Ann-Louise February Member of the Month

Three years ago, I went to the doctor with two lumps in one of my breasts. I didn’t tell anyone in my family as the professionals spent the next 5 weeks testing and coming to the conclusion that they were fibroadenomias. “They’re just breast mice, nothing to worry about!” What an incredible relief! At that time my father was having his 5^th surgery that year for prostate cancer as there had been major complications caused by previous surgery and I had greatly feared what lay ahead if I too had a cancer situation. Dad and I ran the farm together, I taught part-time, was building a house and my five children were aged 5 to 12. There was NO way I had time to deal with cancer.

I looked at the specialist and said, “Are you sure? My dad’s oldest sister was diagnosed with breast cancer at 36 and died from cancer in the other breast 20 years later and my sister always has cysts and lumpy boobs. Are you sure?” “Yes, we’ll keep an eye on them but it’s all good. No, one aunt doesn’t mean you need to be really concerned and lots of women have lumpy boobs. Just have a mammogram every 2 years to be safe.”

So, apart from remembering very infrequently to do a manual check, cancer was not essentially part of MY life. My dad continued to require treatment and life was normal . . . then I had a call from my sister.

As the latest “cyst” in her breast was now really big, sore and red the doctors had suggested she see a specialist to stay on top of the situation. She had managed to get a cancellation appointment for that morning so was taking the ultrasounds in that were taken a couple of weeks beforehand to show them and see what they could do/recommend to ease her discomfort. That appointment and the phone call I got that afternoon changed our lives – forever. The “cyst” was an 8cm cancer! That’s the size of an orange! She had a Stage 2 cancer. She was a week away from her 40^th birthday.

Over the next 5 roller-coaster weeks after exhaustive and numerous tests her cancer progressed from Stage 2 to Triple Negative, Stage 4, Liver metastasized breast cancer – inoperable due to its size. The mets grew during the first 2 chemo cycles so they ramped up the dosage, then moved into radiotherapy when the side effects became too severe. This too had horrendous side effects but Jenni was determined to do all possible to be there for her 2 boys, aged 7 and 12. Throughout all this time her family, her church and God stood with her in support.

During this time there were infrequent communications with extended family. My dad’s family had very little contact with each other – he was the baby and the same age as a lot of his nephews and nieces, another one of the children really despite being over 60. His remaining sister rang one day, about a month into Jenni’s treatment, and made a throw off comment that “Well, as you know, Mum’s three sisters died of breast cancer so my girls have always been careful.” . . . No. we didn’t know, we had NO IDEA. This had all happened when Dad was a baby and in those days you did not talk of breasts to anyone, let alone the youngest. Jenni and I started digging and discovered that there was a link between some breast cancers and prostate cancer. We started to look into whether or not there could possibly be a genetic link. My three great aunts were all diagnosed at an early age and died of their cancers, as did my aunt. Over the past year we have discovered that of my grandparents’ 5 children, only 1 has not had a case of prostate/breast cancer in themselves, their children or their grandchildren. No-one had any idea this was the case.

I went back to my specialist – yes I now have a significant family history and I am at a much greater risk. Have a mammogram now. Then, an ultrasound. No, sorry - not clear enough. Probably won’t be ‘til menopause. Off to Peter Mac in Melbourne (9+ hrs away) for an MRI – gold standard diagnostic tool. We’ll just give you one of these every year. Anything happens – we’ll catch it early. Oh, seeing as how you had an allergic reaction to the dye used in the MRI we can’t offer that to you anymore. You’ll just have to rely on manual examination and tests that we know don’t work!!! You have got to be kidding.

At this stage Jenni and I talked at length about gene testing and prophylactic surgery which we thought was rather hilarious – she had cancer yet had to keep her boobs, I didn’t have it but was determined that they were coming off. As far as I was concerned even a Stage 1 diagnosis was too hard for our family. I wanted there to be no chance. Jenni had bloods taken on July 1^st, 2009 and we started the testing process.

After spending a wonderful week on the farm, where Jenni spent most of her time in and out of “sleep”, she headed back to Melbourne to start more chemo, leaving her boys with us for a week. We had no idea she was suffering end-stage liver failure. Her strength, deep faith and reliance on God during this time was astounding. As she was about to leave I took our first ever family photo. Not because I thought it was my last chance, we were just all there.

They were taking two days to drive home. At 8pm on the second day we received a phone call to say she’d gone into a coma on the drive home and could we please bring the boys home tomorrow. No, don’t leave now, drive more safely in daylight. At 11pm, another call. Please leave now, she may die tomorrow. We woke up all the children and drove them to my parent’s house. We got Jenni’s boys in the car, kissed ours and left.

We drove all night and at around 6am, 10 mths after diagnosis, 4 days after her youngest turned 8 and less than a week before her oldest turned 13, my sister Jenni died. I think that one of the hardest things I’ve ever had to do was drive in the car for 2 more hrs, knowing my little sister was dead and not grieving or showing anything in order for my brother-in-law to be able to tell his children that their mother was gone. On hearing the news, my grandmother had a severe heart attack and she died the next day.

4 mths after Jenni died, her blood work returned. Negative for BRCA 1 and 2 defects. Has that changed my decision? Decidedly NOT. The genetic counsellor’s comment was “If only we could get you past 50”. That’s a long 7 years away and there’s far too much here to risk just for the sake of keeping my boobs. I am much more than my boobs. I am a daughter, a granddaughter, a wife, a mother, an aunt, a sister-in-law, a cousin, a niece, a friend, an educator, a farmer and SO many other things. Part of the reason my family has found itself in this sometimes despairing and heart wrenching place is because people didn’t talk. Nobody knew we had to be careful. I have so many male cousins entering the age where they need to be vigilant and get regular checks for prostate cancer (not always easy for blokes to do). My cousin’s 36 year old daughter has just been diagnosed with breast cancer and will start chemo next week.

My family is not able to identify the gene defect that causes our cancers. I want to make sure that we ALL know our risks and I am taking positive steps to ensure I have every chance possible of being here when we have an identification. My DIEP flap surgery will hopefully be performed by April 2010 and after 4 pregnancies (I have 13 yr old twin boys and 3 girls) and 9 years breastfeeding what a bonus new boobs and a flat tummy will be. How exciting if my 8 yr old went to school and said for news “My Mummy came home with new boobs today!” I don’t care who knows. Let’s get people talking and aware. My family are not victims, we are survivors and we will change things for the future!