Karin taking Anna for a paddle on Lake Pupuke
I knew Karin from around Auckland as one of the Breast Cancer ladies who spoke at events and always looked energetic and fabulous. I spoke to her on occasion about her battle with Breast Cancer and in 2012 she spoke at a Pink Ribbon breast cancer event that I organized with my good friend Helena McAlpine (god rest her naughty soul!)
I always wondered how Karin managed to cope with 3 small girls and such a busy life!
It wasn’t until about 3 years ago, after finding out that I had BRCA2, that I also found out Karin was a BRCA1 carrier. From that day I called her my BRCA sister, and over the past few years we have shared many highs and lows together. We have supported each other through operations and the many variables that come with it… helping with children, talking to each other through upset phone calls, infections and all the complicated things that come along with solo parents going through breast surgeries.
When I asked Karin to sit down and tell me her story, I was pretty sure I knew it all. But it’s funny how you think you know someone so well, but then you realise there was so much you didn’t know. That’s how I felt when when Karin shared her incredible story with me.
Now I share it with you…
Karin with her three daughters, Pania, Mokoia and Huia
When did you first find out you had breast cancer?
My mother died in the year 1998 of a heart attack, which was a really hard time for me. Losing a parent is so devastating, and I was still in mourning her death when I found a lump in my breast. I will never forget, I was at the beach when I felt the lump. I was lucky that I could actually see the bump growing out of my breast, so I knew something was wrong. In 1999 there wasn’t much awareness of breast cancer, I had to really search on the internet really hard to find any information at all. All I could find was a story about twins in America who were also in their 20’s who had breast cancer.
It was 1999, I was 26 and living in Tel Aviv when it was confirmed I had cancer. I went on to have a partial mastectomy, then radiotherapy and chemotherapy in 2000. I tried to go to a support group in Israel but it was all much older women, so I knew that this kind of cancer was not normal for someone my age.
What happened following your treatment?
I’m not one to sit around in stillness, so 2 weeks after I finished my chemo I went for a job interview wearing a wig. When I went back for the recall interview I forgot to wear the same wig and they noticed my short hair. I told them I was going for a ‘racy’ hairdo and decided to go short. I landed the job at Ogilvy’s in Israel as a media buyer and after a few years in that role I moved to Australia in 2005 to study my Masters in Marketing at University.
It was two years later when I had my first daughter Huia in Australia, and then soon after moved to New Zealand. I had my second daughter in 2010 and finally my third daughter Pania in 2015.
So when did you find out you had breast cancer again?
I managed to have three beautiful girls and I was so happy to be in remission. I believed the breast cancer had been an entirely random unfortunate thing.
4 years ago at age 40 I was doing breast check ups North Shore Hospital. They sent me home saying I had some benign nodules. But soon after in 2013 I was told there were 10 tumors inside me. The doctor called and wanted me to come in, and at that moment that’s when I knew I had cancer again. I made her tell me the details on the phone and I felt like the whole room was falling away around me. I was home alone with the girls, so I rang my girlfriends to come and help me. I was just too overwhelmed to cope. I remember my adrenaline kicking in and immediately starting to sort everything out.
At this point I knew what I was in for which is partly what scared me. I remember at the time I was so frustrated to be going through it all again. I had been doing everything right. I was living such a healthy life and exercising! I was paddle-boarding and having a great life as a mum with three very small girls.
Telling my partner at the time was hard. He was in Canada and I had to skype him and tell him. I said ‘it’s back’ and we both knew what we were dealing with.
I had to make the decision whether to remove one or both breasts. Pania was still a baby in nappies and I knew that my three girls needed me alive, so I chose to remove both breasts. And following that was chemo, radiation and all the hard months that followed.
The hardest thing was continuing as a mum and looking after the girls. I was often completely on my own with them and trying to deal with all the side effects at the same time. Thankfully through the paddle boarding community I created, I managed to survive this with help from them and the community. I opened up my story to people and I learned very quickly to accept help – and boy did I need it!
This is a big part of the reason now that I give back with Paddle For Hope, the charity I set up to help women recovering from breast cancer.
When did you find out you had BRCA?
It wasn’t until 2014 I found out I had BRCA1. I’m Jewish Ashkenazi (an East European Jew) and I had only recently found out what BRCA was. At that point I was having my ovaries removed, and the doctor spoke to me about BRCA and doing the test. I was a two time breast cancer patient and I was jewish, so it seemed possible I would have the gene.
I was so happy when I found out I was BRCA positive. I was excited almost. It was the moment where I could stop blaming myself for getting cancer. It wasn’t anything I’d done wrong or could have helped. It’s a mutant gene… my genetics.
There is so much more we know now about BRCA in 2018. Every day I see my daughters breasts growing and I feel the fear growing inside me. But at least they will have the option of testing at age 18, which is a blessing. I know they have a 50% chance. I make sure they are educated about BRCA. I don’t talk to them about it in depth but they are aware of my genetics and illness, and when they are 18 I will have an in depth discussion with them. It is my hope that my kids will be aware of the their risks and live a balanced healthy life.
How do you feel about the way BRCA is being dealt with in NZ?
While there is more awareness about BRCA and inherited breast cancers. Unfortunately people are still dying from BRCA cancer diseases. Testing is the first step, and I hope there will be advancements in both testing and treatment for BRCA in the near future. At the moment it does not seem like enough people are being tested.
It’s really frustrating that it’s such a simple test to do and I think everyone should be tested if they want to be tested. I didn’t have family history. So why should people have to prove they have family history to get this test? And BRCA cancers come on particularly early, so surely more testing is needed?
There are cases where people’s families are dead and they can’t prove the gene is in their family. Those people need to be tested but they often can’t – how is that fair? I want people to be knowledgeable about their chances to have BRCA and to understand. It’s better to have no regrets, than be sitting on your death bed and saying goodbye to your family, wishing you’d had the test. What we mainly see in the media are the survival stories and people who’ve found the gene. But I’ve buried some good friends over the years and these deaths are a sad reality in my world.
What are the next steps for your health journey?
Well after a total of 8 operations on my breasts and ovaries I’ve had significant issues with blood supply and skin being so thin. Mostly as a result of the radiotherapy from 1999. I’ve also had capsular contractions. So very soon I’m having an operation to reconstruct my right breast using fat and skin from my stomach. A few months after that I will have another operation, my left breast will have the expander removed and an implant put in.
How do you feel about BRCA and your health now?
I am lucky that I was able to be a mum that could breast feed all her babies. Had I known I had the BRCA gene 10 years ago, it might have saved me getting my hormonal breast cancer, but the reality is that I probably would have had my ovaries removed which means I wouldn’t have these beautiful daughters.
I exercise a lot to keep my bones healthy, I try to stay strong. I’m still on Exomestin to reduce estrogen production. In all honesty, right now my breasts are really screwed up, and I’ve been through cancer twice, but at the end of the day I have my three girls and I am alive.
Any final words?
When you have an accident in NZ you have ACC that provides recovery support, financial support, help getting your kids to school and home help. It is my hope to have this available for breast cancer recovery one day, in particular for solo parents.
Part of my Paddle for Hope is called ‘Paddle on’ rehabilitation for people who have had breast cancer. It keeps them moving and strengthens their chest once they are ready for it. I invite women who would like support post breast surgery to get in touch if they want to be part of the community.
Karin & Victoria at their big annual Paddle For Hope event
Bridgette Jackson, Anna Jobsz & Karin Horen – comforting each other through a challenging time. Anna & Karin post surgery and Bridgette coping through her daughter’s heart transplant surgery #girlpower
Rebecca Freeman-Greene, Karin Horen & Anna Jobsz. Rebecca was about to undergo her double mastectomy after finding out she had breast cancer.
About PADDLE FOR HOPE:
Paddle for Hope is a vehicle for fundraising for the ‘Paddle On’ rehibilitation programme. They use physiotherapists together with us ( starboard riders ) to help on the water and give people a better quality of life after cancer. Victoria and Karin have been fundraising for 7 years. The program is free around NZ.