Genetic Counseling! Who knew there was such a thing? Not me, until a few weeks ago. My doctor at UCSF, Dr. Melisko, said it might be useful for future treatment decisions to see if I was positive for either of the currently-known breast cancer genes: BRCA 1 and BRCA 2.
So: I said: sure! I’ll do it.
Last week I dutifully went to the ‘genetic counseling’ appointment, just a routine thing for me. No pain, no possible horrible news, mostly just signing the papers and listening to what they had to say. The woman who was to do the appt had a grad student ‘shadowing’ her, so the grad student did my counseling. This is where the comedy begins.
said in hushed, soothing tones: Thank you so much for coming in today. We’re here to answer your questions and make sure you are making informed choices on this difficult topic.
my thoughts: (is she kidding? can I just sign the papers?)
what I said: ok.
after some legal stuff and basic info what the genes were, she got to the juicy stuff:
Have you considered how you might feel with the results if they’re positive? That might be difficult for you. (still in hushed careful tones)
My thoughts turned into immediate Tourettes style speech: Really? Are you kidding? I already HAVE the damn disease! Can we just sign the papers? I’m just doing this because my doctor recommended this for future treatment options. I’m really just here to sign the papers.
hushed grad student: Have you considered how you’ll feel if the results are negative? that is also a difficult thing for some to hear.
me again: see above. I already have this disease… can I just sign some papers and get across the street to the YUMMY thai iced tea at My Fathers Kitchen? please?
Then the mentor (with amused grin on her face the whole time, she’d clearly seen people like me in her office before) discussed Cowden syndrome with me, and asked if I would allow them to measure my head.
me: Sure! Then can I sign the papers? after measuring head:
me: So my head isn’t that big, right? yes, hats are often snug on my head… but I’m in the normal range, right?
mentor/chuckling/veteran woman: ummm, your head is pretty big!
and so it went. I was truly trying to be patient. The grad student only got a little flustered, but her mentor was laughing out loud. At the end I suggested (politely, really!) that she should try to read people better. I am already in stage 4 metastatic stages of this disease! Let’s all move on with our day! Can I sign the papers yet? She finally let me sign the papers.
I’ll have the results of the test in 2 weeks or so. But I’m not really that anxious!
Dear Julia, I live in Aptos, and have been a CSA member for many years, and… I was also diagnosed with stage IV metastatic breast cancer last year. I don’t want to post a long public comment, but I wanted to offer to have a conversation if you’re interested. I coordinate my care and treatment between Stanford and Santa Cruz. I don’t know anyone else, other than you, who is finding a way to combine the expertise of a big center with the convenience of an oncologist close to home. Although I know way too many women with breast cancer, I don’t have contact with too many stage 4-ers like us. Please feel free to contact me if you’d like to. take care, Bonnie
I also have a blog: http://www.bonniegintishealth.blogspot.com
I have always had a double reaction to the “hushed, soothing tones” used not only by professionals but also by just regular everyday people when they are talking to or about someone with cancer. I feel the need to almost laugh in their faces, and, on the other hand, to yell out “oh, you mean CANCER?” The truth: I usually do the latter!