Genetics and the family tree
Because I'm apparently twelve years old, the title of "genetics counselor" makes me giggle. I can't help but imagine myself sobbing against someone's shoulder, wailing, "Oh, why are my eyes green? Why couldn't they be blue like my brother and sister? Please tell me why I must shoulder this burden alone!"
Yeah, okay. Anyway.
I called the genetic counseling department this morning, to schedule an appointment. They were happy to set something up…for 9th…of MAY. That's five weeks away! I want to be done with surgery before then. I don’t mean to be impatient, but over a month away is not okay with me. After talking with the scheduler a bit and letting her know that the surgeon wanted this information soon, she decided to check with one of the counselors. Luckily, the genetic counselor said she could see me this Wednesday, before my appointment with the surgeon.
WHEW!
For all I know, my surgeon might have been fine waiting another month (I really don't know) but I wouldn't be.
The person who set up the appointment also faxed me a 22-page questionnaire that I need to fill out for the genetic counselor, so that she can evaluate my risk. It's a long questionnaire full of questions that are hard to answer.
Some of it's basic information. You know, contact info, my education, ethnicity, occupation, income (wait, is that genetic?), insurance, info on all my doctors, and so on. Then they want to know about my medical history in great detail, including my birth weight and length, current stats, my weight at age 18, whether my mother smoked or took DES, my history of medical problems, anything I took medication for (and how much and how long), surgeries, broken bones, past gastro-intestinal examinations and the result. But we're not even halfway through. They also ask about skin cancer risk, like how many moles I have, how many blistering sunburns before age 20, my UV tanning bed history and so on. They ask about alcohol consumption, smoking, drug use, coffee consumption, diet and exercise, mammograms, menstrual cycle, birth control, everywhere I've lived for 3 years or more and how much exposure I've had to known carcinogens like asphalt.
That's not the hard part, though. The challenge is the family history, because it's a case of "I don't know what I don't know." For each family member they want to know their full name, birth date, current age or age at death, year of death, cancer diagnosis (yes/no), cancer organ, and if female, what age their ovaries were removed if at all. Can you answer that for all of your relatives? Didn't think so!
To fill out the family history, I had to go through the records in my garage, call my aunt in Massachusetts to find out what she knew (that was nice; I haven't talked to her in years), and belatedly remember to check the data in my Family Tree Maker software. Being an organized person is very useful, but you would be surprised to find out how often I FORGET what I've organized. I found that the record I created in 1998 had notes about medical history for a number of relatives…something I only vaguely remember doing! It would have been handy to remember that a little earlier in the day.
So, at this point I just need one more piece of info and I'm done. On the request for pre-authorization form, I have to check whether my cancer is invasive or non-invasive, and no one mentioned that. I assume invasive because (1) that's more common (80%) and (2) they are going to check my lymph nodes for cancer, and why would they do that if it was contained? But I'll ask the surgeon on Wednesday, anyway.
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