'A Patient Voice' Community

They really don't want to hear your opinion if you are in a scientific field and you are easily as smart as they are and you do not spinelessly fold to their best guess when they don't know for sure what is going on. They really seem to dislike well educated assertive patients. We are way too much work.

PeregrineNeel:

I like you. Dump the doc who doesn't like your opinion. It's your life, and I assume there is more on your agenda than protecting this doctor's ego.

Best,
R.

Although I would urge any person facing a serious medical crisis to actively participate in their care it makes me furious that this is required of all us. After my Breast Cancer diagnosis at the age of 43, I also 'co-directed' my care. The original prognosis indicated a poor survival rate and the need for aggressive chemotherapy ; this prognosis was based on one incorrect lab result and a young oncologist that did not have the experience to note that this test result was discordant with all the other result results but did have the hubris to refuse to consult with more senior physicians. Luckily, I had the resources to get second opinions at Dana-Farber and Fox Chase Cancer centers that saved me from a treatment regime that would have unnecessarily substantially reduced my quality of life. Following this, the local oncologist I had selected for my follow-up is a professor at a medical school; during my first (and only) visit she asked if I was current with my mammograms, revealing that she had not bothered to review my chart prior to the consult as this would have indicated that I had a bi-lateral mastectomy and so had no need for mammograms .
Throughout this process I have rigorously investigated my diagnosis and treatment options and have battled with medical professionals and insurance companies to pursue a path of active improvement of my health (as opposed to simply taking Tamoxifen and crossing my fingers). This active involvement has not resulted in my feeling empowered but rather anxious and exhausted. We must be able to trust our physicians as most people do not the time, money, energy or education to co-direct their care. It is patently unreasonable and grossly unfair to expect the elderly, the frail, the poor and the chronically ill to successfully investigate and direct their treatment. Medical professional are paid tremendous sums of money and are given huge deference in our society and although there many are gifted, caring professionals, too many have abdicated their role as health care leaders and are simply technicians repeating the sales pitches of pharmaceutical and device manufacturers. We cannot release them of their responsibility to plan and provide evidence-based, carefully administered care. For too long, we have allowed the medical industry to put profits in front of patients; expecting patients to research and negotiate their own care is one more way that we further this injustice.

hello, all --

generally i love my primary dr, but three years ago, after almost two months of seeing her twice, seeing another dr in her practice twice (she was not there), seeing a second other dr in her practice once (she was not there), going to a walk-in clinic (she was not there) and being prescribed hydrocodone for the pain (which was the first thing that came even close to reaching the amt of pain i was having), and still getting no sustained relief from what i was describing as the most excruciating sinus headaches i had ever had in my life, i finally more or less demanded that she send me to an ENT specialist, who immediately did a CAT scan, said there was nothing wrong with my sinuses, and told me to get to a neurologist. i called my primary dr's office for a referral and was sent to my first neurologist.

i felt that my primary dr should have thought of sending me to an ENT specialist much earlier; i don't see why i should have had to decide all by myself that it was time for me to see an ENT specialist. it turned out to be migraines!

i almost quit going to my primary dr because she is gone so much, but my sister persuaded me to give her another chance because i've been with her for eight years, usually she is right on track, and it is such a hassle to change drs.

i loved my first neurologist too, but when i called to renew a prescription, was told for the first time that she was on medical leave, then was told repeatedly for a year that no one had any idea if/when she might be back, i got mad and went to my second neurologist, who was very highly recommended by every other dr i knew. it turned out she was pregnant; maybe that was info more personal than she wanted to give out, but i really felt like i had been given the run-around when no one seemed to be able to tell me anything, including if/when she might be back.

i loved my second neurologist too, but when i complained for at least two months about severe eye pain after i started taking topamax as a migraine preventive and asked if topamax could be the cause, he reassured me that it could not possibly be the topamax and said i should go to an ophthalmologist, who found nothing wrong with my eyes and said i should get back to my neurologist immediately, who said he didn't know what it was be but that it could not possibly be the topamax. i finally looked up the side effects of topamax myself and found that indeed it could be the topamax, quit the topamax on my own, and got instant relief.

after that, i felt i could no longer trust his expertise. i didn't necessarily expect him to know about this side effect, because it is a very rare one, but i thought after i complained repeatedly about the eye pain, he should have looked up the side effects just to make sure instead of sending me to the ophthalmologist, and then when i continued to complain about the eye pain, he really should have looked up the side effects. i don't see why i should have had to track down side-effect problems and decide what to do about them all by myself. i could have gone blind! so now i'm back with my first neurologist, but i made sure she knew why i had left the first time. she did apologize.

i guess i fall in love with my drs too easily. i want to trust them, and i don't think that's unreasonable. i'm willing to cut my primary dr some slack because no one can be expected to pick up on everything right away; however, i had been seeing my second neurologist for two years and was truly appalled -- and really frightened -- by what happened with him. he's a specialist, for goodness sake, and i hold them to a higher standard, justifiably or not.

usually i'm very patient (i'm not sure if that was an intended pun or not, it came out with no forethought) -- i don't expect my drs to know every single thing there is to know -- but i've gotten more aggressive as my aches and pains have gotten more serious!

-- susie margaret

I agree and am having difficulty with one of my oncology doctors. She thinks she is God and that I should not question her. I do a lot of research and have many questions. I have stage four colon cancer, have had several surgeries and at the present am cancer free (according to all the recent tests). I also have a male oncology doctor that is terrific. However, I have an hepatic pump and he is not trained in this area of treatment. I have searched and searched for another doctor that is familiar with the pump, within a reasonable distance from my home, to no avail. The doctor who is familiar with the pump is so arrogant and obnoxious, along with some of her staff, that I am considering stopping the pump treatments and continuing with the standard ct tests etc. under the supervision of my male oncologist. I want to participate in my care and to be informed as to options available. I am a human being and want to be treated as such instead of just a number or participant in a study.

I'm a 60-year-old expat living in Geneva, Switzerland, who had a colon tumor. Tests said benign, but then it was malignant when removed. More cancer found in that operation. Another (longer, more intensive) operation to remove the "more"-- with a final diagnosis of two primary cancers that developed simultaneously (lucky me??). During all the operations and testing and analyzing, the doctors (team of surgeons plus oncologist) called on colleagues worldwide for opinions and advice. Most of my appointments last at least an hour (some intro ones more), all in English. They are delighted at my questions and descriptions of symptoms or reactions (now doing 6 months of chemo), saying that my involvement in my treatment makes it easier for them and contributes to the success rate. My husband and I contacted all possible sources for advice before the operations and treatment (it wouldn't be easy, but we wanted doctors well-respected in their fields who also fit with us personally-- we have them! Fortunately, as health insurance is mandatory nationwide here, 90% of the costs are covered (after deductible)-- but managing payments and insurance claims has become a full-time job. Although it's time-consuming, at least it's not ruining us financially (as well as bodily). I'll also mention that the hospital staff and oncology team who do my chemo have all been wonderful-- interested in me, my concerns, my symptoms and reactions, and patient as we try to communicate in both French and English. It's not easy, but it is worth it-- I feel completely and reliably cared for! I wish everyone could have this when dealing with a life-threatening disease.

What a nightmare! But you are right-- you deserve a doctor(s) who listens to your symptoms and has the experience / expertise to recognize side-effects from prescribed medicines. Sounds like you are doing all the right things (and more)-- but have some doctors (who are only human, but who owe us the care we ask / are paying for) who have dropped the ball with you. Keep searching-- the good ones are out there... and the others? Well, advise friends who seek care of your not-so-positive experiences with those doctors who let you down, so that they don't have to go through the same process!

i'd love your opinions im a 35 yr old woman with lymphoma and just found out that after having sx to cut out 7 areas of skin lesions from the lymphoma that my oncologist wasnt even aware id had the sx or the results thereof and my pc dr told me i was cured at which my oncologist scoffed at the mere notion, what are my rights to walk away from all (thjeres 4) my doctors and start fresh with all new

If it was me, I'd be asking a lot of questions of them all- why aren't they communicating (you should be aware and making sure it's happening, but it should be happening automatically). If you don't like the answers, walk away-- shop for new doctors. Go for recommendations. You have no obligation to stay with a doctor you don't trust. Trusting is a huge part of conquering this!! Make sure you read all you can on your cancer and its treatment so you know the questions to ask. You're 35 with a lot of life ahead-- take control and make sure you get there to enjoy it! Good luck and let us know how it goes!

I agree. I believe they see these type of patients as a threat or at the least an annoyance to their smooth progress along their usual path of ignorance. All doctors seem to forget they are just "practising" and assume they are the only experts who can deal with the disease at hand, instead of taking the position that the patient is the only one who is in a position to have the most knowledge about the condition that can help the diagnostic process. TV shows like House (although I am a big fan) do not help much in this regard unfortunately simply because they prove so much that some patients may omit certain important details. But on the whole, even pre-House, doctors have always had a bad bedside manner! There are few who will consider seriously that a patient may have something valid to add to the discussion of their own diagnosis. Some patients may come across as agressive too, but that should hardly be a concern when you consider (from the poll results and general knowledge) they already have the idea the doctor does not want to hear what they have to say.

You are correct. We shouldn't have to co-direct our care but the current state of health seems to dictate that we must, and until this changes, what can we do? I can imagine how exhausting it is from your description, and it is true that most elderly patients will not be able to accomplish what you did. Perhaps the time has come for patient advocates who can seek the best for the patient independent of the doctor/drug company? Who will foot the bill for this though? I wish I knew the answers. Things should not be allowed to remain as they are.

I had to keep going back to the doctor's office complaining about my back until they finally did an MRI of my entire spine. That's when the found the tumor in my spinal cord - inoperable, but the were luckily able to radiate the heck out of it and appears to have killed it - it's been 5 years -so I'm a 2X survivor -malignant melanoma, and the spinal tumor.... So, KEEP PUSHING until you get an answer that satisfies your questions. It took me a year, a year that I could have been able to keep more of my mobility if found at first, now I'm stuck in a wheelchair for any kind of distance, like walmart.

Unfortunately, we now have to manage our own care. It's not like the old days when the doctor knew everything and you could trust them implicitly, now days you HAVE to research your conditions, make suggestions, generally be up to speed on your ailment... all the possibilities and treatments would help. If you think your doctor's wrong - GET A SECOND OPINION from a doctor not affiliated with the first one. I had to, and it saved my life, so be sure your doctor's doing you right.

Don't forget who is working for whom... They are working for you, they are taking your money, aren't they? So, if they work for you, then darn it, they better answer all my questions to my satisfaction, and listen to me when I have trouble, I mean really listen,you can tell the difference. You don't like your service, dump them... they sure won't care.