bone health.

Symptoms of early menopause include:

  • Hot flashes - Hot flashes are often worse at night and can affect sleep or cause mood changes. You can take some steps for relief, though.
  • Irregular periods - One of the first signs of early menopause is a change in your periods. They may become less regular. They could be lighter. Some women have short times of heavy bleeding. Sometimes, they stop all of a sudden. Over time, some young women will get regular periods again, but others may not. Even though your doctor may have discussed early menopause with you, give yourself permission to mourn the loss of your fertility.
  • Vaginal dryness or discomfort – Vaginal tissue may become drier and thinner. You may be more likely to get vaginal infections. Dryness can cause painful intercourse.
  • Lack of interest in sex. Hormonal changes may make it hard for you to become sexually aroused.
  • Fatigue and sleep problems. You may feel tired or have trouble getting to sleep, getting up early or getting back to sleep after waking up in the middle of the night.
  • Memory and other problems, such as depression, mood swings and irritability. Some of these, especially memory problems, may occur regardless of a cancer diagnosis as we grow older. Changes in your hormone levels can partly explain emotional changes.
  • Other changes in your body. You may notice your waist gets bigger, less muscle and more fat around your body or thinning and loss of elasticity of your skin.

No young woman welcomes these symptoms, but luckily you can take some steps to manage them. Within this site many audio files are focused on managing treatment side effects and some are specific to early menapause. Rely on these helpful tips for relieving hot flashes:

  • Keep a little notebook to log when they occur. This detective work can help you make changes to prevent or lessen your hot flashes. Some attribute an increase in flashes to caffeine, alcohol or spicy foods.
  • Drink plenty of water and water-based fluids.
  • Don’t smoke.
  • Exercise and practice proper nutrition to keep yourself at a healthy weight.
  • Dress in layers you can easily take off and put on.
  • Cotton sheets and PJs may make your nights a little cooler.

Nutrition and weight management

Some types of chemotherapy may leave women with challenging weight problems—they can cause survivors to gain weight in a particular way by losing muscle and gaining fat tissue. Unfortunately, this can make losing weight more difficult since many of the usual ways won’t work. It’s normal to feel some frustration—but be patient with yourself. You have the ability to control a lot of things and make some positive choices, like eating a healthy diet:

  • Eat a plant-based diet and have at least 5-9 servings of fruit and vegetables daily.
  • Try to include beans in your diet, and eat whole grains several times daily.
  • Choose foods low in fat and salt.
  • Talk to your doctor about weight-bearing and strength building exercise
  • Keep faith in yourself as you patiently strive to reach and stay at a healthy weight.

Some young women face a different challenge after their diagnosis – they have no desire to eat, and they lose weight. Talk to your doctor or nutritionist about your appetite and weight challenges. Try eating several, smaller nutritional meals daily. Eat healthy

Take care of them bones

Cancer treatment can affect your bone health. Hormonal changes and menopause put some women at increased risk for losing bone tissue. You should be aware of a couple conditions: Osteopenia means you have less bone density or bone mass than normal. This can lead to osteoporosis, where the decrease in bone mass and density makes bones fragile and easier to break. Talk to your doctor about taking a bone-density test. You can find out your risk for bone conditions and take action to stay healthy.

Doctors may use a class of drugs called bisphosphonates to treat osteoporosis. These drugs can also help with bone issues related to cancer. Doctors use them to treat hypocalcaemia (abnormally low calcium levels) and other, related cancer symptoms. They may also reduce metastasis to the bones and, when cancer has spread to the bones, they can prevent fractures, improve healing and reduce pain. Note, as with any drug, bisphosphonates have side effects. Talk with you healthcare team and ask questions to decide what’s best for you and your bones.

Lymphedema

Because of the serious affects cancer can have on the lymph system, some cancer survivors also face the challenges of lymphedema—the build-up of fluid in soft body tissues. This happens when the lymph system gets damaged or blocked, which often happens because of cancer and cancer treatment. Because of cancer, lymphatic system damages or blockage can occur due to infection, removal of lymph nodes, radiation to the affected area, or scar tissue from radiation therapy or surgery. For women with breast cancer lymphedema usually happens in the arm.

Lyphedema may develop within a few days or few years after breast cancer treatment. Some conditions increase your risk: slow healing of the skin after surgery; a tumor that blocks the lymph duct or lymph nodes or vessels in the neck, chest, underarm, pelvis, or abdomen; scar tissue in the lymph ducts under the collarbones caused by surgery or radiation therapy; and removal or radiation of lymph nodes in the underarm. The risk of lymphedema increases with the number of lymph nodes affected.

When surgery only removes the sentinel lymph node (the first lymph node to receive lymphatic drainage from a tumor), you have less risk of lymphedema.

Lymphedema can cause long-term physical, psychological, and social challenges—but you can also take some important steps to manage it and them. Inform yourself with the many audio files and printed resources on managing lymphedema, or take action with these tips:

  • Talk to your healthcare team about your concerns and any symptoms you might have.
  • Consider consulting a physical therapist who specializes in lyphemdema. This expert advice can help you deal confidently with your symptoms.
  • Contact the National Lyphemdema Network for research updates and additional information that might tell you how to better manage or treat this condition.

Please note one misconception: Exercise does not increase the risk of lymphedema. In the past, doctors told women not to exercise the affected arm. Studies now show that slow, carefully controlled exercise is safe and may even help you prevent lymphedema. Studies show that, in breast-cancer survivors, upper-body exercise does not increase the risk of lymphedema.

Considering Complementary and Alternative Medicine (CAM)

Many cancer survivors turn to some additional treatment options to help make them feel even healthier as they cope with cancer and its symptoms. You might want to investigate these various complementary and alternative approaches. People use these many different methods to prevent illness, reduce stress, prevent or reduce side effects and symptoms, or control or cure disease.

  • “Complementary" usually means you use a treatment in addition to the ones your doctor prescribes.
  • “Alternative” usually means you use it instead of treatments prescribed by a doctor.
  • “Integrative medicine” combines conventional treatments with CAM treatments that are supported by evidence.

Common CAM therapies include imagery or relaxation, acupressure and massage, homeopathy, vitamins or herbal products, special diets, psychotherapy, prayer, yoga and acupuncture.

Inform yourself about your complementary and alternative options with the NCI’s Thinking About Complementary & Alternative Medicine: A Guide for People With Cancer or visit www.annieappleseedproject.org. You can also find a wealth of information on our audio files.

If you are thinking about using any of these methods, discuss it with your doctor or nurse first. Some complementary and alternative therapies may interfere or be harmful when used with medicines normally prescribed by a doctor.

Finding Meaning

As a courageous young woman facing cancer, you not only have the ability to live a full life—you have the ability and right to live a life full of meaning. As you improve your quality of life, try to stay focused on things that matter to you and provide meaning. If you have hobbies, volunteer work, faith-based activities or a job you love, stay involved as much as you can. During treatment, work with your healthcare team to ensure your regimen makes room for the meaningful activities in your life.

Some survivors take great meaning from their religious and spiritual beliefs. But whether you consider yourself religious or not, you can find it very valuable to focus on what is meaningful in your life. You can find for yourself greater satisfaction with life, freedom from regret and a sense of inner peace.

People take many paths to reach what matters to them: meditation, silent observation, communing with nature, expressing yourself through creative pursuits, prayer, serving others or expressing your values by supporting a cause. Do what feels right and works for you, even if that’s simply striving to live in the moment.

Building a Supportive Community

When you have the support of others who care about and understand you, it helps give you the strength to make your life as full as it can be. Build and search your support community to ensure you have the help you need to cope with your cancer. This community goes beyond your healthcare team and, more importantly, to close friends, family and a network of others who understand your experience.

At YSC, we welcome a community of young women who have faced the same challenges as you and are here to support you. Many women, especially young women, find valuable strength, support and friendships by connecting with others facing breast cancer.

Tap into YSC’s network of support through our SYNC program. Search the site, call or email to learn more about the work and programs of YSC, our work in advocacy, research and the community at large.