My name is Marieke and this is my story.
I am 43 years old. I have a great husband and 2 even greater daughters (age 8 and 10).
My story begins in 1970 when my father’s mother’s dies of breast cancer at age 44. I wasn’t even born then. My grandma’s daughter (and my father’s sister) got breast cancer twice and died age 43 in 1995. It was a couple of years after that (2001) that I dragged my sister to a specialist familiar cancer clinic in Amsterdam, the Netherlands to check things out. We are the eldest granddaughters of my grandmother and my aunt has two sons. According to the clinic’s findings we have a high risk of developing breast cancer and they recommended yearly screening, which we did. My dad tested negative to the BRCA mutations.
In the next years I moved to Australia (2007) and continued my screening here with a private breast surgeon Caroline Baker. She was the first to ask me if I ever thought of having a mastectomy, which I actually never had! In the Netherlands this certainly was never asked so I never gave it much thought. I told her this, we looked at the numbers and we agreed that at the time it wasn’t really necessary. I also visited Peter Mac, had some interviews there and they also recommended yearly screenings which I did through Caroline Baker. Unlike my sister, who always assumed everything was fine and never actually thought she would get sick, I always dreaded the mammograms and MRI’s and always had in mind: ‘this could be it’. But for me, it never did.
For all of us this changed in January 2015 when my sister got diagnosed with triple negative, breast cancer, age 45. She had to undergo lumpectomy (fortunately the tumor was only 11mm and they caught it really early), a heavy course of chemo and radiation. She was tested for BRCA mutations but again, tested negative. For me, this was the trigger I had been ‘waiting for’. I started investigating, asking questions, doing research and talking to my breast surgeon again. She now agreed that a preventative mastectomy would be a valuable option for me in risk reduction. I went to the Pink Hope conference, talked to Hamish Farrow about private vs public. I decided to go public and asked Caroline Baker to send my details through to the Austin Hospital and talked to Peter Mac to get me on the waiting list. This happened in March 2015. The waiting started.
During the following months I talked to more geneticists, plastic surgeons, breast surgeons, psychologists and breast nurses at the Austin Hospital and decided I wanted a preventative, nipple sparing mastectomy, with TUG reconstruction. Where I had my first interview with a breast surgeon planned for Peter Mac in October, I already had all the talks at the Austin and I received a surgery date of Nov 2nd at the Austin. So I cancelled Peter Mac.
Monday Nov 2nd. A big day. Especially for my family because they would need to entertain themselves while I was under for at least 8 hours! I wasn’t really nervous and knew I was doing the right thing, although I did ask for some reassurance from my husband on the way to the hospital.
Surgery took even more than 10 hours so I think my husband was secretly freaking out but all went well and I did talk to him on the phone late at night when they brought me to the ward (I remember vaguely). Waking up from surgery was weird, I had strange visions of me being the size of a Michelin doll and my hands the size of tables and I was afraid they didn’t fit anymore. It was the anesthetic talking but it was very weird. The next day was awful, I was nauseous, trembling, with a head filled with cotton balls, I had issues with my catheter and although my husband came to visit, I asked him not to bring the girls. They changed pain medicines a few times and figured out which ones were best for me. This helped and by Wednesday I felt much better, the catheter came out, the girls visited me and I got out of bed to go to the toilet. I initially had 6 drains (2 in each breast and 1 in each leg) but lost the 4 breast drains within the first 4 days.
After that every day I felt better. After a week I went home, with two drains still in my legs and a bag full of med’s. The Austin is a public hospital and they have a service called ‘Hospital in the Home’ which meant a nurse came to visit me every day to do my op’s, check and change dressings and change my drain bag. This continued until almost 6 weeks because I developed a ‘sinus hole’ in one leg. The last drain went out at 4.5 weeks but the sinus still needed care until my husband took over at 6 weeks (minus 1 day). Recovery at home went drastically better and better every day. The first two weeks I was in bed a lot but after that, my sister and mum arrived from overseas and I was out and about much more. Yes, sometimes I was tired but I felt and looked better and better. It was great for my mum and sister to come and help out, they walked the dogs, cleaned, cooked, dropped kids of at school and got groceries…all the things I wasn’t able to do in the first weeks. By the time they left I was, able to drive (sitting down still hurts but that is also getting better) and do all the things they have done for me so it was perfect timing. And it was great to have them around as well because obviously we don’t see each other often.
I am very happy with the results so far, the before/after pictures of my breasts are on the closed Before and After Photos Group and I actually think they look better than before. The scars on my leg are pretty long but I think in a years time I will be happy to walk around in a bikini because I know why I did this and I have nothing to be ashamed of. Actually I feel very proud! People ask me if I would do it again, and I would so do it 10x again. Yes the first days were hard but after that, it was a straight line upwards and I feel confident enough to accept a new job on January 4th, which will be exactly 9 weeks after surgery!
Pink Hope has been a great source of info and support along the way. I have met many great women, made new friends and it feels great to get but also give support.
Especially in the days before and after surgery because everything seems very scary and unreal. But I am happy, stronger, proud and positive about the future. I don’t have to go through what my sister has gone through and I know I will not have to tell my girls: ‘yes I knew we had a high risk a getting breast cancer but I decided not to do anything, and now I have cancer and might die’. That conversation will not take place. Yes, I might get another cancer but not this one, because I beat this one (I just did it before it ever started).