GETTING TESTED FOR THE BRCA MUTATION

Since starting this blog and especially since Angelina’s BRCA mutation and subsequent prophylactic mastectomy hit the news, there has been more interest from friends and family who might be considering being tested.

The process isn’t necessarily complicated, but there are things that I discovered along the way, that you might not read in a manual or that your Dr will tell you. With this in mind I thought it would be a good idea to outline what I did (and should have done) when I got tested for the BRCA mutation.

I will say that this is my experience and my experience in Australia (with a bit of the UK health service thrown in). This is not a definitive guide and I have listed reference points at the bottom of this article where you can go for more information. If any Aussies want to tell me their experiences I will continue to update this post to make sure it’s relevant.

Before you do anything, sort out your admin

Before you think about getting tested it’s worth sorting out certain things you may not have already and may need further down the road.

If you don’t have life insurance, it’s probably a good idea to sort that out before you get tested so a positive result isn’t taken into consideration when calculating your premiums, or working out whether or not they will insure you.

More important than this, GET DECENT HEALTH INSURANCE.  I cannot stress this enough. I had some health insurance, which meant I was somewhat covered when it came to my operation. But my poor level of health insurance affected some of my decisions, including what hospital I could choose and what surgeons were available to me. Also, as a non-permanent Australian resident, as I am, you also need health insurance, otherwise you won’t be eligible for any rebate under the reciprocal Medicare agreement.

You need the health insurance before you get tested otherwise the BRCA mutation or any surgery resulting from a positive result will be seen as a predetermined condition and your insurance company may not cover you.

Know your family history

In order to qualify for testing, you will need to demonstrate why you might be eligible i.e. you have high incidence of cancer in your family. You will be asked this from the start and then time and time again if you do test positive and decide to undergo surgery.

Speak to your family members and find out who in your family has had cancer, what cancer they have had and what age they were diagnosed.

This quiz will help you determine whether you are at high risk, and shows you some of the questions your Drs will be asking to determine whether you are a candidate for testing. They include a family or personal history of breast cancer before the age of 50, incidence in two or more relatives, breast cancer in a male relative, cancer in both breasts or twice in the same breast, breast cancer and Ashkenazi or Eastern European Jewish ancestry and ovarian cancer at any age.

http://www.inheritedrisk.com/inherit-risk-cancer/

If you have not had cancer but think you may be at risk, find out if anyone in your family has tested positive for the mutation and request a copy of their pathology results.

If no one in your family has been tested, but you have surviving relatives who have had cancer, you may want to request that they get tested first. The reason for this is a little complicated but this extract explains why quite succinctly:

Genetic testing for mutations in the ‘cancer protection’ genes is complex. First, the mutation has to be identified in a family member who has or had the cancer.  This is called a mutation search and may take considerable time.

Second, and only if a mutation is found, other family members without cancer can be tested to determine if they have inherited the faulty gene. This is called predictive genetic testing (see Genetics Fact Sheet 21)”

http://www.genetics.edu.au/Information/Genetics-Fact-Sheets/Cancer-Genes-and-Inherited-Predisposition-Overview-Cancer-Genetics-1-FS47/view

My Dr explained it by saying, looking for a gene mutation is like looking for a needle in a haystack. But if someone gives you a map – in the form of your relative’s genetic mutation make-up – it makes it easier to determine an accurate result.

Speak to your Dr

To get the process in motion, I first went to my GP, explained my family history and that I wanted to talk to someone about testing. They referred me to the Hereditary Cancer Clinic in Randwick but your Dr will refer you to the best place for you.

Armed with my family history, my uncle’s pathology results and the name of the clinic where he was tested, the Drs at the Hereditary Cancer Clinic were able to put the wheels in motion.

Before you sign a piece of paper and give your blood to be tested, the clinic will ensure you have talked to a genetic counsellor.  They aren’t like normal counsellor in any way shape or form.  Their job is to ensure you have enough information about testing, what a positive result means for your risk, its implications and the options that are available if you do test positive.

Then when you are sure you sign a piece of paper and the testing process begins.

It takes about a month (if not less) to get the results. Mine was longer as they were getting my uncle’s blood from the UK and the NHS didn’t make this very easy for them.

Get some support

As a lot of you know I am a stubborn person who is determined to do everything by myself. Looking back I wish I’d sorted my support system a lot sooner. I have great friends, but you need people who get it. It didn’t help for me that I broke up with my boyfriend and got made redundant couple of days before I got my results.

Pink Hope are the Australian charity that helps women with both support and resources and I have met amazing people through them who told me things I needed to know, but would have never asked.

Other Facebook groups I’m a member of are called Previvors and the BRCA Sisterhood group.  These are closed groups and you may have to explain why you are qualified to join. I would say, these groups are brilliant, but I am glad I didn’t join these particular groups until I was ready to have my preventative mastectomy. Culturally American groups are very different from Aussie and UK groups – we are a lot more conservative and less likely to share so honestly, or visually. This is brilliant for when you’re going into surgery, but at the BRCA testing stage I’m not sure how helpful it is to see women’s reconstructed breasts. The ‘freak-out’ potential is a little too much.

I started seeing someone professionally following my diagnosis. I only went a few times but I do think it was useful to help try to process everything.

Results day

Take someone with you and get them to drive you.

Despite having broken up with Mr F a couple of days before the test, he was the person I wanted to come with me.  Go figure huh.

Just having someone there immediately after helps avoid those feelings of despair and the opportunity to overthink.  We went and had a lot of wine and spoke about everything other than my new BRCA status and our relationship.

A positive result

Remember throughout all of this, you may not test positive.  But if you do, it’s not a death sentence. You need to remember you don’t have cancer and chances are, you may not get it any time soon. Take your time deciding what you do next and like I said, lean on everyone you can for support.

Resources

–          http://www.australianprescriber.com/magazine/34/2/49/51#.UZoFQ7Vgd2A

–          http://www.genetics.edu.au/Information/Genetics-Fact-Sheets/Cancer-Genes-and-Inherited-Predisposition-Overview-Cancer-Genetics-1-FS47/view

–     http://www.genetics.edu.au/Information/PublicationsBrochuresandPamphlets/Genetic%20Tests%20for%20Breast%20and%20Ovarian%20Cancer%20Decision%20Aid

–          http://pinkhope.org.au/

–          http://www.mydestiny-us.com/

On the TV

So as promised, here is me, talking about Angelina Jolie‘s BRCA mutation and mastectomy, as well as my own experience as a carrier of the BRCA2 mutation, on TV. 

Please don’t judge my initial stuttering or how my chest gets blotchy towards the end of the interview. I also apologise in hindsight to the reporter for seemingly arguing with him about the statement he makes on whether people would get on a plane if there was an 80% chance of it crashing.  It’s clear I haven’t actually listened to what he is saying and just respond how I want to. But look, that’s the key to effective media relations and a tactic politicians use all the time so I’m not too worried about it. 

 

Taking over-sharing to a new level

JoliTweet

Today I went on national TV and talked about getting my boobs chopped off. I almost cried when I talked about my mum, and I now want to remove a mole I have on my face but apparently I did very well. I managed to get a plug in for http://www.pinkhope.org.au and am chuffed that I did my bit to get our story out and raise awareness of BRCA. I’ll try to get a clip and post it up here.

The other highlight was that Angelina Jolie ‘favorited’ my tweet to her. We’re so going to be BFFs forevs and evs.

Very Inspiring Blogger Award

inspirational blogger

The only award I have every received was a highly commended certificate for my handwriting at a St. David’s Day Eisteddfod in primary school.  Those of you who know me, and especially those who work me will know that I have the most appalling hand-writing known to man. I blame my Dad who has passed on his Drs scrawl, combined with a flamboyant and creative mind. Anyway, I think they made a big mistake.

So, it is with great humility and pleasure that I accept what I believe in my first ever, legitimate recognition with the Very Inspiring Blogger Award.

One of the brilliant things about bogging has been connecting with people from all over the world in similar situations to myself. My very first ever blogging friend was Mogatos who writes, Saying NOPE to Breast Cancer http://bilateralmastectomy.wordpress.com/2013/04/25/very-inspiring-blogger-award/. Her blog is brilliant and very informative and she has been a great support to me over the last few months, including very kindly nominating me. She’s also a couple of months ahead of me in her journey so she gives me a bit of a heads up as to what to expect.

One of the conditions in accepting the award is to tell people 7 things about yourself. If you know me you already know I am a massive over-sharer so it’s difficult to find 7 I won’t have already shared, but here goes:

–          I am 34, female and live in Australia. I grew up in Wales and class myself as Welsh

–          I can only say a few, rude phrases in Welsh

–          I have 3 tattoos. One is my mother’s name written in Thai, one is a set of stars that I got done in Selfridges in London and the last is now a splodge I obtained from a questionable establishment in Swansea

–          I’m a pretty good singer. I don’t really sing any more but I used to a lot and won lots of beer T-shirts in university Karaoke competitions. I even won a ‘pager’ in the days before everyone owned a mobile phone

–          I starred in a reality TV program when I was 19. It was on Sky 1 in the UK and it was filmed over 2 weeks in Malouf. This is all you need to know

–          I love coffee so much and my morning cup, in a nice coffee shop whilst reading my kindle is my favourite part of the day

–          My mum was and still is my absolute hero and I can’t believe how much I still miss her 12 years since she died

OK, there are probably a few more than 7 facts there.

The other condition is that I have to nominate other bloggers and tell them about it. So my nomination goes to Lissie Bendy who writes about her journey with breast cancer at 37 on http://shittytittiebangbang.com/. Lissie’s humour and courage is incredibly inspiring and I love her Shittietitttie Chemo Cuts Reveal Challenge. The challenge inspires people to make positive changes in their life and share their commitment with others. Every time ten people share their commitment, she gets a new haircut. And despite sporting new locks that would challenge the best of us, she always looks sensational. http://shittytittiebangbang.com/2013/04/08/the-shittietittie-chemo-cuts-reveal-challenge/.

So along with my nomination, here are my commitments to make positive changes in my life.  I commit to keeping my stress levels to a minimum, to stop sweating the small stuff and to meditate at least once a week in order to achieve this. I will go see a Dr about my really painful periods to put my mind at rest rather than worrying about it. And finally I will thank my lucky stars every single day that I was able to take at least a little bit of control over my future and will so enjoy this life I have to its maximum limit.

Questioning my decision: The Battle We Didn’t Choose

I don’t really know how to write this post. As you know the last couple of days haven’t necessarily gone to plan (my plan at least) and I had a moment where I questioned whether what I’d done the right thing undergoing my prophylactic bilateral nipple sparing mastectomy?

This morning I came across this man, Angelo Meridono’s photos that capture his wife’s battle with breast cancer. They are the most beautiful photos and have moved me beyond articulation. They capture his wife, Jennifer’s strength, courage and pain.  The Battle We Didn’t Choose.

I then read his wife, Jennifer’s blog where she writes about her treatment, her cancer and its effects on her body http://mylifewithbreastcancer.wordpress.com. Throughout she is eloquent, courageous and for me, truly inspiring.

Jennifer sadly passed away on 22nd December, 2011. She was 40 years old.

I am humbled by Jennifer and Angelo and the pain they have and will be going through.

So as I moan about staying in hospital too long, pesky drains and plastic surgeons I think I’ve lost perspective on why I set out to do this in the first place. I am not brave or courageous and not proud of my mindset over the past few days. Jennifer and Angelo’s story is a stark reminder of how incredibly lucky and privileged I am and my intention is hopefully finding clarity once more.

X

 

 

Bra Binning: One night to Surgery

In the 1960’s the woman’s rights movement was well-known for supposedly burning their bras as a symbol of liberation. This originated on September 7th, 1968 when a group of feminists gathered to protest against the Miss America Pageant in Atlantic City. http://www.en.wikipedia.org/wiki/Miss_America_protest

What grabbed the media’s attention at the protest was the ‘freedom trash can’ into which women symbolically threw ‘instruments of female torture’ including false eyelashes, make-up, girdles and bras.

bra burning

Now I don’t feel like my bras are an ‘instrument of torture’, I think they are an incredibly useful piece of clothing that make your boobs look infinitely better than they do sans-support. However, as I have less than 12 hours left with my current boobs, I am marking the occasion with my own freedom bin and liberation movement from the threat of breast cancer.

We’re all friends here and have already discussed my reluctance to buy nice underwear.  I have nothing against nice underwear, it’s just nice underwear is expensive (especially in Australia) and I really like nice, but cheap clothes. Given the choice between a trendy top from Sports Girl and a lacy intimate from Elle Macpherson, I’ll choose the top every time.

Having known I was going to undergo this surgery for about 6 months has also exacerbated the standard of my bra portfolio.  There’s been no point in buying any new ones, but as a result, my brassieres are about to disintegrate. But, the time has come, and they have treated me well, so before they go in Trisha’s Freedom Bin, I want to pay them a little tribute….

favbra

This is my favourite and most recent bra. I thought I’d only bought it a year ago. Mr F says it’s about two. Whilst it looks nice from a distance, look how fake tan has muddied the colour of the baby pink straps.

WhitebraMy only, kinda white bra whose underwires are about to break through the material. I didn’t even purchase this one and was a hand-me-down from a friend.

 onehook

An old bra from the UK – only one of the hooks still works.

old

My oldest bra, it doesn’t fit and the straps are way too long.

dots

What looks like a teenager’s bra, way too small and my nipples always break-free .

pink

Dingy, used to be pink bra, maybe my first Australian purchase. I’ve been here four years.

So whilst I’m not sad to send my bras to my Freedom Bin, I would like to thank them for their support. Thanks guys, your work here is done…

 

Post-Mastectomy Commitments

Image

It’s really important for me, as the countdown ever looms, that I make commitments now about how I want things to be after my mastectomy.

I’m not naive. I realise that many things will be out of my control. Whether I’ll get an infection, how much pain I’ll be in or how quick my recovery will be.  I know that all of these things are out of my control.

What is within my control is my state of mind and how I respond to my situation.

Believe it or not, these past 3 months have been some of the happiest of my life. I’ve been focused on something much bigger than me, it’s easy to see what’s important and what’s not, I don’t sweat the small stuff as much and I’ve reconnected with friends I haven’t spoken to in years. Above all, I’ve had an amazing reminder of how wonderful the people in my life are, as well as the kindness of strangers.

But I’m keen that I don’t lose sight of all of this when I’m so desperately tired, or my chest feels like it’s in a vice, or I’m frustrated that I can’t do everything I was able to do before the op. So this is why I’m sharing my post-mastectomy commitments.  To serve as my promise and a very public reminder for how I want to, and how I should, think and act once my boobs have left the building:

I will not forget why I choose to remove my boobs and that it is the most positive decision I could have ever made

I will commit to progress!  Not measured on how I was before the operation, but to how I was yesterday

I will remember to smile at least once a day

I will relish in the kindness of others and thank my lucky stars that these people are in my life

I promise not to get frustrated and take it out on Mr F because he’s the closest person to me, but will remember how much he has sacrificed for me and supports me

I will not fall into a funk and will commit to expressing gratitude, for the obvious and the hidden, every single day

Shopping for a Mastectomy: Part 2

Welcome to the latest installment in the series, ‘Shopping for a Mastectomy: Part 2.’ Otherwise known as my way of asserting some sort of control over my situation through the process of buying things. Now I’m no expert on shopping for a mastectomy, not having had one yet, but I have gained inspiration from my blogging friends laurennicole333 and Mogatos, and I have read A LOT of sources. So whilst some of these items are, I’m sure, very useful for someone undergoing a mastectomy, some may be a little frivolous and nice to haves, not need to haves.

Detachable shower head

Whilst my boyfriend has very kindly offered to hose me down in the garden, I think the best way for me to wash, without getting my bandages and dressings wet, is with this nifty, hand-held device. To be used in the comfort, and privacy of my indoor bathroom.

Check out the picture of someone washing their dog in a bowl. Comforting image for things to come…

Shower

Facial wipes

Before the hosing, I’ll be washed with the help of the nurses, a sponge bath and what is also known as a Glastonbury shower.

wipes

Dry shampoo

And without the ability to wash, my hair may become increasingly shiny, but I’m afraid that will be down to grease, not healthy vitality.

Dry Shampoo

Instant hand sanitizer

Infection is a real risk me for post-operation so I will be uncharacteristically particular and insist that any visitors, as well as Mr F, sanitize before enjoying my post-operative, drugged up, yet stimulating company.

sanitizer

Digital thermometer

On the subject of infection, chief temperature taker, Mr F, will make sure all is well and I am hopefully staying well within room temperature.

Termometer

Comfy pants!

I don’t know why, but I am keen to wear brand new knickers, each day, during my stay in hospital. So I have bought 8 pairs of comfy and brightly coloured Bonds underwear for every night I’m in hospital, to brighten up my day.

Pants1

Ugly pajamas

It makes sense that I’ll need button up pajamas when I’m in hospital as I’m unlikely to be able to lift my arms over my head. However, the majority of button down PJs are toweling  and believe it or not, Australia has a tendency to be hot so toweling is definitely not an option! Outside of that, my options were pretty slim.  None the less, I did find these relatively lightweight, yet ugly pajamasfor just $15 from our trusty Kmart. I have supplemented them with 2 singlets with big arm holes, in case I feel like I need to break out.

However, on first viewing of my night-time apparel, Mr F has insisted I spend a decent amount of money to get real silk pajamas that may stand more chance of a) looking OK and b) letting my skin breathe.

PJs

AMAZING slippers of love

Look! They have hearts on them! Something for me to spread the love as I escape from my hospital ward to the posh coffee shops in the private hospital on Level 9. A mere $8 from Target.

Slippers

Adult sippy cup

This one’s amazing. I don’t even have to tip it and it’s got a special little gizmo in it that cools the water as you drink. Oh, and it’s pink.

Sippy

So I think I’m pretty much sorted. What’s more, I even managed to tick off another item on my ‘Mastectomy To Do List’, with a fabulous new haircut. Yey me!  I’m going into hospital, not hiding, after all!

 Me

The Luckiest Girl in the World


Lucky3

I have been overwhelmed by the support I’ve received over the past few months and am incredibly grateful for it. Friends old and new have really touched me with their generosity and kindness.

The more people who know what’s happening, the more I get asked how I’m feeling. The most common thing I hear when I tell people what I’m about to do is how brave I am.  These words are of course, very kind. It’s just, I don’t ever really feel brave.

For me, taking the test was brave. Especially, as from my Dad’s side of the family, I have inherited the Ostrich gene. Symptoms include putting things off and not wanting to deal with overly hard situations. Side effects vary from unopened letters from the bank, overdue visits to the dentist and to late tax returns. So for me, taking the test was huge.  Besides, I’d always assumed I’d die at the age of 40 anyway, so what difference did a piece of paper make?

OK, so my life probably would have rolled out quite differently to how it is today – or somewhat like it had in my 20s. Moving from job or location every two years, drinking more than a healthy amount, exercising within an inch of my life, unable to sustain a decent relationship for any notable period of time and carrying round a massive chip on my shoulder.  Yes, it doesn’t sound much fun, BUT, it was familiar, so again, for me, the test was the brave part.

So now, the best descriptor for how I feel moving into the operation, is incredibly lucky.

I’m lucky to have had the most inspirational woman for a mother, albeit for too short a time, who was honest enough to speak to me about my risk.

I’m incredibly lucky that my late uncle was selfless enough to take a test that has given me information that may dramatically prolong my life, whilst he was coming to the end of his.

I’m lucky to have a supportive father and stepmother who financially and emotionally have enabled me to get to this point, from way across the pond.

And I can’t believe my luck to be with someone who, both emotionally and physically, is supporting and enabling me to take the most life changing step of my adult life.

I’ll never forget a conversation I’d had with a neighbour not long after my mun had died. My mum had always found her a bit tactless, but with a good heart so had formed a polite, location based friendship with her. Having gone over to tell her about my mum, she said, “Trisha, don’t you worry. By the time you get to your mum’s age, there will have been all sorts of medical advances, I’m sure you won’t have to suffer the same fate.”

I wanted to smack her in the face . Of course I wouldn’t suffer the same fate, I was 21 years of age and invincible!

The funny thing is, she was right. And as a result I have the power to change my fate. So maybe I don’t have the opportunity to feel brave. I’m too busy feeling grateful for being one of the luckiest girl’s in the world.

   Lucky lucky2

lucky4

Shopping for a Mastectomy: Part 1

One of the many wonderful things about the internet is the ability to connect with other people in similar situations to yourself. For me, I don’t know how I would have navigated this far without the support and advice from the women at Pink Hope http://www.pinkhope.org.au. And in the few short weeks since I started this blog, I have been lucky enough to come across some brilliant women  at different stages of their own BRCA journey, who are also using a the power of the keyboard to help make sense of the madness.

Planning is one of my strengths (and weaknesses), so it was a fantastic discovery to stumble across this fabulous blog post that outlines what you may need following a prophylactic, bilateral nipple sparing mastectomy… (snap). http://www.brca1results.wordpress.com/2013/02/22/things-to-prepare-master-list-for-prophylactic-bilateral-nipple-sparing-mastectomy/

Taking inspiration, and not needing much persuasion to go shopping,I decided to start preparing for the weeks after the operation. Starting at the the third item on my blogging friend’s list, heart shaped pillows for each arm pit.  Imagine my joy when I found these two little beauties for a mere $5 each, from the shopping mecca of all things you never knew you needed, Kmart!

heart pillows

I then moved round the store and up to the second item from the master list; over-sized button-down shirts.

shirts

Needless to say, my range of movement is going to be limited after the op, so the less I need to lift my arms the better. Both $19 from, you guessed it, Kmart. I wonder if I’ll be able to sell these to Mr F once I’m done with them?

We then move down the list to ‘other clothing’ and, not being a news reader, I’m going to need something baggy and easy to pull on and off, for my bottom half. So, with that exquisite criteria in mind, I opted for these fetching, ill-fitted sweat pants in this season’s gelato colours. Just $15 a piece.

pants

An unexpected $78 later and not an item from Sports Girl in sight, I have begun my post operation preparation.

If you do see anyone walking around Sydney dressed like this,

looking good

please have patience with them.  Their fashion sense is not within their control.