Ingrid’s Double Mastectomy and Breast Reconstruction – Being BRCA2 Positive

Double Mastectomy

On the 30th of March 2016 I had a meeting with a genetics counsellor at the Gold Coast University Hospital regarding being tested for the BRCA2 (breast cancer) gene. I have a strong family history.

It took 6 weeks for my blood test results to come back and unfortunately, I was also BRCA2 positive.

In the weeks leading up to receiving my results, I made sure I was fully covered for private health just so I could receive the best care available, as I was unsure about the future of my health – great move!

Women with a BRCA2 mutation are at a high risk of developing breast cancer and ovarian cancer. The older you are, the greater the risk.

I was visiting the Wesley Breast Clinic twice a year for either an ultrasound or an MRI (these would alternate between appointments) which was quite costly.

My breast surgeon, Dr Stringer, decided it would be a beneficial move to have a double mastectomy. When we made the decision to go ahead with the surgery, I was newly engaged to Mike. We had to consider that a wedding and then children was our next step. As my mother was first diagnosed with breast cancer in her 30’s, I was always scared to have my own children and then be diagnosed with breast cancer. The reduced odds of developing cancer were too good to resist. I made the decision in November 2017 to go ahead with the surgery.

Family History:

– My mother (Ann) was diagnosed with breast cancer at the age of 36 years and died at the age of 49 years (I was 24 years old). She was BRCA2 positive.

– My mother’s sister (Aunty Jenny) was diagnosed with breast cancer at the age of 52 years and died at the age of 59 years (whilst I was in hospital). She was BRCA2 positive. She has two children, Chelsea and Ryan. Ryan is BRCA2 positive, Chelsea isn’t.

– My mother’s father (Robert) died from stomach cancer. He was an orphan due to both of his parents passing in their early 30’s from cancer.

– My father’s mother (Lorraine) died from breast cancer – spindle cell sarcoma (which is commonly found in children and rare in adults) at the age of 79 years.

I was in year 5 when my mother was first diagnosed with breast cancer. My grandma (Lorraine) was also diagnosed with a rare form of breast cancer and this news prompted my mum to check her own breasts. She found a lump and began tests/surgery/treatment the following week.

I will never forget that day, coming home from school to be greeted by mum and dad. They sat my brother (Simon) and I on the couch and told us the news. At the time I was too young to grasp the full effects of what cancer can bring to a family.

Mum went through so many surgeries/treatments (double mastectomy, hysterectomy, lymph node removal, chemo, radiation, just to name a few – but she never had any reconstructive surgery) over the years, it was a cruel life, but she always had a smile on her face and tackled day to day things with a positive attitude. She was such a strong person and my biggest fear was that I wasn’t as strong as her.

I had a Bilateral Nipple Sparing Double Mastectomy and tissue expanders inserted (for reconstruction later) at the Wesley Hospital in Brisbane with Dr Matthew Peters from Valley Plastic Surgery.

The doctors removed all my breast tissue and inserted tissue expanders under my peck muscles which was supported by Flex HD internal skin tissue/graphs. Each tissue expander had a carbon dioxide cylinder (they felt like an empty coke can when squeezing). Once healed (4 weeks post-surgery) I connected to each cylinder via WIFI (had these groovy white/pink wands) to release 10ml of gas each day. This inflated the tissue expander and essentially stretched my muscles, so the final reconstructive implant could be inserted underneath my peck muscles.

My initial surgery on the 9th of February 2018 began at 7am and went for just over 4 hours. The surgery ran very smoothly and there were no complications.

Double Mastectomy
Staying postitive was easier with the help of friends and family.

I remember waking up in recovery and instantly started crying, not from the pain but from being overwhelmed and probably (mostly) the morphine.

In the beginning, getting out of bed and venturing to the toilet was quite painful. I remember having a little tantrum on the second day, as my chest was feeling tight and very painful, so the doctors decided to hook me up to a self-administering fentanyl pump. This made my time a lot more comfortable.

I had four drains (two each boob) which I had to monitor and record the fluid lose each day. The lovely ladies at the Wesley gave me two handmade tote bags, so I could carry my drains.

I remember feeling dizzy on the second or third day post-surgery which was from low blood pressure. I called the nurses in right as I was about to faint. They stripped my clothes off right in front of my dad – how embarrassing. Looking back at it now I giggle to myself.

Dr Peters discharged me from the Wesley hospital on the 12th of February where I went back to my mothers-in-law’s house for a few nights before heading home to the Gold Coast, just so I could be closely monitored. After a few days I decided to head back home to the Gold Coast, so I could finally sleep in my own bed. Sleep was very difficult, and you could only sleep on your back. It was far too painful to sleep on my sides and impossible to sleep on my stomach.

After returning home for a few days and Mike went back to work, I started to struggle with my emotions. It was near-impossible for me to shower myself, change my clothes and do normal day-to-day things without feeling discomfort and pain. In a way it felt like my independence had been stripped from me.

One day I was feeling extremely sore in my left boob and I noticed it had started going red. I kept monitoring my body temp day-to-day after the surgery and on this particular day I had a high temperature. I called Dr Peter’s rooms and explained my situation to the nurse. She asked me to send/email a photo of the inflamed left boob so Dr Peters could take a look. Within 5 mins of hitting the send button, they called and asked me to come in that afternoon. Mike was already working in Brisbane that day (I was at home on the GC), so I asked my best friend Nova to drive me to Dr Peters’ suites, as I was unable to drive at the time (couldn’t drive for 4 weeks post-surgery). I remember Nova commenting on how pale I looked in the face.

Mike met us in the waiting room at Dr Peters’ suites where I had a 5-minute consultation with Dr Peters. That’s all it took for him to decide to re-admit me back to the hospital. This time I went to North West Private Hospital on Brisbane’s northside (a long way from home). Dr Peters admitted me to this particular hospital as he had a surgery list (theatres booked) for later in the week, just in case I had to get my tissue expanders removed – the worst-case scenario.

They started me on vancomycin IV antibiotics (kills bacteria) right away. I had to get numerous blood tests (morning and night) to make sure I had a therapeutical level of vancomycin in my blood levels. I got my left boob drained under ultrasound twice over a 4-day period. Each drainage removed approx. 80-100ml of fluid, which took the pressure off my wounds and made the redness go down. Dr Peters believed I had a reaction to the chemicals used in the Flex HD skin graph – Red Breast Syndrome. Once I had finished my course of IV antibiotics, my drains were removed and I was feeling much better, I was discharged from the hospital. I had one more drainage after being discharged at a private pathology suite – 3 drainages in total. I also saw Dr Peters weekly so he could monitor me closely.

On the 6/6/2018 I had my final surgery at Brisbane Private Hospital – tissue expanders removed and implants inserted. My surgery was late in the afternoon. This surgery was by far easier then the initial surgery. I had very little pain and discomfort. I stayed in hospital overnight and was discharged the following morning. I was so excited to see my new flawless boobs for the first time, as the ‘coke cans’ (tissue expanders) were out of shape and looked dented.

I had my hens party just two weeks post reconstructive surgery, which shows my recovery time was super quick.

The initial operation was on a Friday morning at 7 am, so I finished work on the Thursday, and we stayed at my mother-in-law’s that night, as she lived close to the Wesley Hospital. I requested a pork roast with lots of crackling for dinner – my favourite. After dinner, I had to wash my entire body in this pink liquid soap (which pre-admissions gave me) and my hair – twice and by using two separate towels. After I was squeaky clean, I jumped into bed and had an extremely restless night. I felt like I only slept for an hour or so due to pre-surgery jitters.

On the day, Mike drove me to hospital at around 6am, by this stage I was really nervous. Not nervous about the pain or surgery itself, just nervous because I had no idea what I was going to look like at the end of the day. Girls care about their appearance – I certainly did/do.

Prior to surgery, I had a mini consultation (interview) with a nurse who asked me to repeat in my own words what procedure I was having on the day – standard procedure. She then handed me my operation gown, and this is when I had to say my goodbyes to Mike. I think I was holding back tears. After parting with Mike and I was changed the nurses sat me in a warm recliner chair (it was so comfy) to settle my nerves. I was then transferred to a bed where the nurses hooked my IV up and I met with my anaesthetist. I was wheeled into the theatre and asked to count to 10. I don’t think I made it past 5 and I was out.

I remember asking Mike (my husband) to take a photo of me an hour or so after returning to the ward. I wanted to upload it to my socials to show my friends/family I had survived one of the toughest days of my life and I was doing ok. In the photo (attached) you can see I had my thumbs up whilst connected to many monitors. The image was captioned “What doesn’t kill you, only makes you stronger”. I got an overwhelming response from my friends – In a way I just I just wanted reassurance I had done the right thing.

I’m glad I decided to have a double mastectomy at such as early age. Being young and fit makes the recovery time much quicker. I’m happy I can now put that worry of developing breast cancer in the past and move on. On the flip side I did end up with some beautiful perky boobs, which I love.

My advice for anyone looking at doing something similar is there is a healing process and a down period to all surgeries. At the time of any surgery, it’s not easy. Your life goes on hold for days/weeks while you heal. Just be 100% sure in what procedure you are having and be prepared for the downtime. Make sure you get help from family and friends, as you’ll need it.

I also made sure I was fully covered for private health just so I could receive the best care available, as I was unsure about the future of my health – great move!

Double Mastectomy
Dr Matthew Peters from Valley Plastic Surgery

Both of my doctors (Dr Stringer and Dr Peters) were very thorough with information, which is probably a result of many consultations leading up to the surgery and even more, consultations post-surgery.

I did google both doctors prior to our initial consultation and read only positive reviews for both.

I was recommended by a family member (who is in the medical industry) to visit Dr Kate Stringer at the Wesley hospital. She was very kind, caring and helpful. Dr Stringer arranged for me to meet with Dr Peters, as they work alongside each other in these particular surgeries.

I would highly recommend both doctors/clinics. They both presented very well and visited me around the clock whilst I was in the hospital. The dream team!

Their nurses/staff members were always nice and very helpful in changing my dressing etc.

I think I coped well (physically and emotionally) as I watched my mother go through similar surgeries. I did hit an all-time low when I had returned home, Mike went back at work and I started to develop Red Breast Syndrome. All of my independence had been taken from me. I remember just crying because it was too difficult for me to shower myself and change my clothes, especially with four drains. I would sit in my PJ’s all day waiting for Mike to get home, so I finally shower and change.

Another big low was being readmitted back to the hospital, I mean who likes being in the hospital (especially one which is like 2 hours from home).

While I was in hospital receiving treatment for the Red Breast Syndrome my Aunty Jenny passed away from breast cancer. She lived in South Australia and I was too sick to travel/fly, so I missed out on the funeral. This really hit home and made me realise I made the right decision – removing my boobs.

I believe the recovery is always the most challenging part of any surgery. It’s all good having nurses dote over you in the hospital where you barely lift a finger, but once you are discharged and your home with no real help is where I found it hard.

I would recommend having friends/family visiting to lift your spirits because sometimes you just want to cry and vent to someone. Recovery can be lonely.

When packing your hospital bag, I would also recommend packing PJ’s that button down the front, as the nurses are always checking your wounds/dressings – easy access.

I had two post-operative support bras (costing around $100 each) which I had to wear after my reconstructive surgery – Can’t remember the brand name.

I feel great now and I’m very proud of what I have achieved thus far. Planning for the future is an important thing – which I will be around for!

I love sharing my story with friends, family and strangers in hope that it helps others, even if that’s just one person – it’s worth it.

Someone once said to me (just after my initial surgery), you can either dig your head into the sand and just move on with life or you can speak up, be proud and have hope that someone will benefit from your words/experiences. I have definitely honoured this statement and it will stick with me for my whole life.

My family and friends were extremely supportive throughout and after my surgeries. Dad lives in Melbourne and he made the effort to take time off work and fly up for my initial surgery. My brother also visited from Melbourne once I had returned home and Mike went back to work.

My husband Mike was amazing – as always!! He has always been very supportive (even with the little things like washing my hair, changing my clothes, to being at every single appointment) I’m a lucky girl to have him by my side.

My close friends organised a surprise lunch one weekend leading up to my surgery – I cried! Having that much support really made a difference.

In the hospital, I was overwhelmed with lots of flowers and gifts. Some of my girlfriends travelled up from the Gold Coast to visit me just after my initial surgery. I remember they braided my hair as I couldn’t move me arms very much. It’s the little things that count.

I have one older brother (Simon) who unfortunately is also BRCA2 positive. Meaning both children are BRCA2 positive.

Currently I am 32 weeks pregnant to our first baby (girl) due on the 19/12/19 – very excited! Having this surgery reassures me I will be around to watch her grow old. As I had all of my breast tissue removed, I am unable to breastfeed but I think this is overweighed by the fact I will watch her and my future children grow old. Something I wish my mum could have done with me.

I still need to have a hysterectomy once I’m done having kids, as the BRCA2 gene can cause ovarian cancer. But this is another hurdle to overcome at a later date. For now, I’m focusing on growing my family and living my best life.

Editors Note: If you’d like more information on Dr Matthew Peters you can visit his website here.