Pet scan controversy making me crazy.... please help

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Guest

Pet scan controversy making me crazy.... please help

Postby Guest » Sat May 26, 2007 9:16 am

Hi everyone,
These radiologists are making me crazy.
I haven't posted in a while. Here is my history:
I was dx 9/2005 with stage 3/4 cc. Did the resection, 6 months of Folfox with 5 treatments of Avastin. and finished in May 2006. Clear scans until now, (or so I thought). I was staged 3/4 because of a lymph node that showed up after surgery that had a PET uptake of 2.0

I won't bore you with my whole story with these darn scans. It is very complicated. The long and short of it is that even though I went to the same place for all my scans apparently two different Dr.s there have read them and they disagree. One says normal, one says I "MAY" have residual malignancy on this latest scan because that same lymph node has the same uptake of 2.0. (it is NOT enlarged, although it appears to have calcified) The kicker is that when this Dr looks back on my most recent scan (which was read by someone else, who said in his report it was all clear) she says she sees it there too.
:roll: What the hell?

Has anyone had something show up in a PET scan that has a mild uptake like this (2.0) that turned out to be cancer (or not?) My ocologist says we should just wait and keep scanning to look for change. I'm trying to just forget about this and just live my life. My husband thinks it is just a Radiologist covering her ass but I am not so sure. Thanks in advance Sue

sean
Posts: 293
Joined: Wed Mar 21, 2007 1:35 pm
Location: Vienna Virginia

Postby sean » Sat May 26, 2007 2:03 pm

Here's what I know about PETS. They only show sugar uptake which can be cancer, infection, or the body repair itself from some trauma (there's probably some more things). In other words there are normal reasons for part of your body to light up for a PET. I am definitely not an expert, so this may be wrong, but I think the only way imaging tests (CT, PET, MRI) can indicate that something is cancerous is to see change over time. In the case of a PET a cancer would show increased uptake over time and may grow. In the case of a CT you would see fast growth (or shrinkage if you are receiving any kind of therapy). I do know that CTs are preferred over PETs for monitoring for recurrence because of the false positives for cancer (although there are not really false positives since the test is to detect sugar uptake, not cancer). This doesn't mean that pets are useless - if something is detected on a CT it would make sense to do a PET to see if it is metabolizing sugar at a high rate. I actually requested a PET/CT combo for peace of mind when I was initially staged (IIA - T3 N0 Mx) to confirm no metastases but I am happy with CTs for monitoring.

Hope this was of some help & good luck.
42 - dx Jan 3 2007 stage IIA colon
9 FOLFOX4, 3 5-FU completed Sep 24 2007
Blockage symptoms, Negative Colonoscopy, Positive PET Oct 2009
2nd Resection Oct 2009 - Suspected Local Recurrence was Negative

Guest

Postby Guest » Sat May 26, 2007 2:14 pm

Thanks Sean,
I'm getting similar advice from people I know who have been in the "cancer game" longer than I. My Dr. alternates and does a plain CT and then the combo CT/PET every three months. I am probably over reacting. No one said it was a recurrent cancer only that it MIGHT be. Thanks for your reply. Sue

Joy
Posts: 460
Joined: Wed Apr 12, 2006 6:33 pm
Location: Ontario, Canada

Postby Joy » Sat May 26, 2007 2:53 pm

I've never had a PET scan. It is not readily available in Canada. I can get a PET scan done but it is not covered under any health plans and would cost me $2500 for the scan and then I would have to find a radiologist to give me the readings. Given this info I discussed it with my oncologist and was willing to pay because I was under the impression that this was the way to go. She told me to "save your money - you will just scare yourself to death - PET is not a reliable diagnostic tool". I have been given CAT scans and on one occasion there was a question of lymph node in my lungs which on subsequent CAT scan turned out to be nada - just old scar tissue. I also have 3 cysts on my liver which have shown stable on CAT scans - my surgeon took a look at my liver when he did my colon surgery and confirmed this diagnosis.

Guess what I'm trying to say is that CAT scans are the tool that is being used to monitor me. I will get a CAT every year. I wanted to get the CAT scan every 3 months but was told because I had radiation (rectal cancer) that my body had enough. :(

I get a CEA test every 3 months.

Stage III rectal cancer 2 nodes involved
LAR January 2006, Chemo/radiation completed October 2006

NED

sean
Posts: 293
Joined: Wed Mar 21, 2007 1:35 pm
Location: Vienna Virginia

Postby sean » Sat May 26, 2007 8:21 pm

If your CTs are without contrast I'd ask to get contrast. It will give you a jump on any recurrence. I have some small unidentifiable growths in my liver that only show up w/ contrast since a combined PET/CT very soon after was not able to see them (good news that the PET didn't pick them up, but they are also still very small). That was in December/January. My next CT w/contrast is in 2 weeks so I'll know if they have stayed the same (good news - likely benign cysts), or have shrunk or grown w/chemo (bad news since they'd likely be cancer and I'd rather just stay stage IIA for a good long while!). If I was getting CTs without contrast they'd never have been seen and if cancerous it would only delay the diagnosis.
42 - dx Jan 3 2007 stage IIA colon
9 FOLFOX4, 3 5-FU completed Sep 24 2007
Blockage symptoms, Negative Colonoscopy, Positive PET Oct 2009
2nd Resection Oct 2009 - Suspected Local Recurrence was Negative

Hawaii
Posts: 389
Joined: Sun Apr 08, 2007 1:28 am
Location: Calif.

Postby Hawaii » Sun May 27, 2007 2:43 am

I too had one lymph node show up on PET/CT scan after surgery. Dr. ordered a "fine needle aspiration" biopsy with CT and it showed cancer there. So now they are going to remove that next week, before starting chemo. Maybe you should request a biopsy also, to be sure.
Good luck.

Guest

Postby Guest » Mon May 28, 2007 7:53 am

Thanks to everyone. I am looking into a biopsy but it is not in an area that is without substantial risk (the aorta). I wish I could do that, but I am not sure it is possible.
If this had showed up with normal cancer uptake I would be going forward in a way more aggressive way. It is the SUV of 2.0 that has me stumped. One radiaologist said it represented normal biological activity in the ureter while the next one said it represented a "possible" malignancy in the lymph node. These are people who are looking at THE SAME SCAN. It has remained unchanged in size throughout the entire 18 months since I was first diagnosed.

To those of you who responded with concerns about the liver cysts. I was told that is pretty common. I think I was quoted about 50% of people have them.

I guess in the final analysis for all of us "time will tell" is our mantra. Thank you very much for responding to my post.


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