Has anyone had exploratory laproscopy for high CEA but negative PET scans?
Comments
-
exploratory
I did not have laparoscopic but open abdominal exploratory surgery, and it wasn't for high CEA that did not show up on PET scan but for spots that showed up on an MRI that did not show up on a CT or PET scan and also had low CEA (2.0).
Thank god I went ahead and had the surgery even though nothing was showing up where it classically is supposed to show up. I had three mets to the liver split between the lobes and one dangerously close to a major blood vessel. I had a liver wedge resection. So glad they have been cut out of me. Hope chemo can kill anything else that is floating around and not showing up anywhere.
No one wants surgery when you don't know 100 percent if you need it, but the flip side is if there is really something there and you wait till things are big enough to show up on the CT scan (or the PET or in a CEA, whatever applies in anyone's particular case), you might not have as big a chance for a positive surgical outcome.
Just my opinion and that opinion is just based on my recent experience.0 -
exploratory surgery/going for a HIPEC consultk1 said:exploratory
I did not have laparoscopic but open abdominal exploratory surgery, and it wasn't for high CEA that did not show up on PET scan but for spots that showed up on an MRI that did not show up on a CT or PET scan and also had low CEA (2.0).
Thank god I went ahead and had the surgery even though nothing was showing up where it classically is supposed to show up. I had three mets to the liver split between the lobes and one dangerously close to a major blood vessel. I had a liver wedge resection. So glad they have been cut out of me. Hope chemo can kill anything else that is floating around and not showing up anywhere.
No one wants surgery when you don't know 100 percent if you need it, but the flip side is if there is really something there and you wait till things are big enough to show up on the CT scan (or the PET or in a CEA, whatever applies in anyone's particular case), you might not have as big a chance for a positive surgical outcome.
Just my opinion and that opinion is just based on my recent experience.
Thank you for responding k1. I just joined the network and this was my first post. First of all I am so glad your mets were found and removed. How are you now? Can I ask why they did an MRI? How was the healing process after the 2nd surgery? Are you still on chemo now?
I have only had PET scans (every 3 months) since my diagnosis. All my hot spots resolved, but since my CEA is climbing, they think I may have intraparitoneal activity. They are sending me to another doctor out of state for a second opinion. I wonder why I haven't had a CAT scan or MRI. I'm thinking they need to look inside.
I'm not sure how sensitive the pet scans are for small mets. Now that I have an appointment with this doctor he has ordered a high contrast CT scan. My doctor thinks I am a candidate for HIPEC (hyperthermic intraparitoneal chemotherapy). Does anyone know who and where the best surgeons and facilities are for this procedure? I am in Florida, and there are no doctors in this state that do this.
If you or anyone has any advise for me I would be grateful.
Thank you.0 -
MRIHart1212 said:exploratory surgery/going for a HIPEC consult
Thank you for responding k1. I just joined the network and this was my first post. First of all I am so glad your mets were found and removed. How are you now? Can I ask why they did an MRI? How was the healing process after the 2nd surgery? Are you still on chemo now?
I have only had PET scans (every 3 months) since my diagnosis. All my hot spots resolved, but since my CEA is climbing, they think I may have intraparitoneal activity. They are sending me to another doctor out of state for a second opinion. I wonder why I haven't had a CAT scan or MRI. I'm thinking they need to look inside.
I'm not sure how sensitive the pet scans are for small mets. Now that I have an appointment with this doctor he has ordered a high contrast CT scan. My doctor thinks I am a candidate for HIPEC (hyperthermic intraparitoneal chemotherapy). Does anyone know who and where the best surgeons and facilities are for this procedure? I am in Florida, and there are no doctors in this state that do this.
If you or anyone has any advise for me I would be grateful.
Thank you.
Hi Hart,
Why they did an MRI .... because I begged for it in lieu of the CT scan to reduce my radiation exposure. At my oncology clinic the standard protocoal after colon surgery is a high contrast CT scan every three or six months until you make three years without a recurrence.
I was getting ready to have my fifth CT scan (I am on the every three month schedule because my insurance will pay for it that frequently) and I told my oncologist I wanted a contrast MRI instead to save myself some radiation. He argued with me, but in the end they really cannot force you to do anything you don't want or feel comfortable doing, so I got my MRI in lieu of getting another three-month CT scan.
When the MRI showed small lesions on my liver, he immediately sent me for a CT scan, then a PET scan, both of which showed nothing. I was scheduled for another MRI 8 weeks later to see if these lesions were a fluke. They were not. They were on the second MRI as well and showed growth within 8 weeks. My oncologist sent me to a surgical oncologist for a consulation, who said I could have exploratory surgery on my liver or wait a few months until they showed up on a contrast CT scan. I said I wanted the expoloratory surgery.
Just before the surgery they sent me for another contrast CT scan...it still failed to identify any lesions seen on the MRI.
I think that very early stage mets just don't always show up on everyone in a CT or PET and feel lucky I got my three mets removed before they were not removable.
How am I doing now? Liver resection was a more major surgery than colon resection in my case, and the acute period for healing was prolonged. I had the liver resection in June and they said 8-12 weeks before starting chemo so I would be healed up. This is week 9 and I am getting my port tomorrow and start chemo on Thursday -- Folfox 5 regimen.
If your doctor is recommending a contrast CT scan then get it as soon as possible since you both agree on that. If it fails to show anything, you could ask if you can get a contrast MRI. Expect to be told that the high contrast CT scan is standard for catching mets, and be prepared to be your own advocate for an MRI.
Good luck!
K10 -
every biomarker or test has its day
Papers show that detection gets statistical as to which test or biomarker rings the bell first. If we had a climbing CEA over 20, I would look for expanded imaging schedule (high resolution scans, MRI, PET/CT) and other biomarker options. We use MCV (for 5FU type chemo), CEA, CA19-9, ESR (inflammation). Some local CTs are 8 and 16 slice machines but 128 and 256 slice machine are available too for lower radiation and more resolution.
Re the MRI confirmation: Additional advanced ultrasound imaging has more limitations (e.g. gas bubbles), cheap, might be useful in some confirmation cases with no contrast/radiation.
K1 what kind of MRI machines were used? Met detail, MRI model(s) or a magnet strength (e.g. open/closed magnet, 1.5 tesla or 3 tesla) would help and be appreciated. I've been thinking about my wife getting an MRI instead of the CT, too. Her scan is due in 2-3 weeks. Thanks.0 -
Thank you and good luckk1 said:MRI
Hi Hart,
Why they did an MRI .... because I begged for it in lieu of the CT scan to reduce my radiation exposure. At my oncology clinic the standard protocoal after colon surgery is a high contrast CT scan every three or six months until you make three years without a recurrence.
I was getting ready to have my fifth CT scan (I am on the every three month schedule because my insurance will pay for it that frequently) and I told my oncologist I wanted a contrast MRI instead to save myself some radiation. He argued with me, but in the end they really cannot force you to do anything you don't want or feel comfortable doing, so I got my MRI in lieu of getting another three-month CT scan.
When the MRI showed small lesions on my liver, he immediately sent me for a CT scan, then a PET scan, both of which showed nothing. I was scheduled for another MRI 8 weeks later to see if these lesions were a fluke. They were not. They were on the second MRI as well and showed growth within 8 weeks. My oncologist sent me to a surgical oncologist for a consulation, who said I could have exploratory surgery on my liver or wait a few months until they showed up on a contrast CT scan. I said I wanted the expoloratory surgery.
Just before the surgery they sent me for another contrast CT scan...it still failed to identify any lesions seen on the MRI.
I think that very early stage mets just don't always show up on everyone in a CT or PET and feel lucky I got my three mets removed before they were not removable.
How am I doing now? Liver resection was a more major surgery than colon resection in my case, and the acute period for healing was prolonged. I had the liver resection in June and they said 8-12 weeks before starting chemo so I would be healed up. This is week 9 and I am getting my port tomorrow and start chemo on Thursday -- Folfox 5 regimen.
If your doctor is recommending a contrast CT scan then get it as soon as possible since you both agree on that. If it fails to show anything, you could ask if you can get a contrast MRI. Expect to be told that the high contrast CT scan is standard for catching mets, and be prepared to be your own advocate for an MRI.
Good luck!
K1
My oncologist was ordering PET scans every 3 months and blood work every 3 weeks. I'm on my 7th. They did a CT also, but not with contrast...just to use for location. I haven't ever had an MRI of my abdomen.
I am scheduled for a high contrast CT scan in September, right before I meet with the surgical oncologist for the HIPEC consult. I'll let you know what happens. I never had my port removed so I guess my oncologist saw the writing on the wall long before I did. I am going to have to speak up more and quit denying that my cancer is back. I guess if the CT scan comes back negative they will do an MRI...if they don't then, I will insist.
Best wishes to you as you go through the Folfox 5...I've been there. Have you? You can do it! Find something you can drink and don't let yourself get dehydrated. I was able to drink purple Gatorade warm and warm white tea. I would go and get a bag of fluids when I had the pump removed and that seemed to help. I think staying hydrated was the key for me to make it through all 12 of my treatments.
Good luck, and thank you!
Hart0 -
I guess I'm due for another imaging testtanstaafl said:every biomarker or test has its day
Papers show that detection gets statistical as to which test or biomarker rings the bell first. If we had a climbing CEA over 20, I would look for expanded imaging schedule (high resolution scans, MRI, PET/CT) and other biomarker options. We use MCV (for 5FU type chemo), CEA, CA19-9, ESR (inflammation). Some local CTs are 8 and 16 slice machines but 128 and 256 slice machine are available too for lower radiation and more resolution.
Re the MRI confirmation: Additional advanced ultrasound imaging has more limitations (e.g. gas bubbles), cheap, might be useful in some confirmation cases with no contrast/radiation.
K1 what kind of MRI machines were used? Met detail, MRI model(s) or a magnet strength (e.g. open/closed magnet, 1.5 tesla or 3 tesla) would help and be appreciated. I've been thinking about my wife getting an MRI instead of the CT, too. Her scan is due in 2-3 weeks. Thanks.
I would never have thought to ask the magnet strength of the MRI, or the number of slices viewed, but I should know that the machine model and make could make a huge difference. I will ask more questions and bring a pen and paper next time. It is making sense that the 2nd opinion surgical oncologist wants me to use the machine at his clinic in leu of having the scan done where I am now and sent up. It also explains why they like me to go to the same machine each time so they can compare "apples to apples". You have me wondering what that machine is, how old it is etc...It may be 20 years old for all I know. It is owned by the oncology group not a radiology group. Those things are huge investments, and are shared by all the doctors. They are also huge revenue generators for the practice. Getting a new scanner every time new technology comes out is not really going to happen that frequently.
Thank you, you really got me thinking. Getting a different type of scan, or using a different type of machine is the answer, and probably is going to show the Mets that we know are lurking.
I have been getting PET/CT scans every 3 months with no contrast. I have only had MRI's of my brain and breast, never my abdomen.
I think I am on the right track now. I'll be getting a high contrast CT scan in September, and if that is negative, I will insist on an MRI before they do an exploratory.
Thank you, for replying. Best wishes to you and your wife. I think an MRI is a great plan. I have had 7 of the same machine negative PET scans with this climbing CEA...it is a horrible waiting game. I hope all her scans are clear.
Take care,
Hart0 -
Another thought.......Hart1212 said:I guess I'm due for another imaging test
I would never have thought to ask the magnet strength of the MRI, or the number of slices viewed, but I should know that the machine model and make could make a huge difference. I will ask more questions and bring a pen and paper next time. It is making sense that the 2nd opinion surgical oncologist wants me to use the machine at his clinic in leu of having the scan done where I am now and sent up. It also explains why they like me to go to the same machine each time so they can compare "apples to apples". You have me wondering what that machine is, how old it is etc...It may be 20 years old for all I know. It is owned by the oncology group not a radiology group. Those things are huge investments, and are shared by all the doctors. They are also huge revenue generators for the practice. Getting a new scanner every time new technology comes out is not really going to happen that frequently.
Thank you, you really got me thinking. Getting a different type of scan, or using a different type of machine is the answer, and probably is going to show the Mets that we know are lurking.
I have been getting PET/CT scans every 3 months with no contrast. I have only had MRI's of my brain and breast, never my abdomen.
I think I am on the right track now. I'll be getting a high contrast CT scan in September, and if that is negative, I will insist on an MRI before they do an exploratory.
Thank you, for replying. Best wishes to you and your wife. I think an MRI is a great plan. I have had 7 of the same machine negative PET scans with this climbing CEA...it is a horrible waiting game. I hope all her scans are clear.
Take care,
Hart
I just had a PET done and it showed a spot that turned out to be scar tissue on a previous wedge resection of the lung...Upon an initial bronchioscope while running the scope down the windpipe they found a small nodule that he seemed to think was the reasoning that my CEA was elevating. He did remove and cauterize it before finishing his scope and I am to return to Vandy next Wednesday to see what my next move will be from my Onc...I do however have a slight enhanced spot on my liver that they are concerned with...That could also be the reason for the rise in CEA......All my liver and kidney enzymes, bloodwork etc all came back normal. CEA however was not back yet when he spoke with me.......But , the PET did not show the nodule, it was simply found on a trip down my throat...but in hopes that it was small enough to take action with.....and rid of........buzz0 -
thanksHart1212 said:Thank you and good luck
My oncologist was ordering PET scans every 3 months and blood work every 3 weeks. I'm on my 7th. They did a CT also, but not with contrast...just to use for location. I haven't ever had an MRI of my abdomen.
I am scheduled for a high contrast CT scan in September, right before I meet with the surgical oncologist for the HIPEC consult. I'll let you know what happens. I never had my port removed so I guess my oncologist saw the writing on the wall long before I did. I am going to have to speak up more and quit denying that my cancer is back. I guess if the CT scan comes back negative they will do an MRI...if they don't then, I will insist.
Best wishes to you as you go through the Folfox 5...I've been there. Have you? You can do it! Find something you can drink and don't let yourself get dehydrated. I was able to drink purple Gatorade warm and warm white tea. I would go and get a bag of fluids when I had the pump removed and that seemed to help. I think staying hydrated was the key for me to make it through all 12 of my treatments.
Good luck, and thank you!
Hart
Thanks for the advice on hydration. I do not know what I will be able to tolerate warm but tea sounds like a good one to try. I was supposed to have had my first chemo on Thursday but was denied due to drug shortages. They are supposed to reschedule me this week for Xelox.
K10 -
I will try to find out whentanstaafl said:every biomarker or test has its day
Papers show that detection gets statistical as to which test or biomarker rings the bell first. If we had a climbing CEA over 20, I would look for expanded imaging schedule (high resolution scans, MRI, PET/CT) and other biomarker options. We use MCV (for 5FU type chemo), CEA, CA19-9, ESR (inflammation). Some local CTs are 8 and 16 slice machines but 128 and 256 slice machine are available too for lower radiation and more resolution.
Re the MRI confirmation: Additional advanced ultrasound imaging has more limitations (e.g. gas bubbles), cheap, might be useful in some confirmation cases with no contrast/radiation.
K1 what kind of MRI machines were used? Met detail, MRI model(s) or a magnet strength (e.g. open/closed magnet, 1.5 tesla or 3 tesla) would help and be appreciated. I've been thinking about my wife getting an MRI instead of the CT, too. Her scan is due in 2-3 weeks. Thanks.
I will try to find out when I go back, but my hospital had a brand new machine for CT scan that is much faster and much lower radiation than the one at the cancer center and I was sent to the new one.0 -
exploratory lap
This is not exactly the same as your situation - but my daughter was 16 months out from her initial surgery and her regular quarterly CT showed a 2 cm mass in her abdomen. A PET scan showed the same thing a week later. Her CEA remained normal. Both her onc and her surgeon were sure it was not a recurrence, but they did a needle biopsy and it came back as cancer. So they did a surgery to remove it, thinking it would just be a simple operation. Turns out she has peritoneal mets, all over her abdomen. They were all small, so I guess they wouldn't show up on a CT or PET. Luckily the one "grew' to 2 cm and showed up. One was on the surface of her small bowel, so they had to remove a little chunk of that. Now she's going to see if she's a candidate for HIPEC. The docs don't know how long these mets have been in there and she could either just do chemo and then if one grew and caused a problem, have surgery or she can do HIPEC with the goal of getting rid of it once and for all.
But we think it's kind of fortunate that this 2 cm mass showed up - it led to the exploratory surgery way sooner than her getting a small bowel obstruction!0 -
Tanstaafl, what is MCV (fortanstaafl said:every biomarker or test has its day
Papers show that detection gets statistical as to which test or biomarker rings the bell first. If we had a climbing CEA over 20, I would look for expanded imaging schedule (high resolution scans, MRI, PET/CT) and other biomarker options. We use MCV (for 5FU type chemo), CEA, CA19-9, ESR (inflammation). Some local CTs are 8 and 16 slice machines but 128 and 256 slice machine are available too for lower radiation and more resolution.
Re the MRI confirmation: Additional advanced ultrasound imaging has more limitations (e.g. gas bubbles), cheap, might be useful in some confirmation cases with no contrast/radiation.
K1 what kind of MRI machines were used? Met detail, MRI model(s) or a magnet strength (e.g. open/closed magnet, 1.5 tesla or 3 tesla) would help and be appreciated. I've been thinking about my wife getting an MRI instead of the CT, too. Her scan is due in 2-3 weeks. Thanks.
Tanstaafl, what is MCV (for 5FU type chemo). Never heard of this before???0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.2K Cancer specific
- 2.8K Anal Cancer
- 440 Bladder Cancer
- 306 Bone Cancers
- 1.6K Brain Cancer
- 28.4K Breast Cancer
- 391 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 12.9K Head and Neck Cancer
- 6.3K Kidney Cancer
- 666 Leukemia
- 789 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 235 Multiple Myeloma
- 7.1K Ovarian Cancer
- 53 Pancreatic Cancer
- 486 Peritoneal Cancer
- 5.3K Prostate Cancer
- 1.2K Rare and Other Cancers
- 532 Sarcoma
- 718 Skin Cancer
- 647 Stomach Cancer
- 190 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards