I was recently diagnosed with breast cancer, which is not common at my age (I am 27 years old). Coming to terms with this, I’ve realised that on the one hand, my young age means that I face unique challenges and disruptions to my life. But on the other, I bring important perspectives shaped by my own career at the intersection of technology and health/biology.

As a patient, I’ve encountered a healthcare system designed for older cancer patients, despite rising rates of early-onset cancer globally. As a researcher developing artificial intelligence & machine learning (AI/ML) and mathematical/computational technologies for health and biology applications, I can advocate for positive change driven by digital health and personalised medicine technologies.

I have an aggressive subtype of breast cancer called triple negative breast cancer (TNBC), which accounts for around 10–15% of breast cancers. TNBC does not express estrogen, progesterone or HER2 receptors that are commonly used to guide breast cancer treatment. My treatment is therefore very intense, and navigating an unexpected, new reality with this chronic illness is challenging in many ways.

While I’m incredibly fortunate to have high-quality medical care, I’ve found that the medical system and cancer support services are geared towards a much older demographic, and in many ways ill-equipped to support the needs of young adults like me. I’m undergoing cancer treatment in my home country, Australia, which is a huge change for me after almost five years of living and working in Europe and travelling the world. However, I later discovered through social media that I’m not alone in feeling this way — many young cancer patients have spoken about the disorientating impact of a cancer diagnosis at a period of life where careers, relationships, social connections and financial stability are being established.

My brutal TNBC diagnosis and treatment has also forced me to face problems I am familiar with from research and innovation settings in completely new ways, now from the patient perspective. Several years ago, I co-founded a digital health startup advocating for better representation of women’s health issues, and my PhD research centered on AI/ML for personalised medicine. This blog post explores my cancer diagnosis through this lens, connecting topics spanning women’s health challenges, digital health tech and personalised medicine.

In particular, there are two things I want to bring attention to:

1. The need for improved breast cancer screening for early detection across all age groups

2. The need for a more technologically integrated healthcare system that better supports the needs of young cancer patients

Gaps in breast cancer diagnosis and other women’s health challenges

Five years ago, my eagerness to explore the world and new ideas had spurred me to quit an AI tech consulting job in Sydney, Australia, and move to Tallinn, Estonia, known for its digital society and startup culture. I co-founded a startup that developed AI and digital health technologies for women’s health challenges, and through this experience learned a lot about the women’s health tech (sometimes called “femtech”) sector.

Women are actively seeking support for chronic conditions that don’t currently have adequate diagnostic or treatment solutions, like endometriosis and polycystic ovary syndrome (PCOS). However, innovation in healthcare is expensive and needs to produce not only clinical outcomes, but also economic outcomes (e.g., reduced costs of care) that benefit stakeholders other than the patient (e.g., public or private insurers) to be financially sustainable. Founders of women’s health startups face additional struggles in getting the financing they need (e.g., investor bias), and the underrepresentation of women’s health in medical research and lack of adequate data on various aspects of women’s health further stifles innovation in this space.

Ultimately women suffer the consequences of this: delays in medical innovation and technological advancements mean that many women’s health problems remain underdiagnosed, undertreated or completely unaddressed.

In Estonia, I realised that the women’s health issues I was working on related to a broader issue in health and medicine — solutions designed for generalised patient populations often fail to meet the needs of individual patients. This motivated me to dive deeper into the development of AI-based personalised medicine technologies, as a doctoral researcher in Helsinki, Finland.

Early detection and prevention of diseases is crucially important for improving health outcomes of many diseases like breast cancer, and more targeted approaches are needed. 

During my PhD I developed algorithms that aimed to address this by using a patient’s genetics and other health data (clinical records, prescriptions, lab tests, imaging, etc.) to predict the risk of various medical conditions. A key ingredient for the success of this research was utilising large-scale health and biological data sources available to researchers through genetic biobanks, population-scale health registers and electronic health record systems. 

However, as I alluded to earlier, actually getting these tools (genetic testing, AI-assisted diagnostics, etc.) into clinical settings requires navigating a whole other set of processes (clinical validation, reimbursement pathways, etc.), where innovators in the women’s health space in particular struggle to find adequate support.

This brings me back to my own women’s health story.

When life has other plans

It was around early 2024 when I grew concerned about my own health. I was experiencing excruciatingly painful menstrual periods and recurrent sinus infections. I eventually found the right allergy medications to control the sinus infections, but many medical visits later, I still didn’t have any answers about my period problem and it was getting significantly worse.

Several doctors advised me that I may have endometriosis — a medical condition affecting an estimated 10% of women of reproductive age. However, this was going to require a surgical procedure (laparoscopy) to diagnose (researchers are working on new diagnostic and treatment solutions, but endometriosis research is underfunded despite its high prevalence and socioeconomic impact). Insurers were reluctant to cover my procedure in either Australia or Finland (due to my expat situation), so I needed to wait quite a while for it. These types of medical challenges are unfortunately far from unique, with the average delay between the onset of symptoms and an endometriosis diagnosis being 6–8 years.

Fast forward to late 2024, and what I thought would be a brief family visit in Perth, Australia, escalated pretty quickly. Having recently returned to Australia from Europe, my partner and I were soon starting new jobs and moving to Melbourne, representing an exciting new stage in our lives and careers. 

I woke up one morning with period pain and an unusual change in my right breast — it felt hard and was larger compared to the left breast. I wondered if it could be related to the (still undiagnosed) period issue, but several days later I booked an appointment with my general practitioner (GP) to get it checked. 

What I thought would be a pretty mundane medical appointment became the week I would remember for making me feel like my reality had been shattered.

My GP explained that while it looked like mastitis (without abscess), he wanted me to immediately get a breast ultrasound scan. The ultrasound report noted signs of fluid accumulation and enlarged lymph nodes under the armpit that could be related to an infection, but the radiologist echoed my GP’s initial assessment and recommended further examination.

It’s still the same day and by the evening, I was at a hospital emergency department in Perth, as this was the quickest (i.e., less than several months wait) way to see a breast specialist. I was triaged as non-urgent and had to wait 8 hours (until 3am) to be seen by medical staff, where I was concerned to find other women around my age with similarly extreme wait times for issues like endometriosis pain.

The doctors who later saw me were perplexed by my case and said it could be mastitis (by this time I was being given antibiotics for this), but agreed it warranted further exploration. They admitted me to hospital for what’s called a triple test, which involves a physical examination, breast imaging with ultrasound and mammography, and biopsy.

The morning after that, I was taken to see a breast specialist who wanted to discuss the preliminary results with my family members present. The doctor explained to us that the biopsy had revealed I have cancer and that I needed to start chemotherapy. 

The need for improved breast cancer screening for early detection across all age groups

While I have the deepest respect for all the medical professionals who took my symptoms seriously and facilitated my swift diagnosis of breast cancer, I would later learn that younger women often present with symptomatic diagnosis (not found incidentally through a screening program), when the disease has advanced to a stage that is harder to treat and prognosis is poorer. 

As is clear from the total number of cases and the low age-specific rate in the charts below, breast cancer is not common among my age group (25–29 year olds), but it still happens. 

Breast cancer incidence by age group for Australia, 2023 (projected), showing that breast cancer is less common in younger adults. The top chart shows the number of females diagnosed and the bottom chart gives age-specific rates (per 100,000 females). Data reference: Australian Institute of Health and Welfare (AIHW) 2024 Cancer Data in Australia; Canberra: AIHW.

My diagnosis is an important reminder that women of all ages need to see their doctor about any unusual changes in their breasts. However, in my case, a combination of an aggressive breast cancer and dense breasts (which are both more common in younger women) meant that by the time a lump in my breast became palpable, the tumor was already very large and the cancer had locally advanced to the axillary lymph nodes (under the armpit). 

I was angry that my cancer had not been found earlier — not angry at any individual medical professional as I’d luckily encountered many good doctors who do the best they can with the tools they have, but angry at the lethargy of the healthcare system in adopting new technologies and screening practices. I had poured years of my life into my PhD research, working with world-leading health and genetics datasets and collaborators to develop machine learning models for early prediction of various health issues. And I had worked so hard to advocate for positive change to women’s health through my startup work. But still, the medical system had failed me and many other young women in a similar situation.

In Australia (at the time of writing this), women aged over 40 can have a free two-yearly mammogram for breast cancer screening, but only women aged 50–74 are actively invited for this. In 2024, the United States Preventive Services Task Force (USPST) recommended revising 50 down to 40, because more women under the age of 50 are getting breast cancer, but this still doesn’t help women under the age of 40. 

Cancer screening programs are designed to balance costs, harms and benefits for society. The current approaches may be effective for some patients, but cancer is a heterogeneous disease that affects different patient groups in different ways.

Why aren’t younger women offered screening? I was surprised to learn that one key reason for this is that higher density breast tissue common in younger women makes it more difficult for mammography to detect breast cancer. This means that not everyone can rely on mammography as an effective screening tool.

It is clear that more research is urgently needed on imaging tools for women with dense breasts (which is apparently nearly half of women!). From my own work I know that advances in areas like AI for radiology, genetic testing and digital health could help with this, and also be utilised to develop more targeted screening strategies that benefit women of all ages. For example, AI can be integrated into imaging workflows to increase accuracy and efficiency (and it’s good to see progress is being made on this for breast cancer screening in Australia). This in turn reduces costs and improves the effectiveness of screening programs, making it more feasible to screen a wider group of patients.

Genetic testing is also still underutilised in this area, which could help with targeted screening for younger patients (an approach to cancer screening that uses disease risk information to identify patients who could benefit from screening). My younger sister must face the newfound fact she may be at genetic risk of the same fate as me. She is a 22-year-old studying genetics and molecular biology, and therefore understands that the genetic testing currently offered to patients and their families is not as useful as it could be for answering these types of questions. The genetic testing I’ve been offered in Western Australia checks for a limited number of genes associated with high risk of breast cancer (e.g., BRCA1 and BRCA2), and doesn’t yet utilise more sophisticated genetics tools like polygenic risk scoring techniques that I spent part of my PhD working on (which consider the combined influence of multiple genes).

I hope that my experience highlights the need for more targeted approaches for breast cancer screening, that take into account the diverse needs of women across different age groups and other patient differences, in order to improve early detection rates and save lives.

A more technologically integrated healthcare system for young cancer patients

Another aspect that has really stood out to me during my cancer treatment is the need for a more tech-enabled healthcare ecosystem. Younger patients like me who grew up with technology as a natural part of their lives have different expectations around digital health solutions, such as telemedicine, mobile apps, wearable devices, and electronic health records (EHRs).

I’ve also had a bit of reverse culture shock coming back to Australia after living in Northern European countries like Estonia and Finland with more digitally advanced healthcare systems. For instance, these countries have nationwide EHR systems that are accessible by both patients and health professionals. I’m glad to see some improvements in the use of EHRs in Australia through the My Health Record system, but the integration is still pretty clunky because it is not mandatory for healthcare providers to use them. 

For example, chemo patients require regular blood tests during treatment, and I prefer to use pathology providers that share reports with My Health Record, so I can access my results through the “my health” app. It turns out that my hospital’s chemo unit uses some other system for receiving blood test results and several times they got lost in their system and needed to be faxed (?!) to the hospital, causing added administrative burden for my nurses and delays in my treatment. I also couldn’t just give my nurses the results from the “my health” app, as it’s designed so that the results can be viewed by health professionals as soon as they are uploaded to the EHR but patients are not allowed to view them for 7 days.

There’s also lots of new information to process as a cancer patient: navigating your treatment and many medical appointments, managing medications, and tracking side effects. I’ve been impressed with the multidisciplinary approach to cancer treatment in Australia — and have summarised this in the visualisation below to give an idea of what breast cancer treatment looks like for younger patients in Australia’s healthcare system. However, it’s easy to get lost in a sea of paperwork and the hospitals do most communications old-school pen-and-paper style (literally, appointment schedules scribbled on paper or sent in the mail, which become outdated very quickly due to changes in treatment plans). 

My experience with breast cancer treatment in Australia. This summarises all the services I was referred to within the first few weeks following my diagnosis: oncology, breast surgery, radiology, genetic testing, plastic surgery, fertility, pathology, mental health services, and nutrition counselling.

My new digital health app

With a lack of alternatives, my software engineer partner and I have been building our own app to help me navigate the complexities of cancer treatment. Although I’m excited about the potential benefits this app could bring to others with cancer, this app is currently only a personal tool for managing my own treatment, given the stringent regulatory requirements and intricacies involved in distributing digital health apps.

The app acts as a way for me to store data about various aspects of my health (symptom logs, vitals, wearable data, lab and imaging results) and interpret it in the context of my cancer treatment and side effects. One of the most exciting features is applying my expertise to effectively utilise the latest advancements in AI like large language models (LLMs) for this. For example, my doctors showed me how to use eviQ to download PDFs detailing my exact treatment protocols, which I’ve used to customise the app to interpret my data in a personalised way that takes into account the chemo/immunotherapy and other drugs I’m actually receiving and their known side effects. 

I will do a deep dive of the app in a dedicated post, but so far, I have been very impressed with how useful it is for helping me understand my treatment side effects in a fully personalised manner and communicate effectively with my medical professionals. 

A peak into my new AI health app for helping me navigate cancer treatment. It includes tools for storing data about various aspects of my health and interpreting it using AI tools that can be customised to understand my treatment and expected side effects.

By sharing my experience as both the patient and the builder of new technological solutions, I hope to encourage greater collaboration between the medical and tech communities, to accelerate the uptake of much-needed digital health solutions.

Challenges for young adults with cancer

Finally, aside from all the medical problems, young adults with cancer face acute challenges in managing their personal lives, careers, and finances. I was referred to some medical services because of my young age — for example, a fertility specialist to help me understand how cancer treatment affects my reproductive health. But I have noticed a big gap in support services for young adults with cancer — how to deal with the sudden disruption to your life and career. 

Young cancer patients are left to navigate these types of challenges on their own, without the benefit of established networks or community resources.

Technology is certainly not the solution to all these problems, but I’ve found it can help with finding the support needed to re-establish a life in a new reality. I am grateful to my colleagues around Australia and the world who have supported me in my decision of not wanting to take a career break during my treatment, and helped me still start my new job as a Research Fellow in Biological Data Science at the University of Melbourne. The urgent need for my treatment and preference to remain close to family has meant that I’ve unexpectedly found myself undergoing cancer treatment in a new city (Perth), where I don’t have any work or social ties. Technology has been crucial for keeping me connected to my research work (in Melbourne, Helsinki and wherever else my collaborators are). 

These types of disruptions to a young cancer patient’s life also make a cancer diagnosis very socially isolating for young adults and have implications for the lives of their family members. My doctors have advised me to avoid air travel for now due to the medical risks involved, so until my health improves my partner and I now need to try and establish new friendships in a new city, which I hope will be made easier with the help of digital platforms.

Conclusion and a call to action

In this post I share my own experiences of being diagnosed with breast cancer at a young age to increase awareness of challenges like limited early detection options available to women in younger age groups and different patient profiles, such as those with dense breasts. Based on my professional background as an AI researcher working in health/biology, I have suggested using cutting-edge technologies like AI for radiology, genetic testing, and digital health to address these challenges and develop more targeted screening programs. However, I have also stressed the need for better support systems for researchers and entrepreneurs working on women’s health initiatives, which will not only improve diagnosis and treatments for breast cancer, but also other chronic conditions such as endometriosis.

Furthermore, I have discussed the importance of supporting young adults with cancer through their journey. I have emphasised the significance of creating a tech-enabled healthcare ecosystem better suited to the needs of young adults with cancer. This includes more effectively utilising tools like electronic health records for information sharing, AI health apps for improving the patient experience, and digital platforms for mitigating the career and social isolation commonly experienced by young adults with cancer.

References and resources linked to in the text

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