'Probably benign' – How I almost didn’t get diagnosed with breast cancer

I had a strong family history of breast cancer

A year and a half ago I had my very first mammogram. I had just discovered the lump in my left breast and wanted it checked out straight away because of my strong family history of breast cancer (my maternal grandmother had the disease in her 30s). I was living in Buenos Aires at the time and was seen straight away at a private clinic.

Thanks to my health insurance, I had the tests and results all in the same day. Everything was fine. I didn’t have cancer, said the Argentine doctor. He did utter the words 'We’re 99% sure' and he said I could go for further tests in a few months' time if I so wished. But by no means did he lead me to believe that was a requirement.

I was given some printed reports and a short letter which I read and kept, always planning to follow up with that Argentine clinic when I was eventually diagnosed with breast cancer at Dublin’s St. Vincent’s hospital four months later.

I was told my tumour was bi-RADS 3

But cancer is time consuming and it took me a year after my diagnosis to retrieve that letter and really look into its meaning. The letter read:

‘The tests confirm the existence of a solid nodule of 12mm in diameter […] in the left breast. Absence of any other solid or cystic lesions. Category bi-RADS 3.’

There it was right at the end, that ‘Category bi-RADS 3.' What did it mean?

I Googled it. And there it was clear as day on the Internet of truth:

Bi-RADS 3 definition: Probably Benign.

There was no certainty in my diagnosis

Probably benign? Well what about the certainty? How could I have been sent away from hospital to get back to my normal life when the only thing I knew about the growing lump in my boob is that it was probably benign?

I was angry when I found this definition a year or so later. I felt the doctor in Argentina could have given me more clarity over the fact that there was no certainty in my diagnosis and that I definitely needed to get it checked out again a few months later. I felt I had been dismissed without a proper conclusion.

I didn't realise how important it was to have a follow-up check

So last week I finally wrote to them, not expecting much of a reply. What I got was a full, explanatory, semi-apologetic, completely personalised response within two days from the director of the hospital. He provided a full report of his investigation into the matter with my original doctor, who justified his decision and provided global medical studies to back it up.

The longer definition of bi-RADS 3 is:

‘Probably benign – Follow-up in a short time frame is suggested.

The findings in this category have a very good chance (greater than 98%) of being benign. The findings are not expected to change over time. But since it’s not proven benign it’s helpful to see if an area of concern does change over time.

Follow-up with repeat imaging is usually done in six months and regularly thereafter until the finding is known to be stable (usually at least two years). This approach helps avoid unnecessary biopsies but if the area does change over time it allows for early diagnosis.’

That latter paragraph about the recommendation to return within six months was never made clear to me. Of course there’s a chance it was lost in translation and I’m the first to admit I sometimes don’t listen to people, but I definitely heard something along the lines of 'You can get it checked out again if you want to but you don’t have to.' It was only by chance that I ended up back at the hospital in Dublin a few months later.

I hold no grudges against the Argentine doctor. He was a lovely, highly qualified man and was doing what his medical manual told him to do. I completely understand there’s a risk of over-testing with unnecessary biopsies and many young women have lumps and cysts that are purely hormonal and come to nothing. The first two doctors I saw in Dublin also almost dismissed me for that reason as well. And thanks to an early diagnosis and some incredible medical teams in Manchester and Dublin, I am perfectly well right now and awaiting the all-clear from my one-year MRI scan.

If you are unsure, ask for another opinion

But there is a moral to the story. We need to know our bodies and our family histories well enough to be able to know when something isn’t right. If we suspect anything untoward and are not satisfied with a doctor’s conclusion we have a right to go back and seek a second or third opinion.

This is not to suggest that all girls (or guys) with a lump or sore patch or any other unusual symptom in their breast should disbelieve their doctors and keep campaigning until they’ve had a core biopsy. But for those with strong family histories and lingering doubt it just helps to keep an eye out and make a point of regular trips to the doctor if any lump, bump or other abnormality persists.

Knowledge is power and knowing our own bodies and double-checking the facts is surely the first step towards preventing late diagnosis.