Tuesday, 9 December 2008

Genetic Counselling

When I was 11, just after I started secondary school, I was leaving one class on my way to another when the Head of English came up to me. I had never spoken to him before in my life and he was a big intimidating man.

In the corridor, surrounded by hundreds of other girls running between classes he said. "I've been looking at your work and I think you are dyslexic." I'd never heard this word before, when I asked him what it was he said. "Oh, its a mental disorder when you brain and your hand don't quite match up so you make mistakes."

He left with me thinking what the fuck? (Yes, I was an accomplished swearer even back then). I was convinced I was an imbecile and that something was seriously wrong, I pretty much went into shock and I spent the rest of the day in tears until someone with a bit more tact and understanding sat me down and explained exactly what it meant.

My reaction to my Doctor's phone call saying they had found abnormal cells in the womb biopsy following the hysteroscopy (HSG) was the same. I regressed to being that scared, confused 11 year old. The fact that she used the word cancer (admittedly to say this wasn't normally cancerous) sent me into a flurry of panic. Combine that with the difficulties I had picking up the prescription, the confusion and the delay that was being caused, I was in a pretty bad state by the I got to speak to the Doctor face to face. The full story is here.

Rather than admit that I might be a quivering, tearful wreck because of the insensitive nature of the way she had broken the news, and the issues I had getting a straight answer out of anyone, my Doctor decided the problem was that I was teetering on the edge of depression and so signed me up for both genetics counselling (to assess my risk of breast cancer in light of my mothers death) and infertility counselling. Because its all about me, she couldn't take credit for the tears.

Today was the genetic counselling to determine how at risk I was of getting breast cancer. I took the two other folk who had a vested interest in this, my sisters (oh and the two week old baby cause apparently he couldn't entertain himself in the waiting room).

It was pretty frustrating. The Doctor went through our family history and concluded that we had a moderate risk of breast cancer because my mother was the only woman in her family who got it at a young age. What this didn't take into account was my mother was one of five children and the only girl. Her brother's kids are all at least 7 years younger than us, the generation above was so close-lipped about things like illness that we don't actually know if any of them had cancer and again in that generation there were 3 boys and just one girl.

Add that to the fact that my mother was the epitome of healthy living, she didn't smoke, was teetotal, was slim, sporty and ate a healthy fruit and veg filled diet. So it wasn't those factors that contributed to her getting the disease.

However, the doctor decided that as we were moderate risk we wouldn't be eligible for screening until we were 40. "Even though Mum was first diagnosed at 37" challenged my big sister. Yes, apparently so.

So not all fun and games. Although there were a few good moments:
  • The wombmate (the clinical psychologist) said at one point. "So I've read the nice report about breast cancer..." The nice report I cringed, don't patronise the Doctor. Turns out she meant NICE (The National Institute for Clinical Excellence) report.
  • The doctor asked whether we self-checked our breasts, I said I did and the husband helped. I probably shouldn't have said that out loud.
  • The Doctor said that oestrogen could raise our risk. I couldn't remember if the Provera I am taking was oestrogen or progesterone, as I wondered this outloud both the Doctor and the wombmate automatically reached for the manual of drugs and their side effects. The Doctor got there first and defiantly snatched it away. (Its progesterone by the way)
  • It was at this point the Doc asked the wombmate what she did for a living, maybe I'm imagining it but I thought he became a bit less condescending when he realised she knew a little bit about medical matters.
So we left not really believing that we are at moderate risk, but each has their homework. The wombmate is going to see if there are any research projects we can join, the big sister is to delve a bit more into our family history - our great-grandmother died very young but no one (including her son, our grandpa) knows what she died of. And I? Well, I have the other counselling session next week, this time for the husband and I to discover how we are coping with this whole infertility gubbins. The sisters thought this was enough just now.



11 comments:

  1. I hope you guys (or girls, actually) are able to get screened early. I'm surprised that they wouldn't do that as a precautionary measure. At least there are three of you to work on it. And lots of luck with the infertility counseling. They may not know what they are getting themselves into! ;)

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  2. I don't get things like this, why would they even take a chance?

    You should be screened and that should be the end of it surely? Wasters.

    I am VERY interested in what you both make of the other counseling.

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  3. Cheers Lea, yeah they don't know the power of the sisters!

    X, I couldn't agree more. And don't you fear I'm sure I'll divulge all after the counselling next Thursday.

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  4. THIS Thursday or NEXT Thursday?

    So can I say, C U Next Thursday?

    (the word verification is 'tostors', that's funny, not sure why)

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  5. Oh, I always get confused about this or next. But next week, the 18th.

    I think touche would have been better.

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  6. I personally loved your comment about your husband's assistance. Nice way to break things up a bit.

    Very interested to hear how things go on the 18th. Keep us posted!

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  7. I came up with exactly the same thing over the issue of screening - even though my mum was first diagnosed when she was 37, they will not screen me until I'm 40. Good old NHS, eh?!?

    I hope that your other counselling session proves more productive.

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  8. Thanks Leslie, and yes I'll be back with a counselling part 2.

    Hi Ms Heathen, thanks for commenting I hope things are a bit calmer with the end of term insight (or is this the mad rush before the end?) Yes there isn't much room for movement in the NHS - the arbitrary age of 40 is set, so we have to deal with it.

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  9. Bloody hell. Doctors.

    My mother developed breast cancer at 40 (luckily, they got it early, and she's fine now, if somewhat scarred). But as none of her sisters have got it, we're considered to be low risk. Even though her father, her aunt, and her great-grandmother all relatively young of cancer.

    Needless to say, I am an obsessive lump-hunter.

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  10. Good luck with the counseling.

    I HATE when doctors or insurance agencies (or the NIH... is that right) take YOUR health into their hands based on vague statistics. Pisses me the HELL OFF. I feel like if you want to know if you are likely to get breast cancer, than you should damn well be tested for it!!!

    And by the way.. women with IF related hormone issues often have too much estrogen. I always have felt better on progesterone, and I think that may be partly why.

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  11. oops. NHS. sorry... tired and not willing to do checks.

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I've resisted word verification for ages but I'm getting so many spam comments at the moment that I think it is time. Sorry!