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A patient's perspective on breast cancer management

Sarika Rana
Wednesday, May 17, 2017, 08:00 Hrs  [IST]

The recent update by Indian Council of Medical Research (ICMR) showed breast cancer burden of India is an alarming statistics, 1.5 lakh (over 10 per cent of all cancers) new cases during 2016 and the number one cancer overall. It urges strong need to build a better and advanced healthcare system in India.

On a patient’s outlook a cancer diagnosis not only affects one’s physical, emotional or family life but also to a greater part, the financial side. The one more alarming apprehension for India about breast cancer is, women are being diagnosed at much earlier age compared to Western countries. Authentically, for younger women, not only the survival rate but quality of life post treatment, is also equally important. Besides the cultural barriers and lack of resources there is a lot to consider for breast cancer care. Younger patients below the age of 40s, signify not only a group of divergent requirements but their survival rate and quality of life post treatment, will largely replicate a note to masses on the benefits of early diagnosis. So, this article signifies, innovating practical and scientific module to manage breast cancer care in younger women on a patient’s perspective.

Firstly, talking about awareness and early diagnosis approaches, practically we have seen the success in sessions when designed differently for younger women/general audience or science people. So, rather following conventional awareness methods, designing culturally appropriate communication methods can bring a drastic change to spread health education in masses. And, about early detection, there is a strong need of innovating screening technologies for younger women. Unless mammographic recommendation for the women below the age of 40s; introduction of newer imaging techniques such as Thermography and others should be optimized and implemented for asymptomatic younger women. Even now in global market some giant pharma companies like Roche have started to shift their focus on diagnostic devices from developing drugs.

Coming onto the cultural barriers, being it a dominating factor, to start specialized centers for breast cancer diagnosis can make women to access the screening tests and approach the consultation prior. To make point, we need more women in oncology leaderships; either it is diagnosis or treatment, which in turn will help younger women to be comfortable to be familiar with their treatment, as most of the times patients are kept apart by their families on decision making. Further, for the management of hereditary breast cancer, well planned policies on genetic counseling and management are needed. Advancement in diagnosis will not only open the doors for the opportunity of growth for diagnostic markets but the convenience of quick and accurate diagnosis test results within India is need of the hour of Indian patients.

Different socio economic group and most of the women either not insured or the financially independent aspect is lacking. Financial factor is one of the major concerns to reduce mortality rate in India. For example, accessibility of Herceptin for the treatment of HER2 (human epidermal growth factor receptor type 2) positive breast cancer is still out of reaches to most of the Indian women and unfortunately, 1 of every 5 breast cancers are HER2 type. These figures highlight the need of public health insurance, government policies and regulation for affordable treatment cost and the utmost need of new generics in Indian market to provide complete treatment to the patients. To point out the cost margins of patent and generics, simplest example is the landmark case of Glivoc which gave a thought to change the market monopoly of cancer drugs. Though now some companies have started proving biosimiliar of Herceptin in market, but still this biosimiliar is not a cheaper drug. Quality of generics should also strictly monitor.

Interestingly, as a women patient group rep, I have also witnessed the need of patient awareness and education on treatment cost management. Diverse ChemoPort insertions costs to incorporation of G-CSF or not; are some of the few measures that affect the treatment cost. So, a well analysis on cost management and doctor-patient decision-making is advised.

Cancer diagnosis leads treatment anxiety in younger women. For this, the unspoken concern issues on woman's partnered relationship and family life, need to be addressed and advocated. Supportive care to be given the prime importance to improve quality of life in breast cancer patients. Body image is the primarily concern of younger women. Reconstruction surgery in India is still ignorant by the patients/families for the women who have undergone breast removal. While, unfortunately, due to myths, still most of the patients/families have mistaken view on breast conservation surgery which is advanced and standard care of treatment suitable for younger women under certain treatment guidelines. So, this all need proper professional counseling by healthcare and equally by the patient support groups. Also, the more and more specific and expertise surgeons, affordable and simpler procedures are required to provide the better treatment for younger breast cancer patients.

Progressively, a lot research is being conducted worldwide for breast cancer care management. Mammaprint and Oncotypre DX are the newer techniques which assess an early stage breast cancer patient’s individual risk for metastasis. These tests help oncologist to find breast cancer patients who can skip chemo and other, less arduous and costly methods. Recently, one of the patients in our support group was detected with early stage cancer, underwent surgery and opted for a Mammaprint (a genomic test that analyses the activity of certain genes in early-stage breast cancer, result recommended chemo avoidable in her case. It was a great relief, we (Anandi Sheroes)have observed, it’s not always awareness its fear too which makes delayed diagnosis in younger women. Patients should also make aware on newer diagnostic tests. Though price of these tests is higher but yet it dramatically cut down the overall treatment cost. This also demands the available of these tests in India.

This age group’s patients have to go through different personal and professional phases of life so quality of life post treatment needs to core in these patients. Delayed treatment side effects as lymphedema, hormonal changes such as weight gain, or the psychological issues, these all affects patient’s post treatment life. Professionally, onset of experts in breast cancer as gynecologist, physiotherapist, dietician, or professional counselor may overcome it. Though the emotional support from family, friends and of patient support group, is also essential.

Coming to one more issue is called palliative care; the care at the end of life for patients dying from cancer is also the need of the hour. It includes, pain management, treatment for psychological problems, but most terminally ill Indians are unaware of palliative care options and do not benefit from pain alleviation prior to death. While we (Anandi Sheroes) notice most of the Indian families run for the false alternative treatment and inadvertently neglect the patient’s sufferings, there is a need of educating and supporting people to avail palliative care. Additionally, PalliumIndia’s effort on huge amendment in pain relief medicine accessibility, demonstrates, set ups for palliative care development in India.

An increasing population base and lagging oncologist-patient ratio and poor access to treatment, India needs a lot to observe and design its healthcare system. We also propose to look on these frames to design a model for managing breast cancer care in India. Thus, our article may help patients and doctors, and policy makers to fill the gaps between cancer care management in India.


(Author is a cancer survivor, patient advocate, biotechnology researcher and founder of Anandi Sheroes)

 

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