Unique issues for young women with breast cancer

Hester Hill Schnipper, LICSW, OSW-C Program Manager Emeritus, Oncology Social Work

MARCH 26, 2019

All breast cancers are not the same. The experience of having breast cancer is not the same for young women as it is for their older sisters. Fewer than 5% of the approximately 268,000 breast cancers diagnosed in the United States each year are in women under 40, but that still adds up to a lot of women.

Stage for stage and detail for detail, the treatments for women of all ages are quite similar. Women with ER (estrogen receptor) positive breast cancers receive different anti-estrogen therapies if they are pre- or post-menopausal, but the standard chemotherapy regimens and surgeries and radiation therapy treatments are the same. It is less the physical experience and more the psychosocial one that is so different for young women.

Almost everyone is surprised by a breast cancer diagnosis, but a woman in her 20s or 30s is shocked. She probably has not yet started having regular mammograms, and, unless her family history is strong, breast cancer probably is not on her mind. During the early decades of adulthood, the focus is on making choices to build a life. Getting educated and beginning a professional life while considering personal relationship choices are all consuming.

Here are some of the issues that must be faced by young women with breast cancer.

  • Partners: If a woman is already married or partnered, it is devastating for both people to face a cancer diagnosis. If she is in a newer relationship, there are authentic worries whether the other person will choose to stay. If she is single, there are worries about finding someone later who will accept her changed body and changed circumstances.
  • Sexuality and intimacy: Cancer and cancer treatment are never sexual aides. Diminished libido and responsiveness are problems for everyone going through cancer, but can be especially stressful for younger couples.
  • Fertility: Unless a woman is certain that she has completed her family, the possibility of losing her fertility and future options is devastating. There are now ways to harvest and freeze eggs before starting treatment, but this option is sometimes not medically advised and is always stressful. Insurance may or may not cover the cost of preserving eggs. Even women who already have children do not want to lose the freedom of future childbearing choices; it is especially painful for women who have not yet started their families.
  • Young children: The most painful fear for any parents with cancer is worry about their children’s future. Will I be alive to raise them? What will happen to them if I die? There are also the day-to-day responsibilities and tasks of childcare. Taking care of young children is always exhausting, and, during cancer treatment, it is especially challenging. Who is available to help?
  • Parents: Parents of cancer patients of any age are frantically worried. Whatever the existing relationships are, they will become more intense, and finding the right balance of independence and neediness is challenging for everyone.
  • Professional concerns: Women who are still in school or training may need to consider taking some time away from their programs. Women who are working will also need some time off for medical appointments, treatments and recovery, and it can be more difficult to make these arrangements early in a career.
  • Finances: Cancer is expensive. In addition to co-pays and deductibles and uncovered medical bills, there are other related expenses. Women in active treatment likely will need to hire additional childcare or other household assistance, pay for travel and parking and other costs of getting to appointments, purchase a wig or hats or scarves and maybe some other new clothes to fit a new body. Women with good workplace benefits are luckier in this respect than those who only get paid when they work or who work for themselves and don’t see a paycheck when they can’t be active.
  • Self-image: Women who choose or need a mastectomy, with or without reconstruction, have the biggest permanent changes to their bodies. However, lesser breast surgery and radiation often change the way breasts look and feel. If chemotherapy is part of the treatment and hair loss ensues, there is a long stretch of months that appearance is drastically altered. It is probably impossible to feel one’s usual pretty and confident self during cancer, but sometimes it is devastatingly hard and persists after treatment ends.
  • Friendships: It is a truism that cancer changes friendships. Some friends will vanish while others will surprise you with their support and presence. Having a life-threatening illness is completely out of sync with the usual set of young adult issues. It is tough to empathize with friends’ concerns that seem superficial and unimportant, but it is also vital to hear about their lives and remain connected.

Cancer changes everyone. Life will never be quite the same, and a feeling of carefree innocence may be forever lost. However, a perspective of valued relationships and priorities, appreciation for beauty and moments, and an early understanding that life is finite will bring lifelong benefits.

Were you diagnosed with breast cancer as a young woman? Share your story.