Update CEA & CT Scan Results - Advice/Feedback Needed

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FindTheBestHelp
Posts: 92
Joined: Mon Jul 14, 2014 12:13 am

Update CEA & CT Scan Results - Advice/Feedback Needed

Postby FindTheBestHelp » Tue Apr 24, 2018 2:12 pm

Hi Everyone,

Your feedback/advice would be greatly appreciated. Here is a brief history:

Mid-June 2014 - Diagnosed with "Stage 3" colon cancer, met with surgeon for pre-op advisement which was that a total colectomy was needed/best. The following week, a surgery was scheduled and the tumor as as many lymph nodes and cancer was removed as possible. Post surgery only small intestine and rectum remained, and so the small intestine was attached to rectum and Dr. said it was air tight. Following surgery, a hospital stay was needed to recuperate and to regain
bowel functions and walking ability. After that, approximately 2.5-3 weeks of rest away from stress and barking/meowing pets was taken. Then a 6-month chemo therapy program was started, with 5-FU and leucovorin. Towards the end of the chemo therapy, it was determined that the treatment was taking its toll and the oncologist eased back on the leucovorin. After chemotherapy ended in early January 2015 (3.25 years ago), quarterly blood tests, bi-annual CT scans,
and annual colonoscopies were performed for 2 years. When the 3 year mark came (the time starting from end of chemotherapy), the oncologist said that 85% of the chance of recurrence usually occurs during the first 3 years and she was happy with how things were going, so blood tests could go from quarterly to bi-annually and CT scans could go from bi-annually to annually. The surgeon said the colonoscopies looked clear for the past 3 years and so colonoscopies could
be every 2 years instead of yearly. The CEA results were good and nothing was noteworthy about them from 10/2015 thru 10/2016 or 1/2017. CT scans looked clear and so did colonoscopies. Then, there was an uptick in CEA noticed that could have started either 1/2017 or 4/2017, when CEA rose to 2.1 and then 3.0. For 6 quarters since then, it's been only going up, by higher amounts than just one-tenth, two-tenths, or three-tenths of a whole point.. more like nearly a whole point
or sometimes a whole point. This was obviously concerning, as previously the CEA would bounce up and down by fractions of a point, now for 6 quarters only going up. The only exception was when the oncologist ordered 2 CT scans a month apart from 3/18/2018 to 4/18/2018, when the CEA stayed at 5.5, but the following month on 4/18/2018, it turned to 6.1. The oncologist had a threshold of anything above 6.0 requiring ordering an early scan, so a CT scan was ordered and
performed last Saturday (4/21/18) and the oncologist just called with results today (4/24/18). The Radiologist said after the scan that the scan may or may not need to be redone because there was breathing occurring when holding of breath was needed, but the oncologist said the scans were clear and usable. She said there is a 1x3cm mass in the abdominal region, on the right side. She didn't say it was by any organ and scans of her chest and pelvis showed clear (only scans of
chest, abdomen, and pelvis have been ordered for the past CT scans). She said the surgical board would meet tomorrow and review the scans to advise on what the next course of action should be.. whether a biopsy or another/different scan. They don't know if the mass is cancer, benign or malignant at this point. She said she would call back tomorrow afternoon after the surgical board meets to review the CT scans.
She says she doesn't know what the surgeons will do because it's "so small" but will get back to us tomorrow afternoon by phone. I'm not sure how she can say it's small if 3cm is over one inch already.

The oncologist was asked if the last CT scan from August 2017 (7-8 months ago) should have also picked up the mass, she said it should pick up if it's a millimeter or larger (think that's what she said, or was it 1cm), so it wasn't seen somehow. She said the spleen looks clean but didn't mention the other organs that I recall.

Here are questions to which advice/feedback would be greatly appreciated!:

1. Should the previous CT scan have caught what is by now a 1x3cm mass?
2. Could she be wrong and the latest CT scan from last Saturday (which the Radiologist said had too much breathing going on) have been compromised causing a false positive?
3. Would CEA rise over the past 5-6 quarters straight, maybe due to this mass, mean it is definitely cancer or would CEA rise for non-cancerous masses forming?
4. Would you say 1x3cm is considered "small"?
5. What do you recommend as next courses of action?
6. What do you think the surgical board's assessment be tomorrow after they review the CT scans? Or what ought they be?
7. What other things should be done? What other questions should be asked?
8. For some reason this oncologist set CEA above 6.0 as threshold for action. But it seems this message board indicates any CEA value over 4.0 or 5.0 would be actionable?
9. How fast typically do masses form? Or how long would it typically take for something to grow to a size of 1cmx3cm?

Really worried and hoping it's something benign or something that could be resolved with shaving bits of the liver, as it seems some with colon cancer and have gone NED only to see some sort of recurrence have had successful surgeries to remove something from their liver and have continued living for like 10 years+. The scariest thing would be that it is located somewhere inoperable.


Please let me know if you have any valuable feedback or advice on this. Thank you kindly in advance!

Below is the CEA history:

10/31/15 - 1.9
1/26/16 - 1.6
4/30/16 - 1.9
7/28/16 - 1.9
10/29/16 - 1.7
1/28/17 - 2.1
4/29/17 - 3.0
7/29/17 - 3.1
11/1/17 - 4.2
2/6/18 - 5.5
3/5/2018 - 5.5
4/2/2018 - 6.1

User avatar
betsydoglover
Posts: 978
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Update CEA & CT Scan Results - Advice/Feedback Needed

Postby betsydoglover » Tue Apr 24, 2018 5:10 pm

We aren't docs, so can't answer most of your questions. A 3cm nodule is not small, but it's not considered big also. CEA has never been an indicator for me, but for those for whom it is, it is the trend that mostly matters. So, the fact that yours is going up is worth checking out. A CT can sometimes miss things, especially if breathing is off. On the other hand, things can grow. If it were me, I'd push for another CT - the radiologist's view should trump the onc in my opinion.

Good Luck,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

zx10guy
Posts: 233
Joined: Mon Jan 07, 2013 12:54 pm

Re: Update CEA & CT Scan Results - Advice/Feedback Needed

Postby zx10guy » Tue Apr 24, 2018 5:52 pm

We've been tracking my elevated CEA levels for the past year. It went from 5.2/5.4 ish to 15.6 in 3 months and has stayed in the 15 range throughout last year. We've done everything except open me up to do exploratory; CEA tests, CT w/contrast scans, PET scan, MRI, small bowel capsule endoscopy, upper GI endoscopy, and colonoscopy. Nothing found except the elevated CEA. My oncologist even added AFP to the last blood test which turned out normal. I'll find out if things are still status quo next month when I go in for my 6 month checkup.

FindTheBestHelp
Posts: 92
Joined: Mon Jul 14, 2014 12:13 am

Re: Update CEA & CT Scan Results - Advice/Feedback Needed

Postby FindTheBestHelp » Tue Apr 24, 2018 7:22 pm

Do you have any inflammation? That could cause CEA to go up bit not sure by how much.

e_enyedy
Posts: 29
Joined: Sat Nov 25, 2017 5:28 pm

Re: Update CEA & CT Scan Results - Advice/Feedback Needed

Postby e_enyedy » Wed Apr 25, 2018 7:26 am

After diagnosis had sigmoid colectomy- Initial Dx T1N0M0- then spent almost 3 years wirh no chemo, but trimestral PET/CT scans. Almost on the 3 yrs mark a luminiscent spot came up in the abdomen- it was biopsoed and it turned into met in the pre-sacral space. Surgry was excluded and went on 8 sessions on Folfox with avastin. Chemo worked - n the past two years have been on "maintenance chemo"-that is, 2 weeks of eloda and an Avastin infusion every 3 weeks. Thankfully NED.

CEA bever (NEVER) went over 0.9- BTW CEA is not working with everyone.

Unfortunately, I can no answer yur other questions - guess many of the answers will depend on your biopsy results.
All I can add: don't despair or overreact: there is life after metastasis - I am 77 and fully active (working 35 hours a week)

Regards

E
77 yrs male (73 at Dx)
2/13 Dx Carcinoma, Sigmoid Colon
3/13 Sigmoid Colon Hemicolectomy,( 12"+)
3/13 Pathology Staging: T1N0M0; no follow-up chemo
5/15 Recurrence: in pre-sacral space -no other mets detected (Instantly became Stage IV)
5/15 Started 8 sessions of Folfox + Avastin
11/15 Finished chemo, PET/CT: NED
11/15 Started Xeloda+ Avastin every 3 weeks. Still Doing it.
Still NED -(Hope treatment keeps working)

FindTheBestHelp
Posts: 92
Joined: Mon Jul 14, 2014 12:13 am

Re: Update CEA & CT Scan Results - Advice/Feedback Needed

Postby FindTheBestHelp » Fri Apr 27, 2018 3:25 pm

Hi all, just as an update:

I have several questions embedded below and would greatly appreciate all of your feedbacks!


Anyway, about 4 years ago, since chemo (FOLFOX) was already given to treat colon cancer following a surgery to remove a cancerous mass which made necessary a total colectomy the oncologist said that the recurrence may now be resistant to the FOLFOX treatment and therefore chemo is ruled out, since there isn't another known treatment that would be effective. But how would they know it's not a new cancer rather than a recurrence? Would it also be resistant to FOLFOX now since 6 months of it was already given for the colon cancer 4 years ago? I have read of some people having colon cancer, getting an operation and then receiving chemo who some years later find a met in the liver and get an operation to cut out the met, then are placed on maintenance chemo and they continue to live NED for many, many years into old age. So this would seem to mean it's possible when there is a recurrence for chemo to still be responsive after one has already had it before in the past?

The medical team's plan now is to perform a head to toe PET scan to make sure that everywhere else in the body shows no evidence of disease/no other masses, except in the abdomen where the mass was found during a recent CT scan. Should the PET scan come back confirming no issues with the rest of the body from head to toe, except for the 1cm x 3cm mass in the abdomen found by CT scan, an appointment would be made to meet with the surgeon to discuss the current situation and surgical plan to remove the mass.

After the mass is removed, they would just closely monitor through more frequent blood tests and scans to see if there are any changes found thru imaging or CEA number increases. But it is believed that going back on chemo would not be effective, as the recurrence could be resistant to FOLFOX now.

The oncologist said that, should it come to it, but hopefully it doesn't, we are fortunate to qualify for immuno-therapy, and that only 10% of people meet the criteria to qualify. The oncologist also said that the cancer may be missing a certain protein and that is why there is a match for qualifying for immuno-therapy.

Does the above sound like the best, standard course of action given the situation as described above?

Should there be a biopsy on the mass to be removed via surgery?

Should chemo be ruled out this time around?

Why would trying immuno-therapy right after surgery not be a good idea, rather than giving no post-surgical treatment to kill of any cancer cells in the blood stream/body elsehwere, and simply monitoring thru blood tests and CT scans for any changes and just waiting things out?

I've read about folks who have taken something like tumeric just before their initial colon cancer operations, as it was said to be helpful? Would that be the case here for surgery to deal with removing a mass from a recurrence?

How do we know it's a recurrence and not a new/secondary cancer? Should we assume it's resistant to FOLFOX? And is FOLFOX really the only known effective treatment currently?

I'm worried about taking a PET scan so soon after just having a CT scan. Kidney function has been compromised over the years after going thru chemo about 2.5 years ago. But it has been good enough that the Radiology department says an extended stay hooked up to IV for most of the day after the CT scans (to help flush out the trace fluids) has not been necessary. Just drinking a lot of water after the scan has been the recommendation. But with this PET scan coming so soon after the CT scan, I'm worried about secondary cancers and increasing the risk of recurrences due to all of the radiation exposure. And also worried about the further damaging of the kidneys.

What would you guys do if you were in my current situation?

radnyc
Posts: 446
Joined: Tue Apr 06, 2010 6:32 pm

Re: Update CEA & CT Scan Results - Advice/Feedback Needed

Postby radnyc » Sat Apr 28, 2018 9:08 am

zx10guy wrote:We've been tracking my elevated CEA levels for the past year. It went from 5.2/5.4 ish to 15.6 in 3 months and has stayed in the 15 range throughout last year. We've done everything except open me up to do exploratory; CEA tests, CT w/contrast scans, PET scan, MRI, small bowel capsule endoscopy, upper GI endoscopy, and colonoscopy. Nothing found except the elevated CEA. My oncologist even added AFP to the last blood test which turned out normal. I'll find out if things are still status quo next month when I go in for my 6 month checkup.


Have your thyroid checked.
DX Jan 2010, at age 47
Feb - colon resection - 2/17 nodes positive
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April 2011
HAI Pump removed Dec 2015


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