Should your doctor tell you the truth or what you want to hear?

So you go to see your doctor because you have been sick for a week and you want some antibiotics so you can finally get better. Or you have a cough and are concerned its more than just a cough and think the doctor should give you a chest x-ray to make sure its nothing more. You get the point - you go to the doctor with an expectation of care you should receive.

But the doctor doesn't agree and says what you want is unneeded. Your cold is a cold and will get better, antibiotics will do nothing. Your cough is a cough and you don't need an x-ray. Should the doctor agree with you and give you the antibiotics or x-ray or should they just tell you the truth? I want the truth.

I don't want a doctor to sugarcoat anything (especially when they say 'you may feel a pinch' - I want them to say 'it will hurt a lot and grit your teeth'), I want them to tell me the truth. I don't like doctors who try to paint a fluffy pastel colored picture of my health. Give me the details and the numbers and I'll suck it up and cope with it.

Maybe other people are different, they don't want the truth in a big pile of information, they want little bits over time or just don't want the details, they just want a cure for whatever they had.

I like my breast surgeon, he is good for telling it like he sees it. He has said things to me in a very open style that tells me the truth. Some people don't like him because he tells things very plainly but I appreciate it.

I have also learned that just because I make assumptions about what I want for care, the doctors are the ones that have the training to make the decision on what is really needed. I let them make the decisions and tell me why I need what they suggest. But then I do make sure I agree with them. Its my body after all.

Knee pain and cures

I wasn't going to blog about medical studies because I have written so much about them recently but then I read the news this morning and this is what I found:

• "Exercise may boost stroke risk"


• "Why happiness may not always be good"


• "Low Salt Diet boosts heart attack risk"
  

So now I want to eat a piece of bacon and sit on my butt and pout. (I am not picking on CNN but they did coincidentally happen to list all three of these today.)

Do you see how confusing medical research can be? I am done reading them but amazed what I can find even when I don't try.

But otherwise, I am fine. I am ignoring all these (confusing) studies. Today I am amazingly over scheduled. I don't know how I do this to myself (but it means I wont have time to sit around and pout).

Well, maybe I am not so fine. I have back pain, knee pain, ankle pain, and my annual mammogram and physical next week as well as a bone density scan and a visit with my pain doctor. This week my knee doctor recommended a series of injections into my knee to relieve the pain - which work 60-70% of the time (and I am going to assume they are completely painless). Otherwise, the only thing that will relieve the pain is knee replacement and I would rather discuss that in another 20 years.

I just looked up the knee injections. They are called Synvisc injections. My personal rule is you can't have an ailment or treatment unless you can spell it and pronounce it. Then I made the mistake of reading the procedure they follow to do the injections. That was a big mistake. A new personal rule - never read procedures before they happen.

But all these doctor appointments mean homework. I need to make a list of questions for my new primary care doctor as I enter the contest to be the least healthy patient of the year. And how many more doctor appointments will I get as a result? I seriously believe I am a professional patient. This is year number five of doctor visits numbering over 50 annually. But that's next week. Today I will just get through my busy day.

A typical example of how not to present a medical study

Here is an example of how not to present a medical study. What is wrong? Because it has a scary title "Study: Weight Gain May Boost Survivors' Risk of Breast Cancer Recurrence, Death" and ends with:

"The findings don't necessarily mean that everyone with middle-age creep is at higher risk of dying from cancer — the authors say that more work needs to be done to clarify whether there are thresholds of weight gain that trigger increases in risk, and more studies need to explain how weight and cancer are related."

I am not targeting this medical study - I am sure it was done with the best of intentions and had some significant results somewhere, I am merely using it as an example of how not to present study results.

This happens all the time - they come up with a scary title that basically says "You are doomed and are going to die". Examples are:

• "A new study has proven that use of plastic increases carcinogens in your blood."


• "A new study has proven that eating red meat is bad for you but they aren't sure how to get enough protein without red meat if you are allergic to legumes and soy".


• "A new study says breathing normal air causes lung cancer".


• "A new study says eating will make you fat".


• "A new study finds exercise can be dangerous".

Then they ramble on about the study 'we aren't really sure why this happens' and end with 'more studies are needed to decipher what we just figured out and see if it is significant in anyway'.

So my thought is that I will ignore this study because I have gained more than 5% of my diagnosis weight (which is a number you will never know) and stick with the fact that they don't know what this correlation means at all.

PS Please stop with that stupid survivor label. We aren't survivors. We are people living with a cancer diagnosis. I didn't survive anything more than a bunch of doctor appointments.

I am not just another medical chart

So yet another study came along but this is one I like and will incorporate into my doctor interactions.

This new study says that patients who bond with their doctors are more likely to get better and doctors who show hope and optimism have patients who are more likely to get better. While the study focuses on mental health issues the article goes on to add that it is applicable across all medical ailments and diseases.

What does this mean to me? That I will be more active in who my doctors are and treat the first interactions more of interviews - where I am interviewing them - than as blind acceptance of in who ever's office I ended up. A doctor is someone who you (or your insurance) pay for a service. There is no reason to stick with one you don't like or who doesn't listen to you. If you don't like them, find another one.

In the past few years I have mostly gone to new doctors who I have researched and asked questions about. I want ones who will listen to me and not disregard my concerns. I am not just another medical chart to be reviewed and treated - just as I am not just another number at the deli.

The past few weeks I am thinking about the idiotic Dr. B who ignored me about my concerns and my habits and blamed me for blood pressure issues. It turns out since that he was wrong and he did upset me significantly to the point that if I am referred to any other doctors in the near future I will probably be on the defensive side. I am almost at the point of writing to the hospital to complain about him or at least complaining to a patient advocate.

What do I want in a doctor-patient interaction? They don't need to be my friend. I don't need to be able to call them 24/7. I do need to be able to get an appointment if needed within 24-48 hours. I do need to get some follow up when/if diagnosed with something new. I do need to be listened to and not discounted when talking about what bothers me - why I am there. Am I too demanding? I don't think so. I am happy to vote with my feet.

Do doctors understand this? I think sometimes they do and sometimes they don't. This depends on both their bedside manner and their personality as well as size of their ego. Most I think do try to reach out to their patients.

Sometimes patients too need to realize that doctors are not miracle workers. Its a two way street. If you make demands of your doctor they are going to react badly. If you expect your doctor to change your treatment protocol every week just because a new study came along, your expectations may be wrong. A treatment needs to be tested and proven to be put into use. A patient needs to listen to their doctor and follow their instructions. If your doctor tells you to take a prescription, exercise, eat right, etc, yes it is advice but if you don't follow it, you won't get better.

I don't want to be just another medical chart. I want to be a patient who actually works with their doctor to get better

Insurance is only part of it

Having health insurance is only part of the solution. Here in Massachusetts we have state health insurance so basically everyone has access to health insurance. This is a good thing and one of the things that went along with this was the premise that people would go to their regular doctors instead of emergency rooms. Well that part didn't work. ER rates are higher than in the past.

The problem was insurance was made accessible but we didn't create an infrastructure so that people could get into see their doctors. We need to make doctors more accessible. There are too many patients for each doctor (I don't have the numbers so you can just take my word for it) and often people resort to ERs for medical care because they can't get into see their doctor in a reasonable amount of time. If you call your doctor for a problem and they can't see you for a month, that is a problem.

I have a plan A, plan B, and plan C for medical care. My plan A is I call my doctor's office and see when I can get an appointment. My doctor doesn't have evening hours but some of the ones in her office do and usually I can get into to see a doctor on the same day. My plan B is to go to the hospital's walk in clinic which is open most evenings and on Saturday mornings.

If I am dripping (a lot of) blood, I will resort to plan C which is to go to the ER. I have to be dying or losing a lot of blood before I will go to an ER. I have spent too much time sitting around ERs waiting - even when I have gone there on a doctor's orders and then had to wait six hours to get into see a doctor and then another six hours to be admitted. At that point I should have just waited and called my doctor in the morning and gone to see them then.

Anyhow you get my point, now that insurance is getting more accessible, the next step is medical centers and doctors need to make access to doctors easier. I don't think we should blame the doctors but we need to ask the medical centers to look at how they schedule them and at the doctor's load of patients.

More on helping if you know someone with cancer

As a follow up to yesterday's post on helping people with cancer. What can you do to help? How can you help? While a cancer or other diagnosis doesn't mean life is over, it can make things difficult.

I assume everyone has the best intentions and wants to bring over a meal or something to help but with cancer, a casserole may not be appreciated. If the person cooks for their large family, casseroles may be appreciated but if a smaller family or someone else cooks, I would definitely ask. And as a reality check, how many casseroles can one use at a given time? While in chemo, food can lose its appeal. I don't like shrimp any more. While in chemo, scallions made me nauseous.

I think the best thing to do is ask them, their spouse or other family member how you can help. Maybe they don't need food but need someone to help get the kids to school or be there for them after school so both husband and wife can go to treatments together. Or even help getting the kids to or from sports or other events. Or maybe they need rides to or from treatment. Or maybe just picking up prescriptions to getting groceries for them. Or maybe help with laundry or house cleaning or more. Sometimes, they just need people to stop by and chat since they aren't up to going out and socializing.

When I was in treatment, I had a total of 16 chemo rounds over five months. The first four were pretty awful and my husband made it to all of them. But there got to be a limit to how much time he could take off from work. My last 12 treatment were weekly doses of Taxol and I started to feel better so sometimes when he couldn't stay, he would drop me off and my parents would pick me up. That worked for me but other people may not have the luxury of local family members to help.

I ran across another cancer blogger recently and on her blog she has posted a page on her blog about how to help her which basically sums it all up. The little things in life like going to the grocery store or doing laundry can get very complicated.

When you have cancer or other nasty ailments, life goes on and you have to cope with your life as well as your diagnosis. Help is always appreciated.

Cancer news

Why is it when a celebrity gets cancer it becomes international news? But when a regular person gets cancer, people run away and hide? I mean the latest celebrity to get cancer is the man who was just recruited by the NFL, shouldn't he be allowed to cope with his diagnosis and treatment with a little privacy? The last thing a chemo patient wants is a camera following them around as they lose their hair and try to keep down their food.

The lack of sensitivity in the media is awful these days. Reporters are aggressive for stories and have to get the scoop. Stories get blown out of proportion and what is little news becomes big news. Media hype causes a lot of problems but that's not my topic.

My topic is cancer diagnosis and privacy. Well not just privacy but managing of privacy. A regular person gets cancer and has to cope. They tell who they want to at first and then all your friends and relatives know and people call and want to talk and you still are in 'cope' mode not in 'talk' mode. (That is all the friends and relatives who don't move to another planet so they can pretend the world is perfect and no one has a nasty disease.)

If some one is diagnosed with cancer, I wouldn't bring it up to them until they tell you. If you hear a friend has cancer through another friend, I would not rush to call them and talk to them about it unless the sick friend has told the other friend to please tell people. Its a time to give people space to cope and think things through.