Disclosure

Today I told my boss that I would be having a gastrointestinal surgery in September and would be out for around 6 weeks. I informed him that the surgery is scheduled for September 16^th and we should talk about who will be filling in on my accounts while I’m out.  He did not ask any questions and deferred any questions concerning backup. I did not bring up cancer and he did not seem to care about the purpose of the surgery. That was fine with me.   I asked him about the probability that I could get terminated while out on disability due to a reduction in force (RIF – see my last post).  He said that he would not do that because it would be “dickish” and he’s not like that.  Nonetheless, I told him that I was concerned about my long term viability at the company. I did not want to come back from surgery only to be RIF’d a few months later.  He said that if he thought that would happen, he would likely tell me to go ahead and stay out for long-term disability.   I asked who I could talk to about insurance/medical issues should I have to go out on long-term disability and he gave me the name of a contact in Human Resources. That person referred me to our employee service center.  I called the service center for “leave management” and got a recording stating that no one was there and to leave my information.  ‘Someone” would call back!  So much for customer service – they did not even allow me to stay on hold for 30 minutes!  No one has called me back yet – maybe tomorrow….

Overall, this meeting went better than expected – not sure what I was so nervous about.

 

Surgery Scheduled for September

I am scheduled for surgery on September 16^th at Brigham & Women’s Hospital in Boston.  Many people, including my doctors, have asked why I postponed the surgery until September.  My primary reason is fear about this procedure in general, especially when I am asymptomatic.  I understand that there is a possibility of a bowel obstruction but I need to prepare myself emotionally and psychologically for the operation.  I also have a family wedding in August and want to be healthy for that event.   I am lucky to be able to think about and plan the surgery without an immediate major medical problem like a bowel issue.  

I wanted to have the operation in September because the summer will be over and everyone will have returned from vacation and gotten back to work.  I also wanted to do it after the Jewish holidays because many of the healthcare staff may be out for those days.  Dr. Clancy, my surgeon, operates on Mondays so that is how I arrived at September 16^th.

Brigham & Women’s Hospital's admitting office has already sent me some material about the hospital, policies and procedures.  A book they suggested is Prepare for Surgery, Heal Faster by Peggy Huddleston. It is about mind-body techniques to reduce anxiety, use less pain medication and heal faster.  There is also a set of 2 healing CD’s that one can buy with the book.  I bought both items in the hospital gift shop last week when I was in Boston. I have not read the book or listened to the CD’s yet but it is definitely on my “to do” list.  Two of the other things I need to sort out are:

1)     Finding ourselves a temporary apartment in Boston.  We will be required to stay in the area for post surgical appointments and in case of complications.

2)     Determining disability/healthcare coverage situation at work - more complicated.

I’ve looked into temporary apartments in Boston but it is still early for a September rental.  I think I’ll need to wait until mid-July to August to get one pinned down.  I have spoken to a few realtors, checked out the neighborhoods and made some progress.

The work situation is very complex. I work for a company that has good benefits. It’s also a very competitive work environment and the company almost always does a reduction in force (RIF) of 5% - 10% of its staff every year, usually just before Thanksgiving.  I’m not sure whether to tell my boss that I have cancer or just that I am having a major gastrointestinal surgery and could be out for 6 or more weeks.  I’ve asked several people about what to do when speaking with my boss. The answers have been emphatic but very mixed – no decisive opinion either way.  My boss knows I have been out for medical tests and procedures and has asked about it but in response I have been vague but not misleading.   Moreover, I’m not having a very good year for bringing in new clients.  I’m wondering if I could be included in our annual RIF later this year. 

If the surgery does not go as well as expected and I have longer term problems, I would have to go out on long term disability.  My company has a long term disability income policy that pays 40% of my base salary.  I don’t understand a lot about how it works and coordinates with Social Security disability income.  Once I talk to my boss, I will try to discuss this with a good benefits person.

In addition, if I go out on long-term disability, I’m not sure how my medical insurance coordinates with Medicare.  I understand that there is a 2 year wait for Medicare after applying for disability. I’m wondering if I will be on my company health insurance or COBRA until Medicare takes effect.   COBRA lasts for 18 months and then I’m not sure exactly what happens for the other 6 or more months.  I’ve heard of COBRA continuation coverage and HIPAA plans.  I’m not sure how these interact with my company health plan if I end up on long term disability or if I am RIF’ed - this term is used as a verb in my company!

If I get RIF’ed, I might not be able to get long term disability. I’m not sure if they would RIF me if I were out on short term or long term disability.  I'm sure my global benefits department already knows I have cancer from looking at my medical expenses. My situation would be no surprise to them, just to my boss and department.  I'm hoping for a speedy recovery and back to work with no layoff but I need to understand the issues if that does not happen.

All of this gives me a big headache!  If I lived in another developed country, the employment and healthcare issues would not even intersect as they have single payer programs not affiliated with work.  Stay tuned. Once I figure this all out, I’ll try to explain it to the best of my ability.

Meanwhile, I'm going to enjoy the summer and prepare for September.

More Provocative Articles on the Health Care System

This week was a good one for health care articles.  There were 3 in particular that caught my attention and resonated with me.
 

1.      “The $2.7 Trillion Medical Bill” in today's The New York Times :

http://www.nytimes.com/2013/06/02/health/colonoscopies-explain-why-us-leads-the-world-in-health-expenditures.html?ref=health

2.     "Finding the Right Hospital" in The Atlantic on May 28^th:

http://www.theatlantic.com/health/archive/2013/05/finding-the-right-hospital/276304/

3.      "A Lone Voice Raises Alarms on Lucrative Diabetes Drugs" in The New York Times on Friday May 31st:

http://www.nytimes.com/2013/05/31/business/a-doctor-raises-questions-about-a-diabetes-drug.html?ref=health&_r=0

 “The $2.7 Trillion Medical Bill” reminded me of the Time magazine article by Steven Brill a few months ago on the same subject.  The main points were about the variability in costs across different locations for the same procedure. Most patients don’t know how much a procedure costs until after it is done and the insurance company has processed or denied their claim. Both articles compare prices of medicines and procedures across the world, showing that the US has the highest costs.

Just this past week, I reveived my reimbursement information from Aetna, my health insurer.  My Sandostatin shot for April was billed to Aetna at $13,343 and reimbursed at $8,757.  My March Sandostatin shot at the same dose was billed at $5,000 and reimbursed at $2,722.  I recently changed doctors but I can’t imagine why two centers can charge such widely different amounts for the same shot!  I called Aetna to find out what was going on and the person I spoke with said that different centers have their own reimbursement rates for procedures and that the Sandostatin shot may be more expensive but other procedures may be cheaper.  I also believe the price of Sandostatin may have gone up because I’ve seen a few postings about that on the ACOR online message board.  I guess as long as my insurance company is covering it, I shouldn’t worry but it does make me a bit crazy!

I think it would be helpful if there were more standardization of prices and if it were possible to know up front what everything would cost.  It would make it much easier to decide which procedures to have, to shop around for better prices and to make sure that medical costs would not cause financial hardship. 

The second article covers patient satisfaction ratings and how, if at all, that may influence where one should go for treatment.  It was very interesting because patients may not be the best people to evaluate their medical care. The article cites some examples where the ratings are high but the outcomes are worse.  One commenter on the article stated “The closest analogy to hospital care is auto body repair. Both are insurance-paid and cost insensitive. And in each case the customer generally presents in distress, either by ambulance or tow truck, and in no position to choose. While both may advertise quality of service the customer is unable to judge that quality unless things go drastically wrong.”

As more hospitals publish patient satisfaction scores and more healthcare professionals are being compensated based on these factors, it is becoming a controversial issue.  One of the blogs I read, “Skeptical Scalpel”, shown on my blog list, frequently deals with the issues involved in hospital/doctor ratings.

The third article deals with a Dr. Peter C. Butler who found that a class of diabetes drugs may cause pancreatic cancer. It states in part: “Public Citizen and the Institute for Safe Medication Practices, two watchdog groups, have both arrived at the same finding….Dr. Butler faces powerful opponents in the makers of the drugs and many diabetes specialists, who say his studies are contradicted by other evidence….More information could come out in June when the National Institutes of Health will hold a two-day meeting on possible links between diabetes, diabetes drugs and pancreatic cancer. Dr. Butler will be one of the speakers.”

This article is less relevant than my usual rants but it just reinforces my concerns about the influence that big pharma has on the type of information that is released to the public and regulatory agencies. Both the effectiveness and potential hazards of drugs may escape public scrutiny until the class action lawsuits begin.

 

These articles continue to highlight the major problems and potential solutions within the US healthcare system. I’m not sure how things will ever change from the convoluted mess that we have now.

Happy 1st Birthday to Beth’s Adventures with Carcinoid Cancer!

Today marks one year of writing my blog.  When I started posting, I was frustrated by my experience in the medical system and concerned that I did not have a doctor that I could trust.  Now I am on my third carcinoid specialist and feel comfortable that my doctor is working with me not against me and that there is a strong team backing her up.  I’m still frustrated with the medical system but have learned that I can’t change it so I will work with it. 

I didn’t really have any expectations for this blog except to discuss my experiences and vent my frustrations.  As of today, Beth’s Adventures with Carcinoid Cancer has had 10,000 visitors!  I’m quite happy that the blog reached that milestone so soon and exactly at the one year mark. Over the past year, I’ve met some nice people and learned a lot from my writing experience. Not being a super savvy computer user, I’m not sure if the 10,000 visitors are distinct users or could be 1,000 different people visiting 10 times each. 

I am a bit of a data geek so I find it interesting to look at the numbers that Google gives concerning visitors.   For example, the top 3 posts are as follow:

Post	Number of Visits
The Difference between a Flush and a Hot Flash	920
September 11th	666
Bitter Pill and Gorillas in CT Scans	325

I think a lot of people get here by asking a search engine “what is or how do you tell the difference between a flush and a hot flash?” Then my blog comes up.

When looking at where the visitors come from, it is very US focused but many visitors have also come from overseas.  Just yesterday there were 20 visitors from Jordan!  I wonder how that group found this blog on the same day – perhaps they were together in a class? The table below shows the top 10 countries visitors came from:

Location	Number
US	6,160
France	709
Germany	380
UK	355
Russia	240
Canada	172
Sweden	102
Australia	66
Mexico	49
Singapore	40

I also get information on what operating system and browser the visitors are using and it looks like this:

Operating System	Percentage
Windows	74%
iPad	7%
Macintosh	6%
iPhone	5%
Linux	2%

Browser	Percentage
Internet Explorer	33%
Firefox	28%
Safari	17%
Chrome	11%
Opera	5%

Other information that I can’t get from online users are facts such as whether more women than men are viewing my blog, their average age or the type of cancer they have. I’m guessing that more women than men are viewing it because of the popularity of the flushing vs. hot flash post.  It could also be because that post mentions “Fifty Shades of Grey”.

Overall, I’m in a better place now than I was last year at this time and I think this blog has helped me get there.  On to year two!

The Cancer of Optimism

In yesterday’s New York Times, there was an Op-Ed about doctors being overly optimistic with their patients about their prognosis.  It was written by a resident physician just starting his medical career.  He discusses a patient who unexpectedly died.  The writer called himself a “victim of irrational optimism, a condition running rampant in both doctors and patients, particularly in end of life care”

He goes on to quote some statistics from a cancer study from The Annals of Internal Medicine in 2001 that stated “doctors were up front about their patients’ estimated survival 37% of the time; refused to give any estimate 23% of the time and told patients something else 40 % of the time. Around 70% of the discrepant estimates were overly optimistic”.

“This optimism is far from harmless.  It drives doctors to endorse treatment that most likely won’t save patients’ lives, but may cause them unnecessary suffering and inch their families toward medical bankruptcy.”

“Studies have shown that patients almost universally prefer to be told the truth.  If physicians cannot deliver the hard facts, not only do they deprive their patients of crucial information, but they also delay the conversation about introducing palliative care.”

He does on to cite a study that showed that cancer patients who had palliative care combined with standard care lived a few months longer than those with standard care alone.  The writer went on to state that nonetheless, doctors usually insist on more invasive treatments even when there is little chance that they will work. 

It appears that patients are not being given truthful information about their prognosis and how effective the next invasive treatment will be. Doctors are telling patients to undergo more invasive treatments because they are hoping they might work.  The problem is that these procedures lower quality of life without much extra longevity. 

If I get to the point where a new treatment is not likely to work, I would hope that my doctor would tell me to enjoy the rest of the time I had without furthering invasive procedures if they are futile.

The Op-Ed can be seen in the link below:

http://www.nytimes.com/2013/05/05/opinion/sunday/the-cancer-of-optimism.html?pagewanted=all&_r=0