Young adults with breast cancer face unique survivorship issues

RELEVANCE

Most relevant for: Young women with breast cancer concerned about survivorship issues.

It may also be relevant for:

people with breast cancer

Relevance: Medium-High

Research Timeline: Post Approval

Relevance rating details

What is this update about?

This update focuses on the experiences of young adults with breast cancer, based on a presentation by oncologist Dr. Jenni Sheng of Johns Hopkins Medicine at the 2024 San Antonio Breast Cancer Symposium. It looks at common concerns, including fertility, psychosocial health, weight gain and sexual health, and offers insight into ways to address these issues to improve quality of life.

Why is this topic important?

Young people with breast cancer (age 40 and younger) have unique needs related to their age and of life. People who develop breast cancer at younger ages have an higher chance of having hereditary breast cancer.

Young adults with breast cancer are especially concerned with fertility, overall well-being in mental and social health (psychosocial health) and specific side effects related to age and stage of life, such as sexuality, weight gain and early menopause. Survivorship support can include traditional and integrative medicine, support programs and lifestyle changes. This area of research has become an even higher priority as people diagnosed with breast cancer now live longer after treatment.

Survivorship challenges

Fertility and childbearing

Pregnancy after breast cancer is possible, and research shows encouraging results:

More than one-third of women who develop breast cancer by age 40 are interested in having biological children within five years of diagnosis, according to the Young Women’s Breast Cancer Study. Of those who attempted to become pregnant, nearly 70% were successful and had healthy pregnancies.
In a study of people with mutations, 22% became pregnant within 10 years of having breast cancer. On average, it took about 3.5 years from diagnosis to having a baby. (Note this study included all women with BRCA mutations including those not seeking pregnancy).
Data from the POSITIVE trial of women with breast cancer indicated that hormonal breast cancer treatment may be safely interrupted for pregnancy. Among participants seeking to have a child, 70% had one or more pregnancies after their breast cancer diagnosis.

If you are considering pregnancy after breast cancer, consider the following helpful tips:

Discuss pregnancy plans early: It is best to discuss pregnancy with your healthcare team as soon as possible, preferably at diagnosis and before the beginning of treatment. An oncology fertility specialist can help you understand and consider options and next steps.
Consider ovarian suppression: For some, blocking release from the ovaries—a treatment called ovarian suppression—may preserve fertility. For some, it may improve treatment outcomes.
Explore fertility preservation: Women who want to get pregnant in the future may consider freezing fertilized eggs or assisted reproductive technology (such as in vitro fertilization).
Follow recommended waiting periods: Guidelines recommend waiting until treatment is complete before trying to become pregnant. Doctors call this waiting time a “washout period” and the recommended waiting times vary based on the type of treatment:
- After chemotherapy: 1 year
- After trastuzumab: 7 months
- After tamoxifen: 3 months
- For new treatments, the optimal washout time is unclear
Continue treatment after pregnancy: If hormonal treatment is interrupted for pregnancy, it is important to continue and complete treatment afterward.

Read more about the impact of cancer on fertility here. For those with BRCA mutations, additional information about the impact of breast cancer on fertility can be found here.

Coping with anxiety and distress
Psychosocial distress is common among young adults with breast cancer. This type of distress can lead to feelings of anxiety, fear, depression and concerns about a challenging situation, such as a diagnosis. The National Comprehensive Cancer Network (NCCN) Breast Cancer Group recommends screening young adults with breast cancer for signs of distress. Screening typically includes a standard set of questions in the doctor’s office.

For younger people with breast cancer, the fear of cancer coming back (recurrence) is common. In one study, nearly two-thirds of participants were moderately or very concerned about recurrence at diagnosis. Although this stress decreases with time, five years after diagnosis, almost half (48%) of participants were moderately or very concerned about recurrence.

Different coping strategies can impact this stress. People who rely on emotional support from family members were less likely to have anxiety two years after diagnosis. In contrast, people who turn to alcohol or drugs to cope and those who focus on taking care of others were more likely to have anxiety two years after diagnosis.

The following coping strategies can help with distress:

Emotional support: Partners, family, and friends can be good sources of support.
Therapy: behavioral therapy (CBT) and enhanced cognitive therapy (ECT) can help manage distress. CBT can help individuals recognize and change their thought patterns in a positive way, while ECT can provide additional techniques to address difficult emotions and unhelpful thought patterns.
Structured couples therapy: This type of therapy can help improve communication and lower anxiety related to fertility.
Fear of cancer recurrence therapy (FORT): This specialized therapy program helps to address and reduce fears related to recurrence. It involves six two-hour weekly sessions where participants learn to recognize triggers, become more comfortable with uncertainty, set realistic goals and learn to cope.

Managing side effects of treatment
Young adults with breast cancer often have concerns about the side effects of treatment. These can include issues related to sexual health, weight gain, insomnia, musculoskeletal symptoms and menopausal symptoms such as hot flashes and fatigue. Specialists can help manage side effects. For instance, insomnia was found to improve with cognitive behavioral therapy and more so when combined with bright light therapy.

Premenopausal women with breast cancer gain more weight than postmenopausal women, in part because they may be less active:

Physical activity is essential for maintaining a healthy weight and preventing long-term health issues.
- A recent study in France showed that modest exercise for 90 minutes to 5 hours per week was linked to lower rates of cancer recurrence, particularly among premenopausal women (read our XRAY review for more information).
- Current NCCN guidelines recommend 150 minutes of physical activity per week.
- Young adults with breast cancer are more likely to stick with exercise when encouraged by their doctor.
Dietary changes can help avoid unwanted weight gain:
- Adopt a balanced diet of mostly vegetables (30%), whole grains (30%), fruit (20%) and lean protein (20%) to support overall health.
- Add soy to your diet. It has been linked to lower cancer risk (read more in this XRAY review).
- Limit how often you eat red meat and drink alcohol. The NCCN suggests diets with no more than 18 ounces of red meat weekly. Avoid alcohol as it may increase risk of breast cancer. If you choose to drink, limit alcohol to one serving per day (two for men) and 3 servings per week or less.

In addition to weight gain, aspects of sexual health are often affected by breast cancer treatment. Vaginal dryness is a common sexual side effect, but there are methods to address this concern. Avoid scented products in the vaginal area, which can irritate sensitive tissue. Nonhormonal moisturizers can provide relief. Topical estrogen therapy may be a safe option to treat vaginal dryness.

Many options can improve quality of life, so it is important to discuss breast cancer treatment side effects with your doctor if they occur. Research is ongoing to better understand and address the side effects of breast cancer treatment.

What does this mean for me?

Concerns about quality of life after treatment may be common if you have had breast cancer, but help is available. Your healthcare team can recommend specialists who can help manage specific concerns. These specialists may include social workers, psychologists, pelvic floor physical therapists, onco-fertility specialists, menopause specialists and child life specialists.

The following options highlight where some specialists can assist:

If you are considering having children, discuss this goal with your healthcare team as soon as possible. They can help adjust your treatment plan, explore alternative options and connect you with a cancer fertility specialist, if necessary.
If you struggle with feelings of sadness or anxiety, ask for support from a therapist who specializes in cancer care.
If fear of recurrence is affecting you, ask about fear of cancer recurrence therapy (FORT), which can provide helpful coping methods.
If you need help with challenges such as insomnia, anxiety related to fertility, weight gain, sexual side effects, hot flashes and fatigue, consider participating in cognitive behavioral therapy, which can improve thought patterns and emotional well-being.
Incorporating regular physical activity into your daily life can help with weight gain, fatigue, and pain in muscles, bones and joints.
If you experience vaginal dryness, avoid scented products, use non-hormonal lubricants regularly and talk with your doctor about topical estrogen.

Treatment can bring about many changes, but with the right support and strategies, you can improve your quality of life and feel empowered to manage these challenges.

Reference

Sheng J. Survivorship. Presented at the 2024 San Antonio Breast Cancer Symposium.

This project was supported by the Cooperative Agreement Number, NU58DP007909, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of FORCE and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.

Disclosure: FORCE receives funding from industry sponsors, including companies that manufacture cancer drugs, tests and devices. All XRAYS articles are written independently of any sponsor and are reviewed by members of our Scientific Advisory Board prior to publication to assure scientific integrity.

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posted 2/28/25

Questions To Ask Your Doctor

I am interested in pregnancy in the future. How would pregnancy plans affect my treatment?
Can you refer me to an oncofertility specialist?
Can you recommend a therapist who works with people who have cancer?
What do you recommend to help with sexual side effects? Weight gain?
What is the best way to contact you when I have questions about side effects?

Guidelines

The National Comprehensive Cancer Network (NCCN) provides fertility guidelines for adolescents and young adults diagnosed with cancer. According to the NCCN, addressing fertility as well as sexual health and function should be an essential part of the care of young adults with cancer whose treatments may impair their fertility. This care should include:

Assessing the risk of impaired fertility due to cancer and its treatment and discussing options for fertility preservation. This should be done as soon as possible before the start of therapy and throughout the treatment.
Discussing the risks of infertility due to cancer and related treatment.
Considering the emotional impact of discussions about fertility preservation.
Discussing fertility plans and preferences.
Discussing fertility preservation options.

For patients who wish to preserve fertility:

Initiate referral to a fertility preservation clinic and/or provide resources for off-site/remote sperm banking as soon as possible.
Provide information on financial resources available for fertility preservation.
Discuss:
- The importance of follow-up with a gynecologist or fertility specialist to monitor ovarian function over time.
- The effects of treatment on breastfeeding.
- Safe timing for considering pregnancy after treatment.

For all premenopausal women:

Discuss the importance of avoiding pregnancy and options for safe and effective birth control while in treatment.

Updated: 03/05/2025

Guidelines

Nutrition for people diagnosed with cancer

The National Comprehensive Cancer Network (NCCN) recommends the following for cancer survivors:

Think about your food choices and the amount of fruits, vegetables and unrefined grains you eat compared with red and processed meats, alcohol, and foods or beverages with added fat or sugar.
Think about your eating habits, including portion size, snacking, how often you eat out and the use of added fats or sugars.
All survivors should be encouraged to:
- Make informed choices about food to ensure variety and adequate nutrient intake.
- Limit refined sugars.
- Eat a diet that is at least 50% plant-based, consisting mostly of vegetables, fruit and whole grains.
- Track calorie intake; monitoring calories is an effective way to manage weight.
- Minimize alcohol to no more than one drink per day for a woman and two drinks per day for a man.
For patients desiring further dietary guidelines, the USDA approximate food plate volumes are:
- Vegetables and fruits should comprise half the volume of food on the plate
- Vegetables: 30% of plate; fruits: 20% of plate
- Whole grains: 30% of plate
- Protein: 20% of plate
Recommended sources of nutrients:
- Fast: Plant sources such as olive or canola oil, avocados, seeds and nuts, and fatty fish.
- Carbohydrates: Fruits, vegetables, whole grains and legumes.
- Protein: Poultry, fish, legumes, low-fat dairy foods, and nuts.

The Academy of Nutrition and Dietetics, the United States Office of Disease Prevention and Health Promotion and the American Institute for Cancer Research also publish expert guidelines on nutrition and health.

Updated: 12/12/2021

Guidelines

The National Comprehensive Cancer Network and the American Cancer Society have recommendations for physical activity for cancer survivors:

Physical activity and exercise recommendations should be tailored to each person's abilities and preferences.
People should try to engage in some physical activity daily; this may include:
- taking the stairs.
- walking more.
Each week, people should try to achieve the following:
- At least 150 minutes of moderate-intensity exercise, with an ideal goal of 300 minutes, 75 minutes of vigorous activity or a combination of the two.
- Two to three sessions of strength/resistance training that include all of the major muscle groups (chest, shoulders, arms, back, core and legs).
- Stretch major muscle groups at least two days per week.

Avoid sitting or lying down for long periods and other prolonged sedentary behavior.

Updated: 03/08/2023

Topic: Addressing the needs of young adults with breast cancer

RELEVANCE

Relevance: Medium-High

Research Timeline: Post Approval

What is this update about?

Why is this topic important?

Survivorship challenges

What does this mean for me?

Reference

Questions To Ask Your Doctor

Guidelines

For patients who wish to preserve fertility:

For all premenopausal women:

Guidelines

Nutrition for people diagnosed with cancer

Guidelines

Knowledge Can Save Lives