Waiting for Cancer Research

After 12 years (how the heck did that happen?) of breast cancer coping, I have actually seen some cancer research go from new or in clinical trials to become standard of care. This includes length of hormonal treatment for breast cancer patients. But it does not include many, many others.

Some cancer 'breakthroughs' are still in trials, or have vanished because they didn't work. They provide us cancer people with instant elation at the possibilities it hints at, followed by deflation as we realize it is years or decades in the future.

An example of this is this news that at UVA they are working to find a way to stop triple negative breast cancer, which is aggressive and harder to treat than other types of breast cancer. Here's the elation:

"So-called “triple-negative” breast cancer is a particularly aggressive and difficult-to-treat form. It accounts for only about 10 percent of breast cancer cases, but is responsible for about 25 percent of breast cancer fatalities.

Triple-negative breast cancer earns its name because, unlike other breast cancer subtypes, its cells test negative for estrogen and progesterone receptors, as well as for a gene called HER2. Therefore, it cannot respond to therapies that inhibit cancer-growing signals that come from estrogen, progesterone and HER2. The only treatment options for triple-negative breast cancer are surgery, radiation therapy and chemotherapy, each of which cause difficult side effects and rarely lead to remission.

Triple-negative breast cancer is also highly variable from patient to patient and even among tumor cells of a single patient, making it difficult to understand and treat. Other breast cancer subtypes are homogeneous, more predictable and treatable.

University of Virginia researchers are working to study this variability and find an end-around method to stop triple-negative breast cancer, by seeking out unknown or little-understood routes toward shutting down uncoordinated growth."

Followed by the deflation:

“We’re still early in this investigation, but it may be a step in the right direction for getting a handle on ways to target this very difficult to treat breast cancer subtype.”

So how many years do we have to wait for this 'step in the right direction' to lead to something that is routinely available?  Will my friends with triple negative still be here to benefit from it or will it be here too late for them? 

I Need Playtime Too

A new study finds that pediatric cancer patients can avoid anxiety required anesthesia before radiation treatment... by... (wait for it) ...substituting playtime. This was the result of  work by a nurse at Johns Hopkins who found that there was no standard protocol other than to routinely give anesthesia to pediatric patients.

"What we found was that we had no standard; we were just basically signing kids up for anesthesia because they were anxious, because of the unknowns. We had complications happen under anesthesia and radiation. Another component was that it was taking up a lot of time. Now, with this program, we can avoid the risk and complications that come along with anesthesia as well as give back that precious time to the family. Kids get stressed staying in radiation too long."
There is a commercial that features a male pediatric oncology nurse giving a patient a shot (I think) and distracts her by singing a song with her. Why only for kids?

I could use playtime to avoid anesthesia before some stressful occasions. Why not?

Honestly every time I go for some stupid scan I don't want to sit in a chair and stress about what they may or may not find after two cancer diagnoses. Nor do I want to watch a TV program on something I don't care about. Nor do I want to pretend to read a book or articles on my tablet.

I would prefer to be playing games and having fun. Or out having coffee with a friend. Or anywhere but in a sterile waiting room watching my blood pressure go through the roof.

Let's start a movement to make hospital waiting rooms less sterile and more focused on patients needs. Where I go waiting rooms have padded chairs, wifi, TV, and usually exterior windows. I want more than that. I want snacks. I want volunteers wandering around talking to patients to help them relax. I want bright colors. (I really just want to be healthy and never have to go to the hospital but I also know that's not going to happen.)

Medical care has come a long way in terms of being more patient friendly but I think there is a long way to go to help reduce patient stress.

Waiting Around

I hate waiting. I pride myself on being on time. I think that people who constantly run late are rude and selfish because they are making people wait on them. They are not considering anyone else's feelings or needs. Basically that is just damn rude.

Social occasions aside, waiting for doctors is even worse. Especially when you are not feeling well. This is one reason why I do not like Emergency Rooms and will only go if I am literally dripping blood (and will therefore be put to the front of the line) is I can't stand waiting around.

A year or so ago, my opthamologist asked me to find a new one. Basically I got fired by my eye doctor because I dared to complain about waiting so long and not being a good patient. I was pissed off about waiting and decided to complain on Yelp.

In comparison the hospital I go to has had a policy for a long time that patients should not be kept waiting more than 15 minutes. I had a doctor in the 1980s who had a sign on her office door that said "Patients Should Not Be Kept Waiting For More Than 15 Minutes". Sometimes this works, and sometimes it doesn't.

In recent years it has gotten even better. Some departments which seem to run late often keep white boards posted in the waiting rooms telling you about doctors who are running being. All departments when you check in usually tell you if a doctor is running behind. And they have signs in the waiting rooms encouraging you to ask if your doctor is running behind if you are kept waiting more than 15 minutes past your scheduled time.

I love this policy. I love being kept on top of how long it will be.

I just read an article this morning about how some other Boston area hospitals are finally understanding the importance of not keeping patients waiting. Their reason? Patients are finally speaking out on social media on being kept waiting.

If you are a patient at the 'holy hospital of the best doctors in five hundred miles' you are supposed to sit quietly and wait to see the doctor who is going to cure you of everything quietly for hours and hours. I think that's crap. Social media is putting pressure on them to finally act. How nice.

As a patient, I say 'speak up on social media' to pressure your medical center to treat you as a patient who is a person as well, instead of being a patient patient.

Twenty Four Seven Medical Care

It has always aggravated me that if you get sick on a weekend you either wait until Monday to see a doctor or end up at the Emergency Room which is the wrong place to be unless it is a true emergency. And the horror stories of the surgical errors over the weekends because the only surgeon on call was two hours away.... I will admit that this has improved in recent years with the advent of more walk in clinics and longer hospital hours. But, we get sick and stay sick 24/7/365.

And the worst is having to wait all weekend for test results. Why can't someone read the damn test results and tell us on Saturday instead of making us wait until Monday for an answer? Any cancer person is familiar with this issue

Forbes Magazine wrote an article recently on New Year's Resolutions The Key Players in Healthcare Should Make. This issue shows up on the third page, after recommendations for doctors to improve their practices and synching electronic medical records.

So why do hospitals essentially close down on weekends? I completely understand administrative offices working a five day work week and the convenience of having all the staff available at the same time for better communication, yada, yada, yada. But why do medical staff also work only Monday-Friday? We don't just get sick between 8 and 5 on Mondays to Fridays?

There is always the complaint about too many patients coming in. But what if the hospital hours for medical care were stretched over seven days instead of five? The staff could still work the same number of hours but just over a longer period of time. And if you get a medical test, you don't need to wait for someone to read the damn report. If you were admitted over the weekend, you don't need to wait until Monday for surgery to be scheduled. I can go on.

'Bankers hours' medical care should be a thing of the past. The only people who benefit from being hospitalized over the weekend is the hospital - they get to bill the insurance companies for more nights' stays. Wouldn't it be better for the patient to be operated on over the weekend and then get out of the hospital?

What if hospitals were open for care half the time instead of a quarter (five nine hour days = 45 hours/week or 26.7%) of the time? What if hospitals were open 7am-7pm Monday - Sunday? Waits for appointments would be shorter. More patients could be treated. Patients who work full time could see doctor's at more convenient times. This is only 50% of the time, not 24/7/365 but its a big step toward more access.

I know this would require more staff but then hospitals would have less down time and would operate more efficiently and their expensive testing and surgical equipment would get used more and therefore be more profitable. And the patient's would be better treated and less stressed - quicker access to care and more information on their conditions.

Just an idea... I'm just a professional patient who hates waiting to find out the answers.

I got fired by my eye doctor

I consider myself a proactive and vocal patient. With my health I see so many doctors and spend a lot of time trying to make sure everyone is on the same page. They all need to be aware of my ailments, medications, and allergies. I have so many ailments that I often present issues to all my doctors they do not see every day. My medical care is important to me and I want a medical team which cares about me.

I have never been a huge fan of my eye doctor. I started going to them because of convenience. I have never felt they had the patient's interest in mind, they were really out for the money. At every visit I felt like I was part of a cattle call.

When you arrive, you stand in line and are greeted by one of four receptionists. They are okay not great. Never very social and treat you as just another number. Then you go sit in the big waiting room, unless you are there for contacts which has a different waiting room or for the other doctor who is on the first floor. Then you sit and wait to be called. No one talks. Every one sits there quietly. Its not fun. And you always have to wait for a good while before being called. Its just a pain in the butt.

Once they finally call you, you get your eyes quickly checked by a tech and then sit in the hall. Then another tech finally calls you again and you are seen for a few minutes. Your vision is checked and eyes are dilated if necessary. Then you go back and sit again. Finally you see an eye doctor for about five minutes.

I know they have to wait for your eyes to be dilated. But all the waits add up. I have never been out of there in less than 1.5 hours. And I never feel like I got individualized care while there.

My most recent visit was earlier this month. I was pretty peeved. I arrived on time and greeted by an uncaring receptionist. Then I went and sat down in the first waiting room for half an hour. I went to ask if they were running late as I had been waiting so long and their response was 'you are the next one to be called'. I asked if they always ran late and they just said 'you are the next one to be called'. I asked if they ever told patients when they checked in that they were running late and they said 'you are the next one to be called'.

I gave up and went back to the waiting room and said loudly something along the lines of they didn't seem to care if patients waited a long time. The woman next to me said quietly 'you always have to wait, they are double booked'. I said that's just rude.

So when I saw the first tech, I said something to her and she said she wasn't aware of any delays. Then when I saw the second tech, I asked her and she said she would speak to the office manager. Finally when I saw the doctor, I said something to him. He seemed surprised that waits were that long and said he would look into it.

As always, I review everything, especially things that annoy me. So I Yelped it and gave them 2 stars. Then I got a follow up email from them and a call from their operations person. She did ask me why I was upset and said she would look into it. She mentioned something about the eye doctor was concerned I had written an online review. I thought that was resolved.

Then yesterday I got a letter in the mail stating that I should look for a new ophthalmologist. So I updated my Yelp review and gave them 1 star.

I was ready to find a new eye doctor after my unpleasant last visit. And they are just forcing my hand in this. But I still do not think they are about their patients.

Fifteen Days? Really?

This I do not understand. I found an article on the how this new test speeds up the testing of the sentinel lymph node in breast cancer surgery in the UK. Previously it took 15 working days (!!!!) to get the test results. That's three weeks. That's completely crazy.

When I had my (bad) lumpectomy here in the US, I was told the instant test during surgery of the sentinel node had a margin of error of 50% and it really wasn't worth doing. The sentinel node was checked by the lab after surgery to confirm the results. I know several women who were told that the test they had during surgery was wrong so I guess my surgeon was right on this.

Now that was six years ago so technology must have changed and now there is a new test available in the UK for instant testing of the sentinel node during surgery. I hope the margin of error is less now.

But I digress. I just do not understand why it takes a lab in the UK 15 working days to confirm the presence of cancer. Three weeks? In my non medical understanding it is a relatively quick test - not like the ones which need to grow cells or something.

I remember being promised my results within a week and getting them in about four days. So why does it take three weeks on the other side of the ocean?

Blah, blah, blah - with your medical history we have to be sure

Yesterday I had my annual physical. Or Woman Wellness Exam or whatever the correct term is for it these days.

It did start off interestingly while I was waiting to check in at the desk, there was a woman who was being told she can't call the doctor's office every day making demands, should go back to her psychiatrist, and perhaps become an inpatient at a psychiatric facility. We'll just say that I was very happy that was not me. My health/mental stability is not that bad.

My primary care, who I like, just had a baby and is out for the summer on maternity leave so I met with her nurse practitioner who was one I had not met before. She was very nice and very thorough in her questioning after she let me go through my list of questions. We talked about my ganglion cyst which makes my wrist hurt, we talked about my arthritis, we talked about back pain, car accident, back procedures, previous surgeries, my general health, how much I exercise, and more. Then she examined me and thought I was pretty normal (wow!).

I left with two to-do items - one is a cholesterol blood test which can be done the next time I have blood work done - every two months for rheumatoid, every six months for thyroid - so whenever the next one rolls around.

The other is a much bigger test (where I might feel a 'little pinch') that she wants done in the next two weeks. I can understand wanting the test but I didn't realize she considered it to be more urgent. That part I don't like. I'm not looking forward to the test itself but really dislike it when I have tests which must be done right away.

Grrr.... All the little 'what if' voices in your head start to kick in when I have 'urgent' tests.

It is scheduled for July 5 - which is fine because we had no plans to go away for the weekend - which is 2 1/2 weeks. I have no idea why it is so urgent. But of course I get to stress about it. I will take my avoidance mode until then and discuss it in more detail when I feel like it.

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 Dr Google

I have posted about the evils of Dr Google before. As you can see from the image above (stolen borrowed from Facebook), I am not alone. My doctors are working on another mysterious medical ailment for me and I have an appointment in a couple of weeks to figure out what it is. When I know what it is I am sure I will blog about it. All I can say now is that its related to all the pain in my body that does not seem to be limited to my back.

While why I wait for that appointment, I am spending too much time on Dr Google seeing if I can self diagnose myself. This is a very BAD thing to do. I need to stay away from Dr Google in the meantime. It is so tempting to hop online and see if I can figure out what it is before the doctor does. Dr. Google is EVIL. I need more patience.

How long would you want to wait?

For biopsy results for potential cancer? About 30 seconds. In New Zealand you get to wait 10 days, unless for breast cancer where the wait currently is 5 days. This five day turnaround is now under fire due to errors by pathologists who are rushing to get their job done.

Where I go for treatment, a biopsy is usually available in a few days - sometimes longer for other cancers. I have learned they usually tell me it will take about a week but often I hear much sooner.

There are two sides of the waiting for results issue. First comes the patient who wants the results in a nano-second. (Thank you to Amazon to training the public to expect everything instantly.) Patients don't want to wait. Waiting causes stress. Waiting causes crankiness AND crabbiness. Waiting causes that little voice in your head to tell you that it will be really BAD,

But on the other side are the pathologists who need the time to do their jobs. We don't want them to rush and make mistakes - which is what happened in New Zealand (which is why there was an article on this that I read). That is really BAD.

However I find the idea of waiting 10 days for a biopsy result to be too damn long.

Pet peeves

One of my biggest pet peeves is tardiness. I hate waiting for anyone and I always try to be on time. I do not claim to be perfect as I am human and I am late sometimes. But I detest waiting for the same people over and over again. I don't like waiting for dinner companions, coffee dates, and doctors.  I detest waiting for people so much that I am sure I have blogged about this before.
 
The hospital I go to has little signs up saying that if you have been kept waiting more than 15 minutes to bring it to their attention at the registration desk. I have seen nurses come out and make an announcement that Dr so and so is running behind. I understand that sometimes doctors need to take more time with a patient who is having a bad day. We want our doctors to be able to do this but it may make them run behind schedule. So as long as they tell us, then it is okay. You also need to do your part by showing up on time. How is the doctor supposed to do his job if you aren't there at the scheduled time? Are you going to be late or are you not going to show up at all?

There is nothing worse than sitting around waiting for someone who is late and was the one who selected the meeting time and place in the first place. If you can't make it on time and know that, change the time, don't make me wait.

Even worse are contractors or other people you hire who are taking longer than estimated on a job and don't tell you. If they say two weeks and in week three are clearly not done and have not new estimate of an end date, I would get rid of them. When we redid our kitchen last year, I had a one month window for everything. I was very clear with the contractors that was the time frame and I wasn't budging. We planned ahead and it was done on time. I also was very sure to keep an open dialogue with them on what was needed so they could make me aware of unexpected issues arising (which they always do in home improvement) so they didn't cause delays and expense.

The reason why this is on my mind this morning is there was an article in the morning paper on how being late can harm your work image. "How often have you heard a co-worker say something like, “Sorry I’m late, I was on a call with . . .’’ It’s really not an excuse. If it happens once, it may be understandable. But when you do it repeatedly, it shows you are disorganized and disrespectful to the people you have kept waiting. And that is not a good image for you to build. Be on time. It’s the first thing you can do to being more successful at work."

Its not just about being more successful at work, its about being appreciated by your friends and family by doing what you said you would do and not letting them down or being disrespectful.