Health equity and breast cancer: A personal perspective from the South Asian community

By Jodie Sanassy, Senior Expert Strategist, IPG Health Expert 

Jodie works as a pharmacist in our IPG Health Expert team. Having overcome breast cancer, she partnered with Girl vs Cancer on Pretty Little Thing’s inclusive swimwear launch for cancer survivors.

We all have a story, so tell us about your journey 

My journey actually began 10 years before I was diagnosed with breast cancer. When I was 23 I had a stroke. It was hard to comprehend at the time, and it was only years later that a hole in my heart was discovered—this had been the main cause of the stroke.

In 2021 I had surgery for this and, while recuperating and checking my heartbeat, I felt a lump. It was in a complete blind spot that I wouldn’t have normally checked. After further tests, it turned out I had an 80-mm tumour.

It made me realise how important thorough checking is and how easy a tumour is to miss in those vital early stages.

What did you learn about yourself during your journey?

I learnt that perspective will make or break you. I could either keep wondering why this happened to me or give myself the best mindset so my body is physically well enough to respond to the drugs and surgery.

You’re not in this situation by choice, and I don’t believe in “fighting” cancer. Cancer is a game of luck, and you have to deal with the cards you’ve been dealt. Even when people told me how strong I was, I didn’t think I was. I couldn’t have done it by myself—my husband was my angel during my whole journey. But fundamentally your mind is the most important weapon in your armoury, whatever illness you endure. There’s a saying, “Happiness isn’t the absence of problems, it’s your ability to deal with them,” and this is a mantra that I now live by.

What are the unique challenges faced by South Asians?

I think there are challenges for both undiagnosed and diagnosed women, the obvious one being the taboo around the topic. That’s not something I’ve experienced firsthand, but I’m fully aware of the barriers to talking about breasts within the traditional community. I’ve learnt more about this due to our agency’s role in the hugely important campaign, The Bread Exam, which aims to overcome the taboo and encourage self-examination.

For me personally, the biggest challenges were postdiagnosis. There's not enough that’s relatable for South Asian women going through their breast cancer journey. For example, I had a pretty severe skin reaction to the chemo—my skin was literally blistering and breaking all over body, it was excruciatingly painful to even walk. Initially no one knew how to deal with it and assumed it was eczema. But the following week my whole skin turned completely charcoal.

I was told it would go back to normal after chemo, but it never did. I did further research and forums said there may be a red/pink rash—I’ve never turned a shade of pink in my life! Eventually I paid for a skin peel to get my skin back to how it was before.

In your experience, can these lead to psychological challenges?

Definitely. Another example relates to beauty—one of the common ideals for South Asian women is to have this long flowing hair, and a feminine figure for a saree. Soon after I’d finished treatment, I had several wedding events to go to. Looking back now, I wasn’t in a great place but I felt I had to put on a brave face and go.

But no one prepares you for turning up to these events wearing a saree while being bald with one boob. I even tried to wear a wig, but finding a wig with our hair texture and colour is both very difficult and expensive—over £1000. It might not sound like a serious problem, but it can be incredibly hard and isolating to deal with on top of everything you’ve already been through.

#KnowYourNormal is a hashtag commonly used to raise cancer awareness and encourage people to notice early changes in their bodies. What does it mean to you?

Self-advocation. If you feel something isn’t right, trust your instincts and don’t stop until you have an answer. You know your body better than anyone. At the beginning of my journey I had to fight the whole healthcare system to make myself heard. I always say to people, “If in doubt, check it out.”

What can we as the healthcare industry – and specifically pharma companies – do to support the South Asian community around breast cancer?

We need to be aware of the health inequity that currently exists and engage the community to discover how that manifests itself. My own experiences got me thinking: how many other reactions are out there that would differ to how Caucasian patients react - and how often are these missed?  

But even more worrying are issues around early detection of breast cancer. The Swan study (2022) shows that Asian and Black women on average reach menopause way earlier than 50, but 50 is the national screening age for breast cancer due to it being more visible on scans postmenopause. It’s leading to breast cancer being missed and therefore diagnosed late, leading to a worse prognosis – as supported by the grim statistics. This is why we need to be more aware of the systemic barriers in place that pose a challenge for these women.

How can we help South Asian communities to be more breast/body aware? 

Get everybody to talk about it. This isn’t just about women, we need both men and women in the South Asian community to be body and breast aware. It might be deemed “inappropriate” to talk about checking your breasts at the dinner table, but we need to talk more openly about self-examination. It shouldn’t be any different to talking about going to your GP to get a blood pressure check to prevent cardiovascular issues (which we know is common in this community). So with the prevalence of breast cancer, why should this be any different?

What else do you think we can do as a community to raise awareness on breast cancer and empower woman?

Explore partnerships. What we lack is a platform and creating one from scratch will take time, so we need to think about what we do in the interim. It could be a charity partnership or celebrity/influencer support—but the more awareness we trigger, the more behaviour change we will see. Those behaviour changes could lead to additional research and ultimately policy changes for women experiencing breast cancer from marginalised communities. Then when people in those communities are diagnosed, they can access a relatable support group experiencing similar issues to help them on their journey.

What advice would you give a dear friend that was recently been diagnosed and their loved ones, eg, husband, daughter, son, etc (as cancer affects the whole family)?

Remember that every experience is different. It’s common to fixate on that one person you knew who's sadly lost their life due to cancer. Or to Google “cancer life expectancy,” which is probably the worst thing you can do as the data isn’t necessarily recent and could be based on people with high-grade, aggressive cancers. It’s easy to spiral from that.

In summary, although there are elements of cancer you cannot control, there is one thing you CAN control, and cancer can never take from you—and that is perspective.