Life After Breast Cancer: Survivorship

1. Life After Breast Cancer:Survivorship Mary Helen Hackney, M.D., FACP VCU Massey Cancer Center March 2013

2. I have no disclosures I am employed by VCU

3. 2008 Estimated US Cancer Deaths* Men294,120 Women271,530 Lung & bronchus 31% Prostate 10% Colon & rectum 8% Pancreas 6% Liver & intrahepatic 4%bile duct Leukemia 4% Esophagus 4% Urinary bladder 3% Non-Hodgkin 3% lymphoma Kidney & renal pelvis 3% All other sites 24% • 26% Lung & bronchus • 15% Breast • 9% Colon & rectum • 6% Pancreas • 6% Ovary • 3% Non-Hodgkin lymphoma • 3% Leukemia • 3% Uterine corpus • 2% Liver & intrahepatic bile duct • 2% Brain/ONS • 25% All other sites ONS=Other nervous system. Source: American Cancer Society, 2008.

4. Treating Cancer: It Requires Multiple Disciplines Medical Oncologist Surgical Oncologist Radiation Oncologist Special surgeons: ENT, urology, gynecology, plastics, neurosurg. Radiologist Pathologist Primary Care Physician Genetic counselors Other specialties: dermatology, GI, pulmonary,cardiology Oncology nurses Clinical trial/research team Chaplain/spiritual Physical/occupational therapy Psychologist/Psych. Social worker Navigators/educators Nutritionist Palliative Care team

5. Cancer Numbers • One out of two men and one out of three women will be diagnosed with cancer during their lifetime • Over 10 million survivors in USA • Over 2 million of these are breast cancer survivors • The side effects and complications of treatment do not always end with the treatment • Who is responsible for the post cancer treatment care?

6. Cancer Survivorship • 2005: Institute of Medicine (National Academy of Science) published “ From Cancer Patient to Cancer Survivor: Lost in Transition” by M. Hewitt et al • Lack of adequate follow up measures and symptom management • 2011/2012: Commission on Cancer requires the development of survivorship care plans • American Society of Clinical Oncology (ASCO) • Development of treatment plans, care guidelines • Pediatric oncology has been doing this for years

7. Proposed Resources • Development of cancer survivor clinics with a focus on long term health goals • Revisiting Cancer Rehabilitation programs • Expanding to include more wellness • Developing care plans for primary care physicians and others to utilize for long term medical management

8. The Challenges of Care Plans • There are two main types of care plans • Outline of cancer stage and treatment received • Guidelines for follow up testing and surveillance after treatment is completed • There is no evidence to confirm that surveillance/post treatment guidelines make a difference in patient care • To be useful, it needs to be integrated in to the electronic medical record

9. Do post treatment guidelines and care plans make a difference? • Hope to use the best evidence for when and when not to perform tests • Provide security for patients • Provide security for primary care physicians and others • Provides a comprehensive care plan for all disciplines • ? Where is the evidence ?

12. Follow up guidelines • Yearly mammograms • Controversial: mammogram of flap reconstructions • Physical exam and extensive questions by health care provider • No data to support yearly xrays, bone scans or lab work • See ASCO follow up guidelines on www.cancer.net

13. Breast Imaging • The standard of care remains mammography • There is no data on the value of MRI in the breast cancer survivor • The exception is the patient with BRCA gene or significant family history • Ultrasound complements mammography • Breast reconstruction • Implant: some manufacturers suggest MRI to look for leakage NOT cancer • Flap reconstructions: some suggest limited mammography

14. Breast Cancer Survivor Topics • Recurrence fears • Fertility • Sexuality • Cognitive dysfunction • Fatigue • Self image/esteem • Weight control • Menopause management • Cardiac complications • Bone marrow complications • Pain • Neuropathy • Pain at surgical sites

15. Fear of Recurrence • No perfect test to confirm that a patient is cancer free • PET scan only sensitive to 7 mm • No ideal blood test: CA 27-29 should not be used for asymptomatic screening • The current approved guidelines for breast suggest mammogram if appropriate at yearly intervals • Different cancers have different fear levels • Patients are increasingly educated • Media news can cause anxiety • Fear of abandonment (by medical staff) as years go by

16. Managing Fears • Listen to the patient • If something persists then test but realize that “peace of mind” testing often leads to more testing and has it limitations • If something does persist, tests may be appropriate (pain, unusual headache, etc.) • Counseling with/without appropriate medications is suggested if patient remains overwhelmed and unable to enjoy life • Recurrence fears can be disabling

17. Survivor Guilt • Stress can be exacerbated when other patients develop recurrence and/or die particularly if they have been supporting each other (formally or informally) • Often a challenge for support groups • “Am I going to be next?” • “ Why not me? Why me?”

18. Stress, Relationships, etc. • Depression • Not uncommon; use appropriate medications and counseling • Caregiver fatigue • Stress on relationships • Several small surveys report increased divorce rates in breast cancer patients • Partner may fear they will hurt patient • Partner may fear losing their loved one and have their own coping difficulties

19. Cognitive Changes • It has been recognized that many patients have cognitive changes during treatment • The causes have not been clearly identified • Most often associated with chemotherapy • Recent meta analysis found statistically significant changes for 6 + months after chemotherapy completion • JCO (2012:30:3578-3587)

20. Cognitive Changes.. • The most common deficits described are: • Verbal memory-word finding • Visuo-Spatial ability-getting lost, ability to multitask • JCO (2012:30) • What may help: • Adequate rest and sleep • Limit multitasking • Time-most deficits significantly resolve after 1 year • This area needs more research to determine who is at risk and what potential interventions are appropriate

21. Being Male • Less than 2000 new cases of male breast cancer in the US per year • Treatment is the same including surgery, chemotherapy, hormonal therapy and radiation therapy • Support groups are limited since the numbers are smaller but there has been national attention due to a national spokesperson

22. Being Female • Multiple issues may affect self image and self esteem • Appearance • Surgical deformities • Loss of breast as a sexual part • Lack of hair • May be particularly difficult for single survivors looking for partners

23. Being Female • Loss of libido • Due to menopause • Due to chemotherapy • Due to fatigue • Due to hormonal therapies for cancer • Due to depression and its medications • Concerns about estrogen replacement products and potential consequences

24. Sexuality and Fertility • Fertility discussions should happen before treatment starts • There is usually time • Refer to a fertility expert • It is not possible to preserve fertility in all women • Fertility may be adversely impacted by surgery, chemotherapy or hormonal manipulations • Aging also a significant factor

25. Fertility and Family Planning • Embryo cyropreservation • Timing and costs are big barriers • Lack of committed partner may also be barrier • Ovary/ovum preservation • Results are not satisfactory yet • Continued debate regarding the use of GNRH agonists to shut ovarian function down during chemotherapy

26. Contd. • Refer to specialist for urological or gynecologic issues • May need counseling to reaffirm self worth and/or to support relationships • Those who desire children may have other challenges • Many adoption agencies will not consider cancer survivors as parents for several years after diagnosis if at all.

27. Cardiac Toxicity • Heart failure can occur any time after treatment. May manifest years later • Drugs putting patients at risk: doxorubicin, epirubicin, fluoropyrimidines, trastuzumab • Radiation to left chest wall increases risk • Less of a problem with newer techniques and planning

28. Cardiac … • Radiation therapy to left breast, left chest wall or to mediastinum • Increased risk of cardiomyopathy and failure • Increased risk of pericarditis • Increased risk of pericardial sac fibrosis

29. Other Complications • Thyroid problems: after radiation therapy to mediastinum or neck-uncommon with breast cancer • Check thyroid function; may develop years later • Dental problems from radiation or chemotherapy • Gingivitis: good hygiene, see dentist • Xerostomia: several saliva substitutes • Osteonecrosis: limit bisphosphonates • Cataracts: from steroids, tamoxifen • Ophthalmology

30. Secondary Cancers • Acute leukemia or myelodysplasia • Due to chemotherapy esp. alkylating agents • Due to radiation therapy esp. to major marrow • Original cancers: breast, prostate, lymphoma, others • Breast Cancer • Due to radiation therapy to mediastinum for childhood or adolescent lymphoma • Soft tissue Sarcoma • Due to radiation therapy (usually for breast ca) • Endometrial Cancer • Due to tamoxifen used to treat breast cancer

31. Employment, finances Many resources for support and counseling LINC /Medical Legal Partnership Often cannot qualify for disability Fatigue May take months to recover from treatment Check thyroid, blood sugars, etc. Physical appearance changes Hair loss (may fail to regrow) Breast removal with/without reconstruction Stress

32. Pain • Neuropathy • Side effect of many chemotherapy agents including taxanes and vinca drugs • May persist for years • Post surgical pain • Post radiation therapy pain

33. Pain Control • Recognize pain • Appropriate interventions • Short term narcotics for postoperative pain • Medications for neuropathic pain; often due to chemotherapy • Referral to symptom management specialist as needed • If pain is persistent or doesn’t make sense then do appropriate imaging

34. Other Physical ChangesLymphedema • Risk increases with extent of lymph node dissection, obesity and radiation therapy • Refer to therapist who has had specialized training • Early intervention is best • Often patient feels the difference before it is visible • Exercise restrictions have been lifted

35. What is the survivor to do? • Exercise MOVE IT! • Obesity especially after menopause may increase cancer risks • Minimum 3 hours a week; more is better • Some drugs make it more difficult to control weight but not impossible • Many women gain weight during chemotherapy • Need to exercise even during treatment • Impact on cancer recurrence is still under study but looks positive

37. Diet and Nutrition • There is no magic anticancer diet • Well balanced diet with fruits, vegetables, grains, lower fat, good proteins • No proven benefit of supplements or vitamins • Limit alcohol consumption • Women should consume one or less alcoholic beverages per day • Soy products have been controversial but more studies suggest they are safe and okay as part of a healthy diet

38. Complementary and Alternative Medicine • The internet and the media are full of information and claims • Some things make sense • Yoga, massage, meditation for stress relief • Some things are concerning • Bioidentical hormones • Drastic dietary changes • Supplements of unknown risk/benefit

39. CAM.. • Ask patients what they are taking or are considering taking • Several major medical centers have integrative medicine programs with a focus on CAM • Suggest these to patients • Memorial Sloan Kettering, MD Anderson, National Institute of Health/NCI • Remind patients about costs, evidence and potential for toxicities

40. The Reaction to Pink

41. A word of warning • She may not like pink • She may not like (pink) ribbons • She may lose sleep every time the words “breast cancer” are on the news • She may wonder where the $$$ from “pink” goes • She may wonder with all of the attention and $$$, why is she not cured?

42. Resources • www.cancer.net ASCO patient information site • www.cancer.org and local chapter of American Cancer Society • www.cancer.gov National Cancer Institute • www.masseycancercenter.com • www.livestrong.com • Several websites for survivors

43. VCU Massey CancerBreast Health Center • New patient coordinators: (804) 828-5116 • Medical and surgical oncology appointments • Breast Imaging: (804)237-6666 for either site • www.breastimaging.vcu.edu • Radiation Oncology: (804) 828-7232 • Will direct to any site • Breast Health Nurse Navigators: (804)828-5024

44. Thank you! Questions???