Great posts Joe! Thanks so much for sharing.

And as I suggested here:
http://www.owningpink.com/blogs/owning-pink/the-doctor-patient-relations...

I'm all for participatory medicine. It's the only way to go...

Thanks for rallying for the cause!
Warm hugs
Lissa

So glad to have another doc/difficult patient on board. WOOT!

As a 33 year old Breast Cancer Survivor who has decided NOT to take Tamoxifen, doing everything as naturally as possible- I just want to say THANK YOU for posting something like this! It's really hard to be your own advocate sometimes! Someone once said that doctors are trained and paid to treat- not trained and paid for prevention! How sad. It can be so confusing in Cancer-Land... people profit off it so much that you never know what the truth really is! If it's not about the standard of care, they don't want to hear it. I wish all my doctors were like Girlfriend MD! xo <3

I've had breast cancer and I'm a physical therapist. One of the good things about being a PT is that it's impossible for patients to progress with rehab unless they OWN their plan of care. So, whether I like it or not -- but I do like it -- I must provide all the info someone needs for informed consent, or I may as well pack up and go home.

It stinks that doctors end up having ten minutes to spend with patients, especially those who are dealing with some new and life-threatening diagnosis. You cannot possibly provide an opportunity for a patient to make informed consent about big decisions -- for cancer treatment, for example -- in ten minutes. I won't even get into what my experience as a cancer patient was like. Suffice it to say that it's what caused me to start a blog and try to educate others about what informed consent really means, among other things.

Bravo to you for making the time to help patients deal with the important stuff adequately and effectively. Informed patients improve our treatment outcomes as clinicians. Informed patients who are respected by their doctors send them other patients who are more likely to be compliant and eager to get better. I wish all doctors felt the same way you do.

What an awesome post. I hope a lot of doctors see it. I was lucky enough to have four wonderful doctors treat me as a partner as they guided me through breast cancer treatment. I did have an initial oncology consult who seemed to forget there was a person attached to the breast. I voted with my feet pretty quickly on that one. The good thing about that consultation was it made me appreciate my other doctors that much more. Here's to my wonderful docs--and to you!!!

Thank you!

My daughter spent her 1st 7 months in horrible pain because she couldn't have a bowel movement. She would scream in pain until she passed out from exhaustion. Her doctor said it was colic or constipation. Give her more enemas/suppositories is what I was told. Multiple times a week I took her, screaming in pain, to his office and told him there was something wrong, it's not colic--and very often I was armed with printed pages of information I found on the internet. I'm VERY SURE he hated me by month 7.
Basically, to SHUT ME UP, he sent her for tests at a specialist. She was diagnosed with Hirschsprungs Disease- one week later, she was in surgery having 10 inches of her colon removed and her rectum completely reconstructed. Untreated HD can result in death.
Was I embarrassed to question his expertise? Sometimes, yes. Did I come to hate walking in the door and the looks I got from his staff? yes. Am I glad that I was a little pushy and now my daughter is healthy and not in excruciating pain anymore? ABSOLUTELY! She couldn't speak for herself- so as her mother, that's my job.
I will never be afraid to question my doctor again. In every other circumstance, I respect my doctor's knowledge, but he is only human.

I'm a writer/researcher for a living, so good thing I read Dr. Susan Love's Breast Book after my January 2011 diagnosis of DCIS (ductal carcinoma in situ). Upon a mastectomy in March, the diagnosis became DCIS with invasive DC. My oncologist was going to send me off to chemo, with nary a chance for me to question her about her stat that I had a 44% chance of recurrence. (It was a TERRIBLE appointment. She never even asked if I had questions. I had to chase her down the hall once I realized the appointment was actually over.)

I remembered reading about a genotyping assay for my precise cancer profile in Dr. Love's book. I demanded (to the nurse coordinator) that the test be run. It was paid for by my insurance company. My Oncotype DX recurrence score was a measly 4 (very, very good); a top doc in St. Louis agreed that there was absolutely no point to chemo.

Needless to say, I have a new oncologist. And an unshakable awareness that I simply HAVE to be my own researcher/advocate. You are leaving too much to chance otherwise. In point of fact, I have always shopped around for doctors. I pose questions (such as "I prefer always to try lifestyle modifications before medication...how does that jibe with your philosophy?") and then move on to another doctor based on the response.

Thanks for letting me get this off my Uniboober chest!

Lissa,

Thank you for this post (and other on New Medicine). I've been dealing with a chronic condition for 30 years and know more about it than any of my primary care docs have known, which is particularly important when your insurance drags its feet in approving visits with a specialist. It has taught me to be pro-active and speak up with all my medical issues. I recently developed psoriatic arthritis and the podiatrist I saw a year ago said that the first course of treatment for someone as young as I was to surgically fuse all the joints in my toes so the arthritis would have nothing to attack.

Seriously? Before trying anything else, you want to cut every toe open and fuse my joints? He didn't even want to talk about any other options and he didn't appreciate my input at all. Needless to say, I don't see him any longer.

Keep on banging that drum, sister. We've been trained to give away our power to the people in the white lab coats, so some folks need that sense of permission to speak on their own behalf.

I've been dealing with breast cancer for quite some time. The longer I go, the less patient I become with doctors who don't want to allow me to talk, or who fob off my questions. Last time that happened, it was with a radiation oncologist, who was proposing a treatment that posed some risk to losing function of my arm. He said it like it was nothing. Nothing! Now between you and I, I quite like having the use of both arms, even if limited capacity, but I was very quick to let this doctor know that this risk was something that I needed to really consider as well as the timing of such treatment. After I interrupted his monologue, and he got the fact that I might know what I'm talking about when it comes to my own body AND treatment, he then started talking to me like I was a human being, and in fact we had quite a good conversation in the end. The point of all this is, that I demand to be treated like a human being, not a symptom. not a disease, not a case file, a human being. I accept nothing less in my medical care now.

I think it's vital to be an educated patient. I used to live in Britain where, despite there being a National Health Service, if you didn't know something about what condition you might be carrying, it was likely that you'd be fobbed off with "Oh, it's nothing to worry about", or "Just take this and you'll be fine". Indeed, I was fobbed off for years with a skin condition that's only being treated now that I've emigrated to another country. Worse still, my late Uncle was diagnosed with a cancer and placed all his faith in the doctors who were treating him between their extended holidays. The lack of continuity and conflicting information left him a totally disenfranchised from the possibility of recovering. The lesson is always question what you're being told - even for the sake of confirmation - and make them do their jobs.

Oh, heck, yes. I am Eloise. I am exactly like that, especially when it comes to invasive procedures and prescriptions. I read and re-read. I study every bit and part of my results and medical records and, sometimes, I question my doctor. I find that at times it bugs them that I go for second opinions. I just don’t care. It’s my body. Period. Tough it. You don’t own me and you don’t have a right to tell me what to do. I choose here. I’m the one who has to live with the symptoms. I am tired of feeling obligated to or beneath my doctors. I put my trust in them when my they can express trust in me. I am all for what you’re doing Lissa. I have placed everything of myself in the hands of another person for years. That’s not happening anymore.