Pre and post surgery question

Please feel free to read, share your thoughts, your stories and connect with others!
beach sunrise
Posts: 64
Joined: Thu Mar 05, 2020 7:14 pm

Pre and post surgery question

Postby beach sunrise » Sat Mar 07, 2020 2:47 pm

Hi All, been battling rectal cancer since Aug 2019. Neo-adjuvant chemorad 6 wks (5FU only for chemo). Clinical stage T3N0. Surgery 2 mths ago, path report T4bN1aM0, clear margins. My worry is CEA was 24 at surgery and now right before 1st adjuvant FOLFOX is still high 7.0. Inflammation levels are on high side also. I won't get genetic testing report until Monday, I will have to ask for it I guess as they haven't offered to tell me its in. I am worried since cea and inflammation is still high that maybe something was missed/not caught on scans I've had so far. Any thoughts?
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surgery Jan 2020 APR/colostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj FOLFOX6, cea 7
1st rd complete, 2nd 3/9/20
MHL1 +
PMS2+
MSH2+
MSH6+
Post surg chemo sensitivity testing at Nagourney Cancer Institute "Test failed due to neo-adj chemorad did its job. Not enough cancer cells to test." Good news cancer pretty much dead, bad news not knowing what chemo would work best for my cancer

stu
Posts: 1341
Joined: Sat Aug 17, 2013 5:46 pm

Re: Pre and post surgery question

Postby stu » Sat Mar 07, 2020 3:46 pm

Hi ,
The one thing I have learnt about CEA , it can take a while to drop back down when it’s spiked . I imagined it would take a week or two but it took over six months for whatever had caused my mum’s to spike to resolve and drop back down . There was no cancer found during that time and she had two scans . All of a sudden it dropped !
Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

beach sunrise
Posts: 64
Joined: Thu Mar 05, 2020 7:14 pm

Re: Pre and post surgery question

Postby beach sunrise » Sat Mar 07, 2020 4:02 pm

Thank you! That gives me some relief. I have felt defeated for sure. I think I might ask for a more comprehensive blood panel to include more information. It seems like just cea is not enough and there are many other markers that could be useful. I just don't know what exactly to ask for so I am researching.
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surgery Jan 2020 APR/colostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj FOLFOX6, cea 7
1st rd complete, 2nd 3/9/20
MHL1 +
PMS2+
MSH2+
MSH6+
Post surg chemo sensitivity testing at Nagourney Cancer Institute "Test failed due to neo-adj chemorad did its job. Not enough cancer cells to test." Good news cancer pretty much dead, bad news not knowing what chemo would work best for my cancer

JJH
Posts: 290
Joined: Mon Apr 24, 2017 7:26 am

Re: Pre and post surgery question

Postby JJH » Sun Mar 08, 2020 1:17 am

beach sunrise wrote:... It seems like just cea is not enough and there are many other markers that could be useful. I just don't know what exactly to ask for so I am researching.

Here is a post that lists some possibilities for other markers:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=58157&p=458117#p458117
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

beach sunrise
Posts: 64
Joined: Thu Mar 05, 2020 7:14 pm

Re: Pre and post surgery question

Postby beach sunrise » Sun Mar 08, 2020 1:44 am

Thank you!!!! We just got in from watching the Kownacki fight and was getting ready to do some research. You saved me a lot of time. My panel is the chem 14 and cbc w/ diff. So, it is missing some important markers I do believe.
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surgery Jan 2020 APR/colostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj FOLFOX6, cea 7
1st rd complete, 2nd 3/9/20
MHL1 +
PMS2+
MSH2+
MSH6+
Post surg chemo sensitivity testing at Nagourney Cancer Institute "Test failed due to neo-adj chemorad did its job. Not enough cancer cells to test." Good news cancer pretty much dead, bad news not knowing what chemo would work best for my cancer

JJH
Posts: 290
Joined: Mon Apr 24, 2017 7:26 am

Re: Pre and post surgery question

Postby JJH » Sun Mar 08, 2020 12:06 pm

beach sunrise wrote: .. I am worried since cea and inflammation is still high that maybe something was missed/not caught on scans I've had so far. Any thoughts?

Yes, I have the same thoughts, given what you have written in your signature.

Your initial staging was set at T3N0M0 (i.e., Stage 2A) while at the same time you had a very high CEA. It seems to me that you were understaged at the outset. With a CEA that high, you would expect metastatic involvement, either at the local level or remote level (with at least N1 or M1, or both, but not with N0M0 which would signify a total absence of any level of metastatic involvement.)

I don't think a T3 primary tumor would generate a CEA that high. Normally, I think CEA elevations in the high double-digit range are linked with metastases, not with primary tumor expression. That's my personal opinion. CEA is never used as an initial screening device since it has such a low validity in the context of primary tumors.

In my opinion, something went wrong at the very beginning when nothing was done to re-test CEA or to re-scan with higher definition scanners or with MRI, or PET/CT scan to resolve the inconsistency with the clinical staging. The initial scans should have detected the large, intrusive T4b tumor, but they didn't. The initial scans didn't detect the lymph node involvement, either.

I think it would help to have another set of scans done at a different facility to verify that there are in fact no detectable remote metastases in the liver, the lungs or elsewhere.

That's just my personal opinion.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

beach sunrise
Posts: 64
Joined: Thu Mar 05, 2020 7:14 pm

Re: Pre and post surgery question

Postby beach sunrise » Sun Mar 08, 2020 1:01 pm

I think same. Cancer is camping out somewhere but not detected on CTs, MRIs or PET. CRP was very high also so I went to see a nutritionalist and found out I am gluten sensitive, low testrostorone/estrogen and high cholerestrol. I am watching the gluten and noticed the CRP has went down 40 points in a week to 90 now. I feel like I am getting no answers I need and onc just says folfox will tell if we have managed the cancer. I will tell him tomorrow about the extra blood work I had 2 wks ago with the nutritionalist. He will likely not be happy with me but it is what it is.
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surgery Jan 2020 APR/colostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj FOLFOX6, cea 7
1st rd complete, 2nd 3/9/20
MHL1 +
PMS2+
MSH2+
MSH6+
Post surg chemo sensitivity testing at Nagourney Cancer Institute "Test failed due to neo-adj chemorad did its job. Not enough cancer cells to test." Good news cancer pretty much dead, bad news not knowing what chemo would work best for my cancer

stu
Posts: 1341
Joined: Sat Aug 17, 2013 5:46 pm

Re: Pre and post surgery question

Postby stu » Sun Mar 08, 2020 4:00 pm

Hi ,
I am by no way an expert but It would seem to me the influence that is causing the spike is the main factor . Markers that don’t drop due to cancer influence would be different from markers that spike due to inflammatory reasons . I think you mentioned your inflammatory markers were raised . That’s also something to discuss with your oncologist.

My mum had a significant spread and was around seven at diagnosis. Her markers did drop below five but they hover around it . With time we have a feel of what is normal for her . I keep an eye on them but find the scans much more reliable at detecting spread .It can be handy to indicate a scan is beneficial but that’s as good as I find it .

Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

beach sunrise
Posts: 64
Joined: Thu Mar 05, 2020 7:14 pm

Re: Pre and post surgery question

Postby beach sunrise » Sun Mar 08, 2020 4:38 pm

Thank you for your input. It is all so confusing. I go to the apts and all I get is "bloodwork looks good." I can't remember exactly what I asked onc right before starting folfox but his reply was "someone's been reading." My reply was "More than reading, researching this devil inside me." He never did answer my question, lol. I don't think he likes self educated patients.
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surgery Jan 2020 APR/colostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj FOLFOX6, cea 7
1st rd complete, 2nd 3/9/20
MHL1 +
PMS2+
MSH2+
MSH6+
Post surg chemo sensitivity testing at Nagourney Cancer Institute "Test failed due to neo-adj chemorad did its job. Not enough cancer cells to test." Good news cancer pretty much dead, bad news not knowing what chemo would work best for my cancer

stu
Posts: 1341
Joined: Sat Aug 17, 2013 5:46 pm

Re: Pre and post surgery question

Postby stu » Mon Mar 09, 2020 4:08 am

Hi ,

Firstly I have just read that it can take one to four months for CEA to return to normal after surgery . Hope your in that group .
Secondly I am a little shocked at some of the things about CEA I have just read up on . There has certainly been a lot of small research studies in the last few years but some of the analysis seems really simplistic . If my mum was diagnosed now and reading some of the research articles I could easily be fooled into thinking great my mum is only at 7 , indicates early diagnosis, and good prognosis and survival from some of the information circulating. However her scan showed a liver with significant spread . Maybe there is a prognostic element as she has done well . But I would not look to CEA in isolation to form a bigger picture . That’s my take .

I think you have to keep in mind there is a good reason CEA is not used as a diagnostic screening tool . There are far too many variables. The scans are much better at detecting recurrence. CEA has value and more for some people than others .

It is so frustrating when oncologist speak like that . It is totally reasonable to want to understand , prepare and research what is happening. In every other area of your life you would be regarded as wise and thorough , I can’t imagine anything more important than your own health . I am sorry he/ she brushed you off like that . However I have every confidence you will find out all you need to know and seek out what is best for you .

Research is interesting but it is a revolving door . In the last ten years lots of information has changed . Some oncologist do have a bit of an art to their practice particularly in a stage 4 setting when they have to opt for a clinical judgements. Some don’t seem to like to be challenged at all and are stuck in their way of practice. But sure that’s what second opinions are for . There is always another way . So keep reading and advocating for yourself .

Some information is very conflicting and I think sometimes this is the side oncologist have a grasp off from years of experience. If you look at some of the research it would indicate a high CEA after surgery is an indicator until you read another piece of research that states it can take up to four months to settle post surgery . Your oncologist has a working knowledge of patients who will have done just that . However a good one will keep an eye on it , maybe add in other blood panels as has been suggested . And I know you are going to make sure this does not slip . You will do what’s best for your health and full recovery .

I wish you every success ,

Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

JJH
Posts: 290
Joined: Mon Apr 24, 2017 7:26 am

Re: Pre and post surgery question

Postby JJH » Mon Mar 09, 2020 7:09 am

At this point in your journey there are certain data items that should have been captured already. Your signature only shows a subset of them.

Items that seem to be still missing in your signature at this point in time are the following:
  • Tumor Location: (cm. from the anal verge)
  • Tumor Type: adenocarcinoma, etc.
  • Tumor Size: (in cc.)
  • Stage: (Stage III-C ?)
  • Lymph node involvement: Number of positive nodes out of number sampled
  • Lymphovascular invasion: present/absent
  • Perineural invasion: present/absent
  • Primary surgery type: laparoscopic/open? LAR/ULAR? (and how long did the operation take in order to deal with the invasive T4b tumor?)
  • Ostomy support: Ileostomy present /absent?
  • MSI-status (or dMMR status) - This is needed to determine the best chemotherapy treatments to use (and which ones will likely be ineffective). It should have been tested at the time when the original tumor was being tested for malignancy .
  • KRAS/BRAF/NRAS mutation status. (required for Stage IV, but highly recommended for Stage III-C)
    Genetic vs. Genomic testing; KRAS vs. BRAF mutations; biomarkers
    https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=62768&p=494630#p494630
    https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=61508&p=500394#p500394

Other items that would be good to know at this point in time are:
  • National ranking of the hospital that performed the initial diagnosis. (see U.S.News & World Report hospital rankings)
  • National ranking of the hospital that did the initial treatments (chemo/rad; surgery)
  • Credentials (board certification) of doctors (surgeon, radiation oncologist, medical oncologist, etc.) (see http://www.certificationmatters.org website)
  • Comorbid conditions: Chronic illnesses requiring continuing treatment (e.g., diabetes, high blood pressure, high cholesterol,etc.)
  • Other risk factors: Smoking; obesity; substance abuse, etc.
  • It would also be good to know which organ or structure the T4b tumor invaded, and how much of that organ had to be removed by surgery in order to insure clear margins. This may help explain the high levels of inflammation experienced during the recovery period.
Last edited by JJH on Fri Mar 13, 2020 2:14 pm, edited 1 time in total.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

beach sunrise
Posts: 64
Joined: Thu Mar 05, 2020 7:14 pm

Re: Pre and post surgery question

Postby beach sunrise » Mon Mar 09, 2020 3:51 pm

Hey JJH, I have all that info minus the genetics report. It was printed off for me today. I didn't look at it until we were on the road and it was the wrong report. But I do know I am MSI neg. So, Wednesday I will ask for it again and make sure its the right one. I didn't put all the other info in signature because I ran out of char space, lol. I'll figure it out and add to it. Thank you thank you!
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surgery Jan 2020 APR/colostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj FOLFOX6, cea 7
1st rd complete, 2nd 3/9/20
MHL1 +
PMS2+
MSH2+
MSH6+
Post surg chemo sensitivity testing at Nagourney Cancer Institute "Test failed due to neo-adj chemorad did its job. Not enough cancer cells to test." Good news cancer pretty much dead, bad news not knowing what chemo would work best for my cancer

beach sunrise
Posts: 64
Joined: Thu Mar 05, 2020 7:14 pm

Re: Pre and post surgery question

Postby beach sunrise » Mon Mar 09, 2020 3:58 pm

Hi Stu, thank you for the info input on CEA. Your opinion actually makes me feel better. CEA today was at 10, but I am on folfox and was told it can spike before lowering. I am going to look at some more data later also. Its like pulling teeth to get onc to give me a copy of anything. So frustrating.
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surgery Jan 2020 APR/colostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj FOLFOX6, cea 7
1st rd complete, 2nd 3/9/20
MHL1 +
PMS2+
MSH2+
MSH6+
Post surg chemo sensitivity testing at Nagourney Cancer Institute "Test failed due to neo-adj chemorad did its job. Not enough cancer cells to test." Good news cancer pretty much dead, bad news not knowing what chemo would work best for my cancer

JJH
Posts: 290
Joined: Mon Apr 24, 2017 7:26 am

Re: Pre and post surgery question

Postby JJH » Tue May 05, 2020 9:57 am

beach sunrise wrote:Hi All, been battling rectal cancer since Aug 2019. Neo-adjuvant chemorad 6 wks (5FU only for chemo). Clinical stage T3N0. Surgery 2 mths ago, path report T4bN1aM0, clear margins. My worry is CEA was 24 at surgery and now right before 1st adjuvant FOLFOX is still high 7.0. Inflammation levels are on high side also. I won't get genetic testing report until Monday, I will have to ask for it I guess as they haven't offered to tell me its in. I am worried since cea and inflammation is still high that maybe something was missed/not caught on scans I've had so far. Any thoughts?


beach sunrise wrote:I think same. Cancer is camping out somewhere but not detected on CTs, MRIs or PET. CRP was very high also so I went to see a nutritionalist and found out I am gluten sensitive, low testrostorone/estrogen and high cholerestrol. I am watching the gluten and noticed the CRP has went down 40 points in a week to 90 now. I feel like I am getting no answers I need and onc just says folfox will tell if we have managed the cancer. I will tell him tomorrow about the extra blood work I had 2 wks ago with the nutritionalist. He will likely not be happy with me but it is what it is.

Before you plan a trip all the way to MSK, you might want to consider getting a second opinion closer to home. One possibility is the nationally ranked City of Hope Comprehensive Cancer Center, where they have an excellent colorectal cancer program as well as an excellent liver cancer program. They also do Hepatic Arterial Infusion procedures if necessary.

City of Hope
https://www.cityofhope.org/clinical-program/colorectal-cancer/colorectal-cancer-treatments
https://www.cityofhope.org/clinical-program/colorectal-cancer/colorectal-cancer-care-team
https://www.cityofhope.org/clinical-program/liver-cancer

If you were to get a Second Opinion there with one of their liver specialists, you might be able to get some insight into what is causing the rise in your CEA, and this might help reduce your current anxiety. Their multidisciplinary team of specialists might also be able to comment on possible abnormalities in your liver, such as hepatic steatosis (fatty liver disease) or something else.

Second opinions at City of Hope
https://www.cityofhope.org/patients/making-your-first-appointment/the-second-opinion-you-deserve

beach sunrise
Posts: 64
Joined: Thu Mar 05, 2020 7:14 pm

Re: Pre and post surgery question

Postby beach sunrise » Tue May 05, 2020 1:34 pm

Thank you, JJH! I just read a lil about them. Never heard of them before. Very Impressive. I will put it in my notes for sure. It would be a farther trek but hey, whats your life worth! Thanks again!
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surgery Jan 2020 APR/colostomy, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
presurg cea 24/post 5.9
Adj FOLFOX6, cea 7
1st rd complete, 2nd 3/9/20
MHL1 +
PMS2+
MSH2+
MSH6+
Post surg chemo sensitivity testing at Nagourney Cancer Institute "Test failed due to neo-adj chemorad did its job. Not enough cancer cells to test." Good news cancer pretty much dead, bad news not knowing what chemo would work best for my cancer


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: TestTheyDontStop and 38 guests