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Kaitlin Pielage's avatar

Yes to all the above. I am proud to be a member of a Cancer Prevention team to help our patients navigate these screenings and education. Thank you for shedding light on this!! Appreciate what you do, Dr. Flora!

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Ellen Kornmehl MD's avatar

Great discussion...especially where you bring attention to the murky area of who should be stepping forward to manage this risk and/or initiate referral

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Juliet Robertson's avatar

As a patient I find this a delicate area of consideration. 15yrs ago I had genetic testing for Huntington's Disease which I never regretted. The genetic counselling beforehand was necessary because of the wider implications. For example, once you know what you have, you can never return to the place of not knowing. Some people may find it preferable not to know.

Next, what are you going to do with the information, not just in terms of a medical plan but in terms of the implications for families, relationships and if you are young enough to have a child?

My 2 sisters and I decided we all needed to do it but this was after several months of discussions. I was always keen, one sister was undecided and in the beginning my other sister didn't want to know. Once you know, the decision about whom this is shared with matters too. My son still occasionally asks about his chances. Fortunately I can be emphatic and say "no" as I don't have the HD gene.

Finally thankfully we approached our financial advisor. We were advised to get our critical illness and other insurances we may need in place prior to being tested. Whilst HD isn't cancer screening, it's worth remembering these social implications of testing.

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Daniel Flora, MD, PharmD's avatar

Thank you for sharing. I agree. It’s not just a medical decision, it’s emotional, relational, even financial. I really appreciate you bringing up the insurance angle too — that often gets missed.

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Laura T RN BSN's avatar

Thank you! You really are so amazing!!!

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