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Dodging the colon-cancer bullet

Posted by John Reed on

In March, 2016, I got a test that said my bout with prostate cancer was probably over. I had the cancer, got the prostate removed, and got a subsequent PSA test that was less than .1. Over 4.0 is the score that causes urologists to suspect cancer.

I have to get that test every three months for two years to make sure no cancer too small to detect survived, but so far so good. I wrote an article about it here to help save the lives of some of my readers. http://www.johntreed.com/blogs/john-t-reed-s-news-blog/115770435-the-dogs-are-never-wrong-or-how-to-avoid-an-avoidable-cause-of-death

‘Cancer won’t happen to me’

We all tend to think “cancer won’t happen to me.” Getting a cancer diagnosis from some German Shepherds in Italy cured me of thinking it won’t happen to me.

My surgeon mentioned in passing that he had a colonoscopy. Around that same time, my dermatologist said the same thing.  (I see him every three months for skin-cancer screening. Blonds may have more fun in general, but not with regard to skin cancer.)

Stool sample = colonoscopy?

I had been getting annual stool sample screening for colon cancer. I was told it was as good as a colonoscopy. Well, if that’s the case, why would anyone ever get a colonoscopy which is a royal pain to prepare for? So I asked my internist, “How come I’m doing stool samples, but my specialist doctors are getting colonoscopies?”

“I can schedule a colonoscopy for you if you want,” he said. “Do it,” I told him.

I had a colonoscopy once at age 29. Since then I had several sigmoidoscopies. Those only check the left third of your colon. The colon is an upside down U with the final third on your left, the initial third on your right and the horizontal portion in the middle connecting the tops of the two vertical thirds.

I thought they told me the left third was where most cancers are. More recent reading told me most are in the right third and second most are at the bottom of the left third. 

Carpet-shaped polyp—not good

So I got my colonoscopy. They found a small, mushroom-shaped polylp and clipped it out. Analysis said it was not cancerous. And they found another carpet-shaped polyp at the bottom of the right side far form the sigmoidoscopy limit. Analysis of that said it was not cancerous either. But carpet-shaped polyps are serious bad. They are likely to become cancer later.

Endoscopic mucosal resection

My local suburban hospital did not take it out because it requires a special, new procedure called endoscopic mucosal resection (EMR). That, in turn, requires special training and maybe additional colonoscopy equipment. They characterized it as pretty routine, but said I would have to go to their San Francisco hospital for that.

Oookay. The San Francisco doctor called me to discuss it. He said that five years ago, they would have taken out about 40% of my colon surgically to deal with this polyp.

Jesus H. Christ on a crutch! Indeed, I found an article on line where a guy who is a member of the same HMO as me—Kaiser Permanente—was told by Kaiser in 2007 that he had to have that surgery because of his carpet-shaped polyp. They did not even mention EMR to him, although they knew about it. 

http://www.sease.com/polyp/emr.html Mr. Sease is an electrical engineer. His article is very thorough, informative, and almost authoritative.

So when I said above that a non-cancerous carpet-shaped polyp was bad, I meant it. Before there was an EMR, they removed 40% of your colon if you had a non-cancerous carpet-shaped polyp.

But he freaked out about the surgery and kept postponing it. He kept researching it and discovered EMR. He had to talk Kaiser into paying for it. They initially resisted, but finally agreed. EMR was relatively rare at the time so he had to find a doctor trained and equipped for it.

He had the EMR done and was fine thereafter. No surgery needed. 

By the time I got my colonoscopy that found the carpet-shaped polyp, two San Francisco Kaiser doctors had made a specialty of EMRs. My gastorenterologist who did the EMR did advanced EMR fellowships at Stanford University Medical Center and the University of California at San Diego.

I had the EMR done on June 17th. The doctor said it went as planned. They do an analysis of it and tell me in a week or so if they found any cancer in it. The no-cancer biopsy done in the first colonoscopy was comforting, but not the final word. Looking for cancer in the entire polyp after it is removed is the final word.

My recommendations:

1. Get a colonoscopy when recommended which is about every five or ten years depending upon your age and health. The stool sample is okay for in between colonoscopies, but the stool sample detects bleeding. It does not detect dangerous polyps. The colonoscopies do that.

There are other tests that I will not discuss here because they are kind of in between the colonoscopy and the stool sample. As with almost all cancers, the earlier you detect the cancer, the more options you have for treatment and the greater the probability the treatments will succeed in curing the cancer completely.

2. When you get the colonoscopy, FOLLOW THE PREPARATION INSTRUCTIONS! You have to drink four liters of Gavilyte during a four hour period the day before the colonoscopy. Gavilyte cleans out your colon by causing diahrrea. By the end of the four liters what’s coming out of you into the toilet looks exactly like a glass of Gavilyte: a clear, fluorescent yellow liquid. It totally cleans you out which makes sense since the whole idea is to inspect the colon thoroughly or do endoscopic surgery in there.

Try to schedule the procedure for first thing in the morning. There is a strong temptation to cheat on the prep. Don’t even think about it. First, the doctor will know you cheated when he does the exam. Secondly, failure to do the full prep exactly as directed may result in the doctor not being able to see all the colon and therefore possibly missing polyps and cancer.

If you don’t prepare properly, you need to do it over, but it is an expensive procedure and your health insurance provider may balk at performing it again because you decided to cheat.

Not drinking all four liters of the Gavilyte in four hours can literally result in your death from colon cancer or a dangerous polyp covered up by feces in a colonoscopy. If you have to go through the damned Gavilyte prep, at least do it perfectly so you get maximum health benefit. Cheating on the prep is stupid at best and, at worst, suicidal.

 3. Research your diagnosis and procedure alternatives thoroughly. My prostate cancer was diagnosed by dogs trained to do that in Italy. I went there to give them the urine sample. No doctor told me about that. I learned about it through my own research. The article above by Mr. Sease reveals that Kaiser knew about EMR, but did not tell him about it in 2007. They did tell me about it immediately in 2016.

With my prostate cancer, I found that Kaiser answered my questions accurately, but did not volunteer important information. I knew it was important to get a highly trained, experienced surgeon to perform the complex prostatectomy. But if I had not known to ask for a highly trained, experienced surgeon, I would have gotten whichever local surgeon whose turn it was in my suburban branch of Kaiser.

Instead, I went to the Oakland branch and had the surgery performed by the only urological doctor in my HMO recommended in the San Francisco magazine article survey of the best doctors in Northern California. That survey asks other doctors whom would you go to for medical problem A and whom would you go to for medical problem B and so on. So it is the best doctors as ranked by their fellow doctors.

I cannot overemphasize the difference in screening tests, treatments, and results that I and others have experienced as a result of doing extraordinary research on our particular health situation. 

In Italy, I gave a urine sample to see if I had prostate cancer. Urologists previously wanted me to have a transrectal ultrasound biopsy—a really awful test that damages you. I had to wait six weeks after the prostate cancer biopsy before I could get the prostatectomy surgery because that area of my body had to first heal from the biopsy.

The difference between urinating in a cup and having the standard prostate biopsy is night and day, Venus and Mars. Furthermore, a man with an elevated PSA level would typically endure two or three such biopsies over two or three years. Multiple prostate biopsies can cause some of the side effects of the prostatectomy itself, including false-alarm, negative prostate biopsies that say you do not have cancer.

That’s why my finding the cancer-detecting dogs in a prostate disease annual report was so important. Obviously, no man should get a standard prostate biopsy until the dogs have said he has prostate cancer. And then all you get the biopsy for is not to see if you have the cancer—you do if the dogs say you do—but to ascertain the stage of the cancer. Not all prostate cancers warrant prostatectomy surgery. Unfortunately, the dogs are only available to a tiny percentage of the men on earth. That really angers me.

Similarly, the difference between having 40% of your colon removed by surgery and undergoing a painless, 45-minute, ambulatory surgery EMR procedure is like Mercury versus Pluto. In the latter case, my HMO had done the research and acquired the skilled doctors to execute it by the time I came along—albeit belatedly for Mr. Sease. So I expect there may still be some other health plans out there who routinely recommend the colon surgery without mentioning the EMR alternative and superiority.

EMR is not the indicated procedure for all dangerous polyps. There is a list of contraindications for the EMR that relate to details of the polyp.

Chills

One of the possible after effects of the EMR is chills. I had them. Because of possible dangerous complications of the procedure, like puncturing the colon, I was told to go straight to the emergency room. They took urine and blood samples and five x-rays. All indicated no problem.

Uh, okay, but I dd not imagine the chills, nor did I put them into the literature as possible after-effects of the procedure. An hour or two after I got back home from the emergency room, the chills went away. All I did was take some Tylenol, which may or may not have been related to the subsiding of the chills.

I was grateful for the chance to get the five x-rays because when they look at them, they look for all abnormalities findable by x-rays, not just EMR-related abnormalities, so those constitute unexpected screening tests.

I am also concerned about getting screened for lung cancer. I have no symptoms. I never smoked, but 20% of lung-cancer deaths are never-smokers. The standard screening test is low-dose CT scan (LDCT). I had one of those before the prostate surgery to make sure the cancer had not already spread. But that only covered my lower lungs.

The chest x-rays they gave me for the chills seemed to cover all the lung area and although x-rays are apparently not the ideal lung cancer screening method, they used to be the main method, so that’s something.

I understand that somewhere there are dogs that can diagnose lung cancer 100% accurately by smelling your breath. I need to find those because even the LDCT has a relatively low correct-positive rate. And the follow-up needle and surgical biopsies are no fun.

Benign

On 6/24/16, I received word that the pathology report said the carpet-

shaped polyp had been examined by a pathologist and that it was benign.


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