Despite 26 years as a genetic counselor, people are often a mystery to me. Here I present a vignette that explores my inner thoughts and insecurities that can arise during a counseling session. It is drawn from no one specific patient. It may not be real but it is true.
***
“Have your doctors told you much about what I do or why genetic testing may be helpful?”
Playing her emotions close to the vest, eyes unreadable, a near-smile frozen on the face. She looks like she is posing for a photo she doesn’t really want to be in. Mastectomy, lots of chemotherapy; this isn’t going to be a walk in the park. She’s got to be feeling something.
***
What does she do for a living? Corporate VP with an international finance company. I wouldn’t understand her job even if she explained it to me. Every week she probably makes multi-million dollar decisions without so much as a second thought. But cancer is one situation you can’t control with a spreadsheet. Is it too early to reach into my bag of counseling tricks? Emotions are a tight rope. Wrong step at the wrong time, and the session goes into free-fall, with no safety net below. Maybe she thinks this is a waste of her time and just wants to get her blood drawn and get on with it already. Or maybe all those specialists scared the bejeezuz out of her, with their slick clinical lingo and impressive statistics. I sound just like them with my talk of oophorectomy and cancer risks. Who can grasp the real meaning of a lifetime risk anyway? Maybe I need to switch gears.
“You’ve met with lots of specialists this week. I bet you’ve heard more information than you bargained for.”
Well, she stopped taking notes. Maybe I can work her family into that opening.
“Have you shared any of this information with your daughters?”
A solitary tear, held in place by sheer will. Okay, now where do I go with this?
Short pause, then she replies “Tell me again the chance of this cancer coming back.”
She stopped that tear dead in its duct. She’s more comfortable when I play Medical Expert. Not quite ready to let the emotions spill over the dam, but it’s a start. I can play along with being The Great Authority for a while. She could be sizing me up to see if I am smart enough to earn her confidence and respect; nothing wrong with that.
***
“You know, you’re going to live, and probably for a long time. It will be rough going for a while, but you will come out the other side. You have good doctors and a great family. And I am guessing that you are tougher than your cancer.”
A hint of a smile, then a long pause. She’s struggling with this, not quite sure what to make of it. I hope I didn’t blow it.
“Will my insurance company cover the test? I forgot to call and check.”
That fell flat. I may as well just go along with answering her questions. Maybe it allows her some sense of control.
***
60 minutes, session over, and I am still unable to figure her out or if I did much good for her. She pauses at the door, and half turns to face me, tears starting to undo the make-up.
“Thank you,” she says quietly, ”You were very kind.”
Then she is gone.
The DNA Exchange 
Robert,
A very thoughtful post. As someone who has both worked as a nurse in genetics for 25 + years, and now as someone diagnosed with breast cancer in March of this year, I can tell you that this is a realistic scenario. Someone very important to me, diagnosed and gave me the bad news about my own breast cancer,which was a sad day for both of us. I was shocked but very stoic when I received the initial news. Numb, initially, and I did not cry.. just dressed quietly and left the women’s imaging center at the hospital. I drove home, calling my immediate family with the news, and managing to choke out the words. After that first day, it started feeling a bit like I was on a runaway train… moving so quickly from abnormal mammogram, to needle biopsy the next day, to getting results that the bx was positive for cancer, to attending appts with both the general surgeon and then plastic surgeons, & subsequently realizing I was facing double mastectomies to give me the best chance of survival long term —subsequently having to talk about the “options” for reconstruction (wow, getting future implants, and tatooing back on my areolas were never part of my thought process or vocabulary before and a bit tough to wrap my emotions or mind around…) , then walking into the oncologist’s office for the first time (scary just going in the door—realizing I was now one of “them”… the other folks in the waiting room), scheduling the surgery, and arranging for additional family to come and help me post op, dealing with the shock/horror of the diagnosis in the reactions of my family and friends, arranging for help for after surgery and for things that would help me be more comfortable during recovery, going to the lawyer’s office to update my will and make sure my Advance Directives were in place, then discussing the pros and cons of doing BRCA 1/ 2 testing with my family, since I am pre menopausal, mom died of breast ca and she was adopted so no avail fam hx, then doing surgery (and dealing with the initial post op pain), then that initial horrifying look in the mirror when the bandages came out, struggling with those even more horrible “drains”, which were painful, messy, and frankly, just GROSS—then developing serious complications, which included 3 more surgeries in the next 2 months, because the initial incisions did not heal and a MRSA like infection ensued+ more complications, which required a needle aspiration in my chest to remove fluid + complications from the antibiotics themselves, which required stoool analysis then more treatments for testing positive for C.Diff, the development of a “seroma” (fluid filled cyst) under my arm, where the lymph nodes were removed, which decided to rupture itself at odd times, soaking my clothes or spraying fluid from my armpits (my 6 year old niece freaked out, saying my “armpits exploded” the day it first happened) then finally…… when healing comes at last, facing going to have saline injected into the expanders every few weeks, until the skin is stretched enough to finally have the reconstruction done—a process a bit like inflating one’s tires each week… and literally making a woman go from being flat then through every stage of pseudo”breast” growth in a process of months–akin to a rerun of adolescence, then finally, I will have the reconstruction.
I am luckier than most, b/c I will not need chemo or lose my hair, but instead, perhaps a long term chemopreventative, which then has its own side effects and risk of other cancers, such as uterine, which requires heightened surveillance….
In summary…. after experiences like this, even with the best of care, is it any wonder a patient comes to a genetic counseling session, before, during or after this process, and is unspeakably numb, and perhaps not emotionally expressive, or is it simply emotionally wrung out (?) but yes, trying to keep some semblance of control within this emotional landslide ?
Just my two cents….ok, maybe a dollar’s worth !
Wow. Your experience has provided me with wonderful insight into what goes on inside of patients’ minds. I got more than my dollar’s worth out of your comments. Thank you. Stay the course on Recovery Road.
Bob,
I certainly recognize this type of patient, and have struggled with the feeling that I haven’t done my job correctly. Some of my thoughts and questions:
1) Do I pursue this patient, re-contacting them, to say I wasn’t sure after our session, whether I truly had been helpful, perhaps you’ve had time to reflect since our session?
2) Do I contact her much later (6 months?) to find out if my information has had any impact on her understanding of her condition or if it has faded from her memory?
3) Do we need to come up with another way for patients to share what they are feeling (I’m thinking of those fridge magnets that say “today I’m feeling” and have pictures of 20 different cartoon faces.) Between wearing masks to prevent the spread of the flu and using botox to freeze muscles, it’s getting harder to read facial cues of emotions!
However, the patients I struggle with even more are the ones with a chronic genetic illness who do not return for care. Is it how they cope, with denial and distancing, and how far does my responsibility go to try to reel them back into care? Perhaps a topic for another posting.
Julie
Julie and Rob,
I was that patient. In a prenatal setting, when my daughter was diagnosed at 20 weeks with a congenital heart defect. It is everything we learn it is — devastating, numbing, life-altering. I coped differently from my husband (how cliche!). Part of me wanted to absolutely fall apart, but another part of me wouldn’t let that happen. I sought knowledge and meaning, asked questions that were impossible to answer, was scared to death and mad as hell. I received tremendous support from friends, many of whom are genetic counselors, but couldn’t figure out how to let down my guard and lean on them. I wanted information from my (and, later, my daughter’s) health care providers, but didn’t want to burden them with all that might come spilling out if I started to articulate the fear, anger, sadness. Patience, time and information were what I wanted from my health care providers. Genetic counselors are good at that. To answer your questions, Julie, I chose to keep my emotions in check when meeting with providers because I didn’t want anything to distract from the information I sought. It was okay for me to look elsewhere for emotional resolution. A call later on about what I retained would have been nice, though not necessary. A call asking how I was would probably have yielded my standard line “she was fine after 4 days…the rest of us are still recovering.”
Rob, I’d like to approach a couple of the GCs who went through the ordeal with me (in the roles of friend and GC provider) and create a post between the three of us about what it looked like from each angle. Do you consider this to be an appropriate place to share that?
Cheryl
Cheryl-
Thanks for sharing your story here. I think your idea to put together a collaborative piece with others involved in your experience is a really, really great idea. And I do think this is an appropriate place to share. If you want, email me at alliejanson[at]gmail.com and I will send you some basic information about putting together a guest post. Not to speak for Bob– but I will anyway!– I am sure he’d be happy to assist in the editing process along the way.
Thanks again Cheryl.
Robert,
I want to thank you for this post. I am currently applying to GC Masters programs for fall 2010 and I found this post to be very inspiring. It is so interesting to glimpse inside the mind of a counselor during a session. I have read accounts written by patients about their experiences with genetic counselors, and genetic mutations, but I have not come across many accounts written from the other side. While I spend time thinking about why I want to pursue this career, I occasionally find myself second guessing my choice due to my own insecurities and fears that I will not always know the right answers during a counseling session. Seeing how after 26 years, you still find yourself confused and insecure at times is comforting and I find myself referring back to this post when my doubts flare up.
Thanks again to you and to all the writers, I really enjoy reading your blog!
Emily
Thanks for the post and the comments. I agree it helps to have the perspectives of GC’s that have been patients themselves. It is comforting to know with your experience that you still have these experiences and using the tools in the box sometimes leaves the experience feeling a bit unfinished so to speak, or that is how i feel sometimes. Anyway, thank you.