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Question on PET SCAN

Ronnie P
Posts: 2
Joined: Apr 2009

Hello all, I am a bit confused and allot nervous looking for some input.  I had colon cancer treated with a re-section in 2009.  Since then all colonoscopies have been clear. I also have what they call a nodule in my adrenal gland which we do a CAT scan on once a year to be safe. The CAT scan is a head neck and chest view.  In November the CAT scan revealed no issue with the adrenal gland however showed a nodule in my lung.  A 2nd scan 3 weeks ago showed that the lung nodule had more than doubled in size since November.  I went to a pulminary doc and he called the growth "very concerning" and said the nodule had "spirals".  I understood that to mean likely cancerous activity.  He ordered a PET scan to be sure but he even gave me the name of a surgeon. When he called me with the PET scan results he said the nodule was either benign or too small to detect a cancer and wanted me to wait 3 months and do another scan. Really???   And then he said....but, it appears that your colon cancer has returned.  He said it lit up in the lower colon in the PET scan.  I call the doc that did my original re-section, she ordered a blood test and it came back normal, She is not thinking cancer at this time and scheduled a colonoscopy for next week.  So much waiting between tests and wtg for docs to call me are making me physically ill.  my stress level is off the charts.  So I am wondering...are the blood tests dependable to rule out cancer?  If its not cancer that lit up on the PEt SCAN, what else could it be?  And really...wait 3 months to check the lung again after such rapid growth?  does that sound right?  What other kind of nodule grows?? HELP!

fighting_ big_c's picture
fighting_ big_c
Posts: 60
Joined: Mar 2013

I am sorry that you are experiencing this once again. If the other oncologist ordered a blood test, I think he/she might look into your CEA level. I know for sure for others that this is not their indicative marker, but it could for other people (just like my mom's). I hope they figure this out soon so necessary steps can be started asap. I will be praying for you.

Chelsea71
Posts: 1167
Joined: Sep 2012

Generally speaking the CEA (bloodtest) is a poor indicator. I'm sure this is a stressful time. Waiting is hard. The problem with pet scans is that they show every little thing. Often times people worry for what turns out to be no reason. The colonoscopy next week should give more insight. As for the lung issue, I'm not sure. Not sure what else besides cancer would grow at that speed. That's not to say that it couldn't be something else, I'm just not sure. That will be a long wait. It seems like you have been very responsible with your health. Going for regular scans and scopes. At least if all this does turn out to be cancer, you will have caught it early and it can be dealt with through surgery. Although, I'm sure this is not what you were hoping for as you approach your five year mark. Hopefully it will all turn out to be just a scare. You'll have a whole new lease on life! Sorry to make light of the situation. I know how hard it is to wait and worry. Best of luck to you.

Chelsea

Trubrit's picture
Trubrit
Posts: 1320
Joined: Jan 2013

I know its easy to say 'Don't stress'. I've been there, I am there, but I do know that stress is not good for you, some even say that it makes the cancer grow.

I would definitely try to lower the stress level, maybe with Yoga or meditative music. At least a couple of times a day. 

The waiting is so very hard. I don't know why they told you 3 months. Its hard getting a second opinion at this point. Did you bring it up with your surgeon? 

I wish you all the best, and pray that you can lower that stress level somehow. 

 

annalexandria's picture
annalexandria
Posts: 2181
Joined: Oct 2011

It seems to be effective for some, but not for others.  If it was useful in your case, it probably still is.  I think I would want more details on what they are seeing that makes them think the colon cancer is back.  From my experiences with the PET (I've had a lot, PET/CTs that combine the two), I would ask what the SUV was (the number that indicates rate of cellular activity), and how large the area was, as well as its location.  And did they do a CT while they were doing the PET?  If a CT was done, they should be able to use the PET as a guide as to where to for look for something that has actual physical substance (ie a tumor vs inflammation).  In my case, the CT regularly failed to pick up tumors that were able to be detected by the PET.  I also had tumors that grew on the outside of the colon, and those couldn't be picked up by a colonoscopy either.

But despite all that, I can see waiting 3 months, as long as you're not having any symptoms of problems like an obstruction.  It's horrible and stressful, but it's not uncommon.  My surgeon liked to wait to see if anything else popped up before going in to do a resection (I've had five surgeries), and there have been times when I knew I had a small tumor, but I had to give it a few more months to scan again, and then plan surgery.  And I have an unusually fast-growing tumor type, while most colon tumors are adenocarcinoma, which don't grow that fast.  It's scary, but I think you do have time to get a better sense of what's going on, which will help you to make the best decision of what to do next (if anything).

Sending strength your way~Ann Alexandria

peterz54's picture
peterz54
Posts: 228
Joined: Feb 2012

My wife went through a number of PET/CT scans all of which I looked at (including the reports) thoroughly and questioned.   There was a difference of opinion in the beginning and our oncologist went with the radiologist she was familiar with.  He turned out to be wrong, and it was on the issue of lung nodules.  He later missed the spread to the hip bone as well.  I can't stress how important it is for you to see the written report by the radiologist, to undertand what they are certain and  uncertain about, and for the radiologist to be experienced in cancers especially colon cancer.   I would question doing a colonoscopy with a possible tumor - this is something your oncologist should weigh in on.   If you are at a transition point, possible recurrance, get a second professional opinion on everything - Very important.   On PET scans - they do have limitations, and this is why an experienced radiologist who takes his or her time is vital.    Be sure you understand each doctor's reasoning - why they conclude what they conclude.  On more than one occcasion I have seen critical inoformation missed and this was by otherwise good physicians.  

YoVita's picture
YoVita
Posts: 539
Joined: Mar 2010

It is so kind of you to share your experience for the rest of us.  I'm having a scan next month and will keep your advice in mind. 

thxmiker's picture
thxmiker
Posts: 1201
Joined: Oct 2010

There are several blood markers.  If the doc did not test for H5IAA, Octriotides, CEA, etc.... then there is no way of knowing. My cancer showed H5IAA at first then CEA, and now CEA is worthless for me. My CEA is 2.0 and I know I have cancer. 

 

CT can show some obvious tumors. The PET is better and still not 100%.  These tests will give the Docs a good idea of what to expect but not necessarily the entire picture. 

 

Get a second opinion, and even a third opinion.  I would not get to concermed until you have a other opinions.

 

Best Always,  mike

 

PS Sending our thoughts and Prayers for a positive outcome!

YoVita's picture
YoVita
Posts: 539
Joined: Mar 2010

I was given the option to wait three months when what appeared to be a lung nodule showed up in a ctscan followed by a PET scan.  Blood tests are not helpful for me.  I decided not to wait.  So sorry about your stress.  Once you make a decision and plan, your stress level will probably come down a bit.  Best wishes to you.  Vita

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