Recommendations vs. Medical Standards vs Patient Preferences

How often do you get your teeth cleaned? Every six months, just like the ADA reccomends of course. Unless you have bad teeth like me and go every three months (and I hate having my teeth cleaned). There are guidelines that tell us all sorts of things - get the oil changed on your car, get a flu shot, get a colonoscopy, and get a mammogram.

We usually follow these guidelines because they give us structure and a sense of how often we need to do these things. We listen to them because they are all in the 'preventive' category - they help make us more likely to live longer and healthier. We may not understand all the reasons why but we obey like lemmings, until they change and we get confused if we don't understand why.

But what if 'those people' who make these decisions about what to do when took into account what the patients preferred?

In 2006, the US Preventive Services Task Force (aka 'Them') issued a statement that women over 50 should get mammograms every two years, unless their medical history dictated otherwise, instead of every year. And nobody thought to ask the patients what they wanted.

Until a recent study announced at the annual meeting of the  Radiological Society of North America), which stated that 70% of women prefer annual mammograms. The reasons for concern over annual mammograms is for potential harms - false positives, cancers that would never become problematic, etc. The women asked were not as concerned about false positives or other harms than expected. This percentage could also be residual from women who were just used to annual mammograms and didn't understand why this would change.

If medicine is about the patient, and not about guidelines, insurance companies, and doctors, more change needs to happen. Personally I think if standards are changed, patient education needs to happen.

After a mammogram, the patient should be given written information on why they do not need to come back for two years and this is  why - what are the dangers, aka potential harms. Same thing after a colonoscopy or flu shot, etc. The mechanic who does an oil change puts a sticker on your car window to remind you when to come back. That is the only way to involve the patients and educate them as to why the change is happening.

Breast Cancer Changed Me Too

I like Joan Lunden. I mean I like what I saw of her on TV. She was very professional and did a good job on the air. I am not sure I would have 'volunteered' to have a mammogram on television, even if it was to raise awareness of breast cancer screening.

Now, three years after her diagnosis, she is through with treatment and says that having breast cancer changed her. She has started a website to educate women about the benefits of early detection.

Then another woman, much younger, Yolanda Jenkins, has also been diagnosed with breast cancer. She has created a platform to encourage young women to get checked and wants to get the age for mammograms lowered so younger women have access to this critical tool.

These two women make me think should I be doing something different? I mean I have a blog that's about me. I don't run around educating people about cancer. I know I talk about breast cancer and other cancers but I don't educate or advocate or anything... Should I be doing something different? I am not sure I could.

The Importance of Learning About Your Health

Can you answer these three questions from the Brief Health Literacy Screen (BHLS): 

1. How confident are you in filling out medical forms on your own?; 
2. How often do you have someone help you read hospital materials?;
3. How often do you have problems learning about your medical condition because of difficulty understanding written information?

They appear simple. Many people I think would say Very, Never, and Never. But then if you add in the complication of not knowing English very well, a lower level of education, or just being sick and not clear headed at the time, those could change easily to: Not at all, Often, and Frequently.

What is the result of this kind of problem? Longer hospital stays for one:

"Using the BHLS screen, 20% (1104/5540) had inadequate health literacy. Patients with low health literacy had an 11% longer average length of stay (6.0 vs 5.4 days). Among men, low health literacy was associated with a 17.8% longer length of stay, and among women, low health literacy was associated with a 7.7% longer length of stay."

Longer hospital stays result in more exposure to germs, bigger bills, less rest for the patient (who ever gets a good night's sleep in a hospital) which ends up with more patient stress.

A recent study showed all this and more. Read it here.

A Post for Every Oncology Medical Practitioner

I have often spoke about how nurses, doctors and other medical practitioners just don't ''get it' because they have never been through it themselves. They also don't understand what they do not understand, because they haven't been there.It has been my greatest desire to have medical practitioners who have had the ailment they are treating. Especially oncology medical practitioners.

An oncology nurse recently wrote an apology letter to all her patients. She had not 'gotten it' in all her dealings with patients in her care. Now she knows what she did not get because she has now been diagnosed with a stage III colon cancer. This unfortunate diagnosis now helps her in her dealings with patients. Her letter begins with the paragraphs below. But please go read the entire letter yourself.

"Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.

This thought has been weighing heavy on my heart since my diagnosis. I’ve worked in oncology nearly my entire adult life. I started rooming and scheduling patients, then worked as a nursing assistant through school, and finally as a nurse in both the inpatient and outpatient settings. I prided myself in connecting with my patients and helping them manage their cancer and everything that comes with it. I really thought I got it- I really thought I knew what it felt like to go through this journey. I didn’t.

I didn’t get what it felt like to actually hear the words. I’ve been in on countless diagnoses conversations and even had to give the news myself on plenty of occasions, but being the person the doctor is talking about is surreal. You were trying to listen to the details and pay attention, but really you just wanted to keep a straight face for as long as it took to maybe ask one appropriate question and get the heck out of there fast. You probably went home and broke down under the weight of what you had just been told. You probably sat in silence and disbelief for hours until you had to go pretend everything was fine at work or wherever because you didn’t have any details yet and wanted to keep it private still. You probably didn’t even know where to start and your mind went straight to very dark places. That day was the worst. I’m sorry. I didn’t get it."

Once you read the letter, please share it with your medical professionals. We can help educate our medical providers and perhaps this would help them understand our side.

Pre-Treatment Education

So you get a crappy diagnosis, I have had a few, and you instantly want your body fixed! Quickly you rush to the surgeon and get the nastiness removed. With cancer, after surgery you usually get more fun with treatment such as chemo and radiation. Then pow, your body starts protesting and you instantly end up with multiple side effects, including ones that could cause permanent damage to your body and require additional surgeries.

This scenario is not that uncommon with breast cancer patients. Women want that thing out! They have surgeries and chemo and radiation. I have friends who ended up with problems with their mastectomies which required multiple more surgeries. Some have suffered through problems with the 'donation' site on their bodies where tissue was taken to create a 'foob' after a mastectomy. I have a friend with permanent cardiac damage as a result of chemotherapy. Me, and others, have lymphedema as a result.

The rush to surgery means lack of attention to potential side effects and body changes, both physical and emotional. Not enough attention is placed on the after effects. I have always thought that with both my breast cancer surgeries and treatment and many other medical procedures.

This morning I read over at Hen Backtalk and found a link to an article talking about what kinds of tests to request before treatment. While the doctor, author of the article, focuses on specific tests before breast cancer chemotherapy. But I believe this is true, I think this is a very valid point. Not enough focus is given to this part of the medical decision making process.

Doctors and other medical professionals usually can't give us all the details because they usually have not had the treatment protocol themselves. I think if you are facing a major medical decision, especially cancer treatment, find someone who has been through this themselves before making any decision. Cancer surgeries are usually focused on removing as much of the cancer as possible and getting clean margins. So with breast cancer, for example, you might end up very 'lopsided' due to the need to get the clean margins. You can't have enough information before major surgery.

This is where support groups and online forums can be so helpful. Don't be shy, get out there and ask your questions. Find someone who has gone through the procedure and decision process you are facing to learn about side effects and after effects in general. Education is always good.

When Will I Learn?

The answer is not anytime soon. Yesterday I went to a craft show and had a booth. I had a blast. I sold tons of my stuff and had a lot of fun at the same time. I might have even made a new friend.

But obviously I am not the best candidate to leave home at 620 AM to get to the show at 7 AM, set up my booth, sit and stand for hours, and break down my booth, and drive home to get home at 530 PM. I also lifted things, dragged things, set up folding tables and a canopy. I pulled things out of my car and then put them back in. I did all those things my doctors are telling me not to do - lift, carry, twist, push, pull, etc.

Today I am paying the price. I am sore and achy. I am sore in places that haven't hurt in recent years. My right knee, which has a partially torn ACL for the last 15 years, is now complaining. Significantly. I think I need ice and elevation for a while to make it feel better. Then I can tell you about the place in my back which had injections on Thursday. Its very unhappy.

So when will I learn? I need to learn that my body is not built for any of this any more. I need to learn to be a nice sedate quiet person. (I almost typed 'sedate little old lady' but I am definitely not ready for that classification. I want my tombstone to say something along the lines of 'that was one hell of a ride'. And I doubt I will ever be called sedate, unless it was in the context of being sedated, queue the Ramones song now.)

I may need to sedate myself to get through the next 24-48 hours. 

But I really need to learn to stop over doing things now so I stop needing to recover from them. 

Medical School

Although I was designated the office doctor last week, I am now going to medical school. It started yesterday and continues for the next 7 weeks. Someone referred me to it a while back and I registered at canvas.net and now it starts.

I was traveling yesterday so I haven't had a chance to start my first class on Anatomy and Physiology. It should take me an hour or so each week. I am looking forward to it. The other courses are a second week in Anatomy and Physiology, Cellular and Molecular Biology, Immune System, Infectious Disease, Neuroscience and (my favorite) Cancer Biology before finishing up.

Why am I adding to my busy schedule with mini-medical school? Because I hope it will help me understand my body and why it keeps on having so many issues. I figure I am a prime candidate to learn about medicine as I seem to have a lot of interaction with the medical profession.

What I really want is a cure for all that ails me but I doubt that will happen anytime soon. But in the meantime, I can be smarter.

Standing up to the idiots

Okay I finally have a real resolution for the new year. I feel I can sum it by saying 'standing up to the idiots'. What I mean by this is that I no longer feel the need to politely step aside and keep my mouth shut when idiots try to tell me what to do.

With my health, I get lots of  'advice' on how to 'cure' myself or to rest up so I can participate in an activity. Now I feel the need to stop being polite and to speak up and politely tell them to be quiet. For example, if I have a back procedure, it is not going to cure my back. Its going to relieve some pain for a while. I repeat, it is not a cure. There is no cure for me. I am stuck with my health the way it is.

My goals are to slow progression of my RA, keep my fibromyalgia under control, and hope there is no cancer reappearance. I think I have real expectations for my health.

The idiots don't understand. I don't get to go to a lot of events and do things that involve much standing or walking or much of anything. Their frequent advice on maybe resting up ahead of time doesn't work for me. If I do too much, I pay the price by resting for a few days to recover.

It is time for me to stand up to the idiots. Maybe I would do better if I consider it educating them.

Why don't we all have cancer?

As a cancer person, do you ever have those 'why me?' conversations with yourself? Well apparently everyone should really be having the conversations with themselves of 'why not me?'

I found this video on twitter, thanks to Matthew Zachary of Stupid Cancer. Its nine minutes of worthwhile watching. The host is a fairly interesting presenter.


So what did you think? Why don't we all have cancer?

Trying to scare or educate us?

I like these little articles found all over the internet: "signs of  [insert disease name here]". I just found one this morning for signs of oral cancer.

Oral cancer is not something that has crossed my mind really. A few years ago I had a pocket appear in the back corner of my mouth and the dentist (stupidly) said to me "Well it doesn't look like cancer but you really should have Dr F look at it to be sure." Note: never say that to someone with cancer.

But these are the signs of it so you should see your dentist regularly:

• A sore on the lips, gums, or inside of your mouth that bleeds easily and doesn't heal
  
• A lump or thickening in the cheek that you can feel with your tongue
• Loss of feeling or numbness in any part of your mouth
• White or red patches on the gums, tongue or inside of mouth
• Difficulty chewing or swallowing food
• Soreness or unexplained pain in your mouth, or feeling that something is caught in your throat with no known cause
• Swelling of the jaw causing dentures to fit poorly
• Change in voice

Now that I have this list, what should I do? Of course there are little lumps and bumps inside my mouth that I can feel with my tongue. I don't have dentures so that one is out.

Now that I have this list I can obsess over it for as long as I can remember it.... That's the biggest problem. We get a list of signs to look out for whatever the ailment is. We read it. We think about it. Then our brains are full and it falls out, or we convince ourselves we have it and rush off to the medical professional insisting that we are going to die!!!!

Scared or educated? I'm not sure.

So what do those test results mean?

A new study shows (because we always need more studies) that women with breast cancer want the genomic tests but then do not understand the results.I am not surprised by this at all. This applies the results of the Oncotype DX, Mammaprint, and Mammostrat tests.

When I was first diagnosed with breast cancer the Oncotype DX test had just been made widely available. Many women who were also hanging out on the online websites for breast cancer support were getting their Oncotype DX test results (of course I was not eligible for the test) and questioning their results.

• Some women would say this is my result and this is what the doctor recommends, do you think I need a second opinion or something to that effect.
• Another group would say these are my results and they are in the middle, what should I do?
• Finally, there would be more women saying, these are my results, did anyone else have these results and what did they do?

It was clear there was a lot of lack of understanding of the test and what it meant. I think the first point is that doctors clearly need to better explain the tests and what their results mean. But we can't blame the doctors for all of this. Women, or any patient who is faced with a new diagnostic or predictive tool like this, need to understand that it is just one more tool in helping to come up with the best treatment plan for them.

Genomic tests are going to be part of the diagnostic and predictive tools available in the future. Education needs to be done for the general public to understand their potential impact and what they mean. To me they represent the next step in understanding the many subsets of different diseases.

Breast cancer is not one disease but hundreds. Every little test like this can help set up the correct treatment plan for each patient and prevent over and under treatment. Greater education needs to be given so that patients better understand that each patient is different and treatment plans are not going to be the same, even if you are treated at the same hospital by the same doctor.

I am skilled

In the past few days I have had the opportunity to share knowledge and decipher the oncology department. It turns out hanging out in the Cancer wing gives you ins on all sorts of special information:

• I know the receptionist - not just because she has been there since I started going there in 2007 but she also used to work out at the gym I go to where her cousin was a trainer. 
• I could explain about the special amenities in the oncology waiting room - the lunch and snack trays that come through earlier in the day.
• I know they do validate parking - its the least they can do for their oncology patients.
• They have the nicest nurses and staff who regularly go the extra mile (I'm  not saying that other nurses and staff don't do this but there seems to be extra concern and caring in oncology - this may be due to the frequency of patient visits).
• I know the best place to park which involves the least walking to get to the far away oncology wing.
• I know all the credible online resources and which ones to avoid. 
• I could spell most of the big words the hematologist shared with us.
• I knew what questions to ask to get to the next steps.

So I guess cancer gave me some skills. I am an educated patient in some respects. And it wasn't about my health.

More about fibromyalgia.

One Minute Medical School on Fibromylagia, in case you were trying to figure out what it is.

By the way, I hate swimming so that's not happening.

The medical roller coaster is not just about cancer

I admit I have been struggling in some ways for the past few months in terms of that lovely medical roller coaster. So often I think of the medical roller coaster as being focused on cancer - because cancer has such a 'fatal' 'terminal' 'deadly' 'life changing' connotation. I think 'life changing' is the best term here. A cancer diagnosis is life changing.

But also other diagnoses are also life changing. Like rheumatoid arthritis and fibromyalgia. When you are diagnosed with cancer, you usually look the same on the outside unless in active treatment. You do your thing - work, exercise, socialize - and have a life.

But with rheumatoid and fibromyalgia, you look mostly the same, might be moving a lot slower and hobbling around. But you are on the same damn medical roller coaster for a life long adventure.

The ways to calm down the medical roller coaster include knowledge, self education, exercise, and maybe even blogging.

I am coping with the medical roller coaster and I think I have been handling it worse than usual these days. I need to get my ailments under control both physically and mentally. I'm a work in progress here.

What kind of doctor?

So who gets to be called doctor? When I hear the term doctor in a medical setting, they damn well better be a medical doctor or psychologist - someone who can make me better. I know there are lots of others in the medical world with a doctorate but they aren't medical doctors. These include nurses, physical therapists, and more.

I find the use of the honorific doctor to be overused. I think professors can use it or other people who promote education, learning, science or things like that. One of my aunts and two of my uncles were professors. We never called them doctor.

But in the business world it can be over used. I worked for a scientific instrumentation company in the 1990's. It was full of people with doctorates. Only a few bothered to use their title. Some of them put their degrees on their business cards. Most of them could have cared less. There were a few (egotistical) co-workers who were royal pains as a result. One of them was a jerk. Another one had two doctorates and a law degree. We called him doctor-doctor-lawyer-a*****e because he was such a pain in the rear end. On a slightly more humorous note, one coworker with a doctorate in physics said to me he used to be cool even though he had his PhD. I offered him tape for his glasses. And according to HR, the more education people had the less they could understand the health insurance policy. HR had to explain it to their spouses. And their lack of common sense could be astounding compared to their level of education. But they were nice people who were very smart.

In the medical world, I know there are lots of people who are required by their positions to have their doctorate but that doesn't mean I am going to call them Dr. Their job title is not a doctor of anything. Their job title is nurse, physical therapist or whatever.

Cultural Competency

What is cultural competency? Well I could google it or look it up in wikipedia but its too early in the morning (and I am slightly distracted because I really want to see Kate's wedding dress). Therefore I will define it as I understand it.

In my opinion, cultural competency is being informed on other the socio-economic and culture issues of cultures other than the one in which you grew up. For example, is a big city person familiar with life on a farm? Or someone from suburban American familiar with life in a third world country? And its not just being comfortable with the other lives but aware of the differences in life style, social constraints, religious pressures, economic quality of life, etc. And to understand that these differences are theirs and you cannot force them on you.

There are thousands of examples of this but a few are - here in the US almost everyone has access to clean water and we dont necessarily understand that others do not and its implications.

Being culturally competent is also important to doctors and US medical schools are finally becoming aware of this and will begin requiring it of medical students. They want fewer science nerds and more of the fluffy stuff.

I think this is a wonderful idea. I don't want a geek to take care of me, I want someone who has a clue of how life really is. They can be a geek too if they want. Just because you went to medical school, doesn't mean you are any better than me, or your way of life is the same as mine.

I mean how often have you run into an older doctor who is 'old school' in their practice and thinks that they are a god and you are supposed to kiss their feet and do what they want. Or a doctor who doesn't understand that your lifestyle is not the same as theirs and you can't quit your job and stay home simply because you are sick or had surgery. Or a doctor who is dictatorial and tells you its 'their way or the highway' essentially. Or a doctor who doesn't understand a welfare mother can't afford fresh fruit and vegetables all the time.

I know there are different personalities and cultures out there and the differences between all of us are what makes the world interesting instead of boring. However a doctor who makes lifestyle suggestions and doesn't understand when a patient cannot comply, not that they don't want to comply but that they are not able.

I have one doctor who is from a different culture where I think opinions are not suggested but are demanded from elders or superiors. I feel she makes demands of me and not suggestions. I don't think she understands how she comes across to her patients. I also don't think she understands that here patients have brains and occasionally use them.

I think if she took a few lessons in cultural competency to realize that I will question her decisions because I do research and think for myself she might be better off. I am ready to vote with my feet and find a different doctor. I want a doctor to accept me for who I am and let me think and question. Maybe she grew up where doctors were gods and now she subconsciously thinks she should be thought of as one?

Cultural competency should be a required accomplishment in medical school (and probably in other areas as well but that's another story). Maybe we would all be a little bit more accepting of each other with more cultural competency.

In the coulda, shoulda, woulda category

Here's a new one on me. People who do better in school, are healthier. So if I had been a better student, would I be healthier?

In high school, I was not the academic. Can I just leave it at that? I didn't correlate the 'go to class' part with the 'get good grades' part. Well, not all the time. But I did relatively well on my SATs. It was actually a highly ranked public high school. I studied overseas twice in the summers. I did graduate, barely. The barely part was my failure to like wearing one of those nasty gym suits and attending gym class.

Then I took a year off - one of the smartest things I did and worked in a restaurant - where I really decided I wanted to do more with my life. I did go to a small college in the midwest which less than half the size of my high school. I actually studied there. But grades were tough. You could talk to seniors who had never gotten an A, even though they had studied. A's were rare. Failing a class wasn't that unheard of. I dropped a class once because I couldn't hack it - the professor was rumored to fail 1/3 and I wasn't doing well so I dropped it instead of failing.

This is the long way of saying I ended up being a B student with crappy health. So if I was an A student, would I be healthy?

Here's a solution: Education

So I wondered the other day, as you may recall, what can be done about clinical trials to improve them and possibly shorten the whole drug approval process. Well how about education? Apparently there are fewer errors and fewer patient questions simply by applying a little education to the process. There ya go, a simple solution that may be a start to solving a bigger problem.

In the meantime, here's some more education. We are supposed to take more Vitamin D - apparently people often lack it - but not supposed to take as much calcium - because it might cause hardening of the arteries. But, but, but, my doctor told me to take both of these... Should I change my doses around or just be confused for a bit. Well, I'll stick with being confused and save myself doctor phone calls and visits because I get enough of them anyway.

In the weird news this morning, they have recalled millions of frozen MICE because they are responsible for the salmonella epidemic in pet stores. Yuck! I had to read the title of this article to my husband twice. Yes, frozen mice. Who knew there was a business of frozen mice? But then what do snakes in pet stores eat? Canned snake food?

Finally, social media is finally catching on in the medical world. Many hospitals have electronic newsletters. All have websites. Some are on Facebook and Twitter. But now the Mayo Clinic has a social media center. I find this very cool. I wish my hospital had a social media center.

Do you feel more educated? Yes? Good!

Today I have a thousand things to do. Well not literally a thousand but close enough. I am going on vacation tomorrow. (And to all your burglars out there my big healthy husband, assisted by our large cat, is staying home.) I am going on vacation tomorrow with a good friend for a week. We are going to northern WI on Lake Superior and our plans for the week include a daily walk followed by daily lounging. But I still have to do laundry, get my seats on Southwest, and pack. And do laundry. And go to the bank. And meet a friend for a walk. And do work from home as well as go to the office. And we are going out to dinner tonight. I'm sure there is more but I can't remember.... Oh, a spend an hour figuring out how many pills I need to supplement my dilapidated body for a week.