People will stare, make it worth their while.

A Surgical Tale Part 2: Genetic Risk

May 14, 2017

Boobs, we’ve all got them, or had them at some point in our lives and most of us have a love, hate relationship with them.  Personally I have a hate, hate relationship with mine, mainly because of the strife they’ve caused me over the years.  Here’s a little more of the story following on from Part 1, and before Parts 3 & 4

I had my first breast lump removed at age 19.  I remember being told I’d need to have a procedure and it not quite making sense to me, the whole thing was booked and actioned before I’d had time to even process it.  I kept it secret, looking back now, I think it was out of embarrassment, the procedure was scheduled whilst my mum was on vacation so I went in to hospital alone and came home alone.  I’m not sure I actually processed the whole thing at all, it was like something I erased from my memory, that is until it happened again when I was 21.  This time I was more fearless, more independent, I lived alone and was determined to make this a small thing, to go into hospital for a simple lumpectomy and return home as if nothing had happened – and that’s exactly what I did.  To this day, I’ve never talked about it or thought about it much for that matter.

When something likes that happens to you and you’re young, it’s very easy to erase it from your memory and act like it didn’t ever happen, save for the physical scars.  It’s even easier when it’s an unknown entity, something that nobody knows about, it’s easy to fool yourself into believing that everything was fine.

Then in 2011 I found myself in the same position for a third time yet weirdly wanting to approach it in exactly the same way.  The fact that this time around I’m married with a child meant that was practically impossible to do that, and with a predisposition for breast cancer in my maternal family I wondered whether I should may be be a bit more open about the whole situation.  With years passing in between treatments and advancements in medical technology, my GP advised that with the risk of breast cancer so high it would be appropriate to make a referral into the Northern Genetics team at The Centre for Life in Newcastle – we have history, they’re not just a genetics centre, they’re THE genetics centre, made up of the UK’s leading Geneticists.

So, long story short and a string of appointments later, I was identified as a candidate to be assessed for the BRCA 1 / BRCA 2 mutated gene which can be responsible for various cancers occurring in women including hereditary breast cancer.  The sticking point is, contrary to what the media would have you believe, it’s actually impossible to test for these genes, without a living relative carrier whose gene has mutated into the cancer that you’re at risk of, and has not yet been treated for it.  Got that?  In order for me to have a test to evidence whether I have the faulty gene, a relative of mine, on my maternal side, within three generations, must be alive but living with the cancer which the faulty gene has mutated into.  Those medical advancements weren’t all that after all.

I threw everything I could find at the Geneticist, Angelina Jolie, Michelle Heaton, some vague form of science related to the mutated genes my son possesses, none of which stuck.  This woman shattered the bubble for me there and then when she told me that celebrities who claim to have had their breasts removed to beat the risk and follow up with breast implants in order to ‘maintain their femininity’ (her air quotes, not mine), are sham artists.  SHATTER, that was the glass breaking for me.  Basically, if a celebrity wants a boob job without the attached stigma, then play the BRCA1 card – I was told this at every appointment I went to within the Genetics Unit, every, single, time.

Now I do have a living relative who fits the criteria and is known to the service but for whatever reason, she didn’t want to share her record for comparison, leading me to find myself stuck between a rock and a shitty stick – that’s the saying right?  So, after what felt like a million appointments, various specialists looking over my medical history and questions that would appear to bear no relevance to anything medical, a decision was made for me to have another lumpectomy, but I agreed to give precautionary bi-lateral biopsies for record incase they were required for other family members to benchmark against in the future if needed.

I was in hospital having surgery within a week, and home within two days but in compression for 6 weeks.  I’ll keep it short or this post will become a novel and I don’t have any pictures to pretty it up, but basically, you aren’t warned in advance that with NHS treatment leaving you in a presentable state following surgery isn’t a top priority, talk about a hack job, a trip to the local butcher would see you in better stead.  I looked like I’d been turned inside out and then set on fire.  The surgeon told me that because my breasts are small and there’s less actual breast tissue, the biopsy needed to be bigger to make sure it was a ‘viable sample’.  So I had biopsies taken from both breasts and a lump removed from one which they said was ‘bigger then expected’ from the scan result.  The scarring seemed excessive, and unnecessary, I stared and stared and couldn’t understand why so many cuts would ever have needed to be made.

I spent the next three months asking any medical professional who would listen for advice on how to fix the issue, they couldn’t possibly leave me in this state could they?  Because of nerve damage to one side I had a recurring electric shock feeling down my left arm but was told that because any further treatment would improve the look aesthetically, it would need to be delivered privately by a cosmetic surgeon as the procedure would not be funded by the Clinical Commissioning Group (CCG).  I’m not averse to paying for treatment, but when somebody else fucked up, it stings a bit when the responsibility for that is passed on to the person who got fucked.

Months of appealing and writing countless letters to a whole variety of people, who just didn’t want to know, ensued and in the end I chatted with a surgeon friend of ours who took one look and said there was no real way of doing a ‘simple patch job’ but that if I wanted to do the breast lift we’d previously discussed, that would cut out a section of the scarring completely, but bring with it a set of new scars.

Fuck.  Another breast procedure.  Funny, this time it sunk in right away.


Click here for Part 3


One response to “A Surgical Tale Part 2: Genetic Risk”

  1. Gillian Sloss says:

    I am so interested to read this blog since my own family has a ‘massive’ predisposition to many cancers, one of which is breast cancer and two of my four sisters have already gone through breast cancer treatment. I did some digging of my own within the extended family and it was shocking to discover how many relatives had been stricken by this awful disease. My sisters and I (scattered across the U.K.) all armed with our family history of cancer were seen by the genetics teams in our own area, one of which was in Newcastle. Like you, we were told that you would have to have a living relative who was diagnosed and tested for the BRAC1 and 2 genes. For whatever reason, my eldest sister was not tested for this gene which shocks me to the core as her cancer was quite aggressive. My other sister was told she did not carry the mutant gene. My genetics counsellor told me at the initial meeting that they are certain that many of the different types of cancers are linked in some way. For instance, if your father or grandfather had prostate cancer, then you and your sisters would be at higher risk from breast cancer and your brother would be at risk from prostate cancer since the two are linked. Well the same goes for other types of cancers apparently but they are still on the cusp of discovering which cancers are linked to one another.

    I wish you all the very best Pixie with your recovery and your cosmetic surgery to rectify the butchers job previously performed. You’d think these surgeons would be a little more attentive to our assets for goodness sake!!

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