New Guidelines Address Breast Cancer Survivors’ Long-Term Needs

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The American Cancer Society (ACS) and the American Society of Clinical Oncology (ASCO) have developed new guidelines on breast cancer survivorship care.

The guidelines are to help primary care doctors identify and manage possible physical and psychosocial long-term and late side effects of cancer and its treatment, as well as other aspects of post-treatment survivorship care for adults who’ve been diagnosed with cancer.

The guidelines were published on Dec. 7, 2015 in CA: A Cancer Journal for Clinicians. Read “American Cancer Society/American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline.”

ASCO is a national organization of oncologists and other cancer care providers. ASCO guidelines give doctors recommendations for treatments and testing that are supported by much credible research and experience.

These breast cancer guidelines are the third in a continuing series of survivorship. The earlier guidelines addressed the needs of prostate and colorectal cancer survivors.

To develop the guidelines, a group of experts reviewed more than 1,070 scientific journal articles that were published up to April 2015.

The guidelines address five areas that are considered most important for women who have been treated for breast cancer:

  • screening for a breast cancer recurrence (the cancer coming back)
  • screening for a second primary breast cancer
  • assessing and managing physical and psychosocial long-term and late effects of breast cancer and treatment
  • maintaining good health
  • care coordination

Screening for recurrence

The guidelines recommend that primary care doctors give breast cancer survivors individualized follow-up care based on:

  • age
  • specific diagnosis
  • treatment recommendations of the woman’s oncology team

Women also should receive a detailed cancer-related history and physical exam:

  • every 3 to 6 months for the first 3 years after primary treatment (primary treatment is usually surgery)
  • every 6-12 months for the next 2 years
  • every year after that

Women who had a single mastectomy should have a mammogram every year of the remaining breast. Women who had a lumpectomy should have an annual mammogram of both breasts. Only women who are at high-risk -- women who have an abnormal gene or strong family history, for example -- should have routine screening with breast MRI.

Primary care doctors also should:

  • inform and counsel all women about the signs and symptoms of recurrence
  • assess the cancer history of a woman’s family and offer genetic counseling if hereditary risk factors are suspected
  • counsel women taking hormonal therapy about the importance and benefits of taking this medicine as long as it is prescribed

Screening for second primary cancers

Primary care doctors should:

  • screen for other cancers as they would for women in the general population who are at average risk (guidelines for high-risk women already exist)
  • provide a yearly gynecologic assessment for postmenopausal women taking tamoxifen, Evista (chemical name: raloxifene), or Fareston (chemical name: toremifene)

Assessing and managing physical and psychosocial long-term and late effects of breast cancer and treatment

Body image concerns:

  • women should be assessed for body image/appearance concerns
  • women should be offered the option of adaptive devices (for example, breast prostheses, wigs, etc.) and/or surgery when appropriate
  • women should be referred for psychosocial care if needed

Lymphedema:

  • women should be counseled on how to reduce the risk of lymphedema
  • women who have lymphedema or swelling that suggests lymphedema should be referred to a lymphedema therapist/specialist with experience diagnosing and treating the condition

Heart problems:

  • women’s lipid levels should be monitored
  • cardiovascular monitoring should be offered, if needed
  • women should be counseled about lifestyle modifications that promote heart health, potential heart health risk factors, and when to report relevant symptoms, such as shortness of breath or fatigue

Chemo brain (cognitive difficulties):

  • women should be asked if they’re having cognitive problems
  • if women are having cognitive problems, they should be referred for assessment and treatment

Depression and anxiety:

  • women should be assessed for distress, depression, and/or anxiety
  • women at high risk of depression should be given an extremely thorough assessment
  • women who are depressed or anxious should be offered counseling, medicine, and/or referrals to other mental health resources and experts

Fatigue:

  • women should be assessed for fatigue and treated for any underlying causes, including low red blood cell counts, thyroid problems, and heart problems
  • women should be referred for treatment for other factors that may affect fatigue, including sleep problems, pain, and mood disorders
  • primary care doctors should recommend regular exercise for women who have fatigue
  • women should be referred for cognitive behavioral therapy (a specific type of counseling), if needed

Bone health:

  • postmenopausal women should have a baseline DEXA scan
  • women taking an aromatase inhibitor should have a DEXA scan every 2 years
  • premenopausal women taking tamoxifen, Zoladex (chemical name: goserelin), Lupron (chemical name: leuprolide), or Trelstar (chemical name: triptorelin) should have a DEXA scan every 2 years
  • women who have chemotherapy-induced premature menopause should have a DEXA scan every 2 years

Pain and neuropathy:

  • women should be asked about any pain they’re having, as well as its intensity and history
  • if women are in pain, they should be offered medicines, physical activity, and/or acupuncture to ease it
  • once the underlying cause of the pain has been determined, women should be referred to an appropriate specialist
  • women should be assessed for peripheral neuropathy (numbness and tingling in the hands and feet) and offered appropriate treatment if needed

Infertility:

  • women with fertility problems should be referred to an infertility specialist as soon as possible

Sexual health:

  • women should be assessed for sexual dysfunction and problems with sexual intimacy
  • women should be offered non-hormonal, water-based lubricants and moisturizers for vaginal dryness, if needed
  • women should be referred to a specialist or counselor if needed

Hot flashes:

  • women should be offered an SSRI (selective serotonin reuptake inhibitor), SNRI (selective serotonin-norepinephrine reuptake inhibitor), or gabapentin (brand name: Neurontin) if they are having hot flashes; SSRIs and SNRIs are antidepressant medicines that have been shown to ease hot flashes; gabapentin is a medicine used to treat nerve pain and has been shown to ease hot flashes
  • primary care doctors should tell women about lifestyle and environmental changes they can make to help ease hot flashes

Maintaining good health

Primary care doctors should determine what information a women needs regarding breast cancer and its treatment, side effects, other health concerns, and available support services and then provide that information or refer her to places where she can get what she needs.

Women also should be advised to:

  • achieve and maintain a healthy weight
  • exercise regularly -- at least 150 minutes of moderate exercise or 75 minutes of vigorous exercise per week that includes strength training exercise at least 2 days per week; women who were treated with chemotherapy or hormonal therapy after surgery should be especially urged to do strength training
  • eat a healthy diet that’s rich in vegetables, fruit, and legumes and low in sugar and processed foods
  • limit alcohol
  • quit smoking if they do smoke

Coordination of care

Primary care doctors should talk to a woman’s cancer treatment team and work together to develop a survivorship care plan. Primary care doctors also should:

  • continue to communicate with the cancer treatment team throughout post-cancer treatment care
  • include caregivers, spouses, partners, or other family members in survivorship care and support

"Breast cancer survivors face potentially significant impacts of cancer and its treatment and deserve high-quality, comprehensive, coordinated clinical follow-up care," said the authors, one of whom was Patricia Ganz, M.D., professor of medicine and public health at UCLA and member of the Breastcancer.org Professional Advisory Board. "Primary care clinicians must consider each patient's individual risk profile and preferences of care to address physical and psychosocial impacts."

When your main breast cancer treatment is done, it’s important to focus on what’s now most important: your good health. You have to make sure you get the best ongoing care and live your best life. If you’ve finished breast cancer treatment and your oncologist hasn’t talked to you about a survivorship care plan, it’s a good idea to bring it up at your next appointment. Here are some questions you may want to ask your oncologist:

  • Can I get a survivorship care plan in writing that explains all the medical issues I need to consider and tells me which screening tests I need and when I should have them?
  • Which doctor should I see for each medical issue?
  • If your oncologist recommends that you see a specialist -- a cardiologist for example -- and you’ve never seen one before, you may want to ask for a referral to a specific doctor.
  • If there is anything in your survivorship care plan that you don’t understand, ask your doctor or nurse to explain it.

It’s also a good idea to talk to your primary care doctor about your survivorship care plan and ask which parts of it she or he will be responsible for.

There’s only one of you and you deserve the best care possible, both during and after cancer treatment. Because the idea of survivorship care plans is relatively new, you may have to advocate for yourself to make sure you that get a written plan.



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