Colon Cancer Three Years After Colonoscopy

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AdAstra
Posts: 5
Joined: Mon Sep 20, 2021 5:41 pm

Colon Cancer Three Years After Colonoscopy

Postby AdAstra » Wed Sep 22, 2021 5:41 pm

Hi, everyone.

I'm writing about my mom, who was diagnosed with colon cancer last week, nearly six months after her saga began. I'll try to keep this short-ish, but here's her story: In late March, she started dealing with bothersome constipation and stomach cramps. After a week or two, it was so bad that she was doubled over and moaning in pain. We originally thought she was dealing with IBS or even appendicitis, but she started having bladder symptoms such as pain and burning when she urinated. She kept saying she felt like something was pulling in her groin area. She saw her PCP, who prescribed an antibiotic for a UTI, and oddly enough, her intense stomach cramps cleared up nearly overnight after taking the medication.

Nevertheless, she went back to having IBS-type symptoms, and in menopausal women, symptoms like that can signify ovarian cancer, so she saw her gynecologist, who felt a cyst/mass when he did a pelvic exam. He ordered an ultrasound, which showed an echogenic mass with internal vascularity near her bladder. We still thought we might be dealing with ovarian cancer, so the doctor ordered an MRI in late May. The scan showed a complicated cystic mass with a fluid-fluid level right near where her right ovary would be, so she was then referred to a gynecologist oncologist. The oncologist scheduled surgery to remove the presumptive mass in mid-July, and in the meantime, she was seen by a urologist to deal with the bladder issues and to rule out bladder cancer. It was around this time that she had a CT scan and an apple core lesion was seen in her cecum. Of course, a colonoscopy was scheduled, and a large mass was found in her cecum near the ileocecal valve. The GI doc who did the procedure said the mass looked strange and not like colon cancer usually looks, so she made sure to take a lot of biopsy samples. We were relieved when the samples -- even deeper level samples -- came back as tubular adenoma.

Thankfully, June and July weren't too bad for her pain wise, but things were a bit rough again in August and September. The intense pain came back, as did the bladder symptoms. We strongly suspected she had a fistula because she'd have constant bacterial UTIs, along with air coming out when she urinated and bladder pain/pressure. Her cystoscopies showed irritation on the right side of her bladder. She even did the poppy seed test, and she passed poppy seeds in her urine, thus confirming the fistula.

Anyway, to wrap things up, because of the size of the mass (> 5 cm) and because her gynecological surgery showed her ovary was stuck to her colon, she was referred to a colorectal surgeon, who recommended a right hemicolectomy. So after doctor visits in the double digits, an ultrasound, an MRI, a CT scan, cystoscopies, a colonoscopy, gynecological surgery, and several red herrings, she finally had her surgery last week. Unfortunately, the surgeon confirmed colon cancer, as she had a T4 tumor that was adhering both to her ovary and to her abdominal wall. Apparently, it was the size of a baseball and had perforated her bowel. It also had been pressing on her bladder. She'll need to have chemo even if her cancer is only stage II due to her high risk tumor.

Needless to say, she's had some bad luck, with one rarity after the other: She grew a pretty large T4 tumor three years after a colonoscopy (granted, presumably benign sessile polyps were removed from the same area during that 2018 colonoscopy); she presented with a fistula; and she had a false negative biopsy. I keep wondering what other piece of bad news we'll receive. I'm a wreck waiting for her pathology results, and I keep worrying that she'll have a rare type of colon cancer with a horrible prognosis, like a neuroendocrine carcinoma or a signet ring carcinoma. Yet another rarity to add to our collection of bad news!

I apologize for the length of this post, and I hope y'all don't mind if I ask a few questions:

1. If you've had colon cancer between colonoscopies, what size was your mass? Did you have an especially aggressive tumor? I'm really curious to hear your story.

2. Does a large T4 tumor three years after a colonoscopy mean her cancer will be more likely to be high grade/poorly differentiated?

3. How quickly do aggressive tumors metastasize to other organs? She had her CT scan in late June, and her liver was fine then. Her lymph nodes looked okay, too, but you can't always tell.

4. I know we've got quite the journey ahead of us, so what's your advice for us, if you don't mind my asking? This is all so new and overwhelming.

If you've read this far, thank you so much. I've been lurking this forum for a month or so, and reading here has brought me a lot of comfort.
Caregiver to Mom (63)

-Symptoms since March 2021
-CT in June 2021 showed a mass in cecum. No mets seen then.
-Colonoscopy in July 2021 confirmed large mass. Biopsy showed tubular adenoma.
-Right hemicolectomy on 9/17/21; 5 cm x 4.5 cm tumor removed from cecum.
-Pathology came back as a poorly to moderately differentiated ulcerated adenocarcinoma.
-Current (tentative) staging: T4aN0Mx.

catstaff
Posts: 165
Joined: Wed Mar 03, 2021 11:37 am

Re: Colon Cancer Three Years After Colonoscopy

Postby catstaff » Thu Sep 23, 2021 7:35 am

My husband had a routine screening colonoscopy (his first) in 2015 which found nothing but inflammation, not even any polyps. In the summer of 2019 he started to experience a "change in bowel habits" (one of those warning signs!) and after being misdiagnosed with hemorrhoids, finally was sent to the emergency department when he started having blood dumps in early fall of that year. The MRI showed a T4b tumor that had invaded the left seminal vesicle and possibly the prostate. They ended up removing his entire genitourinary tract there along with the tumor the following summer. So yes, they can come up very quickly.

His was a G3 (though apparently still conventional adenocarcinoma) but I don't want to speculate about your mother's case based only on that.

I have some understanding of how you are feeling. We started out being told it was "maybe" Stage II at worst based on initial imaging, then at each image (MRI, PET) the news got worse. The PET confirmed some suspicious distal lymph nodes so Stage IV. The biopsy also said it was G2 and the surgical specimen was G3. I will note that tumor grading can be somewhat subjective on the part of the pathologist, since it's based on fraction of cells with a certain appearance so they have to estimate that.

I don't think there's an answer to your question about spread since the whole subject isn't particularly well understood (why do some cancers spread early and others don't, why do they favor some organs, etc.)

Did they check her CEA yet?
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

AdAstra
Posts: 5
Joined: Mon Sep 20, 2021 5:41 pm

Re: Colon Cancer Three Years After Colonoscopy

Postby AdAstra » Thu Sep 23, 2021 6:26 pm

Thanks for your response, catstaff. I'm sorry to hear about your husband's situation. Will they be able to remove his affected lymph nodes?

My mom hasn't had her CEA tested yet. Back in May when the doctors thought we might be looking at ovarian cancer, they tested her CA-125, which was slightly elevated at 37 (normal is < 35). They also tested her AFP (0.8 ng/ml) and her HCG (3 mIUnit/mL) tumor markers, both of which came back normal.

Her pathology results came back today, and it seems she had inflammation and even an abscess in her peritoneum, though there were no cancer cells detected there (from the report: "Marked acute inflammation, predominantly neutrophils (abscess), consistent with peritonitis"). Apparently, the tumor was 5 cm x 4.5 cm and was classified as a poorly to moderately differentiated ulcerated adenocarcinoma. In the end, the pathologist listed it as moderately differentiated. There also wasn't any cancer in the 17 lymph nodes they tested, so I'm happy about that. She also had clean margins. Her tumor seems to be pretty high risk, though, so I'm sure she'll need chemo all the same, especially if there's a chance of microscopic peritoneal spread via inflammation.

All that said, I'm happy there was at least some good news today, though I'm sure I'll be extremely nervous when it comes time for her PET scan.
Caregiver to Mom (63)

-Symptoms since March 2021
-CT in June 2021 showed a mass in cecum. No mets seen then.
-Colonoscopy in July 2021 confirmed large mass. Biopsy showed tubular adenoma.
-Right hemicolectomy on 9/17/21; 5 cm x 4.5 cm tumor removed from cecum.
-Pathology came back as a poorly to moderately differentiated ulcerated adenocarcinoma.
-Current (tentative) staging: T4aN0Mx.

catstaff
Posts: 165
Joined: Wed Mar 03, 2021 11:37 am

Re: Colon Cancer Three Years After Colonoscopy

Postby catstaff » Fri Sep 24, 2021 12:52 pm

If it was a perforating tumor then that certainly could cause peritonitis (and a lot of pain).

The grading of the tumor is somewhat subjective on the part of the pathologist, since most are a mix of types. I think the criterion for G2 versus G3 is half or more poorly differentiated cells gives the overall G3, but if it's close to half I can see where it could be graded either way depending on the pathologist. (I don't know about the criterion for G1 versus G2, I assume it's similar, but few colorectal tumors are G1 even if early.)

I think there's no question this is a high-risk tumor and she'll need chemo. Did the pathology report mention anything about budding, or tumor deposits (which are not lymph nodes so would not be counted among them)?

Some members here have or had retroperitoneal lymph nodes removed, but a lot of places are reluctant to do that on the grounds it doesn't help, and indeed in at least a couple of cases I saw, either another lymph node or an entirely new set of mets appeared after the surgery. We think the chemo has resolved those nodes for my husband, however.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

AdAstra
Posts: 5
Joined: Mon Sep 20, 2021 5:41 pm

Re: Colon Cancer Three Years After Colonoscopy

Postby AdAstra » Fri Sep 24, 2021 4:12 pm

catstaff wrote:If it was a perforating tumor then that certainly could cause peritonitis (and a lot of pain).


Yeah, when this first started, she had times when she'd be doubled over in pain. We thought it was maybe diverticulitis or appendicitis. She had another episode of this intense pain in August as well. The funny thing is, the worst of her pain would clear up when she was prescribed an antibiotic for a UTI. Even when her pain wasn't intense, she always felt like there was something there near her bladder. She'd have fistula symptoms, too, which was awful.

I think there's no question this is a high-risk tumor and she'll need chemo. Did the pathology report mention anything about budding, or tumor deposits (which are not lymph nodes so would not be counted among them)?


No, it didn't say anything about that. It did say there was lymph vascular invasion, though, but thankfully, no perineural invasion and no tumor deposits.

I'm really worried about invasion of the peritoneum given that she had so much inflammation and likely microscopic bowel perforation. The pathologist didn't see any gross perforation, but I'd imagine there must've been at some point since she had a fistula. There are no tumor deposits seen currently, though, thankfully. Her tumor was adhering to her omentum, so she had an omentectomy; the pathology report said there were lots of adhesions, chronic inflammation, and reactive mesothelial cells. She also had her pelvic washings tested in July when she had gynecological surgery (which is when they saw that colon was stuck to her right ovary), and thankfully, they came back negative as well.

We think the chemo has resolved those nodes for my husband, however.


I'm very glad to hear that! :)
Caregiver to Mom (63)

-Symptoms since March 2021
-CT in June 2021 showed a mass in cecum. No mets seen then.
-Colonoscopy in July 2021 confirmed large mass. Biopsy showed tubular adenoma.
-Right hemicolectomy on 9/17/21; 5 cm x 4.5 cm tumor removed from cecum.
-Pathology came back as a poorly to moderately differentiated ulcerated adenocarcinoma.
-Current (tentative) staging: T4aN0Mx.

DarknessEmbraced
Posts: 3651
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Colon Cancer Three Years After Colonoscopy

Postby DarknessEmbraced » Sat Sep 25, 2021 8:26 am

I'm sorry your Mom's diagnosis and that she's having such a hard time. *hugs8 I hope you will get more information soon.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

AdAstra
Posts: 5
Joined: Mon Sep 20, 2021 5:41 pm

Re: Colon Cancer Three Years After Colonoscopy

Postby AdAstra » Tue Sep 28, 2021 1:50 pm

Thank you, Darkness.
Caregiver to Mom (63)

-Symptoms since March 2021
-CT in June 2021 showed a mass in cecum. No mets seen then.
-Colonoscopy in July 2021 confirmed large mass. Biopsy showed tubular adenoma.
-Right hemicolectomy on 9/17/21; 5 cm x 4.5 cm tumor removed from cecum.
-Pathology came back as a poorly to moderately differentiated ulcerated adenocarcinoma.
-Current (tentative) staging: T4aN0Mx.


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