“Not dread of cancer or death but rather dread of cancer treatments has left me in its thrall” – Susan Gubar
As I continue to contemplate surgery to remove some of my carcinoid tumors, I read two articles this week that scare me. I am still asymptomatic. Symptoms are defined as a “subjective indication of a disease or a change in condition as perceived by the patient”. In my case, one blood and one urine marker remain higher than range but are causing no symptoms. I liken it to having high blood pressure or cholesterol that carry no symptoms but can cause heart attacks or stroke over the long term. When diagnosed with these conditions, patients usually take drugs such as statins or blood pressure medication.
My doctors have told me that these high blood/urine levels may cause future health issues including fibrosis that causes heart valve problems and diarrhea due to collapse of the mesentery. Not all carcinoid patients have or develop fibrosis. I have been taking Sandostatin LAR for nearly 2 years now. My high blood marker has come down substantially but is still higher than the desired range. My urine marker is still nearly as high as when I was diagnosed in August 2010. Since starting Sandostatin LAR, I am not flushing anymore, but that was a relatively rare occurrence. My doctors are recommending surgery to reduce the secretions from the tumors and get my blood and urine markers back into normal ranges. The procedure they propose would be long, complicated and would require a substantial recovery period.
Since my quality of life (QOL) is very high now, I hesitate to have a large surgery. Perhaps it makes more sense to wait until I experience some symptoms.
The cover of this month’s Readers Digest has a picture of a doctor and the headline “50 Secrets Surgeons Won’t Tell You”. The following comments were from doctors and here are a few of their quotes:
“Don’t assume your doctor’s recommendation is best. Referrals may be politically motivated or be given because the doctors work within the same multi-specialty group” – Howard Luks, MD
“You should know that practically all surgeons have an inherent financial conflict of interest. That’s because they are paid approximately ten times more money to perform surgery than to manage your problem conservatively” – James Rickert, MD
“Always ask about non-surgical options and whether there’s anything wrong with waiting a little while. Surgeons are busy and they like to operate. A professor from my residency would say ‘there is nothing more dangerous than a surgeon with an open operating room and a mortgage to pay’” – Kevin B. Jones, MD
“About 25% of operations are unnecessary, but administrators email doctors telling them to do more. This is not an insurance company putting pressure on doctors; this is not a government regulation. This is private hospitals pushing doctors to generate more money by doing more procedures. It goes on at America’s top hospitals. The Cleveland Clinic has said this system of paying doctors is so ethically immoral that is started paying its doctors a flat salary no matter how may operations they do” – Marty Makary, MD
Saturday’s front page of the Review section of The Wall Street Journal has an article called “How to Stop Hospitals from Killing Us”. The author is Marty Makary, author of one of the quotes above, who is a surgical oncologist at Johns Hopkins Hospital. The article contains excerpts from his book Unaccountable: What Hospitals Won’t Tell You and How Transparency Can Revolutionize Health Care (I have not read the book). This article scared me with comments like the following:
“Medical mistakes kill enough people each week to fill four jumbo jets”
“If medical errors were a disease, they would be the sixth leading cause of death in America – just behind accidents and ahead of Alzheimer’s”.
On describing his first day of residency: “On rounds that day, member of my resident team repeatedly referred to one well-known surgeon as ‘Dr. Hodad’. I hadn’t heard of a surgeon by that name. Finally I inquired. ‘Hodad’- it turned out was a nickname. A fellow student whispered: ‘It stands for Hands of Death and Destruction’”…”as I rotated through training I learned that many hospitals have a Dr. Hodad somewhere on staff (sometimes more than one)”.
He goes on to say that doctors don’t turn in other doctors in for bad medicine because of the ramifications to their careers and reputations. He goes on to give some of his ideas to fix these problems including more transparency concerning hospital success rates and culture, cameras in the operating room, open doctors’ notes that patients can revise and no more gag orders on patients who settle claims against doctors.
In summary, he thinks that there needs to be more transparency about how doctors and hospitals function. “To do no harm going forward, we must be able to learn from the harm we have already done”