I care for many patients diagnosed with breast cancer, and they’re often accompanied by family or friends. Some of my patients are so invested in their care that they bring me stacks of research studies about their treatment options, along with many questions. And some are more well-versed in their healthcare rights than I am. Maybe this describes you. Are you the kind of patient who doesn’t hesitate to raise your voice if something doesn’t seem quite right with your care or your medical records? Are you a person who doesn’t let anything go until it’s resolved? Then you may have been told at some point in your care that you’re a “difficult patient” — that you’re a challenge, that you bring too many issues and questions to the table, that your medical team has to brace themselves when you arrive for your visit.
If you’re a “difficult patient,” I’m grateful. You make me work harder to stay acutely aware of my patients’ situations and needs. You inspire me to do my job more effectively every day.
I’m sharing a speech I gave on this subject at a cancer survivors’ night last year. And if you consider yourself a “difficult patient,” share your story in the comments below!
SusanFB says:
Thank you for your article on “difficult patient.” I’m the “difficult daughter” of a 91 year old patient, who is otherwise in good health and independent. Unfortunately, Medicare doesn’t pay doctors to sit and discuss, and if I ask too many questions, it is obvious my mother’s doctor is getting restless to see the next scheduled patient. I applaud you for being supportive. One doesn’t feel comfortable “pushing” the person (doctor) who holds the health-strings of their care. What’s a body to do?
shelly56 says:
Until the medical community “lives” cancer themselves or can really relate, there is no such thing as a difficult patient. Knowledge is power for some, not for others. I brought every piece of literature relating to breast cancer along with several questions to each oncology visit. My oncologist tried her best to answer what she could, and if she didn’t know the answer she would tell me.
Jackies2007 says:
I’ve been a difficult patient all my life!
Was born premature at 4.4 lb. stayed in the ‘incubator’ for a couple of weeks (?) until an older lady advised my mother to bring me home and warm me with her own body temperature because ‘the hospital (setting) is not good for babies’
Had a life-long brain tumor that was not found until I was 30 and had severe headaches.(like the brain was going to split in halves) The first doctor i saw (in my native country) when I was 24 told me: “Then don’t jump!” after I described my symptoms happened frequently while playing basketball (had been on school teams all the way to college) Six years later, when the headaches were no longer bearable, I finally was given a CT scan followed by an mri to solve the mystery.
Those six months before the 4cm x 5cm x 6.5cm Central Neurocytocma was finally diagnosed) I had fired one family doctor (who told both my husband and me that he could refer me to a psychiatrist) and demanded the next doctor to give me referrals (after a library volunteer who’s a retired pathologist had told me that my ‘dizziness’ was a serious condition …)
That happened in 1990. Then I had breast cancer treatment in 2003 and the recurrence was not found (missed three years straight because they thought the new growth was ‘scar tissue’) until I brought it up to the original surgeon. Then I had to demand a BRCA test which later led to a prophylactic hysterectomy.
Just a month ago I figured out (along with a nurse practitioner of a branch clinic) that I was having appendicitis … (fortunately the spots on the liver were not breast cancer metastasis).
Anyway, patients have to be proactive and doctors need to recognize not all demanding patients are suffering from the Munchausen syndrome.
Portulaca says:
Yep, I’m one of those difficult patients too. I’m also a Counseling Psychologist with a PhD & knows about research, and considers myself to be a warm & fuzzy person. The medical field is still very traditional with limited time for their clientele. Started radiation treatment last week. Demanded I see doctor to ask more questions since I’m a breast cancer survivor of 15 years, and recently diagnosed with breast cancer in other breast. Needless to say, I have felt frustrated as their is a lot of research out there, BUT, limited resources. There needs to be a counselor in every cancer institute, radiation & chemotherapy facility so clients can meet with counselor after a session if requested. What usually happens is the the client, me shows up 15 minutes in advance for radiation treatment, gets vital signs taken, asks me how I’m going, get undressed, lay on table for treatment for 10-15 minutes, staff says thanks and see u tomorrow. Off I go, get dressed & go to my car. It all seems surreal. I’d like to propose that all oncology clinics offer counseling on the premises as insurance would cover this benefit. So, now I’m gonna market myself as an advocate for breast cancer survivors. That’s my mission in life!!
Thanks for allowing me to express my opinion!!
Sincerely,
Carol Cherich
Ladybird-dancer says:
OMG! This is brilliant! Would that there were more Drs like this in the world. I am in the UK and I have definitely been a classic “difficult patient” – so much so that at one point I actually apologised for being a pain in the arse – my consultant immediately replied “You’re not a pain in the arse.” Nice 🙂 Because I am a “difficult patient” because I just don’t really believe in orthodox methods for treating cancer – this is the 21st century…..there MUST be another way other than slash, burn and poison, I asked my consultant to explain a letter I received from the oncologist with his “Diagnosis” outlining why I needed Radiotherapy…………..we found that the oncologist was using the wrong data!!!!!!! He was using the intra- as opposed to the post- operative pathology report…….so he used the wrong data and as a result my consultant advised me that I did not need Rads at all. Can you imagine how many times this might happen??????????? Scary. Must get that book. Be “difficult” and be sure and ask questions and be logical and be intelligent and make them think and remember they are not always right and they can be just plain wrong! Best wishes to all of those out there dealing with this nasty illness.
wench911 says:
I am a very “difficult” Breast Cancer patient…I have always researched all my options and asked question to make sure I was getting the right treatment and the right surgery outcomes during reconstruction…I have been a BC “Survivor” since 2002…BLESS YOU, Brian Wojciechowski, M.D. for thanking us “stubborn and difficult” patients…You ROCK!!!
carmen126 says:
Hi, I’m a patient read a lot about cancer ( even though I am a lawyer ) ; although doctors sometimes chafe a bit with me I realize that they like this informed ; I also know that doctors realize when a patient asked for suspicion and when a patient asks them because you want to know more.
In my case both reading was a double-edged weapon , because I found that my average life is 5 years ; although I have 5 years and 6 months ; and I thought I would not make it ; What I learned from this is that not all the books of the world can be one hundred percent sure .
genesis10 says:
I researched everything during my breast cancer journey. For good reason. Fifteen years prior I had been given misinformation by a breast specialist. Based on this information I missed early diagnosis. This is what happened: I had a lumpectomy 15 years ago. Results came back benign. On my 6 week checkup Specialist advised me that I just had lumpy breasts and had nothing to worry about. What he should have told me was “I had dense breasts and need to be vigilant. I need regular mammogram as well as a scan” A lumpectomy is a risk factor for breast cancer”. Instead when I felt this lump – I naively thought nothing of it until it began to itch taking myself off to doctor thinking lump infected.
Brenda19Denzler53 says:
I came to inflammatory breast cancer with PTSD due to two hospitalizations when I was 5 years old. I almost died, back then, but surprisingly, I lived. Not without a lot of psychological baggage. I was pretty healthy for the next 50 years, and then….
I most certainly was a difficult patient. As I told my doctors (perhaps indelicately!), I was 100% afraid of the cancer, and 99% afraid of them and what they were going to do to me. Cancer won…but not by much!
Some of the difficulties we had could have been prevented by the institution (and the individuals within it) following through on their words. Some of it could have been ameliorated with a more broad-based awareness of how psychologically fragile I was, and a more concerted effort to meet me where I was, psychologically, rather than leaving it up to me to meet the medical establishment where IT was.
As a measure of how difficult I was, I developed a friendship with one of the oncologists there. He was not on my treatment team, but we shared other ties, and he became a trusted advisor for me. About six months ago he and I had a dust-up about something directly related to my PTSD, and he informed me that I had treated my treatment team very badly. I asked him for specifics, rather than general charges. He said, “Well, for starters, you fired at least three of the most gifted, caring oncologists I have ever known.”
In point of fact, I fired one oncologist. Not three. But that gives you some idea of what my reputation is there, when even a friend who supposedly likes and believes in me gets a very blown-up idea of just how difficult I was.
okbecca says:
Yes. I’m a difficult patient. My docs have let me know quite clearly that they don’t much care for me. Tough toenails. I’m not so crazy about them, either. My insistence and persistence forced them to diagnose a cancer they wanted to “watch” and then forced them to treat additional cancers they hadn’t found but that showed up on pathology after the bmx. If I had blindly followed their advice, the cancer would have killed me. It might still, but I’ve got a lot better chance now than the sure shot for death they were pushing. This is about survival, not winning the coveted Compliant Patient of the Year Award. I was fighting for my life, and I often felt that I was fighting for my life against my doctors. They were wrong. I was right. I wear their dislike of me as a patient as a medal that I won for bravery in the fight for my life.
Judi1952 says:
I recently fired my oncologist because I felt she was on to her next patient while she was with me. I wanted to take two weeks off of chemo at Christmas to enjoy the holidays with my family. She did not want me to take a break, but I insisted. My new oncologist isn’t perfect. He does sit patiently while I go over a list of questions about treatment. He does have a sense of humor and seems to be invested in my care. Time will tell.. I do get the feeling from my former oncologist’s nurses that I am considered a rogue patient.
ruthiema says:
Yes, another difficult patient. Back in 06 I declined over $100,000 worth of adjuvant therapy and have lived to tell the tale. Turned out that the AC chemo recommended, gave me only a 3% absolute better survival rate, not good enough. The oncologist tried for 2 hours to convince me, as my tumor was above 2 cm. Also, was Her2+ and so Herceptin was recommended, with a 55% benefit. After some research I found that I was given a relative benefit not an absolute which turned out to be 8%. Aromatase inhibitors were recommended, as well. The absolute benefit was 17% on that one, however, severe depression make it impossible to take. Some where, along the line, quality of life needs to be taken into consideration! I should add that neither of my tumors were found on conventional imaging, I found them myself in very dense breast tissue. Who knows what the future holds. All I know is that I am 10 years out and still kicking. We need to be given absolute statistics, on which to base our decisions. Most, I believe even oncologists, see a relative statistic and assume it is absolute. Too often we don’t get the real deal when making decisions regarding treatment.
AlabamaDee says:
I have had a lot of complications in my cancer journey. I must stay on top of my care. As a result of chemo I have a depressed immune system. I have had 2 bouts of cellulitis so I was put on monthly IVIG infusions. I clearly state in all my records that I cannot take morphine as it caused scary depressed breathing during hysterectomy recovery. IVIG infusions can cause terrible headaches. I was offered morphine by the nurse- she came to my chair with syringe in hand after I told her earlier no morphine. I refused it and “hit the roof” demanding explanations. Come to find out my onc ordered it because he was distracted (his wife was going to the emergency room at that time) I forgave him but the nurses have all labeled me difficult. I don’t really mind another label to go with survivor and fighter!
cajunqueen15 says:
If my doctor ever called me “difficult” or if I ever felt that was the unspoken message being conveyed, I would fire him. I have a lot of questions and I do a lot of research, but I am never disrespectful. He is busy and so I am I, so unless it’s an emergency, I can patiently wait for answers but the answers must come! Because I am so young, I have a lot of things to think about that perhaps the average cancer patient does not. My MO always does a great job of asking me what my ultimate goal is and we plan accordingly. When I push for something he does not recommend, he will usually meet me in the middle and explain why. The MO is not just another specialist for a cancer patient, it is often that person’s security blanket. After a particularly difficult round of chemo that left me highly agitated and in a lot of pain, pacing around the MO’s office and generally acting crazy, I had the chance to read his note about the visit over the shoulder of a nurse months later. To my surprise, there was nothing negative and he had reported my distress as legitimate and did not suggest that any of it was in my head. I will recommend my MO to anyone.
ChaCha19 says:
What a wonderful speech! A great perspective.
kylie50 says:
I was told I think too much which equals to a difficult patient. But I was thinking a lot because mammograms and ultrasounds had missed a 12 cm tumor twice. So I felt that thinking only a little would probably get me to an early grave.