My Story
Breast, Boobs, titties, we all know we have them. What we don’t all know is whether we have inherited a gene mutation, such as BRCA1 or BRCA2 that can increase the risk of developing breast cancer. Yet, even if you knew you carried this gene mutation, there is no prediction of when or if at all, cancer could develop in your breast(s).
When I was diagnosed with a non-invasive early stage breast cancer, Ductal Carcinoma In Situ (DCIS) that was found to have spread throughout 75% of my right breast, doctors were stumped. But why? These are experts, experts in their field with years beyond my lifetime worth of experience. Although breast cancer in young woman is rare, even scarcer was my case. A case of a 24-year-old young woman, strong family history of breast cancer, vast spread DCIS with no detection of cancerous cells spread beyond the milk ducts.
Confused? I was too. A diagnosis of DCIS means that cancerous cells are confined within the milk ducts of the breasts. It is not commonly considered breast cancer because it is non-invasive; the cells have not broken free from the confines of the ducts to enable them to spread throughout the breast or body. DCIS itself is not life threatening, however there is no test or historical research to predict how long it may take, if at all, before the confined cancerous cells break free and invade the breast(s) or body without detection.
Around 1,600 woman each year in Australia are diagnosed with DCIS and it accounts for up to one fifth of all breast cancers.
With 75% of my breast riddled with DCIS, the Expert’s expectation was that it must have invaded my breast or blood stream by now. They were simply stumped that it hadn’t but believed it had a high potential to do so if left untreated!
The best form of treatment for DCIS is surgery to remove it. Initially believing that only the lump (the size of a 20cent piece) that I previously detected and lead to the diagnoses, would be removed, I was shocked to learn that I was facing the hard fact of removing my entire right breast due to the wide spread DCIS.
I was shocked and shaken to say the least, but I thrive on information and gathered as much as I could to enable me to make a conscious and educated decision about what to do and how to deal with it. I managed and faced the music as best I could, with the occasional sob outbursts along the way whilst my partner Matt held my hand and told me we would get through it together.
My dad, a medical professional, did not take the news quite so methodically. He demanded that he speak to the surgeon to discuss whether he would suggest such an invasive procedure for his own daughter if she were in the same position. Of course the surgeon, Professor Owen Ung graciously took the phone call and placed dads mind at ease by suggesting he would do nothing other than recommend the same form of treatment should I have been his own daughter. Thank heavens, because Dad was a wreck.
I was diagnosed on 15th June 2011 and within six days, I was checked in to St. Andrew’s War Memorial Hospital in Brisbane (on my dads birthday of all things) and laying on a bed, wearing a pair of elegant white knee high pressure stockings, hair cap and front opening hospital gown, waiting to be rolled into the operating theater. Quite possibly one of the most terrifying times of my life.
One of my first memories after surgery was of me arguing with the nursing staff trying to wheel me into my private room. They simply could not understand that there was no way the bed trolley was going to fit through the door opening. I tried to tell them, time and time again. I even tried to help them out by putting my “good” arm out of the bed railing and hanging on the door frame, stopping the bed from rolling in so that it wouldn’t get stuck. After forcing my arm back into the bed and much to my amazement, the bed slot straight through the doorway. “Wow, they did it,” I thought.
Within minutes of being safely wheeled into my room, my parents, sister and partner were by my side and for the next five days they only left when they had to. I needed a lot of help to begin with, to walk (every movement shot pain through my chest for the first few days), shower, brush my hair, dress and get comfortable every night. My mum, a former Registered Nurse was by medical backbone and talked me through everything.
Seeing the wound for the first time will always stay with me, as I am sure it will with my mum and partner, who were the only others who I allowed to view it (other than doctors and nurses).
I had made a decision to undergo a mastectomy and re-construction immediately following. There are a lot of reconstruction options available these days, many leaving your breast feeling quite natural by using tummy or trap tissue and muscles, however these also have negatives that I simply was not ready for. I opted for a tissue expander. I also decided to keep my natural breast skin and nipple, allowing the end result to appear more natural. The tissue expander was placed under the pectoral muscle and slowly expanded by injecting saline solution into it over a period of 3 months to expand the peck muscle.
I underwent an additional surgery, six months after my mastectomy. This time to remove the tissue expander and place a silicon implant under the peck muscle as a form of protection to the implant. This time, the surgery was shorter and recovery quicker. I was discharged from hospital within 3 days.
I had many discussions with my surgeon, numerous oncologists and gynecologists regarding further treatment and prevention of cancer development with my left breast and ovaries, primarily due to the fact that I carry the BRAC2 gene which significantly increases my risk of breast and ovarian cancer with every year I age. After consultation amongst themselves, the medical team supporting me, suggest perhaps beginning the use of a hormone therapy based drug, Tamoxifen, although no consistent research exists to suggest Tamoxifen is effective in preventing breast cancer in patients presenting with DCIS, but in theory it should. As with everything, Tamoxifen has side effects. One being the possibility of early onset menopause that may be permanent, and as a 24 year old, with a partner and wishing to raise a family one day, this simply wasn’t an option.
The best recommendation my surgeon and oncologist collectively developed was to suggest that I remove my remaining breast and ovaries in the years coming to reduce or illuminate my chance of developing cancer in these areas. What a harsh recommendation, but at the time this was my best and preferred option, and besides I wouldn’t need to worry about it for a few years. But yet……
As I write this, I sit in a motel room two streets away from St. Andrews Hospital once again. Tomorrow morning I will be laying on another hospital bed, in those precious pressure stockings and hair net waiting to be rolled into theatre to remove my left breast as an elective procedure.
Many thoughts have gone through my mind in trying to make this decision. As a young woman who is yet to mother a child, one of my biggest desires in life was to breast feed and connect with my baby in this way. This surgery removes this potential, and even though I will no longer feel the touch of my partners hand on my breast, or have voluptuous breasts with cleavage or charm, not being able to nourish my child and feel their soft skin on my breasts, of all things, is by far the hardest and most emotionally challenging.
But I know I have made this decision for all the right reasons and I have the biggest and most loving support network of family and friends, without whom I wouldn’t have managed.
