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Sexuality  Resources  for  Oncology  Nurses    Veronika  Kolder,  MD  veronika-­‐kolder@uiowa.edu,  Erin  Sullivan  Wagner  erin@aftercancer.co  

Menopause  and  Sexual  Health  Clinic,  appointments  at  (319)  356-­‐2294  Gyn  clinic  RN  (319)  356-­‐2294,  ext  3  (ask  for  Julie  Youngblut,  RN)  

November  2015    

Slides,  handout,  NCCN  Guidelines  for  Female  Sexual  Dysfunction,  Brief  Sexual  Symptom  Checklist,  Sexuality  Resources  for  Women  &  Girls,  and  some  articles  (Denlinger  et  al.  Survivorship:  Sexual  Dysfunction  (Female),  Version  1.2013.  JNCCN  2014;12:184-­‐92)  available  at  www.aftercancer.co     SANXDE-­‐1,  NCCN-­‐endorsed  anxiety  &  depression  assessment  tool,  2015  update  in  development   http://cache1.medsci.cn/webeditor/uploadfile/201503/20150325140423575.pdf     NCCN  Distress  management  guidelines,  Holland  et  al.  JNCCN  2010;8:448-­‐85     http://www.nccn.org/professionals/physician_gls/f_guidelines.asp     FSFI  (Female  Sexual  Function  Index)         http://www.fsfiquestionnaire.com/    Websites  and  Literature  (alphabetical)    Goetsch  MF  et  al.  A  practical  solution  for  dyspareunia  in  breast  cancer  survivors:  a  RCT.  J  Clin  Oncol  2015;33(30):3394-­‐3400    Graham  C,  Everything  nobody  tells  you  about  cancer  treatment  and  your  sex  life:  from  A  to  Z.    http://kanwa.org/sexual-­‐health/a-­‐z-­‐guide    Hordern  A,  Intimacy  and  sexuality  after  cancer:  a  critical  review  of  the  literature.  Cancer  Nurs  2008;31(2):E9-­‐17    Institute  for  Sexual  Medicine,  Irwin  Goldstein,  MD,  President  and  Director,  provides  training  for  professionals  in  basic  science  research  and  clinical  care        www.theinstituteforsexualmedicine.com    International  Society  for  the  Study  of  Women’s  Sexual  Health  offers  a  special  interest  group  and  provider  trainings  focused  on  female  sexual  health  and  cancer        www.isswsh.org    Kaplan  &  Pacelli,  The  sexuality  discussion:  tools  for  the  oncology  nurse.  Clin  J  Oncol  Nurs  2011;15(1):15-­‐17,  also  available  to  subscribers  at  the  Oncology  Nursing  Society  website  (see  below)    Katz  A,  Breaking  the  silence  on  cancer  and  sexuality:  a  handbook  for  healthcare  providers,  published  by  Oncology  Nursing  Society,  1st  ed.  2007    Katz  A,  Woman,  Cancer,  Sex.  A  book  by  Canadian  doctor  of  nursing  who  has  dedicated  her  career  to  education,  Pittsburgh,  PA:  Hygeia  Media,  2009    Kayser  &  Scott,  Helping  couples  cope  with  women’s  cancer:  an  evidence-­‐based  approach  for  practitioners,  written  by  a  social  worker  and  psychologist,  1st  ed.  2008    Lindau  ST  et  al,  A  manifesto  on  the  preservation  of  sexual  function  in  women  and  girls  with  cancer.  AJOG  2015;213(2):166-­‐174.    DOI:  10.1016/j.ajog.2015.03.039  www.sciencedirect.com/science/article/pii/S0002937815003208  

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 National  Cancer  Institute  Physician  Data  Query  (PDQ),  Sexuality  &  Reproductive  Issues,  Treatment  of  sexual  problems  in  people  with  cancer  www.cancer.gov/about-­‐cancer/treatment/side-­‐effects/sexuality-­‐fertility-­‐women/sexuality-­‐hp-­‐pdq#section/_69    Oncology  Nursing  Society  website  has  an  educator  resource  center  where  subscribers  can  access  a  demonstration  of  a  sexuality  interview,  articles  about  sexuality  and  reproductive  issues,  case  scenarios,  and  a  PowerPoint  presentation  http://erc.ons.org/resources?search_api_views_fulltext=sexuality    Shapira  &  Dizon,  Sex  after  cancer:  the  unaddressed  issue.  Medscape,  Aug  24,  2015.  Interview  with  an  oncologist  and  sexual  health  specialist,  addresses  assumptions  related  to  aging,  gender  identity.    http://www.medscape.com/viewarticle/849944    Schover  LR,  Sexuality  and  Fertility  After  Cancer,  Hematology  2005;523-­‐7  http://asheducationbook.hematologylibrary.org/content/2005/1/523.full.pdf+html    Scientific  Network  on  Female  Sexual  Health  and  Cancer  offers  membership  to  professionals  with  interest  in  evidence-­‐based  approaches  to  the  prevention  and  management  of  female  sexual  problems  www.cancersexnetwork.org    Society  for  Sex  Therapy  and  Research  offers  member  benefits  including  access  to  resources  in  the  field  and  continuing  education  credits  at  SSTAR  meeting  www.sstarnet.org    University  of  Chicago’s  Program  in  Integrative  Sexual  Medicine  (PRISM),  Stacy  Tessler  Lindau,  MD,  MAPP,  Director,  offers  on-­‐site  consultation,  education,  and  clinical  site  visits  for  professionals  who  seek  to  create  a  regional  clinical  and  research  program,  including  multisite  research  registry  www.uchospital.edu/specialties/obgyn/prism.html,  (contact  slindau@uchicago.edu)          Talking  to  clients  about  sex:    Validate  and  normalize  the  experience  of  sexual  problems    

o “Most  survivors  who  have  been  through  this  kind  of  treatment  find  themselves  facing  changes  in  sexual  function.”  

o  o “Can  you  tell  me  about  the  impact  that  cancer  has  had  on  sexuality  or  intimacy  for  you?”  o  o “Sometimes  talking  can  help.  Is  there  anything  else  about  your  sexual  health  that  has  been  

bothering  you?”         -­‐Adapted  from  Bober  &  Vareia.  J  Clin  Onc  2012;30:3712-­‐9  

   

 

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PLISSIT  model     P  ermission  

o Invites  patient  to  enter  into  a  discussion  about  sexual  health  o “I’d  like  to  review  how  you  are  doing  as  it  relates  to  both  sexuality  and  intimacy.  Would  that  be  

okay?”  o “Are  you  (and  your  partner)  having  problems  being  intimate?”  

  L  imited  I  nformation  o Normalizes  that  issues  related  to  sexual  health  are  common  o “Some  women  complain  that  sex  and  intimacy  are  different  now.  In  fact,  it  is  pretty  common.  

How  has  your  experience  been?”  o “A  common  complaint  is  pain  during  intercourse.  Is  this  something  that  is  happening  with  you?”  

  S  pecific  S  uggestions  o Offer  advice  that  can  be  actionable  and  easy  to  incorporate  if  possible  o “If  you  have  some  trouble  with  vaginal  dryness,  it  may  help  to  use  a  lubricant  before  and  during  

sex.”     I  ntensive  T  herapy  

o If  one  is  not  comfortable  with  issues  brought  up  or  does  not  know  what  to  advise,  offer  expert  consultation  locally  (if  possible)  or  refer  to  educational  resources.  

o “It  sounds  like  you  might  benefit  from  seeing  an  expert  in  sexual  health.  Can  I  suggest  a  referral?”  

            -­‐Hordren,  2008,  based  on  Annon  JS.  Behavioral  treatment  of  sexual               problems:  brief  therapy.  NY,  NY:  Harper  &  Row,  1976;45.  5  A’s  model  

• Ask     ‘How  has  treatment  affected  your  sex  life?’  

• Advise         ‘Many  patients  with  cancer  struggle  with  sexual  problems.’  

• Assess     Eg  Brief  Sexual  Symptom  Checklist  

• Assist     Offer  brief  counsekling,  counseling  referral,  internet  resources  

• Arrange  follow-­‐up     Inquire  at  subsequent  visits         -­‐Park  et  al.  Cancer  J  2009;15(1):74-­‐77    

BETTER  model    o B  ring  up  the  topic.  o E  xplain  you  are  concerned  with  quality-­‐of-­‐life  issues,  including  sexuality.  Although  you  may  not  

be  able  to  answer  all  questions,  you  want  to  convey  that  patients  can  talk  about  any  concerns  they  have  

o T  ell  patients  that  you  will  find  appropriate  resources  to  address  their  concerns.  o T  iming  might  not  seem  appropriate  now,  but  acknowledge  that  they  can  ask  for  information  at  

any  time.  o E  ducate  patients  about  the  side  effects  of  their  cancer  treatments.  o R  ecord  your  assessment  and  interventions  in  patients’  medical  record.  

          -­‐Hordren,  Cancer  Nurs  2008;31(2):E9-­‐E17             -­‐Mick  et  al.  Clin  J  Onc  Nurs  2004;8(1):84-­‐86    

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 Carter  et  al.  J  Sex  Med  2011;8:549-­‐59    

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who present with vulvodynia symptoms even inthe absence of skin or mucosal changes. Thisrecommendation has been debated in the litera-ture.65 However, biopsy of a specific skin findingis often best to avoid false positives, and evalua-tion by a trained dermatopathologist isessential.25,66,67

Evaluation of Psychosocial Effects

Vulvodynia often significantly affects a woman’spsychological health. Reports of psychosocialstress are common in the literature and includedepression, altered body image, impaired socialrelationships, altered sexual function, and difficultyin physical activities and daily activities of life. Anoverall decrease in quality of life is seen in womenwith vulvodynia.8,68

As with other areas, conflicting studies existregarding the psychosocial effect of vulvardiscomfort. The only consistent psychologicaleffect in women with vulvodynia was difficultywith sexual functioning. Although studies findthat affected women’s physiologic sexual arousalis not impaired, because of fear of sexual inti-macy from previous experiences with pain withintercourse, patients become fearful and thussexual arousal is decreased. It is often necessaryto perform a psychosexual assessment or tosend patient and partner to be properlyevaluated.69,70

Treatment

The management of vulvodynia includes nonspe-cific supportive measures (Box 2) as well asspecific therapies directed toward the treatmentof neuropathic pain, pelvic floor muscle dysfunc-tion, and the psychosexual factors and sequelae(Box 3).

Education

Patients who have vulvodynia often enduremultiple therapeutic modalities. First, it is essentialto properly diagnose and identify the pain patternof vulvodynia. It is important to fully educate thepatient and the partner and to fully explain boththe condition and treatment options. Always intro-duce the concept early in the treatment processand warn that initial treatment is a trial oftherapy.53,57,71e74 Validation of the patient’ssymptoms is invaluable in treatment. Many womenare convinced that their symptoms result froma yeast infection or are fearful that their symptomssignify a serious underlying medical illness orfuture infertility. Patients need reassuranceregarding these concerns and that their symptomsare not caused by a sexually transmitted or life-

threatening disease. The self-managementprogram that the Robert Wood Johnson MedicalSchool-University of Medicine and Dentistry ofNew Jersey used during a vulvodynia clinical trialintroduces empowerment through individual self-management. It consists of 3 components,including a psychoeducation component thatinvolves understanding of exacerbating and allevi-ating factors, mental preparation and generalizedawareness of their condition, and the ability tocontrol factors affecting the condition. Learningto manage factors was empowering to patients.The second component involved physicallytraining the pelvic floor through understandingthe physiology of pelvic pain and learning exer-cises to decrease the painful sensations. The thirdcomponent of self-management is sexual prepara-tion of both patient and partner, which consists oflearning other forms of sexual pleasure. The studyfound these techniques to be highly effectivebecause the woman empowers herself throughtaking control of the condition and her responseto the condition.8

There are almost no scientific data on the effi-cacy of therapies for vulvodynia. Clinical trials areprimarily limited to small, open series of patients,and placebo-controlled studies are too small toyield useful data. However, because vulvodynia

Box 2Nonspecific activities for managing vulvodynia

Validate symptoms, be supportive

Treat any objective abnormalities

Topical estrogens (estradiol vaginal cream [Es-trace] can be used intravaginally or topically)(conjugated equine estrogen [Premarin])

Discontinue irritants (eg, excessive washing, irri-tating lubricants, tight clothing, douching,nonessential medications, sanitary pads, hairdryers)

Apply lubrication during sexual activity (eg,vegetable oil, Astroglide)

Apply lylocaine 2% jelly or 5% ointment forpain 20 minutes before sexual activity

Apply cold compresses (eg, crushed ice, frozenpeas, gel pack)

Address and manage depression

Offer education (including written material) forboth patient and partner

Refer patient for membership in National Vul-vodynia Association

Refer both patient and partner for sex therapyand counseling to help cope with symptoms

Vulvodynia 685

has gained recognition as a common and treatableentity, more studies are ongoing. A broad range ofpossible management strategies exists, but thetrial and error approach is necessary to find themost effective treatment of a patient. The concernis that few of the treatment strategies have beenconfirmed in randomized controlled trials.75e77

However, therapies should not be disregardedbecause of lack of randomized controlled clinicaltrials, because this is a complicated and difficult-to-treat condition.

Vulvar Care and Topical Preparations

A variety of general nonspecific measures areavailable to increase the comfort level of womenwith vulvodynia (see Box 2). All potential irritantsshould be eliminated, including the frequent appli-cation of medications, particularly creams thatcontain alcohols and other irritating substances.Excessive washing of the vulvar region by patientsis common, and many commercial lubricants (eg,K-Y lubricating jelly [Ortho McNeil, Raritan, NJ,USA]) may cause irritation. Astroglide (BioFilm,Vista, CA, USA) and vegetable oil are good alterna-tives. Xylocaine (AstraZeneca, Wilmington, DE,USA) 2% jelly (does not burn on application) and5% ointment (brief burning sensation on applica-tion but is more potent) can help relieve the symp-toms of burning in many women and, whenapplied liberally 20 minutes before sexual activity,may facilitate intercourse. Zolnoun andcolleagues79 trialed 5% lidocaine ointment in 61patients with vulvodynia, and a significant increasein patients’ ability to have intercourse was noted(76% of women reported ability to have inter-course, compared with 36% beforetreatment).78e81 In this study, patients appliedthe ointment on the cotton ball and placed it inthe vestibule overnight. Patients continued toapply the preparation for 7 weeks, althoughsome applied it for a longer period of time. Dan-ielsson and colleagues66 compared applicationof topical lidocaine gel with biofeedback in 46women and found improved sexual function inboth groups at 12 months. Lidocaine applicationdoes have side effects, so it is important to instructpatients that transient penile numbness may occurfor sexual partners and that a remote chance oflidocaine toxicity exists.57 A condom maydecrease such side effects. Application of topicalanesthetics may result in significant increase inthe degree of comfort during intercourse.72,78

The application of cold compresses or ice to thevulva may help relieve symptoms. Rinsing andpatting dry the vulva after urination may be helpful.Use of hair dryers should be discouraged. Benzo-caine is the anesthetic in Vagicaine (Clay-ParkLaboratories Inc, Bronx, NY, USA) and Vagisil(Combe Inc, White Plains, NY, USA), but this maycause allergic contact dermatitis and should beavoided. Diphenhydramine (Benadryl; WarnerWellcome, Morris Plains, NJ, USA), present inmany topical anesthetics and anti-itch prepara-tions, is also is a common sensitizer that shouldbe avoided.54

The topical immune response modifier imiqui-mod (Aldara, 3M Pharmaceuticals) has been sug-gested as a potential therapy because of its

Box 3Standard therapy for vulvodynia

Treat abnormal visible conditions such as infec-tions, dermatoses, and both malignant andpremalignant conditions

Vulvar care measures; avoidance of irritants

Topical medications

Lidocaine 5% jelly at introitus at bedtime

Nitroglycerine

Amitriptyline 2%, baclofen 2%(!ketofen 2%)

Capsaicin

Oral medications:

Antidepressant class

Tricyclic medications ("150 mg/d)

Venlafaxine extended release (150 mg/d)

Duloxetine (60 mg twice a day)

Anticonvulsant class

Gabapentin ("3600 mg/d)

Pregabalin ("300 twice a day)

Injections

Triamcinolone 10 mg/mL, 0.2e0.4 mL intotrigger point

Botulinum toxin A injections

Intralesional interferon (IFN)-a (no longerused)

Pelvic floor physical therapy

Pelvic floor surface electromyography andbiofeedback

Low-oxalate diet with calcium citrate supple-mentation (controversial)

Cognitive-behavioral therapy (CBT), sexualcounseling

Surgery (for vestibulodynia only) localized exci-sion/vestibulectomy/perineoplasty

Groysman686

VULVODYNIA    

Groysman.  Dermatol  Clin  2010;28:681-­‐96  (Note:  these  guidelines  are  not  cancer-­‐specific).  

 

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COLOSTOMY:  The  4  ‘P’s  

 

 

DeSimone  et  al.  AJCO  2014;37(1):101-­‐6  

 

 

 

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Kaplan  &  Pacelli,  The  sexuality  discussion:  tools  for  the  oncology  nurse.  Clin  J  Oncol  Nurs  2011;15(1):15-­‐7.  Also  available  to  subscribers  via  the  Oncology  Nursing  Society  website  (above).