Do Patient Empowerment & Squeamishness Mix?

This post originally ran a year ago. I dusted it off because I was looking up medical terms online last night and encountered some photos that brought the old squeamishness back. -Jackie

 Patient empowerment is all the rage lately. While I distrust the way the “e” word sometimes verges on ideology, I’m all for learning what’s happening when we get that front row seat to medicine thanks to cancer or another big diagnosis.

But how best to learn if you tend to be medically squeamish? My previous patient experience was limited to an annual visit, with a handful of garden-variety illnesses and the inevitable screening tests required once you hit your 40s and 50s. I’ve never had a problem with those tests, or with needles, but once I learned my breasts were going to be the focus of a cancer adventure I felt a bit queasy.

The thing is, I can’t even stand nipple rings. Back when my husband Bruce and I used to take his Harley to the big bike rally in Sturgis, S.D., I averted my eyes a lot. I found myself doing the same thing now as I loaded up on breast cancer books. How do those DCIS cells act? Sure. An illustration of a nipple floating off into space during a mastectomy? Not so much.

I wanted to know what to expect without getting too much detail, if that makes any sense. So while I learned enough to know I wanted implants instead of tissue replacement surgery for reconstruction, I didn’t read about surgery details, and I couldn’t look at before and after reconstruction photos available online.

I had gone through the mastectomy and first-stage reconstruction before I became curious about things like how my surgeon was able to balance tissue removal and skin preservation during the mastectomy, or how my plastic surgeon was able to recreate a nipple.

Believe it or not, I actually watched him do it, since it only required local anesthetic. If you had asked me five years ago if I wanted to watch myself getting a nipple built, I probably would have yakked on your shoes. But this was my fifth surgery in nine months, so I had gotten used to it. And I’m really glad I watched because it was fascinating.

But that’s me, and it happened over time. You may want every last detail, or you may prefer letting the experience wash over you. And there’s nothing wrong with that. I would recommend learning enough to be able to make an informed treatment choice, and giving yourself enough time to make that choice.  Whether you ever learn what they do with those scalpels or watch them do it is totally up to you.

For the record, nipple rings still gross me out.

The Kindness of Strangers

“No act of kindness, however small, is ever wasted.” -Aesop

I see my oncologist for my twice-yearly checkup tomorrow, and while my visits have been blissfully mundane over the last three years, this time I actually have a list of questions and a couple of concerns over the lab results from my latest physical. It’s probably nothing, but once you’ve had cancer you can’t help but wonder which “nothing” is actually the edge of trouble’s long shadow. My family doctor sees no cause for alarm, although she promised to keep an eye on things and outlined a course of action that sounds reasonable. I agree, but told her I’m also going to share my lab work with and relay our plan to my oncologist.

I serve on the citizens’ advisory committee of our community cancer clinical trials program, and I’ve come to know its program director, an oncology nurse. We were e-mailing each other today about an event we’re having next month, and she wished me well on my appointment. When I shared my fears with her, she told me they’re normal for anyone who’s been through cancer. She said telling my oncologist is a good move. Then she told me to enjoy my upcoming vacation in Napa, get some sun on my face and relax with a nice glass of wine because I deserve it.

Her e-mail made me flash back to the first e-mail I ever got from her. I was fresh from a horrible consult with an oncologist who recommended a mastectomy after 10 minutes with me. Oh, and I should really consider an MRI, in case I needed a bilateral. Needless to say, I was freaked out.

I was so high on the freak-o-meter that a friend of mine asked Mary Beth, the program director, to get in touch with me. He had kept recommending the oncologist who is now my doctor, and I kept saying no until this awful consult. My oncologist is a principal investigator with the program Mary Beth heads up and she knows him well. She e-mailed me to let me know my soon-to-be oncologist was both smart and nice. She also told me that having cancer in both breasts is extremely rare. This wonderful woman talked me down, and she didn’t even know me. Her kindness radiated through that e-mail.

Mary Beth wasn’t my only encounter with kindness–far from it. I’ve talked before about the kind woman who rescued me in the waiting room the day I had my first-ever surgery. There was the young woman with the insurance company who helped me sort through a billing issue, then paused and said, “How are you?” like she really meant it, and shared her own family history. There was my beyond-awesome surgeon’s equally beyond-awesome receptionist. My journey had many such moments of kindness and I’m sure yours did too.

Today, I see this kindness in social media as well. I see it in the #bcsm tweetchat and the women who worry about each other if they’re offline for too long. It’s nice to know that kindness is alive and well. I believe it’s true that no act of kindness is ever wasted. And you never know how long your kind gesture will stay with someone. It might be for far longer than you think.

Do Patient Empowerment & Squeamishness Mix?

Patient empowerment is all the rage lately. While I distrust the way the “e” word sometimes verges on ideology, I’m all for learning what’s happening when we get that front row seat to medicine thanks to cancer or another big diagnosis.

But how best to learn if you tend to be medically squeamish? My previous patient experience was limited to an annual visit, with a handful of garden-variety illnesses and the inevitable screening tests required once you hit your 40s and 50s. I’ve never had a problem with those tests, or with needles, but once I learned my breasts were going to be the focus of a cancer adventure I felt a bit queasy.

The thing is, I can’t even stand nipple rings. Back when my husband Bruce and I used to take his Harley to the big bike rally in Sturgis, S.D., I averted my eyes a lot. I found myself doing the same thing now as I loaded up on breast cancer books. How do those DCIS cells act? Sure. An illustration of a nipple floating off into space during a mastectomy? Not so much.

I wanted to know what to expect without getting too much detail, if that makes any sense. So while I learned enough to know I wanted implants instead of tissue replacement surgery for reconstruction, I didn’t read about surgery details, and I couldn’t look at before and after reconstruction photos available online.

I had gone through the mastectomy and first-stage reconstruction before I became curious about things like how my surgeon was able to balance tissue removal and skin preservation during the mastectomy, or how my plastic surgeon was able to recreate a nipple.

Believe it or not, I actually watched him do it, since it only required local anesthetic. If you had asked me five years ago if I wanted to watch myself getting a nipple built, I probably would have yakked on your shoes. But this was my fifth surgery in nine months, so I had gotten used to it. And I’m really glad I watched because it was fascinating.

But that’s me, and it happened over time. You may want every last detail, or you may prefer letting the experience wash over you. And there’s nothing wrong with that. I would recommend learning enough to be able to make an informed treatment choice, and giving yourself enough time to make that choice.  Whether you ever learn what they do with those scalpels or watch them do it is totally up to you.

For the record, nipple rings still gross me out.

Yes, Virginia, You Need A 2nd Opinion

(This is a “dispatch from the past” that originally ran last year. -Jackie Fox) When you’re diagnosed with cancer, certain things have become accepted practice. One is that you take someone to appointments with you because you’ll be too jacked up to process what the doctor says. Another is that you get a second opinion.

While I can vouch for both, I want to focus on the second opinion. I won’t go into all the reasons why it’s a good idea; you can find those through any number of resources. I want to explain why it made sense for me.

I assumed I’d get a second opinion when it was time to talk to an oncologist about treatment. But once I did, getting a second opinion felt urgent, because I didn’t like the recommendation or the way it was delivered.

I should back up the truck and explain that I was diagnosed with ductal carcinoma in situ, a very early stage cancer that is not invasive, although it can become invasive if not treated. It’s often successfully treated with a combination of breast-conserving surgery and radiation. I assumed I would be on this path until two surgeries didn’t get the desired results. Oncologist No. 1, after taking a family history, said, “I know you don’t want to hear this but I think you need a mastectomy.” I’ll spare you the details but the conversation went downhill from there. I felt like I had been sucker-punched.

On to the second opinion, who became my oncologist. The difference was night and day. The first doctor spent 20 minutes and was direct to the point of being blunt. The second one spent an hour and 20 minutes and said I had options, which was exactly what I needed to hear. He ended up making the same recommendation as the first doctor, but told me he would support me if I opted for radiation and surveillance. I chose the mastectomy and have no regrets.

An important thing to remember about second opinions is that even though their recommendations may be the same, you may find one doctor’s style suits you much better than another’s. You will spend a lot of time with him or her and you need to be comfortable. So get that second opinion and don’t worry about hurting anyone’s feelings. It’s your body, your life, and your choice.

Modesty and Breast Cancer

Once you get past the shock of learning you have breast cancer, the realization that quite a few people will be viewing a rather personal part of your anatomy begins to sink in. This is not welcome news for those of us who tend to be physically modest, that is, most of us.

Pelvic exams  are still No. 1 on my list of Least Dignified Procedures, but I’m lucky there because I’ve seen my doctor for something like 17 or 18 years. I’ve reached the point where I can chat with him and his nurse about Husker football while his hand is, shall we say, occupied.

Whenever I’m in that goofy robe (or the paper “lobster bib” my general surgeon favors) I tell myself it’s just another day at the office for them. Meaning I’m not showing them anything they haven’t seen before, so I’ll pretend I’m as relaxed as they are. That usually helps.

I also lean on humor when I’m stressed, and I often remember the beyond-brilliant Richard Pryor’s riff on physical modesty. He talked about the indignity of handing over a urine sample and how if any of us civilians were collecting it we’d enter in hazmat suits like we were defusing a bomb. He compared that to health workers zooming in and saying “Is this your p*ss? Thank you!” and snatching it like a cup of coffee.

I’ve gotten used to the general indignities of medical procedures, including mammograms, as I’ve gotten older. The facility where I get mine only uses female technicians, and I think that helps. If your facility doesn’t, you are certainly within your rights to ask for one.

But in spite of all this, whipping the girls out for inspection at least once and sometimes twice a week while I was treated for breast cancer definitely took some getting used to. And my comfort window, if you can call it that, was initially pretty narrow.

I had gotten used to having my left (bad) breast inspected. But after our second attempt at breast-conserving surgery, my surgeon looked at the right one. He had never done this before and I was startled enough to ask him why. He replied for symmetry, which made total sense but I was momentarily ready to leap off the examining table. I eventually did get used to it, but there were times I really wished something was wrong with my arm or leg.

I guess my point with all this is that if you’re modest, know you’re not alone and that you can get through it. I like to tell my family doctor that no one ever died of embarrassment, but that’s not strictly true. If you’re too shy to get a screening exam that could save your life, it’s entirely possible.

Take a friend with you. Tell yourself it will be over soon, and remind yourself that medical professionals are here to help you, not shame you. In my experience, shame is self-inflicted and like fear and doubt, we’re our own worst enemies. Don’t give in. Do whatever it takes to get through that screening, but don’t avoid it. You just might save your life.

I’m A Patient, Not A Consumer

Note: I wrote this guest post for KevinMD.com and it generated a fair number of comments.

I’ve been hearing and reading a lot lately about how the doctor-patient relationship is under siege. There are many reasons for this, ranging from care decisions increasingly being made by insurers to the shortage of primary care physicians, to patient empowerment.  I didn’t quite understand how patient empowerment could be a threat, until I started thinking about the recent perceptual shift from patients to health-care consumers.

I agree with the consumer definition, but only up to a point. I live in a large enough population center that I can shop around until I find a doctor I like. But for me, that’s where the consumer metaphor ends. We may consume health care services, but it’s nothing like purchasing a car or a sofa.

Yet people increasingly seem to think it is. They think doctors should be the equivalent of a 24-hour shopping website, at our beck and call whenever the mood strikes because as we all know, instant gratification takes too long. They should be available by e-mail and Facebook and texting and if they are not, they are not providing good customer service, as one blog commenter recently said.

Well, I’m sorry but that point of view is what my dad would call “horse manure.” I had four remarkable doctors—my family doctor, general surgeon, oncologist and plastic surgeon—guide me through five surgeries for early stage breast cancer. Not once did I feel like I was receiving poor “customer service” because I couldn’t reach them by e-mail.

Now, I do agree that we shouldn’t be so blinded by the white coats that we don’t ask questions when we don’t understand a medical term, or when we want to know why a doctor recommends a certain course of action. (And if a doctor sees your questions as an insult, then yes, you should make like a consumer and take your business somewhere else. The good ones welcome your questions and respect your concerns.)  But being assertive is an order of magnitude removed from demanding a drug or treatment because we read something on the internet, or thinking it’s okay to take a phone call in the middle of a consultation. The very clear message is that we don’t value their time or considerable skills.

Speaking of skills, I’d really like to know where you get off treating someone who spends at least 11 years in training as the hired help. This arrogant viewpoint can only erode trust, the linchpin of the doctor-patient relationship. My family doctor told me that the word “doctor “comes from the Greek for “teacher,” and that teaching is a large part of what they do. I can vouch for that, as he was my breast cancer sherpa. I never could have gotten through this experience without him. Because I trusted him, I trusted the specialists he referred me to. And because I trusted them, I trusted their surgical and staff teams. See how that works?  I’m happy to report that my trust was well-placed.

I’m also happy to consider myself their patient. Maybe the word “patient” has become equated with “subservient” in some circles, but I’m not buying it. I see no power struggles here. To me, being a patient means I’m in the care of people who have committed themselves to healing and helping others. What could possibly be wrong with that? Nothing, unless I see my almighty consumer self as the center of the universe, and doctors as just another set of sales clerks.

So please, unless you see me at the mall shopping for shoes, don’t call me a consumer.

Grand Rounds Vol. 6 No. 46: The Power of Listening

I once worked with a psychiatrist who called listening the most underrated skill, and his words are truer now than ever. Listening is hard work; too often, we just wait for our turn to talk. And that’s if we’re being polite. We don’t talk to each other; we talk at each other or sometimes over each other in the loudest voice possible.

This trend is both sad and wrong, but there is hope, as evidenced by the thoughtful posts I received on all facets of communication. In the wonderful post The Hidden Pearls of Medicine: Stories From Our Patients, Medical Resident recalls a first patient encounter. MR calls hearing patient stories a privilege and “has been left with a sense of wonder” after these encounters. On behalf of patients everywhere, thank you.

Fads in communication come and go, and Will Meek, a psychologist in Vancouver, wrote about discredited psychological treatments (Neuro-linguistic Programming, anyone?) He also offers sound advice about finding treatment that stands the test of time.

Dr. Rob at Musings of A Distractible Mind wrote the insightful Letter to Patients With Chronic Disease. It became a bit of a Rorschach test, prompting wildly varying interpretations of what he said. And How To Cope With Pain, a psychiatrist who both treats and endures chronic pain, offered How to Connect With Your Doc.

Erin is a pre-med student who has cerebral palsy. Like other chronic illnesses, it comes with assumptions and stereotypes, which she dismantles in “Cerebral Palsy: What It Isn’t.” I predict that her experience will make her a compassionate doctor.

Speaking of compassion, one of the toughest parts of being a doctor must be sharing bad news. Anne Marie, a family doctor and clinical lecturer at Cardiff University in Wales, shows us how medical students learn this difficult art in Teaching Communication Skills. Bongi, a general surgeon in South Africa who blogs at Other Things Amanzi, shares a real-life story in Salt Water Wells Up. And Marie, who blogs at Nourish Ourselves, describes being on the receiving end of such news in Breaking News, Breaking Faith.

But not all communication is sad. Dr. Michael Kirsch at MDWhistleblower decodes The VIP Patient: Doctor, What If I Were Your Mom? His fill in the blank examples are priceless. Sharp Incisions, the blog and nom de plume of a medical student, shows how a stethoscope can become a successful if unconventional communication tool. And Elizabeth, a medical resident in Texas who blogs at OB Cookie, explains how her conversational and party Spanish didn’t quite cut it in the gynecology arena. In addition to being very funny, I love how her affection for her patients shines through.

Like it or not, technology is affecting the way we communicate. Jill of All Trades, MD has a funny but pointed take on cell phones in Mission Impossible. (You’ll want your sound turned up to get the full effect.)

Some people even question whether computers and robotics will make doctors obsolete. Dr. Eric Van De Graaff, a cardiologist who blogs at Alegent Health, refutes this theory quite well in The Art of Medicine and Whether Computers Can Replace Doctors at KevinMD.com.

And the Happy Hospitalist’s Patient Initiated Rapid Response Teams has a bit of a Brave New World feel, as it takes patient empowerment to its not-so-logical conclusion (and it involves cell phones!  I’m sensing a theme here.)

The notion of patient empowerment is affecting not just communication, but compliance, Julie Rosen explains in The Balance of Power Between Patient and Doctor. (Read it in conjuction with Medical Resident’s Hidden Pearls.)

Empowerment was not in the medical research vernacular in 1951, when Henrietta Lacks died of metastatic cervical cancer. In Henrietta’s Cells Speak, Dr. Elaine Schattner recounts how Ms. Lacks’ poor, uneducated family had no idea her cancer cells were bought, sold and used at research institutions worldwide.

It’s not always about doctors and patients. Nurses are an important part of the equation, and Jacqueline, who blogs at Laika’s MedLibLog, offers 10 Random Tips for Nurses. 

Communicating is connecting, and I want to close with what I consider the ultimate example of human connection, Flowers for the Lovely Wounded at the Examining Room of Dr. Charles. In the tradition of William Carlos Williams, Dr. Charles is both doctor and poet. (Check out his poetry contest.) I wonder if that’s what made him so good at hearing what his patient didn’t say. Dr. Charles, I know she remembered those flowers and your kindness until the day she died.

Next week’s Grand Rounds will be hosted by Dr. Ed Pullen at DrPullen.com. His theme is In the Office, which can be wherever you give or receive medical care.

Thanks so much to all who submitted. This was truly an honor. Now if you’ll excuse me, I have to go get my “I Hosted Grand Rounds” badge.