11a bolte san antoniofinal2010bolte


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  • You have in your handouts the lists of Biological, Psychological and Social Effects – all of which many of our patients experience and many who have no idea that a medication they are taking could possibly complicate the problem they are already experiencing OR that a simple change in medication or positions could help eleviate the problem!!! Impacting the four phases of sexual response. It is important to know where are clients are being affected so we can better help them find solutions. If their problem is desire, because of fatigue or not being attracted to themselves or their partner than we can help prescribe solutions that focus on that, RATHER than just handing them viagra! Psychological; misbeliefs about the origin of the cancer, guilt related to these misbelifs, coexisting depression, changes in body image, stresses to personal relationships. Can be desire disorder, arousal disorder, orgasmic disorder (pain or unable) and sex pain disorders
  • An evaluation tool that can be flexible with clinician’s knowledge and experience (Robinson and Annon, 1976) PLISSIT model uses a series of discussions about the specific effects of treatment on sexual function and options for adaptation or resumption of sexual activity Shipes and Lehr, 1982 estimated that 70% of sexual problems related to cancer therapy can be managed by using the first three levels of model
  • Before Getting Permission: Social Worker must be comfortable with the topic Establish rapport before openly discussing sexuality and use patient’s language and terms Do not wait for the patient to bring up sexuality Normalize questions “Many of our patients taking chemotherapy lose interest in sex. Is this a problem for you?”
  • Of Course it depends on the relationship you have with the patient and or their significant others that determines the questions you use
  • Be informed about the sexual implications for your patient Do not assume patients or loved ones know normal sexual physiology Include sex education in all interactions with patients (this could be as simple as providing the ACS booklet Sexuality and Cancer)
  • Positioning and finding other ways to build intimacy – especially for the single person Suggetion: Sensate focus exercise Worry that sex my cause recurrence Time, encourage not to rush Pouch covers for ostomy patients Changing time of day and positioning for intimacy when there is pain or fatigue “ Sexuality and Cancer”, ACS booklet provides detailed sexual advice and guidance Provide tips on maintaining intimacy without sex, exploring alternative pleasurable activities Direct to self help books, or information on dilators, lubricants, etc Sensate focus exercises Take a bath before sex to relax, use lubricants and change position if concerned about pain
  • Plastic or rubber tube used to stretch vagina
  • 70% of patients will only need the first three interventions Referral for psychological or sexual therapy may be required for past trauma or troubled relationship Know your limitations and skills, continue to assess needs Support and Compassion = Normalizing and Validating concerns and providing appropriate referrals
  • Research is extremely important in this area…you have a great population that can easily be assessed so we can learn more and learn how to better provide our patients with information.
  • 11a bolte san antoniofinal2010bolte

    1. 1. Sage Bolte, PhD, LCSW, OSW-C Oncology Counselor Life with Cancer ® Fairfax, VA [email_address]
    2. 2. <ul><li>Define Sexuality and Intimacy </li></ul><ul><li>Describe and discuss the sexual health and intimate needs of AYA’s </li></ul><ul><li>Briefly discuss the PLISSIT sexual health assessment model to increase skill of assessing their sexual health needs </li></ul>
    3. 3. 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
    4. 4. <ul><ul><li>Physical / Biological </li></ul></ul><ul><ul><li>Psychological </li></ul></ul><ul><ul><li>Social </li></ul></ul><ul><ul><li>Desire </li></ul></ul><ul><ul><li>Arousal </li></ul></ul><ul><ul><li>Orgasm </li></ul></ul><ul><ul><li>Resolution </li></ul></ul>Effects can be multi-factorial : <ul><li>Does not discriminate among age </li></ul><ul><li>Resuming sexual function can be one way of feeling that life is ‘normal’ </li></ul>Intimacy
    5. 5. <ul><li>Not much – more studies need to be done. You can help! </li></ul><ul><li>Most of the literature is on older adults or adults with cancer of a sexual organ that we have to draw information from. </li></ul><ul><li>YA Childhood survivors: 52% of females and 32% of males reported at least a “little of a problem” on one or more areas of sexual functioning (Zebrack, 2009). </li></ul>
    6. 6. <ul><li>Nearly 90% of the patients seen at pediatric centers or by pediatric oncologists are less than 15 years old (Albritton, K. 2004) </li></ul><ul><li>We don’t have enough research yet looking at the long term survivorship issues around sexuality issues (especially for those pre-pubescent) </li></ul><ul><li>In adult studies, 40% - 100% of all persons who have received cancer treatment will experience some form of sexual dysfunction </li></ul>
    7. 7. <ul><li>We aren’t talking about “IT” because </li></ul><ul><ul><li>We are fearful we don’t have enough information </li></ul></ul><ul><ul><li>Believe someone else will address it </li></ul></ul><ul><ul><li>The patient is too young or “it isn’t applicable right now” </li></ul></ul><ul><ul><li>Believe they will come to us if they have qsts </li></ul></ul><ul><ul><li>It isn’t important to address right now </li></ul></ul><ul><ul><li>Don’t want to violate the parents rights and/or “rock the boat” </li></ul></ul><ul><ul><li>Not clear on the laws </li></ul></ul><ul><ul><li>Don’t want to offend our patients or their parents </li></ul></ul><ul><ul><li>Not clear on the ethical implications or dilemma’s </li></ul></ul>
    8. 8. <ul><li>Know the laws (e.g.) </li></ul><ul><ul><li>In VA: 15 and over do not need parental consent for reproductive and sexual health resources </li></ul></ul><ul><ul><li>APA/AMA encourages both parental and patient consent/assent under 15 </li></ul></ul><ul><ul><li>Informed Consent or Assent: should cover fertility and possible delay/stunt in puberty, if patient is too young, parents should be made aware prior to treatment </li></ul></ul>
    9. 9. <ul><li>Age at diagnosis contributes to higher sexual dysfunction and distress in childhood cancer survivors, those diagnosed during adolescence or older demonstrated lower functioning and higher distress (Zebrack et al., 2009) . </li></ul><ul><li>Age and age at diagnosis was not significant for those diagnosed as young adults and sexual function, sexual esteem and sexual distress were all significantly correlated with quality of life measures (Bolte, 2010) . </li></ul><ul><li>Low sexual function does not necessarily mean high sexual distress, but low sexual esteem and high sexual distress does impact QOL (Bolte, 2010). </li></ul>
    10. 10. Female YA childhood survivors reported higher means of problems with all aspects of sexual functioning than male survivors, however, all were significant with aspects of quality of life (Zebrack et al., 2009) Zebrack, B., Foley, S., Wittmann, D., & Leonard, M. (2009). Sexual functioning in young adult survivors of childhood cancer, Psycho-Oncology.
    11. 11. From: Zebrack, B., Foley, S., Wittmann, D., & Leonard, M. (2009). Sexual functioning in young adult survivors of childhood cancer, Psycho-Oncology.
    12. 12. <ul><li>Young adult cancer survivors demonstrated significantly different sexual self perceptions than their healthy peers (lower sexual esteem, higher sexual distress, lower sexual functioning). </li></ul><ul><li>Sexual history of non-consensual sexual incidences was higher for all participants than US reported average (23.9% females and 17.7% males compared to average of 18% and 3%). What might this imply for the care of our AYA patient? </li></ul><ul><li>Bolte, 2010 </li></ul>
    13. 13. <ul><li>Higher negative perception of the impact of cancer on QOL impacted lower overall QOL scores </li></ul><ul><li>Age and age at diagnosis did not seem to be significant, however, those younger YA’s did demonstrate higher sexual distress and sexual distress was predictive of overall QOL (p <.004). </li></ul><ul><li>Path analyses indicated that a lower sexual esteem perception may negatively effect a YA’s positive QOL. </li></ul><ul><li>Bolte, 2010 </li></ul>
    14. 14. <ul><li>Theme 1. Late effects of treatment continue to interfere with the sexual self. </li></ul><ul><li>Theme 2. Physical limitations trigger mental limitations that influence the sexual self. </li></ul><ul><li>Theme 3. Perceptions of past sexual self influence perceptions of present sexual self. </li></ul><ul><li>Theme 4. Communication with partners influences perceptions of sexual self. </li></ul><ul><li>Theme 5. Medical procedures negatively influence intimate touch. </li></ul><ul><li>Theme 6. Communication with health care providers highlights the importance of sexual self. </li></ul><ul><li>Bolte, 2010. </li></ul>
    15. 15. The impact of cancer treatments on the physiological , psychological and social aspects of sexuality and sexual function.
    16. 16. <ul><li>Sleep disturbance </li></ul><ul><li>Somatic Complaints: Fatigue, Nausea, Pain </li></ul><ul><li>Late effects </li></ul><ul><li>Depression </li></ul><ul><li>Anxiety </li></ul><ul><li>Fertility, Dating and Disclosure </li></ul><ul><li>Sexual Function? </li></ul><ul><li>Relationship stress? </li></ul><ul><li>Self Esteem / Sexual Esteem? </li></ul>
    17. 17. <ul><li>“ I guess, side effects of post-treatment like my specific case is, I had a bone marrow transplant [3 years ago] and I have transplant rejection issues called Graft-versus-Host. And it’s – I’m being treated for that, so that’s – it’s also introducing a lot of physical limitations in terms of flexibility and skin – my skin is very tight. I mean, just – like, I have trouble bending down on my knees. So, you know, I mean, just trying to bend in certain positions sometimes is impossible or my skin feels like it’s going to rip. So, I mean, that – I mean, I’m talking – like I said, I’m talking physical limitations [around sexual health] is basically the main thing that cancer introduced for me. But that’s not – it also introduced, I suppose, some mental limitations…Well, obviously the physical limitations are, you know, hammering down on my mental state of mind because, okay, I can’t perform, you know, because of this, this and this. And so, I mean, it’s bogging me down like emotionally sometimes I just don’t – I don’t even feel like trying.” (Bolte, 2010) </li></ul>
    18. 18. <ul><li>All treatments that may directly alter sexual routines or function </li></ul><ul><li>Changes in appearance: </li></ul><ul><ul><li>Hair Loss of ALL types! The regrowth may not ever be the same. </li></ul></ul><ul><ul><li>Disfigurement/Weight gain / Weight loss </li></ul></ul><ul><li>Underdevelopment / Sexual Maturation/ P.O.F </li></ul><ul><li>Social isolation, Relationship Avoidant (Hospitalizations, Dr. Visits, etc.). </li></ul><ul><ul><li>Even long after treatment they may feel different or disconnected to their peers, especially if they were an adolescent. </li></ul></ul><ul><li>“ Chemobrain” and/or learning disabilities </li></ul>
    19. 19. <ul><li>They may not know what “normal” or “healthy” sexual function is (e.g. pain from vaginal GVHD) </li></ul><ul><li>Possible decreased ability for high physical activity </li></ul><ul><li>Late effects such as osteoporosis </li></ul><ul><li>Depression & Anxiety </li></ul><ul><li>Hostility or Anger </li></ul><ul><li>Sexual and Self Esteem </li></ul><ul><li>May display high risk behaviors to “compensate” for time lost </li></ul>
    20. 20. Assessment tools for assessing sexuality and intimacy
    21. 21. <ul><li>Routine Quality-of-Life Screening </li></ul><ul><ul><li>Interview and assessment (i.e. PLISSIT model) </li></ul></ul><ul><ul><li>Questionnaires (e.g.): </li></ul></ul><ul><ul><ul><li>Impact of Cancer Scale – now used in peds and survivors (IOC, by Zebrack et al) </li></ul></ul></ul><ul><ul><ul><li>Body Esteem Scale </li></ul></ul></ul><ul><ul><ul><li>Create your own Likert scale with a question inquiring about sexual satisfaction </li></ul></ul></ul><ul><ul><ul><ul><li>i.e. “Over the past three months, how satisfied do you feel about the way you look overall?” </li></ul></ul></ul></ul><ul><ul><ul><ul><li>“ Over the past three months, how satisfied do you feel about your relationship with your boyfriend or girlfriend?” </li></ul></ul></ul></ul><ul><ul><ul><ul><li>“ Over the past three months, how confident do you feel about your sexuality?” </li></ul></ul></ul></ul>
    22. 22. <ul><li>Normalize </li></ul><ul><li>“Part of providing good care to all my patients is knowing about many aspects of their lives. Cancer impacts all areas of your life. One aspect that is important for me to ask about is your sexual history. Everything you tell me is confidential unless I feel it is harmful to you, your treatment or your cancer”. </li></ul>
    23. 23. <ul><li>Generalize </li></ul><ul><ul><li>“Often times long term survivors have questions that come up about quality of life issues, such as sexual health and intimate relationships, that they didn’t necessarily know to ask when first diagnosed. Many survivors may experience some challenges as it relates to their sexual function or questions around sexuality. Do you have any concerns?” </li></ul></ul>
    24. 24. <ul><li>P ermission (Assessment) </li></ul><ul><li>L imited </li></ul><ul><li>I nformation (Education) </li></ul><ul><li>S pecific </li></ul><ul><li>S uggestions (Counseling) </li></ul><ul><li>I ntensive </li></ul><ul><li>T herapy (Referral) </li></ul><ul><li>Annon, 1976 </li></ul>
    25. 25. <ul><li>Chea, 21 year old </li></ul><ul><ul><li>Dx with brain tumor at 10 yrs old </li></ul></ul><ul><ul><li>Pituitary gland impacted, development stunted </li></ul></ul><ul><ul><li>Started on hormone therapy at 15 </li></ul></ul><ul><ul><li>Supportive, educated family (parents together & one older brother, one younger sister) </li></ul></ul><ul><ul><li>Oncologist told him he may want to think about Testicular Augmentation </li></ul></ul><ul><ul><li>Did not know what was “normal” and had a lot of shame </li></ul></ul><ul><ul><li>Never been in a relationship </li></ul></ul>
    26. 26. <ul><li>Obtaining Permission from patient or parent to initiate sexual discussion and legitimize sexual concerns. Normalize and Generalize questions. </li></ul><ul><ul><ul><li>Has cancer affected the way you feel about yourself? The way you view yourself? </li></ul></ul></ul><ul><ul><ul><li>Has this condition interfered with your being (or having) a boyfriend/girlfriend/partner? </li></ul></ul></ul><ul><ul><ul><li>Has this condition affected your ability to perform sexually? </li></ul></ul></ul><ul><li>Remember to make no assumptions about sexual history or sexual orientation </li></ul><ul><li>Also important to remember that there are several young patients we treat who have been sexually traumatized and we may be violating this trust and/or re-traumatizing their experience if we aren’t asking permission to touch them </li></ul><ul><li>Penson, Gallagher, Gioiella et al.2000 </li></ul>
    27. 27. <ul><li>Specific phrases to help open the discussion </li></ul><ul><li>Some girls and boys feel embarrassed or confused about the changes that happen to their body during treatment. Lets talk about that. </li></ul><ul><li>Some people who are going through an illness like yours have been concerned about their sexuality, have you had any concerns? </li></ul><ul><li>Some girls and boys who are getting treatment for their cancer experience changes in the development of their private parts, have you had any concerns? </li></ul><ul><li>You have been through so much since your diagnosis. This may affect the way you see yourself as a teenager and may affect your friendships, how are you doing? </li></ul><ul><li>You must be wondering how all of this will affect you sexually or in your future. Let’s talk about that. </li></ul><ul><li>You have been through so much since your diagnosis. This may affect the way you and your partner interact and the time you take to be together. Often times, intimacy is impacted during the course of treatment. How are you doing? </li></ul><ul><li>(For the parent) Some parent’s put so much energy into their child that they lose interest in other things, especially taking time out to be with their partner. How have you been affected? </li></ul><ul><li>Adapted from: Hornden and Currow, MJA 2003: 179 (6 Suppl): S-8 - S11 </li></ul>
    28. 28. <ul><li>Commonly thought, not always asked questions </li></ul><ul><li>Even though I am cured, can my boyfriend/girlfriend catch the cancer from me if we have kiss? Make out? Have sex? </li></ul><ul><li>Can I still have children? Will they have cancer? </li></ul><ul><li>Can I have sex? What do I need to do to be safe? </li></ul><ul><li>What if everyone makes fun of me when they see me in gym class? </li></ul><ul><li>Is __________________ normal? Will it ever get back to normal? </li></ul><ul><li>I feel weird asking my parents these questions and what if the nurse/doctor tell them? </li></ul>
    29. 29. <ul><li>Providing Limited Information needed to function sexually </li></ul><ul><ul><li>“ I find that a lot of patients I work with… </li></ul></ul><ul><ul><ul><ul><li>experience anxiety around their relationships, </li></ul></ul></ul></ul><ul><ul><ul><ul><li>have a lot of questions about fertility, </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Wonder about how to talk about their cancer with friends or people they are interested in </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Wonder if they will ever be “normal” again </li></ul></ul></ul></ul><ul><ul><ul><li>… from cancer and its treatments” </li></ul></ul></ul><ul><ul><li>Simple as giving each patient or parent: </li></ul></ul><ul><ul><ul><li>Create a Resource List: List of local Endocrinologists, Gynecologists, Sex Therapists, PT’s specializing in pelvic floor exercises, safe sex practices etc. </li></ul></ul></ul><ul><ul><ul><li>Address myths and gently reeducate </li></ul></ul></ul>
    30. 30. <ul><li>No one will want to get involved with me if they find out I had cancer </li></ul><ul><li>I should avoid relationships because I am sexually underdeveloped and I think disfigured - no one will want to be with me intimately </li></ul><ul><li>My doctors tell me “I should just be glad to be alive” </li></ul><ul><li>I will never be able to have children </li></ul><ul><li>My child (or patient) doesn’t want to talk to me about this </li></ul><ul><li>My child is only 15, he doesn’t need this information yet </li></ul>
    31. 31. <ul><li>Giving Specific Suggestions to address issues of sexuality/sexual health </li></ul><ul><li>Some areas of concern: </li></ul><ul><ul><li>Friends’/Partner’s reaction, concerns about attractiveness and rejection or looking different </li></ul></ul><ul><ul><li>Changes in or “what’s normal” sexual function </li></ul></ul><ul><ul><li>“ When do I disclose?” </li></ul></ul><ul><ul><li>Safety Concerns </li></ul></ul><ul><ul><li>Parents fear their child will never be like other kids: date, stay healthy, go to school, have children </li></ul></ul>
    32. 32. <ul><li>Find three things every morning that you like about yourself (mirror exercise). </li></ul><ul><li>Practice Positive Affirmations </li></ul><ul><ul><li>“ I accept my body, I will do everything I can to love and help it heal” </li></ul></ul><ul><ul><li>“ My body supports my healing process” </li></ul></ul><ul><li>Take time to get to know your body </li></ul><ul><ul><li>Touch your scars in the bath </li></ul></ul><ul><ul><li>Find out what does and doesn’t feel good </li></ul></ul><ul><li>Learn to laugh at some of the changes. Humor is healing and attractive </li></ul><ul><li>Surround yourself with positive, supportive people </li></ul>
    33. 33. <ul><li>They need to first get comfortable telling their story: </li></ul><ul><ul><li>Understanding their diagnosis, consequences of treatment and any risks for future are critical for them to know </li></ul></ul><ul><ul><li>Role play with a friend to get comfortable telling your story </li></ul></ul><ul><ul><li>There is no right or wrong amount of time to tell or not to tell - is there a way to slowly disclose or tell all at once? </li></ul></ul><ul><ul><li>Put yourself in the other person’s shoes: how would you react? What would you want to know and not know initially? </li></ul></ul>
    34. 34. <ul><li>Erectile Dysfunction: </li></ul><ul><ul><li>Viagra, Cialis, Levitra </li></ul></ul><ul><ul><li>Penile Pump, Penile Implant, Penile Injections </li></ul></ul><ul><ul><li>Antidepressant medication </li></ul></ul><ul><ul><li>Hormone deficiency? </li></ul></ul><ul><li>Libido & Orgasm: </li></ul><ul><ul><li>Re-explore pleasurable body sensations (do this alone so there is no pressure) </li></ul></ul><ul><ul><li>Changing expectations of desire from a “body thing” to a “mind thing” </li></ul></ul><ul><ul><li>Use vibrators, fantasy or other visual/physical stimulators </li></ul></ul><ul><ul><li>Sensate Focus Exercises </li></ul></ul><ul><ul><li>Hormone therapy? </li></ul></ul><ul><ul><li>Sensitizing Creams, Enhancement aids </li></ul></ul>
    35. 35. <ul><li>Dilator Therapy (best if used early on, whether sexually active or not) </li></ul><ul><li>Vaginal Dryness: </li></ul><ul><ul><li>Remember that some young women won’t know that they are experiencing this </li></ul></ul><ul><li>External Vaginal Dryness </li></ul><ul><ul><li>Artificial lubrication: Astroglide, Gyne-Moistrin, KY Personal Lubricants, Replens or silicone based lubricants </li></ul></ul><ul><li>Internal Vaginal Dryness </li></ul><ul><ul><li>100% Vitamin E oil used daily, Replens or other internal suppositories </li></ul></ul><ul><ul><li>Hormone Replacement Therapy if appropriate </li></ul></ul><ul><ul><li>Plain Organic Yogurt (used internally with dilator or finger) </li></ul></ul>
    36. 36. <ul><li>Write a prescription to encourage the normalcy and decrease shame and/or embarrassment </li></ul><ul><li>Assists in learning to relax vaginal muscles </li></ul><ul><li>Even if patient is not sexually active, it is important to maintain patency for exam comfort </li></ul><ul><li>Scar tissue may form during healing process and possibly years after XRT </li></ul>
    37. 37. <ul><li>Plan time for all intimate interactions around “on” time </li></ul><ul><li>Have friends and family adapt interactions to your needs (i.e. movie, lunch at the house, board game or sitting on the porch, etc) </li></ul><ul><li>Sex or sexual intimacy may not be important, but when it is, plan times when you feel least tired (for parents too) </li></ul><ul><li>Assess for depression </li></ul><ul><li>If pain is impacting ability to participate in any intimate activity, take pain medications 1/2 - 1hr prior to activity </li></ul>
    38. 38. <ul><li>Providing Intensive Therapy surrounding the issues of sexuality for that patient/caregiver </li></ul><ul><li>70% of adult patients only need the first 3 steps of the PLISSIT model </li></ul><ul><ul><ul><li>Know your limits and skills </li></ul></ul></ul><ul><ul><ul><li>Refer to trusted network </li></ul></ul></ul><ul><ul><ul><li>Provide support and compassion </li></ul></ul></ul>
    39. 39. <ul><li>Permission (Assessment) </li></ul><ul><li>L imited </li></ul><ul><li>I nformation (Education) </li></ul><ul><li>S pecific </li></ul><ul><li>S uggestions (Counseling) </li></ul><ul><li>I ntensive </li></ul><ul><li>T herapy (Referral) </li></ul><ul><li>Can work in any health care setting </li></ul>
    40. 40. <ul><li>SO, What about Chea? </li></ul><ul><li>How the PLISSIT helped me, help Chea. </li></ul>
    41. 41. <ul><li>Create an atmosphere conducive to open discussion (privacy, no interruptions, sit close to the patient). </li></ul><ul><li>Introduce the topic and ascertain the patient’s/child’s readiness for a discussion. </li></ul><ul><li>Use open-ended questions to gauge the patient’s/child’s level of understanding and concerns. </li></ul><ul><li>Use a non-judgmental approach based on trust and confidentiality. </li></ul><ul><li>Make no assumptions about the patient’s/child’s relationships, sexuality, intimacy or knowledge about these issues. </li></ul><ul><li>Do not use medical jargon. </li></ul><ul><li>If religious values are important and help guide decision making around sexual choices, then ask them questions, don’t tell them or criticize. </li></ul><ul><li>“ Communicating about sexuality and intimacy with patients who face life-limiting illnesses”, 2001 emja palliative care </li></ul>
    42. 42. <ul><li>“ Today, the physician [nurse or social worker] who treats oncologic diseases should no longer join the collusion of silence about sexuality any more than he should join the collusion of silence about death. Sexuality [and intimacy] is part of life and, hence, a part of cancer patients and their families” </li></ul><ul><li>(Devita, Hellman, Rosenberg. (1985). p. 2055). </li></ul><ul><li>Devita, Hellman, Rosenberg. (1985). CANCER. Principles and Practice of Oncology. JB Lippincott Company, Philadelphia </li></ul>