Inspirational Stories by Breast Cancer Patients

We hear about breast exams and mammograms from doctors all the time. We need however to learn from those who have fought the fight themselves. Aspira Lab & I-SHARE Foundation requested a few breast cancer patients to share their stories. The eagerness and ease with which these women have come forth is indeed overwhelming. As these brave women dispel common myths, describe their journey from fear to hope, they share what may be life-saving advice.

It can happen to anyone at anytime

What a lot of us don’t know is that breast cancer can happen at any age and stage of life. Priyanka was diagnosed at age 35, Janaki was 34, Deepti was 28 and Mala 32 (name changed) was still breastfeeding her daughter at the time of diagnosis. Young women often get diagnosed late because they don’t think they can get cancer in the 30s. Some get false reassurances without a proper diagnostic workup.

Photo: Shared by Priyanka Vanjari

Priyanka shares, “When I felt a lump I was so scared, I went for an ultrasound test without telling anyone. The initial report was negative, but I was still worried. I went for a specialist opinion where a repeat ultrasound and subsequent needle biopsy diagnosed it as cancer” She exhorts, “Don’t hesitate to take a second opinion when your gut tells you something is wrong”.

Most breast cancers in India are seen in women in their 40s and 50s but the elderly can get it too. Parvati Devi was 82 years old and was hale and hearty for her age when she noticed a small lump. It was painless and she wasn’t bothered by it but mentioned it to her sister in law. Her sister-in-law knew better than to waste time “You find the right specialists, you trust their advice and complete treatment” she says from experience.

Don’t neglect a symptom just because it’s not bothersome

Photo: Shared by Kshitija Karekar

Kshitija (47) noted a painless lump. It’s easy to ignore something that doesn’t limit your ability to carry on with your day. Kshitija didn’t waste time. She confided in her dad, saw her gynaecologist right away and was promptly referred to a breast surgeon for further diagnostics and treatment. The symptom may not always be a discrete lump.

Sudha (54) felt a hardness in one area of the breast that didn’t feel like the rest of her breast. She spoke to her husband and promptly saw her gynaecologist. She too promptly referred to a specialist.

Priyanka noticed a lump but also retraction of the nipple. Lakshmi (54) noticed what simply looked like a bruise on the breast. Others may have unusual nipple discharge, thickening or redness of the skin or a lump in the armpit as the first symptom. It’s important to not try to diagnose yourself. Don’t try to decide if your complaint needs attention- it’s easy – “When in doubt get yourself checked out”

Don’t wait till you have a problem- go for an annual breast exam

Photo: Shared by Bhavana Nandwani

Bhavana (58) did not feel a lump. She had her tumor picked up on an annual mammogram done as part of a routine health check. Women often believe they should only go for a mammogram if and when they have a problem. A screening mammogram done annually after 40 can observe changes in the breast over time.

A tumor can be picked up early, long before it can cause symptoms. Treatments become simplified and a threat to life can be avoided.

Bhavana urges “Go for a mammogram annually. Don’t say that you’ll get it to it next week, just get it done. If you cannot afford it, there are free medical camps yearly, just go and do the test” She continues, “I hope and pray that women take their bodies seriously. We spend at beauty salons, we can spend on an annual health check… do it because you love yourself and your family.”

Bhavana was able to avoid radiation as well as chemotherapy, as her tumor type was favourable and she was diagnosed at an early stage. Every woman over 20 should perform self-exams monthly. After 30, get an annual clinical breast exam (ie physical breast exam by a doctor) and after 40 get a good quality mammogram done yearly.

The diagnosis can be shocking, the journey can be hard, but you do what needs to be done

Photo: Shared by A.S. Janaki

Janaki and her husband had just relocated to Pune with their 3-year-old daughter. Starting on a new job, getting diagnosed with cancer while parenting a toddler was needless to say, overwhelming.

“When I heard the word cancer, my mind went blank…. I imagined there was nothing left to life.  When the diagnosis sunk in, there was a  phase of confusion -should we go back to Chennai or stay in Pune? Should I undergo reconstruction with my mastectomy?”

Janaki and her husband had a lot of questions and concerns but they lovingly stuck by each other, taking baby steps. They took all the help they could get from friends and family. His company helped her treatments get covered by insurance. They were fortunate to find doctors and hospital staff willing to do the extra hand-holding they needed.

Janaki says, “It was really difficult. When I lost my long hair during chemo, that was very hard.  After my surgery, when my baby would want me to pick her up and I couldn’t, I would cry. Now I realise it was just a phase, and I should not have lost hope. My hair has grown back, I happily lift my baby and I am thankful to God and everyone that has supported us”

Some cancers can be hereditary, and it’s good to know if yours is

A lot of these women were the first in their family to have been diagnosed with cancer and most breast cancers are not hereditary. Priyanka however had seen multiple family members afflicted with breast cancer, including her mom.

When Priyanka was diagnosed with breast cancer, she was advised to undergo genetic counselling and then genetic testing. A simple blood test revealed that a harmful gene defect was in fact responsible for this family history. Even after she would complete cancer treatments, this gene defect would leave her at high risk of developing new cancers in the future- in the opposite breast and in the ovaries.

Priyanka was given the option of taking chemotherapy before undergoing surgery, allowing the tumor to shrink in size while giving her time to think about her surgical options. She decided she wanted to put this behind her once and for all. After she finished her chemotherapy, she planned to undergo a bilateral mastectomy with reconstruction and prophylactic removal of tubes and ovaries at the same time. It was a big decision but she was keen on using her genetic test report to her advantage and minimise her future risks. “There are a lot of factors that contribute to healing. The first and foremost is your own positive approach towards the treatment. Secondly finding a positive environment at home, support in the workplace and in every person you meet. Third, (or maybe this should be first) is a good doctor who will tell you the truth and does not scare you. Last but not the least, timely medication in a good hospital”

Deepti, Kshitija, Janaki and Mala have all undergone genetic testing and the knowledge has helped them make better decisions for their further care.

It’s not a one size fits all when it comes to treatment

There are several different types of cancer operations. Lakshmi and Kshitija were able to undergo removal of only a part of the breast (lumpectomy) and radiation to the rest of the breast. Bhavana made the choice to have her whole breast removed to avoid radiation. Priyanka decided to undergo immediate reconstruction where the envelope of the breast skin was preserved and new breasts created using her own tissues.

Mala (name changed) was not able to undergo immediate reconstruction given the complexity of the case at the time of diagnosis. She is now 4 years out, planning to undergo reconstruction next month, but is struggling to explain to employers and insurance providers that this is ‘not a cosmetic operation’. Preservation of body self-image, self-esteem, psychosexual wellbeing is important for quality of life and should not be denied to any cancer patient. We need women policy makers, insurance workers and patient advocates to help raise awareness about this topic.

Just like surgical options for treatment vary, so do medical treatments.

Sudha and Bhavana had a subtype of the tumor where they could potentially avoid chemotherapy. The patented gene expression profiling test needed to confirm the safety of omitting chemotherapy can cost 2- 3 lakh Rupees. The cost that can be prohibitive to most who may benefit from it. The samples get sent abroad and there are logistical issues. In Sudha’s case, the test took several weeks longer due to a glitch, and she had to take one cycle of chemo during the wait. We need local research and innovation to make such type of testing easy affordable and accessible. Oncologists to play safe meanwhile may be overtreating some patients who may not benefit from chemotherapy.

Survivorship is its own phase and you still need help

The phase that starts after treatment completion is referred to as “survivorship”

Photo: Shared by A.S. Janaki

Lakshmi had moved to Pune after having completed all treatments, but she wasn’t sure she was cured and was going to be ok. There was a nagging fear of recurrence and she constantly questioned what was right and wrong for her.

She was advised to resume work as a teacher which she did. The decision infused her with positivity, sense of purpose and confidence to go on.

“I am lucky to have a great team of doctors -they are not merely my doctors but also my counsellors, friends & life coaches who have simplified my journey” “It’s been a journey which begins with ‘why me’ and concludes with ‘better me’” she adds lucidly.

Lakshmi has been supporting I-SHARE foundation to help support other breast cancer patients. With her school, she sponsors drain care kits for patients who have undergone breast surgery. This helps them move around early after surgery and makes taking care of drains a lot easier.

It’s important for breast cancer patients to continue lifelong follow up with their oncologists and undergo regular exams and tests advised. Bhavana says “If you can’t handle the stress of being diagnosed with breast cancer, talk to your oncologist and get into a support group. Build back to a happy frame of mind and tell yourself “I am a cancer survivor and I will always be good to myself” 

*This content is to provide information only and is not meant to be a substitute for medical advice by a doctor. Patient information is being shared with their consent and anonymity preserved where requested.

 

Concept and Design
Subodh Gadgil
Founder, Aspira Labs

Story contributors:

  • Mrs Bhavana Nandwani
  • Mrs Sudha Damodar Khare
  • Mrs A.S Janaki Suriyaprakash
  • Mrs Priyanka Vanjari
  • Mrs Lakshmi Gandhi
  • Ms Kshija Karekar
  • Ms Deepti & anonymous contributors

Medical advice & editing
Dr Pranjali Gadgil
Breast Surgeon, Jupiter Hospital, Pune
Founder and Director: I-SHARE foundation.

I-SHARE Foundation
isharefoundation@gmail.com
www.isharefoundation.org
A Charitable Institution

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