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Third Annual Early Age Onset Colorectal Cancer Symposium - Navigating The Survivorship Landscape


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An Interactive Discussion On Key Issues Affecting Young Adult Colorectal Cancer Patients and Their Caregivers
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Third Annual Early Age Onset Colorectal Cancer Symposium - Navigating The Survivorship Landscape

  1. 1. Navigating The Survivorship Landscape – Moderated By Martha Raymond, MA CPN Course Co-Director Executive Director Michael’s Mission, The Raymond Foundation
  2. 2. Navigating The Survivorship Landscape – Navigating Intimacy Sage Bolte PhD LCSW OSW-C CST, Executive Director Life With Cancer Inova Scar Cancer Institute
  3. 3. Navigating Intimacy: The impact of cancer on the sexual self Sage Bolte, PhD, LCSW, OSW-C, CST Executive Director Life with Cancer Inova Schar Cancer Institute Fairfax, VA
  4. 4. What to Expect • Define the sexual self • Identify the impact of colon/rectal cancers on the sexual self • Identify at least three ways to improve sexual function/sexual self • Questions
  5. 5. 1. Information or Event: External events that affect sexual function or affect aspects of sexuality (e.g., disfigurement, positive sexual experiences, etc.) 2. Sexual Esteem: Cognitive, Attitudes, Sexual Schemata 3. Sexual Affect/Feelings: Feelings about sexuality and function: Includes distress or negative/positive. CANCER The Experience of Cancer can bring multiple events New information has to be absorbed into the sexual self. The sexual self could stay stable, or could experience a large effect. 4. Sexual Behavior and Function (Bolte, 2010)
  6. 6. Prevalence of Interruption to Sexual Self • Sexuality can signify: • “I am alive” • “I am human” • Acceptance and validation by partner • Resuming intimate relationships is one way of feeling that life has resumed to ‘normal’ again - Importance of control • Forty-one percent of all cancer survivors experience a decrease in sexual functioning and 52% experience changes in body image • In colorectal cancer, the rates of sexual dysfunction can be even higher given the physiological changes that can result from surgery, chemotherapy, and radiation therapy • 10% – 100% of patients will experience some form of sexual dysfunction after cancer treatments
  7. 7. We need more research • Women who had abdominoperineal excision (n=73) for rectal cancer were less sexually active, had less frequent coitus, and were less likely to achieve arousal or orgasm than women who had anterior resection (n=222) (Tekkis PP, Cornish JA, Remzi FH, et al, 2009) • one study found that total mesorectal surgery (n=49) affected erection (80%) and ejaculation (82%), while another study by Sartori and colleagues (2011) found less impact on erection and ejaculation (n=35) (Nishizawa Y, Ito M, Saito N, et al, 2011). • Other studies say that a stoma creation does not negatively impact sexual function or at the very best have shown mixed results on impact
  8. 8. Intimacy • “Intimacy can be defined as a reciprocal relationship in which innermost thoughts and feelings are shared…can include such areas as sexual or emotional…” The International Journal of Psychosocial Rehabilitation, 2001
  9. 9. Sexuality and Intimacy are not life or death issues but are very real quality of life issues
  10. 10. How do colorectal cancers impact sexuality and intimacy? Treatment Side Effects Emotional Side Effects
  11. 11. Factors that Contribute to Sexual Challenges 1) the cancer 2) psychological distress (including partner) 3) cancer therapy 4) side effects & long term effects 5) alterations in relationships *some content developed collaboratively with D. Kathryn Tierney, RN, PhD, Oncology Clinical Nurse Specialist, Stanford Health
  12. 12. Physiologic changes Radiation therapy Chemotherapy Surgery Vascular, sensory, and continence Vascular scarring—decreased genital blood flow (erection dysfunction; decreased vaginal lubrication) Change in senses—taste bud changes; increased sensitivity to smells; peripheral neuropathy changes sensation of touch Urinary/fecal incontinence—type of surgery affects risk Skin changes Skin changes—texture/color changes can affect body image; can remind partner of patient’s diagnosis. Although tattoos are small, they can be a reminder to the patient or partner of diagnosis Skin sensitivity changes—some chemo causes extreme reaction to cold which affects food that can be eaten on dates; neuropathy affects enjoyment of skin touch; hand/foot (palmar/plantar) syndrome can affect enjoyment of activity with partner/affect ease of touching partner if skin peeling off hands; skin rash can occur; affect color of nails Surgical scars—body image changes; affect partner’s ease in being with patient Fatigue Affects social interaction, libido Affects social interaction, libido Affects social interaction, libido Vaginal vault changes Shortening of vagina; decreased lubrication; risk of dyspareunia; vaginal stenosis Decreased lubrication; risk of dyspareunia; increased risk of vaginal infection from tiny tears; Mucositis— can affect oral or vaginal cavity Postoperative adhesions if they occur do not usually affect the vaginal vault unless surgery was done in that specific location Sexual pattern alterations If fatigue, may need to change usual positions or time of day for activity; affect spontaneity; if decreased lubrication will need to use artificial lubricant to avoid tears and possible infection; if XRT causes diarrhea, will affect usual pattern if apprehensive re: fecal incontinence If nausea/vomiting, will decrease desire; affects dating pattern; if taste bud changes, may avoid French kissing/oral stimulation; if fatigue, may need to change usual positions or time of day for activity; affect spontaneity; if decreased lubrication will need to use artificial lubricant to avoid tears and possible infection If stoma will need to remember to empty appliance prior to sexual activity; perhaps wear cover on appliance to prevent it ‘sticking’ to body; if patient irrigates, may decide to do prior to activity so can wear smaller ‘security pouch’; change in usual position so appliance can lie to the side; if waterplay activity part of sexual pattern may want to irrigate, prior so do not have to wear appliance; avoid ‘gassy’ food on date or use ‘gas filters’; loss of rectal sexual pleasuring if rectum removed Nerve damage Skin sensitivity decreased; decreased vaginal lubrication/erection dysfunction Skin sensitivity decreased; decreased vaginal lubrication/erection dysfunction Skin sensitivity decreased; decreased vaginal lubrication/erection dysfunction
  13. 13. Physiologic Changes Radiation Therapy Chemotherapy Surgery Urethral irritation Depends on radiation treatment field Hormonal changes may cause thinning and inflammation of tissues around the vaginal opening; if using spermicidal as birth control, can cause urethral irritation None Hair pattern Alopecia—(only of site of radiation treatment) affects body image; daily reminder of treatment/diagnosis; if loss of pubic hair may be pleasurable OR may be emotionally upsetting to pt or partner if pt feels ‘childlike’ Alopecia/hair thinning—affects body image; if single, may affect desire to date; daily reminder of treatment/diagnosis; if loss of pubic hair may be pleasurable OR may be emotionally upsetting to pt or partner if pt feels ‘childlike’ Alopecia/hair thinning—none Fertility impact Location/dose affect risk; premature ovarian failure Type/dose affect risk Usually not for colorectal cancer; abdominal adhesions can increase risk of female infertility post-tx; pelvic exenteration (hysterectomy); A/P resection = retrograde ejaculation Fear of recurrence Impacts libido of patient and/or partner Impacts libido of patient and/or partner Impacts libido of patient and/or partner Delayed complications Risk of fecal or urinary incontinence due to fibrosis (risk factors for postoperative incontinence included preoperative incontinence, female gender, perioperative blood loss, preoperative bladder emptying difficulties, autonomic nerve damage, and presence of a permanent stoma) Peripheral neuropathy may be permanent and it can affect sensations/enjoyment; taste bud changes may be permanent and will affect sexuality Adhesions can cause pelvic pain during coitus; nerve damage may be permanent and affect sensations
  14. 14. Side Effects of Treatment • Surgery: – Physical change: Scarring, Stoma, Disfigurement – Anorgasmia – Sensation changes – Incontinence – Pain – Lymphedema • Radiation: – Fatigue – Vaginal Dryness – Skin discomfort, irritation and discoloring – Vaginal Stenosis – Bowel & Bladder problems – Infertility if radiated in pelvic region or had whole body radiation
  15. 15. Surgical: Resection of bowel or rectum • In women, if the rectum is removed, there may be a different feeling in the vagina during intercourse. It may be uncomfortable, as the rectum no longer cushions the vagina. • In men, creating a stoma can involve removing part or all of at least one organ in the pelvic area. This may affect the nerves controlling erections. • Sexual and Urinary dysfunctions can occur – Complications or resection for colon and rectal cancer – Surgery and/or radiation can affect lack of desire and ability to respond if autonomic nerves in pelvis are damaged – Lead to erectile dysfunction in men or diminished orgasm in women - often treatable by medication – Urinary problems - incontinence • If permanent stoma, emotional / image concerns affect sexuality
  16. 16. Side Effects of Treatment • Chemotherapy: – “Chemo Brain” – Hormone changes/Menopause/Libido changes – Hair Loss – Nausea – Vaginal Dryness & changes in the vagina’s integrity – Peripheral neuropathy – Mucositis / Mouth problems – Infertility possible – Pain – Cardiac and Respiratory problems
  17. 17. Impact of Side Effects on Heart & Body • Many medications we prescribe to help with mood and pain can further interfere with desire and sexual response. • Loss of libido (emotional and physical) • Surgery & skin irritation that can alter previous sexual desires or routines • Fatigue • Loss: Fertility, feelings of sensuality, role changes • Negative self perception (hair loss, scars, role change, etc)
  18. 18. Impact of Side Effects on Heart & Body • Changes in Social Life & Activities – Challenging to reconnect after the fear of getting sick or being infected or – Withdrawal - both emotional and physical – Opportunity to reevaluate “toxic relationships” • Role changes within intimate relationships – positive and negative • Faith may be challenged or enhanced • May have a greater appreciation for various things • Other quality of life issues – Anxiety, depression, nutrition – Smoking and alcohol use can also affect erection difficulties and lack of interest
  19. 19. Now What? Questions and Answers to Common Concerns Options to improve matters of the heart and body
  20. 20. Low Sexual Interest / Low Desire • counseling and education – address relationship issues – explore/evaluate expectations • assess and treat – rule out medical causes/contributions – anxiety, depression, body image changes – other sexual dysfunctions – SSRI’s (Wellbutrin) • “use it or lose it” • discuss discrepancies in desire if with a partner(s) – Couples based work is most effective if partnered
  21. 21. Low Sexual Interest / Low Desire • cognitive behavioral therapy – cognitive restructuring and communication training • i.e. “I’ll never be the same” to “Life will be different, and I have the resources I need to find new ways of satisfaction” – expectations: • From body to mind • erotic focus • other ways of sexual connection/play – relaxation training – sensate focus exercises – Re-explore pleasurable body experiences alone – Kegel exercises – “Teasing” exercise
  22. 22. VulvoVaginal Dryness and Pain • It is possible that the vaginal canal has shrunk and dilator therapy may be appropriate, can use a dildo or vibrator as well • Consult with your gynecologist or a PT who specializes in pelvic floor exercises • topical or systemic estrogen • vaginal lubricants – Internal moisturizers – External lubrication (check glycerin & paraben free) i.e. Wet®, Astroglide®, Sylk® (organic) – Organic yogurt, Vitamin E, Olive/Coconut oils
  23. 23. VulvoVaginal Pain • vaginal dilators • Eros-C • Mona Lisa Touch™ treatments • intravaginal dehydroepiandrosterone (DHEA)  RCT showed improvement is sexual functioning • assume a position during intercourse to allow control of rate and depth of penetration • prolong foreplay • non-penetrative sexual activity
  24. 24. Erectile Disorder • Have medications reviewed and assessed • Have hormones tested • Assessed by Urologist and Endocrinologist • Vacuum pumps, PDI5 inhibitors, Muse/Caverject • Anxiety , Depression, low body image can contribute to or create ED • Sensate focus exercises
  25. 25. “I don’t feel attractive” • Identify the many areas that haven’t changed • Use appropriate ostomy care and covers (have sport covers, water proof and feminine covers) • Include good nutrition and exercise to help how you feel about yourself • Make an appt with a social worker or counselor • Be patient with the physical effects, as you get well you will feel well and look better • Cancer may have changed how you look, but it does not have to change how you feel about yourself • Practice positive affirmations daily
  26. 26. Fear of Rejection • When do I Disclose?: – role play with a friend – discuss story in multiple settings – educate self on implications of treatment on sexuality & fertility – identify intimate relationships in which you would feel comfortable asking questions, sharing their story, showing their scars, etc. • What if my partner isn’t interested? – Self pleasure – Remember most of the time it isn’t about you – Couples counseling / Sex Therapist – Communicate about your needs, maybe there is underlying fear or anxiety on their part (Fact, Belief, Feeling, Action) • What if I don’t have a partner? – Self pleasure – Surround yourself around people who “fill you up”
  27. 27. “What about my stoma?” • Wear an opaque pouch or pouch cover • If your colostomy/ileostomy requires irrigation, complete before sexual activity – wear a closed-end pouch, a mini/’security’ pouch or stoma cap during sexual activity – if waterplay activity part of sexual pattern may want to irrigate, prior so do not have to wear appliance • Worry about the bulk of the appliance – Use a fancy cover – Crotchless panties or camisole for women – Tuck it in to a cummerbund, belt, sash or fancy slip, or wear a fitted tshirt to hide or hold close to body – Make sure appliance fits well – Tape it down carefully during activity
  28. 28. “What about my stoma?” • Worry about gas or watery discharge – Check and empty pouch just before sexual activity – Avoid food that may cause strong odor or gas • Choose a position for sexual intercourse that protects your stoma to keep weight off pouch • Assure your partner that the stoma will not get hurt during sexual activity to lower anxiety • Make sure your partner and you remember that gas is natural !!
  29. 29. Additional Tips to Strengthening Sexual Self • Go slow and get to know your own body again first! • Kegel exercises • Time of day • Altering positions • May require redefining your expectations (as well as your partners). – Pleasure without intercourse – Other forms of stimulation • Awareness and education around lack of rectal stimulation if rectal play is important • Work with certified sex therapist (
  30. 30. Maintaining intimacy • Choose wisely: – Get rid of (and avoid)any toxic relationships. These are not helpful to your physical or emotional health. – Surround yourself with individuals who you are able to be honest with and who provide you the support you need • Ask, if your needs are not being met – (i.e.) “It’s not helpful when you say to me ‘everything is going to be okay’ or ‘everything happens for a reason’, what I need is for you to listen or to tell me this frustrates you too” • Educate, tell them what your “new normal” is
  31. 31. Maintaining Intimacy • Honesty and Communication – Fact, Belief, Feeling, Action • Allow friends to help, assign them tasks • Schedule time with friends and family on your “on” time (this may change and may last long after treatment is done) • Change social setting to be conducive with your needs • Meet with a spiritual advisor or friend who can support you and just “let you be”
  32. 32. For the Couple • Go back to the basics: create the mood, go slow, romantic movie, dinner, etc. • Changing Sex Positions – Experimenting with different positions may decrease anxiety – Allow yourself to get creative…create your “new normal” • Find other ways to be sexual: sometimes being naked together is the most intimate experience • Communicate, communicate, communicate…we don’t read minds! • Remember that problems before cancer don’t magically disappear during/after cancer • See a therapist to help work through road blocks • For those with children – Take time out for one another – Laugh with your children – Show affection in front of them
  33. 33. Resources “Many patients describe the worries you are expressing about being intimate again.” “Yes, this is so normal. Here are some resources that might be helpful”
  34. 34. Celebrate Matters of the Heart and Body • First and foremost – be patient and gracious with yourself (same goes for the partner/friends/family) • Schedule a “date” or time with friends • Take a weekend trip or throw a party after treatment to celebrate your survivorship • Be positive (this doesn’t mean you have to like cancer), add humor to your life • Find ways to enhance your spirit: Meditation, prayer, walks, exercise, friendships, etc. • Find various ways to feel more sensual and/or sexual
  35. 35. Repetition is the key… • You have control over who you surround yourself with • Communicate about your needs • Appropriate timing of activity may increase enjoyment of all activities! • Get creative • Sex is not the only form of intimacy • Patience and a sense of humor is a must • Skin is the largest sex organ and the brain is the most important sex organ – the possibilities are limitless!
  36. 36. You can find peace in your sexual body…
  37. 37. “…Intimacy need not end with cancer. You may need to redefine your ways of expressing intimacy, and you may need to experiment because what worked before may no longer work after cancer” – Mayo Clinic Staff, 2003
  38. 38. Resources • sexual health resources • : National Cancer Institute • : ACS, sexuality, fertility, managing side effects • and LGBTQIA resources • • : Cancer supportive care information • : • treatment/page9#TalkingAboutSexualNeeds: National Cancer Institute • : Colon Cancer Alliance • : CM Ostomy Supply • For Young Adults •
  39. 39. • Tekkis PP, Cornish JA, Remzi FH, et al. Measuring sexual and urinary outcomes in women after rectal cancer excision. Dis Colon Rectum 2009;52:46-54. • Nishizawa Y, Ito M, Saito N, et al. Male sexual dysfunction after rectal cancer surgery. Int J Colorectal Dis 2011;26:1541-8. • Sartori CA, Sartori A, Vigna S, et al. Urinary and sexual disorders after laparoscopic TME for rectal cancer in males. J Gastrointest Surg 2011;15:637-43.
  40. 40. Thank you! Questions?
  41. 41. Navigating The Survivorship Landscape – Preserving and Optimizing Fertility Terry L. Woodard MD The University of Texas MD Anderson Cancer Center Elyse H. Cardonick MD FACOG Cooper University Health Care
  42. 42. Fertility Preservation and Family Planning for Patients with Colorectal Cancer Terri Lynn Woodard, MD Assistant Professor Director, MD Anderson Oncofertility Service Department of Gynecologic Oncology and Reproductive Medicine The University of Texas MD Anderson Cancer Center Division of Reproductive Endocrinology and Infertility Baylor College of Medicine
  43. 43. Why is this important? • Survivors want to have children (Schover, 1999) • Significant cause of distress (Canada & Schover, 2012) • Tenet of holistic and comprehensive care • It is the right thing to do Lee SJ, Schover LR, Partridge AH, Patrizio P, Wallace WH, Hagerty K, Beck LN, Brennan LV, Oktay K; American Society of Clinical Oncology. American Society of Clinical Oncology recommendations on fertility preservation in cancer patients. J Clin Oncol. 2006 Jun 20;24(18):2917-31. Canada AL, Schover LR. The psychosocial impact of interrupted childbearing in long- term female cancer survivors. Psychooncology. 2012 Feb;21(2):134-43.
  44. 44. American Society of Clinical Oncology Recommendations on Fertility Preservation in Cancer Patients “As part of education and informed consent before cancer therapy, health care providers should address the possibility of infertility with patients treated during their reproductive years and be prepared to discuss possible fertility preservation options and/or to refer all potential patients to appropriate reproductive specialists. Although patients may be focused initially on their cancer diagnosis, the Update Panel encourages providers to advise patients regarding potential threats to fertility as early as possible in the treatment process so as to allow for the widest array of options for fertility preservation. Loren AW, Mangu PB, Beck LN, Brennan L, Magdalinski AJ, Partridge AH, Quinn G, Wallace WH, Oktay K; Fertility preservation for patients with cancer: American Society of Clinical Oncology Clinical Practice Guideline Update. J Clin Oncol. 2013; 31:2500-10.
  45. 45. Threats to Fertility • Depends on age • Depends on baseline fertility status • Depends on treatment – Surgery – Chemotherapy • Alkylating agents • CRC agents – 5-FU, Oxaliplatin – Radiation • Cranio-spinal • Abdominal • Pelvic • Total body
  46. 46. Thinking about options Before (fertility preservation) vs. After (working with what you have) PATIENTS AWAITING STEM CELL TRANSPLANT PATIENTS WHO RELAPSE
  47. 47. Sometimes…… Nothing can be done, at least initially.
  48. 48. Fertility Preservation: Complexity
  49. 49. Options for Fertility Preservation in Men • Sperm Banking • Testicular Tissue Freezing
  50. 50. Intracytoplasmic Sperm Injection (ICSI)
  51. 51. Testicular Tissue Freezing • Experimental • Only option for pre-pubertal boys • Potential use – Autologous transplantation – Germ cell maturation ex vivo • May be contraindicated in some cancers
  52. 52. Options for Fertility Preservation in Women • Assisted Reproductive Technologies (ART) – Embryo cryopreservation – Oocyte cryopreservation • Mature • Immature • Ovarian tissue cryopreservation • Ovarian Suppression • Ovarian transposition • Conservative surgery • Shielding
  53. 53. ART: In Vitro Fertilization (IVF) Picture used with permission from MD Anderson Cancer Center
  54. 54. Embryos or Oocytes? Embryos Oocytes Most common and successful Experimental label removed Need a partner or donor sperm No partner required; provides reproductive autonomy; Bypasses some religious objections Takes approximately 2 weeks Takes approximately 2 weeks Requires ovarian stimulation Requires ovarian stimulation Success rates approximately 30-35% Success rates rapidly improving: 25% $10,000 + medications $8000 + medications
  55. 55. Ovarian Tissue Cryopreservation • Experimental • Timely : 1 hour, outpatient laparoscopic procedure • Does not require stimulation • Method of choice for prepubescent girls • Success rates not known • $12,000; but may be decreased significantly if done with another procedure Silber SJ. Ovary cryopreservation and transplantation for fertility preservation. Mol Hum Reprod. 2012 Feb;18(2):59-67.
  56. 56. Ovarian Tissue Cryopreservation
  57. 57. Ovarian Suppression • Use of GnRHa (Gonadotropin Releasing Hormone analog) • Experimental • The success rates unknown • May alter response to chemotherapy in hormonally sensitive cancers • $500 per injection Moore HC, Unger JM, Phillips KA, Boyle F, Hitre E, Porter D, Francis PA, Goldstein LJ, Gomez HL, Vallejos CS, Partridge AH, Dakhil SR, Garcia AA, Gralow J, Lombard JM, Forbes JF, Martino S, Barlow WE, Fabian CJ, Minasian L, Meyskens FL Jr, Gelber RD, Hortobagyi GN, Albain KS; POEMS/S0230 Investigators. Goserelin for ovarian protection during breast-cancer adjuvant chemotherapy. N Engl J Med. 2015 Mar 5;372(10):923-32.
  58. 58. After Cancer Treatment Window of Opportunity
  59. 59. After Cancer Treatment • Options – Natural Conception – Assisted Reproductive Technology – Donor Egg/Embryo – Use of a gestational carrier – Adoption – Living without children
  60. 60. Importance of Post-treatment Fertility Assessment • Can help identify point of intervention early on – Men: Semen analysis – Women: AMH and AFC • Will determine which options are available • Helps patients plan and take control of their reproductive futures
  61. 61. The Loaded Questions……… • Will it be safe for me to have a child? • Will it be safe for me to carry a pregnancy? • Will my child be negatively affected in any way? • Will I increase my risk of cancer recurrence if I become pregnant? • When would I be able to try to have a baby?
  62. 62. Pre-implantation Genetic Diagnosis
  63. 63. Considerations with Alternative Methods of Family Building • Can be more difficult than you think – Cost prohibitive – Time-consuming – Emotionally-consuming – Biases against people with a history of cancer
  64. 64. Psychosocial Aspects • Psychosocial environment that is present at the time of FP decision-making – “Double-hit” phenomenon • Psychosocial outcomes of the decision – Why are we offering FP? • To provide the possibility of having a future biological child • Lessen burden of cancer-related infertility – Why are patients opting for FP? • “Insurance policy” • To avoid future regret
  65. 65. Resources • RESOLVE • Livestrong Fertility Services • The Oncofertility Consortium • American Society for Reproductive Medicine (ASRM) –
  66. 66. Five A’s of Health Care Access • Affordability Are services affordable? • Availability Are the resources needed to provide the desired services available? • Accessibility Are services geographically accessible? • Accommodation Are services provided in a manner that meets the constraints and preferences of the patient? • Acceptability Are patients who need services comfortable using them?
  67. 67. The Oncofertility Consult Model Referral from oncologist Contact with patient navigator Oncofertility Consult Pursues fertility preservation method Opts to not pursue Provider Education Patient Education Patient Education Patient Education Patient Educati on
  68. 68. Our Decision Aid
  69. 69. The Oncofertility Consult Model Referral from oncologist Contact with patient navigator Oncofertility Consult Pursues fertility preservation method Opts to not pursue Provider Education Patient Education Patient Education Patient Education Patient Educati on Decision Aid
  70. 70. THE PREGNANT PATIENT WITH COLORECTAL CANCER Elyce Cardonick MD Professor Obstetrics & Gynecology Cooper Medical School at Rowan University
  71. 71. MOST COMMON CANCERS ACCORDING TO MATERNAL AGE Women 11-34 years Women 35+ years Leukemia Breast Lymphoma Lung Cervical Colorectal Central Nervous System Endometrial Thyroid Ovarian *First births in women 35-39 increasing J.Natl Ca Statistics
  72. 72. THE PREGNANT PATIENT WITH COLORECTAL CANCER Occurs in approximately 1:10000 pregnancies Gestational age at diagnosis 12% diagnosed first trimester 42% second 47% third Symptoms can overlap between pregnancy and CRC Nausea, vomiting, change in bowel habits common in pregnancy Investigate severe constipation, weight loss, anorexia, bloody diarrhea, abdominal pain, distension or rectal bleeding Common to assume rectal bleeding is due to pregnancy and hemorrhoids Anemia also common in pregnancy and CRC Early diagnosis of colon cancer is more difficult because may be no signs until causing obstruction or perforation with acute abdomen
  73. 73. DIAGNOSIS AND SURGERY IN PREGNANCY Older literature claimed majority are rectal carcinomas versus colonic (opposite that in general population), recent review equal Review by Bernstein and colleagues, 88% of the 41 reported cases were within reach of a flexible sigmoidoscope. . Upper and lower GI endoscopy is not contraindicated in pregnancy and should be performed whenever there is a clinical indication. Avoid maternal over sedation, with resulting hypoventilation or hypotension Remember maternal positioning that might lead to the compression of the inferior vena cava by the uterus If necessary colostomy should be placed in left lower quadrant with consideration for potentially expanding abdomen during pregnancy
  74. 74. DIAGNOSIS AND SURGERY IN PREGNANCY Treatment of CRC in pregnancy is based on gestational age of the fetus, tumor stage, and need for emergent or elective surgery. Once diagnosed, the evaluation of pregnant patients similar to nonpregnant patients with CRC: Colonoscopy to screen for synchronous lesions Endoluminal ultrasound to confirm staging of rectal lesions Monitoring of serum carcinoembryonic antigen (CEA) levels Liver ultrasound for detection of metastatic liver disease. MRI is an appropriate substitute for CT Assess rectal tumor to ensure that will not obstruct a normal labor and vaginal delivery. 7-25% involving ovaries but oophorectomy may not result in improved survival of young patients with CRC
  75. 75. TUMOR MARKERS IN PREGNANCY CEA helpful for prognostic reasons and for detecting recurrences Level only mildly affected by pregnancy
  76. 76. CHEMOTHERAPY FOR COLORECTAL CARCINOMA IN PREGNANCY FOLFOX is regimen of choice for non-pregnant patients 202 cases using 5 FU in breast cancer alone 82 cases CRC in pregnancy; 22 published cases chemotherapy Folfox use in pregnancy reported in 11 cases No ongoing pregnancies treated during first trimester 10% spontaneous preterm delivery 15% miscarriage rate (same as general population) 72% children alive 12% neonatal mortality due to prematurity or poor maternal status Long term follow up 11 months to 3.5 years in literature with 10/11 children with appropriate development and no disabilities 1 case of hypothyroidism in child Pellino Eur J Gastroenterol Hepatolb 2017
  77. 77. 78
  78. 78. TIMING OF DELIVERY Avoid preterm birth Wait 3 weeks from last chemotherapy treatment in pregnancy until delivery Hold chemotherapy after 34/35 weeks
  79. 79. MODE OF DELIVERY Overall, 60% of women with CRC-p could proceed to vaginal delivery C Section Obstruction of birth canal Obstetric indications Delivery facilitates colorectal surgery Cancer of the anterior rectum because of the risks of bleeding related to the vaginal pressure during vaginal delivery When CRC-p resection is carried out after delivery, an interval of 2–4 weeks can allow shrinkage of the uterus and vasculature and should not compromise patient outcomes in most of the cases
  80. 80. RADIATION FOR COLORECTAL CANCER Best postponed until after delivery as fetus too close to area to be irradiated and doses can have fetal effects
  81. 81. PREGNANCY AND CANCER REGISTRY: PATIENT SUPPORT: “AM I THE ONLY PREGNANT WOMAN WITH CANCER?” Most physicians only see 1-2 pregnant women with cancer during an entire career (oncologist/obstetrician) Registry pools data from treatment centers internationally to help patients and physicians make informed choices 20% of physicians recommend termination of pregnancy at diagnosis
  82. 82. ♀ Voluntary database of pregnant women diagnosed with cancer ♀ Presenting symptoms, surgical and medical treatment, pregnancy outcomes collected ♀ **Women and children are followed yearly ♀ Women presenting with symptoms which are not common in pregnancy do not have a delay in diagnosis, i.e. Hodgkin’s disease, CNS tumors, leukemia unless practitioners are hesitant to perform radiologic studies due to pregnancy ♀ Pregnancy can influence our detection of cancers in young pregnant women with breast, melanoma, thyroid or colon cancers
  83. 83. #1 question “ HOW WOULD I BE TREATED IF I WERE NOT PREGNANT?”
  84. 84. CANCER AND PREGNANCY REGISTRY SINCE 1995: CHEMOTHERAPY DURING PREGNANCY, N=243 Type of Cancer # of Patients # Newborns exposed to Chemotherapy Breast 225 168 Hodgkin’s Lymphoma 34 24 Ovarian 19 11 Non H Lymphoma 15 12 Colon 8 4 Rectal 5 4 Central Nervous Sys 10 1 Cervical 10 5 Bladder 4 2 Lung 3 1 Acute Leukemia 4 3 Chronic Leukemia 6 1 Tongue 3 2 Pancreas 2 1 Sarcoma 4 2 Choriocarcinoma 1 1
  85. 85. DATABASE SUMMARY SINCE 1995: EXPOSURE TO CHEMOTHERAPY IN UTERO, N=243 Mean GA diagnosis: 14.1+7.8w Mean GA first treatment: 20+5.8 w Mean GA delivery: 36.1+2.6 w Mean birth weight: 2629g+644g Incidence IUGR (18/220) 7.4% Incidence congenital anomalies at birth: 6.1% Incidence congenital anomalies by 2 years: 7.4%
  86. 86. CRC IN REGISTRY 13 total : 8 colon and 5 rectal 8 received chemotherapy : 5 FOLFOX; 3 5FU Majority diagnosed stage III All surgeries in first trimester Mean 3.25 years 100% alive after primary colon ca Mean of 3.9 years after delivery 80% survival for rectal CA Deceased patient diagnosed Stage III at 29weeks, no treatment delivered 35weeks 1 child PT for hemihypertrophy, all developmentally normal Mean 3.25 years 100% alive after primary colon ca Children doing well mean age 3-3.9 years (5 months-8 yrs)
  87. 87. COLORECTAL CANCER IN PREGNANCY REPORT OF 41 CASES EUROPEAN COLLABORATION: 29 colon; (3 recurrence 26 primary) ;12 rectal Majority in sigmoid colon Only 3 patients with family history for colon ca, 0 for rectal Abdominal pain, rectal bleeding/blood in stool most common symptoms 14 women underwent colonoscopy; 3 sigmoidoscopy in all trimesters without complications 7 women elected termination of pregnancy 16 hemicolectomy, 3 rectal resection, most before 20 weeks. 8 received chemotherapy for colon ca, 4 rectal Higher preterm delivery in women not receiving chemotherapy 2 year survival 66%, all deceased were diagnosed at stage IV 2 year survival 57% rectal ca, all deceased diagnosed stage IV
  89. 89. LONG TERM NEONATAL FOLLOW UP  157 chemotherapy exposed,77 unexposed Significant difference in birthweight (-230g) Chemotherapy IUGR 7.6%, unexposed 7.1% No difference in early childhood illnesses of asthma; otitis media; GERD, speech delay. Single case developmental delay/Asbergers syndrome,Tourette’s – normal fraternal twin Cardonick Am J Clin Oncol 2010
  90. 90. IN UTERO FETAL EXPOSURE TO CHEMOTHERAPY: LONG TERM FOLLOW-UP Recent European collaboration reported follow up on 70 children exposed to chemotherapy in utero Normal cognitive development in majority of children No increase in congenital malformations Children testing below normal in neurodevelopment were concentrated in group delivered preterm Included 44 women treated with 5-Fluouracil Amant et al Lancet Oncol 2012
  91. 91. IN UTERO FETAL EXPOSURE TO CHEMOTHERAPY: LONG TERM DEVELOPMENTAL FOLLOW-UP 55 children developmental testing: 35exposed; 22 controls (mothers with cancer but no chemotherapy) BayleyIII/WPPSI-R/WISCIII/Math/Reading Median age 3.6 years (18m-10.4y) 95% normal limits on cognitive assessments 71% at or above average in math, 79% in reading No difference in cognitive skills, academic achievement No relationship to maternal health at time of testing i.e. ongoing treatment, deceased or cancer free 2.3 point increase in the Bayley III cognitive score for each gestational week gained Cardonick E, et al ACOG 2013
  92. 92. DEVELOPMENTAL OUTCOME COMPARED TO UNEXPOSED CONTROLS WITHOUT MATERNAL CANCER 129 children- 96 exposed to chemotherapy controls matched for gestational age and age at testing Bayley 18, 36 months or both. Median 22m No difference in medical issues in early childhood No difference in cognitive development *Cognitive outcome was not significantly different from controls for any subgroup of maternal treatment i.e. type of chemotherapy, radiotherapy, nor related to number of cycles or fetal dose of radiation exposure For each week gained in utero in exposure group, 2.9 point increase on cognitive scale Amant et al NEJM 2015
  93. 93. THE PREGNANT PATIENT WITH COLORECTAL CANCER Multidisciplinary team to discuss options Women who terminate the pregnancy do not demonstrate improved survival No reports of adverse fetal outcomes due to the malignancy itself Colorectal surgery possible prior to 20weeks, avoid maternal hypotension, hypo oxygenation, anesthesia safe for fetus Surgical management of liver metastases should be delayed until the post-partum period. Pregnant women have same survival as non-pregnant women matched for stage “in THOSE WHO ARE TREATED SUCCESSFULLY.” Iatrogenic preterm delivery common
  94. 94. Navigating The Survivorship Landscape – Protections For The Cancer Patient In The Work Place Debra Wolf JD New York Legal Assistance Group
  95. 95.  2006 LegalHealth 2006 LegalHealth Protections for the Cancer Patient in the Work Place March 12, 2017
  96. 96.  2006 LegalHealth Objectives Workplace rights and job protection • Disclosure laws • Securing reasonable accommodations • Family Medical Leave Act • Discrimination 99
  97. 97.  2006 LegalHealth Applicable Laws 100 At-Will Employer American’s with Disabilities Act/ ADAAA Family Medical Leave Act State Disability Laws
  98. 98.  2006 LegalHealth Americans With Disabilities Act (ADA) • Federal Law-applies to all 50 states • Applies to employers with 15 or more employees • Prohibits discrimination based on disability • Employer must provide reasonable accommodations 101
  99. 99.  2006 LegalHealth Who Is Disabled Under the ADA • A person has a disability if he/she has a physical or mental impairment that substantially limits one or more major life activities – (e.g., performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working). • ADA does not list specific diseases or conditions but with ADAAA, liberal determination. 102
  100. 100.  2006 LegalHealth Americans With Disabilities Act Amendments Act of 2008 • Makes important changes to the definition of the term "disability" and makes it easier for an individual to establish that he or she has a disability within the meaning of the ADA. • Now includes: – impairment that is episodic or in remission – without regard to mitigating measures such as medication or hearing aids (eyeglasses/contacts not included) 103
  101. 101.  2006 LegalHealth Know Your City and State Anti-Discrimination Laws • Most states have anti-discrimination laws for disabled • Many expand protections • For example, New York State and City Human Rights Law – Applies to all employers with 4 or more employees – Broader protection than ADA 104
  102. 102.  2006 LegalHealth Common Questions Disclosure in the Workplace Employment Medical Inquiries: • Does an employer have a right to ask for medical information about me during a job interview? • Do I have to tell my employer, or prospective employer, my health status at any time? • Is my confidentiality protected if I tell my employer my health status? • Can I be fired if I disclose my health status? 105
  103. 103.  2006 LegalHealth Pre-Employment Inquiries • Generally no disability related questions allowed • Employers may ask about an applicant's ability to perform specific job functions • Employers may ask about an applicant's non- medical qualifications and skills • Employers may ask applicants to describe or demonstrate how they would perform job tasks 106
  104. 104.  2006 LegalHealth Conditional Job Offer If a conditional job offer is made: • employer may ask disability-related questions • may require medical examinations as long as this is done for all entering employees in that job category • medical examination does not need to be job related • employer cannot reject based on health unless consistent with business necessity/direct threat • more protection with disclosure 107
  105. 105.  2006 LegalHealth On The Job Inquiries • Must be job-related and consistent with business necessity: • When an employer "has a reasonable belief, based on objective evidence, that: (1) an employee's ability to perform essential job functions will be impaired by a medical condition; or (2) an employee will pose a direct threat due to a medical condition • Does not apply to employee drug test policy 108
  106. 106.  2006 LegalHealth Reasonable Accommodations • Any change in the work environment or in the way things are customarily done that enables an individual with a disability to enjoy equal employment opportunities and includes – making existing facilities accessible – job restructuring; acquiring or modifying equipment – part-time or modified work schedules – changing tests, training materials, or policies; – reassignment to a vacant position 109
  107. 107.  2006 LegalHealth Reasonable Accommodations Cont. • No set list of reasonable accommodations • Employer and job specific • Cannot cause an undue hardship for employer (usually comes down to costs) • Examples – Flexible work hours; Work space alterations – Reducing workplace stress; Writing aids – Written instructions; Automatic doors Must be able to perform essential job functions with accommodation 110
  108. 108.  2006 LegalHealth How do I request a reasonable accommodation? • Employee responsibility to request • In writing, to Human Resources if available • A statement from a physician is advisable Some employers have a form; other employers may simply accept a letter • Employer access to full medical records not required or allowed • Requirement of “interactive process” 111
  109. 109.  2006 LegalHealth Model Physician Letter for Reasonable Accommodation Request Ask your physician to: • Identify him/herself as your treating physician • Identify your medical condition, specifically or generally depending on your wishes • Identify the symptoms or impairment you have as a result of the health condition • Identify the reasonable accommodation as medically necessary • State that you are able to perform your essential job functions 112
  110. 110.  2006 LegalHealth Reasonable Accommodations Cont. Protected medical information under ADA: • requires separate employee medical file • access only on a “need to know” basis The Job Accommodation Network ( has a useful website with examples. 113
  111. 111.  2006 LegalHealth What if discrimination occurs? • Think about disclosure- who and for what reason as often not protected • Keep records/copies of emails • Talk to HR or someone in higher position • Can file complaint with EEOC or under city or state anti-discrimination laws (limited ADA claim if state employee) • Talk to attorney as deadlines are strict and laws are complicated 114
  112. 112.  2006 LegalHealth Taking A Medical Leave Family Medical Leave Act (FMLA) FMLA protects the job of an employee who needs to take time off from work to care for themselves or a spouse, child or parent • applies to employers with 50 or more employees within a 75 mile radius • employee must have worked at least 12 months and for 1250 hours during the last year 115
  113. 113.  2006 LegalHealth FMLA cont. • Unpaid leave with job protection for up to twelve weeks • Can be used for intermittent leave • Health insurance/benefits must continue during FMLA time • Employer must advise of right to FMLA 116
  114. 114.  2006 LegalHealth Common FMLA Questions • Do I have to disclose my health status to qualify for FMLA leave? • What if I need time off but do not qualify for FMLA? – Check company policy – Can request time off as an ADA Accommodation • If FMLA leave is unpaid, how am I supposed to pay my bills? – Accrued sick or vacation time, short term disability 117
  115. 115.  2006 LegalHealth Short Term Disability • Five states (CA, HI, NY, NJ,RI, & PR) require employers to offer a minimum level of short-term disability protection. • Many employers offer private STD Plans. • Generally for 26 weeks • What happens if I can return to work within the STD period, but cannot return within the 12 week FMLA period? • What happens if I cannot return to work after 26 weeks? 118
  116. 116.  2010 LegalHealth 119 Resources: National Cancer Legal Service Network Job Accommodation Network ( Cancer and Careers LegalHealth Cancer Intake Line (212) 946-0357 For more information visit our website
  117. 117. Improving Outcomes For EAO-CRC – Moderated By Thomas Weber MD FACS - Course Director And Host, Professor of Surgery State University of New York at Downstate
  118. 118. Improving Outcomes For EAO-CRC Identifying and Protecting Those at Increased Risk Dennis Ahnen MD AGAF FACG University of Colorado School of Medicine
  119. 119. Dennis J. Ahnen MD Director, Genetics Clinic Gastroenterology of the Rockies Professor Emeritus, University of Colorado School of Medicine Identifying and Protecting Those at Increased Risk of CRC
  120. 120. • Unique opportunity of EAO CRC survivors • Identify those at increased risk • Yourself • Your family • Your community • Protecting those at increased risk • Yourself, family • Community, Broader Society Identifying and Protecting Those at Increased Risk of CRC
  121. 121. • Background • Who are the survivors of EAO CRC? • Magnitude of risk in EAO CRC survivors and their families • Causes of EAO CRC • How can cancer risk be reduced? • What should we do about it now? Identifying and Protecting Those at Increased Risk of CRC
  122. 122. Source: Rebecca Siegel MPH SEER 9 delay-adjusted rates, 1975-2012; 2-yr moving average. 0 2 4 6 8 10 12 14 Men Women 51% since 1994 0 50 100 150 200 250 300 Incidencerateper100,000 Men Women Ages 50+ Ages 20-49 40% since 1987 Young-Onset CRC Incidence is Increasing Incidence/100,000 Incidence/100,000 ≈10% of all CRCs ≈14,000 new YO-CRCs
  123. 123. Normal epithelium Abnormal epithelium Small adenoma Large adenoma Colon carcinoma 10-15 Years The Adenoma Carcinoma Sequence
  124. 124. Who Are Cancer Survivors? NCI- An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition. • Almost all of you
  125. 125. Risk Factors CRC and EAO CRC Demographic • Country of origin • Age • Sex • Race/Ethnicity • SES • Family History ✓ ✓ ✗ ? ✓
  126. 126. Family History of CRC Increases Risk Fuchs et al NEJM 1994
  127. 127. FoldRisk Lifetime Risk 5% Having an FDR with an advanced adenoma is associated with similar increases in risk of CRC 0 1 2 3 4 5 6 7 8 9 10 Survivor 1 FDR/CRC 1 FDR <60 2 FDR >2 FDRs Lynch FAP Magnitude of CRC Risk in Survivors and their Families
  128. 128. Familial and Hereditary CRC Burt RW et al. Prevention and Early Detection of CRC, 1996 Sporadic (≈ 70%) Familial (≈ 25%) Lynch Syndrome (2-3%) CRC and Endometrial Ca Others Familial Adenomatous Polyposis (<1%) Rare CRC Syndromes
  129. 129. CRC Age and Hereditary Risk 0 5 10 15 20 25 Traditional Panel < 50 < 40
  130. 130. Risk Factors Demographic • Country of origin • Age • Sex • Race/Ethnicity • SES • Family History Lifestyle • Obesity • Low Physical Activity • Smoking • Alcohol Diet • High Red/Processed Meat • Low Fiber Containing foods •Low Fruit and Vegetable Modifiable May impact survival as well
  131. 131. xx CRC Prevention
  132. 132. Normal epithelium Abnormal epithelium Small adenoma Large adenoma Colon carcinoma ASA and the ACS 40% 20% 30% Adenoma Incidence Metachronous Adenoma Incidence CRC Survval 20% Cancer in Lynch Syndrome 40% Ca Incidence/ Mortality- 20-40% Why not use it in everyone? Absolute benefit is small and takes 5-10 yrs ASA risks occur early
  133. 133. Risk Factors Demographic • Country of origin • Age • Sex • Race/Ethnicity • SES • Family History Lifestyle • Obesity • Low Physical Activity • Smoking • Alcohol Diet • High Red/Processed Meat • Low Fiber Containing foods •Low Fruit and Vegetable Protective Factors • Aspirin for selected groups •Screening
  134. 134. FoldRisk Screening Intensity 0 1 2 3 4 5 6 7 8 9 10 Survivor 1 FDR/CRC 1 FDR <60 2 FDR >2 FDRs Lynch FAP Magnitude of CRC Risk in Survivors Lifetime Risk 5%
  135. 135. Screening Recommendations- FH of CRC FH Risk Group Recommended Screening Exam Starting Age Interval Average Risk No PH of FH of colonic neoplasia No PH of IBD HS-FOBT FS, FS+FOBT, Colonoscopy, MT-sDNA, CTC Age 50 (45 in AAs?) Annually q 5 yrs, q 10 and 1 q 10 yrs q 3 or 5 yrs Survivor Colonoscopy At dx, then 1, 3 and 3-5 yrs 1 FDR with CRC > age 60 Any or Colonoscopy Preferred 40 or 50 q 5-10 yrs 1 FDR with CRC < age 60 or > 1 FDR with CRC Colonoscopy 40 or 5-10 years younger than earliest CRC in family q 5 yrs Lynch Syndrome Colonoscopy 25 or earlier q 1 or 2 yrs FAP Colonoscopy 10-15 annually
  136. 136. What Can/Should We Do Now? Survivors • Don’t ignore symptoms • Adopt Healthy Lifestyle • Know your cancer FH • Know/follow screening recs • Inform/encourage family • Become an advocate • Family- Screening • Community, Broader • Tell your story • Get involved in research Providers • Evaluate symptoms • Promote Healthy Lifestyle • Know your patients’ FH • Know/follow screening recs • Inform/reach out to family • Be an advocate • Family • Community, Broader • Become a Champion
  137. 137. What Can/Should Organizations Do Now? • Vigorous education campaign focusing on importance of symptoms in young adults • Change the narrative from “Get screened at age 50” to “Discuss your family history and CRC screening well before the age of 40” • Advocate for and fund the work that would provide evidence for starting screening at a younger age
  138. 138. Survivors- Make a Difference
  139. 139. Interested in Attending the 4th Annual EAO CRC Summit in 2018? Join our mailing list by visiting