What's in a name?

Who ever said that? I can't remember but it doesn't really matter. However WHO is now looking at names for some diseases that stir media hype, bias, and fear. Mad cow? The words alone make me think of the bicycle scene in "Butch Cassidy and the Sundance Kid" where Paul Newman gets to see the whites of his eyes.

Asian bird flu doesn't make me think of the Far East but of the Chinese ducks that were in a favorite story from childhood.  West Nile virus makes me think of the Egypt and wonder if it came from crocodiles.

WHO wants names of diseases to reflect what they are not where they are from or found. They want references to diseases not to include types of animals, places, people, or cultures or occupations. Some other names under attack are Alzheimers and Lou Gehrigs and Lyme disease. I am sure you can think of more.

The problem with these fancy names is the panic and bias that ensues in the public as a result. Who wants to go to Asia if you can get the Asian bird flu? Or Egypt if you can get West Nile? Or Lyme, CT if you can get Lyme disease? Swine flu means you don't want to eat pork or go visit a farm.

These name makes it easier for people to relate to and the hype and fear to ensue. If the new flu is called H1N1 or 2016 highly transmissible flu, would you stop eating chicken or pork?

"As the WHO announcement stated, scientists as well as national authorities and the media should take care early on to give a name that is more responsible and accurate."  

Time to change the guidelines

Medical guidelines are put in place so there are fewer questions about what are correct tests and treatments for patients. They can be anything from - do you need stitches for that cut or do you need an EKG? The criteria used can be anything from age, general health, behaviors, diet, and much more.

Behavior is a big one. This is drinking, smoking, eating patterns, exercise, etc. But if behaviors of the general population change, the guidelines need to be modified to adapt.

A generation ago, more Americans smoked. Guidelines were developed for low dose CT scans for current and former smokers - designated as those who had quit in the last 15 years. They were shown to greatly reduce deaths from lung cancer as it was caught early for many patients.  The guidelines were used to determine who would receive this annual screening and for whom doctors would recommend the scan and the insurance companies would pay.

Now as fewer Americans smoke and do not return to smoking, fewer are eligible for the low dose scans and have their insurance companies cover them. There is a concern that more cases of lung cancer will not be caught as early resulting in more deaths. 

Medical guidelines discovered

Yesterday, in my usual scouring of the internet for the magic cure for all my ailments, I found an article about variability in cancer treatment and compliance with guidelines. Its an interesting read and how to make sure you are getting the right treatment with second opinions, good insurance coverage (plan ahead), yada yada yada.

And then I asked myself, what guidelines? I have always assumed that some little group of doctors got together and over a few beers put together their guidelines for treatment for each ailment. Little did I know that NCIC provides guidelines for treatment of all cancers. Some of them are even available in patient format - meaning readable in by normal people who did not go to medical school. You can see the treatment guidelines for stage I and II breast cancer here.  And a list for all available patient guidelines by cancer type.

I cannot tell you how cool this is. How often have I wondered about my treatment plan, was it in compliance with guidelines - meaning did it give me the best possible treatment? It was a lot of good reading and I want to review it all.

Then if you go to the link for clinical practice guidelines, at the very bottom of the page is a link to all guidelines which takes you here for even more reading but it quickly becomes a bit technical because it is aimed at doctors. Feel free to start deciphering.

Finally, there was a link to the guidelines for other diseases - meaning not cancer - which are at the National Guideline Clearinghouse. These are uber-cool. I immediately looked up RA and will move on to fibromyalgia shortly.

So do not click the links unless you have a few hours to give yourself reassurance that your treatment plans are correct. They will suck you in quickly. I am going to work an hour late because I got a tiny bit side tracked.

New Guidelines for Life after Cancer

The Spring issue of Cure Magazine has an article on the new guidelines for life after cancer from the National Comprehensive Cancer Network. Sometimes I just want to say 'its about time'.

The article provides a nice overview and is a worthy read. But I do feel it is way late. Why does the medical profession feel so vertical? In the days of personalized medicine, isn't the patient's entire body supposed to be of concern? Each specialist only seems to deal with their little focus and not that of the entire patient.

A cancer diagnosis is not the same as a chicken pox diagnosis and leaves a life long impact. The new guidelines show a new way of thinking. If no one asks about it, how will it become known as an issue?

'To develop the new guidelines, the NCCN engaged experts in oncology from throughout the country. During the course of a year, they split into working groups—one for pain, for example, another for sleep issues—and reviewed the scientific literature on how to assess survivors’ problems and intervene in a meaningful way. Focus areas included:

• Anxiety and depression
• Cognitive dysfunction
• Exercise
• Fatigue
• Immunizations and prevention of infections
• Pain
• Sexual dysfunction
• Sleep disorders

The guidelines were then developed to give oncologists, primary care doctors, nurses, social workers and other healthcare providers an easy-to-follow structure. At the first level, providers might consider asking a few simple questions.

To check for anxiety and depression, for example, the provider might ask:

• Do you often feel nervous or do you worry?
• Do you often feel sad or depressed?
• Have you lost interest in things you used to enjoy?'

It seems almost too logical and clearly in the category of "why didn't we think of this before?"

There is a lot of reliance on the primary care physician who is supposed to care about the whole patient. At this point, I see my primary care annually and see all the specialists more frequently. While they focus on their part, its only when I get to my PCP, that my whole body and being gets discussed. And last year due to scheduling issues, I saw her nurse practitioner, who is nice, but not the same. I do like having my annual physical with my PCP.

But back to the new guidelines. I think its time for me to start making a list of my issues that relate to the focus areas to make sure I am prepared for my appointment... In July.

Hold that test!

Yes, skip some of those lovely little medical adventures, please. I have heard in the news that 9 medical boards have recommended 40 something tests/procedures (a/k/a medical adventures)  to help reduce medical costs. I have heard a few of them - skip antibiotics for the common cold for example - but wasn't sure of the rest. In the days of high medical costs, over diagnosis, and over treatment, any little adventure we can skip, save me a seat! I heard some appalling number the other day of something like $3 trillion is the amount Americans spend on medical care each year - and I might be missing a digit  maybe $35 trillion?

ASCO, or the American Society of Clinical Oncology, has made five recommendations of tests or treatments for cancer patients.

"The list emerged from a two-year effort by an American Society of Clinical Oncology (ASCO) task force, similar to a project other medical specialties are undertaking, to identify procedures that do not help patients live longer or better or that may even be harmful, yet are routinely performed.

As much as 30% of health-care spending goes to procedures, tests, and hospital stays that do not improve a patient's health, according to a 2008 analysis by the nonpartisan Congressional Budget office."

The first recommendation is: "...that patients who have been successfully treated for breast cancer and have no symptoms of cancer not undergo CT, PET, other imaging, or bone scans to check for recurrence."

ASCO recommends against routine use of four other procedures: chemotherapy for patients with advanced cancers who are unlikely to benefit; advanced imaging technologies such as CT and PET or bone scans to stage early breast and prostate cancers at low risk for metastasis; and drugs to stimulate white blood cell production in patients receiving chemotherapy if they have a risk of febrile neutropenia."

Hmmm... I had a bone scan at my breast cancer diagnosis because I was also experiencing some weird leg pain issues. I did have a PET scan after treatment at one point because there was a 'suspicion' and with my history they need to be sure (blah, blah, blah). I was also hospitalized for febrile neutropenia in the middle of chemo and then had some drugs to take (which I cant remember their name or exactly when) after each session of that chemo.


So what do I think of these changes? I know they are being done with an eye on controlling costs. However some of these greatly ease the patient's mind. If all my friends are getting PET scans why aren't I getting them too - the lemming mentality? I see it all the time on cancer boards. 'I get that test twice a year, you demand your doctor get you that test as well.'  People often don't think about costs when their insurance pays for them.  And peace of mind is invaluable to patients during and after treatment - they just want to make sure its not there.

While I see benefit in annual mammograms for women with or without a breast cancer diagnosis, I do not really see the benefit of regular CT, PET or bone scans for asymptomatic cancer patients. Fewer trips to the hospital make me a happy girl.

Finally while these are guidelines meaning they are general rules, each cancer patient needs to talk to their doctor about what is appropriate for their needs. A good doctor will be able to give solid reasons why or why not a medical adventure is needed. So once again, go talk to your doctor and see what is right for you.

If we can kill them, lets confuse them part 993

Once again we are faced with the vast conspiracy to kill off all the cancer patients through confusion. First they said mammograms for everyone over 40. Then they said no, not until 50. Then the UK said only every 2-3 year after 50. Then Canada said after 50. Now the radiologists say mammograms should be done annually for women over 40.

Call me confused.

But what this is really telling us is 1, there is a vast conspiracy out there to confuse us all and 2, the only way to decide what is best for you is to talk to your own doctors and see what the two of you decide is really right for you.