1st Entry... A little info...

8 minute read time.

My story so far….

I found out on 11th February 2013 that I am a BRCA1 carrier.  Truth be told, I wasn’t sure what to think… “Did this mean I was going to die?” was probably the first thought that went through my head, for some random reason.   I have a strong family history of cancer, breast and ovarian.  My mum was diagnosed at 31 and died at 36, as did her mum.  At the age of 29, I made the decision last November to find out if I was a carrier.  It was really Michelle Heaton (from Liberty x fame) who inspired me to find out – her story hit home, and to be honest, I hadn’t really thought about it until then.  I was a young naïve woman who always thought “well if it happens, it happens”. 

Reading about Michelle’s story, made me think about Cancer and how it had affected me, my family and others around me. So many people are affected by this horrible, nasty, disease.  My first meeting with genetics was in November/December of 2012.  Even then I don’t think I fully understood what it all meant – it was all too much to take in.  The blood test happened in January, after lengthy discussions with my Genetics Counsellor.  And on 11th February I found out that I was a carrier. 

I recall sitting in the room, with my sister, being shown the sheet of paper, which held details of how my life was ultimately gong to change forever.  The words “you are a BRCA1 carrier” hit me like a brick.  After that I don’t remember much apart from words like “mastectomy”, “reconstruction”, “breast tissue” …. All these words which meant nothing to me, but now, they are my life.  I heard them talking about hyterectomy and freezing eggs.... i wasnt ready to deal with ovarian risk as well. 

I was in a daze afterwards.  I went back to work (I happen to work in the hospital).  I took a couple days off after.  However it hit me, bad.  I went to my GP and was signed off for 2 weeks.  I couldn’t get my head round anything.  It was just all a mess.  I couldn’t understand what I was meant to do, or think.  Family and friends were great, but I found myself being distant.  I lost all interest in everything.  Things that normally excited me – drinking with friends, my dogs, hill walking, even speaking to people – I just couldn’t be bothered with.  People started to irritate me more than usual. I felt like I had lost “me”.  Of course, the GP told me this was natural after having found out such news, and with a lot to deal with I should take all the time I need , so I was signed off for another 2 weeks. 

I found it hard to function to be honest.  I didn’t realise it would hit me so bad.  I think the only person I wanted to talk to was my Mum and she obviously wasn’t around, but she would know exactly what I was going through. So my feelings of grief for my mum started to come through. 

I had regular contact with my Counsellor, who was great, it was always good to talk to someone who wasn’t a friend or relative and you could be completely honest with.  However gradually I became better.  I was coping better.  I eventually went back to work after 3 and a half weeks off.  It was enough time to get my head round things and start to cope better. 

I began to think rationally and realistically about my options – double mastectomy and reconstruction or not.  For me, it was a no brainer.  At the age of 29 I wanted to prolong my life.  I couldn’t bear living with the thought that I had a 87% chance of developing the disease.  And with my family history, it was pretty much inevitable that it would happen. 

Maybe it was a reaction to my “news” but I made a complaint to NHS Tayside regarding the way I had been treated.  To cut a long story short, when I met with my breast surgeon on 27th march, she was unable to answer any questions and was extremely rude; her manner was not what I would expect from someone in her position.  Plus I felt I had been passed pillar to post and had no point of contact to ask any questions – which I had millions of! Subsequently from my complaint I was given an appointment with a Breast Nurse Specialist – something which I wouldn’t get until AFTER id met with all consultants, despite being told they knew “all the answers”.  Anyway, the nurse was very helpful, talked through everything possible relating to my decision to have a double mastectomy, I felt she knew exactly what I was thinking, she had all the answers.  

I didn’t meet with my Plastic Surgeon until the 20th May.  Time seemed to drag. I felt nothing was moving.  Meeting with the surgeon went well – I felt at ease and had heard so much about him that I was confident with him doing my surgery.  It was a bit weird having my boobs hanging (and I mean to use that word… 36FFs aren’t perky!) out in front of a room of strangers, but I realised that this was probably going to become “the norm” for me. 

One of the things that I try to focus on is the “new boobs” that I will have.  “Operation New boobs” is now what I refer to this as.  It is so scary thinking about how big the operation is and I try not to think much about it being a mastectomy, rather a “boob job”.  People wake up from boob job ops most of the time, right?? It may sound immature or naïve but at my age, this is what goes through your mind I guess.  I’m only just 30 and I am currently single so the issues surrounding body image are still at the forefront of my mind.  I never thought of myself as “vain” but in this instance I suppose I am. 

It was only at the end of May that I saw my Breast Nurse where we looked through surgery photographs, and to be honest, I’m not going to beat around the bush here, they didn’t fill me with lots of hope that mine would look amazing like I envisaged.   We discussed the types of implants (I wanted to go smaller, to a DD) and the nurse was unable to tell me whether the surgeon would want to use normal implants or expanders.  I hoped and prayed that it was going to be normal ones, and two weeks later she confirmed that it would be.  I was over the moon! AND this was me finally on the waiting list for surgery. 

It was at this point that I was told that I could wait up to a year for the surgery.  Bit of a shock, but due to the way I felt I had been treated, I wasn’t surprised.  I just couldn’t shift the feeling of not being able to plan for the months ahead.  With myself and all my friends turning 30 this year we all wanted to plan something to mark it, together, clearly this wouldn’t be an option for me now as I couldn’t risk losing money.  Every time I received an invitation to a wedding or party, I always wondered if I would make it.  It was a pain the ass to be honest. 

I had to have an MRI scan.  This was absolutely petrifying.  I had one originally scheduled for the 15th May, which I attended.  However, I must have got myself so worked up about it that whilst the Nurse inserted the needle for the dye; I fainted, woke up and vomited! Always a drama!! To be honest, before I was taken in, 2 women had walked past me, both clearly having had chemotherapy as they both had no hair.  I think this is when I realised how serious this was.  If I didn’t go ahead with surgery, that could be me.  Whilst I waited on the Nurse I thought about how lucky I was that this was PREVENTATIVE and unfortunately there are people who never get that chance.  Anyway, another MRI was arranged and it was an experience that I NEVER ever want to repeat.  All I kept thinking was “what if something shows up in the results”.  I sweated and twitched so much lying face down with my both boobs in “baskets”, attractive.  The noise of the machine still stays with me. 

However I began to get my life on track again.  And on Monday 15th July I received a letter to say that I had a date for my surgery – August 22nd.  I was in complete shock.  My first initial thought was that they must have this wrong, how can it be so soon?! I could feel my heart pumping right through my chest as I read the letter.  One part of me is looking forward to the operation, if that’s the right phrase to use, but the other part is undoubtedly petrified.  One greatest fear is not waking up after the operation.   I suppose the other is that I never fully “connect” with my new boobs – will they feel like me? Will they look like me? How will I feel? Will it all hit me after the operation? My mind is clearly all over the place still.  I suppose I’ve just learnt how to deal with it all perhaps. 

Anonymous
  • FormerMember
    FormerMember

    Hi,

     

    My name is Steph, I also have the brca1 gene but with no family history at all. The hospital referred me to the genetics people at Addenbrookes after I was diagnosed last September with stage 4 ovarian cancer. I was 33 at the time, incredibly young for this disease apparently. I am now in remission but for how long, nobody knows. I have been offered the selective mastectomy and immediate reconstruction. I saw a specialist on Friday and am now waiting for an appointment to see a surgeon. Like you said it is a no brainer really, even though I have been told the oc will come back I have been through every op and procedure to give me as much time as possible, so to be told I could also get breast cancer as well was scary stuff and I think I kind of went into autopilot and just wanted rid of them, I'm not big chested anyway so I am kind of looking at it in a good way. I am panicking enough about the oc recurring, so having a mastectomy will eliminate the added worry that would of caused. I am keen for the op to hurry up as I have been pulled around and operated on for the last year and I want it all over and done with so I can get on with my life again while I can. I have 4 children as well and I feel I am missing out on so much with them as I feel tired and worn out so easily. I thought as soon as the cancer was gone that would be that and I could get back to normal, how very wrong I was, I don't feel like my life will ever be the same again and that makes me very sad and depressed.

     

    Sorry about the long rant but just to let you know you aren't alone and I understand every word you wrote as I am feeling exactly the same way.

     

    Take care

     

    Steph x