How I Survived a Death SENTENCE

I never knew my mum’s mum.  Know her?  I don’t even have a title for her. 

When you die before becoming a grandmother, no-one ever figures out what to call you – grandma, nanna, granny?  My maternal grandmother? Mum didn’t know her that well either.  Diagnosed with cancer when mum was just 6, sick for 10 years before dying when mum – her youngest child & only daughter – was only 16.  Mum didn’t know her mum had cancer.  She didn’t know she was dying, until she died & so she finished her childhood as a motherless daughter.

My Battle With Breast Cancer

A Family History of Breast Cancer

Mum’s mum received her breast cancer diagnosis at the age of 39.  Then, sometime later, she was diagnosed with ovarian cancer.  What are the odds?  Two separate cancers - unlucky!

Mum was diagnosed with breast cancer at 49.  She made some inquiries, & we found out what her mum had died from.  A family tree showed a lot of breast & ovarian cancers.  We guessed there was something “in the family”, but it was the early 90s, & no-one knew.  I was 18 & had just finished high school & I was terrified that I was about to become a motherless daughter just like my mum.

A few years later the BRCA1 gene was discovered, & its significance in hereditary breast & ovarian cancer started to become clear to genetic scientists.  But mum was better, her cancer gone.

Genetic Testing for Breast Cancer

12 years after that diagnosis mum was diagnosed with an entirely new breast cancer, not a recurrence but a new cancer.  Two separate cancers – what are the odds?  Wait…

Genetic testing was available now, & we found the devastating truth, mum’s family was being stalked by a killer, one buried in their DNA.

A closer look at the family tree started to show a family decimated by breast & ovarian cancers through three generations, & my generation was next.

I chose to have my family before undergo genetic testing.  I didn’t want the answer to change the way I lived, to dictate whether I had another baby or not.  I was determined to have my third baby, breast-feed her as long as I chose, & then face whatever might come next. There was so much information, & I had so many questions.

My blood was drawn, & three months later I went in for the results.  They asked me again if I wanted to know the results.  Apparently some people change their mind at this point & walk away without an answer! 

Testing Positive for the Breast Cancer Gene

The result, I have the genetic mutation, I am BRCA1+.  Unexpectedly I burst into tears.  “What are you thinking right now?” a nurse asked gently, & I replied that all I could see was a lot of surgery in my future.

This mutation gave me a 45% risk of a likely fatal ovarian cancer, possibly within the next 2-3 years & an 87% risk of developing breast cancer.  My mum had been lucky & escaped twice with her life, but all her female relatives were dead, many in their 30s. My options were to “watch & wait” which means wait & see if you get cancer, & then hope you can beat it if you do.  It is seen as a viable option for breast cancer risk, but not ovarian.  Ovarian cancer is so insidious, & so often fatal, & there is no effective screening to ensure early detection.  The strong recommendation was to remove my ovaries before age 40.  Several of mum’s aunts died in their late 30s with ovarian cancer, so at 34-years-old, I wasn’t waiting.

 I knew I couldn’t wait around for either cancer, so it was time for drastic action!

Waiting Around for Cancer

First step, surgical removal of my ovaries & fallopian tubes (& please just take my uterus while you are in there!).  Immediate “surgical” menopause, at just 34-years-old.  I was so glad I finished having my babies!  I got lucky though – no hot flashes, no real signs of menopause at all.  I guess I had to have a bit of good luck somewhere!

Next was the big one – I was planning a prophylactic (preventative) bilateral mastectomy with reconstruction.  87% is horrible odds.  If I had an 87% chance of being hit by an oncoming truck, I’d step out of the way & this was how I was going to step out of the way of my genetic inheritance.

Taking Preventive Measures

I got the letter for a consultation to start to organise this surgery in the mail the day I got home after my ovarian surgery.  The appointment is next week?  I couldn’t bear to travel that far just one week after surgery.  I postponed the appointment.  Anyway, I still had time.  

My husband lost his job.  Not a good time for me to take time off work for surgery.  I still had time though.

A few months later I scratched an itch at the top of my right breast.  What was that bump?  Surely I had one on the other side too, I just hadn’t noticed them before.  I spent two days trying to find the matching lump in my left breast.  Then I admitted there wasn’t one, my time was up, & I called the doctor. 

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Breast Cancer Diagnosis

A flurry of appointments, a worried breast surgeon, an ultrasound, a biopsy, & an MRI...A devastating diagnosis, & a hastily arranged surgical removal of a two centimetre triple negative cancer.  We told our kids – they were 8, 6, & 3.  They knew about cancer because mummy treats people with cancer, & mostly they get better, but sometimes they don’t…& sometimes they die.  Now mummy has cancer, is she going to die?  Definitely not!  (I hope…)

Chemotherapy was next & it was hard (but doable).  The first time I felt queasy, but I wasn’t sick – thanks to the 4 different anti-nausea drugs they gave me.  Around day 15 my hair started to fall out.  The kids helped to spray it a multi-coloured rainbow & we had a lot of fun.  Then we gathered in the bathroom & shaved it all off.  My husband cried, My children cried, I cried.  I wondered if I would ever have hair again, I learnt to tie a scarf around my head & I sometimes wore a wig.  I saved a lock of hair for each of the kids & for me, just in case, complete with green, pink & red hair spray.

Battling Breast Cancer

I was working full time.  Wearing my wig to hide my diagnosis from my cancer patients.  They had enough to deal with, without worrying about me too.  One day I wore a scarf, & a patient asked me if I had done the “shave for a cure”?  “Something like that…” I told her. I look back now & feel so much sympathy for the poor young mum, working full time through chemo, & I wonder how on earth I made it through that cold, dark winter, full of fear but desperately trying to keep it together for everyone.

Six cycles of chemo lasted nearly 5 months.  Every three weeks I fronted up for another infusion.  & each time I felt more tired, more run-down, & more like I didn’t want to do the next. All the time I wondered, would I be alive when my 6-year-old turns 16?  Will I see my 3-year-old go to school?  Will my 8-year-old tell me to just “drop him off down the road” on his first day of high school?  Or would it someone else be dropping him off?  Would my kids grow up not really knowing their mum?  Would they also be motherless children? Would my grandchildren grow up wishing they had met me, & wondering what to call me when they spoke of their long departed grandmother?

I kept showing up.  To chemo, to junior footy, to school concerts, to work, & to life.

Life After Cancer

Chemo finished in August, & one day I walked out of work to the sweet fragrance of the first wattle of the spring.  It wasn’t dark outside either, the sky was just a shade lighter than the week before.  I stood rooted to the spot on the concrete footpath, basking in the fact that the long winter was over, & the wattle was blooming just as new hair was beginning to sprout from my smooth, bald head.  In spring the natural world goes through a kind of rebirth, & I was doing exactly the same.  Every year now when the first scent of wattle wafts past my nostrils I go right back to that day & I feel a wave of gratitude that I’m still here.

In November I had my bilateral mastectomy with reconstruction.  Why both breasts?  What are the odds I would get another cancer…? Oh! 50%! My risk of getting a new breast cancer was 50% thanks to my stupid mutated gene.  So get rid of them both! 

A Double Mastectomy

My surgery was an 11 hour marathon where a team of doctors removed all my breast tissue, replaced it with abdominal fat to make two passable “breasts”, inserted 6 drainage tubes into my four surgical sites, & even repositioned my belly button so it would still look normal after all the tissue was removed from my belly. 

The mastectomies are the easy part, surgically speaking, but the reconstruction is an incredibly exacting microsurgery that takes many hours & aims to allow me to feel “normal” again one day.  I can’t speak highly enough of my surgical team who worked so long & so hard just so I could feel a bit better about myself.

When I woke I couldn’t move much, & I was on large doses of painkillers as well as having an epidural still in place.  I questioned myself constantly between the half hourly nursing observations, & the morphine-induced nightmares, & it felt like it was all a terrible mistake.

Battered, bruised, exhausted & completely dependent on the nursing staff, the first few days passed slowly, but gradually I began to re-enter the world.  Recovery was slow, but finally with drainage tubes gone & surgical sites mostly healed, I went home to my babies.  I was battered & bruised, from the experience of being diagnosed as BRCA1+, experiencing cancer, & removing so many parts of my body.  What a whirlwind couple of years they had been.

Advice From Someone Who Has "Been There"

If you are concerned about breast or ovarian cancer in your family, please talk to your doctor about genetic testing.  New advances are made all the time, & I hope my daughters won’t face the surgeries I had to, but knowledge is also power, & without the knowledge of my genetic inheritance I wouldn’t have taken my lump so seriously, & I may not have survived my cancer. 

There’s almost a 50% chance I would have gotten ovarian cancer anyway, & likely would have died from it long before today.  Every day I have with my children (& my life!) is one I probably wouldn’t have had if I hadn’t been proactive about getting this information & acting on it.

A great resource for more information about hereditary breast & ovarian cancer is FORCE – Facing Our Risk of Cancer Empowered, their website is full of factual information & personal stories from women who have faced the same types of decisions.

What Comes After Breast Cancer

Today my “breasts” are mostly numb, but my scars have healed. 

I’ve had my nipples reconstructed, & one day I will probably have colour tattooed to finally finish off the job completely.  That three-year-old will be eleven soon, & my kids know their mum.  I plan on being here for a long time to come – I don’t know what my grandkids will call me yet, but we can figure that out later.  I have time.

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