It's important to understand that not evey person places a priority on sex- it's very individual. Dr. Barbara Andersen at Ohio State University refers to it as one's sexual self schema- and it's derived from your own personal views, social upbringing, culture, and religion. One's sexual self schema guides past, present, and future sexual behaviors and how we process sexually-relevant information.

For women who are concerned about their sexual life, I'd say don't be afraid to bring it up, and don't wait to get asked about it. Studies show that oncologists (no matter if surgical or medical) don't do a great job asking about sexuality and intimacy, but it doesn't mean it's not important. If you are having pain with sex, excessive dryness, or a lack of interest, and it's causing you concern (or creating tension in your relationship) I would seek out advice. Oftentimes the best place to start is with your nurse navigator, infusion nurse, or social worker. Most places also have survivorship centers. If the help is not available locally, find someone who you an see elsewhere. The beauty of the web and sites like talkabouthealth is that everyone can access information- good information. Reach out and get help- whether that be in person or virtually.

Yes, sexual difficulties can lessen! But before talking about specific methods it is important to recognize some basic ideas about continuing your sexual life during or after cancer treatment.

1. Educate yourself. Talk with your doctor, nurse, etc. to learn about the effects of your cancer or your treatments on sexuality. For example, the American Cancer Society (http://www.cancer.org) has two excellent booklets available for a nominal cost: Sexuality for the Woman with Cancer, Sexuality for the Man with Cancer.

2. Keep in touch. Pleasure from touching is possible regardless of the type of cancer treatment one has had. As has often been said, the most important sexual organ is... the brain!

3. Leave routines behind and move forward. We can all have very narrow views of what is “normal” or what the “typical” sex life should be. Cancer is a life disruptor, but it can also offer new ways to experience life, new ways to give and receive pleasure. Often patients’ greatest need is not for sex (the ‘act’) but physical intimacy, such as being held, holding another, or cuddling. The most important step individuals and couple can make is to preserve personal and physical intimacy (touching) times when routines get disrupted.

4. Talk and share information. Good communication is the key to successful relationships, and good communication is essential to adjusting a sexual routine with a partner.

When addressing sexual problems it is important to first appreciate that sexual problems following cancer are common. In particular, the most frequent symptom is a loss of sexual desire. Fatigue can be a powerful contributor, as it remains a significant problem with full recovery taking upwards of 2 years after all cancer treatments end. As noted above, sexual educational materials can be quite important. For women, managing menopausal symptoms relevant to vaginal health should be done. The most common symptom is vaginal dryness, which is usually accompanied by diminished sensation and pleasure and possibly dyspareunia with partnered activity. Many such problems will be reduced if not eliminated with the regular use vaginal moisturizers, such as Replens® and the use of vaginal lubricants, such as K-Y jelly, during intercourse. For women who talk with their physician and learn that they can receive estrogen replacement therapy (ERT is contraindicated for those with breast or ovarian tumors), vaginal treatments (creams, tablets, estrogen-releasing ring) may be an option.

For men, surgical treatments for prostate or testicular cancer may result in significant problems of erection and/or ejaculation that may be permanent. Hormonal treatment for prostate cancer can reduce sexual desire further and cause menopausal like symptoms (hot flashes, sweats). Nevertheless, treatments are available including medication such as Sidenafil (Viagra), erectile injections with medication such as Papaverine, use of constrictive penile rings or vacuum devices, or penile prosthesis surgery (pump devices). All of these treatments can be enhanced with concurrent sexual therapy.

For those with pervasive sexual difficulties, discussion with a physician — such as a gynecologist for women and a urologist for men — is an important starting point to rule in or out physical sources of sexual dysfunction. There after, seeking counsel from a trained, licensed professional whose specialty is behavioral sex therapy is suggested. When seeking such counsel, ask the therapist the first session (or before hand) how many cancer patients with similar difficulties they have previously treated and with what success.

Our group here at Mayo Clinic has been very active trying to understand the impact that myeloproliferative neoplasms have upon patients who are affected. We found in 2007, in an internet-based questionnaire of over 1000 patients with MPNs around the world, that patients are quite symptomatic with difficulties of fatigue, night sweats, fevers and weight loss. These symptoms are most problematic in myelofibrosis, but can be present in patients with P vera and ET. We subsequently developed and now have in multiple languages the Myeloproliferative Neoplasm Symptom Assessment Form. Using this form of 27 different questions, we have been able to demonstrate the impact that MPNs have on patients with many common side effects being those associated with the size of the spleen, but many which are independent of the enlargement of the spleen including fatigue, itching, difficulty with sexual function or intimacy, insomnia, pain, weight loss. These instruments both help us identify the impact that the diseases have prior to a therapy and hopefully we can use these instruments or questionnaires to identify benefit that these medicines bring to patients who receive them.

Psychological or behavioral intervention can be enormously helpful. Optimal sexual function is really at the intersection between mind/body/relationship and when any one of these aspects is disrupted, intervention is called for. For example, when a survivor is struggling with feeling a sense of being comfortable in his or her body after going through intensive and/or invasive cancer treatment, a variety of strategies that address thinking, feeling and behavior can be used to help a person renew a sense of body integrity. Another example is thinking about the relational aspect of sexuality. Sometimes counseling can be very helpful for couples who are struggling to renew intimacy after a long time has passed. Partners are often very worried about not wanting to hurt each other and sometimes the transition from being a patient or a caregiver to being a romantic partner feels awkward. Some brief couples counseling may be very useful in such a situation.

There are many important issues that are relevant for both men and women after cancer. First, it is critical to acknowledge that everyone deserves to optimize quality of life after cancer and sexual health is a part of that quality of life. Second, I think it is important to remember that sexuality is much broader than intercourse or a specific physical act. Sexuality encompasses how we think and feel about ourselves, about our bodies, about how we feel in relation to other people. Not everyone experiences sexuality in the same way, but more importantly, if something is different and distressing in any way after cancer treatment, then it is valid and worthy of attention. Finally I would also emphasize that under any circumstances, sexual function changes over time. Sexual function looks different at age 20 versus age 40 or age 60 even without cancer. The goal is always to optimize sexual function yet acknowledge that sometimes things change and they can never be exactly how they used to be. That said, when cancer treatment causes disruption, this can present an opportunity for an individual or couple to “expand the repertoire”; instead of trying to regain a sex life that looks exactly the same as before, a couple can actually broaden their experience. For example, sometimes couples learn to communicate more honestly and directly about both physical and emotional intimacy. Often before cancer, many couples never really have to talk about sex that much because things worked well enough. This kind of change in communication can itself bring a new level of closeness that is very satisfying.

There are a number of common sexual problems that we see with our female cancer survivors. For women, changes in arousal, desire, and orgasm are common. Also, pain or discomfort associated with sexual activity, is common and needs attention. We also see changes in body image, decreased self-esteem, increased anxiety and worry related to intimacy. Again, we see treatment-induced menopausal symptoms that are very severe and unpredictable. Most importantly, I would say that many of these problems do not get better by themselves. For example, severe vaginal dryness for women can lead to vaginal atrophy. A problem like this calls for intervention and by not attending to the issue of atrophy, symptoms may worsen over time. I think it is important to take a pro-active approach to dealing with such common sexual side effects.

This is a delicate topic, and there is no one right answer. Some patients want to know from the beginning, while others who were recently diagnosed, are more concentrated on the "fight" ahead, living through treatment, and beyond the cancer. The most appropriate time to discuss it is when the patient wants to know. For some women, we talk about it as part of the treatment discussion. It can help when there are multiple choices available. For others though, we wait until the "acute" period is over, at which time we can concentrate on finding the way to navigate post-treatment and the "new normal".

The best treatment is education- understanding what is happening and why. Some of the research I did at Women & Infants Hospital looked at the benefit of a formal evaluation in a clinic specializing in sexual health and intimacy. It turns out that the consultation alone was associated with improvements in sexual function and quality of life. I think the reason for this is that consultation allowed women a forum to discuss sexual health without embarassment and also was a way for them to get information on female sexual function and how treatment has impacted it. They say knowledge is power- and in this case it is certainly true.

Female sexual dysfunction is far more complicated than male sexual dysfunction, and a large part of the approach to treatment is figuring out what to treat. For women who went in to early menopause due to cancer therapy, the vaginal symptoms (dryness, chafing) can be extreme. There are both nonhormonal and estrogen related treatments. For others who have vaginal tightening or shortening due to surgery or pelvic RT, additional options include the use of vaginal dilators. There is no good evidence to support the use of testosterone in female cancer survivors, so I don't recommend it.

Ultimately, treatment requires a balanced discussion between benefits and risks, particularly with estrogen preparations, and close follow up. Running the sexuality and intimacy clinic has been one of my most amazing experiences, though. I have seen women get better and rediscover themselves as sexual beings, and that is incredible!

I had called Share more than once when I was diagnosed with breast cancer. Talking to the women on the hot line was immensely comforting. After all, they had what I had, and they were still alive. When I saw a notice in the Share newsletter asking for volunteers for the hot line, I knew I wanted to provide that comfort to other women.


I called and was scheduled for several weeks of evening training sessions. As a group, we discussed how to be good listeners, what a hot-line volunteer should and shouldn’t do (we don’t provide medical advice, for example, but we do give information about community resources), and how to use the telephone (though I still fumble the Hold button and lose calls).


Then I was scheduled to shadow a seasoned volunteer for a three-hour shift once a week. Eventually, I took over that shift. I still remember how nervous I was on my first call. I was concerned that I might say something that would upset the caller.


Nowadays I feel confident that I do more good than harm, but even today there are times when I go home and lie awake wishing I’d handled a call differently. I want every woman who calls to know that I’m listening, that I’m doing my best to understand and that I care about her and what she’s going through.


I love my work on the hot line. There is an instant intimacy you feel with women who are struggling with life-and-death issues. I’ve had conversations with callers that I haven’t had with my closest friends. After all, I have a lot in common with the women who call Share. I was on their end of the line not so long ago.

As soon as a patient is diagnosed with cancer they are inundated with all kinds of information on all the different modalities that they may experience regarding cancer. Their diet, physical activities, side effects and the everyday process of elimination are discussed to the fullness. But with all this information given to them the one subject that is glossed over or not discussed at all is sexuality. It appears that there is an 800-pound guerilla of sexuality in the cancer patient’s room and no one wants to talk about it.

All too often it has nothing to do with the patient but it has to do with the healthcare professional who may have a barrier between talking to the patients regarding sexual intimacy and their own feelings about their sexual attitudes. Many times a healthcare professional may assume someone of a certain age is to old to engage in sexual activities and will not bring up the subject at all for discussion.

Furthermore, not only should there be an open dialogue with the cancer patient pertaining to sexual issues, but their partner’s needs should also be address as well.

With understanding that sexuality is an integrated part of a normal life, nurses can help to navigate the many phases that their patients may encounter with reference to sexual intimacy.