Dr. Christina Pozo-Kaderman of Sylvester Comprehensive Cancer Center presented "Cancer Survivorship" at the 2011 WellBeingWell Conference in Miami.

1. Cancer Survivorship Christina Pozo-Kaderman, Ph.D. Administrative Director of the Courtelis Center for Psychosocial Oncology

2. Cancer Survivorship “Cancer Survivor” is the term used to include anyone who has been diagnosed with cancer, from the time of diagnosis through the rest of his/her life. 1 out of 3 will be diagnosed with cancer Nearly 12 million cancer survivors in USA

3. The feelings at the end of cancer treatment are as unique as each individual survivor, but there are some commonalities.

4. How Survivors Often Feel “I still worry about every lump or pain.” “The days leading to my mammogram, my anxiety is off the chart.” “Everyone in my family just wants things to go back to normal, but it’s different for me.” “I feel like I’ve been walking on eggshells for 5 years. Now I’ve passed this mark and I still don’t feel safe.”

5. What Survivors Often Hear “It’s over. Now forget about it and go back to the way you were.” “You are so lucky that it was caught early.” “But you’re cured. What more do you want?” “Don’t be negative. You must think positive. You’re going to be just fine.”

6. Post-Treatment Mixed Feelings Access to oncology team decreases Fear of Recurrence Learning to decipher symptoms Returning to “normal” life Family, work, social, sexual Social support diminishes Insurance Deal with feelings put on hold during treatment

7. Post-Treatment Possible Physical/Psychological Effects of Treatment Fatigue Weight Changes “Chemo Brain” Menopausal Symptoms Sexual Changes Feelings – Fear, anxiety

8. Fatigue Is an overwhelming sense of exhaustion that Is unrelieved by sleep or rest Is disproportionate to or unrelated to activity Has a profound impact on quality of life Doctors do not know the exact causes Causes of fatigue during treatment are different than for post treatment

9. Fatigue in Breast Cancer Survivors 34 % of women report symptoms of fatigue up to 10 years after diagnosis Factors associated with fatigue Depressive symptoms Pain control problems Heart disease & high blood pressure Tx with Radiation & Chemotherapy Bower et al., 2006

10. Fatigue Management Fatigue Check for physical causes and/or medications Diet and drink plenty of fluids Exercise Pacing yourself Relaxation/Imagery Keep diary to see when most energetic Music Ask for help with tasks

11. Weight Gain After Breast Cancer Many women gain weight during and after chemotherapy Not sure of causes? Decreased physical activity? Hormonal changes? Increased eating due to anxiety? Average weight gain is 5-8 pounds Journal of Clinical Oncology 2002: Increased risk of recurrence for overweight/obese survivors JAMA 2005: Women exercise 3-5 hrs a week less likely to die of breast cancer vs. women exercise < 1hr

12. “Chemo Brain” 1 out 4 people with cancer report attention/memory problems after chemotherapy Not sure of cause (s) Some research has now documented actual changes in tests performance and PET scans among breast cancer patients who received chemo vs. those who did not Silverman, et al., 2006.

13. “Chemo Brain” Memory difficulties may be related Higher doses of chemotherapy Chemotherapy and/or radiation to the head area Medications Anxiety and/or depression Going through menopause But in general not sure of causes

14. “Chemo Brain” May need a neuropsychological evaluation Write notes to yourself Repeat what you want to remember Review information and talk yourself through it Break information down into chunks, e.g., numbers Leave reminders around the house Manage stress

15. Sexuality in General Population 1 out of 3 women report low sexual desire 40% of women report decreased libido during menopause Levels of testosterone of women in their 40’s are half of the those of women in their 20’s

16. How Is Your Sex Life Lately? 81% of breast cancer survivors never asked about sexual issues by healthcare providers McCaughton, 1997

17. Sexual Functioning: Breast Cancer At 1 year 33% sexual problems compared to 8% of controls(Anderson & Lamb, 1995) 40% of sample of breast cancer survivors reported adverse effects to their sexual life(Meyerowitz, 1979) Dyspareunia was reported in 57% of sample of breast cancer survivors having undergone chemotherapy(Schover et al., 1995) 60% of sample of breast cancer survivors reported decreased interest in sex Painful intercourse reported at 11% before and 44% after tx (Lindley et al, 1998)

18. Sexuality After Gynecologic Cancer Ovarian Cancer Survivors More than 50% cancer negative impact of sexual life 75% sex lives poor to adequate Cervical and Endometrial Cancers 31% to 88% sexual problems especially if had radiation

19. Prostate Cancer Nerve Sparing less likely ED, may slowly return (up to 2 years) Nerve Sparing depends on size and location of tumor 50% of men have ED before surgery Seed Implants less likely ED than external beam and radical prostectomy External Beam XRT gradual loss may occur Younger (less than 60) and erectile function pre surgery better results

20. Treatment Options for ED Medications: Viagra, Levitra, Cialis Injections: alprostadil or papaverine Pellets of alprostadil Vacuum Pumps Penile Prosthesis Better results with injections and penile implants, yet men less likely to try these

21. Medications for ED

22. Colon/Rectal and Bladder Cancer (Ostomies) Careful how much you and eat and what you eat (or drink) Change ostomy pouch even if not 1/3 full Make sure pouch is empty and flat If discomfort, change positions Deodorant for pouch? Special pouch covers

23. Medications and Sexual Functioning Anticancer Drugs: Chemotherapy Endocrine Drugs Antihypertensive Diuretics Neuroleptics Allergy Meds Antidepressants Narcotics Alcohol

24. MENOPAUSE AFTER BREAST CANCER Menopausal women diagnosed with breast cancer are asked to immediately discontinue hormone replacement…menopause symptoms may return Zoladex : premature menopause Aromatase Inhibitors: Joint/muscle pain, fatigue, decreased sexual desire Tamoxifen:Possible side-effects vary by age

25. MENOPAUSE AFTER BREAST CANCER Chemotherapy: premature menopause Higher doses: permanent menopause Alkylating agents The older you are, the more likely menopause will be permanent Women under 40yo-------25 - 40% Premature Menopause Women over 40yo---------76 - 90% Premature Menopause

26. MENOPAUSE Decrease in estrogen and testosterone levels Hot Flashes Vaginal Dryness/Pain/Tightness Changes in Mood Fatigue Memory Changes Sleep Difficulties Decreased libido (sexual desire)

27. ENHANCING YOUR SEXUALITYHOT FLASHES Stay hydrated and carry water spray bottle Antidepressants Effexor, Celexa, Lexapro May help with hot flashes (also with mood, sleep, fatigue) Therapeutic doses may be lower than for depression (less likely to have sexual side-effects)

28. ENHANCING YOUR SEXUALITYHOT FLASHES Exercise Relaxation Exercise (Meditation) Diet Herbal Acupuncture Neurotin Avoid: Caffeine, Alcohol, Tobacco, Individual triggers (e.g., spicy foods, clothing)

29. PREDICTORS OF SEXUAL DYSFUNCTION Main predictor Vaginal dryness Emotional Well-Being Body-Image Quality of Relationship Ganz,1999

30. ENHANCING YOUR SEXUALITY If vaginal dryness/pain Vaginal lubricants (water based) Moisturizers (Replens, Silken) Replens draws water out of cells into vaginal lining Can be as effective as estrogen cream Lubricants (Astroglide, K-Y Jelly) Suppositories (Lubrin, Condom Mate)

31. ENHANCING YOUR SEXUALITY If vaginal dryness/pain: Drink lots of water Check Medications Avoid douches Avoid feminine hygiene sprays Avoid perfumed soaps Deodorant panty liners

32. ENHANCING YOUR SEXUALITY Marinol ? Viagra, Levitra, Cialis ? Wellbutrin (to deal with AD side-effects) Herbal ?

33. New Medications Being Researched Flibanserin: sexual desire and arousal for premenopasualwomen, nonhormonal? Ophena : vaginal atrophy, nonhormonal? Bremelanotide: sexual desire/arousal, men and women, works via CNS? LibiGel: gel formulation of testosterone, sexual desire for women? Luramist:testosterone, transdermal spray? Intrinsa:testosterone sexual desire women?

34. Exercise Several studies have shown that increased physical activity and/or exercise is beneficial in terms of sexual functioning for both men and women Annals of Beh Medicine 1999, Urology 2005, Cancer 2004.

35. ENHANCING YOUR SEXUALITY COMMUNICATE WITH YOUR PARTNER Get comfortable with yourself and changes Give yourself time to get in the mood Listen to relaxing music Touch, hold hands, dance, kiss, tub bath Watch a sexy/erotic movie Gentle touching, extra time for foreplay Sensual touching with massage, foot rub

36. ENHANCING YOUR SEXUALITY Try to keep an open mind about ways to feel sexual pleasure/positions/experiment Self-stimulation/Vibrator No matter what, most people enjoy being touched Kegel exercises Be patient with yourself Limit touching, if painful (communicate) Keep sex in perspective

37. Feelings Most early stage breast cancer patients adjust well after treatment. Some studies show that 20-40% report feeling depressed, anxious or both 1 year post-treatment. By the second, third and fourth year 25% report distress and by the fifth year 15%. Moderate levels of distress reported by most on cancer specific concerns. * Burgess et al., 2005

38. Managing Cancer Anxiety Acknowledging that it is normal to have some anxiety of cancer recurrence, especially on anniversary dates, when someone recurred. Don’t neglect your healthcare. Have a plan. Discuss your feelings and worries with friends, support group or other cancer survivors. Learning to decipher physical symptoms

39. Managing Cancer Anxiety Stress is part of life. Even positive life events stressful, e.g. marriage, new job, new home, birth of child. Stress management, e.g., exercise, meditation, humor, painting, whatever works for you. Finding some meaning to cancer experience. Know that anxiety gradually improves over time, cancer will not always be the center of your life…recedes to the background. Use your anxiety as a reminder to appreciate life. If your anxiety continues and interferes with quality of life seek professional help.

40. Post-Treatment Adaptation to Breast Cancer In comparison with women with benign breast disease, women with breast cancer report: Improvement in their outlook on life Enhanced interpersonal relationships Deeper religious and spiritual satisfaction Andrykowski et al, 1999