Saturday, August 18, 2012

Big Med

This week’s New Yorker magazine has an article titled “Big Med” by Dr. Atul Gawande.  (There is a link to the article under Interesting Articles/Information to the right).  It is about how restaurant chains combine quality, cost control and innovation.  His question is “Can health care do the same?”  Dr. Gawande is a surgeon at Brigham & Women’s Hospital in Boston and he has written several books about healthcare quality and cost control. 

Big Med talks about how restaurant chains, specifically the Cheesecake Factory have been able to deliver high quality meals at a reasonable cost across the country to more than 80 million people per year.  On the surface, it seems ridiculous to compare the US hospital system to the Cheesecake Factory but after reading this article, one might not think it is so far-fetched. 

Dr. Gawande says “in medicine too, we are trying to deliver a range of services to millions of people at a reasonable cost with a consistent level of quality.  Unlike, the Cheesecake Factory, we haven’t figured out how.  Our costs are soaring, the service is typically mediocre, and the quality is unreliable.  Every clinician has his or her own way of doing things, and the rates of failure and complication (not to mention the costs) for a given service routinely vary by a factor of two or three, even within the same hospital.”
 He writes about how medicine in the US is changing; most physicians used to be self-employed but now only about 25% are. The rest are employees of large health systems.  He says “Historically, doctors have been paid for services, not results…we’ve generally been paid for what we do, whatever happens”.  Now most health insurers are linking cost reduction and quality improvement targets to financial goals:  “They want to create Cheesecake Factories for healthcare”.

This article devotes a lot of words to the business side of healthcare.  I found this quite interesting because I have a business background, but others might find it long-winded.  Basically the theme is that by getting scale through consolidation of healthcare systems, procedures and costs, medical care can be standardized, leading to lower expenditures and better outcomes. 

Dr. Gawande also discusses how he selected the surgeon for his mother’s knee replacement surgery.  This was quite interesting and informative.

His view is that “We’ve let health-care systems provide us with the equivalent of greasy-spoon fare at four-star prices, and the results have been ruinous.  The Cheesecake Factory model represents our best prospect for change.  Some will see danger in this.  Many will see hope.  And that’s probably the way it should be.”

I am in the camp of seeing hope in this model.  I would prefer evidence- based treatments and standardized care with substantial oversight on treatment protocol.  Unfortunately, as I contemplate surgery, I am in the old model of non-standardized care, hoping not to be in the lower quartile of patient outcomes.

Sunday, August 12, 2012

Two Year Anniversary

This month marks the second anniversary of my cancer diagnosis.  My disease was identified by accident in August 2010 during a pre-operative sonogram prior to a hysterectomy.  The sonogram radiologist thought I had lymphoma. From what I’ve heard from other patients, this occurrence is not unusual.  Both my ob/gyn and my primary care physician (PCP) called me to discuss these results and to refer me to a hematologist/oncologist specializing in lymphoma.  However, because it was August, neither of these doctors was available for an appointment. They were either on vacation or they had just returned and were handling emergencies with current patients. I was scared and freaked out.  Here I was with cancer with no one to see me.  Finally, my PCP managed to get me in to Dr. L who agreed to see me as his last appointment before leaving on a two week vacation.  Dr. L was very nice and helpful given how scared I was.  He examined me and stated that I had no signs of lymphoma.  He did some blood tests and scheduled me for a CT guided biopsy. Upon Dr. L’s return, I learned that the biopsy was positive for carcinoid.  He then ran the CgA and 5-HIAA (both were elevated) and I was diagnosed.  I was fortunate. This was a very quick process, given how long it sometimes takes other patients to get a carcinoid diagnosis.  This was a good outcome, despite the NY medical community acting like Parisians and taking the month of August off.

In hindsight, the carcinoid was a better diagnosis than most cancers because 2 years later, with 5 CT scans, a 68-GA PET, and 19 Sandostatin LAR shots, I have had no progression or changes in my tumors.  If it had been some other cancer, I could have been dead by now. 

Nonetheless, since August 2010, I have been in what I would call the “cancer loop”. This means that I get scanned at least twice a year and then see the oncologist to find out if there has been tumor progression.  The best outcome that I can have is called progression free survival or PFS.  In between scans I get monthly shots of Sandostatin LAR which is anecdotally shown to slow tumor progression, although there have been no clinical studies to prove this outcome.  The Sandostatin has ended the only symptom I had, which was very occasional (once every 2-3 months) flushing, which never bothered me that much.  The monthly shots and the drug side effects cause me more angst than the flushing ever did.

Alternatives for my situation are surgery to remove the visible tumors or chemotherapy, which does not usually work that well for carcinoid patients.  I could go to Europe to get a radio-nuclear therapy called peptide receptor radionuclide therapy (PRRT). This is known to shrink tumors but not to cure the disease. Steve Jobs and many other Americans had/have PRRT in Europe to treat neuroendocrine tumors because it is not FDA approved in the US yet. 

Given that I continue to be progression free and feel no symptoms, I still question why:

A)     I am getting treated at all?
B)     I am taking Sandostatin when I have no symptoms and the drug has not been proven to slow tumor growth?
C)    I would need a major surgery as has been suggested by Dr. Liu and presumably, my current NY oncologist?

My doctors think my tumors have been there for many years. If they are not bothering me, why should I do something drastic that could make the treatment worse than the disease?  Perhaps if and when there is some symptom or progression I should then consider surgery?  I’ve heard that carcinoid tumors are found in about 1% of autopsies of people who died from something else so perhaps mine were just found early and I might never have a problem or symptom.  Is this just wishful thinking?

This week I am accompanying another carcinoid patient to a surgical consult. She is in a similar, though not identical, situation to mine and has been recommended for surgery. I am hoping to be a good listener and take notes for her. I also hope to learn about what is involved in this sort of surgery.  I want to be better informed as I go through this journey and consider my options.  I feel very lucky that I am meeting so many other people with this rare cancer through the online and local support groups as well as patient conferences.

Wednesday, August 1, 2012

68GA PET Scan at Vanderbilt

On Monday, I had my appointment with Dr. Eric Liu, followed by my scheduled 68GA PET scan.  This was my first scan other than a CT.  I was nervous about being injected with a radioactive tracer -- it just sounds a bit scary. 

Dr. Liu was very articulate and professional and spent a lot of time with me.  I was very impressed with my experience at Vanderbilt-Ingram Cancer Center.  Dr. Liu talked about my experience to date to gather some history.  He said the 68GA PET scan would answer two questions:

1)     Do I have appropriate receptors for the scan to work?
2)     What is the extent and location of my disease?

The doctor said I was the last of the 50 patients that were in this clinical trial.  He also mentioned, as has been debated in the on-line support groups, that he would appreciate it if I made a $2,000 contribution to Vanderbilt. The money would allow him to continue this important work to secure FDA approval for this scan in the US.  This cost was explained to me up front before my appointment so there was no surprise here. 

Dr. Liu said the injection should not hurt or cause any side effects but an EKG was required before and after the scan.  He assured me the radioactive tracer has a very short half life and that I would be fine going through airport security the next day.  We also discussed my doctor experiences in NYC, some of which had been “suboptimal”, and how it might work if I were to use him to treat my disease since I live so far away.

The prep for the scan included the EKG and the 68GA injection.  Then I drank the same large container of barium contrast that I have had for all my CT scans.  This process took about an hour.  The injection did not sting, burn or cause any adverse consequences.  The PET scanner is similar to a long CT scan machine. The drill is that you have to lie on your back with your arms above your head and not move for about 30 minutes.  The machine does not tell you to breathe in and out like the CT scanner does.  Some people have issues being put into the enclosed tunnel-like machine but I just kept my eyes closed and tried not to move.  Dr. Liu came into the room while the scan was going on – this surprised me as I had my eyes closed. He encouraged me to stay still and that I was doing a great job. It was a nice pep talk.

After the scan was over I went for the second EKG and then to lunch.

Later in the afternoon, we met again with Dr. Liu.  He said he did not have the report yet but that I was positive for the receptors and although I have extensive disease, there is no evidence of metastatic disease outside of the abdomen/pelvis.  With the help of a radiologist, Dr. Walker, we reviewed the scans. The CT scan was right beside the 68GA scan on the computer screen.  It was quite amazing, though I had no idea what we were looking at.  The doctors said I had very low liver involvement with one definite liver metastasis to the right lobe and a possible metastasis to the left lobe.  There is multifocal small bowel disease.  That is where the primary tumor is located. 

Dr Liu said that he definitely thinks that this is resectible because all of the tumors are in the abdomen. Surgery, although it is not curative, would mean that I would most likely die of something else other than carcinoid cancer.  He described the surgery as major - probably 6 hours in the operating room with a 6-8 week recovery period.  He would want to perform other tests such as an endoscopic ultrasound and surgery diagnostic labroscopy prior to any major surgery.  The Doctor also wants to get some live tissue for pathology work. My original biopsy slides are exhausted/used up.  

The doctor believes surgery is the best way to tackle my specific disease and believes sandostatin is just patchwork, of little long term help without a surgery.  He also thinks that Peptide Receptor Radionuclide Therapy (PRRT) would not be necessary after a surgery because most of the disease would be gone and it would take a very long time to grow back.  He said the best places for PRRT are Sweden (where he studied) and Bad Berka in Germany.  He said the major side effects from PRRT are kidney damage and bone marrow suppression. 

This was a lot of information to process and I am very scared to undergo a large surgery like he describes.   Dr. Liu said that he really would like to do this surgery himself and I would need to stay in Nashville for 2-3 weeks if he were to do it.  He said that he is very comfortable with Dr. Sasan Roayaie at Mount Sinai in New York as well. Dr. Roayaie is a liver transplant surgeon but also does this type surgery. 

I need to do some thinking and reviewing my choices about treatment.  I will wait for all the written reports and meet with my doctors here in New York to get further information.  I thought Dr. Liu was the most helpful and articulate doctor I have seen so far to discuss this disease and I would highly recommend him.