INTRODUCTION:

The two most common cancers among Indian women are breast and cervical cancers, contributing to about 39.4% of total cancer in India for the year 2020^{21,25,12,11,6,24}.However, Breast cancer is on the rise, both among rural and urban women. With increasing urbanisation and westernisation lifestyles and food habits of Indian women, it is the most common type of cancer among women in urban areas and the second most common among rural women^14,8.

It is a fact that the incidence of breast cancer is increasing; however, the overall survival of breast cancer patients is usually longer compared to other cancers².

In a study done by Lavanya (2013), it has been appropriately cited that due to the fast-growing medical field, the life expectancy of people with cancer has become longer, causing them to deal with the long-term consequences of the disease and its treatment. Thus an increasing number of individuals need supportive care to enhance their quality of life (Lucia 2003), which increases the identification of the symptoms associated with cancer and relief of these symptoms emerging as an essential dimension of cancer care^20,15. The diagnosis of breast cancer and its treatment with surgery, systemic therapy (anticancer chemotherapy, hormonal therapy, targeted therapy, and immunotherapy), and radiation therapy, are associated with significant adverse influences on physical and mental health, quality of life, and the economic status of the patient and her family. Women’s responses to and coping with the diagnosis and treatment has also become an area of growing concern¹¹. In the context of the Indian setting, where women’s health always takes a backseat, it becomes much more significant.

This review was conducted as there is a paucity of literature on this subject. There is enough evidence and literature on the epidemiology, diagnosis, treatment modalities, perception, beliefs, misconceptions and awareness about warning signs of cancer in India. But very few articles and studies have addressed survivorship issues^26,3,10.

This review article is a modest effort to search for the available literature and present it together in a comprehensive manner so that it can be used as a guide in planning survivorship programs in India which are still in their infancy stage. A sincere effort has been made to highlight the differences in the health concerns and issues among rural and urban women. They have an entirely different set of cultures and availability of resources and access to health care.

MATERIALS AND METHODS:

A focused and extensive search and evaluation of numerous peer-reviewed articles was conducted. Journal articles were retrieved from databases like MEDLINE, Google Scholar, and Google using keywords in combination with the Boolean operator. The keywords used were ‘cancer’, ‘survivors’, ‘health concerns’, ‘health issues’. All the findings were thematically organised and looked through a conceptual analysis of the basic ideas like breast, survivorship, sexuality, etc.

Inclusion/exclusion criteria, quality appraisal, and synthesis:

Articles were included only if they were peer-reviewed, published in English up to 2021, and found relevant to the review objectives. All the papers were reviewed and analysed to synthesise and summarise the current body of knowledge, identifying the gaps in knowledge.

Incidence of Breast cancer in India:

As per the ICMR-PBCR data, breast cancer is the commonest cancer among women in urban registries of Delhi, Mumbai, Ahmedabad, Calcutta, and Trivandrum, where it constitutes > 30% of all cancers in females. In the rural PBCR of Barshi, breast cancer is the second commonest cancer in women after cancer of the uterine cervix^8,23.The rise in the incidence of 0.5–2% per annum has been seen across all regions of India and in all age groups, but more so in the younger age groups (< 45 years)¹³. A significant proportion of Indian breast cancer patients are younger than 35 years of age. This proportion varies between 11 to 26%²².

Thus, the above indices clearly show that breast cancer is rising among Indian women, the majority being young. However, they differ remarkably in the age at which they are affected from their western counterparts, where the majority are post-menopausal. More than 50 % of Indian women diagnosed are premenopausal. The incidence of breast cancer in urban women is way ahead of rural women.

Stage of the breast cancer among Indian women:

Almost 50% of patients present with locally advanced disease. The majority of patients present with stage III-b (35) and III-a (27%), few patients in stage II-b (16%), and some 8–10% of patients at TNM stage IV. However, only very few (approximately 5%) have stage I disease. The stage of the cancer presentation in 4 major cancer centres in India, Mumbai, Trivandrum, Chennai, and Lucknow, also shows that majority of the patients (23–53.7%) of the women presented in II to III stages; however, 1-7% only reported to the hospital in I stage and remaining 9-12.8% reported in the highly advanced IV stage¹.This shows that the maximum number of Indian women reported to the hospital with breast cancer in the advanced stages.

Breast Cancer Survivor – A Perspective:

The concept of survivorship was introduced in the western world in the sixties and seventies of the twentieth century. It came to light when the improvement and longevity of life started with the development of effective cancer treatment therapies²³.

According to Macmillan Cancer Support, UK – “a cancer survivor is someone who is living with or beyond cancer, namely someone who has completed initial cancer management and has no apparent evidence of active disease; or who is living with progressive disease and may be receiving cancer treatment but is not in the terminal phases of illness; or has had cancer in the past”¹³.

Once the treatment is completed, the cancer patients still suffer many physical, emotional, and psychological issues. This concept of survivorship also extends to the caregivers and family members as they are also affected by the diagnosis and the treatment. It is a common tendency to focus merely on the treatment of the disease by the health team, just another clinical Case, or just another patient in a country like India where the health care workers are overloaded with the work. Thus, discussing these issues with improved 5 and 10-year survival rates becomes pertinent. There takes a long time for the patient to suffer from the effects of cancer or its treatment. There is an immediate need for all level health workers in India to realise that these women will need support and guidance during survivorship.

Survivorship Issues:

In a study carried out by Navneet Kaur et al. (2018) on Survivorship issues as determinants of quality of life after breast cancer treatment among 230 breast cancer survivors and 112 controls at an academic centre. The most prevalent issues reported were fatigue (60%), restriction of shoulder movement (59.6%), body and joint pain (63.5%), chemotherapy-induced cessation of menstruation (73.3%), and loss of sexual desire (60%). Issues that had maximum impact on QOL scores were emotional distress (r = −11.375), fatigue (r = −9.27), premature menopause (r = −2.085), and its related symptoms⁵.

In another study carried out by ‘Breast cancer survivorship In India’ in which 205 breast cancer survivors participated. A total of 190 survivors registered from 5 cities. The major health issues faced were Arthralgia (64%) and anxiety (60.9%). Surgical site pain (56.1%), depression (53.9%), cognitive deficits (52.2%), skin/ hair/ nail problems (48.2%), hot flashes (48.2%), arm swelling (48.2%) and vaginal dryness (38.2%) were the other issues among the survivors.

It is thus evident from the literature review that the survivorship issues mainly concern the effective management of the side effects of cancer treatment. The issues are related to the immediate or long term side effects or complications of the cancer treatment. The availability of home care and palliative care support groups can significantly help in this regard. Many patients are unable to reach a hospital or a primary health centre to scarcity of resources, especially in Rural India.

Psychosocial issues:

In a qualitative study on ‘body image and sexuality concerns among Indian breast cancer survivors’ by Barthakur et al. (2017), among 15 breast cancer survivors about changes in body image, themes of changes in womanhood, motherhood, and attractiveness emerged. There have been changes in their appearance, which was distressing for many survivors. It was to that level for some that they stopped looking at themselves in the mirror post-surgery. However, some also believed that the Indian culture of hiding the upper part of the body post-surgery with a dupatta or scarf helped them. They could perfectly hide the area and did not feel much. For some survivors, hair loss was a significant concern. Adjustments in the dressing style and type of clothes had to be made as saree and blouses commonly worn by rural women. Others felt that nothing looked good on them. However, some expressed that they have more time to do their dressing than before in order to look good. Many uncomfortable situations as noticing the empty area during checks or slipping of the prosthesis in public or during swimming. Many survivors expressed that they felt embarrassed on many occasions.

All survivors were not comfortable discussing their sexual life and sexuality openly. However, they expressed that there is no interest left, the spouse feels scared even to touch them, and decreased sexual desire was mentioned by the majority of them, especially older survivors.⁵Although Kumar refers to the ‘freedom of women in question’ (2012) concerning their pregnancy and also the ‘relevance of sex education’ (2020) in society; one may conclude that how important it is to understand the existence of women as independent gender and how important it is to talk about sex and related issues in public. Such topics always remain hidden and never become part of public discourse in general in a society like India^17,18. Kumar (2021) suggests that “we need to provide awareness among the masses in the developing or underdeveloped part of the world”¹⁹. However, ‘breast’ as a concept is entirely different in natural expression but carries a sexual connotation in the contexts mentioned above. That is why both are taken together to reflect on the image of the body.

In another study by Singh and Rana (2015) on ‘Body Image and Sexual Problems in Young Breast Cancer Patients in South Indian Population’ on 72 breast cancer survivors, it was found that a substantial proportion of women experienced the body image and sexual problems after diagnosis or treatment. The Hopwood Body Image Scale was used for the assessment of the body image perception, which showed less physical attraction in most of the patients with self-consciousness, seeing themselves naked in the mirror and dissatisfied with scars on their bodies. On assessing sexual distress by using the Female Sexual Distress Scale (FSDS), the mean score was 24.4 (47%), which shows higher sexual distress^5,28. Thus there is a significant impact on body image and changes in sexuality, and there is higher sexual distress.

Needs of Breast Cancer Survivors:

In a qualitative study by Barthakur (2016) on the experiences of breast cancer survivors in urban India. Data were collected from 15 women in South and East India using an in-depth interview method following a descriptive phenomenology method. The need for informational and emotional needs of the survivors emerged as the main theme. In terms of needs related to illness and treatment, all women expressed to have a general understanding of the illness; however, for decisions regarding treatment, they left it to the doctor. Arrangement of finances regarding treatment and a need for more information on side effects of the treatment so that they can prepare themselves accordingly. A common issue was a lack of information on diet and prosthesis. Almost Nil Information was given in this regard.

The issue of collusion where patients are not informed about their diagnosis is also revealed. Counselling prior to and during the treatment was associated with positive coping. In emotional needs and experiences, the quality interactions with the health team were assessed. The treating team holds a ‘casual’ attitude towards the illness as an “ordinary cold and cough” for the doctors as every now and then they see a case. It was also expressed that a ‘dismissive’ or ‘matter of fact’ attitude is held towards managing side effects. The patient is only considered as a “Clinical status’’. The reason given for this was the number of patients waiting for their turn for treatment. However, few also reported that their treating physicians were good. The issues pertaining to the cultural norm were also raised. Women in Indian settings are not used to being touched by others, especially in the areas where the disease has set in. It left them with the feeling as if this body was not theirs, along with guilt. They had strange feelings during examinations and treatment by men surgeons. One survivor also pointed out the differences in levels of faith in doctors by patients from rural versus urban contexts and its possible effect: the rural people have immense faith in the doctors and consider them as God. They never question whatever the doctor does. There is no explanation needed for whatever way he handles the patient; however, if the doctor approaches with the same attitude the urban women, they suffer a lot⁴.

In another qualitative study by Dsouza (2018), where 17 breast cancer survivors who have completed 6 months of cancer treatment were included, the needs of survivors were identified as financial, informational, breast reconstruction surgery, help in household activities, family support, counselling, and emotional support. The major themes which emerged were – awareness – lack of awareness –leading to delays in seeking screening and treatment. Local newspaper articles were the main source of information. In the category of psychological expressions – in post-diagnosis reactions – anxiety and future apprehensions, additional burden on family resulted in some mental disturbance leading to attempt to commit suicide. Fear of disease was expected, which also led to the refusal of treatment. Anxiety related to the incurable nature of the disease, sadness was commonly noticed. In the theme of spirituality and misconceptions, God was considered a saviour from worsening the situation. He was offered offerings as animal sacrifice, prized possessions to have mercy on them. The economic burden came out to be an essential theme. As now the woman couldn’t go to work, losing that salary and the additional responsibility of expensive treatment was a matter of concern for them. During the treatment, the women were confined to homes. Concerns for changes in appearance were felt to avoid awkward looks from people. Wearing a wig and stuffing cotton (post-mastectomy) was being considered by many. Maintaining secrecy of the diagnosis emerged as another main theme. The reasons for keeping it secret were many as they did not want their dear ones to feel bad knowing that they are suffering from an incurable illness, secondly as cancer is genetic, their daughters no one would marry, knowing their diagnosis people will offer sympathies which will make them feel bad. The majority of the participants expressed that they got family to support them, but few expressed that they did not get any support. The needs of the survivors included financial support, emotional support, information need, counselling, need for family support, help in household activity, and breast reconstruction surgery⁷.

Thus, breast cancer survivors experience many concerns through diagnosis and treatment, including side effects of treatment. However, softer issues such as addressing emotional concerns, counselling, communication, and an empathetic approach from the health workers are very significant. Information needs on the Side effects of treatment and prosthesis have to be taken seriously. Breast Reconstruction surgery options must be discussed with the patient post-surgery. There should be no personal prejudice in physicians’ treatment as Indian women do not require prostheses or reconstructive surgeries. The survivorship period should be considered as a part of a disease with specific needs requiring focussed attention from the treating team. There should be a humanistic approach considering the cultural boundaries of conservative society women by the treating team is the need of the hour.

Quality of life among the survivors has always been a determining factor among survivors. In a study done by Gangane et al. (2017) on Quality of Life Determinants in Breast Cancer Patients in Central Rural India, 208 females with infiltrating Carcinoma of breast, it was revealed that the overall mean score for QOL was 59.3, which is a moderate level of quality of life. The QOL was negatively associated with lower education and being divorced/widowed/unmarried. Positive QOL is associated with higher income, psychology, social relationships and environmental factors, and self-efficacy⁹. Thus the quality of life of Rural Indian women has been moderate.

The moderate QOL of rural/urban women can be markedly improved by the counselling provided in the knowledge areas of women where there is a gap. The availability of support groups in the community where they live can be a considerable help.

CONCLUSION:

Breast cancer is the most commonly occurring cancer among Indian women. It affects both Urban and Rural women. However, women in urban are more informed and have better access to health care facilities. In terms of faith, rural women have complete faith in treating physicians, and they never question what they decide. However, there is a general delay in seeking both diagnosis and treatment and neglect of care. The survivorship issues include informational needs on side effects of treatment, prosthesis, breast reconstruction surgeries, guidance in managing pain, lymphedema, swelling over the incision site, and joint pain. Psychosocial issues such as sexuality and body image need to be addressed, treating them with sensitivity in view of cultural differences and social norms. There are countable studies on this topic. More mixed methodology studies are to be carried out to explore the specific issues among rural and urban women.

CONFLICT OF INTEREST:

The authors have no conflicts of interest regarding this study.

REFERENCES:

1. Agarwal, G., Pradeep, P. V., Aggarwal, V., Yip, C-H., and Cheung, P. S. Y. (2007). Spectrum of breast cancer in Asian women. World Journal of Surgery, 31(5), 1031-1040.

2. Allemani, C., Weir, H. K., Carreira, H., Harewood, R., Spika, D., Wang, X-S., Bannon, F., Ahn J. V., Johnson, C. J., Bonaventure, A., Marcos-Gragera, R., Stiller, C., Azevedo e Silva, G., Chen, W-Q., Ogunbiyi, O. J., Rachet, B., Soeberg, M. J., You, H., Matsuda, T., Bielska-Lasota, M., Storm, H., Tucker, T. C., Coleman, M. P., and the CONCORD Working Group. (2015). Global surveillance of cancer survival 1995-2009: analysis of individual data for 25676887 patients from 279 population-based registries in 67 countries (CONCORD-2). Lancet, 385, 977-1010.

3. Babu, R. M., and Thomas, P. (2015). Assessment of Public Awareness of Cancer Warning Signs among Rural Population, Kochi, Kerala. International Journal of Advances in Nursing Management, 3(3), 253-258.

4. Barthakur, M. S., Sharma, M. P., Chaturvedi, S. K., and Manjunath, S. K. (2016). Experiences of Breast Cancer Survivors with Oncology Settings in Urban India: Qualitative Findings. Indian Journal of Surgical Oncology, 7(4), 392-396.

5. Barthakur, M. S., Sharma, M. P., Chaturvedi, S. K., and Manjunath, S. K. (2017). Body Image and Sexuality in Women Survivors of Breast Cancer in India: Qualitative Findings. Indian Journal of Palliative Care, 23(1), 13-17.

6. D Souza, A., Babu D, and Gireesh GR. (2014). Assess Level of Risk of Cervical Cancer among Women in selected Community Area, Mangalore. Asian Journal of Nursing Education and Research, 4(4), 461-468.

7. Dsouza, S. M., Vyas, N., Narayanan, P., Parsekar, S. S., Gore, M., and Sharan, K. (2018). A qualitative study on experiences and needs of breast cancer survivors in Karnataka, India. Clinical Epidemiology and Global Health, 6(2), 69-74.

8. For Statistics on Breast Cancer in India, visit [breastcancerindia.net].

9. Gangane, N., Khairkar, P., Hurtig, A-K., and Sebastián, M. S. (2017). Quality of Life Determinants in Breast Cancer Patients in Central Rural India. Asian Pacific Journal of Cancer Prevention, 18(12), 3325-3332.

10. Geetha, M., Menaka, K., and Padmavathi, P. (2017). Awareness of Breast self-examination and risk factors of Breast Cancer among Women. Asian Journal of Nursing Education and Research, 7(3), 413-416.

11. Geetha, M., Padmavathi, P., and Menaka, K. (2017). Effectiveness of Multi Interventional Package on Quality of Life among Breast Cancer Patients Receiving Chemotherapy Drugs – Pilot Study. International Journal of Advances in Nursing Management, 5(2), 164-168.

12. George T, J., and Batra, K. (2015). Major Determinants and Various Preventive Strategies of Cervical Cancer. Asian Journal of Nursing Education and Research, 5(3), 420-424.

13. ICMR-NCDIR-NCRP. (2001). Consolidated Report of the Population Based Cancer Registries 1990–1996. Indian Council of Medical Research, New Delhi.

14. ICMR-NCDIR-NCRP. (2016). Three Year Report of Population Based Cancer Registries 2012–2014. Indian Council of Medical Research, Bangalore.

15. Kaur, J. (2015). An Exploratory Study to Assess the Quality of Life among Cancer Patients of District Bathinda, Punjab. Asian Journal of Nursing Education and Research, 5(1), 18-22.

16. Kaur, N., Gupta, A., Sharma, A. K., and Jain, A. (2018). Survivorship issues as determinants of quality of life after breast cancer treatment: Report from a limited resource setting. Breast, 41, 120-126.

17. Kumar, A. (2012). Pregnancy and Patriarchy: Freedom of Women in Question. International Journal of Research in Social Sciences, 2(4), 752-760.

18. Kumar, A. (2020). The Singular Standpoint of Sex Education: An Overview. International Journal of Arts, Humanities and Social Studies, 2(6), 24-30.

19. Kumar, A. (2021). Finding Concepts with Sexuality and Making Sense of Social Institutions in Foucauldian Perspective. Research Journal of Humanities and Social Sciences, 12(1), 21-26.

20. Lavanya, Santha, N. J., and Sethu, G. (2014). A Study to Assess the Effectiveness of Exercise on Cancer-Related Fatigue among Women with Breast Cancer Admitted in Erode Cancer Centre, Erode. International Journal of Advances in Nursing Management, 2(3), 134-138.

21. Mathur, P., Sathishkumar, K., Chaturvedi, M., Das, P., Sudarshan, K. L., Santhappan, S., Nallasamy, V., John, A., Narasimhan, S., Roselind, F. S., and ICMR-NCDIR-NCRP Investigator Group. (2020). Cancer Statistics, 2020: Report from National Cancer Registry Programme, India. JCO Global Oncology, 6, 1063–1075.

22. Murthy, N. S., Agarwal, U. K., Chaudhry, K., and Saxena, S. (2007). A study on time trends in incidence of breast cancer – Indian scenario. European Journal of Cancer Care, 16(2), 185-186.

23. National Cancer Institute. Survivorship. The NCI Dictionary of Cancer Terms. Retrieved from [https://www.cancer.gov/ publications/dictionaries/cancer-terms/def/survivor] on 4 June 2021.

24. Parkavi C, A., Thangapappa S, and Santha, N. J. (2014). An Experimental Study to Evaluate the Effectiveness of Application of Flavored Ice Cubeson Oral Mucositis among Patients with Cancer receiving Chemotherapy in Devaki Cancer and Research Institute, Madurai. International Journal of Advances in Nursing Management, 2(4), 200-204.

25. Patidar, A., Shivhare, S. C., Ateneriya, U., and Choudhary, S. (2012). A Comprehensive Review on Breast Cancer. Asian Journal of Nursing Education and Research, 2(1), 28-32.

26. Rubia. (2014). A Study to Assess the Perceptions, Beliefs, and Misconceptions about Cancer among Cancer Patients in Selected Cancer Hospitals of Punjab. International Journal of Advances in Nursing Management, 2(3), 152-155.

27. Saxena, S., Rekhi, B., Bansal, A., Bagga, A., Chintamani, and Murthy, N. S. (2005). Clinico-morphological patterns of breast cancer including family history in a New Delhi hospital, India – A cross-sectional study. World Journal of Surgical Oncology, 3(67).

28. Singh, A., and Rana, R. (2015). Body Image and Sexual Problem in Young Breast Cancer Patients in South Indian Population (Abstract only). Value in Health, 18(7), A824.

Received on 03.03.2022 Modified on 19.05.2022

Asian J. Nursing Education and Research. 2022; 12(3):262-266.

DOI: 10.52711/2349-2996.2022.00056