Avatar universal

A history of colon cancer; and a few medical mistakes.

Worldwide studies of tens of thousands of people have demonstrated, as is true of me, that increased CEA can be associated with diabetes or other metabolic syndrome.

But it's not always, so I am not saying that everyone with diabetes will have a false positive CEA. The reality is that, if one's CEA is elevated, I believe one needs to be checked for cancer in general, and colon cancer in particular.

After I found my high CEA (which, in me, has ALWAYS been associated with liver metastases), my first stop was to the PET scanner. I think the PET scan is far and away the best test for cancer in the body. I'd absolutely have been dead 15 to 18 or so years ago had the PET scan not become available for general good use.

My back story, if you're interested is this:  It was 1997 that I first found colon cancer via colonoscopy. In 2000-2001, I was visiting my sister in DC. Her good friend is a radiologist there and it was time for me to get a CT. PET scanners were pretty unusual in those days.

The radiologist assured me that my CT was perfect and that he read it carefully. By LUCK and by G-d, I had known about PET scans from my perusal of the generally available literature. By LUCK and by G-d, the radiologist had, just a few weeks prior to my being in DC, installed a PET scanner and he had just "hired" a fella from a nearby med school. That fella was an older, retired MD, with some experience reading PET scans.

Lo, my sister's friend (the radiologist) kept telling me that a PET was not necessary, that my CT was perfect. It's not that I didn't believe him, but I prevailed and he did the PET. I just had a feeling....

And the old fella saw my first liver metastasis. Coordinating with the CT, they both localized it to my liver. OMG, what a scary time. I truly thought I was as good as dead.

On return to Miami, I had an amazing surgeon remove that lobe of the liver. I was sure I was not going to survive the surgery.  In antediluvian days (when I was in school), liver surgeries, at times, just exsanguinated. I had one foot in the grave. My recovery was quick and uneventul. Lucky I had lost a bunch of weight prior to that surgery...and I had started on a walking campaign about a year and a half prior to the surgery.  

Anyway, second liver metastasis was in 2006. My oncologist (at that time) urged me to stop doing the PET scans every four to six months as I had been doing. He said I just didn't need them so often. Believe it or not, I got one a few months after that visit, and, BOOM, there was the second liver metastasis.

The second surgery by my amazing surgeon went smoothly, but it hurt a lot more and took many months to recover. I did have heavy-duty chemo in the two or three months prior to the second liver surgery.

In 2008, my CEA went up. I wasn't yet a diabetic (as far as I knew), and my PET showed another liver metastasis.

So my third liver met was in 2008. The surgeon didn't want to operate again. He sent me for a radio-frequency ablation. At the time, I could not find anyone in Miami whom I felt was qualified to do the RFA.

So I flew to Hopkins. Believe it or not the Hopkins' doc MISSED the tumor twice on different visits. At the third visit, I spoke up. I told the Hopkins' doc that he knew he missed it twice already. I asked him to please put me under anesthesia and find the cancer. And when you've found it and are sure you're in the middle of it, then blast it. And, I added, when you think you've blasted it enough, then please, please, please blast it another 50%.

I explained to Hopkins' doc that that day was my last bite of the apple, and that I assumed to do what I asked was out of his protocol. But I told him I'd sign a waiver...and that I'd much prefer to die on his operating table than be eaten up slowly by the cancer.

That fine doctor told me he needed to think about it; talk to some colleagues; then came back almost an hour later and said he would do as I asked.

My recovery from this enormous ablation was painful and slow, but I mostly recovered. So I stayed without cancer (as far as I knew) from 2009 till July/August, 2019.

Then the liver metastasis appeared a fourth time. I had what's called "irreversible electroporation" at the University of Miami Sylvester Institute on August 7, 2019. As of last look on PET on December 4, 2019, the cancer seemed to be gone, thank the Lord.

As a side note, my CEA was perfect with this last met.

Certainly four months is too soon to even start to think that cancer won't come again. I know the game. I know doctors make plenty of mistakes.

It took me hours of poring over the world literature (on line) to find the two studies that demonstrated that.

Let me mention another doctor's mistake, actually two mistakes. One by the doctor who "read" my carotid ultrasound about a year ago; and the other by me failing to carefully read that report. That report showed my left internal carotid artery was COMPLETELY blocked, and I just happened to come across the report while I was cleaning up some stuff. So the test was a year old already.

Quickly I scheduled a repeat test at a different facility. The repeat showed NO blockage and that my blood was flowing perfectly. Sure, some arteriosclerosis at age 78, but no blockage. WOW!!  Like a ton of bricks off my shoulders.

As it true of most folks, I'm sure, I pray to G-d to take me when he's ready, but please take me painlessly and during my sleep.

So I started, and sorry I got a bit long-winded. Be well.
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Avatar universal
WoW!  That's some story. It highlights how crucial it is that you have to be your own advocate.  Read up on the latest treatments and make use of them.  Also to listen to your body and your intuition.   The medics are treating many patients each day and mistakes can be made or things accidentally overlooked.  Here in the UK we get free healthcare so you are in the hands of the medics as to the procedures and tests.  If you cannot persuade them on a particular test/procedure then you have to revert to private healthcare.  Yes it will cost but if it means living longer then so be it.  Wishing you the very best and thanks again for sharing.  It has strengthened my resolve.
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