Carcinoid Cancer

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Carcinoid Cancer

 

 

Carcinoid

 

 

 

 

The first thing to realize is that carcinoid is a real cancer.

  Don’t let anyone tell you that it is not.  It may or may not be the slow (typical as opposed to atypical) growing kind of carcinoid.   Though (with proper treatment) many people survive a long time with carcinoid cancer, some people die of this disease every year -- some very soon after their diagnosis.  You should immediately be seen by (or your local medical oncologist should be willing to consult with) one of the few carcinoid experts in the world. To do this, call The Carcinoid Cancer Foundation for a referral ...

 

Link to the Carcinoid Cancer Foundation

 

The Carcinoid Cancer Foundation can be reached at  888-722-3132 Tuesday through Thursday 9:00 AM to 5:00 PM Eastern Time. Monday and Friday are research days and someone may not always be available to answer your call. You may of course leave a message and someone will to get back to you as soon as possible.

 

 

Second, although carcinoid cancer is not really hard

to diagnose, many physicians are not trained to look and to test for carcinoid.    Indeed, one carcinoid expert was overheard to say, in regard to diagnosing it, “Think zebra, not horse -- zebra with purple stripes and pink polka dots.”

 

 

Third, many physicians are ill-prepared to properly treat

their carcinoid patients.   Many physicians, and probably most, have never seen a carcinoid patient.  Look for a physician who has treated many.  If you can’t find one locally, travel to one and then find a local physician who is not afraid to admit he needs help and is willing to work with one of the experts to determine how to treat you.

 

 

It took my physicians (many of them) over fifteen years to determine (other than the obvious) what was ailing me. By the time that I received a proper diagnosis (in 1992), I had over two-dozen abdominal tumors to deal with -- two of them very large ones.  My primary care physician at the time apologized to me over lunch one day and informed me that he thought he had seen one other patient with carcinoid in his 45 years of practice; but that it was time for him to retire, which he did.

 

 

The first few physicians that I consulted after obtaining my diagnosis advised me to, “Go home and get your affairs in order.”   They also each predicted that I had about two months to live.

 

Larry at 115 pounds
in August 1992
Gets an assist from
his son and granddaughter

I continued to search for a treating physician (an medical oncologist) until I found one that told me. “We’ll do a lot better than that!”   That was good enough for me, so I told him, “You’re my doctor!”

 I was later to learn that this oncologist had contacted one of the “carcinoid specialists” - Dr. Warner in New York - and continued to do so during my treatments.  Frankly, this is how I learned that there are physicians who specialize in carcinoid cancer.

 

 

In spite of my doctors’ and my best efforts, I continued

Carcinoid Syndrome

to lose weight and energy; plus I had all of the symptoms of full-blown carcinoid syndrome (see the Carcinoid Syndrome button on the left).  By early September of 1992, I had wasted away to 98 pounds from a normal 215.  I guess I was expected to die, so I spent a week in a local hospice before my situation began to improve.

 

 

I was carried into the hospice facility in early September of 1992, but I walked out of it on my own two feet seven days later.   At the time, I did not fully comprehend what hospice was. So, in a real sense, I guess I was too stupid to die.  I do remember asking one of my medical caregivers, “Does anyone ever walk out of here?”   She humored me by nodding, hesitatingly, in the affirmative.

 

 

Depress this “button” for a copy of this guide. -- You’ll have to have Adobe Acrobat Reader installed on your computer.

In 1997, my first wife (Betsy) and I wrote a hospice guide entitled “Cancer Patients and Hospice Care”.

The reasons for writing this document was twofold: (1) because of my own personal experience with hospice, and (2) because of the experiences of other members of my Washington DC-area cancer support group with emergency squads and ERs performing very painful rescue procedures on them in their last stages of life.

See my Notes on the Use of Hospice

 

For more of “My Noid Story” Click Here...

Larry

 

 

 

This page was last updated February 9 2015

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