Tuesday, July 22, 2014

Medical errors - and what if they didn't tell us?

Dr. Ernest Amory Codman.
Massachusetts General Hospital archives
Dr. Ernest Amory Codman.

We all are aware that, unfortunately, medical errors can and do occur. A recent example is of this New Zealand woman who was never told of her Her2 positive diagnosis for two years and didn't receive the correct treatment until it was too late.

But what if doctors never told us about treatment outcomes and what their error rates were? That would be pretty damn scary. No one likes to admit they made a mistake but as 'to err is human', it does happen.

But that's the way things used to be:

"Dr. Ernest Amory Codman was in his mid-40s when his golden career as a sought-after Harvard surgeon began to unravel. He had quit in exasperation from Massachusetts General Hospital, and when he took his dispute with hospital leaders public, colleagues turned against him. Many stopped sending him patients.

It was the early 1900s, and Codman was impatiently pushing hospitals and doctors to adopt a practice many considered heretical at the time: Record the “end results’’ for every patient — including harm caused by physicians’ errors — and make them public."

But now his work is being recognized:

"A century later, many of Codman’s ideas are the bedrock of modern medicine. And a group of doctors, including a former Mass. General surgery chief, plans to make sure he gets the wider appreciation he deserves this week." 

His work has led to many changes in medical practice, even if he wasn't appreciated during his life time. You can read here the whole story here but think of what medical practice would be like with out people like him pushing for change.

Monday, July 21, 2014

Specialty Drug Prices are Killing the Patients

I know I have blogged about this before but it just irks me of the inequalities that I see in this system. I do not have a grudge against big pharma. I really do not. I just wish there was more change in the system where drug companies seem to be tightening the noose on patients who are trying to survive.

Is your life worth $100,000 annually? Can you afford $1000 monthly in drug copays? If you ask the big pharma companies, it is. The majority of the new drugs approved last year by the FDA are specialty drugs, 19 of 28 (which is an appallingly low number of approvals to me but that's another story for another day). These come with the hefty, specialty price tags.

"Fewer than 4 percent of patients use specialty drugs, but they account for 25 percent of total drug spending in the United States; and the growth of specialty drugs is a key factor driving up health care spending, according to PricewaterhouseCoopers."

Many insurance plans provide affordable co-pays for the drugs. But more and more, as a cost saving effort, are switching to tiered plans. I have one where generics are very cheap but brand names drugs can be very expensive. They can be 35% of the retail... I can avoid much of that by mail order but still when one month of one drug has a co-pay of $105, it begins to add up. More and more insurers are moving to this type of coverage as they cannot afford to keep up with the new drug prices. I do not blame them with the costs of these drugs.

We have an industry which is full of employee perks and generous salaries and we have insurance companies who are trying to balance their budgets and patients who are being killed by their drug payments. Where does that problem lie?

This system needs to change. Its not all the pharma companies fault, there is some blame to be borne by the insurance companies as well. Moving costs to the patients is not the best option either.

Sunday, July 20, 2014

Sleeping, or not

I have problems sleeping these days. On a good night, I get to sleep for a solid 12 hours. I'm not kidding. I hope to do this once a week at least. Not this weekend. If I can, I save my big sleeping nights for the weekend because I don't have to get up in the morning.

Friday night I slept from about 10-330. Then I dozed off and on until 6 when I gave up and got up. Last night, I slept from about 930 to 4. Then I couldn't sleep so I played games on my phone (because my phone was nagging me to get caught up on words with friends) for about half and hour and then dozed for a while and finally got back to sleep for a bit. I am feeling a bit sleep deprived as a result.

I have spoken with my many doctors about this and my PCP said she wants me to have a sleep test to figure out if I have apnea or other issues.

Sleep tests can determine other problems as well. According to Dr. Wikipedia:

"Polysomnography is used to diagnose, or rule out, many types of sleep disorders including narcolepsy, idiopathic hypersomnia, periodic limb movement disorder (PLMD), REM behavior disorder, parasomnias, and sleep apnea. Although it is not directly useful in diagnosing circadian rhythm sleep disorders, it may be used to rule out other sleep disorders."

My PCP said that now they do sleep tests where they send you the machine at home and you can sleep in your own bed. However the hospital set me up for an overnight sleep test there. They claim the room is like a motel room. I hate sleeping in motel or hotel rooms by myself. I want my husband there to protect me from intruders and scary monsters or zombies. I also want the cat. I'm not sure I can bring either.

I got the schedule in the mail late Friday afternoon when it was too late to call. Then I got the information brochure in yesterday's mail telling me all kinds of useful information. Dress in comfortable clothes - not pajamas. It doesn't sound like you can wear pjs. They do not have shower facilities either.

I like this part where it says if you drink every night you should do so before coming - but you can't bring any alcohol and you must have a driver bring you if you are drinking. LOL. I find it funny that they specify this. Obviously some have driven drunk to the sleep test or brought in a bottle or two.

But I don't think I can get sleep there which is the whole point of the test. And what if I want to gt up and pee in the middle of the night?

First thing Monday I will call my insurance company and make sure they cover the test at home instead of there. Then I will call the hospital and see about having a home test if I can and ask all my other questions - can I bring my tablet to read a book on before sleeping? What about PJs? What about bathroom visits? Lots of things to know.

All I know is I need to sleep more. And this might help.

Lack of sleep causes both crabbiness and crankiness.

Saturday, July 19, 2014

Why do I bother to ask these questions anyway?

This week I saw my oncologist for my annual check up. I am happy to only see her once a year... Except when I nominated her for an award last winter or when I ran into her in the hallway at the hospital. So, I, who am never afraid of the direct question, asked her "so what are my chances of more cancer?". Why not ask? I would prefer to know what can be known. This little question of what could be coming in the future has been irking me for years.

The answers I got were:
  • Even with my medical history of two cancer diagnosis and family diagnosis of a parent with cancer, there is no way of knowing if I am likely to get another cancer. If there was some genetic predisposition that would be different but there is no way of knowing. People who get cancer once, are more  likely to get another cancer. People who get cancer twice, are more likely to get a third cancer. Et cetera. Not very helpful.
  • The chances of having a thyroid cancer recurrence are still out there but not known. It has been known to recur decades later.
  • The chances of having a breast cancer recurrence since I am still on Femara (Letrozole) are somewhere around 6%. She ran my data through a computer model and got the magic number.
We talked about it a little... And then I left. And then I realized, so what does 6% mean?

Does it mean I have a 6% chance of recurrence? Or that my chance is 6% greater than the rest of the population of getting another breast cancer? I just have to accept there is a 94% chance I will not have a recurrence.

Why do I even bother to ask these questions? Did it get me anywhere? No. I guess I am asking questions that have no answer. Damn.

Friday, July 18, 2014

VA Hospitals

The message here is do not go to a VA hospital. Especially for cancer care.
I find this appalling. We send men and women off to war and they are supposed to receive their medical care at VA hospitals around the country. What do they get? Poor and delayed care. And this results in deaths. The waits are twice what they are at other hospitals.

The saddest part of the video above is that there are probably so many more stories like this.

What is going on at the VA hospitals? Bureaucracy? Paperwork? Employees who don't care? No sense of urgency? I don't know but you won't catch me near one. Yesterday I blogged about the best hospitals, now these are some of the worst as far as I am concerned.

Thursday, July 17, 2014

The Best Hospitals

US News and World Report just released its annual list of the best hospitals in the US. The hospital I go to is not in the top ten.

And I am not concerned. I mean what is the benefit of going to one of the top 10 hospitals inthe US? My bet is it comes down to two issues:
  • More expensive bills
  • Longer waits for appointments.

I have been told by someone who worked at one of the big name Boston hospitals that unless you are related to a senator, you can expect a long wait to get in to see a doctor. And a recent study of Boston hospitals showed that the big name hospitals offered the highest fees.

With all my medical crap, I am very comfortable with the medical care I receive at Lahey Medical Center which is ten minutes from home.And that recent study of fees in metro Boston put it near the bottom of that list.

My only complaint with the hospital is that I am there too damn often.

Wednesday, July 16, 2014

The mammogram benefit discussion

There have been a few (thousand) discussions on the benefits of regular mammograms in the past few years. There are all sorts of claims on the problems of false positives, over diagnosis, false negatives, and all that.

So stop the presses and read the results of this latest survey. Its a bit of a statistics lesson so allow me to break it down with my stellar liberal arts education and marketing background

This survey looked at the incidence of breast cancer and the increased diagnosis trend from 1941 on. The first half of the time studied was from 1941 to the 1970s before mammograms - the base data.* Then it looked at the rates of diagnosis from the 1970s to the present.

What they could tell from the base data is the trend in increase in breast cancer from increased environmental or whatever factors and got their base rate of increase of 1.3% annually - or the expected rate of increase in breast cancer diagnosis. They also got their percentages of expected diagnoses of early and late stage diagnosis.

Then they looked at the date from the 1970s to present. What they then determined is that since the introduction of mammograms, the proportion of diagnoses of early stage cancer are up significantly and there is a 30% decrease in the expected rates of late stage diagnosis.

That is the benefit of mammography. The 30% decrease in late stage diagnosis. If you wish to debate the benefits or lack of benefits of mammography, please figure out a way to dispute that point.

*My 1981 cancer resource book from my first thyroid cancer diagnosis does talk about how mammography was being considered for annual screening for all women.

Tuesday, July 15, 2014

Living a better life

I have decided I need to take steps to improve my life (well our lives because this includes my husband). This has taken some thought to get here but I have come up with these:
  1. We need to eat better. I talk about it. I try to but not there yet. I can tell this because of my bulging waistline. My husband has a similar problem. More vegetables and grains. Less fats, etc. You know all of that but there is always room for improvement.
  2. We need to do more things together. Last weekend we on a day trip adventure to an ocean front state park in New Hampshire, just over an hour away. We walked on shady trails, sat on the rocks and watched the ocean roll in and admired the view of the offshore islands and closer lighthouses. Then we went for a late lunch, a little shopping and home. I have already planned our next trip in a few weeks. We need time at home this weekend to get some things done. Besides it would be less fun if we went on a day trip every weekend.
  3. I need to take better care of my appearance. I get regular hair cuts and get my nails done. But I dress like a slob I have decided. A casual top and dockers does not a fancy outfit make. I used to work in Boston in an office where wearing a suit was considered suitable. I stopped working in the city 7 1/2 years ago by choice and have gotten very casual. I actually went clothes shopping and bought some tops that push my boundaries of being a little dressier and even bought a dress(!). Today is the first day of new attire at work. We'll see how it goes. My husband does dress nicely every day in a button down shirt and sometimes even a tie so he is not a problem here.
That's it for now but I think its plenty.One step at a time. I have found being sick allows me to get more casual. Who spends time on their appearance when you feel like crap? Also, business offices where I have worked have gotten more and more casual over the years. Where I work now, jeans do appear on co-workers.

This is part of living a better life. I need to do other things but I'll get to them. Getting together more often with friends. Going out more socially than I have been doing. Step by step we can live a better life.

Monday, July 14, 2014

Good or bad, I'm not sure

I'm not sure if this is a good thing or a bad thing. There is a new program available called Smart Scheduling for doctor's offices. What it does is:

"Smart Scheduling mines patient scheduling histories to determine who is more likely to cancel or miss an appointment. It then sends alerts to the scheduling programs that doctor offices use to book appointments."

So it digs into your history and looks at your background to see if you are likely to show up for an appointment or not.

"If a patient is in a high-risk category, for instance, it prompts office schedulers to call with a reminder. If the patient cannot be reached, there is a good chance he will not show up at all. So, the doctors could then book another patient for that time slot, keeping the patient flow consistent throughout the day."

Younger patients, new patients, and those without phones are least likely to show up. Established patients, older patients, married patients, and for some reason 10am appointments are most likely to show up.

I'm not sure what happens if an expected no show, shows up. But I'm not sure if I like this kind of intrusion into my file. I mean it makes me want to be a no show a few times just to break the mold.

My thought is people should stick to appointments - it doesn't matter if its a doctor appointment, a business meeting, or meeting a friend for coffee - just show up. Or And call if you are running late. Its called politeness in case you have forgotten.

But I really don't want a computer looking into my background to decide if I am going to be a no-show.

Sunday, July 13, 2014

I'm running out of doctor's appointments

I got my latest appointment list from the hospital. I was shocked to realize that I only have eight scheduled appointments. Total. That's amazing. I haven't had less than ten scheduled appointments (which is the most shown on the appointment list) in years.

On one level this makes me very happy. I am sick of being sick and going to the doctor. I spend way too much time there. I have been making a concerted effort to cut back on unnecessary doctor appointments. I have opted out of some doctors simply because I don't think they do me much good. I cancelled my appointment with my radiation oncologist because I have no idea why I am still seeing her.

On the other hand, with the constant doctor appointments comes a sense of a safety net - nothing that bad can be found at a doctor appointment if someone else has seen you just a couple of months before. This can be seen with cancer patients facing the end of active treatment when their oncologist says 'all done, see you in six months' and all the continual follow up ends. This is when the most cancer patients fall apart - their safety net has ended.

When I hit the end of active treatment, I got a therapist who I still see monthly and my health continued its downward spiral so I saw doctors constantly. Finally seven years after my diagnosis, six years after active treatment, my health is stabilizing (or so it seems today) and I stop seeing doctors as often.

Now I am down to a PCP annually, rheumatologist every three months, pain doctor every four months or so, endocrinologist annually, oncologist annually - maybe not any more after the next appointment, dermatologist annually, therapist monthly, and meds therapist twice a year I hope. That works out to 11 appointments a year plus 14 for my mental health. I can live with 25 total appointments. Plus dentist twice a year and periodontist twice a year. So 29 appointments. Plus a mammogram is 30 appointments. Which is really 12 medical, 14 mental and 4 dental. If I split it up, it sounds better. Or I need back injections. Damn I guess I don't have only a few appointments.

Unless of course something happens.

I will push that looming thought out of my brain because I need to 'grow up' (is that a good term?) and get past the 'being sick' stage of my life for now. I need a being healthy stage of my life for now so I can do the things I enjoy and not go to the damn doctor. That would make me much happier.

Saturday, July 12, 2014

'Chasing Life' or Coping with a Cancer Diagnosis

I have been watching a new show on ABC Family called 'Chasing Life'. I was drawn to it for two reasons - its based in Boston and its about someone with cancer. I always like to check out the shows based locally - to see how good or bad a job they do. This one doesn't even attempt Boston accents which is good (because they never get them right) and is entire unrealistic in that a three generation family lives in a townhouse on Beacon Hill, which probably lists for a few million.

Here is the 'official' show description:

"Chasing Life follows twenty-something April (Italia Ricci), a smart and quick-witted aspiring journalist, who is trying to work her way up the ladder at a Boston newspaper by trying to impress her hard-nosed editor. When not pursuing the latest scoop, April tries to balance her ambitious career with her family – her widowed mom Sara, rebellious little sister Brenna and her grandmother. Just as things start to look up at work, home and on the romance front with co-worker Dominic, April gets the devastating news from an estranged uncle that she has cancer."

But I digress. What I do like about it is that the star, April, is coping with a diagnosis of leukemia. While yes there is the drama of a boyfriend, a BFF who is a drama queen, a bunch of family crap which can be entertaining, the issue of coping with a cancer diagnosis resounds with me.

I have watched the first two episodes and she has only told her BFF about her diagnosis and can't seem to find the right time to tell anyone else. She can't find the words, she can't find the time, she doesn't  know what to say. Her mother, sister, grandmother, co-workers, and boyfriend do not know.

While I fear the show is playing off what I feel is the latest trend that it is 'hip' to have cancer coming out of Hollywood - there seem to be more and more movies and shows about this - I can relate to this one. I dreamed about how she is dealing vs how I dealt with sharing my cancer news. As someone who went through the issues she is facing, I feel the show is realistic in its depiction of the issues. Usually if someone hasn't walked the walk with coping with cancer, they cannot talk the talk.

I plan to continue watching the show and am optimistic it will not deteriorate into fluff or stupidity. I am a few episodes behind which are safely stored on the Tivo until I get to them.

Friday, July 11, 2014

I'm not dead yet

"Bring out your dead"... my favorite Monty Python quote is actually "I'm not dead yet".

Yesterday was my annual physical. And the verdict was "I'm not dead yet". Yes I'm still here. And there doesn't seem to be much new that is significantly wrong with me. (The key word in that statement is 'new'.)

It was nice to talk to my PCP this year. Last year she was on maternity leave so I met with her NP who I also saw this past winter for a bad cold. And who I also saw over the winter and spring when taking my father to his PCP's NP (they share the same NP).

So other than going for cholesterol blood work after fasting sometime in the next month, the hope is that I am good for another 12 months.... But who is counting these days? I don't have another doctor appointment for a week.

I do not have an exciting life these days. I am going to the gym to maintain my 'healthy' body a little longer.

PS And I am still my lofty 5'3.5" tall. I stretched my neck a tiny bit.

Thursday, July 10, 2014

You don't understand, don't worry, your doctor doesn't either

With all the new medical advice out there, they always end with two statements:
  • More research is needed
  • Ask your doctor if this is right for you.
Well in this case, more research was done and it turns out doctors aren't as smart (or Gods) as we might think. First of all how are doctors supposed to keep up on all the latest research. Second all the numbers come out in percentages - which are generalizations - and not round numbers.

This new article is long but very interesting (and definitely worth the read) about some new research showing how doctors do not necessarily understand the benefits of screening tests, as used as their examples. If 100 women get mammograms, how many will show something? Of the ones that do, how many will test positive for cancer? How many will be false positives? How many lives will be potentially saved?

"There are three other questions Gigerenzer advises patients to ask doctors to ensure they get all the facts:
  • "What are the alternatives?"
  • "What's the benefit and what's the harm?"
  • "Please tell me this in terms of absolute numbers. If 100 take this medication and 100 people don't, what happens after five years?"
Once they get the answers it is up to them to make up their own mind about treatment, he says."

That should get you where you need to be to make a decision. If your doctor can't answer this or hesitates, maybe they should do some reading and get back to you or find a doctor who can answer the questions.

Wednesday, July 9, 2014

Age makes a huge difference

At both my cancer diagnosis, I was told 'you are definitely too young to have this type of cancer'. Gee thanks. Was that supposed to make me feel better? Because it didn't.

At my second diagnosis, I joined a support group for newly diagnosed patients which included a 28 year old. Then there was me and then everyone else was a decade or two older. I could relate to the 28 year old's concerns more than some of the older women. We still remain tight as a group but the youngest of us, now nearly 35, is thinking about starting a family, if at all still possible. She has a completely different goal than the rest of us.

I know a 22 year old going through treatment for liver cancer and she had surgical drains that were big and nasty for weeks and couldn't wear the fun clothes she wanted. She wants to have fun with her friends and stop going to the hospital. I can sympathize. Its summer and time to have fun, not wear baggy clothes to hide drains.

When I was 19 and dealing with thyroid cancer, I didn't want to stay home as my friends went out. I also didn't want to have to explain the scar across my neck to everyone - the scar that hadn't been there at the end of my freshman year but was newly done and bright red across my neck. Turtle necks in the summer time were not and never will be a fashion statement.

Don't call young people with cancer superficial if we thought of fashion first and then going out with our friends. We were just trying to be ourselves and deal with what is important in our lives. Dating is way more important to a 20 year old than it is to most 50 year olds. Scars and drains put a damper on going to the beach and baring almost all. The idea of getting naked with someone which showing all your surgical scars can make you think twice or three times.. That can put another damper on your dating life.

I have always been a fan of Stupidcancer.org (and wish it had been around decades before). I read this article yesterday about how it got started and the support groups for young adults which have been meeting in CT for the past six years. It illustrates the different needs between young and older adults with cancer. If you are under 40 and dealing with cancer, get to one of Stupid Cancer's events and meet people who can relate.

Tuesday, July 8, 2014

Fatigue, needing sleep, being tired

I drag my butt out of bed these days as opposed to jumping out of bed. It is harder and harder to get up in the morning. I have never been a fan of snooze alarms but my husband introduced them into my life when we got married. Apparently now I need a snooze alarm. As I slept through the first four alarms this morning.

There is a difference between fatigue, needing sleep and being tired. To me the differences are:
  • Being tired means you need to rest to recover from exertion
  • Fatigue means chronically being tired
  • Needing sleep means needing sleep
I blame it on fibromyalgia predominantly. It causes fatigue. I get sleep and then I am too fatigued to get out of bed. I get tired also - after going for a walk or to the gym. Sometimes I am too tired to finish my workout. Sometimes I am too fatigued to cook dinner.

I plan my life carefully to avoid being too tired in mid-day and needing a nap.

Hmmm... I think I have another topic of discussion for my upcoming physical.

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