Hi,
Well, we just returned from the RO and she ordered an MRI for Richard and his appointment is for Sat. She said that, at this point, the Pet could still show false positives and the MRI is a good scan to do at this point in time. I automatically thought that she would order the Pet and I'm wondering if the MRI will give us an "all clear." Has anyone else had this experience of having the MRI first? We've gotten excellent care, so I would hope money isn't the deciding factor in what follow up tests to do. Should we still demand a PET along with the MRI, or wait until the results of the MRI are read? The RO was also very pleased after seeing Richard and reiterated what the H&N surgeon said yesterday about the treatment working. I'd appreciate any feedback...Thanks, Geri

I never had a Pet post Tx, only MRI's and my first 2, one at 3 months and the 2nd at 6 months both produced an "area that can not be excluded". Of course both times I was told "not to worry, I'm sure it's not cancer." Yeah, I slept peacefully after hearing that!!! Finally the 3rd MRI at 9 months produced that words I longed for, ALL CLEAR!

In the UK Pet scans are not used routinely.Rob only had MRI and these gave all the information the doctors needed

I have had all the scans and more than once. False positives were the reason. But I do think all 3 showed the Drs different things they needed.

T. can't have a MRI due to a rod in his leg from an old compound fracture. PET is the only way after a CT. A lot of insurance co.'s won't pay for the PET--fortunately not in his case.

I have metal in both shoulders and it doesn't bother the scans. They are stainless and the magnetism ignores them.

Thank God I have excellent insurance because I work at a hospital so they don't hesitate to order any tests or treatments because of cost. We don't pay a cent for tests/treatments/hospital stays etc. John's Oncologist ordered a CT Scan with IV contrast of his neck and chest for the beginning of August. He will be 3 1/2 months out of treatment then. He said he doesn't like ordering PET scans for follow-up of this type of cancer because the radiation causes to many false/positives. John did have a PET scan of his entire body before treatments began. I hope your husband's results are great!

My doctor was pretty insistent on a PET scan a year from treatment ending and said I will have one more 2 years out.

Hi.
Well the results from Richard's MRI came back. The results look good with post treatment changes where the cancer was, but no finding for tumor. We were hoping for an"all clear" but the RO has ordered a PET scan. She told us that the report mentioned a "thickening" and she wants a definitive answer instead of waiting. Both the RO and the H&N surgeon are very reassuring that this is scar tissue and expect the Pet won't show any tumor. The node has shrunk up and the H&N surgeon said, that upon examination, everything looks good. Richard's appointment for the Pet will be on July 26th. So, we have to wait awhile longer for our answer.

Has anyone else had this experience? It seems that most people have a Pet post treatment. David, I know you had 2 MRI scans before the 3rd "all clear." Why didn't your doctors do other testing at the time?

After all the treatment, it's going to be several months for everything to return to it's "new normal." I guess I expected them to wait another couple of months before another test. The RO wants to have an answer for us now and she is pretty pro-active about getting things done. Well, that's our news. We are staying optimistic, but as you all know, waiting is so difficult.

We are planning to make a big move by spring and we are starting to get our house together. After almost 30yrs in one home we have accumulated soooo much stuff. From the big city to the country and closer to our daughter and grandgirlies. Richard would also like to complete one more job before we move. A little more money would come in handy. Sorry I'm starting to ramble, but going through this testing again brings back memories of the diagnosis and treatment. We've gotten back to doing all of our normal activities and routine, but this is a painful reminder uncertainty will always be hanging over our heads. However, we never lose tract of how very lucky we are and are grateful for every day on God's green earth. Any comments would be appreciated...Geri

Geri

all I can say is that none of the 4 PetScans/CT I have had in the last two years were "definitive" nor even helpful. In contrast, the MRI's identified the cancer clearly. So if the MRI did not show cancer, as it sounds, then all should be well. Don't worry if the Petscan does 'show" something as every one of mine was false. All they are good for in my opinion is to stage the radiation fields.
good luck on downsizing, We are planning a move this Spring also and sorting out stored "stuff" is turning out to be a Herculean task.

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

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

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