Pakistan, classified as a lower-middle-income nation, is experiencing a massive increase in the number of cancer cases. Our health expenditure as a proportion of the gross domestic product (GDP) is worryingly small in contrast to that of more developed nations.
We are fighting with illiteracy, poverty, limited resources, lack of awareness regarding screening and early presentation of tumors, and an inadequate number of trained oncologists. There are very few centers with state-of-the-art chemotherapy and radiation facilities catering to the needs of a huge population with cancer.
Female patients from rural areas present with breast cancer at a very late stage due to a lack of awareness, cultural and social barriers, and stigmatization regarding this disease that makes them hesitant to consult with oncologists. In the early stages of their symptoms, they usually seek help from unqualified practitioners and local quacks, sometimes for months. As a result, when they report to a tertiary care hospital at a later stage, their cancer is usually advanced or metastatic. The treatment then becomes more challenging, resulting in more financial toxicity. In our country, there are very few female oncologists, and the majority of female patients prefer not to be examined by male physicians. This is another reason that makes them more reluctant to visit hospitals. Low literacy rates and language barriers contribute to a poor understanding of their disease nature and treatment plan, leading to poor adherence to treatment and, ultimately, poor outcomes.
When receiving radiation therapy, many female patients with breast cancer primarily want female radiation therapists to be present for them on the machine. Scarcely any radiation therapists are female, which affects not only patient comfort but also the reproducibility of the patient’s position during the radiation treatment. In the worst situation, this results in treatment refusal and treatment delays.
Apart from all of this, there is another aspect that is being completely overlooked and is very difficult to discuss: sexual health during and after cancer treatment. Cancer affects the quality of life and the physical and emotional well-being of an individual. Besides that, it certainly takes a toll on mental health and sexual health as well.
While biological factors, such as the urge for reproduction, play a significant role in sexuality, other factors, such as individual needs and desires, emotions, behaviors, and identities, are equally essential. The World Health Organisation defines sexuality as “a central aspect of being human throughout life (that) encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy, and reproduction.”
A vital component of general health and well-being, sexual health is frequently disregarded during patient visits, educational settings, and our medical training. Although a majority of cancer patients in Pakistan are least concerned about the sexual implications of their treatment, many people believe that their sexual well-being is essential to their sense of self and personal integrity, which makes it possible for them to manage their illness.
It’s the basic right of a patient to have complete information about the possible impacts of cancer treatment on having children, unplanned pregnancies, contraception, and infertility. Explaining to them the effects of treatment on their sexual health is as important as guiding them about the best treatment options. Young patients of childbearing age especially need to have complete information on this very important and sensitive topic.
Once, a young girl treated for rectal cancer, on her follow-up visit, asked me why she had not gotten her period since the time of completion of her radiation therapy. The fact that she completed her treatment and was unaware of any side effects left me speechless.
Body image dissatisfaction due to the loss of a breast after a mastectomy is a common problem.
It’s not okay when you say to a patient who has lost her breast:
“Appreciate the fact that at least you are alive.”
I find it quite an insensitive statement to disregard one’s concerns about body image issues. It’s a complete invalidation of the difficult experience and mental trauma a patient goes through. Many female patients express that they wonder if their partners will still find them desirable. We don’t have enough time to give them the confidence or inspiration to discuss these matters.
When our female patients with gynecologic cancers receive brachytherapy from male physicians, they experience intense anxiety as well as feelings of shame and guilt. Female patients find it difficult to discuss and follow post-procedural advice, such as vaginal dilatation, as they feel hesitant to talk about this with male doctors. Later on, their personal and sexual life may be further impacted by difficulties, particularly vaginal stenosis, which is more likely to happen due to this lack of communication.
Feeling ugly after the loss of hair and nails due to chemotherapy, skin changes and scars after radiation therapy, and differences in body weight are real issues that need to be addressed. The only thing our overworked oncologists can say is, “You have to cope with it.”
Even if it is required to stop a female patient’s cancer from relapsing, we should not be the ones to decide on her ovarian ablation without first talking about infertility. She still has the right to desire more children in the future, even if she already has two or three.
It is a typical observation that older individuals with prostate cancer are not informed about the risk of developing erectile dysfunction. Physicians just assume that their sexual life must be over by this age.
Out of shyness, on several occasions, many patients, both male and female, have brought me to another room merely to inquire, “Can we do it?” It pains me to see that they have completely given up on having an intimate relationship out of concern that it might hurt their treatment or prognosis. Sometimes I find it necessary if I can persuade them to let go of their worries and just make an effort to lead regular lives. Because of societal and cultural hurdles, many are quite hesitant to bring up these topics with their family.
Patients suffering from lymphomas, leukemias, germ cell tumors, gynecological, and genitourinary tumors need to be counseled properly before chemotherapy and radiation therapy. Before initiating any kind of treatment, it is important to talk about the management options for tumors that may cause a hormonal imbalance, growth retardation, irreversible hair loss, and infertility later on. It should be our responsibility to advise them that cryopreservation and sperm banking are always options. Just because they might not afford to avail themselves of these options, even then, someone’s right to be informed about the most minute facts of their treatment cannot be taken away from them.
Taking care of a cancer patient means paying attention to all aspects of his or her well-being, including issues of sexuality. However, consideration of these needs frequently remains unmet and results in heightened emotional distress. More and more educated patients are reporting their concerns about sexuality are not always addressed during their visits with physicians.
Our physicians feel uncomfortable and embarrassed when having such conversations with patients. It is a real concern that very few healthcare professionals can answer such queries satisfactorily and politely.
Another issue we are dealing with is that physicians feel unprepared to have such a discourse because they are overworked. To set clear expectations, it would be helpful to train future doctors to address these issues and patient care in this regard.
Can we set aside the cultural taboos and constraints on discussing this subject for a short period during a 20-minute consultation? All we have to do is listen to the patient with an open mind and a non-judgmental approach, respecting their right to privacy and confidentiality, keeping aside the thoughts of social barriers, and seeing the patient just as another human being with needs similar to our own. We must acknowledge that sexual health is an essential component of our patients’ lives. And I am sure most of us don’t want to see our patients suffering in silence and isolation.
Damane Zehra is a radiation oncology resident in Pakistan.
