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June 15, 2014

Sarah, SA – I only heard the word carcinoma

I was a happy 33 year old, married with three small kids one, four. I had just finished my degree and was looking forward to the first summer in so long that I could spend with my children – where I wasn’t pregnant or breast feeding, before starting my new career.

That all changed when I woke at 3am and had the thought, “Oh I’ve got breast cancer”, moved my hand to my right breast and thought, “Oh and there it is”.

I made an appointment with my doctor the next day and I arrived with a list of things. I certainly wasn’t convinced of my premonition so I didn’t give off a concerned vibe and all I could tell him was that my breasts felt “different”. I will add that I’d had a mammogram and ultrasound only ten months earlier for an entirely unrelated problem that turned out to be nothing.

The doctor wasn’t overly concerned, but referred me for a mammogram and ultrasound. It took me a full five weeks to make that appointment. When I arrived for my scans I felt so stupid handing over the five week old referral complete with bits of apple, water stains and who knows what else attached to it.

Having had the same scans only months earlier I could only imagine them thinking, “Who is this young woman getting scans so often?” But no one batted an eye.

I was ushered in and had some very lovely women complete the scan and was expecting to be ushered away with a pat on the head and “Now, don’t you come bothering us again, we have people here with real problems”. However that didn’t happen.

The radiologist arrived and said she would take a biopsy. I explained that I had to get my son from kindy and that I could come back later.

When I returned for the second time, the mood had significantly shifted. What was to be a fine needle biopsy was now an ultrasound-guided core biopsy.

As I lay on the bed having an out-of-body experience while simultaneously having a casual conversation about children, the doctor went to work. The procedure didn’t really hurt but I was left sore and bruised for days.

Not to worry though, I had the torturous two day wait for results to take the edge off. On the Friday (the last day of school for the year and the beginning of out summer of fun) I phoned for my results.

My GP was away and the receptionist wasn’t going to hand over my results. After getting a bit pushy she asked another doctor at the clinic to review them. It was him who told me that I had ductal carcinoma in situ. I only heard the word carcinoma. I cried.

I cried quite a lot that day and was in disbelief as I sat in his office and he told me that I would have to wait three weeks to see anyone at the local hospital breast clinic, “It was Christmas” he said.

I spent the weekend in shock. The sun looked brighter, I loved my kids more, I cried a lot, I spent hours on Google and imagined my funeral quite a lot too. The three week wait was going to be torturous for me and my husband, who spent a fair bit of time crying and probably imagining having to bring up three children on his own too.

We decided to go private and pay for the surgery. I had decided that I wanted a bilateral mastectomy and my husband supported this. I thought that I was going to have to fight with the surgeon as the mood seemed to have shifted towards breast conserving surgery. But after outlining my reasons he was happy to go ahead.

The date was booked for the next Tuesday. I was to have a bilateral mastectomy and sentinel node biopsy. I was so scared arriving at the hospital in the morning. My surgery was in the afternoon and the identification of my sentinel node had to be done first.

When the time finally came to be wheeled to theatre, I lost it. I cried the whole way. My husband saw none of this and I am glad. In holding bay and after destroying a couple of tissues, I managed to pull myself together.

The surgeon and his team were fantastic and very reassuring. All that was left for me to do was go to sleep. I thanked the anaesthetist as the drugs started taking effect.

Waking in recovery I had some pain but it was okay, as I was expecting this. I had drains and couldn’t move my arms very high, but again it was ok and the rest of my physical recovery was uneventful.

I didn’t miss my breasts, I was glad that they were gone.

The final pathology results came back on the Friday. Mass forming ductal carcinoma in situ with excellent margins! What a relief. If you’re going to have breast cancer, you want this one. I don’t need chemo or radiation and after my mastectomies I had about a one percent chance of having any other problems.

I had family and friends all over the world lifting glasses and I couldn’t get the smile off my face. This didn’t last long though and not for the reason you probably think.

I still don’t miss my breasts, but cuddles with my small children are different. I spent months with a pillow as a barrier between them, and my sore and sensitive ribs and now they know to be gentle with me and I hate that.

I am now different, my innocence is gone and I fear for my future and that of my family. I will never again think of a disease and think, “Bah, I’m too young for that.”

The one percent chance of having further problems is too high and I still spend time thinking about my funeral, however not as much as I did.

I still cry sometimes when I feel that fear again and when I think about some of the amazing gestures of love and support that were given to me. I recognise that my fear is irrational, but fear usually is.