Concerns regarding sexual health are quite common among patients who have undergone cancer treatment, but rarely are these concerns addressed by their medical care team. Most patients are shy or embarrassed to bring it up and even made to feel guilty about raising them, while they are trying to fight cancer. We spoke to Dr Prasad Raj Dandekar, consultant radio-oncologist who talked to us about the need for cancer patients to openly discuss their sexual health with their doctor to navigate issues in this aspect of their lives.
Cancer treatment and its side-effects has a major impact on the body, mind and overall well-being of patients. An important issue which has a huge impact on physical and emotional well- being of cancer survivors is that of their sexual health. This however remains one of the most neglected areas with physical, mental and emotional implications that can last long after treatment has ended. While doctors may not ensure a symptom-free life, there are ways to alleviate and reduce the severity of many symptoms for a better quality of life.
What does sexual health entail?
Sexual health is a very broad arena and covers a lot of different things. It is about understanding and taking care of your body, mind and feelings, knowing how to protect yourself from disease, and having respectful relationships. However, in India especially, there is a lot of coyness around sexual discussions and a lot of cultural sensitivity around it. Asking about sex is still considered taboo for many, and there is not much discussion about healthy sexual habits, and when to seek help, even for people leading normal lives. When you think about patients with chronic illnesses this discussion becomes even more difficult. It is a grey area and no one talks about these issues. For example, many diabetic patients have peripheral neuropathy and erectile dysfunction, but neither doctors nor patients discuss it, considering it a sensitive issue.
Secondly, doctors don’t bring up sexual health issues because they might not realize patients’ problems, or they are short of time, or they feel uncomfortable talking about it. Patients also don’t bring up this as they do not relate their sexual issues to their illness, or they feel embarrassed.
There is a chasm between men and women in their approach to sexual health. Men still consult with doctors, but women hesitate. It is an uphill task for women to express what they are going through. Many clinics do not provide any privacy for such discussions as well. So sexual health gets totally overlooked.
A lot is dependent on the doctor’s cultural preference and ability to understand what a patient is going through. Oncologists are not trained in dealing with sexual health issues in their patients as well. We learn on the job by reading, observing our patients and asking questions. Medical training needs to include sexual health as it is a part of normal life
How does cancer treatment directly or indirectly affect sexuality and intimacy? Are there differences depending on the mode of treatment – hormonal, radiation, chemotherapy, and surgery?
Broadly there are two types of cancer- those of the sexual organs and other cancers. Cancer treatment can affect sexuality and intimacy differently depending on the type of cancer and its treatment. Surgery, radiotherapy, chemotherapy and hormonal therapy have direct and long-term effects on sexual health.
Cancers like the prostate, penile, or testicular cancer in men and the breast, cervical, vaginal or uterine cancer in women, directly impact their sexual function and sexual health. Surgery, radiotherapy, chemotherapy and hormonal therapy can have direct and long-term effects on sexual health.
Chemotherapy
It can lead to hair loss, fatigue, nausea, hormonal changes or skin changes affecting a person’s body image and sexual desire. Patients may be physically too unwell for any sexual activity. Recovery from chemotherapy may take variable amount of time and depends on the drugs, cancer being treated as well as on patients.
Hormonal therapy
It is used for breast, prostate and other cancers. It can cause various sexual issues such as weight gain or decreased arousal. It may lead to early menopause, vaginal dryness and decreased libido in women. In men it can decrease libido, penis shrinkage or cause erectile problems.
Therapy in advanced prostate cancer may require the removal of both testes or receiving hormone injections, both resulting in low testosterone, and hence lack of sexual desire. This may have significant impact on their psychological health and cause problems in their relationship.
It is wrong for us to assume that older people are not sexually active. A lot of seniors even in their late 80s are sexually active. It is very important to inform them that they will lose their desire once this treatment starts and prepare them for this outcome.
We had a case of a gentleman in his mid-50s who was advised hormone and radiation therapy. He refused hormone therapy as he was keen not to lose his libido and sexual performance. We tried to explain to him that the impact of hormone therapy on his sexual activity was temporary. He had 7 consults with us in 2 months but he was not convinced by us and did not come back for treatment.
Though this was an extreme case of fear on what would happen to his sexual functioning it made me acutely aware that many people are not vocal as this person was about his sexual needs. We need to be cognizant about these things and try to have frank discussions with patients to prepare them for such life changing eventualities with their treatment and how to deal with them.
Hormonal treatment for women with breast cancer can result in vaginal itching and dryness. This dryness is like post-menopausal dryness. However, they cannot be given oestrogen treatment to deal with these problems and that is distressing from them. The doctors can still advise patients water based lubricants, which may significantly improve their sexual health.
Radiation
Female patients who have received radiation in the pelvic area may face dryness in that area. That makes vaginal intercourse very difficult and they will need to use a water-based gel to ensure that the friction is lessened. Sometimes if they have a lot of pain, we advise them to use anaesthetic gels. It is important that the partner uses a condom to prevent numbness.
After radiation the vaginal width may reduce and the vagina may start shrinking. That may cause a problem during intercourse. We advise dilators but not everyone is willing or able to use it. If they don’t use the dilators the vaginal diameter will go on shrinking and vaginal intercourse may lead to bleeding or become painful for the woman and may be an unpleasant experience for her and her partner as well.
Surgery
Surgery may cause residual pain that reduces desire or changes in body image, affecting sexual confidence. Patients with breast conservation surgery may experience residual pain while indulging in any sexual acts that involves the breast area. This may reduce their sexual desire. There may also be numbness in the reconstructed breast. Mastectomy patients sometimes may feel they are not attractive anymore and their partners may feel the same way as well. This is a difficult issue and needs an open discussion between the partners and their doctor.
Breast reconstruction surgery leaves scars on the breast and back. This may make women patients acutely aware of their physical self and it may make them feel unattractive about themselves.
Men may have body image issues after testicular surgery or head and neck cancer surgery. Treatment for testicular cancer involves removal of affected testes. This has a psychological impact on the patient. Prostate cancer surgery may lead to urinary incontinence or impotence. Retrograde ejaculation is the most common complication, wherein sperm enters the bladder and comes out through the urine instead of being ejaculated through the penis.
How can doctors help patients to lead fulfilling lives in the face of such difficulties?
Most of us follow a narrow definition of sex restricting it to only conventional forms of sex. In actual fact, the sexual act is a wide spectrum. The most important part of having sex is the human connection we form and the intimacy you feel with your partner.
Patients need to be shown that there are many ways to foster intimacy and build a close bond. Intimacy can be felt in various ways that work for each couple such as cuddling, massaging, enjoying being close, talking, holding hands etc. I advise patients not to be afraid to discuss their likes and dislikes with their partner. Discussing sexual matters may be challenging, but openly sharing emotions and desires can provide a sense of comfort and reassurance to both the partners.
Cancer treatments can affect intimacy by causing physical and emotional challenges such as depression, anxiety, fatigue and pain. Intimacy is crucial in relationship as it is the deep bond we share with our partner. For cancer patients who often feel guilt, stress and fear, finding intimacy with their partner can be a significant source of comfort and connection.
What are the other social and psychological aspects?
There are many layers to a cancer diagnosis from the point of view of a patient and their family. A cancer diagnosis causes a lot of stress in the family. This stress reduces sexual desire. The absence of sexual intimacy can lead to frustration and irritation. Couples need to have a conversation with each other so that regular intimacy is maintained if not sexual relations. This will help them to approach the diagnosis and treatment with a better frame of mind.
Caregivers face a lot of burden especially with serious patients. They feel pain for their loved ones, fear and anger at the situation as well. Many times, they feel they have to sacrifice a lot to deal with the illness. Cancer also leads to financial pressures with medical bills and loss of income and social pressures.
What is the role of any form of rehabilitation therapy?
Most important in rehabilitation post cancer treatment is mental health support. We need specialists and experts talking about sex. Oncologists are focused on treating the cancer. A patient cannot talk about survival and his or her sexual desires in the same conversation. It is not easy for a patient to open up to their oncologist on sexual issues. Also, the treating doctors may not have training or interest or time to take up this conversation.
It falls upon mental health professionals to step up and talk about sex. I don’t know if we can have specialists who focus only on sexual health for cancer patients as it is a very niche area, but if we can bring in people who focus on sexual health after therapy it will be a wonderful step in the right direction.
What are the different forms of rehabilitation with different cancers?
Rehabilitation discussions have to be specific. For e.g. when talking to a mastectomy patient all the options before her need to be discussed such as breast reconstruction if that is available or an external prosthesis. Her partner’s outlook and feelings on mastectomy, reconstruction or conservation surgery need to be also discussed to arrive at a satisfactory solution.
Pelvic radiation therapy for bladder cancer or prostate cancer can cause erectile issues in men due to nerve or blood vessels damage.
A man who is on prostate hormone therapy may not be unable to have erectile disfunction, this does not mean he cannot enjoy intimacy in other forms. A mental health expert can help the patient to define limitations and then explore the possibilities to enjoy intimacy keeping these limitations in mind.
Head and neck cancers may require a removal of tongue, or cheek in addition to radiation. The entire anatomy changes which cause complications. Radiation therapy for head and neck cancer, can cause dry mouth, sticky saliva or foul smell, which can make kissing or speaking challenging and impacting intimacy.
All these major changes happen very rapidly for patients and they have no time to adjust to these changes emotionally though they are aware of them cognitively. That leads to frustration about their limitations. They have to see what is possible for them in the present and enjoy it. But that is hard to do without help from an expert.
Enjoying intimacy and sex with limitations brought on by treatment is a matter of defining boundaries, identifying the dos and don’ts and then exploring possibilities within these boundaries
Do you see psycho-oncologists getting into this aspect of sexual health?
Mental health support for cancer patients in India is minuscule. Within that area, I have not heard about anyone talking about this area specifically. We run onco- rehabilitation program in our hospital since many years now. The team provides holistic care and guidance to patients in nutrition, physiotherapy, yoga, counselling and speech and swallow therapy.
When the treatment is on, the focus is on and getting the treatment done and tiding over the side effects. Sexual health is not in the foreground during treatment. After treatment is over is when the conversation is needed on sexual health.
Do you recommend physiotherapy to your patients? How is physiotherapy useful? What role does rehabilitative therapy play in managing sexual health for cancer patients?
Physiotherapy plays a very important role in rehabilitation of the patients after surgery, chemotherapy, and radiotherapy. It is useful for reducing pain, improving mobility, and enhancing overall physical function. It plays an important role in rehabilitation by helping patients regain strength in doing daily activities. Pelvic exercises for ovarian and uterine cancer, arm exercises for the breast cancer and mouth opening exercises for oral cancer are essential for a good quality of life outcomes.
Rehabilitation should be designed based on the patient’s specific condition. For example, for a patient undergoing mastectomy, the decision may be based on the patient and his partner’s preference for breast reconstruction or external prosthesis. For men undergoing pelvic surgery or radiation for prostate cancer, understanding their desired outcomes, giving them choices and exploring alternative forms of intimacy within their limitations is very important.
Doctors are often focused on treatment, and may not have the time or training to address the sexual desires of the patients effectively. Mental health providers and counsellors can play a very important role in filling this gap by discussing sexual needs and providing necessary support. Integrating and training specialists into cancer teams to address patients’ needs can significantly benefit them after therapy.
Any tips on management of sexual health and intimacy for spouses/partners of cancer patients given the impact of body image on feelings of sexuality and desirability?
Support from family members, especially partner, can make a big difference during this journey. Some valuable tips on managing sexual health and intimacy for cancer patients:
- Engage in an open conversation with your partner about the impact of cancer and treatment on your sexual desires and needs. Identify the changes that you can make to your life to account for them.
- Do not try any new medications or treatments without your oncologist’s consultation as they can interact with cancer treatment or medications.
- Water based gels like KY gel or lubic gel are recommended for vaginal dryness.
- Estrogen or ginseng is contraindicated in case of breast cancer.
- Local anaesthetic gel can be used in case of pain due to vaginal dryness or narrowing can be used under the guidance of your doctor. However, the partner should wear a condom to avoid numbing.
- Viagra will not be effective for prostate cancer patients on anti-testosterone therapy but increase the risk of cardiac complications. You can discuss other options with the doctor.
- Hormone therapy for two years might impact the patient’s ability to have erections. Exploring alternative forms of intimacy with partners can bring fulfilment in life.
- Experiment with different forms of intimacy to feel emotionally connected to your partner, such as cuddling.
- Take care of your emotional and physical wellbeing by spending quality time together.
What advice do you give for patients who are single and unmarried?
For single and unmarried cancer patients, finding a partner can be a complex journey. Honesty and openness are essential. Many of the young patients have highly curable cancers such as stage 1 seminoma cancer. It is important to discuss openly and communicate everything about the diagnosis and treatment of the cancer with your future partner. Sharing medical information and going for a consultation with your partner will build trust and understanding between both of you. Hiding the truth from your partner is unfair and unethical for your relationship. When dealing with the cancer, being open and honest with each other is really important for making a strong and supportive relationship.
Do not hide the illness from your partner. It is problematic later on. When a patient gets married without informing their spouse about the cancer they can’t come for follow-up and treatment on time. Very often in our practice we see that families are responsible for not disclosing the information before marriage. I would ask them not do to this as it is unfair to the patient and the partner. Conversation is the key to a healthy and successful relationship.
Any final thoughts you would like to share with our readers?
Cancer can be treated, in some cases prevented. Its impact on our life can also be modified by accepting the reality and open conversation with family and oncologists. I urge patients and their families to be more open and discuss about the problems that they are facing. In India, unfortunately we often see a complete lack of conversation on delicate subjects such as sexual health. A clear and honest conversation will be an important first step towards improving outcomes and dealing with challenges better.
Dr. Prasad Raj Dandekar is an oncologist and heads the department of Radiation Oncology at the Sir H N Reliance Foundation Hospital, Mumbai. He is trained at premier oncology institutes, Tata Memorial Hospital, Mumbai, and The Royal Marsden NHS Trust, London, UK. He is an advocate of precision oncology, and holistic care, and is involved in training of oncologists across India in latest updates in Radiation Oncology. He is an executive committee member of the Foundation for Head and Neck Oncology (FHNO), India, one of the largest body of Oncologists in India which is actively involved in the education and advocacy for head and neck cancers. He is the founder of Health Professionals for Queer Indians (HPQI) which is focussed on sensitising healthcare professionals for the healthcare needs of LGBTQ community by organising trainings, conferences and online educational material for healthcare professionals. He is a co-founder of Seenagers GupShup Group, which is a support group for gay men who are above the age of 50 years.
References
- https://www.mayoclinic.org/tests-procedures/chemotherapy/expert-answers…
- https://www.cancer.net/blog/2023-01/addressing-common-sexual-health-con…
- https://www.cancerresearchuk.org/about-cancer/coping/physically/sex/eff…
- https://www.cancer.gov/about-cancer/treatment/side-effects/sexuality-wo…
- https://www.cancer.gov/about-cancer/treatment/side-effects/sexuality-men
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10417474/
