Poking and prodding

[trixtah]

Part of the reason last week was so speshul for me was that I went to get my lovely lady parts checked up by the doctor. Possibly not the best time to do it, but it was a bit overdue, and I specifically wanted to get screened for HPV, and get the vaccine if I'm negative (the vaccine only covers a few HPV strains, but vaccinating against some of the more virulent kind is better than nothing, and it would be really annoying to develop cervical cancer later on if I was clear up to now). The doc reckons my risk is low - his method of asking was, "Has there ever been PEEN in here?", heh, and while there has, there hasn't been much - but it's good to know one way or the other.

The other thing I wanted to find out about was getting a genetic test for the two genes that have been associated with increased risk of breast cancer (BRCA1 and BRCA2). My mother's sister has had breast cancer twice, when she was under 50, and my grandmother died of cancer (I don't know where it started, but she was apparently riddled with it when she died). And, of course, I don't know anything about my paternal side. This puts me in either a "moderately increased" or "high risk" category. I need to find out what kind of cancer my grandmother died of.

The doctor would have been delighted to refer me for it, but it would cost up to $3000. Fucking jesus christ hell. He says that while most genetic testing comes in at less than $200, the BRCA test has not reduced in price since it was first developed. I bumped into saluqi at lunchtime afterwards and grizzled about this fact, and she observed that it's probably due to the procedure still being patented. Of course, and if I hadn't been so discombulated by the morning's events, I might have twigged myself.

Now, on doing some research, it turns out the licencee of the BRCA tests (licensed from Myriad Technologies in the US) in Australia and NZ, GTG Technologies, was planning to assert its patent rights, but backed down because of the uproar that took place over it. Prices still haven't dropped, though. And this epitomises what is fucked up about the patent system. I certainly understand granting a patent for developing a new genetic assay method (although I think 20 years is excessive - 10 would be more than enough). What I strongly disagree with is patenting a diagnostic system based on a specific gene (or set of genes). They didn't invent the fucking genes, and any genetic researcher, on knowing the association, would be able to test for exactly the same thing. It's like patenting a business method, or thought process, neither of which are legally patentable in many jurisdictions. Or software patents, but we won't get into that one (because I naturally disagree with such things - should I patent every regular expression I write to filter a log?) What's even more galling is that in Europe, the patent for the BRCA1 test was revoked years ago by the EU Patent Office.

So, what does this all mean for me? If I was an Ashkenazi Jew, there would be no question of my running into the genetic testing clinic and demanding a test. Of course, I don't know what half my family background is. The other thing is that 8% of women will develop breast cancer in their lifetimes, but only 0.4% of women will develop a breast cancer associated with either of the BRCA genes (I don't know how much that number will change as more women get genetically tested - I don't even know if it's routine these days for any women with breast cancer). So what I'll do is find out from my mother what kind of cancer my grandmother died of, and ask my aunt whether she was ever genetically tested after developing breast cancer in both breasts. And maybe during the next few years, the price of the test will reduce.

If I did have such a test, and it was found to be postive for either of the mutated genes, I think I'd have prophylactic surgery. I initally thought that such a measure was pretty extreme, but I'm not exactly attached to my breasts (although I feel fonder of them than I used to), and better to get rid of most of them before trouble arises. Well, we'll see - I'm not exactly looking forward to either of those conversations with my mother or my auntie.

Comments

[jekni.livejournal.com]

How do I tell what type of Jew I am though? And why is Ashkenazi different from Sephardi in a medical sense? Is this something I should be really concerned about? Not many of my mother's family are still alive so I'm not sure how to find out either way. I feel there are some rather large holes in my family history that I ought to do something about.

Bugger about the cost of the tests though. I agree with your point about the patents, too.

[trixtah.livejournal.com]

Ashkenazi Jews are the ones who mostly spread from Germany east into Russia (and also into Western Europe) and from there to the US. So did your mother's family speak Yiddish or Russian, Polish, etc, or originate from those places? The Sephardic kind really just originate from Spain and Portugal, and settled around the Mediterranean, in places like Morocco, Egypt and Turkey.

Perhaps it's about what populations they intermingled with? The Spanish and Portuguese have higher proportions of blood type A compared to northern Europeans, for example.

And I really should have said that with my family history and if I had Ashkenazi ancestry, I'd be having that more thoroughly investigated. This not having a clue what my father is can be somewhat frustrating!

[lederhosen.livejournal.com]

If your Jewish ancestry goes back to non-Mediterranean Europe, you're probably Ashkenazi. AFAIK, because Ashkenazi Jews tended to marry amongst themselves, they have higher than normal rates of BRCA1/2 and some other medical problems associated with recessive genes. (I wouldn't be surprised if Ashkenazis also had lower than normal rates of some other things - genetic epidemiology is a lot more complicated than 'intermarriage bad' - but maybe that isn't as newsworthy.)

[aquaeri.livejournal.com]

They're different groups of people (living in Eastern Europe vs the Mediterranean, as others have noted) and due to a mixture of maybe marrying locals, and just random chance over many years, they end up with different average genetic profiles.

There are a number of other genes that are measurably more or less common among different European groups. I myself am Scandinavian and a carrier of haemochromatosis, which in fact is most common in Northern Europe.

[lederhosen.livejournal.com]

You can't get HPV from hot girl-on-girl action? I'm a bit surprised, given how easily it spreads otherwise.

Good luck with the genetic testing. My mother forked out for those tests, but apparently whatever her family has isn't BRCA1/2, so no way of telling whether my brother and I are carriers :-/

[trixtah.livejournal.com]

Yep, g/g seXXXors is lower risk, for some reason. Maybe because we do less penetration over all in comparison? Or less sex in general?

Anyway, the average prevalence of HPV in women in the US between 14 and 59 is around 27% (http://jama.ama-assn.org/cgi/content/abstract/297/8/813). Prevalance in lesbians, according to this study (http://www.ncbi.nlm.nih.gov/pubmed/11392939?dopt=Abstract), was only 13%, and even less in those who had never had sex with men.

However, I have had more partners than most women, and certainly most lesbians, not to mention the PEEN, so I don't think I'm immune.

[ilikerivers.livejournal.com]

My doctor said if me and my partner hadn't had sex with any peen we wouldn't have to have as many pap smears (if at all) and she also said that after my next one I can take longer between smears assuming mine stay normal (and my partners do too). Damn peen past!

I don't want to get gardasil regardless, partly due to how it was marketed and I've looked into the pros and cons for me and I just don't want it. I think if there was a lot of cervical cancer in my family that I might feel differently.

That is SO evil that that kind of test is allowed to be patented. It could save people's lives.

Do you have to have breast scans with your family history? Hopefully they can do something to ensure you stay healthy and cancer-free.

[trixtah.livejournal.com]

I think your doctor is not really giving good advice with the potential for "no pap smears at all" with regard to no peen. Even nuns who have never had sex with anyone still get cervical cancer, albeit at much reduced rates. There's that 13% of lesbians who have HPV (http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1446473) in one study, and women who have never had sex with men still have a rate of about half that (those women may have had the bad luck to catch it from another woman).

I suppose one advantage of not having a TV is that I've never seen any Gardasil marketing. I can't see any cons with getting it done at present (I'm not a fan of vaccinations in general, but for a virus that can cause cancer rather than a temporary illness, I think it's worthwhile).

And I totally think that kind of patenting is evil. I mean, seriously. :-(

Regarding screening for breast cancer, I've had an ultrasound that found nothing, and these days MRIs are being increasingly recommended. Of course, they cost about 6 zillion times the cost of mammograms (but I'm not having x-rays shot at my tits for as long as I can possibly avoid it).

[lederhosen.livejournal.com]

BTW, your 'Fit and Well' (HCF magazine) just showed up. Did you want it?

[trixtah.livejournal.com]

Ick, I didn't even know they sent out a magazine. Please toss it in the recycling, and that's another address I must change! :-)

[aquaeri.livejournal.com]

Yes, I have a lot of strong angry thoughts about genetics and patenting.

[trixtah.livejournal.com]

I'm not surprised; it's really fucking offensive, on a number of levels.