A very 'helpful' study designed to confuse us all

I am sure that this morning's headlines (aside from Thanksgiving food, foot ball, parades, and giving thanks) will be full of the news that a new study has been released which says that 'Mammograms lead to unneeded treatment'. Gee thanks.

The study looked at test results from 1976 to 2008. The article makes two 'helpful' points:

• mammograms do not help find late stage breast cancers any sooner so the death rate from them has not gone down by much
• Between 70,000 and 80,000 women are treated annual for breast cancers that would never kill them

It also calls mammograms imperfect as they tend to over detect and find things that lead to anxiety and false positives. The current mentality is that if a cancer is found it is presumed to be deadly unless treated. So if cancer is found, we do not have a way of telling it from a deadly to a non-deadly so we treat all as if they were nasty. (Go find some patients with a tumor and ask them if we can wait to see if it kills you or goes away on its own? Not happening.)

In my mind, that is the real target. Finding ways to determine if a cancer is deadly or a cancerous tumor that is slow growing or will be reabsorbed by the body. That would be a whole new focus of research.

The Doctor Shortage

As baby boomers (of which I am one even though I am only 37) age, they need more care. Doctors are also aging out and retiring or working part time. Some doctors are leaving practice for research or other positions where they do not have to worry about malpractice lawsuits. Medical schools are not producing enough residents to fill the void. The prediction is a shortage of 90,000 doctors in the next 8 years.

If you compound this with healthcare reform where more people will be insured and seeking medical care, who is going to care for them? Granted there are provisions for medical training as part of health care reform to produce more doctors. And you do not need a physician to be your primary care, it could also be a nurse practitioner or other trained person. But sometimes you need a doctor.

It doesn't seem like a big deal until you are trying to see your physician and you are told they are booking out 3-6 months. Then the reality sets in.

I have many doctors (in case you hadn't noticed). They are actually very good about getting me in. The way it usually works, is when I see them, we decide when I will next see them and schedule the visit for three month follow ups (if I'm lucky). My rheumatologist is impossible to get into see in less than two months. But she will call and help me by phone if needed.

Where I am treated they are pretty good about getting patients in to see their primary care in a few days or any doctor on the same day. This is to avoid trips to the ER. They also have a walk in clinic (if you don't mind waiting in line) on a first come first served basis. Some specialists can take a little longer but you can call and ask for cancellations regularly.

However as a patient, we need to be aware of this looming problem of lack of doctors. What are you going to do if you wake up one day and can't move, or have shooting pains, or a stroke or something? If you work on it now and say 'what can I do in case I have this problem?' there may be ways to avoid it.

Granted we do  not know if we are  going to need a cardiac specialist or neurosurgeon or whatever in six months. But we can look at how we structure our care now. Is your care disjointed - with one doctor here, another there, and another elsewhere? If you need a specialist where is your doctor most likely to refer you? To a doctor in the same building or to a hospital 30 miles away? How easy is it to get to see a doctor there?

Again as part of being a patient, we need to  manage our care and manage up to  make sure there are treatment options available as we age and our care gets more and more complicated.

Evil, sneaky balance billing

And its legal in most states, unfortunately. Balance billing is when you use an out of network medical care provider and your insurance company covers $2000 of the $5000 bill. Then the caregiver turns around and bills you for the other $3000. How sneaky is that? But it gets worse. After a scheduled surgery you could find out the anesthesiologist, radiologist, and assistant surgeon are not part of your network could bill you for thousands of dollars.

The really super sneaky part is:

The medical care provider could be very quick to start billing you, send you to collections, and report on your credit rating.

And then sometimes your insurance company will pay all or a portion of the balance billing leaving you to undo all of the damage.

A portion of balance billing is illegal in Illinois and the is legislation in the works in New York. But if you get billed for teh balance, don't sit there, start dialing and researching to protect your bank balance and your credit rating.

Hospice shouldn't be a 'bad' word

What do we think when we hear the word 'hospice'? Face it, you probably think 'they are a goner' and wait for a funeral notice. How supportive and positive is that?

I have long suspected that hospices are not as bad as we think. Yes they offer palliative care when patients get to the point where they are no more treatment options. But they offer an alternative to nasty treatments. If you were the patient, how do you want to spend your last days/weeks/months?

Choice A is undergoing aggressive treatment which cause all sorts of nasty side effects resulting in discomfort and unpleasantness and you are either a patient at the hospital or taking frequent/daily trips for addition medical adventures? Choice B is receiving palliative care where your comfort is of utmost importance that is offered either in the privacy of our own home or at a facility which is quiet and full of caring people focusing on pain and your and your family's emotions?

Me I want choice B? I am a wienie. I do not want to die full of tubes and pain. I want to to go quietly (after trying as many options as are available). I do not want pain. I do not want to die alone in a hospital. Let me go write this down before I forget so that when the time comes my wishes are honored. (Damn, I'm turning in to my grandmother who had an 'in case of death' envelope - 2 by the time she died at 96 - full of little pieces of paper with instructions.)

A friend of mine who died from breast cancer a few years ago was receiving hospice care at home. I visited her about a week before she died and brought her take out Pad Thai. She was happy, cheerful, and on oxygen. Her mother and step father were visiting for a few weeks. But while there was no hope for treatment, she spent her last days pain free, living with her family and visiting with friends. That's the way it should be.

Hospices are trying to rebrand themselves in terms of the care they offer. People think of hospices probably just as you do - the goner thing. But hospices offer palliative care for months where people actually live longer and more comfortably than those undergoing aggressive last minute treatment.

One of the problems is doctors are referring people to hospices later and later. There are several theories on this including costs - hospice care costs less than hospital care but that means the hospitals lose the income from the patients. Also, doctors may be hesitant to admit they can no longer help a patient and by referring them to hospice, they are admitting defeat

Me I'll be signing up for hospice care when I need it. But I hope that is many years from now.

Health care reform

Now that the stupid election is over and we can  now focus on more important things than candidate hair styles, scandals, and mud slinging, we can take another look at health care reform. If Mr. Romney had been elected health care reform would probably have been on the chopping block. In the meantime, now that it is still alive, the poor insurance companies and hospitals have to make changes - note the sarcasm and lack of sympathy.

In the next five years more and more changes will be rolled out. Of the 91 changes, 60 are already in effect. You can see the full implementation timeline on at the Kaiser Foundation here. The last one takes effect January 1, 2018.

Some of the good changes are already in place - up to age 26 on parents health plan and temporary insurance for those with pre-existing conditions. There are still some new ones yet to start such as:

• Financial Disclosure: Requires disclosure of financial relationships between health entities, including physicians, hospitals, pharmacists, other providers, and manufacturers and distributors of covered drugs, devices, biologicals, and medical supplies. The first report is due to Congress April 1, 2013.   Ooh, all these hidden payments will now become visible.
• No Annual Limits on Insurance coverage
• Guaranteed availability of insurance: Requires guarantee issue and renewability of health insurance regardless of health status and allows rating variation based only on age (limited to a 3 to 1 ratio), geographic area, family composition, and tobacco use (limited to 1.5. to 1 ratio) in the individual and the small group market and the Exchanges.

I admit there are some parts of the bill that I don't like as much but overall I think this is forcing change on health insurance, medical device, and pharmaceutical companies as well as on medical centers, doctors, and hospitals.  The system was broken and I hope to see some positive outcomes for patients. After all, we are the ones that receive all this care so we should be better off.

I am being daring

Today I will be daring. On several fronts.

Back when I was in chemo a friend of mine told me to stop whining and get a hobby. I took up crocheting and then knitting.  Well back when I was in 4H and girl scouts I learned to crochet, knit, embroider, needlepoint and a few more girly-suitable-to-the-1960's (am I really that old?) skills. I hadn't thought of them in decades. When my sister in law was pregnant with my first nephew, I got inspired to crochet a baby blanket and took a stab at crocheting with her help and bought yarn and materials. Suffice to say he is 14 and the baby blanket now resides in a closet somewhere about 2" wide.

During chemo, I thought it might be time to finish the damn baby blanket. At that point my nephew was 9 and I knew he would no longer appreciate a baby blanket but he did have younger siblings. I promptly gave up on that blanket and started crocheting like mad. I started making scarves for family members. My addiction grew to encompass knitting - it was creative and non-fattening. The following year all my friends got scarves as well.

Since then, I have been making a stock pick to end all stock piles. I have a yarn stash that puts me clearly in as a member of SABLE (Stash Acquired Beyond Life Expectancy) even without cancer twice life expectancy. I have developed an addiction to yarn. I have a giant bag of yarn - you know those giant bags for storing comforters... Its almost full.

Now I have to go on the offense and get rid of my scarves so I can buy more yarn to fuel my addiction. I contemplated selling them in a local store on consignment but that didn't work out. I also thought about selling online at Etsy and that would have been a lot of work. Those would have been the easy way out. I wouldn't need to face down customers critiquing my products. I mean what if they don't like them? And say it to my face? "Gee her work is really not very good". Could I handle that? I'm not sure. I could also play the cancer card - I took up knitting and crocheting during chemo after my second cancer diagnosis so don't buy them for the quality but buy them out of pity.

So I was brave and daring on two counts and signed up for a local craft fair at a nearby school. My two counts of daring are: can I face my customers - I mean they could tell me my stuff sucks or is overpriced and not buy it. Ever. And can my body withstand a five hour craft fair? I will be  manning a booth by myself for the duration. I am equipped with a chair, a water bottle, a little bag of oranges (after a good healthy breakfast), some pain pills, and my cell phone to call my husband if I need to be bailed out.

I prefer to keep to the background but this will certainly put me out in public. So I will suck it up, put on my big girl panties, and face the music.

PS Please come to the Peirce School today by 2pm....

Antibiotic resistance

When was the last time you were prescribed antibiotics? And took them? The entire course of them? And what ailment did you have? I think the last time I was prescribed antibiotics was a few years ago after some surgery. I very rarely take them.

I hear more and more complaints from friends and family that they were sick for a couple of weeks, went to their doctor finally, and were told they would have to wait it out with over the counter medications, fluids and rest. They were not given antibiotics as they had expected and were frustrated.

This is a good thing. One of the biggest medical problems we have these days is resistance to antibiotics and the emergence of 'super germs' which cannot be treated with antibiotics. Too often prescriptions for antibiotics have been given without signs of infection and often prescriptions are not being taken for their entire course - the patient feels better but is not completely recovered and still has the germs in their body which now have the potential to become antibiotic resistant.

On Monday, I was a moron (to use the term loosely) and managed to cut the palm of my hand with pruners. Yes it bled a lot. Yes it was deep. Yes I panicked. No it wasn't very big. But as it was on my lymphedema arm, I called my doctor's office which sent me to the minor ER (who knew there is a minor ER but there is) in case it needed stitches. It needed a pressure bandage, no stitches, no steri strips. I felt somewhat like an idiot that I even went to get medical attention in the first place but was concerned about my lymphedema arm which is not supposed to have any punctures or pressures, never mind incisions from pruners, to prevent lymphedema which can become a permanent problem.

They also gave me a prescription for antibiotics and told me that at the least sign of infection to fill the prescription and take the entire course of them. I toyed with the idea of taking them to prevent infection but rejected that thought on the grounds that I really don't want to take any more medications at this point. I hadn't expected to get antibiotics at all.

I do think that patients go to the doctor and expect to get antibiotics for almost anything these days. Doctors are heeding the call of reducing prescriptions to prevent the emergence of more super drugs but patients do not always understand.

As patients we need to understand the bigger picture. Antibiotics are good but should not be taken unless they will help. And if you take them you need to take the entire dose.