Preparing for the Appointment

12Jan10

I just scheduled my first appointment today with the cancer agency. I will be meeting with a genetic counsellor to discuss whether I want to be tested for a mutation in the breast cancer genes. Just two weeks from today. Things are moving forward and I am taking action. It feels great! Perhaps that sounds odd to others. But that’s where I am at. I’ve thought about this issue so much in the last couple months that I am glad I will soon be able to stop wondering and just deal with the facts.

I plan to go in with a list of questions. I thought initially it may be hard to think of questions since I have done so much reading on my own. But now I realize that there are all sorts of topics that I haven’t yet read up on. I already have several questions in my mind:

  • What type of genetic discrimination may I face if I am positive? Is there legal protection against genetic discrimination in Canada? Could the results of my test affect my ability to immigrate or get sponsored for a work visa in Canada? Is there any way to ensure my test results are not accessible to others?
  • Is it fair to assume that the risk of ovarian cancer for our family mutation is at the low end of the spectrum due to the lack of family history and position in the BRCA2 gene? Is it fair to assume the risk of breast cancer is at the high end of the spectrum for the aforementioned reasons? What other cancers are we at risk of?
  • If I tested positive, what would be the recommended screening procedures and preventive measures? Will all of these be covered under the provincial health care?
  • If I test true negative (since my mother is positive), will I indeed be considered normal risk? What are the screening recommendations for women of normal risk?
  • How long will it take to get the results? Who conducts the test? Who will have access to my case details?
  • Are there clinical studies for screening/preventive studies that I can take part in? Since my family has a large amount of genealogical data and our mutation is relatively rare, would our case be of any particular use or interest to researchers?
  • Are there any local support groups for BRCA+ women? Is there psychological counselling available for me if I felt I needed it?

What are the chances that there will even be enough time to answer all these questions? I am trying not to put too much expectations on the counsellor but, I admit, I fear that she will give me vague textbook answers to everything. Anyways, I’ll keep hoping that she a bit of a geek like me and will be excited to see a client so involved in the process.

So this is my initial list. Anyone else have ideas to add?

Advertisements


2 Responses to “Preparing for the Appointment”

  1. 1 Janine

    I’ve had several questions pop up after my genetic counselor appointment and keep in touch with my gc through email. Make sure yours gives you a way to contact her in the future either by phone or email. Also, good idea to discuss your family history with your regular physician for a second opinion on what medical testing should be performed. My gc did not recommend a colonoscopy for me because I didn’t fall into the practiced guidelines for early testing but my doctor thought too much was going on with the history and ended up saving my butt.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s


%d bloggers like this: