What questions should I ask a Genetic Counselor?

My experience was that I really didn't need to worry about what to ask the counselor. She asked ME a LOT of questions and had me complete a very detailed questionaire/family tree. I don't remember them asking anything like ductal/lobular. Just which relatives had what kinds of cancers (prostate, etc.) & at what ages. Also about other things like thyroid disease. Also questions on nationalities/ethnicities. Not just female relatives-male also. Your Dad's side of the family too.

She reviewed it with me and asked a bunch more questions. She then shared exactly which genetic syndromes she thought were a possibility I/my family might have and what specifically she was going to test me for.

After the testing (negative) she also talked about future things. My Dad does NOT want to be tested, despite both his mom & sister having colon cancer. She suggested if we could talk him into it, polyps from his next colonoscopy could be sent to her for processing after pathology

The one question I would ask is, "How do I make sure I am up-to-date with new developments in genetics that might be relevant to me?"

If you see a genetics counselor now and nothing is identified, that doesn't mean you are in the free and clear and have no familial risk, it just means that you don't have one of the genetic abnormalities that is NOW known to increase risk. "Now" is the key word there. There's a lot left to learn about the human genome, and discoveries are happening all the time. It's very possible that someone with a strong family history of cancer has an abnormality that's been passed down in the family, but science has not yet identified that particular abnormality as something that should be checked for. That person would have negative testing now, but it wouldn't mean negative as "definitely nothing heritable going on here," it only would mean they don't have one of the abnormalities that can be checked for.

Positives are a lot more straightforward, negatives leave you wondering maybe it won't be negative in 2027 because we'll know more.

Edited to add: this isn't the one question I would ask - that was badly worded. It's just the one I wouldn't think of.

Me too. Over 7 years, I've had 3 rounds of testing, everything "negative" so far.

Outfield- my family members, even the one two years before me, didn't know their ER status or their type of cancer. I just found out UCSF has a genetic cancer component and am going to follow up with them. My daughters don't know about my gene because it's a 'variant of unknown significance' but I'm pretty sure it causes cancer of the head, neck, lungs, ovaries and breasts when mixed with smoking. My kids will be the first without a house full of smoke so here's hoping that gene doesn't turn on!

Let us know what you find out.

M