Wednesday, February 3, 2016

Genetic Counseling for the Donor Conceived

I'm getting to the point where I'm posting enough stuff my half-siblings know that, if they stumbled across this blog for whatever reason, they would be able to identify me.  This makes me nervous, but not nervous enough to stop posting.  Obviously.

My half-brother Hans emailed me the other day to say our uncle had tested positive for some sort of mutation that puts people at higher risk for specific types of cancer.  He said our father had asked him to let me know in case I wanted to get myself or my daughter tested.  Below Hans' note was a series of emails between my biological father and my uncle's wife.  She had the job of informing my uncle's family members that they might want to get tested.  There was a limited amount of information exchanged.  The emails were from several months ago, but the dates showed my biological father just had forwarded them to Hans to forward to me this week.  It reminded me vaguely of how people who find out they have an STD are supposed to reach out to everyone they've been intimate with.  "Hey, it's Joseph.  Yeah, the Joseph who sired you about 30 years ago.  Good times, huh?  So anyway, I tested positive, and it turns out you might want to get yourself tested too..."  I wish I had more known half-siblings, just to add to the comic effect.

I had a check up scheduled with my doctor for just a few days later, so I brought a print-out of the email chain to my appointment and asked my doctor what he thought of genetic testing.  I'd assumed he would say there wasn't much point in it if I'm not planning to have more kids and there is nothing actionable I can do with the results anyway.  When I'd brought up prenatal testing before conceiving my daughter, my OB/GYN at the time had said, "What for?  If you don't even know your family medical history, how can we know what tests to run?"  I hadn't known who my biological father was back then or anything about his family medical history, but I thought there were standard tests doctors could run for common disorders. 

To my surprise, maybe because I have more family information now, my current doctor had a different reaction.  He referred me to a local cancer center that does genetic counseling and strongly recommended I do it.  He said that, while there isn't often something actionable to be done with a heightened cancer risk, there might be more screening options in the future, and the field of genetics is progressing constantly so it would be good to have my results on file.

I called the genetic counselor to make an appointment.  She asked me if I had a copy of my uncle's report because there was relevant information in it that they could use in testing me.  I told her I might be able to get a copy.  She stressed the importance of it until I finally explained that my biological father was an anonymous sperm donor and I'm still a secret to most of his family, said uncle probably included.  I told her I would ask my brother for the report, but I wasn't sure I could get it.  She told me it was okay.  While it's useful information and would inform what genetic tests would be done on me and would probably make my testing cheaper, they can work without it. 

Then she asked me to compile a list of every  member of my extended family who has had cancer too, as well as which type of cancer and at what age it developed.  I know some of that.  I know what I know anyway.  I don't know when their various cancers developed, but I know they all died soon thereafter or as a result of the cancer, and I know when they died, so surely that counts for something.  My information isn't lacking enough that I would try to ask for more anyway.  Most of the cancer in my family is on my father's side.  All of the "lady cancers" are, and those are the ones whose risk are heightened the most dramatically by this particular gene mutation.

I told my brother thank you for the information and thank you when he got me the extra pages from our uncle's report.  He's always very prompt in his replies.  I didn't mention that I already have heightened risk for colon cancer, which I inherited from our father's genes, in spite of our father pointing out in the email chain that he thinks he got "the good genes" because he hasn't yet had the same colon issues his brother or mother have had.  I'm not going to tell any of them the results of my genetics testing either, both because I don't think they want to know and also because I want to have information they don't have for a change.  I'm not mad at my half-siblings.  They are nice and kind to me, but I'm angry at my father every time I remember he exists, not just for this.  I get so angry when I think of him that I often cry in impotent rage, and I don't want anyone in his family to know that.  I want them to think I'm calmer and cooler than them, as I've always pretended to be.  I do not want them thinking I'm irrational and ungrateful or expecting too much.  I will take what I can get.  I will take months' old forwarded emails indicating that my daughter and I might want to get ourselves checked out for new and exotic cancer risks, carefully funneled through a third party so that I don't dare take liberties with my father by responding to him directly.  I know I have more than most DC people already.  But I'm still angry.  

Bright Side:  At least it's not ALS.  I scoured my raw genome data from 23andMe, and I'm definitely not getting ALS.

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