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Saturday 1 April 2023 Dublin: 8°C
(Image via Flilckr/audreyjm529)
Column 'I lost my breast to cancer, but thankfully I didn't lose my life.'
Vivian Santiago was diagnosed with cancer at 26, now expecting her first child she tells women to be proactive about their health.

I never thought that I would be diagnosed  with breast cancer, especially not at the age of 26. Was I shocked when I was told? Yes and no. I am from New York originally but I have been living here in Ireland for a number of years. The county I lived in in New York is the highest county for breast cancer in the whole of America. So when I was first diagnosed I wasn’t totally in shock – but you always think, its never going to be me.

I had symptoms for a while before I went to get checked because as I said – I never thought it would be me.

The symptoms I had, which can be different for everyone, was that I had very sore breasts. But the pain was getting worse and worse and then blood started to leak from my nipple. Even when that happened, I let it be and didn’t go to the doctor for at least 3 months- looking back that was very stupid, but I wasn’t in a great place at the time.

‘I wasn’t expecting bad new as they had already told me I didn’t have breast cancer’

Eventually after my then father-in-law insisted that I go to the hospital, the doctors did a needle biopsy on me. The results came back that I didn’t have breast cancer and they said that I was fine. I was so relieved. They did a lumpectomy just to be safe and the doctors said I should be fine.

Following the removal of the lump I got a call from the hospital asking me to come in and discuss the results. I should have thought calling me in wasn’t good news but I wasn’t expecting bad new as they had already told me I didn’t have breast cancer. I didn’t even think my husband at the time, I have since divorced, should come in with me.

Looking back I should have known – they called me in last. I went in, not even thinking anything bad – and then they told me  – ‘look you actually do have cancer’ the doctors said.  I replied ‘no this can’t be, you told me three weeks ago that I was fine’.

The doctor explained that if you can imagine the lump is like an apple and the cancer is like the core. The needle only hit the left of the core where there is no cancer. A misleading diagnosis is not right for any woman – to be told I was OK and then that I wasn’t fine.

After they told me I was just in complete shock. I went from having a completely normal life to the thinking – ‘oh my god I could die’.
The shock of it makes you say some things you normally wouldn’t say so the first thing that I asked was ‘can I breast feed’, even though I was not even thinking about having children at that stage.

‘To deal with your mortality at any age is hard, and to have to deal with it so young is even harder’

Everyone I have talked to who has had breast cancer, seems to have that shock moment where they say something completely strange like ‘no i cant have breast cancer as I am going on holiday next week’. Its like your brain cant handle the news that you have just heard.

To deal with your mortality at any age is hard, and to have to deal with it so young is even harder. I kept thinking that I haven’t done all the things that I wanted to do in life.

After they told me I left the hospital. I had walked there as I wasn’t too far and I was just crying the entire way home. When I told husband and his family everyone was in shock but telling my parents was the toughest thing.

To have to tell them I was ill -  i was living in a foreign country and I am an only child – they were just so upset & worried. It was a very difficult call to make.

‘My attitude from then was I am going to survive this’

I was told the only way to get rid of the cancer was to get a mastectomy. So to be told first that your ill, you could die and you are going to lose your breast. It was all hard to digest it.

I called my gynaecologist in America who is also my next door neighbour in New York and I asked her a lot of questions about what was going to happen and what to expect. She told me that I was going to survive this and said if they wanted to take two breasts to let them take two breasts so long as your alive. My attitude from then was I am going to survive this – I was only 26, I wanted to live my life. I still had all these aspirations and dreams that I wanted to fulfil. I want to live that is all i wanted to do.

I didn’t focus on the fact that i could die, I focused on what I wanted to do with my life. I tried to find out as much information as possible, so that i could make the best decisions possible.  I had to focus on the positives – yes I did lose a breast but they offered reconstruction the same time they removed the breast. This was the first year that they were doing this. Previous to this  you had to wait for up to two years before reconstructive surgery could be done. All I wanted was to wake up with two breasts.

‘I am now engaged and expecting my first baby’

I thought to myself – I will lose a breast but thankfully I will receive a new breast. And psychologically, for myself,  it was great to be able to wake up with two breasts.

It is not always easy to focus on the positive. You do have your moments where you worry – what if they didn’t get it, what if it spreads and you start to worry about your whole body then. At the end of the day when surgery was over and i had gone through my recovery, I decided to do a kind of bucket list. I wrote down all the things I wanted to do. Since my recovery I have done a lot of the things I always wanted to like travel around the world. I am now engaged and expecting my first baby.

‘If we all waited that long to go get checked we could all be dead now’

Looking back now, at age 38, I would never leave it so long to get checked again. Unfortunately the media, the government and the doctors keep saying go get checked after the age of 35 – which upsets me as I had breast cancer at 26. I have talked to women who have had it before 30 and if we all waited that long to go get checked we could all be dead now.

Thank god I didn’t wait any longer. My message to others is that there is life after breast cancer. Women need to be proactive about their health – even if you don’t have symptoms like myself, even if you are not bleeding from the nipple and you are under 30, please go and get a mammogram. Early detection gives you the best possibility of survival. I unfortunately lost my breast to breast cancer, but thankfully I didn’t lose my life.

The Irish Cancer Society’s Survivorship Programme, sponsored by Irish skincare brand Elave, will donate €1 from selected Elave products from April to the end of May.

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