Prostate Cancer Canada Network - NEWMARKET Volume 24, Issue 7 March 14, 2019

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1 Prostate Cancer Canada Network - NEWMARKET Volume 24, Issue 7 March 14, 2019 A support group that provides understanding, hope and information to prostate cancer patients and their families. Topic for the upcoming March Meeting Yes, it s that time again, another opportunity for us to get together as a group and talk about it. Come with your concerns, journey, stories and questions to our next group peer-to-peer discussion. Always informative, maybe even entertaining. See you there! Peer-to-Peer Discussion Meeting Date: Thursday, March 21, 2019 Place: Newmarket Seniors Meeting Place 474 Davis Drive, Newmarket Time: 6:30 pm to 9:00 pm Prostate Cancer Canada Network Newmarket Newmarket, ON info@newmarketprostatecancer.com A member of the Assisted by Canadian Cancer Society, Holland River Unit (905) Cancer Information Service: Your Executives Chairman (To Be Determined) Phil Mahon, Secretary Sam De Simone, Treasurer Dave Adams, Membership Mike McMaster, Newsletter Pat McMaster, Communications Bob Forbes, Member at Large Michael Artichuk, Member at Large JL Leduc, Greeter The Newmarket Prostate Cancer Support Group does not recommend products, treatment modalities, medications or physicians. All information is, however, freely shared. 1 of 6

2 For the month of February our guest speaker was Kim Hartsburg- Lang. Kim graduated as a registered nurse in 1977 from the Victoria Hospital School of Nursing, Fanshawe College in London Ontario. Kim is currently working at the Barrie Urology Group in the role of urology resource nurse. Prior to her joining Barrie Urology Group she was a primary nurse in Radiation Oncology at the Peel Regional Cancer Centre where she was an active member of the Brachytherapy planning project as the nurse champion. Kim has won awards for nursing excellence and was a nominee for the Toronto Star Nightingale Award in She has been involved in the development of both male and female sexual health programs providing counselling and education to these patients. She most recently assisted in expanding and developing the Sexual Health Program at the Simcoe Muskoka Cancer Centre. Kim Hartsburg-Lang Editor s Note: Historically, our monthly newsletter tries to capture the information provided by our guest speakers verbatim - or at least as close as we can get to it. This month, however, due to the proprietary nature of Kim s presentation, that approach was inappropriate. We have instead created an article that summarizes the information presented which was very well received by those that attended. We thank Kim for her presentation and insight and hope you enjoy the read. Sex and intimacy after prostate cancer treatment can be a challenge for any couple. Kim Hartsburg-Lang feels passionate about the subject and has put together a presentation and hosts workshops that try to provide some insight and help to couples affected by prostate cancer. Within the last year she made a trip to Newmarket to give a talk to Dr. Liquornik and the oncology nurses at Southlake Regional Health Centre. The subject of her talk with them was how to talk to prostate cancer patients about sex, a subject that she feels is currently not well addressed within our healthcare system. Kim began her presentation by thanking the Simcoe Muskoka Regional Cancer Program and, specifically, Monique Voorm, who is a social worker there. Kim and Monique have worked closely together to develop prostate cancer intimacy workshops for couples that run every 4 months. They do take couples outside their catchment area for these workshops. On Valentine s Day and they had a workshop and had 8 couples at it and that was the largest turnout they have had. Kim also wanted to thank Lynne from Astellas Pharma Canada for her ongoing support for the Sexual Health and Intimacy Program in Barrie. The focus for the evening s talk was how prostate cancer affects a couple s sex life and she wanted to help couples understand how the different treatments affect your sex-life differently. She also wanted couples to understand where and how to get some help and guidance on how to maintain intimacy in their relationship. While cancer treatment may affect sexual health and your relationship, sexual activity does not need to stop. What is known is that at the time of diagnosis of prostate cancer sexual function can be disturbed. When you choose a treatment for prostate cancer there isn t one that doesn t have an impact on your erections and your sexual relationship with your partner; and that is a long-term condition. Sex doesn t need to stop; it might look different than it did before your treatment but it does not need to stop. The Importance of Early Intervention Early intervention in the treatment of erectile dysfunction (ED) is a huge benefit in starting some form of regaining and maintaining your erections and sexual intimacy. One couple who recently attended one of Kim s workshops wanted to get all the information they could ahead of time rather than after the surgical procedure. They wanted to know what to do and how to do it in order to maintain their sex-life. At the end of the workshop they did say it was very beneficial to have gained the information before they proceeded to surgery. Early intervention is something patients should be encouraged to pursue before, rather than after, their procedure. Grieving a Loss Many couples will admit that the loss of their sex-life is probably the most distressing, long-term side-effect of their prostate cancer treatment. Data shows that this loss is real and it is important to acknowledge and normalize how this has made you feel. Never underestimate what grief you may experience with the loss of your erections. Some men actually feel as if they have lost their best friend. When you lose something special or someone really close to you, you grieve that loss. It is important to acknowledge your 2 of 6

3 While cancer treatment may impair sexual function sexual activity need not end feelings of how the loss of your erections has made you feel. Couples that successfully regain and maintain intimacy in their relationship are couples that grieve that loss together and share their feelings. Communication within your relationship is a key element in maintaining sexual intimacy; you cannot be successful using erectile aids, for example, if you have not discussed it with your partner. Any re-evaluation of your sexual values can only be done by communicating with your partner. Treatment Side-Effects At our Newmarket support group meetings we wear name badges that have coloured dots on them. The dots represent the type of treatment you have had; red is for surgery, blue is for radiation, yellow is for hormone treatment or chemotherapy and green is for active surveillance. Kim next talked about each treatment and what the possible side-effects of that treatment might be. Surgery Side-effects The prostate gland is surrounded by nerves, and when they remove the prostate, depending on what your Gleason score is and how much cancer is actually in your prostate, it will affect whether or not your surgeon can spare those nerves - those nerves impact regaining your erections after surgery. If you had a radical prostatectomy you can ask your surgeon if you had nerve sparing surgery because they make notes during the surgery that they can refer to later. With a radical prostatectomy there is a 50:50 chance of erectile dysfunction (ED) after surgery. Erectile dysfunction after surgery is immediate and you have to regain and rebuild erectile function. Other possible side-effects after surgery include: Anejaculation which is the absence of ejaculate - once the prostate is removed you will not have ejaculate, the main purpose of the prostate is to create the seminal fluid; Anorgasmia is the absence of orgasm; Dysorgasmia (painful ejaculation) can occur after surgery; Climacturia is the leaking of urine - 25% of men will experience this after surgery. Bladder control can take some time to regain after surgery; most urologists will tell you it will take 6 to 12 months. Certainly start doing your Kegel exercises as soon as your urologist tells you it is alright to initiate that after surgery. Urologists will often recommend pelvic physiotherapy but usually not until a year or year-and-a-half after surgery. Sphincter repair is a surgical option to restore urine control and there are also clamps, Dribble Stop is one brand available. Kegel exercises are very important; according to Kim you can never over do enough Kegel exercises which tighten the muscles of the pelvic floor. When they remove the prostate the length of the penis can be reduced because the cartilage inside the body is affected by the surgery and makes the penis hang differently and look shorter sometimes it can be as much as 1 cm but some people don t notice it at all. In less than 10% of men penile curvature can change. It may take up to 4 years after your surgery to regain your erections; the nerves around the prostate need to be completely healed before you start having any natural erection or activity. Often, these nerves need to be healed before Cialis or Viagra will work; and nerves do not heal quickly, nerves can take up to 12 months before they are completely healed. Certain things can affect your recovery: If you had good erections before your surgery then you have a better chance, it can affect your recovery by 60%: Age is a big factor, men over the age of 65 will probably have less of a chance of regaining full erections at the 4 to 5 year mark: Heart disease, diabetes, high blood pressure and high cholesterol, all impact erections and negatively impact your recovery. With depression, some of the anti-depressants on the market affect erections and they can also affect orgasms as well. Radiation Side-effects There are currently many types of radiation; Kim has been out of radiation for 5 years and has noticed many changes have occurred in that time. They are now using SBRT which is highdose and you have fewer doses compared to the 33 to 39 treatments that used to be the standard of care. Brachytherapy can be low-dose with seed implants or high-dose with radioactive seeds applied directly to the prostate and then removed. The ED that occurs from radiation is a delayed response. This is because the radiation creates scar tissue which reduces the blood flow over a course of time. You may not see any affect 3 of 6

4 from the radiation until maybe 1 or 2 years after you have completed your treatment. The key thing is to maintain the blood flow during that time period, so don t wait till it starts happening, remain sexually active. There is some data to show that during radiation treatment a daily dose of Cialis is enough to maintain and open the blood vessels, so that reduces the chance of long-term side-effects to your erections. With the new radiation techniques that are available like IMRT and SBRT, there is not enough data yet to see if these treatments are going to affect the incidence of ED post radiation. If your erections were really good before your radiation treatment this certainly will delay the onset of ED and can delay it up to 4 to 5 years after your treatment. (Editor s Note: IMRT = Intensity-Modulated Radiation Therapy. SBRT = Stereotactic Body Radiation Therapy.) Hormone Treatment (ADT) Side-effects ADT (Androgen Deprivation Therapy) takes away the most important sexual male hormone in your body which is testosterone. One of the main side-effects from ADT is ED; it is almost certain your erections will disappear, and not only your erections, but your desire to have sex. Your brain is still there but it takes a little more work, even hugging and kissing may become something that is not important to you. Decreased ejaculate can occur; the quality of your orgasms may disappear or change. Changes to your body composition will occur; most men may gain a little weight for example. Your muscles change, you lose muscle mass because testosterone helps build your muscles. You will notice genital shrinkage; sometimes your testicles become quite small. All of these things are body changes and affect body image and how you feel about yourself. Hot flashes are probably one of the most common, bothersome side-effects from ADT. They can be managed in many ways but they certainly impact the way you are feeling. Fatigue is certainly one of the main side-effects; it may seem like a contradiction but exercise is a key remedy for this. Mood and concentration changes are often under reported while on ADT; feelings of sadness, becoming more tearful or more irritable is typical. The Sexual Response Cycle Before: Arousal After: Activity Masters and Johnson created a sexual response cycle in This cycle did not take into consideration cancer, illness, stress or cultural diversity; however, it remains the basic reference to demonstrate how we, as humans, respond in a sexual way. 4 of 6 The model begins with spontaneous desire or the urge to have sex as your starting point. You look at your partner, get turnedon, you have an erection and that was it that was your cue that you wanted to be with your partner - now that has changed. After your prostate cancer treatment your erection has disappeared; that natural response when you look at your partner - the erection - is not there. You now have to change to receptive desire, no longer are you spontaneous. What has happened after your prostate cancer treatment requires you to think more, be more active in order to become aroused - gone are the days that it just spontaneously happens. Sexual activity can begin by extending an invitation to your partner, asking if they want to play around for awhile. Communication is the key. You will need more sexual activity to become aroused and that can be done through erotica, fantasy or you may have to spend more time in foreplay. Before your treatment you looked at your partner and were aroused, you then engaged in sexual activity. What happens after your treatment is that you require some form of sexual activity before you become aroused. That activity can be talking about sex, watching movies together or recreating intimacy through pleasure and touch. You require the activity to get aroused before you can engage in sexual activity. It takes a little bit more work than it did when you were 16. Getting no erections is a turn-off; you may feel inadequate, you re embarrassed. You ask yourself: What do I say to my partner? It may lead to feelings of being a failure. It is important to acknowledge those feelings and communicate with your partner. This sense of loss is a huge hurdle and it is important to normalize how this has made you feel. Because when you start to engage in sexual activity you start having all these feelings that regenerate all these horrible feelings of grief. You almost choose to ignore any sexual activity because you want to avoid these negative feelings.

5 The Importance of Communication Refocusing your thoughts to engage in sexual activity to get aroused is not easy, that is not how you were programmed. It is important when you are sharing and communicating with your partner to evaluate your sexual values: What is important? Do you value sex for physical pleasure or emotional pleasure? It is important to share how you feel and understand how your partner feels and what they feel is important. Your partner may not feel that penetrative sex is that important. Couples that are able to communicate are successful in regaining and maintaining intimacy in their relationship. Men with prostate cancer experience changes but that does not mean sex and intimacy with your partner have to stop. The nerves around the prostate are responsible for your erections; the nerves for orgasms come from your lower spine a totally different pathway. Your orgasms might change after you have had your treatment; they might be more intense, some men describe that they are better. But, you may require more intense stimulation for a longer period of time to create and have pleasurable orgasms. Bedroom Aids There are many bedroom aids that may help: a vibrator, for example, provides a more intense stimulation and helps your partner from getting fatigued. You may require more mental, erotic thoughts; the use of fantasy can help. You may have to explore new and different ways like dildos, vibrators and lubricants. Women change as they get older as well so an important aid is lubrication. A Fulfilling Sexual Relationship A fulfilling sexual relationship involves being able to experience mutual excitement with both parties being able to give and receive pleasure; it also involves both parties wanting to be there which is the opposite of dutiful sex; and finally, there should be a feeling of being accepted, loved and wanted. If you put sexual activity on the backburner it will wane away. Use it or lose it, is a common expression that describes this concept. The longer you wait to re-engage with your partner the harder it becomes so try to maintain a healthy sex-life. Masturbation is a good way to maintain erectile function; Kim suggests you should never ignore your penis. It is probably the healthiest way to maintain blood flow to the penis; it opens the blood vessels and maintains blood flow. It may increase your desire for intimacy as well. Some alternative sexual practices ideas may seem odd or unusual to many but they are, after all, only suggestions, nothing is mandatory. The most success for couples is associated with flexibility and being open-minded about these things and to be successful the conversation must start outside the bedroom. Erectile Dysfunction Aids 5 of 6 Erectile aids include; intracavernosal (penile) injections; PDE5 inhibitors like Cialis and Viagra; constrictions rings; vacuum pumps; dildos; and penile implant surgery. Whatever you may choose it is important to have the discussion with your partner about how important penetrative sex is to you as a couple. Alternatives can include sensual touching, oral sex, mutual masturbation and hand-held sex toys. Above all, be patient, this is all new and takes time. Conclusion Prostate cancer does not have to mean the end of your sex life. The sooner you seek help for your sexual health the better off you will be; having said that, it s never too late to get help with your sexual health concerns. Schedule regular sexual encounters with your partner. Remember, you can always ask your urologist, oncologist or family physician about where to get support for your sexual health questions. And finally, Cancer Care Ontario has a website intimacy and sex guide. Kim Hartsburg-Lang Contact Information Kim Hartsburg-Lang Barrie Urology Group 1 Quarry Ridge, Suite 206. Barrie, ON., L4M 7G Ext. 7 kimhartsburglang@gmail.com

6 THE BACK PAGE The Importance of Identifying Anxiety and Depression in Men With Prostate Cancer It is normal for a person receiving a cancer diagnosis to experience a wide range of emotions. Fear, anxiety, sadness, and depression are among the most prevalent. The type of cancer, stage, and treatment modality may all affect a patient s emotional state. It seems logical to conclude that patients with prostate cancer generally regarded as highly treatable and the most common type of cancer among men suffer a relatively lower rate of psychosocial distress compared with people receiving diagnoses that typically have poorer prognoses and outcomes. However, men with prostate cancer commonly feel significant anxiety and depression. CancerCare and Us TOO International surveyed 633 patients with prostate cancer regarding their feelings of anxiety and depression. Seventy-seven percent of the respondents said they had experienced symptoms of anxiety or depression following diagnosis, 94% thought it was normal for patients with prostate cancer to feel anxiety and depression, and 97% felt there was a need to help patients recognize these symptoms and find treatment for them. Men tend not to seek help for psychosocial issues and notably less often than women do. This is borne out by survey results that suggest men with prostate cancer would benefit from support groups; however, they seldom attend them, and other data show that women outnumber men 3:1 in cancer support groups. There are myriad reasons for this. Power, physical strength, dominance, control, and toughness are the typical qualities that define the role of a man in society. For men, neediness and asking for help are considered signs of weakness. Men do not like to appear emotionally vulnerable; instead, they often expect that feeling emotions should fall to a spouse, partner, or relative. Stereotypically, men are expected to be logical and make decisions based on the analysis of information. When they do reach out to their doctors and nurses, it is often for support of the informational, not emotional, variety. Because prostate cancer affects the reproductive, urinary, and gastrointestinal systems, embarrassment and shame are often attached to this diagnosis. Already feeling shamed by being seen as a patient (and therefore in a weakened state), adverse events such as incontinence and erectile dysfunction may exacerbate anxiety over what a man s future level of functioning in these areas might be. All of these factors may lead a patient to hide his feelings even more deeply from medical staff and to refrain from divulging his feelings to his family and loved ones. It is important for clinicians to create an environment where men feel comfortable sharing their concerns. One way to do this is to tell men with prostate cancer that it is normal to feel a certain amount of anxiety and sadness and that these feelings can be mitigated by psychosocial support such as counseling and support groups. Also, study data show that patients who receive strong emotional support may benefit from a protective effect on health outcomes. These patients are more likely to follow their treatment plans, whereas patients who are depressed might be inclined to feel treatment is useless or give up on it. An important first step to helping a male patient with prostate cancer cope with emotional issues is to help him identify his feelings: Determine whether he is experiencing anxiety, depression, or both, and note that anxiety and depression are not the same and may require different interventions and treatments. A certain amount of anxiety occurs in daily life for most people. This situational anxiety occurs frequently for patients with cancer before having a medical test like a scan or a treatment like radiation. This is different from pervasive anxiety that interferes with daily functioning and may include symptoms such as gastrointestinal distress, chest pains, elevated heart rate and blood pressure, or suddenly breaking into a sweat. Depression is a medical disorder characterized by feelings of sadness and a loss of interest in activities once enjoyed, and it may be characterized by hopelessness, despondency, abnormal sleep or eating habits, loss of interest in sex, feelings of worthlessness, the desire to harm oneself, or suicidal thoughts. Men with prostate cancer may already feel diminished in the eyes of others and, subsequently, may reject the interventions that can help mitigate anxiety and depression. Support groups, individual counseling, or a prescription for anti-anxiety or antidepressant medications may be highly useful, but these solutions are sometimes seen by men as further signs of weakness. Nevertheless, all of these options should be made known to patients with prostate cancer. It can be helpful to reassure men with this diagnosis that their innate distaste for these interventions is normal and to make clear that these interventions are often helpful and may lead to better quality of life and improved medical outcomes. Andrew Chesler, MSW, LMSW Andrew Chesler, MSW, LMSW, is Men s Cancers Program coordinator at CancerCare. 6 of 6