Cancer Plagued my Family – But I Took Back Control

 
Posted on October 19, 2018
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Don’t Just Share – ACT!

Breast Cancer Awareness Month is an important campaign. I feel the need to say that from the get-go, because, as many people will already know, I have fought long and hard to have Breast Cancer at the forefront of the media for years now. I am a proud Boobette and I am not ashamed to push each and every week to remind people to check their boobs.

However, just talking about Cancer Awareness is not enough. We need action. And not just for Breast Cancer, but for all female cancers.

Despite the upsurge in female cancers being screened for off the back of Jade Goody’s death in 2009, women turning up to be checked went from 500,000 extra checks to plummeting to a 20 year low this year. It shouldn’t take young women to die of these cancers to make us get regular checks.

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Ovarian cancer stole my grandmother’s life at 36 and breast cancer stole my Mum’s life at 35. A BRCA gene mutation took away my chance to have any more children and stole part of my femininity at the age of 34, when I had preventive surgeries, something I have spoken candidly about for many years.

At the moment there is no screening programme for ovarian cancer. Regular smears are the only way women can hold some form of control over early diagnosis.

I believe we desperately need a screening process that would give proper reassurance to those of us with a higher risk of the disease. Not only would it save lives, but it would prevent many women, of all ages, enduring massive life-changing operations and the repercussions.

Being told I was carrying the gene mutation cast a dark shadow over myself and my family, any other BRCA carrier will say the same. It hangs over your family like a dark storm, I don’t think anyone can fully prepare themselves for how it will affect them – physically, emotionally or psychologically.

In 2013 I thought I had faced the most difficult decision of my life – to have a preventative double mastectomy due to being a BRCA1 carrier. With breast cancer terrorising my family through the generations, it was the easiest decision to make but one of the hardest to go through. In 2016, I found myself facing yet another challenging decision.

I was aware that ovarian cancer lurked around my family but I didn’t know to what extent. According to my genetic counsellor, due to my distinctive family tree, I was actually at a slightly higher risk than the BRCA ‘norm’ of 40-60% chance. My own mother passed away from breast cancer, however, my grandmother, great-grandmother, both her aunts and two nieces were all diagnosed with ovarian cancer in their early 30s and passed away before they were 40.

Ovarian cancer and its effects have haunted another level of my family tree that carries the BRCA1 mutation for several generations. For months I would obsess about the symptoms of ovarian cancer (assuming the worst at any bit of bloating, irregular bleeding or stomach pains). It’s all I would think about from morning to night.

It wasn’t long before it dawned on me that having children was so important to me and that this might never happen. I’d watched many close friends grow into wonderful mothers and always felt a pang of envy.

Would I ever have that? Would genetics steal that dream from me?

I had been offered a bilateral salpingo-oophorectomy (BSO) – the removal of both fallopian tubes and ovaries – a preventative measure that would no doubt prolong my life and put a ‘pin’ in my fears. It would however mean that I wouldn’t be able to conceive children naturally.

It seems so unfair to me that any young woman would ever have to make such a hard decision.

But then even thinking about starting a family brought its own demons. I have such a long line of history with this disease, did I really want to carry that on by having my own family?

For some women, there is the option of pre-genetic diagnosis (PGD) to test if the embryos are affected by the gene. Unfortunately for me, this wasn’t an option as my local NHS does not fund or offer this.

I was advised in 2015 to give the BSO major consideration, a tough decision to make at the relatively young age of 32, but I was advised that I should make this decision before turning 33.

Just having the operation is not the only issue you have to consider. If I indeed did want children, I would need to pre-plan for that now. I would need to think about freezing my eggs for example.

I turned 33 in April 2016. My partner and I decided to try for a baby first before going down that scary road of hormonal injections, nasal sprays, and egg removal on advice from my gynaecologist.

In Feb 2016, much to the surprise of both myself and my partner, I found out I was pregnant. In my wildest imagination, I could never have dreamt that these words would escape my lips.

The revelation was bittersweet. I struggled with guilt. I still do.

Was it fair for me to have a child?
Am I being selfish?

There is an enormous chance that I may have passed the BRCA1 gene mutation onto my child; a gene mutation that has terrorised my family for generations.

What would my mum have done if she knew about the genetic link back then?

I hope one day my daughter won’t need to take the steps I have taken just to be able to see her own family grow up.

When you live with a risk of anything, there is always a fear that coincides with that. BRCA is no different. I always put on a façade that everything is fine, but deep down I’m drowning in this sea of grief.

The grief isn’t only for the parts of my body I was and will be forced to remove to save my life. It’s grief for my relatives that didn’t have the same choice back then that I do today.

So, during months such as these when we focus on raising awareness of female cancer, I urge you this… don’t just share these articles or the heartfelt memes that you see on the internet… Take Action!

Go get checked. Take a shower and check your boobs – or ask your partner to help you, it’s not scary and should be a part of everyday life.

Book that smear test, don’t fear the doctors, embrace the opportunity to get out ahead of these cancers.

THEN, spread the word.

Cancer still is a taboo subject. People hate the ‘C’ word, but the more we say it the less power it holds. Urge your friends to get checked and get checked yourself.

Cancer Awareness Months are fabulous, but ACTION is more important.

(Note from The Editor: Aimi has once again opened her heart and poured it onto the page in the hope that her story can touch just one person and prompt them to get checked. To read more from Aimi you can check out her author page here. If you need more information or would like to read more about the Coppafeel Breast Cancer Charity – you can click here.
To find out more about Ovarian or any/all gynaecological cancers you can check out these two sites. 
EveAppeal.Org
Ovarian Cancer Action.)

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