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Managing breast cancer in young women: A survey on challenges and real world scenario
*Corresponding author: Pragyan Roy, Department of Microbiology, College of Basic Science and Humanities, OUAT, Bhubaneswar, Odisha, India. roy.pragya@gmail.com
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Received: ,
Accepted: ,
How to cite this article: Parida S, Roy P. Managing breast cancer in young women: A survey on challenges and real world scenario. 2026;12:27. doi: 10.25259/ASJO_48_2025
Abstract
Objectives:
Breast cancer (BC) is the most common cancer affecting women globally and is the leading cause of cancer death in 103 countries, including India. Recent studies have shown an upsurge in the incidence of breast BC in young Indian women. It is marked by aggressive histological grade, unfavorable hormone status, and higher death rate. The entire process of screening and treatment of young breast cancer (YBC) patients differs from that of postmenopausal BC patients. Relevant issues like fertility preservation, body image reconstruction, and many other psycho-social issues have to be kept in mind while treating YBC so that the quality of life is maintained post-treatment. Cancer in young women is devastating, as they are working either as breadwinners or homemakers supporting their families. The implications are massive as it shatters them financially, socially, and physically. Though Odisha is a large state with a population of 46.446 million, the Population-based Cancer Registry was established in 2022. So, in the absence of properly compiled data, the oncologists' perceptions can help to comprehend the complete picture of the clinical presentation of BC and the challenges in management in the state of Odisha.
Material and Methods:
An online questionnaire was given to 40 Oncologists prctising in the state of Odisha, India. The questionnaire had five aspects: first, the demographic status of the respondents; second, the screening, treatment, and planning strategy; third, post-operative issues; fourth, psycho- social issues; and the last part was the recommendation by the oncologists to improve the status of premenopausal women suffering from BC.
Results:
The questionnaire survey considered 30-45 years as the age group of young women BC patients. About 68% oncologists confirmed that breast was the most common type of cancer seen in young Indian women, and the maximum number of young women were in American Joint Committee on Cancer (AJCC) stage 2 at the time of diagnosis. Late marriage and nulliparity were the most common risk factors associated with BC in young women. Surprisingly, only 10-30% patients opt for Breast Conservation Surgery (BCS), and 30-60% patients are given Neo-adjuvant chemotherapy. MRI (Magnetic Resonance Imaging) is the most preferred imaging for YBC patients. Most of the doctors recommend gene testing only when the disease is familial. Only 36.4% oncologists said that they always recommend fertility preservation for YBC patients, and egg and embryo freezing was the most preferred method. Early menopause was the most common adverse effect seen post-treatment. The most common psychosocial issue that they observed in young patients was fear of disease recurrence, followed by depression due to a changed body image. Oncologists were of the view that screening healthy individuals who are at high risk could reduce the incidence of BC in young women of India.
Conclusion:
Despite the widespread availability of modern methods of diagnosis and treatment for BC, YBC patients are treated in the traditional way in the majority of cases. It is necessary that practices that are more sensitive to biological, physiological, and psycho-social issues of patients should be followed, which would ultimately improve the survival and quality of life of YBC patients. Further, the treatment should be more patient-centric, and more emphasis should be given on screening and awareness programs to reduce the early onset of the disease.
Keywords
Breast cancer
Survey
Young women
INTRODUCTION
The clinico-epidemiological characteristics of breast cancer (BC) are significantly different in young Indian women when compared to their Western counterparts. The peak age is 60-70years at the time of diagnosis in the Western world; however, in India, the peak age is between 40 and 50 years, so it mostly affects premenopausal Indian women.[1] Global age-adjusted incidence rate (AAR) is 47.8 and mortality rate of 13.5 new cases per 100,000 population (using the 2000 World Standard Population), while in India, AAR is 25.8 per 100,000 women and mortality is 13.3 women per 100,000.[2] In India, though AAR of BC is lower (25.8 per 100,000) compared to France (115.4 per 100,000) and the United States of America (93 per 100,000), but age wise distribution shows a higher percentage, nearly 46.7%, below the age of 50 years, compared to the USA, where it is (19%)[3] Nearly 60% to 70% of patients diagnosed with BC in the United States are in Stage I, and only 10% of women are in stage 4, while in India, 6% to 24% women are in Stage IV and approximately 29% to 52% in Stage III.[4] Previous studies have reported that BC diagnosed at a younger age has a poorer prognosis due to a more aggressive tumor, higher pathologic grade, rapid proliferative rate, involvement of lymph nodes and distant metastasis, and more commonly hormone receptor- negative tumors.[5,6] Early detection of BC in young Indian women is a challenge, as they do not fit into the standard BC screening guidelines. Due to the higher mammographic breast density of young women, special screening methods like contrast-enhanced magnetic resonance imaging (MRI), Digital breast tomosynthesis (DBT), and Ultrasonography (US) have to be used, which are not cost-effective screening methods.
In India, the Hyderabad district has the highest incidence of BC (48 per 100,000), Israel has the highest incidence of breast cancer in Asia (84.6 per 100,000), while globally, France has the highest incidence rate [115.4 per 100,000] National Cancer Registry Programme (NCRP) 2020. The past decade has seen an enormous rise in the number of cases of BC in both urban and rural India (NCRP 2020). Onset of BC depends upon several factors like early age at menarche, late age at menopause, nulliparity, late childbearing, excessive use of contraceptive pills, lack of physical activity, high BMI, consumption of junk foods, and exposure to radiation.[7,8] Though lifestyle causative factors are also seen in the western population, but for them, the median onset of the disease is after 60 years.[6] Thus it is important to identify the factors that are responsible for the early onset of the disease in Indian females. With the rising BC cases in India and the inexplicably high mortality rates it is very important to understand the cancer literacy among patients and caregivers. Further with very low patient to doctor ratio and limited multi-specialities hospitals and poor financial condition of the patients disease management becomes a challenge for the oncologists.
The management of the disease has two different perspectives, which are completely unique to the Indian context. The patients are premenopausal women who are starting or managing a family, so when detected with BC, the chances of having a child in the future are almost negligible. Thus, fertility issues have to be kept in mind while planning the treatment regimen, Post-treatment, co-morbidity and depression due to a change in body image have to be properly addressed by the caregivers. The second aspect is the advanced and aggressive stage of the disease when diagnosed, resulting in a poor prognosis. So, it is very important that proper awareness and screening programs are organized and the patient is made cancer literate. Oncologists have to be sensitized while treating premenopausal women so that their quality of life is not compromised due to changed body image and early menopause. Further, the treatment regimen of young women with BC has several other aspects, like fertility issues, conservation surgery, and neoadjuvant therapy, which have to be kept in mind while planning treatment modalities. Unlike other diseases, in this disease, the treatment is patient- specific, and many alternatives are available, which can only be decided after doctor-patient interactions.
Most of our knowledge is from clinical trials, reports of older women. As younger women are underrepresented in clinical trials in western countries, so they are not considered while making risk evaluation models. There is a paucity of data on the treatment modalities of young women patients, as much of the research is focused on post-menopausal older women. Even during randomized survey studies to evaluate the efficacy of novel therapies or modern tools, a lot of hesitancy is seen in women, more so in younger women. Thus, it is very important that the treatment of YBC patients should be tailored to their disease biology, by considering multidisciplinary methods of diagnosis, ultimately optimizing their quality of life. In recent years, there have been many international guidelines dedicated to young women addressing these issues.[9]
Odisha is a state with a population of 46.446 million (census 2024) comparable to South Korea with 51 million and Spain 48 million population. So, a study done in this state can be extrapolated to give a broader picture of the disease occurrence and the various factors that trigger the early onset of BC in young Indian women. Mostly senior prctising oncologists have given their insights on various aspects of disease occurrence and management, patient behavior, all throughout the treatment procedure. Based on their years of clinical experience, they have identified the probable reasons for the rise in BC in young women of India and the probable screening and treatment modalities available in the state of Odisha [Graph 1].

Therefore, this survey was undertaken to understand and identify possible causes of the rise of BC, factors that impact the management plan, common fears, and side effects as seen by the oncologists during their practice. Understanding the various causes for the rise of BC in young women of India. The various screening and treatment modalities that are available in the state of Odisha. In 1981, the National Cancer Registry Program was started in India to understand the different types of cancers, their pattern, and the magnitude of the disease in different population-based registries, but there is not much data from Odisha, as it previously lacked a population-based registry. Various attempts have been made at the national level to comprehend the epidemiology of the disease in different states of India, but the BC burden, its pattern, and enormity have not been reported from Odisha. Thus, this attempt was made to get an overview of the various aspects of the disease and its management in Odisha.
MATERIAL AND METHODS
The Oncologists were sent a study invitation via a link, and the responses were received online. Responses were also collected from the prctising oncologists in the tertiary care centers in the temple city of Bhubaneswar, Odisha. The questions were prepared by a prctising senior surgical oncologist from a tertiary care hospital and cancer center in Bhubaneswar, and by a biotechnologist working in the field of cancer research. This survey was a part of the institute-based research project approved by the Ethics Committee. The pilot study broadly comprised five sections: The questionnaire had five aspects: first, the demographic status of the respondents, second, the screening, treatment, and planning strategy, third, post- operative issues, fourth, psycho-social issues, and last, the recommendation by the oncologists to improve the status of premenopausal women suffering from BC. The questionnaire was designed to identify the gaps in screening, diagnosis, treatment, and management of BC in young women.
To improve the survey response rate, two e-link reminders were sent to potential participants each 1 month. All survey information was collected anonymously. No written consent was collected, and respondents' submissions were considered to be final. MS Excel was used to analyze the data obtained from the oncologists.
RESULTS
Respondents demographics
The survey responses were received from 40 oncologists: Surgical oncologists (57%), Radiation oncologists (29%), and Medical oncologists (14%). A majority of the professionals (34.29%) were prctising for more than 20years, followed by oncologists, 22.86% each for oncologists prctising for 10-20years and comparatively younger physicians who practiced less than 5 years.
Epidemiological factors and staging of the disease
There is a lot of debate on the age bracket of women who should be considered young women BC patients. In this survey, the majority of the oncologists (59.10%) were of the opinion that patients within 30-45 years should be considered as young women BC patients, while 27.3% of the oncologists were of the view that patients within 30-40years should be treated as young breast cancer (YBC) patients [Figure 1]. As per the ESO (European School of Oncology) and ESMO (European School of Medical Oncology) guidelines, all women below the age of 40 at the time of BC diagnosis should be considered as young women.

Over 87% of the oncologists revealed that most of their BC patients were in the age bracket of 45-70 years, while only 13% oncologists reported that their patients belonged to 35-45 years [Figure 2]. In their total cancer cases, 17.4% oncologists reported that nearly 30-60% cases were BC cases, but the majority of the physicians reported that BC cases were 10-30% of the total cases.

To understand the enormity of the issue, when asked about the percentage of YBC amongst the total cancer patients treated in the last five years, a majority (65.2%) of the oncologists answered 10-30%. Approximately 21.7% of oncologists confirmed that 30-50% of their patients were YBC patients, and 13% physicians reported that less than 10% of their patients were YBC patients. Still, the percentage of YBC patients amongst the total BC cases is alarming [Figure 3]. From their years of practice, most of the YBC patients were in the American Joint Committee on Cancer (AJCC) stage of disease, Stage II [Figure 4]. As per the oncologists, the most probable reason for the rise in BC cases in young women of India was due to late marriage and nulliparity (35%), a majority of the doctors (31%) also attributed this to better screening techniques.


Imaging and genetic testing
The third aspect of the survey was on the screening and treatment of the disease. MRI was the preferred diagnostic approach for the detection of clinical abnormalities in YBC patients, followed by positron emission tomography– computed tomography (PET-CT), and 31.3% physicians did not follow any special screening strategy [Figure 5]. Though genetic counseling should be offered to every young woman irrespective of tumor type, grade, and family history, only 48% of oncologists had a genetic counselor in their team. Genetic mutation testing should be done as a fast-track approach before the commencement of therapy, for risk assessment, and for response to drugs. Still, gene testing was not recommended by oncologists for every case, but only for cases with a family history of the disease. Some physicians opt for gene testing in either triple-negative breast cancer (TNBC) or Human epidermal growth factor receptor 2 (HER2) positive cases. BRCA1/2 is the most preferred gene panel test, followed by multi-gene testing for BRCA1/2 and PALB2. Gene testing is not regularly practiced in screening strategies, and the most common reason for not doing so is its high cost (39.1%). As the patient does not fit into NCCN guidelines, so 34.8% oncologists do not recommend gene testing, 21.7% do not recommend due to the absence of lab facilities and the cost is not included in the insurance, and only 13% are of the opinion that since the patient is not interested, they cannot proceed with gene panel testing [Tables 1 and 2]. Based on their practice, 68.2% oncologists said that TNBC was the most common variant seen in young women, followed by hormone positive 18.2% and HER 2+ 13.6% [Figure 6].


| Every case | 47.8% |
| Cases with a family history of cancer | 69.6% |
| Cases with distant metastasis | 13% |
| TNBC | 39.1% |
| Cases with multi- centric multifocal cancer | 21.7% |
| HER 2 positives | 8.7% |
| Never | 0% |
TNBC: Triple-negative breast cancer
| Not cost-effective | 39.1% |
| Patient does not fit into NCCN guidelines | 34.8% |
| Cost is not included in the insurance coverage | 21.7% |
| Absence of lab facilities | 21.7% |
| Patients are not aware and uninterested | 13% |
NCCN: National comprehensive cancer network
Treatment and planning
It is very important to understand that, physiologically, premenopausal young women have different issues that have to be addressed while deciding on the treatment planning. 44% oncologists reported that 75-100% of their cases were planned by the Multidisciplinary Tumor Board (MDT) 24% of the oncologists said 50-75% cases were planned by MDT, 8% of the oncologists reported that 50-75% of their cases, and 16% confirmed <25% cases were planned by MDT. Oncologists (34.3%) recommend neoadjuvant chemotherapy for 30-60% cases, and only 26.1 % physicians recommend it for more than 60% of cases. Axillary Lymph Node dissection (AxLND) was the most common method for axilla management, followed by sentinel lymph node biopsy (SLNB) for YBC patients. breast conversion surgery (BCS) is still not opted for by many YBC patients. Nearly 26.1% doctors said >60 % of their young patients opted for (BCS), 26.1% reported 30-60% of their patients opted for BCS, 39.1% said only 10-30%, and 8.7% said <10% of their YBC patients opted for it [Figure 7].

To have a long disease-free survival without much compromised quality of life, proper treatment and planning have to be done, keeping in mind fertility issues, body image, and work-life balance. The majority of the physicians (59.1%) recommend fertility preservation occasionally, and only 6.4% oncologist always recommend fertility preservation for YBC patients. Egg or embryo freezing (52.2%) is the most common method, followed by ovarian suppression 34.8% and ovarian freezing (4.3%) [Table 3]. Though fertility preservation is opted for, a successful pregnancy post completion of treatment is very low [Figure 8]. Many oncologists have reported treating pregnant women with BC [Figure 8].
| Fertility preservation techniques | % of respondents |
|---|---|
| Egg or embryo freezing | 52.2 |
| Ovarian tissue freezing | 4.3 |
| Ovarian suppression | 34.8 |
| None | 8.7 |

Regular check-ups and completing the treatment cycle will not only reduce the chances of disease recurrence but also have a good prognosis. Discontinuity of treatment was very common in YBC patients, and the major reason was financial crisis, followed by lack of family support, fear of adverse effects, and family responsibilities. The most common adverse effect of the treatment, as seen in their cases, was early menopause, followed by fatigue, tiredness, weight loss, and hair loss, then it was Lymphoedema, and the least common being osteoporosis and osteopenia.
Psychosocial issues
The change in lifestyle, late marriage and nulliparity are some of the few causes for the rise in BC in young women of India. As per the survey the primary risk factor was late marriage and nulliparity. While more awareness and screening programs have resulted in more number of cases being reported [Figure 9]. It is one of the most dreaded diseases, and its recurrence was the most common fear amongst patients. A majority of the patients also feared transferring the disease to their children. Depression due to altered body image was also very common amongst YBC patients. The majority of the oncologists (52.2%) were of the opinion that screening of healthy individuals who are at high risk can lower the adverse effects of the disease. While some oncologists were of the view that better research or screening methods can lower the adversities of the disease to a great extent.

DISCUSSION
The disease burden due to BC in India is higher than the world. In 2020, the total reported C cases were 7.9% of the global cases, and 13% of global mortality due to BC was from India. The incidence of BC in young Indian women is increasing at an alarming rate. Reports suggest that the rising burden of BC in younger women needs special attention in terms of disease management, treatment cost, and financial security. To bridge the gap between treatment and disease management, this study was conducted to understand the oncologists' perspective on the disease in young women of India.
The online survey was given to 100 prctising oncologists in Odisha, and only 40 responded, so the response rate was only 40%. The majority of clinicians were surgical oncologists. Nearly 39.2% were oncologists working in this field for more than 20years. These doctors have seen the gradual development in the field of oncology in India. Some doctors are of the view that, though many breakthroughs have occurred in this field, precision medicine is still a big challenge, and there are a lot of gaps in the treatment strategy. One of the prime reasons for this is the very limited number of oncologists who are well-trained and well-aware of all the latest developments in this field.
When coming to the status of BC in young Indian women, many important issues have been identified by this survey. Most of the oncologists were of the view that patients within the bracket of 30-45 years should be categorized as YBC patients. A few reports consider women diagnosed with BC at ≤ 40 years of age as YBC patients, while others consider it to be ≤45 years.[10] In a prospective study (1980-2000) from Tata Memorial Hospital, Mumbai, the median age of presentation was 43 years. In our survey, the oncologists were also of the view that 30-45 years can be considered as YBC patients. As per the BCY5 guidelines developed by the ESO and ESMO, women under the age of 40years are considered young women. Since an annual rise of 0.5%-2% is seen in the incidence of BC across all regions of India and predominantly in the younger age group(<45 years), the prctising oncologists suggested that 30-45 years can be considered as YBC.[11] More so with increased life expectancy, late age of marriage and child rearing, women are about to start their family life or are a few years into it. So this age bracket (30-45years) can be rightfully considered as Young Women. The issues catering to young women, like egg preservation or nonfertility gaps, should be rightfully addressed for urban Indian women who have been detected with BC and are undergoing treatment in this age bracket.
In another study from a tertiary care center in India, 16.2% of their total BC patients were YBC patients.[12] In our survey, also, the maximum number of oncologists were of the opinion that 10-30% of their patients were YBC. In the study by Bajpai[12], the maximum number of patients had AJCC stage III presentation and TNBC, 34.4% of the total cases, followed by Her2+. In a retrospective study done by Dinsaw[13] for two decades, TMH Mumbai reported that the maximum YBC patients were Stage III at the time of presentation, with larger tumor size, mostly TNBC. In another prospective study from a tertiary care hospital in Hyderabad between January and December 2019, 14.3% (354 out of 2470) of BC patients were below 40years. They reported that the maximum of their YBC patients and high- grade invasive ductal carcinoma (92.7%) with advanced stage (stage III or IV), 39.5% with high-grade (grade III), 34% with high proliferation index, and 46% with TNBC.[14] In this survey from the eastern part of the country, the majority of oncologists confirmed that TNBC was the most common type of cancer in young women; however, the AJCC stage at the time of initial presentation was stage II. In the prospective outcomes in sporadic versus hereditary (POSH) cohort study done in 127 hospitals in the UK and the young women BC study conducted in the USA, also reported that BC in young women is in a more aggressive form, irrespective of the stage, and the chances of recurrence are very high.[15] The potential genetic susceptibility of Indians to TNBC requires research to identify specific genetic markers. This might be one of the reasons for aggressive tumors, de novo metastatic BC, and high mortality in YBC patients. The first step towards this is genetic counseling, genotyping, histopathology testing, and prospectively maintaining a patient database in all tertiary care hospitals and research centers working on BC.
The standard screening method of mammography has a much lower sensitivity for YBC patients who are said to have mammographically dense breasts. Further, it has been hypothesized that due to dense breasts, these lesions remain masked and when detected are in the form of large aggressive tumors. The US preventive task force does not recommend routine screening for BC patients aged 40-49 years; however, if at high risk, then MRI is recommended.[1] In a prospective study from a tertiary care hospital in Hyderabad, Sudhir[14] have reported that MRI with mammography is a very successful method for the characterization of lesions and the detection of cancer in young Indian women. The prctising oncologists were of the view that the screening strategy was the same for all BC patients, irrespective of age; however, MRI was the preferred imaging strategy for young women patients with dense breasts. Regular clinical examinations and monthly breast self-examinations and ultrasonography for women <40 years and mammography for women <40 years are essential for early diagnosis of BC. As per the latest survey by the National Family Health Survey (NFHS-5)[16] only 1% Indian females in the reproductive age group (30- 49 years) have undergone BC screening through clinical breast examination (CBE). This is much lower than the recommended guidelines of at least 70% coverage. To lower the burden of the disease incidence in young women, it is very important that more women undergo CBE and self- breast examination regularly.
Precision oncology is the need of the hour, where a treatment plan is made based on genetic mutations and a detailed discussion with patients. Despite the wide availability of gene testing, there is very little clarity in the current guidelines enumerating indications for the same, so not all oncologists prefer it. Surprisingly, not all oncologists recommend gene testing as it is not covered by the insurance companies. Primarily due to a lack of awareness amongst patients, oncologists do not recommend gene testing for all cases, and wherever patients are interested, there is a shortage of genetic counselors who can explain the practical implications of gene testing to patients. Though multigene panel testing [multigene panel testing next generation sequencing (NGS) platform] is currently available and coming up, which can give predictive and prognostic information to guide management of the disease, some oncologists do not recommend gene testing as the patient does not fit into the National Comprehensive Cancer Network (NCCN) guidelines. Most oncologists said that they go for gene testing in YBC patients only when it is familial, and mostly recommend BRCA1/2. As per the 2014 NCCN guidelines, women with mutations in non-BRCA genes, like PTEN, ATM, CHEK2, TP53, PALB2, or CHEK2, also have an increased risk of getting BC (NCCN).[17] By multigene panel testing, these deleterious mutations can be identified in cancer susceptibility genes, and the high-risk individuals can be identified. Oncologists should be encouraged to think beyond BRCA1/2, that there are multiple gene panel tests that, if done, can predict disease recurrence and patient response to chemotherapy. However, financial factors play a very important role when opting for these tests, as they are not covered by insurance companies.
Patient-specific treatment based on tumor grade, molecular characteristics, metastasis, and histology is made by MDT. MDT for tumor includes doctors (oncologists, surgeons, radiologists, pathologists, and palliative care specialists), nurses, dieticians, physiotherapists, and occupational therapists.[18] The maximum number of oncologists (44%) said that 75-100% cases were planned by MDT. Again, due to the lack of multispecialty hospitals with a proper team of oncologists, MDT is not the usual practice for this part of the country. Though SLNB has completely replaced AxLND for axillary management in BC patients worldwide, in India, it is still not the most preferred option. The majority of oncologists preferred AxLND over SLNB for axilla management for YBC patients. Due to a lack of properly trained surgeons, unavailability of radioisotopes (RI) or frozen sections, and financial constraints, many oncologists prefer AxLND over SLNB. In another online survey, nearly 68% surgeons preferred SLNB over AxLND, and the most probable reason for not following this was lack of resources and training.[19]
In the past, mastectomy was the only option for locally advanced BC, triple negative BC, and HER2+ (human epidermal growth factor expressing tumors). At present, a localized approach targeting the tumor by surgery and radiation therapy is followed. The systemic approach includes endocrine therapy for hormone receptor disease, anti-HER2 therapy for HER2-positive disease, and chemotherapy. Since in India the initial stage of disease presentation is at a higher stage, mostly Stage III, neoadjuvant chemotherapy (NAC) is one of the preferred methods before surgery. NAC gives a local as well as systemic control of the disease and provides an in vivo chemosensitivity test for a particular drug.[20] Most oncologists were of the opinion that 30-60% of their YBC patients were administered NAC. A multicentric retrospective survey carried out in Chennai from 2008-2014, dealing with 4918 patients, 78% had opted for mastectomy.[21] As per the reports, out of the 100,000 patients that are treated with BC in India, only 1000 patients are treated with Breast Conservation Treatment.[22] This low rate of treatment is due to a late stage at presentation, with only a few centers having the facility of radiation therapy and pathology to support the conservation surgery process. Similarly, in this survey, BCS was also only done in tertiary care hospitals in Cuttack and Bhubaneswar, as trained breast oncologists and radiation therapy were available in limited hospitals. In the current survey, the maximum number of oncologists felt that only 10-30% YBC patients opted for BCS. Due to the fear of disease recurrence, many young patients do not opt for BCS. Secondly, the cost factor is also considered for not opting for BCS, as patients coming from distant places have to incur an additional cost of travel and stay. Though oncoplastic surgery is slowly getting accepted and is mostly done in early BC cases, selecting the right cases is still a big challenge for breast uncourageous. It is expected that soon mastectomy will become a limited procedure, especially when BCS or oncoplastic cannot be done due to technical reasons. However, long-term safety outcomes need to be studied for the Indian population as the disease pattern over here is very different from the West, and proper selection of cases is very important, and patient health and not good cosmesis have to be kept in mind while doing oncoplastic.[23]
With the increasing incidence of BC, fertility issues amongst the young cancer survivors are also likely to increase in India. In a study from Northern India, it was found that oncologists have very limited knowledge on nonfertility issues, especially fertility preservation methods that need to be done before the onset of chemotherapy.[24] In our survey, also very few oncologists recommend fertility preservation in young BC patients. Sensitization of oncologists towards fertility issues for YBC patients is essential so that they can plan the treatment after adopting fertility preservation (FP) methods. Another reason for not going for FP for YBC patients is managing finances, as it is not covered by insurance companies. Whenever fertility preservation is done, only 1-5% successful pregnancies have occurred. Though fertility preservation is opted for, according to this survey, only 1-5% cases were successful. In a similar study by Bajpai[12], only 8.5% of the YBC patients opted for FP, and out of which 57% were successful. So it is more important that nonfertility clinics should be attached to these multispecialty hospitals, and patients should be made aware of the gonadotoxic side effects of chemotherapy.[25] Further proper fertility preservation techniques should be adapted for young cancer survivors who wish to enjoy parenthood post-treatment. In this survey, egg or embryo preservation was the most preferred method for fertility preservation.
With increasing age at marriage, many women would not have started their family when detected with BC. Nulliparity and delayed childbirth are independent risk factors for getting the disease. Though several lifestyle factors like age at first parity, nulliparity, drinking of alcohol, smoking, eating fatty food, and lack of physical activity have been identified for increasing the incidence of breast cancer in Indian females, the cause behind the increasing cases of BC in younger Indian females is yet to be identified. In this survey, most oncologists were of the view that late marriage and nulliparity are the prime causes for BC in young Indian women. In a multidisciplinary study carried out in three Indian states, Delhi, Kerala, and Assam, it was found that there was low awareness amongst women about BC, with a slight understanding of age and hereditary risk factors, but no knowledge of reproductive and lifestyle factors that cause BC.[26] India does not have a nationalized screening program for BC, which is perhaps the main reason for low awareness amongst patients.[27] In another study from Maharashtra it was found that BC risk was 8 times higher in unmarried women, 3 times more amongst nulliparous women, 1.5 times high in women who use hormonal contraceptives, 10 times more in women who never breastfed, 4.5 times more in women with ovarian diseases in comparison to married, non- nulliparous, women who do not use hormonal contraceptives, women who breastfed and women without ovarian diseases respectively.[28]
The common side effects of chemotherapy include anemia, nail discoloration, insomnia, fatigue, and nausea.[29] Psychological issues include altered body image, fertility issues, lowered self-esteem, depression, anxiety, and sadness. Since these young women have physical, psychological, and financial concerns, they require multidisciplinary counseling before embarking on the treatment journey. The major adverse effect of the disease is early menopause, as reported by the oncologists. This is due to the gonadotoxic effect of the chemotherapy. One of the prime reasons for discontinuance of the treatment is financial crisis. Though there are many treatment schemes given by the Government of Odisha, like Biju Swastha Kalyan Yojana, which covers a major part of the treatment, many patients who are illiterate and from rural backgrounds are still readily misguided by fake caregivers. Despite limited out-of-pocket expenditure, some of the patients do not turn up. Sometimes this out-of- pocket expenditure might be impossible to meet, and then the patients do not turn up. Most oncologists were of the view that strategic screening of potentially high-risk patients can reduce the risk of BC in young Indian women.
Some of the recommendations for disease management include, “Robust screening programs with awareness for BC. Financial and social support for YBC patients.” “Young women should be diagnosed early by better screening methods and managed with care and genetic counseling.” “Increase the awareness among young people regarding breast cancer” “Increment of insurance coverage”
Questionnaire
A survey on the status of breast cancer in young women patients (35-45years) of India
Please answer with reference to your practice/personal experience.
1. Which State of India do you practice primarily in? ……………………
2. You are: Surgical Oncologist, Medical Oncologist, Radiation Oncologist,
3. Years of experience as an Oncologist( post qualification) (tick one box)….
| <5 yrs | 5-<10 yrs | 10-<20 yrs | >=20yrs |
4. Breast cancer cases as a part of total cancer cases in your practice ( tick one box)
| <10% | 10-30% | 30-60% | 60-100% |
5. Which age group do most of the female BC patients belong to? ( in your practice)
| 20-35years | 35-45 years | 45-70 years | >70years |
6. Percentage of YBC patients (35-45 yrs) amongst the total female breast cancer patients seen by you in the past 5 years?
| <10% | 10-30% | 30-50% | >50% |
7. In your opinion, the increasing trend of BC in young patients is due to (please assign score 1 for the lowest and score 5 for the highest).
| Better screening techniques | obesity | alcohol, smoking | Late marriage and nulliparity | Stressful lifestyle |
8. AJCC stage at presentation of YBC patients (please mention percentage if you have analyzed your data, else select the most common stage at presentation)
| Stage I | Stage II | Stage III | Stage IV |
9. Do you employ any special screening strategies for young women patients with breast cancer (please tick one that you find most relevant to your practice) MRI, PET-CT, scintimammography, other methods …………………………
10. How often do you recommend MRI Breast for YBC patients?
| <25% | 25-50% | >50% | 100% |
11. Most common variant of BC in young women patients(tick one)
| DCIS | ILC | TNBC | HER 2+ | Inflammatory breast cancer | HR positive |
12. Which is the most preferred surgical intervention by young women suffering from breast cancer?
| MRM | BCS |
13. Which is the most common method for management of axilla in your practice?
| AxLND | SLNB | No surgery | Radiotherapy |
14. How many of your young women patients opt for BCS
15. How often do you recommend fertility preservation in young patients?
Always Sometimes Never
16. Which of the following fertility preservation options do you normally advise for YBC patients?
| Egg or embryo freezing | Ovarian tissue freezing | Ovarian suppression |
17. How many cases of breast cancer with pregnancy (at initial presentation) have you dealt with to date?............ .........................
18. How many successful pregnancy cases following completion of treatment in your practice? (number of cases) (leave blank if you don’t remember)………………………
19. What percentage of your YBC patients undergo Neoadjuvant chemotherapy
20. Which age group of patients who have undergone complete treatment has the highest ipsilateral breast/ axillary recurrence?
| Egg or embryo freezing | Ovarian tissue freezing | Ovarian suppression |
21. Which age group of patients have the highest incidence of distant metastasis after treatment?
| 20-35 | 35-45 | 45-70 | >70yrs |
22. Have you seen more disease recurrence in young patients compared to older ones? Yes No
23. Which is the common long-term adverse effect in young patients? (tick as many as you find relevant)
| Fatigue, tiredness, weight loss, hair loss | Early menopause | Lympho-edema | Osteoporosis and Osteopenia |
24. Common psychosocial issues that you have seen in your young patients (increasing order) ((please assign score 1 for the lowest and score 5 for the highest).
| Fatigue, tiredness, weight loss, hair loss | Early menopause | Lymphoedema | Osteoporosis and Osteopenia |
25. As an oncologist, how often do you recommend gene testing for gene mutations in YBC patients? (Select as many as you find relevant if you don’t select either of the first or last boxes.
| Every case | Cases with a family history of cancer | Cases with distant metastasis | TNBC | Cases with multi-centric multifocal cancer | Her 2 positive | Never |
26. Which of the following tests do you commonly advise for breast cancer patients?
| BRCA1/2 | BRCA1/2,and PALB2 | Gene Panel Test |
27. Your reason for not recommending gene testing (tick as many as you find relevant)
| Not cost-effective | Patient does not fit into NCCN guidelines | Cost is not included in the insurance coverage | Absence of lab facilities | Patient is not aware and uninterested |
28. Do your Patients have access to a genetic counselor ( in your City/Town)
Yes No
29. What percentage of your breast cancer patients have their treatment planned by a Multidisciplinary Tumor Board (MDT)?
| <25% | 25-50% | 50-75% | 75-100% |
What is the percentage of your breast cancer patients who are unable to complete the treatment prescribed by the MDT
| <10% | 10-20% | 20-30% | >30% |
What is the main reason for discontinuation of treatment amongst your young breast cancer patients?
| <10% | 10-20% | 20-30% | >30% |
30. How can the adverse effects associated with treatment in breast cancer be prevented for young patients? (tick the most relevant option, or you can mention your own)
| Screening of healthy women at high risk (hereditary) of developing the disease | Screening of all young women with USG | Gene panel test followed by screening | Research on better screening methods for young women |
31. In terms of survival, do young female breast cancer patients do better than older patients? Yes No
Your suggestions or recommendations for the management of breast cancer in young women of India
CONCLUSION
Out of the 1.46 billion population of India in 2025, 183.8 million women are in the age bracket of 30-49 years. Women in their reproductive age have to balance their work life and also start a family. During this phase of their life, if diagnosed with BC, apart from social stigma, financial burden, and other comorbidities, they also have to deal with fertility issues and early menopause. In this survey, also very few oncologists had recommended egg preservation for their YBC patients, and the success rate is also very low. Nonfertility is a very pertinent issue and has to be properly addressed. In the current survey, the majority of YBC either had a child or did not plan to have one. Few patients were sensitized about the egg preservation procedure, but the successful pregnancy rate was very low. Thus, collaboration between Oncologists and fertility experts would result in timely referrals and hopefully successful pregnancies post-treatment.
Increasing incidence, ineligibility for breast cancer screening, more advanced stages at presentation, triple negative status in the majority, poor quality of life, unaddressed psycho- social and fertility issues are very significant challenges that need to be addressed in young Indian breast cancer patients. Unraveling the genetic basis of cancer in this subgroup would help identify candidates for early screening in the absence of a strong family history. As mentioned in previous studies, India has a higher percentage of TNBC, which is considered to be associated with shorter disease-free survival and more aggressive tumors in YBC patients. Thus, further research is required to identify the genetic markers responsible for the molecular heterogeneity of the disease.
Though the incidence of BC in India is low when compared with the West, mortality rates are comparable with those of developed countries. This might be primarily due to a lack of screening programs, infrastructure facilities, and a very small number of oncologists. Lack of awareness amongst the masses results in locally Advanced breast cancer (LABC) and poor prognosis. So regular awareness programs in schools and colleges, on breast cancer, would hopefully contribute to detection at early stages. Offering Breast Conservation with oncoplastic reconstruction can improve the quality of life of these young patients by reducing the body image disturbances and thus reducing their anxiety and depression. A dedicated effort is needed as part of a comprehensive plan to assess the true status of breast cancer in young women in India, unravel its genetic basis, and formulate recommendations for screening of young women and standardize management across the Country.
Author contributions:
SP and PR: Conception and design, data analysis and interpretation, manuscript writing.
Ethical approval:
Institutional Review Board approval is not required as it is an online study without involving any patients..
Declaration of patient consent:
Patient's consent is not required as there are no patients in this study.
Conflicts of interest:
There are no conflicts of interest.
Use of artificial intelligence (AI)-assisted technology for manuscript preparation:
The authors confirm that there was no use of artificial intelligence (AI)-assisted technology for assisting in the writing or editing of the manuscript, and no images were manipulated using AI.
Financial support and sponsorship: Nil.
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