OncoLife Care Plan

Healthcare Provider Summary

Dear Healthcare Professional

A survivorship care plan was created by or for your patient using the OncoLife™ Survivorship Care Plan at www.OncoLife.org. This report is a summary of the long-term side effects the survivor may be at risk for and recommendations for their follow-up care. The report is generated from the treatment information entered by the patient or their healthcare provider. The summary provided is supported by cancer survivorship literature and expert opinion, but should not replace communication with the patient’s oncology team. Suggested management and follow-up points are broken down according to the toxicity-causing treatment (i.e. medical therapy, surgery, or radiation).

Keep in mind that survivors should continue to have screening for other cancers per the American Cancer Society guidelines and routine health maintenance as recommended by the USPTF.

You received the following treatments for Breast Cancer

  • Lymph Node Removal (Dissection)
  • Mastectomy
  • Bevacizumab (Avastin®)
  • Anastrozole (Arimidex®)
  • Had Stem Cell BMT Autologous
  • Radiation treatment for breast cancer after lumpectomy
  • Radiation for metastasis to the brain or spinal cord
  • Radiation for metastasis to the lung
  • X-ray based - Conformal Radiotherapy

What's In Your Care Plan

  • Your Summary
    • Follow Up Care For Breast Cancer
    • Surgery Side Effects
      • Lymph Node Removal (Dissection)
        • Mastectomy
        • Risks Related to Medications
          • Autologous Stem Cell or Bone Marrow Transplant
            • Risk of Developing Osteoporosis
              • Understanding Chemo-Brain
                • Fertility Concerns for Female Survivors
                  • Side Effects While Taking Aromatase Inhibitors
                    • Sexuality Concerns for Female Survivors
                      • What We Do Not Know
                      • Side Effects of Radiation
                        • Radiation for Breast Cancer (After Lumpectomy)
                          • Brain
                            • Spinal Cord
                              • Heart / Cardiovascular
                                • Lung
                                  • Bone
                                    • Skin
                                      • Lymph Nodes
                                      • Healthy Living After Cancer
                                        • General Cancer Screening for Women after Breast Cancer
                                          • Genetic Risk
                                            • Fatigue
                                            • Life After Cancer
                                              • Life After Cancer
                                              • Living with Metastatic Cancer
                                              • Tobacco
                                                • Tobacco Use and Quitting Smoking

                                                Follow Up Care For Breast Cancer

                                                General recommendations for follow-up care after breast cancer treatment include:

                                                • History and physical exam 1-4 times per year as clinically indicated for 5 years; then annually.
                                                • Mammogram annually for those who have had a single mastectomy (the first mammogram should be 6-12 months after therapy for survivors who underwent lumpectomy and radiation therapy).
                                                • Women with an intact uterus on tamoxifen should see a gynecology provider annually and notify their provider of any vaginal bleeding.
                                                • Those taking aromatase inhibitors and those whose menstrual cycles have stopped should have a Dexa scan as a baseline, then periodically.
                                                • Patients being treated with bisphosphonates or denosumab should have a dental exam and education about preventive dental care. Consider supplemental calcium and vitamin D.
                                                • Consider referral to genetic counseling if family or personal history includes early age at diagnosis of breast cancer (<50), triple-negative disease, multiple primary cancers, or a family history of breast or ovarian cancer.
                                                • Educate on a healthy lifestyle. Evidence has shown that leading an active lifestyle and maintaining a healthy weight (body mass index of 20-25), may lead to improved breast cancer outcomes.

                                                Surgery Side Effects

                                                Lymph Node Removal (Dissection)

                                                • Perform a thorough assessment of the area at risk for lymphedema, which may include limbs, genitals, abdomen, or head/neck area.
                                                • Concerning signs/symptoms of lymphedema may include a full or heavy feeling, skin changes (reddened, warm, cool, dry, hard, stiff), aching or discomfort, tightness, or less movement/flexibility in nearby joints.
                                                • Encourage preventive measures, self-assessment of changes to limbs and prompt reporting of any sign of infection.
                                                • Referral to a Certified Lymphedema Therapist at the first sign of swelling results in the best outcomes.

                                                Mastectomy

                                                • Risks of surgery include nerve damage and scarring, which can lead to decreased range of motion, pain, difficulty with motor skills and sensation on affected side.
                                                • Consider referral to physical therapy for decreased range of motion in the shoulder.
                                                • Consider physical or occupational therapy for difficulty with motor skills, temperature sensation or balance.
                                                • Treat neuropathic pain with tricyclic antidepressants, carbamazepine, gabapentin or pregabalin.
                                                • Assess for axillary web syndrome and referral for physical therapy.
                                                • Refer to a pain specialist if pain does not improve.
                                                • Refer to a lymphedema therapist at first sign of swelling.
                                                • Refer for counseling to address body image, intimacy, grief and loss issues.

                                                Risks Related to Medications

                                                Autologous Stem Cell or Bone Marrow Transplant

                                                In an autologous transplant, the patient is given very high doses of chemotherapy, which destroys their bone marrow. They are then "rescued" from their nadir by receiving pre-harvested bone marrow cells. This means that survivors have received high doses of any of the chemotherapy agents used during the transplant. When reviewing the information related to each late effect, keep in mind those medications that were given during transplant (and therefore in high doses), as this will be specified when the dose is relevant to the effect. Other recommendations after autologous transplant include:

                                                • Encourage a healthy lifestyle to decrease the risk of cardiac and lung disease, including getting regular exercise, maintaining a healthy weight, eating a healthy diet, and not smoking.
                                                • Consider re-vaccination beginning one year after transplant. Vaccination schedule recommended by consensus guidelines can be found at the NMDP: https://bethematchclinical.org/post-transplant-care/vaccinations/
                                                • Annual flu shot.
                                                • A baseline DEXA scan is recommended for autologous transplant patients with myeloma or lymphoma one year after transplant. Consider a DEXA scan one year after transplant for patients with other diagnoses.

                                                Risk of Developing Osteoporosis

                                                • Long-term use of corticosteroids, receiving chemotherapy medications, radiation to weight-bearing bones, hormone therapy, gastrectomy, orchiectomy, and bone marrow/stem cell transplant all increase the risk of developing osteoporosis.
                                                • Calcium intake of 1000-1200mg per day plus Vitamin D 400iu to 1000iu per day (ideally from food sources, and supplements when diet is not sufficient).
                                                • Encourage smoking cessation and minimal or no caffeine or alcohol intake.
                                                • Promote a healthy lifestyle with a good diet and weight-bearing and strength training exercise 2-3 times per week.
                                                • Consider screening with DEXA scan.

                                                Understanding Chemo-Brain

                                                • "Chemo-brain" can include difficulty with short-term memory, multi-tasking, new learning, reading comprehension, working with numbers, and difficulty concentrating.
                                                • Evaluate for cognitive changes and confirm that any cognitive changes are not due to a treatable cause such as hypothyroidism, depression, or anxiety.

                                                Fertility Concerns for Female Survivors

                                                • Due to cancer treatments, survivors may have fertility issues after treatment.
                                                • If a survivor wishes to get pregnant, refer to a reproductive specialist experienced in working with cancer survivors for evaluation.
                                                • Consider a high-risk obstetrician for survivors, particularly after abdominal radiation, surgery involving female reproductive organs, or if they received anthracycline chemotherapy or herceptin.
                                                • Survivors should be aware of the possibility of getting pregnant even after menstruation has stopped (due to treatments). All patients who were actively menstruating before beginning cancer treatment should use birth control during cancer treatment and for months afterwards, even if periods have stopped.

                                                Side Effects While Taking Aromatase Inhibitors

                                                • Adjunct aromatase inhibitor treatment can last for 5-10 years after primary therapy.
                                                • These may cause hot flashes and other symptoms of menopause.
                                                • Arthralgias are a common side effect and can interfere with the quality of life. Encourage a discussion with the oncology team to manage any symptoms that may lead the survivor to discontinue the medication. Walking and other moderate-intensity exercises can help reduce discomfort.

                                                Sexuality Concerns for Female Survivors

                                                • Chemotherapy agents are associated with vaginal dryness, painful intercourse, reduced sexual desire, and the ability to achieve orgasm. Many of these issues are caused by the sudden onset of menopause, as a result of cancer therapy.
                                                • OncoLink’s article on Vaginal Dryness and Painful Intercourse provides product suggestions and tips.
                                                • Encourage open communication with the patient to help them address any sexuality issues. May also consider referring to a therapist experienced in working with cancer survivors.

                                                What We Do Not Know

                                                • Many cancer treatments today have not been available long enough to determine what effects they may cause in years after treatment.
                                                • Evaluate for any new or worsening symptoms that may be unexplained by other factors.

                                                Side Effects of Radiation

                                                Long term effects of radiation therapy vary greatly depending on the areas included in the field of radiation and the radiation techniques that were used, as these continue to develop and improve. One issue that is consistent across all tissues is the possibility of developing a second cancer in or near the radiation field. Secondary cancers develop as a result of the exposure of healthy tissue to radiation. Newer radiation techniques are designed to limit this exposure, but it is not always possible to prevent all exposure and still achieve the desired outcomes.

                                                Radiation for Breast Cancer (After Lumpectomy)

                                                • Survivors of breast cancers, particularly left-sided breast cancers, may be at increased risk of cardiac complications. Please see the description of heart/ cardiovascular late effects for more information.
                                                • Routine physical examinations and yearly mammograms.
                                                • Caution when surgery is considered after radiation to the breast.
                                                • Physical/occupational therapy for arm pain, weakness, or swelling.
                                                • Rapid evaluation for new arm swelling, redness, or pain, especially with fever.

                                                Brain

                                                • Consider neurocognitive testing for memory loss, dementia, or loss of intellectual function.
                                                • Consider physical and/or occupational therapy for gait abnormalities or other areas of muscle weakness or neurologic deficit.
                                                • Consider endocrine evaluation with blood testing for hormone deficiencies for symptoms including weight gain or loss, extreme fatigue, depression, poor temperature regulation, loss of libido, or change in growth patterns.
                                                • Monitor for stroke and recurrence of cancer or development of a new cancer.

                                                Spinal Cord

                                                • Radiation can damage nerves leading to loss of strength, coordination, paralysis, or bowel and bladder control. Damage to the bones can cause a reduction in height, fracture, or curvature of the spine.
                                                • X-ray evaluation for any new back pain, loss of bowel or bladder control, paralysis, or weakness of arms or legs.
                                                • Evaluation by a neurologist for chronic, shock-like pains in the arms or legs.
                                                • Evaluation by an orthopedist for any new curvature of the spine.

                                                Heart / Cardiovascular

                                                • Survivors are at risk for early CAD, hypertension, valve abnormalities, fibrosis of cardiac tissue, heart failure, and MI. The risk varies greatly depending on dose, the number of fractions, shielding, and combination with chemotherapy.
                                                • Annual H&P including blood pressure, cholesterol levels, and blood sugar.
                                                • Counseling on a healthy lifestyle including exercise, tobacco cessation, and healthy diet.
                                                • High-risk survivors may benefit from an EKG and screening echocardiogram every 2 years.

                                                Lung

                                                • The Children’s Oncology Group recommends childhood cancer survivors should not scuba dive without medical clearance by a diving medicine specialist.
                                                • Annual influenza vaccine and pneumococcal vaccine every 5 years.
                                                • Counseling for tobacco cessation.
                                                • Chest X-ray for new cough or shortness of breath.
                                                • Immediate evaluation of hemoptysis.

                                                Bone

                                                • Radiation can increase the risk of bone fractures. Joints in the treatment field can develop permanent stiffness, pain, and arthritis.
                                                • Rapid evaluation for fracture after trauma.
                                                • Physical or occupational therapy and NSAIDs for arthritis.

                                                Skin

                                                • Skin is more sun-sensitive after radiation. Counsel to use sunscreen diligently.
                                                • Evaluation by a wound care specialist for any non-healing ulcers.
                                                • Skin can develop chronic swelling, wounds, changes in texture and color.

                                                Lymph Nodes

                                                • Radiation increases the risk of lymphedema over surgery alone. A Certified Lymphedema Therapist should be consulted at the first sign of swelling for best outcomes.
                                                • Survivors should be educated about self-care and to notify the healthcare team of any signs of swelling or infection.
                                                • Radiation and/or surgery can damage nerves, which can be further aggravated by scar formation and result in neuropathic pain. Survivors with this pain may benefit from seeing a pain specialist.

                                                Healthy Living After Cancer

                                                Survivors often wonder what steps they can take to live healthier after cancer. There is no supplement or specific food you can eat to assure good health, but there are things you can do to live healthier, prevent other diseases, and detect any subsequent cancers early.

                                                In addition to medical problems and screening, cancer survivors also sometimes have issues with insurance, employment, relationships, sexual functioning, fertility, and emotional issues because of their treatment and we will discuss those in this care plan.

                                                No matter what, it is important to have a plan for who will provide your cancer-focused follow up care (an oncologist, survivorship doctor or primary care doctor). You have taken the first step by developing a survivorship plan of care. If you would like to find a survivorship doctor to review your care plan you can contact cancer centers in your area to see if they have a survivor's clinic or search for a clinic on OncoLink's survivorship clinic list.

                                                Fatigue

                                                Fatigue is the most common side effect of cancer treatment. What many people do not know is that this feeling of overwhelming physical, mental and emotional exhaustion can last for months to years after therapy ends. However, it is important to remember that fatigue can be caused by many things and, particularly if fatigue is worsening or new, other treatable causes should be ruled out.

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