Sunday, September 23, 2012

Surgery?

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”

I agree.


3 comments:

  1. Dear Beth, Though I certainly appreciate your concerns as stated in your blog about surgeons, medical mistakes, etc., please know that the first and best way of managing carcinoid and neuroendocrine tumors is to surgically remove any and all disease the doctor can find. It has now been proven that an aggressive approach to this disease extends survival time by two to three times over the old "watch and wait" methodology. That said, you would be advised to choose your surgeon carefully. There are nationally known experts in carcinoid and NET cancers and you should consult with them. A surgeon who is a specialist in this cancer can remove the tumors and give you a chance at a long, high quality of life.

    I was diagnosed with Stage 4 Carcinoid in 2006 and had surgery during which my doctor found and removed many, many tumors and lesions. By the way, only one of the many he removed showed on any of the many imaging tests that were done in advance of the surgery. They are doing wonderful things at the NET Clinic in New Orleans (see www.carcinoid.org for a list of carcinoid specialists and other carcinoid friendly doctors!) Understand that while there are many competent and talented surgeons in our country, the ones who specialize in carcinoid and NETs are few and far between. However, when they specialize they see far more carcinoid/NETs patients daily than other doctors and have developed methods of surgery, anesthesia etc. that will help you avoid many of the drawbacks of surgery and the possibility of carcinoid crisis during surgery. (These little critters do not like to be disturbed!) Before making your decision, I would consult with at least two of the carcinoid specialists...many will gladly review your records from "afar" and give you their opinion. All doctors have to make money to support their practice, but the NET specialists in this country have devoted their lives and talents to helping carcinoid/NET patients live longer and more successfully. With the tumor burden I had when diagnosed, the old school prognosis was limited to very few living after 5 years. I am now in my seventh year after surgery and still have no evidence of disease on testing and scans. Yes, there is recovery time to consider, but from where I sit, getting the disease out gives your body a chance to heal and support you and your lifestyle for many years to come. To avoid the problems you have cited, I firmly believe that the choice of a uniquely trained and talented surgeon would avoid those pitfalls. Check out our website too: www.heartlandcarcinoids.org There is lots of good information there!

    Best of luck in your carcinoid journey...
    Dianna Boomershine
    Heartland Carcinoid/NETs Support Group
    www.heartlandcarcinoids.org
    heartland_carcinoids@yahoo.com

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  2. Hi Dianna,

    Thanks for your nice note. I'm glad to hear that your surgery went well and that you are doing fine. I plan to continue to review my options for the time being. I am stil asymtomatic. I'll keep you posted since I still face treatment decisions. Thanks again for writing.

    Beth

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  3. I have carcinoid. I do think some surgeons are promoting surgery in an unseemly and self-serving way, and I understand your wariness. I did the surgery, and when I did it, my highly regarded surgeon urged me to get it, while every other doctor was saying no at that time. I could not convince the doctors to come to a consensus. Because of the great personal respect I have to this surgeon, I had the surgery, and do feel that it was helpful for me. The surgery was not nearly so difficult as other radiation procedures I've had since then. In the end, for me, it was not all that difficult a decision or procedure, and it has helped me.

    This is an extraordinarily difficult disease, and whether doctors admit it or not, there are a great many unpredictable and unknown aspects to each person. My surgeon said that each person actually has a different disease, and comparisons are not valid.

    About the decision about surgery. This is a lopsided kind of decision. You can decide "no I will not have the surgery." But then the next day the surgery is still an option. Then if one day you do decide to have the surgery, you will never be able to choose the non-surgery path after that. For this reason, many people who are urged by doctors to get treatment eventually do.

    Finally, on being asymptomatic. To me you sound a little too sure of that. It's not the blood markers, which are quite rough and poor for our disease. But how would you know for sure that you aren't under the influence of this disease?

    It's your body and your decision and I wish you the best with this.

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