A couple of people have sent me the link to Angelina Jolie’s piece in the New York Times on 14th May 2013 that talks about her decision to have a double mastectomy, the process of which started in February just like mine did. In her case, she has the BRCA1 gene and is able to quote her statistical likelihood of getting breast cancer being reduced from 87% to 5% by the action of having her breast tissue removed.

In a similar situation to me, with relatives that have already had breast cancer and some of whom died from it, she made the sensible decision with the help of her doctors.

Of course, I never thought that I would be comparing and likening Angelina Jolie with myself and finding such commonalities!

In her case, she has managed to salvage the nipples and she only has small scars which is pretty lucky. When I originally had my lumpectomy last year before my chemo, the surgeon cut a peephole in me by going around the areola edge – and did such a good job of getting the lump out and sewing me back up again that it was extremely difficult to tell that I’d even had an operation. I was amazed at the skill, and I must admit I did feel pretty lucky to have got away with just that!

I spoke to my consultant Dr Thomas after my chemo was complete; In those days and weeks where I’d been stuck at home having chemo and trying to concentrate on something, anything, I had been reading up on heredity of cancer genes in breast cancer. It led me to ask Dr T if I could hold off on having radiotherapy (which I wasn’t looking forward to) and instead, work out whether I in fact would be better off having a double mastectomy. In my case, he didn’t bat an eyelid because of my family history: My mum had breast cancer in 2006, my grandma on my dad’s side (and her twin) both died of breast cancer at my age, and there are also other cases of my cousins and great grandparents having breast cancer.

We agreed that actually, if I got the genetic test done, I may not need radiotherapy if all the tissue was to be removed anyway. And with the improvements in speed when you get tests done privately, I could have a result in as little as 3 weeks instead of 9 months or more on the NHS. (If I’d have been an NHS patient, the doctor wouldn’t have agreed to hold off on radiotherapy because of that time delay.) So without ado, I was sent along to a specialist consultant – Mr Mackay – at the London Breast Clinic in Harley Street in November last year. (ooh look at me with the Harley Street doctor!)

I sat there in the waiting room in Harley Street clutching a piece of paper with all of the family members who had had breast cancer listed out with birth and death dates and dates of diagnoses where available. That was thanks to my Mum, Dad and sister who had compiled it all so all I had to do was print it out! Again, I met and talked to Mr Mackay and he took one look at my family history and said he could tell without doing a blood test that there must be a hereditary element to breast cancer in my family. He mapped out the family tree diagram of all of the women, and then said that whilst it wasn’t necessary to have the genetic test, what it would do is potentially allow me more certainty in terms of statistical likelihood if there were a positive result on one of the genes that can be tested for.

That’s an important point, you see – at the moment it’s only really possible to test for 4 genes related to breast cancer – even though it’s thought there are tens of genes involved and they may all interact with each other in subtle ways. The the 2 main genes tested for now are BRCA1 and BRCA2. Mutations in the BRCA1 and BRCA2 genes make approximately equal contributions to early-onset breast cancer in Britain and account for a small proportion of the familial risk of breast cancer. (Source: Oxford Journals)

I made the decision as I sat in the consulting room in London that I would pay for the blood test. That test would prevent potentially unnecessary medical treatment for me also allow my cousins, sister, mother and so on to have the results in their hands within 3 weeks so that they could start their more lengthy process on the NHS. I went straight back to Bedford, got a nurse to collect the blood sample for me to send off in the special pack to the labs in Cambridge and put a cheque in the pack for £2000. The way I see it, is I don’t need to get a newer car for a while, but I do need important information about my health and the actions I might need to take to prevent me dying. As I could afford it, it was a no-brainer, wouldn’t you say?!

When the result came back that I was definitely BRCA2 positive, it was actually a relief. It would have been far worse to not have a conclusive result and whilst I probably would have still chosen to have the double mastectomy (other genes may cause the heredity) I was glad that there was certainty for my upcoming decision. It also made me think of a quote that used to be popular in school assemblies at CHS…

“Grant me the strength to accept the things I cannot change,
the courage to change the things I can,
and the wisdom to know the difference.”

I didn’t try to preserve my nipples; I’d already had breast cancer around one of the ducts so preserving the ducts and nipples wasn’t even an option for me. So in February, whilst Ms Jolie was undergoing her nipple preservation and expansion stuff, I had two eye-shaped holes drawn on me and that eye would be all the stuff that I would lose. My nipples got taken away along with all the breast tissue and then the two sides of the “open eye” shape that was left were then joined to form a fairly straight line slicing across each breast.

In total they removed 280ml of tissue. I only know this because my consultant, Mr Javaid told me so as he was filling my Becker implants up with saline on Monday in our third of such sessions. He noted that the implants are now filled with 280ml of saline meaning their volume matches the tissue taken away. He reckoned that I am now pretty much exactly the same size as I was before… actually in some ways I think I’m a better shape. To test that theory, I went to M&S yesterday to treat myself to some new lingerie, and got them to measure me up. (Well, you’ve got to, really, haven’t you!) 😉 I can pretty much wear anything, because unless the fabric is really sheer the scars are hidden.

One thing I haven’t got used to yet is how they feel. They are… how do I describe it? I appreciate that boobs come in all shapes and sizes, mine were small with a little wobble before, and now they are slightly bigger but with no wobble, which is a bit weird… it’s more like having big chest muscles than boobs. They are strange, and they also don’t generate heat like real boobs, so I wake up in the morning and these cold, miniature beach balls are there to greet me. I know that as the skin stretches a bit more they will hopefully gain some wobble, and since a lot of people complain that their boobs sag, I will concentrate on being grateful even though these things defy gravity in a slightly alien way!

My next appointment is in September; all being well that will be the session whereby Mr J will fashion me some fake nipples under local anesthetic. That’s going to be a weird one. Not sure I will be able to watch it without feeling a bit faint because it involves grabbing and twisting the skin to form a fake nipple, and possibly later, adding a tattoo to form the areola. It’s a longer more drawn-out process than I anticipated when I started in February… and by the time it’s over it will most likely be time for me to take the next leap into the unknown…

BRCA1 and BRCA2 both also influence the development of ovarian cancer, which is less treatable and carries a higher risk of death than breast cancer. So the question will be when, not if, I have an oopherectomy (ovary removal) operation. That’s something I am definitely not looking forward to, because at that point I will undergo an early menopause and all the associated problems including bone density loss etc etc. Of all the crap to deal with, that feels like it might become the hardest both physically and emotionally.

I wonder if Angelina will be joining me on that journey. For it, we’ll definitely need Strength, Courage and Wisdom.

Inside my head there lives a dream that I want to see in the sun
Behind my eyes there lives a me that I’ve been hiding for much too long
‘Cause I’ve been, too afraid to let it show
‘Cause I’m scared of the judgment that may follow
Always putting off my living for tomorrow

It’s time to step out on faith, I’ve gotta show my face
It’s been elusive for so long, but freedom is mine today
I’ve gotta step out on faith, It’s time to show my face
Procrastination had me down but look what I have found, I found

Strength, courage, and wisdom
And it’s been inside of me all along,
Strength, courage, and wisdom
Inside of me

Lyrics by India Arie from “Strength, Courage and Wisdom”