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Joined: Mar 2009
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Joined: Mar 2009
Posts: 10
We know the feeling of incompetence! Our Dr. ordered a CT for thurs. Read it as clean, nothing there, and on friday, during an esophygeal dilation, he 'finds' something on my epiglottis and pulls a biopsy. It came back positive. Three months ago I had a CT on a tues. Dr. spotted two suspicious places, went in to excise (cut) a dollop (divot) of my tongue that came up clean as a bell. No cancer cells anywhere in it. So, who and when do you place your faith and trust in anymore? These guys are messing with a red headed wolverine (my wife) who takes NO prisoners!

In the course of this journey, one and a half years, she has managed to get one RN fired and a Radiation Dr. replaced. She doesn't do 'incompetence' very well. Man it is great to have her on my side! 10 of her in Viet Nam and we would have been out in 2 months. Winning!

If anyone has had a problem with the epiglottis, let me know what they did for it. Thanks Gnoled


I have found that attitude can make a world of difference.
gnoled #103122 09-07-2009 08:34 PM
Joined: May 2007
Posts: 666
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Joined: May 2007
Posts: 666
Gnoled,
I am a bit surprised that you call this incompetence.
First of all a CT scan is not all that good for soft tissue anyway. Second, did your Dr. (ENT?) really interpret the CT or was that read for him? In any case WHO cares what the CT/PET/MRI show what is important is what it is there tissue wise. It may just be the guy saved your life! A biopsy IS the way to go.
Also you have to wrap your mind around this: No MRI/PET/CT can tell you that you have no cancer, all you get it that there is not enough to be detected.... which may mean there is none and which is one reason why you get multiple scans. (And why you need to do biopsies... which they did in your case).
As far as PET/CT fusion scans are concerned, they are not as bad a charm makes them out to be. True they can be tricky and it is easy to create a false positive. They show metabolically active tissue, which may or may NOT be cancer. Also you need to have enough to generate a signal. If your cancer grows slowly and/or does not take up a lot of glucose you will not see it as abnormal tissue in the PET. This has little to do with the competence of the medical staff!

M






Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Markus #103138 09-08-2009 06:15 AM
Joined: Mar 2008
Posts: 3,082
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Patient Advocate (old timer, 2000 posts)

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As they say, when the map does not match the road or ground, it's not the road or ground that's wrong. PET/CTs sugar measurements simply do not differentiate between cancer cells and recovering cells intake of sugar. In prior posts, I recounted how livid I was with the standard radiologist's disclaimer that a high SUV means that cancer "cannot be ruled out" when that is true of every PET/CT scan. I pushed back hard and had the head of the Nuclear medicine department reread my scans as well as sit down with me an interpret the next one. As a result, he changed the report to state that the high SUV on my right side was probably not cancer (and the subsequent surgery proved him right).
The competence and experience of the radiologist who interprets the reports is an essential element of its validity. The better trained and more experienced radiologists are often promoted to management positions leaving the interpretations to the less skilled or residents.
Luckily my CCC radiology oconolgist has an open mind and after I refreshed his memory and walked him through the worthlessness of two out of the four PET/CT scans he had ordered , agreed that my 6 month checkup tomorrow will be a MRI instead of a PET/CT scan. My ENT surgeon needed no such wake up call as she had already shared her experiences at the massive disparity between PET scan reports and physiological reality she has seen in over thirty years of surgery.
Make no mistake, PET/CT scans are an invaluable aid in planning the coverage and radiation spray of TX. That's why only two out of my four PETscans had value. The extra information of metabolic activity (even when misleading)as well as finer resolution of the combined CT scanner than traditional ones allows the RO to keep the damage to normal tissues and organs down to a minimum. PET scans are excellent for some things, but their inability to distinguish normal cell recovery after TX from cancer places a limit on their diagnostic utility for remission that causes a lot of unnecessary worry as well as false hope to too many cancer patients, myself in the forefront. I do agree with Markus that the hardest thing is to accept that none of these tests can tell us that we do not have cancer and that a biopsy is the way to go. Well said Marcus

Last edited by Charm2017; 09-08-2009 06:21 AM. Reason: add agreement

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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