Three Year Cancerversary!

This month is my 3 year anniversary of being diagnosed with carcinoid cancer.  Since then, my tumors have not progressed at all.  I am still asymptomatic.  I believe my case is somewhat unusual because my primary tumor has not been found and I have one very large tumor that is hanging from my liver and in front of my right kidney.  This tumor measures 8x10x12 cm and is pressing on my small intestine, causing an indentation that can be clearly seen on a CT scan.  It is this tumor that could cause a bowel obstruction. I also have other tumors scattered around my abdomen and pelvis.

This large tumor gets the biggest reaction from doctors.  It is quite mobile and sometimes doctors can feel it and other times they can’t.  That’s kind of weird!  The general reaction is that they have not seen such a large tumor in that location before.  These tumors have been with me quite a while and I have no idea when they started or continued to grow.  I’m just happy that there has been no progression since my diagnosis. 

I re-read my post from last August writing about my second anniversary. I am amazed at how far I’ve come in the past year in terms of improving upon my medical care and getting clear and articulate answers to questions concerning my treatment.

Last August I was questioning everything about my treatment including why I was taking Sandostatin and the justification for a large surgery when I had no symptoms.  Now I have a whole new team working with me and it has been much better in terms of information flow.  I feel a lot less stressed about my care, even though I’m about to have a big surgery.

This week has been a busy one in my cancer life.  On Friday I had a CT scan, an appointment with Dr. Chan, a meeting with a nutritionist and then my Sandostatin shot.  Dr. Chan said my CT looks stable with no changes. 

I also met another carcinoid patient from the Carcinoid Café on Facebook.  We had been messaging each other for the past two weeks. She had an emergency appointment Friday at Dana Farber so we met in the radiology waiting area.  It was nice to meet in person.  Both her CT and mine came back stable with no growth in tumors.  Good for us!  On to year 4 for me.

Paying Until it Hurts and Medical Fantasies

The cost of medical care in the US is repeat theme in this blog, primarily because I find it outrageous.  I keep bringing it up because the New York Times is running a series on the cost of common procedures in the US. The most recent article is in the paper today and it caught my attention yet again.

The first article was on colonoscopies, the second on childbirth and today's on hip replacements.  The links to the articles are below:

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

http://www.nytimes.com/2013/07/01/health/american-way-of-birth-costliest-in-the-world.html?pagewanted=all

 

http://www.nytimes.com/2013/08/04/health/for-medical-tourists-simple-math.html?pagewanted=all

The headline from today’s article concerns a Michael Shopenn who was turned down by his insurance company for a hip replacement due to a pre-existing condition. Mr. Shopenn started looking outside the United States for treatment. He found a hospital outside Brussels that charged only $13,660.  The cost in Belgium was about 6x less than in the US, where the typical charge is $78,000.

 

This got me thinking - this is purely my imagination running wild about how I might structure my cancer care if I had the ability and the means to do it.  My medical costs, outrage, business background and love of travel is fueling this fantasy.

My insurance covers between $2,500 and $8,500 for my monthly Sandostatin shots.  Let’s just say for example, that I could get a Sandostatin shot anywhere outside of the US for between $417 and $1,417 (the insurance coverage prices above divided by 6).    If I could get my insurance to pay half of what they are paying for the drug in the US ($1,250 - $4,250), I could find places to do my shots and  then pay for my airfare and hotel with the leftover funds.  I could also include my spouse in the cost but to be fair, we would pay for his travel expenses out of our own pockets. 

We could have great travels with trips all over the world while handling my cancer care.  Since I know that my shots are going to be every 28 days, I could book these trips well in advance to take advantage of early booking discounts.  It would be a win-win for both me and my company’s cost of insurance.  I probably don’t have enough vacation to do this for all 12 months but even if I did it for 6 months, the cost savings to my company would be substantial. 

Some places where I could surely get cheaper Sandostatin shots would be Switzerland, UK, France, Thailand, Belgium, Canada, India, Argentina and Australia, among others. I’m sure I could find some great things to see and do before or after my doctor appointments.

I’m guessing that most doctors in the US would not approve of a patient getting only half or none of the shots at their location.  They would not want to be responsible for anything that could happen when I got the shot elsewhere.  My company and their insurance carrier would never agree to this either.  Oh well, it was fun to think about.  Back to reality!

 

 

Disability Leave - Moving Toward September

I spoke with a person from our leave management department last week. I told her I am having surgery on September 16th.  She sent me a bunch of forms and a checklist of things to do prior to, during and after short-term disability leave.  She also explained that our company’s disability leave policy covers the following:

• Paid 100% of salary for the first 13 weeks on disability

• Paid 80% of salary for weeks 14 – 26 out on disability

• If I still need to be out after 26 weeks, my case will be reviewed by the insurance company that handles my company’s disability claims. If I were to go out on long term disability, my income would be 40% of salary.

The short-term disability leave is covered under the Family and Medical Leave Act (FMLA) that allows for 12 weeks of unpaid leave during any 12 month period.  Because disability leave is covered under FMLA, I will keep my health insurance while out on leave.  The FMLA leave runs concurrently with my company’s short-term disability policy. The short-term disability requirements are in addition to, and not instead of those for FMLA.  Because my leave will be taken continuously, not intermittently, I do not have to use up my vacation and sick days before I get paid by the company’s short-term disability policy. 

The completed forms that are required are:

• Request for Short-Term Disability Review.  I fill this out.

• Certification of Health Care Provider for Employee’s Serious Health Condition (FMLA).  My doctor completes this form.
• Return to Work Certification Form (not until I go back). My doctor also fills out this form.

I completed the first one and sent the second over to Dr. Clancy’s office. My company outsources its disability program to an insurance company. The letter I received from the leave management person stated that if my claim is approved by the insurance company, I will receive a telephone notification and an approval letter via mail.  This letter will outline the process and my responsibilities if my health care provider recommends an extension of my disability leave beyond the initial approval period.  I’m not sure what happens if my claim is not approved by the insurance company – the leave management person said that should not happen.

Wow! This seems highly paperwork-intensive!  The checklist they gave me seems quite thorough and now that I have an assigned medical leave person, I can always call with questions.  At least my company is making a complex process a bit easier by spelling everything out to me.  So far so good!

Meanwhile, we leased an apartment in Boston for part of September/October.  I have a place to recuperate. One more item off my to-do list.

Interesting Article on Clinical Trials

There is a thought-provoking article in the Sunday Review section of today’s New York Times titled “Do Clinical Trials Work?” The Sunday Review section is where the opinion and editorials are, not the news.  In addition, the author of the op-ed is Clifton Leaf, who just happens to have a book on this subject being released next week.  Even if you ignore the point of view in this article, the information on how clinical trials are designed and how phases 1, 2 and 3 are different is informative. It also defines placebo and double blind trials.  I thought it was interesting reading.  The link is below:

http://www.nytimes.com/2013/07/14/opinion/sunday/do-clinical-trials-work.html?ref=opinion



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.