Interlude: The ‘Jolie’ effect and decisions…

So much has been written about Angelina Jolie & what will be known as the ‘Jolie effect’ (remember the ‘Kylie effect’?) and her decision regarding the BRAC gene that I feel the need to put my ‘two penneth’ out here..   Most people who have experienced breast cancer will agree with what she has done, especially bringing awareness of reconstruction and genetic testing to the forefront is just what was needed.

My daughter was 5 months old, my son was only 2.5 yrs when I was diagnosed. I’ve lost out enjoying my time as a mum and with my new daughter and young son.  Our family has lost out to enjoying what was supposed to be a fantastic chapter of our lives moving house to a new village with a new house and a new baby on the way. Breast cancer took my dreams away from me & I’ve found it hard to get them back. I look to the future but worry about it immensely.

I don’t always think people realise what cancer takes away from you when you are diagnosed and that to me is the issue.  Preventative surgery and having a choice to bypass that and live your life, to live it ‘more’ carefree and not spend days, weeks, months, years worrying that it might return. It’s always there, maybe not always consciously but definitely subconsciously.  I see it every day if I choose to look in the mirror but I don’t always do this. That is what cancer has took away from me.  My freedom, I feel a prisoner to it, it’s a life sentence.  Every time I go to hospital appointments, the fear is there.  In a split second your world could fall apart again.  I’m very fearful of that.

So as per recent reports, younger women are opting for double mastectomies and there is a rise in general for double mastectomies. This of course is also going to be fuelled by the BRCA gene testing.  When I had my reconstruction surgery, a few days after I mentioned to my breast care nurse, who came to visit me, that I wished I would have had my other breast removed at the same time, I should have had a double mastectomy.  Her reply was that ‘we would not remove a healthy breast’.  I understand that but 2 other factors you have to add into this decision is your mental health and the patients final outcome aesthetically. Psychologically and aesthetically I did feel, and have always felt, that I should have had the other breast removed.  I call my reconstructed breast VB (sorry Victoria..) as it will never slip under my arm when I’m lying down and it will never droop. It’s a perky 25 year old on a 44 year old body.  Granted, no one can tell with my bra on (not that I go round flashing them.. well not all the time) and the results have been excellent thanks to two great surgeons but aesthetically I have a real breast with a nipple on & then a reconstructed one without a nipple.  Even though I’ve had a nipple tattoo, it is not the same.  When I’m cold the effects are there for all to see… on ONE breast.  So I always have a padded bra or insert to cover my real nipple. It regularly stops me from wearing what I want.  I could never go bra less – NEVER  (don’t talk to me about no bra day!). It’s something I have to live with for the rest of my life.

My reconstructed breast in no way feels the same as a normal breast. I don’t actually sense it as much wearing a bra but take this off and I can feel it. The skin is dead, I cannot feel very much on the breast or on my back where the muscle, tissue and skin was taken to create my breast. Cold temperature and the fact I have a small implant also makes it colder than my real breast. The feeling on my breast and on my back hasn’t come back and unfortunately it will never come back now. Aesthetically, it would have been ‘easier’ (of course all surgery is hard and risky) in a ‘physical’ sense to have a double mastectomy with implants. To me this was an ‘easier to recover from’ operation and my breasts would always match.  My LD surgery was a huge surgery and I was operated on for 10 hours. The recovery is long and hard.  I knew I wouldn’t be able to hold or pickup my baby for a long time after surgery.   But, I wanted a realistic match with my other breast and that’s why went with it. So again, this is why a double mastectomy and reconstruction with implants would have been ‘easier’ surgery (for me) and less invasive to my family as a shorter recovery time compared to an LD flap.  Also, just as a thought, would a reconstruction with implants cost less for the NHS?  If the surgery takes less time then isn’t it more cost effective? I wonder if this may also fuel the Jolie effect in the UK from a surgeons perspective with NHS budgets to adhere to?

In effect what I’m saying is that I understand when women want a double mastectomy & reconstruction (or not) as it gives symmetry.  Breast cancer is hard enough with the surgeries, treatments and therapies you receive sometimes these surgeries last for a number of years.  I know this is not for everyone but for me if I could ‘look’ virtually the same as I did, then it helped with my self image and I felt able to cope with everything else I had thrown at me without feeling more depressed with my body image.

I know for a fact if I would have had genetic testing and the results said I should have a prophylactic mastectomy then I would have 100% gone ahead with it.  Who would put themselves and their family through the uncertainty of a breast cancer diagnosis and years of worry?  Walk in our shoes, then you may just understand…