This is a powerful letter! Huge thanks to Janice for her courage in speaking up and reminding the government that more must be done to save lives and prevent suffering.  Her voice inspires action and yours can too. Every province needs to do better. Please read Janice’s story below and consider sharing your own with your health minister. Together, we cannot be ignored.

To The Honorable Sylvia Jones,

I applaud you, and the government, on your action to lower the age for self-referral for publicly funded mammograms (from 50 to 40) in the fall of 2024. However, I implore you to do more.

I was diagnosed with breast cancer two years ago (August 2023) – before this policy was put in place. Please read my story – and you will understand why I am writing to you today.

I am a 46-year-old mother of two, an Irish national, and business school professor.  A ‘newcomer’ to Canada, I have lived and worked in London, Ontario since July 2019.

In February of 2023, I started experiencing stabbing pains in my breast. A sudden spurt, like an electric shock, that made me double over in pain.  I was healthy, never smoked, ate a balanced diet and took regular exercise.  Importantly, I had (have) no family history of breast cancer – and like so many women, wore that fact like a magic cloak – thinking it protected me (somewhat) from cancer’s grip. I regularly checked my breasts for lumps, bumps or changes, but could find nothing like the pea-shaped lumps or nipple changes that are often indicated.  Pain is not a typical breast cancer symptom.

I raised the issue with my doctor in April 2023 and, after checking me over and asking me some routine questions, she didn’t think there was any cause for alarm. She sent me for an ultrasound, which confirmed, as she suspected, that I had multiple cysts in both my breasts. A common occurrence in women in their early 40s. Probably hormone related she told me. The presences of cysts could explain the shooting pains. Nothing to worry about. It was fine.

But it wasn’t.

The words of an elderly aunt, Anne, a nurse – from 15 years ago – rang in my ears. ‘Every woman over the age of 40 should have a mammogram’. She had said. ‘Not just those with family history of breast cancer. Not just those with symptoms or other risk factors. Every. Woman’.  Anne had worked assisting a breast cancer surgeon for most of her nursing career – she had seen ‘many women suffer’, and warned how ‘too many women still die from breast cancer – unnecessarily’.

So, I persisted, wanting to be sure.  Under the medical guidelines that prevailed at that time, as a 44-year-old woman with no typical breast cancer symptoms, I technically did not qualify. Screening started at 50. However, my doctor acquiesced and sent me for a mammogram.  In June, the clinic called me back again – they needed a re-do. Something wasn’t right.

In July, I was called in for a biopsy – this time at the breast cancer clinic at St Joe’s in London. They had detected a suspicious mass. A ‘mass’ that could not be felt by touch – even when we knew exactly where it was. A mass that was cleverly concealed among my ‘extremely dense’ breast tissue the radiologist told me. I didn’t even know breast density was a thing.

On returning from holiday with my family, on August 5^th, I got a phone-call. A medical secretary calling to schedule my surgery. I thought she had the wrong number. And then I realized – there was no mistake, just a mis-step.

That evening, my doctor called and apologized for not having reached me sooner – she confirmed the biopsy results were back and the news was not good. I had cancer and imminent treatment was on the cards. She stressed the positive – my cancer was a ‘good’ one (ER/PR+)

I didn’t even know there was different types of breast cancer.  I had a lot to learn.

Surgery followed – a lumpectomy and sentinel node biopsy – an operation that left me with some faint scarring, permanent swelling and a numb under arm for life. Six weeks later the pathology report came back. There was evidence that the cancer had spread to my lymph nodes. My tumor was 2cm in diameter, and classified as stage 2. It had not presented as a palpable lump – was not detectable by touch nor had I any other telltale symptoms of breast cancer.

I think this cancer was found ‘by accident’ I told my surgeon. Yes, he replied, looking me straight in the eye. I think you are right.

Because of the lymph node involvement, chemotherapy was strongly advised.  I pulled out of that semester’s teaching and prepared to work from home for the next few months. I didn’t know what lay ahead, but didn’t want to take sick leave. I didn’t feel ‘sick’.

I read as much as I could about breast cancer:  I researched breast cancer types and forms, recurrence rates and survival odds. Metastasis frequence and treatment options. Chemotherapy regimes and side effects. I joined online forums, a local cancer support organization and began reaching out to friends of friends who had been through it. I had conversations and text message exchanges with women whom I had never met but who instantly understood where I was at. There was a whole world out there that I was just beginning to discover – of breast cancer and treatments, of suffering and endurance, cancer winners and losers.  I was desperately scared.

My first chemotherapy session was October 23^rd – just two days before my oldest son’s 13^th birthday. My husband accompanied me to the hospital. I had a blood test and we then joined the waiting room. It was filled with older people, grey haired and sickly – they seemed to look at us with pity.

When my number was called, a nurse led me to a bed and hooked my veins up to a drip. I sat on the bed for four hours while toxic chemicals poured into my blood stream. An old lady volunteer wandered around distributing drinks and crackers. The nurses gave me ice cold mittens and strange frozen foot gloves to protect the nails on my hands and feet.

I wore blue socks with yellow lightning symbols that first day (and then for every session after that). They signaled the shock that my otherwise ‘healthy’ 44-year-old body was about to receive. I have not been able to wear the socks since.

Chemo lasted four months. One session every three weeks. In the days that followed each chemo session, I felt like a truck had run over my body. I experienced fatigue, a metallic taste in my mouth and found no pleasure in eating.

I lost my hair and suffered intense joint pain. My periods stopped. My skin and mouth dried up. I was low on energy and slept badly.

I took injections to ease the symptoms of bone pain. And those injections also had side effects.

I worried about the future.

I cried thinking that my boys might lose their mom. They were 9 and 13 – too young to live without me yet.

After chemo came radiation. A trip to the hospital every day for 2-3 weeks. Two black pin sized tattoos remain as artefacts of the treatment.  It was tiring but easy compared to what had gone before. After radiation, I began endocrine therapy – this involves taking a tablet (Tamoxifen) every day for at least the next 5 years – to help prevent recurrence. It too brings side effects.

I experienced 4 months of night sweats, intense hot flashes, mood swings, memory loss, poor sleep and repetitive eye troubles. It wasn’t always easy to concentrate on work but I persisted. My research was my refuge.

Two years on and my hair has begun to grow back. I have had gynecological issues (a direct result of the tamoxifen) but the daily side effects have now subsided.

I am back working as normal (although my concentration is not what it was) and am trying to focus on my family and my health as my priority these days.

I reflect on what breast cancer meant for me.

I lost time with my boys.

I feel like I have lost my care-free attitude to life.

Breast cancer made me self-absorbed – I was on survival mode for two years. There were decisions to be made (chemo or no chemo? radiation on lymph nodes or just the chest wall? Endocrine therapy or ovarian suppression?) and uncertainties to navigate (am I menopausal or are these just side effects of treatment? Will life ever be like it was before? What to eat/wear/consume now that I know I have had cancer and how prevalent environmental toxins are in our daily lives).

The cognitive load of cancer, and cancer survivorship is real.

It is fantastic that Ontario-based women can now directly refer themselves for mammograms through the Ontario Breast Screening Program (OBSP) without needing a doctor’s referral.

It is a real blessing that some women will have their breast cancer detected BEFORE it gets to stage 1 or 2 – and BEFORE they need harsher treatment (like chemotherapy).

It is great that women can now learn about their breast density and be mindful of their related risk level of breast cancer.

Yet why don’t women in their 40s know about this?

Why is there only a 14% uptake on screening in the 40-49 age group?

Why don’t women know that breast density is a bigger risk factor than family history of breast cancer?

Why don’t GPs raise these issues?

I am writing in the hope that your office may benefit from me sharing my experience of breast cancer. My story (for now) is a good one. But it is also a story that speaks to the importance of EARLY SCREENING and AWARENESS.

I was treated because a ‘precocious’ mammogram revealed something suspect.

We found my breast cancer ‘by accident’.

If I am writing to you today it is because I do not think we should be finding breast cancer by accident.

If we are going to make self-referral at 40 truly impactful by reducing suffering and saving lives the government needs to work to increase participation and engagement on this issue.

• All women should receive mammogram letter invitations on their 40th birthday.
• We need a purposeful public awareness campaign. How much is currently spent on raising money for breast cancer screening awareness?
• We need to educate doctors and work to dispel misinformation

The previous task force guidelines on screening still linger on (suggesting 50 is the right age). If I had waited that long, I would not be here to write this email!

Some doctors believe in the theoretical risk of ‘overdiagnosis’ and fear the anxiety that callbacks imply. But this anxiety does not outweigh the benefits of finding cancer early   – I know that from experience, and because I live with the anxiety of recurrence.

But I prefer that to not living at all.

Thank you for reading to the end of this email.

Please take my words and use them as fuel for action.

Bien a vous,

Janice Byrne