Recurrence, Surgery, and Post-Surgery CEA

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

Recurrence, Surgery, and Post-Surgery CEA

Postby FindTheBestHelp » Thu Jun 28, 2018 11:44 pm

Hi All,

After recurrence was diagnosed in May 2018, just last month, the surgery to remove the tumor in the same area as the original cancer from 4 years ago was said to be successful. Surgeons said it wasn't touching any organs and was surrounded by some fatty or other tissue. Pathology report, per oncologist, came back indicating margins were clean. One surgeon had mentioned while operating, did not see any visible cancer on nearby organs. This all seemed to bode well. After recovering from surgery, took another blood test just a few days ago and CEA came back as 3.3. This is not the historic low. At some point 4 years ago after surgery and chemo for the initial colon cancer, either after surgery or after the 6 months of chemo (Folfox) that followed, CEA fell
to 1.xx. So the expectation would be that after this last surgery, CEA would fall to 1.xx if the tumor was the only cancer detected and it was cleanly removed?

Could CEA still be in the process of dropping post-surgery (to be reflected in next month's CEA test), or should it have immediately dropped to historic lows again (1.xx) right after surgery? In other words, is it normal to have some lag time between surgery and tumor removal and CEA bottoming out?

Thank you in advance!
---

Just as a little background, if it helps:

- Diagnosed with colon cancer 4 years ago. Diagnosed at that time as Stage 3b. High risk with a somewhat aggressive cancer.
Had surgery to remove (required total colectomy - removal of large intestine) to remove tumor, plus some lymph nodes, then
had 6 months of chemo (Folfox), after which a CEA test was performed and the result was in the 1.xx range.

- Quarterly blood tests and 6-month CT scans showed normal for about 1.5 years (CEA still in the 1.xx-2.xx range).

- About 1.5 years in, CEA pattern stopped hovering in the 1.xx-2.xx range, up and down, and showed only increases practically
each quarterly blood test. 2.xx, to 2.5x to 3.1x, etc.. until the most recent CEA test in May of this year at 6.8x, when
both a CT scan and PET scan showed a mass in the same abdominal region as the original cancer 4 years ago. An operation
was performed the 1st week of June and was told the mass was not on any organ but was surrounded by some fatty or other
tissue and was removed successfully. Pathology report came back and oncologist said it appears the cancer was removed and
the margins were clean. But she also said something about it being on top of something and nothing could be done about that.
This was an odd statement and didn't get clarification about it at the time. She said also that now that it is out, we want to hope
that it doesn't come back, because the fact that another mass grew in the same general area 4 years later suggests some
microscropic residual cancer dropped in that area and was growing, and that the chemo apparently didn't kill it off (suggesting
some of the cancer became resistant to FolFox), so it doesn't look like a viable avenue to try chemo again since Folfox is
the best known treatment and if it doesn't completely to kill all cancer, there's really no other alternative. But then she indicated
at a post-op meeting that she has other treatments but will have to see based on the situation whether she'll need to use/try them.

She also mentioned being a rare candidate (10-15% of all patients) for immunotherapy, if, God forbid, it came down to it and things
got to a point where it would be needed to be tried. She said about 30-40% of all qualified candidates responded well to it.

- A few weeks after the early June surgery (which happened just weeks ago), a blood test was done just a few days ago and CEA
result came back 3.3. Have to go back thru records to see if after the first colon cancer was diagnosed and after the surgery of 4
years ago, if the CEA was also not at rock bottom immediately after surgery and gradually was still dropping to 1.xx range, or if
it immediatelly dropped to 1.xx range. Or if it only dropped to 1.xx range after the 6 months of chemo that had followed that
surgery.

- Worried now after the CEA result form the blood test done a few days ago, because CEA looks like a reliable indicator here,
having been historically accurate so far.. if the surgery went well and the only detectable cancer was removed in early June
via surgery, shouldn't the CEA have dropped to 1.xx (the rock bottom range based on historic results)? Could it suggest the
cancer wasn't cleanly removed, even though the pathology report seems to say it was?

- Have sent an email to the doctor asking if the same CEA test used (as always) in the past was also used this time. Since the ranges
of normal for different tests can differ. Also asked if it would have been expected post sugery and succcessful tumor removal to
see CEA lower than 3.3 (like 1.xx instead should have been expected?).




same area

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: Recurrence, Surgery, and Post-Surgery CEA

Postby Deb m » Fri Jun 29, 2018 7:21 am

I don't have an answer to your question except to say that my husbands cea's were all over the place from 2.6 to a high of 5.8. I don't think his was a good marker but well never know because they never did a pre cea before surgery so we have no baseline. There are other things that can cause cea's to rise, inflammation being the biggest one. I wish I could tell you something that would help answer your question , but I don't. I'm sure others will chime in though. It sounds like it was all localized, which is very good.

Hang in there and I hope you get some answers,

Deb m

hawkowl
Posts: 132
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Recurrence, Surgery, and Post-Surgery CEA

Postby hawkowl » Fri Jun 29, 2018 11:50 am

CEA does tend to bounce around a lot right after surgery, and may well still be in the process of dropping. Hopefully next month's value will reflect that and will be lower yet. There are certainly other chemo options (other than FOLFOX) and it is never a bad idea to consider a second opinion even if you are totally satisfied with your current oncologist. Hope to hear good news from you after your next CEA!
Dx 12/2014 T3N2MX (distant LPLN) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda, SBRT
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7, scans stable...
6/2020 5 years of normal CEA and stable scans
Now dealing with pyoderma gangrenosum.
Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

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

Re: Recurrence, Surgery, and Post-Surgery CEA

Postby FindTheBestHelp » Fri Jun 29, 2018 3:16 pm

Thanks a lot for the replies. What's the best way to find your medical provider's best oncologist in the area (Kaiser N. Calif)?
Asking the nurses or staff, I don't think they'll be candid with you because there may be some policy against it?

Definitely think getting 2nd opinions and 2nd looks from different eyes (different hospital, since within the same hospital, the oncologists may or may not tend to stick together) would be beneficial and healthy.. so looking to get one from a different Kaiser in the area. Not sure how to do this without offending the current oncologist, who would find out. I guess sending a note before hand via e-mail, to let them know would be sufficient.

But how would I best be able to identify the best oncologist in my Kaisers in my area.. there are like 3 major Kaisers within 30 minutes.

teresajj1
Posts: 42
Joined: Sun Mar 27, 2016 7:36 pm
Location: Florida

Re: Recurrence, Surgery, and Post-Surgery CEA

Postby teresajj1 » Fri Jun 29, 2018 5:04 pm

I would be a little concerned about the statement "it was on top of something and that couldn't be removed". Like you, wondering what "that" is?

Unfortunately CEA just isn't a reliable marker for everyone. It wasn't for me until it went from 1.9 to a whopping 447 in just 7 months. You may just have to wait another 4 weeks to see the latest number and if its increased then there is probably a reason for concern. Hopefully it goes down or stays the same!
Dx 3/16 @ 36yrs Stage IIIB
RT Hemi-colectomy
T3N1M0. 2/37 lymph nodes
4/2016 Started 12 rounds of 5 FU & Oxi Chemo
7/2016 Stopped chemo after 5 rounds due to chest pain
8/2017 MUYTH Gene
10/2017 Clear CT Scan; CEA 1.9
5/2018 CEA 447
6/2018 Stage IV w/drop metastases to peritoneal cavity
7/2018 Cytoreductive surgery & Hipec (3 tumors, 2 nodules on bladder, and ovaries removed)
05/2019 Clear CT
10/2019 2 new nodules in pelvic area/CEA 19
11/2019 6 Rounds of Chemo

hawkowl
Posts: 132
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Recurrence, Surgery, and Post-Surgery CEA

Postby hawkowl » Fri Jun 29, 2018 9:24 pm

FindTheBestHelp wrote:But how would I best be able to identify the best oncologist in my Kaisers in my area.. there are like 3 major Kaisers within 30 minutes.


Do you have a primary care physician you know and trust? They will definitely have some insights about who the best local oncologist might be. And I found that the different oncologists in the group I see all have slightly different approaches and have each given me some good advice.

And sometimes it is worth going out of network even if it means a higher out of pocket cost
Dx 12/2014 T3N2MX (distant LPLN) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda, SBRT
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7, scans stable...
6/2020 5 years of normal CEA and stable scans
Now dealing with pyoderma gangrenosum.
Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

CAGirl
Posts: 59
Joined: Fri Aug 25, 2017 4:55 pm

Re: Recurrence, Surgery, and Post-Surgery CEA

Postby CAGirl » Sat Jun 30, 2018 12:38 pm

I can tell you I love my Oakland Kaiser oncologist -- Dr. Ashok Pai. I switched to him from another (female, same as yours, maybe?) oncologist at Kaiser who was absolutely HORRIBLE. Also, though, I think even within the same facility, they respect your decision to get a second opinion. Dr. Pai even expressed confusion to me (without seemingly undermining his colleague's credibility) about why she would have used such an outdated system to inform me I had a 30% chance of being alive in 5 years. I made a friend during chemo (same stats as I, kids same age, etc.) who also had Pai and loved him.
Also, not sure if you know this -- but for a... relatively nominal fee (my dad paid for it upon diagnosis), you can get an online 2nd opinion from an expert doc at UCSF. That was informative and reassuring for us.
Dx 2/2017, age 45, 2 kids: 6 yrs & 3 yrs
History of Crohn's disease - dx in 1997; in remission, thus no colonoscopy in over 10 years
Anemia dx 11/16: GI doc assured me "the likelihood of colon cancer" was "very low".
Stage 3C - T3N2b
8/64 lymph nodes; clear margins surgery 3/17
12 cycles of Folfox 4/17-9/17
3-month CT scan midway through chemo, no changes
2-3-mo CT scan post chemo 11/17 slightly larger lung nod (incr. from 7mm to 8 or 9mm)
CT scan 3/18 - NED
clear CT scan 1/2019 NED

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: Recurrence, Surgery, and Post-Surgery CEA

Postby rp1954 » Sat Jun 30, 2018 3:55 pm

My view is more blood tests and off label chemistry with mild chemo if they only offer waiting to see, or waiting for a trial. Please review my threads. I'm convinced when our doctors resist related, inexpensive, extra blood tests, they seriously fail us. Nevertheless, our future is still in our hands when we take our own actions, and collaborate.

Slow the cancer and markers down, and try to stop or reverse the CEA or other marker trends, with milder treatments.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

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

Re: Recurrence, Surgery, and Post-Surgery CEA

Postby FindTheBestHelp » Sun Jul 01, 2018 4:28 pm

teresajj1 wrote:I would be a little concerned about the statement "it was on top of something and that couldn't be removed". Like you, wondering what "that" is?

Unfortunately CEA just isn't a reliable marker for everyone. It wasn't for me until it went from 1.9 to a whopping 447 in just 7 months. You may just have to wait another 4 weeks to see the latest number and if its increased then there is probably a reason for concern. Hopefully it goes down or stays the same!


I will get clarification from the surgeon at the post-op follow-up appointment in about a week. The oncologist is the one that made that weird comment.. and I just don't get it.. she says the pathology report came back and the tumor was removed plus clean margins.. that the tumor was not on any organs but instead was surrounded by fat or other tissue.. but then added something kind of vague about how it was against something and there was nothing that could be done about that.. makes no sense to me.. also she said, hopefully it doesn't return, which would imply that it was removed and is gone rather than there's something they couldn't get or couldn't do anything about.. whatever that is.. I plan to get clarification from the surgeon.

this oncologist is out on like Mondays and Tuesdays, where she's doing research or something else at another location. I felt she was quick to say we reached the 3 year mark, where at the "3 year mark" meeting she said the 85% chance of recurrence becomes 15% and she made blood tests every 6 months and scans every 1 year, instead of blood tests every 3 months and scans every 6 months. I had expressed repeatedly concern that the CEA values for 1.5 years (just about every quarter) was going up, with one quarter staying the same. It went from 1.xx, to 2.xx, jumping a full point on some quarters (100% increase), and never went down.. initially for the first year and a half of CEA measurements, it was in 1.xx range and would go up and down each quarter.. but the oncologist said we'd keep monitoring until it exceeded 5.0. when it reached 6.1 and then 6.8, she pulled in blood tests to monthly and CT scan to 3 months. When it revealed a tumor in the same area of the abdominal area as the original colon cancer, she ordered a PET scan and it came back confirming the CT scan. Surgery was ordered and was completed about 3 weeks ago. CEA has been a seemingly accurate marker in this case.. those results of consistently increasing CEA over 1.5 years was confirmed to be recurrence via scans. For the original cancer, CEA went up to like 200 something, and after surgery and 6 months of FOLFOX chemo, went down to 1.xx range.

So my thinking is after this 2nd surgery, the CEA should be back down to 1.xx range.. being 3.3 seems worrisome.. like something is still there.. so my hope is that it takes time after surgery and the inflammation (it was a more invasive surgery, opening thru the belly region) for things to heal and maybe the CEA still is on its way down from 3.3 at the time of the blood test? We will know at the next monthly blood test what the trend is I guess..

At the time of the initial colon cancer surgery 4 years ago.. laparoscopic surgery was recommended, as it was minimally invasive.. what was required was a total colectomy (removal of the entire large intestine) because the cancer was on that and it was safer to remove the whole thing. The surgeon had said after surgery that he got everything he could out.. including some lymph nodes and margins.. since the recurrence was in the same general area 4 years later, surrounded by some fatty tissue, my thinking was that maybe something was missed during that surgery. I asked the surgeon if maybe it would have in hindsight been better not to opt for laparoscopic surgery for the initial cancer and maybe the more invasive larger cut thru the belly would have enabled better access to get all of it out.. the surgeon seemed a little miffed by that question.. replying that he has done hundreds of these surgeries and "he knows".. but I only brought it up as a genuine question, and asked it nicely and not in an accusatory way, because he said he was opting to go with more invasive surgery this time to be able to get to the cancer better.. by that logic, it triggered my question about whether that would have been better 4 years ago as well... seems reasonable to ask.

both the surgeon and oncologist usually meets patients for like 10 minutes.. there are no long 30 minute sessions where we go over scans, look at the location of the tumor, get shown the actual pathology reports, and go over details like that..
instead they are quicker chats, and they get on the computer and give you a general summary of results but it feels like something is lacking.. feels a bit rushed.. and when i come armed with questions, I can't help but feel a little rushed to get them out one after another.. kind of like how reporters feel they have to get out quick one liner questions to the President of the United States at a fast moving press briefing.


the surgeon said while at the hospital post surgery that chemo may be needed again.. but he then backed off and said but he'd leave it to the oncologist to decide. the oncologist said folfox is the only known effective treatment and since there was a recurrence, some cancer cells may have become resistant to it so there's no point in going back to folfox, but that if it comes down to it later on, she has some other treatment options.. whatever those are.. and she also mentioned being a candidate for immuno therapy but it wouldn't be used now because the tumor was removed so there'd be no way to know if the immunotherapy was working in killing off any residual cancer cells.. so it'd have to be saved for if the cancer returns and progresses for that reason.. and she may have said something about it being expensive..


i wonder about the initial cancer, 6 months folfox chemo period.. where about month 4 or 5, she reduced the oxypalatin and kept the same dosage of leucovorin because it seemed the folfox was having some adverse effect and she wanted to avoid permanent neuropathy. In hindsight, I wonder if it was a good call to "water down" the folfox a bit.. if maybe it was better to keep aggressively attacking it at full stength..

Right after the initial cancer diagnosis 4 years ago, after getting the surgeon and oncologist recommendations of surgery (total colectomy) and 6 months of FOLFOX, I sought out second opinions from an oncologist at the same hospital.. he seemed kind of weird.. detached.. had this smirk or smile on his face while we talked.. and i just got the impression he wasn't the eagle eyed, attention to detail type that I'd feel more assured by.. I went to a different Kaiser and met with another oncologist.. he was a nice older man.. patient, seemed caring, good natured.. we sat and discussed the diagnosis, prognosis, options.. but a red flag for me seemed to be that he was less aggressive about scans than the current oncologist.. he goes by the national recommendation of annual scans.. where as the current oncologist goes by 6 months.. that made me feel better and why i ultimately stuck with this female oncologist since day 1.

I'd like to seek 2nd opinions about options post-surgery for this recurrence.. to see what all my options are.. but don't want to blindly book appointments with just another random oncologist or two from Kaiser (either at same and/or different hospital location). I'd rather find some way to determine who are considered the top oncologists at Kaisers in my area and see if I can get their input..i'm not sure anyone at kaiser would be able to tell me one oncologist is best over the others..maybe by policy? So not sure where/who to ask...

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

Re: Recurrence, Surgery, and Post-Surgery CEA

Postby FindTheBestHelp » Sun Jul 01, 2018 4:30 pm

hawkowl wrote:
FindTheBestHelp wrote:But how would I best be able to identify the best oncologist in my Kaisers in my area.. there are like 3 major Kaisers within 30 minutes.


Do you have a primary care physician you know and trust? They will definitely have some insights about who the best local oncologist might be. And I found that the different oncologists in the group I see all have slightly different approaches and have each given me some good advice.

And sometimes it is worth going out of network even if it means a higher out of pocket cost


My Personal Care Physician we have is fairly good and generally trusted. I think it may not hurt to ask her for her opinion.. maybe she has heard about who are the best oncologists over time working there..

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

Re: Recurrence, Surgery, and Post-Surgery CEA

Postby FindTheBestHelp » Tue Nov 13, 2018 3:01 pm

FindTheBestHelp wrote:
hawkowl wrote:
FindTheBestHelp wrote:But how would I best be able to identify the best oncologist in my Kaisers in my area.. there are like 3 major Kaisers within 30 minutes.


Do you have a primary care physician you know and trust? They will definitely have some insights about who the best local oncologist might be. And I found that the different oncologists in the group I see all have slightly different approaches and have each given me some good advice.

And sometimes it is worth going out of network even if it means a higher out of pocket cost


My Personal Care Physician we have is fairly good and generally trusted. I think it may not hurt to ask her for her opinion.. maybe she has heard about who are the best oncologists over time working there..


Thanks I asked the PCP and she had no recommendations/wasn't knowledgeable about any one to recommend she says.


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