It's in the family

The problem with having a genetic cancer risk is that, well, it is genetic and therefore in the family. For many, by the time they are diagnosed with the BRCA gene mutation their lives have already been touched by breast or ovarian cancer.  

For me the first time I thought about breast cancer was when my half-sister Melissa was diagnosed at just 30 back in 2010. A year later, at just 48, my Mum was diagnosed with stage three breast cancer after finding two lumps in her breast.

Looking back on the period that my Mum was suffering, all I can remember is a blur of chemotherapy appointments and hospital visits. Surprisingly I also remember a lot of laughter as we tried to keep spirits up and I have a hilarious picture of my baby niece wearing my mum’s long dark wig.

One thing that I do not remember however is the word ‘genetic’ as the doctors never suggested their cancers could be linked. Breast cancer is now unfortunately a common disease with 1 in 8 UK women being diagnosed in their lifetime so too often it is seen as ‘bad luck’ and not because of a genetic predisposition.

Both beautiful brave ladies are both now in remission from the illness but it wasn’t until four years after Melissa was tested that we even heard the phrase ‘BRCA’. That is four years that we were unaware of the risk we all had of developing breast cancer. It also means that both Melissa and my Mum have been left with one healthy but at risk breast and face further decisions about their future. Very unfair given the extent of surgery and treatment they’ve both already endured. 

Fast-forward to today and we know that Melissa, my Mum, my younger sister Charlotte and myself all carry the BRCA2 gene mutation.

I’ve spoken a lot about how I’m handling the news and my risk. I’m going full steam ahead with a full double mastectomy and I’m trying to raise as much awareness as I can along the way. BUT I am not saying that is the only or even the best way to deal with the situation; it is just what works best for me. I wanted to talk a little about my Sister Charlotte to give another perspective to the story.

Charlotte is now 24 and found out that she had the BRCA2 mutation a couple of weeks before I found out my news. She was very much the force behind arranging testing for her and I, after we found out our Mum tested positive. She handled the news amazingly and seeing my younger sister be so strong really helped me to be strong about both her news and my own news.

Charlotte has two lovely kiddies, my niece Lillie (5) and my nephew Josh (2) and her focus has always been very much about her young family. I know that she wanted to find out her risk to ensure she can pro-long her life for the children and know more about the genes she may have passed down to them.

She has been through a lot of the same counselling sessions, meetings and appointments that I have and has decided to postpone her surgery until 2016/2017 as she would just struggle too much to look after the kids (especially a very boisterous toddler) at the same time as under-going major surgery. At 24 she is also very young meaning her risk is lower at present (it increases with age).

 Her surgery will also differ greatly to mine. She has decided to opt for the TRAM flap reconstruction that means that her breasts will be reconstructed from abdominal tissue. The surgery can be a much more serious operation as it means there are two wound sites but can provide a much more natural feel and shape to the breasts

I know that in the future she plans to be very open with Lillie and Josh about the genetic risk and very supportive if either want to be tested for the gene mutation when they’re older. For now though she is putting all thoughts of surgery on the back burner and concentrating on family life. She has been very open with friends and family about the diagnoses but hasn’t been very vocal about it to a wider audience, which I completely respect.

As for me, I have now completed my pre-surgery assessment and been approved for surgery. My operation will likely take place in October although an actual date is yet to be confirmed.

I’ll also be taking part in Tough Mudder on September the 27^th to raise awareness and funds for Breast Cancer Care. If anyone could spare a little to sponsor me it would mean the world to me: https://www.justgiving.com/Killer-boobs

Hopefully next time you here from me I’ll have a date to have these killer boobs removed!

With love, Katie 

Fight like a girl, wait like a lady!

Waiting, waiting, waiting. Since my last post a couple of weeks ago it seems that all I’ve been doing is waiting and it’s absolute torture!

At my big meeting I was told to expect a surgery date in September but six weeks of eagerly checking the post box later, I still do not have a surgery date. This is leaving me in a very unsettled state of limbo.

Some of you may wonder why I’m so anxious to get a date for this serious and unpleasant operation but for me this whole experience has been about choice and being empowered by that choice. I’ve made the decision to take control of my destiny and prevent breast cancer, I’m ready and waiting for this next step but I’ve got no control over when it is going to happen.

I phoned the hospital this week pleading for an update and was left a little distressed by the response. They’ve basically forgotten to plan in my MRI scan which I was told was necessary to check that cancer isn’t already present in my breasts prior to surgery taking place. As there is an eight-week waiting list for this scan they’ve now decided that it’s not worth delaying surgery for the MRI; as I’m under 30 the risk of cancer being present is too low apparently. This seems very strange to me, as the risk of cancer is high enough for a mastectomy!

They’ve now said to expect a surgery date in September, October or November and I may only get two week’s notice. This means that now I feel like the next three months are on hold and it’s one of the worst things about the whole situation so far.

I’m a planner and planning is necessary for me to feel settled especially whilst going through something as big as this. I’m a 27-year-old girl with a hectic social life and busy career and at present I’m finding myself half-heartedly agreeing to plans and not looking forward to anything because I simply do not know when I’ll be ‘out of action’. This whole experience has been a massive roller coaster of emotions and I’m not going to lie, the last few weeks I’ve been really struggling. I’d stopped training at the gym and started comfort eating, my stress levels have been really high and I’ve felt everything is a just a bit pointless.

Another emotion I’ve been feeling hugely is guilt; guilty for feeling sorry for myself and getting upset about trivial things like making plans when so many women don’t even have a choice. Too many women get breast cancer and their life is instantly put on hold until they survive it or tragically die from the illness. I realise that this guilt is destructive and I’m digging deep to keep positive. I need to remind myself that I’m going through a massive life-changing event and I am allowed to feel down and scared.

I’ve had to try very hard this week but my eating and training is back on track and I’m concentrating on all of the positive things that have come out of this situation.

One of those positives is the amazing response that I’ve had from my blog and I’m amazed at the way that cancer brings people together. Women I’ve never met have given me the most fantastic support online by bravely sharing their stories and going out of their way to help me through. I continue to receive messages of admiration and encouragement from so many people and my story is being featured on ITV Anglia News next week.  

The reason I’m sharing the ups and downs of my emotions is because I hope that it will help someone going through something similar. Yes us BRCA girls are lucky that we don’t have breast cancer and that we have warning but it is still a massive deal and really really crap! We’re allowed to cry, scream and feel hard done by at times.  

Having said that positive thinking is very underrated for what it can achieve and I really am going to try my hardest to continue to fight, train, laugh and smile my way through this, with a positive outlook, even if that means just waiting.

#Fightlikeagirl 

OMG so I’m like totally getting new boobs!

“Great! Now I can have the boobies I've always wanted.” Said no woman having a mastectomy ever, preventative or otherwise.

Now you may think I may be stating the obvious here, especially if you've undergone a mastectomy or know someone that has, but sadly this actually seems to be a common misconception.

Quite a lot of people have said to me ‘at least you’ll get new boobs’ which I guess is basically true, if all goes well with my reconstruction. I think the main issue though is that people seem to be missing the obvious; I’m having a mastectomy, an operation to remove my breasts, not a ‘boob job’. The two are very different things.

Most people that have said the comment to me are friends or people close to me and I know they only have my best intentions at heart. Granted it is a hard subject to talk about and many want to comment on the bright side or make it a little cheerier to discuss and for this I forgive them.

However there are those people out there that seem quite ignorant on the subject and I guess that this is fair enough if you’ve been lucky enough to never had to deal with breast cancer or a mastectomy before. All that I ask is that if you are addressing someone going through a mastectomy (preventative or because of cancer - it’s awful for everyone) then you do even a little research.

I've been trying to increase the profile of blog as much as possible to raise awareness of genetic breast cancer. I’ve been in touch with many local press titles and a few national women’s titles, 99% of them have been nothing but kind and supportive, with two even agreeing to publish my blog on monthly basis and with a local TV news channel also being interested.

It is the attitude of one editor however that has prompted me to write this post. He who shall remain nameless to save him some embarrassment emailed me the following question:
(This is a direct quote)

“So medically speaking, you’ve been ADVISED that this procedure needs to happen. Now it’s not the BEST news in the world, granted.
But….is there a tiny part of you in the back of your mind that’s thought, ‘Great! Now I can have the boobies I’ve always wanted.”

It actually amazes me that an editor of a magazine with a reported readership of 10,000 a week could be so small-minded. Perhaps he was trying to be a little tongue-in-cheek or maybe he genuinely was that naïve but the result was quite hurtful to a 27 year old girl who is having her boobs removed. I’m publishing my reply with the hope that it may clear up a few misconceptions:

Hi ##

Don't worry, no offence taken. I've read your magazine so I feel I know somewhat how your mind works. This is actually a common misconception amongst those not in the know.

The short answer is no. The long answer is that my boobs will be left scarred, numb and unable to ever breast feed. My existing breast tissue will be shaved away from my skin and nipple. There's a moderate chance my nipples won't survive the operation and slightly lower chance that the reconstruction will fail and I'll be left with nothing there at all.

If the reconstruction does goes well then I will be left with implants but my boobs will be the same size or smaller than they are now as there won't be any tissue to support them. Most nerve tissue will also be removed so they won't have any sensation and they'll also be cold all of the time as they'll ultimately be completely silicone with a skin covering. I hope this has answered some of the questions your wandering mind has and please don't be scared to ask if you have any more.

Best wishes, Katie

P.s 'the boobies I've always wanted' are ones that aren't trying to kill me! x

I should add that I’ve since received a full apology and I really hope that he’s one person that has learnt a little about what me and a lot of other women are going through.

Anyone that knows me or has been reading my blog will realise that I am trying to be as positive as possible about this whole experience and it pains me to write a slightly more negative post, however I feel in this case it was necessary. I’m undergoing my mastectomy to prevent an illness, which I know is much worse that anything I'll be going through as I listed in my reply, and for that I do still feel extremely lucky. I won’t be one of the 1000 women that die a month in the UK from breast cancer. So I will continue to fight like a girl.

Next stop, MRI…


With love, Katie x  

Killer boobies- it's on!

September: the start of autumn, the month of my best friend’s wedding, my crazy Tough Mudder challenge and a full double mastectomy...hold up! What?

For those of you that know me or have been reading my blog you’ll know I’ve been planning to have preventative surgery around November time, however, this all changed last week when I was informed by my breast cancer care nurse that it’ll likely take place in early September.

‘The big appointment’

Last Tuesday was the day I’d been waiting for for some time, the day of my surgery planning appointment.

Over the last year I’ve met with genetic counsellors, psychologists, nurses, general surgeons and plastic surgeons. Last month they discussed my case at a management meeting and at this appointment I was going to find out whether my case would be moving forward.

As I sat in the breast cancer clinic waiting room I was very aware that once again I was the youngest and healthiest in the room with most ladies obviously suffering from breast cancer. It’s an odd feeling and sometimes I do feel like I don’t belong there and I wonder if this is how a lot of BRCA+ ladies feel.

As I was called into the consultation room I felt a sudden rush of panic and tears flood to my eyes, I’m normally so positive about the situation but there’s something about being in that clinic that brings it all home with a crash. I was very happy that my supportive boyfriend was there to hold my hand and I’d pulled it together by the time I shook hands with my surgeon.

Within five minutes my surgeon had informed me that my case had been voted for with a resounding yes and my surgery would be taking place. This was very much expected as there’s no reason why it shouldn’t go ahead. I’m young, fit and healthy, of sound mind (if you don’t ask my ex-boyfriends!) and well, my boobs are trying to kill me.

I swiftly signed the consent forms and tried not to focus on the list of possible complications listed such as loss of the nipples, reconstruction failure and rejection of the implants. The conversation then turned to dates and I was quite taken aback when I found out the most likely date would be early September, or at the latest, early October.  This is a lot sooner than I was expecting and I felt a mix of emotions; I felt scared as it now felt very real but I was also relieved as the sooner its done, the sooner I can start my recovery and the rest of my life without that 86% risk hanging over my head.

After the meeting with my surgeon it was time to have my photos taken, which turned out to be one of the most awkward but comedic experiences of my life. As I walked into the ‘clinical photography unit’, which is a surreal mix of a hospital consultation room and a photography studio, I was greeted by a young man in his early twenties. I gave him a slip of paper, that was basically a diagram of a women’s anatomy with a big circle around the boobs, and things instantly turned awkward. This was quite an odd situation for me but the poor guy seemed more nervous than I did. I was told to undress from the waist up and stand on the ‘x’.

I then had to pose for a variety of photographs with my hands behind my back or above my head as Dr Awkward zoomed in on my boobs. He was very quiet and nervous but I struggled not to laugh as all I could see behind him was my boyfriend sitting there eating blueberries one by one as if he were watching a very awkward comedy or the start of a very bad porn film! I’m so grateful that he’s been there to hold my hand throughout this process but the comedic relief he provided that appointment was exactly what I needed and after I got dressed and left the room we laughed the whole way down the corridor.

I’m now booked in for the last three stages before my surgery can take place: an anaesthetic assessment, an appointment where I’ll be measured for implants and a   MRI scan. The MRI is to ensure that there isn’t cancer already present in the breasts before surgery  which is something that has to be checked when I’m living with a very real 86% risk.

September was due to be a very big month for me with a hen weekend, being a bridesmaid for my best friend and taking part in Tough Mudder so I am really hoping that my appointment does come through for October so that none of that is disrupted. At the same time however I really want it done and over with as quickly as is possible.

Waiting for a date does feel a little like torture at the moment, especially for a planner like me. I hate not knowing if I’ll be able to attend my best friend’s hen weekend or whether my Tough Mudder training is all in vain but whatever happens I know I’ll get through it. My boyfriend, friends, family and colleagues have all be fantastically supportive and understanding and I know whatever happens that I’m ready to deal with it head on and fight like a girl.  

Life saving surgery vs.vanity.

I'm lucky; maybe not winning the lottery, being married to Channing Tatum kind-of- lucky, but I am lucky.

I've been given a warning that I have an 86% chance of developing breast cancer in my lifetime and I will be undergoing a double mastectomy to reduce my risk to around 4%. The surgery could save my life and I’ll be able to say I will never get breast cancer: how many women would kill to be able to say that? So I shouldn't really be worrying about what I’ll look like…right?

I think vanity is a pretty normal thing for most people, 27-year-old Essex girls especially. I work hard at the gym, I watch what I eat, I have my nails done, I colour my hair and I probably spend too much money on make-up, clothes and shoes. I take pride in my appearance and shamelessly so. So why do I feel so guilty about worrying what my boobs are going to look like?

The reality is I will be undergoing a double mastectomy with reconstruction using implants. I will have scars, there is a moderate possibility I’ll lose my nipples and there is even a small chance that the reconstruction will fail and I’ll be left without any breasts at all. I'm not going to lie, all of that scares the crap out of me!

I attended my local BRA (Breast Reconstruction Awareness) group in February, which is basically a show and tell by extremely brave women who have gone through breast re-construction. As I walked in to the hospital room I felt frightened for the first time since hearing the news I’m BRCA2+.

Around 10 ladies were standing there showing their re-constructed breasts and talking about their experiences of surgery and recovery. Don’t get me wrong here these women were all beautiful and strong, but; and I'm going to brutally honest when I say this, I was really upset at the thought that my boobs would look the way theirs did. Not only was I scared and upset but I then felt extremely guilty for being so shallow.

I spoke in length to many of the women; most had battled cancer for years. One lovely lady told me the worst thing about her recovery was not being able to pick up her children for weeks. I can only imagine how distressing that was for her however; for me, one of my biggest worries is not being able to train at the gym for possibly months after my surgery. When I admitted this to her, she gave me what I can only describe as a look of utter disbelief and disgust. I left that meeting feeling scared, silly and very superficial. For a few weeks I seriously considered postponing my surgery to a time in my life where maybe I wasn't so selfish and didn't care so much about my appearance and lifestyle.

Since that day I have realised that maybe I was being a bit hard on myself. Routine and priorities are personal and relative. My lifestyle will be severely disrupted due to my surgery and I should not feel guilty about being sad about that.

When I talk to people I know about my surgery or share my fears about what they’ll look like post-mastectomy, the response is almost always ‘at least you get new ones’. Yes that is true, I will be having a reconstruction but they will look scarred and different to what I'm used to. I have realised that it is okay to have these fears and worries and that it does not mean that I am vain. I want anyone else in the same situation to not feel alone in these fears and to be able to relate to this blog.

I view myself as lucky. I'm a hell of a lot luckier than those women than don’t get a warning and have to battle cancer instead. But I am still a normal 27-year-old girl and I still have the same fears and concerns as every other 27-year-old girl and I should not feel guilty about that.

So for now I'm going to keep positive, continue to raise awareness, keep fighting and hopefully not be so hard on myself. F you breast cancer, F you 86% chance, you’re not winning this one.

So my boobs are trying to kill me...

I'll start my story on a hot summer's day last July. I'd gone alone to my appointment at Broomfield Hospital's Breast Clinic as I wasn't feeling too concerned about my results. As Emma, the genetic counsellor, delivered the results that I had tested positive for the BRCA2 gene mutation I didn't really know how to react. In fact it's taken nearly a year to know how I feel about it enough to start this blog.

For me, being told I have the BRCA2 gene mutation feels a bit like a half-diagnosis. Yes it does mean that I have an 86% chance of developing breast cancer and over a 40% chance of developing ovarian cancer but day to day it doesn't actually change anything. I'm not ill. I'm not sick. I don't have cancer. I don't want sympathy and ultimately the only thing that has changed is my knowledge of my risk, which I now view as an incredibly good thing.

I think my family's history with breast cancer is a big reason for my lack of panic over my diagnosis. My half-sister was diagnosed in 2010 aged just 30 and a year later my Mum was diagnosed aged 48. Both went through gruelling surgeries, chemotherapy and radiotherapy and suffered greatly through their battles with the disease but happily both are now safety in remission. I think that seeing both my half-sister and Mum survive breast cancer it means to me that I don't automatically view it as a death sentence, although I do realise there are many who aren't as lucky.

The Jolie Gene

Google 'BRCA' or 'breast cancer gene' and you'll undoubtedly find hundreds of articles on Angelina Jolie. I love Angelina and admire greatly what she has done to raise awareness. She's gorgeous, strong and positive but she's hardly someone you can call up for a chat and discuss her fears about Brad seeing her post-mastectomy body. That's one of the reasons why I'm writing this blog.

I hope that by putting my feelings, thoughts and fears out there I help someone else going through the same thing. I'm 27, I'm a bit vain, I have a good career, I'm in a very new relationship, I'm worried what I'll look like in a bikini after my surgery, will it affect my sex-life, will today be the day I feel a lump, will I still feel feminine? I don't have all the answers but if my blog brings a smile to just one person going through something similar then that would make me so happy.

Fight like a girl

Nearly a year on from my news and I'm actually feeling very positive. 1000 women a month die from breast cancer in the UK alone and I'm very lucky that I have been given this warning. I have a choice to save my life before I'm even diagnosed and for that reason I will be undergoing a full double mastectomy in around 6 months time.

Cancer is such a horrible spiteful illness and makes us all feel powerless. The fact that I have a choice makes me feel so empowered. I'm one of the lucky ones and I'm going to fight this like a girl.