The tricky topic of sex after cancer diagnosis

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Imagine a once vibrant, but now terminally ill and often pain-racked 30-something woman having careful and tender parting sex with her husband.

Pretoria sexologist Petra Burger granted this wish to one of her patients. This case kept an audience of professionals engrossed during a seminar on sexuality and palliative care last week. 

Burger is a disability management and psychosocial palliative care specialist, a sparsely populated field in South Africa, where the burden of cancer is projected to double by 2030.

Sexuality and intimacy are mostly ignored because neither patients nor doctors are comfortable or sufficiently skilled to broach the subject.

In South Africa and other lower-and middle-income countries, sexologists are a rare breed of healthcare professional and managing patient sexuality and intimacy is not taught at medical schools, with few courses offered in continuing professional development.

Ros Boa, a Cape Town sexual medical practitioner with a special interest in oncological sexuality, says: “People — cancer patients in this case — feel doomed to never being able to be sexual again. It’s about giving people permission. There’s a massive need and it starts with us as healthcare providers. It’s a topic that’s seldom addressed. A human being never stops being a sexual being.”

Burger, a social worker who is disabled, worked for the Hospice and Palliative Care Association of South Africa and is now in private practice, told the audience that awareness of their own conceptions of human sexology was vital.

“We need to be sensitised towards sexuality and understand that it’s a basic human need. If you’re not comfortable, please go and address it. And if you are still not comfortable talking about human sexuality, refer to someone who is,” she said. 

“If you are uncomfortable, you may do more harm than good and subconsciously exacerbate the patient’s discomfort. There are so many misconceptions — such as that disabled or palliative care patients are asexual; can’t enjoy sex or be sexy; that sex will make them sad; a palliative care patient won’t reach a climax, and that the patient will die, the last being the most common.” 

Burger said that everybody could enjoy sex in some way, regardless of their condition.

“Experiment and feel comfortable with your own body image and desires. There’s more than one position. Experiment. It’s more than penetration. You may find that a disability makes penetration difficult or simply hard work, but you can easily enjoy manual or oral stimulation. 

“I’m sometimes quite shocked by people’s perception that penetration is the most important thing. It’s not. It’s about love and intimacy.” 

Burger said almost 80% of her patients needed to find sexual positions that worked for them.

Five things were “almost the holy grail” of treatment choices, she said. These were hypertension, pain management, general weakness, fatigue and incontinence.

For example, hypertension could cause a sudden spike in blood pressure, while pain medications influenced serotonin levels, leading to zero, low or high sex drive.

“There’s also nothing wrong with sex by appointment. You need to choose a time when pain levels are at their lowest. What time of the day is the fatigue at an absolute minimum? Does the patient have an in-dwelling catheter? When was their last bowel movement?”

One recent case that evoked both sadness and happiness for Burger was a 35-year-old woman with stomach and pancreatic cancer that had spread to her liver. The patient had been diagnosed at stage four a month previously. She was in renal failure, could not drink or swallow, and her pain levels were “intense”. 

“About five days ago, I asked her what legacy or memory she wanted to leave. She said, ‘Please, I just want to have sexual intercourse with my husband a last time.’”

Burger said this was a difficult request, given her condition, but she had discussed it with the husband, a big man, who worried that he would hurt his wife, who had lost 40kg.

“To facilitate this in the hospital, I asked the staff to close the doors of the room and all walk away, telling them they have a bell to ring if they need help. The husband was fully prepped but very worried she would stop breathing. He opted for non-penetration, just to stimulate her, which we made possible. She passed the next day. Her last words to me were: ‘Thank you, thank you.’”

Most patients were keen to talk, if the healthcare provider “opened the door” to the topic, Burger said, adding she collaborated with a multidisciplinary, holistic team with referrals being customary practice.

“I come from a typical Afrikaner boerehuis where these things were seldom, if ever, discussed. You have to take account of diverse cultures and languages. 

“We have extreme gaps between cultures. You just have to adapt,” she added.

Burger and Boa were speaking after a session on Breaking the Taboos Around Cancer and Sexuality at the World Cancer Conference in Geneva, Switzerland, earlier this month.

Sophia Sleeman, a Hodgkin’s lymphoma cancer survivor and youth ambassador for the European Cancer League, illustrated her own problems in a session at the conference titled Cancer and Sexuality in Adolescents and Young Adults. 

These are people aged 18 to 39.

Sleeman said she had been diagnosed a decade ago, at the age of 18, having just begun her first meaningful relationship.

“I was ready to leave the nest and explore the world but instead I ended up in hospital with people my parents’ and grandparents’ age. I had only just started dating. You can imagine how lost and lonely I felt.”

She said she had a “serious chat” with her boyfriend, telling him he could still walk away, although she didn’t want him to, adding that in a couple of weeks, she would be bald and feeling unwell.

“I was really scared. I later found out my mum had had the same talk with him and told him he was either the whole way in or to get out. 

“That’s not quite the relationship goal I had in mind, so you can imagine how much weight this put on us. How do you survive falling in love for the very first time, ready to explore your sexuality, and getting diagnosed with cancer at the same time? 

“I mean my first time having chemo was before my first time of having sex. I didn’t want my first time having sex to be bald. It was a very confusing time.”

Sleeman said she remembered sitting on her bed at home, grabbing a handful of condoms from a “secret drawer” nearby, and impulsively throwing them at her boyfriend.

“I said: ‘Okay, we’re doing this now, because I still have my hair.’

“During this entire shit show, nobody in the hospital spoke to me about cancer and sex. One chemo nurse said, ‘Just remember to wear a condom’ … I mean, I could have guessed, but there was no time or space to discuss this. 

“I had so many other questions. As young adults we don’t have a defined solid sexual identity or history yet. We’ve just begun writing this part of our story.”

She said a global data search showed that 6.54% of all cancer patients were adolescents and young adults with a broad spectrum of tumour types but that 80% survived. 

“So, we’re a rare cohort with unique needs that differ from paediatric and older patients. It’s the start of adulthood with a disruption of education, a loss of independence, healthy connection to peers, in the starter job market, insurance and mortgage problems, a lowered self-esteem, less body confidence, changed appearance, disturbed sexual development, troubled relationships, and family planning issues,” she said.

In stark contrast to South Africa, in Sleeman’s home country of the Netherlands, two-thirds of all hospitals have age-specific sexologists, counselling patients and teaching colleagues. 

Two studies in the Netherlands, one quantitative and one qualitative, showed that 90% of adolescents and young adults and healthcare professionals considered communication about sexuality the most critical issue to address, with only 21% of patients satisfied with the information given. 

Most healthcare professionals surveyed thought physicians and nurses were responsible for discussing sexuality while most patients preferred talking to nurses and sexologists.

The Dutch survey points to the most effective tool being a universally accessible, mediated website or a conversation with a healthcare professional (66.1% and 64.3%, respectively).

Hans Neefs, a Belgian psychologist with the Flanders-based organisation Stand Up to Cancer, told the conference one of the main barriers to discussion included an assumption by the healthcare professionals that intimacy and sexuality issues were temporary. 

“Patients feel embarrassed, they’re focusing on surviving the cancer during treatment, expect the healthcare professional to introduce the topic and experience a lack of privacy and time pressure to discuss the topic during medical consults,” he added.

Boa said with South Africa’s burden of cancer growing fast, and having been aggravated by Covid lockdowns and infection fears, it was essential for healthcare professionals to rapidly educate themselves about this field.

“It’s not just youth, but all age groups. With new techniques and wonderful new cancer treatments, a lot more people are living into old age,” she added.

Imagine a once vibrant but now terminally ill and often pain-racked, 30-something woman having a careful and tender parting sex with her husband.

Pretoria sexologist Petra Burger granted this wish to one of her patients. This kept an audience of palliative care professionals engrossed during a seminar on sexuality and palliative care last week. 

Burger is a disability management specialist and psychosocial palliative care specialist, a sparsely populated field in South Africa, where the burden of cancer is projected to double by 2030.

Sexuality and intimacy issues are mostly ignored because neither patients nor doctors are comfortable or sufficiently skilled to broach the subject.

In South Africa and other lower-and middle-income countries, sexologists are a rare breed of healthcare professional (HCP), and managing patient sexuality and intimacy is not taught at medical schools, with few courses offered in continuing professional development.

Ros Boa, a Cape Town-based sexual medical practitioner with a special interest in oncological sexuality, says: “People — cancer patients in this case — feel doomed to never being able to be sexual again. It’s about giving people permission. There’s a massive need and it starts with us as healthcare providers. It’s a topic that’s seldom addressed. A human being never stops being a sexual being.”

Burger, a social worker who is disabled and who worked for the Hospice and Palliative Care Association of South Africa and is now in private practice, told the audience that awareness of their own conceptions of human sexology was vital.

“We need to be sensitised towards sexology and understand that it’s a basic human need. If you’re not comfortable, please go and address it. And if you are still not comfortable talking about human sexuality, refer to someone that is,” she said. 

“If you are uncomfortable, you may do more harm than good, and subconsciously exacerbate the patient’s discomfort. There are so many misconceptions such as that disabled or palliative care patients are asexual, can’t enjoy sex or be sexy, that sex will make them sad, a palliative care patient won’t reach a climax, the patient will die, the last being the most common.” 

She said everybody could enjoy sex in some way, regardless of their condition.

“Experiment and feel comfortable with your own body image and desires. There’s more than one position. Experiment. It’s more than penetration. You may find that a disability makes penetration difficult or simply hard work, but you can easily enjoy manual or oral stimulation. I’m sometimes quite shocked by people’s perception that penetration is the most important thing. It’s not. It’s about love and intimacy.” 

Burger said almost 80% of her patients needed to find sexual positions that worked for them.

Five things were “almost the holy grail” of treatment choices, she said. These were hypertension, pain management, general weakness, fatigue and incontinence.

Hypertension could cause a sudden spike in blood pressure while pain medications influenced serotonin levels, leading to zero, low or high sex drive.

“[T]here’s also nothing wrong with sex by appointment. You need to choose a time when pain levels are at their lowest. What time of the day is the fatigue at an absolute minimum? Does the patient have an in-dwelling catheter? When was their last bowel movement?”

One recent case that evoked sadness and happiness for Burger was a 35-year-old woman with stomach pancreatic cancer that had spread to her liver. The patient was diagnosed at stage four a month ago. She was in renal failure, could not drink or swallow and her pain levels were “intense”. 

“About five days ago, I asked her what legacy or memory she wanted to leave. She said, ‘please I just want to have sexual intercourse with my husband a last time’.”

Burger said this was a difficult request, given her condition, but she had discussed it with the husband, a big man who worried that he would hurt his wife, who had lost 40kg.

“To facilitate this in the hospital, I asked the staff to close the doors of the room, and all walk away, telling them they have a bell to ring if they need help. The husband was fully prepped but very worried she would stop breathing. He opted for non-penetration, just to stimulate her, which we made possible. She passed the next day. Her last words to me were ‘thank you, thank you’,” she said.

Burger said most patients were keen to talk if the healthcare provider “opened the door” to the topic, adding she collaborated with a multidisciplinary holistic team with referrals being customary practice.

“I come from a typical Afrikaner boere huis where these things were seldom, if ever, discussed. You have to take account of diverse cultures and languages. We have extreme gaps between cultures. You just have to adapt,” she added.

Burger and Boa were speaking shortly after a session on Breaking the Taboos Around Cancer and Sexuality, at the World Cancer Conference in Geneva earlier this month.

Sophia Sleeman, a Hodgkin’s lymphoma cancer survivor and youth ambassador for the European Cancer League, illustrated her own problems in a Geneva session entitled Cancer and Sexuality in Adolescents and Young Adults. 

Adolescents and young adults are people aged 18 to 39.

Sleeman said she was diagnosed a decade ago at the age of 18, having just begun her first meaningful relationship.

“I was ready to leave the nest and explore the world but instead I ended up in hospital with people my parents and grandparents’ age. I had only just started dating. You can imagine how lost and lonely I felt.”

She said she had a “serious chat” with her boyfriend, telling him he could still walk away, although she didn’t want him to, adding that in a couple of weeks, she would be bald and feeling unwell.

“I was really scared. I later found out my mum had had the same talk with him and told him he was either the whole way in or to get out. That’s not quite the relationship goal I had in mind, so you can imagine how much weight this put on us. How do you survive falling in love for the very first time, ready to explore your sexuality, and getting diagnosed with cancer at the same time? I mean my first-time having chemo was before my first time of having sex. I didn’t want my first-time having sex to be bald. It was a very confusing time.”

Sleeman said she remembers sitting on her bed at home, grabbing a handful of condoms from a “secret drawer” nearby and impulsively throwing them at her boyfriend.

“I said: ‘Okay, we’re doing this now, ’coz I still have my hair’.

“During this entire shit show, nobody in the hospital spoke to me about cancer and sex. One chemo nurse said, ‘just remember to wear a condom’ … I mean, I could have guessed, but there was no time or space to discuss this. I had so many other questions. As young adults we don’t have a defined solid sexual identity or history yet. We’ve just begun writing this part of our story.”

She said a global data search showed that 6.54% of all cancer patients were adolescents and young adults with a broad spectrum of tumour types, including a higher rate of inherited cancers and fewer related to lifestyle, but that 80% survived. 

“So, we’re a rare cohort with unique needs that differ from paediatric and older patients. It’s the start of adulthood with a disruption of education, a loss of independence, healthy connection to peers, in the starter job market, insurance and mortgage problems, a lowered self-esteem, less body confidence, changed appearance, disturbed sexual development, troubled relationships, and family planning issues,” she said.

In stark contrast to South Africa, in Sleeman’s home country of the Netherlands, two thirds of all hospitals have age specific sexologists, counselling patients and teaching colleagues. 

Two studies in the Netherlands, one quantitative and one qualitative, showed that 90% of adolescents and young adults and health care professionals considered communication about sexuality as the most critical issue to address, with only 21% of patients satisfied with the information given. Most healthcare professionals surveyed thought physicians and nurses were responsible for discussing sexuality while most patients preferred talking to nurses and sexologists.

The Dutch survey points to the most effective tool being a universally accessible, mediated website or a conversation with a healthcare professional (66.1% and 64.3% respectively).

Hans Neefs, a Belgian psychologist with the Flanders-based organisation Stand Up to Cancer, told the conference that one of the main barriers to discussions included an assumption by the health care professionals that intimacy and sexuality issues were temporary. 

“Patients feel embarrassed, they’re focusing on surviving the cancer during treatment, expect the HCP to introduce the topic and experience a lack of privacy and time pressure to discuss the topic during medical consults,” he added.

Boa said that with South Africa’s burden of cancer growing fast and having been aggravated by Covid lockdowns and infection fears, it was essential for health care professionals to rapidly upskill themselves in this field.

“It’s not just youth, but all age groups. With new techniques and wonderful new cancer treatments, a lot more people are living into old age,” she added.