Your Decision, Not Your Doctor's

In years gone by, doctors were regarded as gods. They knew all, were not to be questioned and patients should obey unquestioningly. Those days are gone. Patients are empowered. They learn about their conditions, they question their doctors, and they make their own decisions. They may rely on their doctor's advice but clearly make their decisions.

However, a recent study (because we always need more damn studies) found that doctor preferences for surgery type greatly influenced patient choice in early stage breast cancer surgery.

"Researchers surveyed more than 3,300 women with early stage breast cancer and 349 surgeons who treated them. About 16 percent of the patients had both breasts removed.

Only 4 percent of those whose surgeons heavily favored breast-saving surgery and were most reluctant to remove both breasts had the procedure. That compared to 34 percent of patients whose surgeons were most willing to do the surgery, the study found.

"That difference is huge. Even for a procedure that is very patient-driven, we see that surgeons account for a lot of the variability in the community and those surgeon attitudes really matter in terms of whether a patient does or does not get CPM," said study senior author and professor of medicine Dr. Steven Katz in a University of Michigan news release."

If the reasons given for a bilateral mastectomy are given as "patient peace of mind, avoiding conflict and improved cosmetic outcome", then why are the results so skewed to the surgeon's preferences?

Again, its your body and your decision and not your doctor's

New Research Says

How many times when you are talking to your doctor have you heard them say 'new research says...' or 'recent studies have shown....'? I get it all the time. And I am not sure I like it. Or how it makes me feel...

I realize being a doctor or other medical professional takes a lot of work and study just to get there and then they need to constantly work at staying up to date so of course they are reading research and following studies. But when they shove it in my face by saying that the new research told them this, I feel like they aren't practicing medicine but reading research.

I realize a lot of new information comes out for doctors through medical research - that's how they learn more. But I realize research isn't everything. I think of as 'flat'. A research project is done with a goal to prove or disprove something and it is done with a certain pool of people that meet specific criteria. I have never been eligible for a single research project (a/k/a clinical trial) because my medical background is too complicated. It doesn't reflect the real world where people may have multiple ailments, allergies, genetic make up, etc. Doesn't all medical research always end with 'more research is needed'?

A medical professional needs to keep up on the latest research but they also need to learn how it works in the real world with real patients. We are people with real ailments. I don't want statistics or research quoted to me. I want real medical advice which incorporates the research and my medical history and needs.

What An Oncologist Should Not Say to a Cancer Patient

We hear all about good doctors and not so good ones. But every so often we hear about the one's you really do not want.

Yesterday someone told me about the recent visit to her oncologist for her breast cancer treatment. She brought her sister with her for moral support and to help her out. I think she said her sister asked the oncologist something about that after chemo the tumors would be gone. And the oncologist replied with 'unless there are any other tumors'. I don't remember the exact words but the point is NEVER say that to a cancer patient.

Seriously, what was she (the doctor) thinking? You want your oncologist to be full of reassurances that after this nasty brutal treatment you endured that the chances are pretty good that you are on your road to recovery. Yes, we know that you can get more tumors at any time. Just because you are treated you are not out of the woods (ever). If that was my oncologist I would be shopping for someone else.

So if your oncologist says anything like this, run, don't walk, away and find a new one. Clearly that doctor doesn't quite get it.

The Bigger Problem Than Lack of New Cancer Treatments

I constantly read articles on the advent of new cancer treatments. I think they are wonderful. But they are not always instituted.

In 2014, new guidelines started to recommend sentinel node biopsies instead of full axillary node dissections to detect cancer spread.  They are told not to do axillary node dissections (AND) if the patients cancer is under 5 cm and if breast cancer was only found in one or two sentinel nodes.

"Sentinel node biopsies are done on early-stage breast cancer patients to stage their cancer and determine if it has infiltrated the lymph node system, a common signal of cancer spread."

Axillary node dissections (AND) are much more likely to leave the patient with lymphedema and limited arm movement. In 2009, my surgeon did a sentinel node biopsy first to find any malignant cells (which they found) before he went on with the AND (and now I have lymphedema).

In 2005, the guidelines then stated that sentinel node biopsies should be done first and if any cancer is found, then an AND should be done.

But still in 2017, ANDs are done regularly for women with breast cancer.

"In smaller hospitals, particularly in rural areas, many women are still being told they need a full axillary dissection. There are economic issues, geographic issues and education issues for both clinicians and patients..."

So after over 12 years of established practice, the new guidelines are not being followed by breast surgeons.

I think this is a bigger problem than lack of new research to cure cancer. Any new care standards should be more widely followed by doctors and medical centers. Why do we need new research if no one is following it?

I See Potential

I finally met with my new pain management doctor. I liked him. He actually read my whole file (or at least the most recent relevant parts - the entire thing is probably close to the size of the complete Proust) before seeing me. Then he listened to what I had to say. Asked questions. Appreciated my seriousness - I was actually taking notes - and that I go to the gym. I think I am happy

He did tweak some medications but asked me what I thought about it instead of just saying 'up that dose' or 'here's more pills'. I am going to have injections in my back in a couple of weeks and follow up after that.

There is such a difference when a doctor listens to what you have to say, discusses things with you, and seems like he really wants to make you feel better. The moral here is find a new doctor if you don't like your current one.

The Wrong Doctor

Synopsis of a very sad story: A man with horrible pain issues was cut off of pain meds by his doctor and as a result took his own life.

The details: The man's pain issues were treated by his PCP who was concerned about potential opioid abuse and cut him off of medication. His PCP was concerned about losing his own license as a result of tightening laws regarding opioid medications due to the current abuse epidemic. His pain, when untreated was so bad, caused him to commit suicide.

I think my big problem is that the man was not treated by a specialist who would have a better understanding of options for treating his pain. There is a reason there are specialists. After specializing in their training, they also spend time researching new medications and treatment protocols. Let's see, would you have your primary care doctor take out your gall bladder? Probably not. You see my point.

Personally I want a specialist for pretty much any chronic condition. Something that isn't going away ever requires a specialist.

There is a lesson to be learned here for everyone. If you do not get the treatment you need from one doctor, find a new one. I do not mean doctor shopping to see who is going to give you a prescription for something for you to abuse or distribute.

A doctor should want to work with you and help you with your problems. They should be open to discussion and share decision making. If your doctor cuts you off, find a new one. Don't suffer.

Again, it is such a sad story that this man was in such pain that he took his own life. My sympathies to his family. And to his PCP who cut him off? Thumbs down to you!

Doctors Should Speak Clearly

I really dislike a lot of doctor speak. They say things like 'with your medical history we need to be sure' or 'that really needs more research before we can tell if it would be right for you'. Then they try to add explanations about things that include the words 'that's a possibility' or 'we could consider that'.

What exactly does the word 'consider' mean? I had never really thought about that until I read this blog post that was mentioned on Facebook and then I got really irritated. If a doctor says they will 'consider' a potential treatment protocol? Does that mean they want to go look something up about it or they want to prolong my agony? Why can't they just say there's a new option for you that looks pretty good.

I think doctors get trained so much (and have to keep potential malpractice suits in mind) that they hesitate to speak directly about anything. They feel the need to insert all the fine print you see in a print ad for a medication to cover all the potential side effects or 'adverse reactions' into their words. Can't they just drop the doctor speak and talk clearly to a patient.

Its just you and your doctor sitting in an exam room or their office, and they have to speak in circles so there is no chance you could ever sue them for anything. Its unfortunate that some people feel the need to sue too quickly and even more unfortunate that some doctors abuse their power and some patients suffer as a result. The rest of us patients pay the price for that in the resulting doctor speak.

I think if doctors spoke clearly to their patients and talked to us like a person instead of as a potential lawsuit? And if they didn't use the words like 'consider' or 'possibility', wouldn't we all be better off?

Making The Change

Okay, I am going to do it. I have been pondering changing my pain management doctor and I have decided today (I am finally going to remember to) make the call. While I personally like my old pain management doctor and think he is a decent guy, I question the care I have been receiving.

I don't necessarily think it has been bad care. But I really want a new set of eyes on my pain management treatment. I want a new doctor to look at what I have and what hurts and then I want a new set of recommendations.

After nearly seven years with the same pain management doctor, I feel he just adds more and more meds and doesn't necessarily take anything away. One time he did take me off Lyrica (and later put me back on it), he told me I could just stop taking it and switch to something else (that I can no longer remember). That was probably the worst two weeks of my life. I was later told that I should have been told to cut down on Lyrica over a three week period and then start the new medication. He was later surprised that I had any issues with the transition and basically brushed it off.

He has also been a bit skeptical of any of my requests for new scans more than five years after the original one.

Today I will say good bye to him and schedule a new appointment with a new pain management doctor. To help with this transition, the pain management department has added a new doctor which gives me more options.

I am not a big fan of doctor flipping but realize sometimes it is in my best interests to do so.

Pain Management

There is a lot of information on pain management. I even have a pain management doctor. But what constitutes pain management? I have several prescriptions for pain management - patches, pills, etc. I go to the gym and exercise to help control my pain. I do regular stretching and exercises for pain management.

As you can see, pain management is not just about medication and injections. I want more than that. But I am not sure my doctor understands that. If I go to my pain management doctor and tell him my pain is acting up, he always tells me the same things:

• Don't sit around, get up and move.
• Here's more medication.

He never says lets take more pictures. Or 'let's see if there is anything else new'. Never. He just says here's more meds. Either shots or pills. I think I want more.

I did blog about this in a long day of doctor appointments. I saw his nurse practitioner about 2.5 weeks ago. All she did is order x-rays and upped my pills. My complaint is that I have new back pain higher up in my back. She is thinking fibromyalgia. I am thinking new issues. The x-ray did show some degeneration higher up in my back. I looked up what the x-ray showed and it has nothing exciting to say.

So why does my back hurt there? Fibromyalgia doesn't cut it for me. I know what fibromyalgia feels like. Trust me, I do. And my doctor and his nurse practitioner do not as they do not have it.

For the record the new x-rays were compared to my x-rays taken in December, 2008. That is the last time there were pictures taken of my back. It took an MRI then to tell us the whole story. I think I want an MRI to prove to me that there is nothing new going on. I think if you are being treated for something, you should get scans done periodically to make sure nothing is new.

I understand the over testing/over-diagnosis issues. I get that part. But since I was diagnosed with back issues in January 2009, I have been diagnosed with fibromyalgia, rheumatoid arthritis, have had several falls, and a few million other ailments.  Its not like my back pain has lessened in the intervening years. It has increased. You can't keep just upping the meds without further examining what is going on.

When I made my last appointment with the NP, I was told that my doctor has said that if one of his patients sees another back pain doctor, they can't go back and see him again. That's a bit to proprietary for me. I should be able to see another doctor in the department if I can't see him. Also, when I saw  his NP that is the second time in all these years that I haven't seen him. One other time, I saw his physicians assistant and that was years ago. I think I'm done.

I go back and see the NP next week. If she doesn't send me for an MRI or other scans, I think I will find a new pain management doctor.

Doctor Abuse

I have been saving this post for when I got around to it. But then an article about a local doctor popped up on my radar. And I am now really appalled.

What I am talking about is not abuse of doctors by patients but sexual abuse by doctors on patients. Its under reported and under penalized.

A recent study came out showing that sexual abuse of patients by doctors is wide spread. I had no idea.I find it appalling.You trust your doctor and then they violate the trust. Who are you supposed to report it to? The nurse who works for them? The hospital where they work? The medical board? You don't really know. And you are ashamed.

You trust your doctors because you hire them to make you feel better. And it is expected that they will touch you. And you are willing to take your clothes off for them. If you think about it, when would you meet a strange person and go into a small room with them and then take off your clothes? In any other context that would just be really weird and asking for trouble.

So you can see this could easily lead to impropriety. But we trust our doctors and assume they will do the right thing and not be inappropriate. Most doctors I am sure are professional and not going to do anything inappropriate. But unfortunately there are always those rotten apples.

So as a patient, what can you do? If you feel something is inappropriate, speak up, question it, and report it. Who should you report it to? Start with the hospital where you are a patient, the medical board, and the police if you really feel violated. Do not hold back.

And find a new doctor. There is no reason to stay with a doctor who is inappropriate or makes you feel uncomfortable.

When doctor's give orders

I ran into two instances where doctors were giving orders, to patients. Basically they were giving the patients orders to obey them and make them toe the line.

In one instance a friend of mine who was a heavy smoker was told he had to prove he had quit smoking for a month before the doctor would perform his back surgery. Yes, I know smoking is a nasty dirty habit. Yes, I know it can do horrible things to your lungs and the rest of your body. Yes, I know quitting smoking is a very good way to improve your health.

But, the doctor had his surgery scheduled and then he was in a fender bender so it had to be delayed. Now the doctor won't schedule his surgery until he has quit smoking. So if my friend needed to quit smoking because of surgery concerns, why did the doctor not make this an issue before? Why is it now? This does not make sense.

Then another friend who is a grandmother and is long since done having children wants to have a hysterectomy. She even has fibroids and her doctor says no. She's not ready? What? He's not giving her a real answer.

In both cases, I feel that the doctors are asserting their opinions without thinking of the patient's concerns. This is not right. I think both patients should find new doctors. I would not put up with that crap from any of my doctors.

Non-impartial doctors

Do I expect my doctors to be my best friends? No. But I do expect them to impartial and have no biases when treating me. I try to do my part - show up for appointments, take my medicines are directed, and take fairly good care of myself. I have had a few doctors which I have felt I didn't really gibe with but in my mind, I really want good care, not buddy-buddy.

A new study (because we always need new studies) shows that more than 40% of doctors state they have biases to certain groups. Some of those include obese patients, patients who do not speak English, or have emotional problems.

"The most common reason that doctors said they stereotyped patients was because of their emotional problems, which elicited biases among 62% of physicians, followed by their weight, which 56% of male and 48% of female physicians said provoked biases for them. Other triggers were patients' intelligence, language differences, insurance coverage, age, income level, race and attractiveness."

Hmmmm..... Well doctors are human beings and I think every person would admit there are just some people that make them recoil a tiny bit. I admit I am not perfect and have my own cringe factor for some people - like the scary homeless guy on the subway yelling obscenities. (I realize that their problems are probably worsened by lack of medical/psychiatric treatment and they should not be blamed for their issues but I just don't want to sit next to them.)

The problem is that when doctors have biases, whether conscious or subconscious, the patient usually gets a lower standard of care. That's a real problem. Its not ethical for doctors to provide for different standards of care for different groups but if its a subconscious bias, how do they stop themselves.

Is that pain only in your brain?

I have been pondering this question for a couple of days. Some one posted a comment on my blog the other day and asked about this:

"How do you know when some of these pains are not in your head? I have mistook mental discomfort for physical problems."

I have often pondered this question for myself. Is what I feel real pain or is my brain making it up? How can I tell all my pains are real? Am I over treating my ailments? How can I have so much pain? I sometimes run little experiments with myself (don't tell my doctors!) to see how my medications are working and how my pain levels really are. Sometimes I just forget a medication and I often quickly find out what is real and how much somethings hurt. Other times I will delay taking my next pills and see how I am feeling.

I thought about this, hard. I know if someone has a limb amputated they often may have 'phantom' pains. The missing leg still produces feeling of pain even after it is gone. I know there are treatments for this as well.

But I also feel strongly that doctors should never ignore patient's statements on having pains. For years, male doctors often dismissed women's complaints on menstrual cramps. They were proven wrong. But if a patient complains of pains often and a doctor does nothing, you need a new doctor. 

However if its the other way around and the confusion is as the commenter noted above - mental discomfort being mistaken for physical pains - that is a different problem all together. In quickly asking the all-knowing Dr. Google, you can find that it is a recognized emotional issue that causes significant anguish.

In my non-medical opinion, if there is a question as to whether the pain is real or in your head, you would really need to do some personal and medical research, working with a good medical professional who meets your needs. Because even if the pain isn't real, there is still an issue that needs to be treated.

I am unsure

So I have had the same doctor for pain management, Dr G, for a good six years now because of my back pain and later fibromyalgia. We have had a good relationship and he has helped control my pain. I have always liked him and thought he was doing right by me.

I have a friend, L, who has been also going to him for pain management for her issues, which have included curvature issues with her spine. We have compared notes and treatments in the past and both like him.

I had lunch with L this week for the first time after some extensive back surgery last spring. She told me she will never see Dr. G again. He continued to treat her pain, never referred her to a surgeon or anyone else, or sent her for more scans. As a result, her back surgery was much more extensive than if she had had the surgery five years ago. She is very mad at him.

L got a new primary care last year who referred her to a surgeon for her back pain who told her she should have had surgery years ago. But Dr G is an anesthesiologist so he didn't ever refer her to a surgeon.

Now I do not know what to think. Dr G has always told me there is now surgical cure for my pain and I have believed him. I have also done some research on my own on potential back surgery and found that back surgery is very iffy in most cases so I have continued to agree with him. I know every patient is different but this makes me unsure about the whole situation.

I find this very disappointing and disheartening in that we assume a doctor has our best interests at heart but L clearly had a different experience. Dr G believes in medicine to treat pain as that is what he does as an anesthesiologist. A surgeon always believes that surgery is best because that is what they do. Patients get stuck in the middle. And we want to believe that what our doctors tell us is in our best interest.

I think I need to shift my focus from believing Dr G is always correct to doing some double checking. And I have a plan. I see Dr G this coming Friday as a follow up. But then I see my new primary care in a couple more weeks and I will talk to her about my pain issues, particularly my back. I do not want unnecessary surgery but I do want to do whatever I can to feel better.

We must trust our doctors but sometimes we need to do a little double checking. I don't like that part.