Feeling confused . What symptoms to watch for

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crikklekay
Posts: 65
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Feeling confused . What symptoms to watch for

Postby crikklekay » Sun Sep 02, 2018 12:06 am

OK so my DH just finished his last chemo treatment, CT scan was clear, CEA levels dropped back into normal range, only thing to watch right now are some elevated liver enzymes. Here is what our Oncologist has planned:

No need to do another CT Scan until next year unless something weird pops up. We’re to keep her updated with any possible symptoms that may point to lingering chemo side effects or worry areas like persistent gut cramping, issues with stool frequency/consistency/etc, breathing problems, weird pains in general, and so on. Blood work and follow up visits every three months to make sure everything is trending in the right direction.

Unfortunately I don’t think there is any definite way to know you have a reoccurrence or not, it will be a matter of paying attention to your body and acting on anything that seems out of the ordinary. We definitely plan to err on the side of caution and call the Oncologist with anything that causes concern. It bothers me too that we don’t have another scan set until August 2019, so we’re in the same boat.
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated w/invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6/22
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/ MSSA infected port, PICC line inserted, abdominal CT scan clear chest CT scan showed septic emboli & blood clots
03/18 Hospital w/ CDIFF
04/18 Chest CT scan clear
06/18 Colonoscopy Clear
08/18 CT Scan Clear, NEMD

Hopegirl
Posts: 43
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Re: Feeling confused . What symptoms to watch for

Postby Hopegirl » Mon Sep 03, 2018 1:01 am

Thank you Crikklekay for the information. Sigh just hate always wondering the what if’s
Diagnosed 10/11/17 at 46 years old . Now 47. 4 kids 26,22,12,10
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
8-7-2018 Cea 0.7
11-13-2018 Clear Scan
11-13-2018 Cea 1.4
Pray for NED Always

Pray for NED always

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O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: Feeling confused . What symptoms to watch for

Postby O Stoma Mia » Mon Sep 03, 2018 10:17 am

Hopegirl wrote:I’m sorry but I have another question. How can I tell if I have reoccurrences or not? ...

I think that the first person to ever know if you have a recurrence would be the technician who does your CT scans every 6 months, not you. The CT scan is the procedure generally used to confirm the presence of a recurrence. I don't think that you would be able to tell on the basis of any symptoms, because I don't think you would have any symptoms before the next CT scan.

The literature on colorectal cancer recurrence shows that, in general, most CRC patients in the 5-year surveillance period do not have any symptoms at all from a metastasis before the CT scan that initially confirms the met's presence. The newly formed metastasis is so small at the very beginning that it is unlikely to cause any kind of problem or symptom. The noticeable symptoms of a recurrence usually come much later, after a met has increased greatly in size and has begun to interfere with other organ functions.

You are now in the 5 year surveillance period under a schedule that requires a CT scan every 6 months. This schedule is an aggressive monitoring schedule, with scans done twice as frequently as scans recommended for persons at ordinary risk for a recurrence. With your scans this frequent, it is unlikely that a met occurring within a short 6 month time frame could become large enough to cause any noticeable problem, unless you had a particularly aggressive type of cancer. Nonetheless, you should always monitor your own health and report to your doctor any new and persistent changes in your health.

There are two main kinds of recurrence, local and distant.

  • Local recurrences are ones that occur near the place where the original tumor was located. This type of recurrence is not usually called a metastasis, however. Rather, it is usually an extension of the original tumor that probably emerged because of poor surgical procedure in removing the original tumor. If the surgeon did not remove all of the cancer of the original tumor (for example, if there were involved margins in the resected specimen), then a residual cancer will eventually emerge and grow large enough to be noticed on a CT scan. Local recurrences, if they do occur, usually occur within 2 years of surgery.
    .
  • Distant recurrences are ones that occur in remote places like the liver, lungs, or in the peritoneum.They are the recurrences that are usually termed metastases (mets). They can occur at any time, even years after the original surgery. They originate from circulating tumor cells or micro-metastases that have traveled to remote places and that eventually develop into large metastases, often when systemic inflammation in the body has increased markedly due to very poor diet or long-term sedentary lifestyle (lack of exercise). Whether the recurrence appears in the liver or in the lungs or somewhere else usually depends on where the original tumor was located and how close the tumor was to the main lymphatic vessels going either to the liver or to the lungs or elsewhere.


While it is unlikely that you will have symptoms alerting you to a new met, it is always possible that a new met is located in such an awkward place that it will start causing problems even while it is small. Also, a local recurrence located at or near the anastomosis join could cause some inflammation, pain or narrowing of the anastomosis and generate problems with normal bowel movements. So, it always pays to be alert to any new, and persistent changes in your health, just in case.

By the way, did you have a CEA tumor-marker test done before your surgery? If so, was it in the abnormal range? As of now, all of your post-treatment CEAs have been in the normal range. It would be interesting to know if your CEA was also normal before your surgery. If so, this would suggest that CEA is not a particularly good marker for you, since, in that case, it did not fluctuate up and down according to the amount of cancer you had in your body.
Last edited by O Stoma Mia on Tue Sep 04, 2018 8:06 am, edited 2 times in total.

Hopegirl
Posts: 43
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Re: Feeling confused . What symptoms to watch for

Postby Hopegirl » Tue Sep 04, 2018 2:35 am

Thank you Stoma Mia for this information. No I did not have Cea done before my surgery. I didn’t even know that I was suppose to check my Cea first . It happened so fast and My surgeon didn’t even do it . When I first saw my uncologist , he was wondering the same thing too why they didn’t check my Cea first before surgery . I guess I’ll never know what it was before surgery :(
Diagnosed 10/11/17 at 46 years old . Now 47. 4 kids 26,22,12,10
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
8-7-2018 Cea 0.7
11-13-2018 Clear Scan
11-13-2018 Cea 1.4
Pray for NED Always

Pray for NED always

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susie0915
Posts: 864
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Feeling confused . What symptoms to watch for

Postby susie0915 » Tue Sep 04, 2018 7:36 am

I didn't have my CEA checked until after I finished chemo/radiation before surgery. It was less than .5, but since I had a good response to the chemo/radiation I don't know if it is a marker for me. I that was left after preadjuvant therapy was scar tissue, I wish it would've been drawn before chemo/radiation and I may have some type of indication if it is a marker.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

User avatar
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Systemic inflammation monitoring

Postby O Stoma Mia » Tue Sep 04, 2018 8:28 am

If you're interested in having some sort of early warning system that monitors systemic inflammation (as a precursor to possible metastasis onset), you might want to look into the research on that topic and on the various blood tests that might be able to track elevations in systemic inflammation. These kinds of tests are not usually covered by insurance, however, so you may just have to pay for them on your own if you are interested in setting up this kind of Do-It-Yourself monitoring.

See the post below for more information:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53631&p=425508#p425508

Hopegirl
Posts: 43
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Re: Feeling confused . What symptoms to watch for

Postby Hopegirl » Fri Sep 07, 2018 1:09 am

Feeling sad and depressed right now all of a sudden. Sigh probably because thinking about colonoscopy procedure next month and next scan in November. When will I ever feel less stressed. Sorry just needed to vent a little
Diagnosed 10/11/17 at 46 years old . Now 47. 4 kids 26,22,12,10
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
8-7-2018 Cea 0.7
11-13-2018 Clear Scan
11-13-2018 Cea 1.4
Pray for NED Always

Pray for NED always

User avatar
susie0915
Posts: 864
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Feeling confused . What symptoms to watch for

Postby susie0915 » Fri Sep 07, 2018 7:19 am

I understand. I always feel sad and stressed when test time and appointments come up. I will be 3 years NED on September 9. I am hoping it continues to get easier as time goes on. Not a day goes by that I don't think of cancer though.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

Hopegirl
Posts: 43
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Re: Feeling confused . What symptoms to watch for

Postby Hopegirl » Mon Sep 10, 2018 1:29 am

ME TOO susie0915. Not a day goes by I don’t think about my disease :( every little symptoms I get scared , and every little sharp pains I get sends me to high anxiety. It’s a lot of what if’s
Diagnosed 10/11/17 at 46 years old . Now 47. 4 kids 26,22,12,10
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
8-7-2018 Cea 0.7
11-13-2018 Clear Scan
11-13-2018 Cea 1.4
Pray for NED Always

Pray for NED always


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