29F. Just got a colonoscopy. They found something and I’m scared.

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Jacques
Posts: 600
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: 29F. Just got a colonoscopy. They found something and I’m scared.

Postby Jacques » Fri Jul 16, 2021 1:48 pm

I agree with roadrunner. Now, just wait for the CT scan report. Everything hinges on that outcome.

Let us know what you find out.

boxhill
Posts: 730
Joined: Fri Apr 06, 2018 11:40 am

Re: 29F. Just got a colonoscopy. They found something and I’m scared.

Postby boxhill » Fri Jul 16, 2021 3:49 pm

So did the surgeon tell you where the mass is? Is it in the sigmoid colon or the rectum? If it is cancer, this is likely to make a significant difference in the treatment options you may end up considering, including your choice of surgeon.

I agree with roadrunner regarding research. I'm another who wanted to find out as much as possible. I tried to combine that with a mindset that I wasn't going to freak out about anything I read, especially before I knew whether it applied to me or not. The type of "information" that is most likely to be inaccurate is survival statistics. They are almost universally based on out of date information, not reflecting the latest treatment options. That's the one thing I would avoid like the plague.

The waiting is the hardest part. We all feel for you.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
All MRIs NED

roadrunner
Posts: 131
Joined: Sun Jan 12, 2020 8:46 pm

Re: 29F. Just got a colonoscopy. They found something and I’m scared.

Postby roadrunner » Fri Jul 16, 2021 8:09 pm

Just to underline Boxhill’s perspective on survival statistics: Not only do these percentages reflect older information, but the easiest ones to find—or worse, the ones that are “generally known”—are very high level, whereas cancer is almost perfectly individual. So while a certain percentage of *all* Stage 4 patients may be alive in 5 years, for example, a much, much higher percentage of patients with an isolated, resectable pulmonary metastasis (still Stage 4) will be. The same goes for certain genetic profiles, even where there is greater disease burden. And then there are better and worse chemo responders, which is a distinction that often cannot be made until after chemo is delivered. That is one of the reasons research can be very helpful, if approached in the right way, knowing one’s capacity for negative vs. positive thinking, one’s ability to process complicated information, and even to process (at least at a basic level) math and statistics. And if all or some of those things seem daunting, the collective wisdom of posters on this board can help, too.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; multiple biopsies negative
TAE 11/20, small amount of tumor removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
Stable in 6/28 scan.

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Jacques
Posts: 600
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: 29F. Just got a colonoscopy. They found something and I’m scared.

Postby Jacques » Sat Jul 17, 2021 10:36 am

T&T -

You need to post more messages with more details. There are 2 main protocols for CRC: Rectal, and Colon, and they are different.

We need to know at least where the mass is located because the treatment protocols are so different for Rectal and Colon.

TiredandTroubled
Posts: 22
Joined: Sat Jul 10, 2021 7:11 am

Re: 29F. Just got a colonoscopy. They found something and I’m scared.

Postby TiredandTroubled » Sat Jul 17, 2021 3:44 pm

Thank you everyone. Sharing another update:

The nurse called me to review the CT scan results and said they did not see anything in my liver or lungs (a huge relief). However, they also said they couldn’t even see the mass in my colon? (Which is definitely there…) should I be concerned? Can I finally breathe easy that it’s not stage 4?

They also said it appears my gallbladder is collapsed (but that’s unrelated apparently…)

Lastly, they finally told me my CEA level is 16.

I still don’t have my biopsy results and I’m going to call confirm where in my colon the mass is tomorrow.
29F DX 7/19
CC Sigmoid Colon
Size: 7CM
CEA before surgery: 16

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horizon
Posts: 1623
Joined: Tue Apr 12, 2011 10:10 pm

Re: 29F. Just got a colonoscopy. They found something and I’m scared.

Postby horizon » Sun Jul 18, 2021 10:48 am

TiredandTroubled wrote:However, they also said they couldn’t even see the mass in my colon? (Which is definitely there…) should I be concerned?


I know close to nothing about what masses are like but I do remember hearing mine was a flat, sessile mass. I wonder if that's the case.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 10 years NED). Is this real life?

Rock_Robster
Posts: 575
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: 29F. Just got a colonoscopy. They found something and I’m scared.

Postby Rock_Robster » Sun Jul 18, 2021 9:29 pm

TiredandTroubled wrote:Thank you everyone. Sharing another update:

The nurse called me to review the CT scan results and said they did not see anything in my liver or lungs (a huge relief). However, they also said they couldn’t even see the mass in my colon? (Which is definitely there…) should I be concerned? Can I finally breathe easy that it’s not stage 4?

They also said it appears my gallbladder is collapsed (but that’s unrelated apparently…)

Lastly, they finally told me my CEA level is 16.

I still don’t have my biopsy results and I’m going to call confirm where in my colon the mass is tomorrow.

This is all “good” news, under the circumstances!

Nothing in the liver or lungs is fantastic news.

In my experience a CT scan does not image the colon particularly well, so it might not be so surprising that it didn’t show up. However this might also suggest that it isn’t so large/obstructive, which is a good thing. The colonoscopy and biopsy is gold standard for diagnosing this anyway, so best to go off that.

A CEA of 16 is elevated but not grossly so, which is also prognostically good (mine was 14 at diagnosis as stage IV). Some people don’t elevate at all, some are in the 10,000s.

Also thankfully we don’t need a gallbladder (mine was removed with my liver surgery and I’ve never noticed), but might be interesting to ask what they propose to do with that - if anything.

Best of luck for the next steps, hope you continue to get good news.

Rob
39M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1, Dec-20: 2.3, Mar-21=2.5, Jul-21=3.1
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection
02/20 Ileo reversed
03/20 NED (CT/PET/MRI/scope) - latest scans Jul-21

TiredandTroubled
Posts: 22
Joined: Sat Jul 10, 2021 7:11 am

Re: 29F. Just got a colonoscopy. They found something and I’m scared.

Postby TiredandTroubled » Tue Jul 20, 2021 6:06 am

Update: got the results of the biopsy and it is indeed cancer.

I’m scheduled to get surgery next week and terrified that it’s going to be late stage (the only reason I think that is because of the size— 7cm)

I’m starting to think I can’t do this.

Does the size correlate to the stage?
29F DX 7/19
CC Sigmoid Colon
Size: 7CM
CEA before surgery: 16

aquarian_asian
Posts: 2
Joined: Wed Jul 07, 2021 7:07 am

Re: 29F. Just got a colonoscopy. They found something and I’m scared.

Postby aquarian_asian » Tue Jul 20, 2021 8:36 am

Your medical team would have done urgent staging by the time now (that is what has been done to me in UK)

Don't worry too much at the moment, it happened unfortunately - but getting surgery this fast is good in a way. Get all medical facts/records as much as you can to understand your staging, treatment plans, treatable/curable state etc. Even I could see lot stage IV survivors here. With medical advancements and treatments - keep up your high hopes and hold on. I am not that experienced as other folks here ;

my quick stats for all (i will update my signature later)

Diagnosed on 9th Feb 21 - Rectum cancer
After set of MRI, CT scans - my staging was III b (very anxious time due to lot waiting time, misunderstanding over phone conversation etc)
Pre-surgery radiotherapy in April'21 end (1 week - 5 mins a day x 5 days)
LAR Surgery was done in May 2021 (Tumor is removed with R0 status, Moderate G2)
3 months chemo (CAPOX) cycle started (2 completed with some side effects)

Cheers

catstaff
Posts: 101
Joined: Wed Mar 03, 2021 11:37 am

Re: 29F. Just got a colonoscopy. They found something and I’m scared.

Postby catstaff » Tue Jul 20, 2021 9:06 am

Any correlation with size and stage is just a tendency so you can't really predict from the size. Also radiographic sizing is reasonably but not precisely accurate. The tumor (T) stage is determined by whether it has penetrated beyond the inner lining of the colon or rectum, and if so how far, and if it's broken out of the colon completely, whether it has adhered to or invaded any nearby organs. Bigger tumors may be more likely to be invasive but it's not necessarily so. They generally try to stage it clinically (i.e. through the CT) initially so I suppose they haven't told you anything about that.
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-

TiredandTroubled
Posts: 22
Joined: Sat Jul 10, 2021 7:11 am

Re: 29F. Just got a colonoscopy. They found something and I’m scared.

Postby TiredandTroubled » Tue Jul 20, 2021 9:46 am

catstaff wrote:Any correlation with size and stage is just a tendency so you can't really predict from the size. Also radiographic sizing is reasonably but not precisely accurate. The tumor (T) stage is determined by whether it has penetrated beyond the inner lining of the colon or rectum, and if so how far, and if it's broken out of the colon completely, whether it has adhered to or invaded any nearby organs. Bigger tumors may be more likely to be invasive but it's not necessarily so. They generally try to stage it clinically (i.e. through the CT) initially so I suppose they haven't told you anything about that.


They weren’t even able to see it on the CT scan (is that worrying in and of itself?) but from the colonoscopy I know it is approx 7cm- which sounds huge compared to others I’ve read, hence the anxiety.
29F DX 7/19
CC Sigmoid Colon
Size: 7CM
CEA before surgery: 16

DCook54
Posts: 27
Joined: Sat Sep 05, 2020 10:12 pm

Re: 29F. Just got a colonoscopy. They found something and I’m scared.

Postby DCook54 » Tue Jul 20, 2021 10:12 am

Now you have to make some decisions. As devastating as this news is, there is so much hope for treatment of this disease. Please make sure you find a team of doctors who work together for your cure. If you don't think something makes sense, ask questions until you understand. Don't be afraid to seek another opinion. Research and be ready with questions when you have appointments. Be gentle with yourself when you need to, but be ready to fight! Keeping you in my thoughts and prayers!
54 year old mom of 3 grown children and grandmother of 3
Stage IV colon with mets to lungs
KRAS G12V
NRAS Wild
Dec 2019- partial colectomy to remove mass adenocarcinoma 0/31 Lymph nodes positive
Jan 2020-PET showed NED
Jan 2020- Staged at I
July 2020-Ct shows nodules both lungs
July 2020-VATS both lungs positive crc mets Stage IV
August 2020 began 1/6 cycles Folfox
Nov 20 Completed 6 Folfox
Dec 20 Colonoscopy Clean, CTs clean
Dec 20 NED
April 21 Stable scans.one 4 mm lung nodule to watch

roadrunner
Posts: 131
Joined: Sun Jan 12, 2020 8:46 pm

Re: 29F. Just got a colonoscopy. They found something and I’m scared.

Postby roadrunner » Tue Jul 20, 2021 10:39 am

I am sorry you got this news.

That said—and I recognize this may sound a little discordant right now—based on what you have shared so far, your situation appears good and there seems to be a high likelihood of a full and complete recovery. The key is what Rock Robster said above. Your initial scans showed no metastasis, meaning no spread beyond the primary site (and colon cancer usually spreads first to the liver). When you say you are terrified the cancer will turn out to be “late stage,” that—metastasis—is the real concern. Colon cancer that hasn’t spread is usually comparatively simple to treat and has a very high cure rate. An example of what seems most likely to be your story, at this stage at least, is former US baseball star Eric Davis. He had a very large malignant tumor in his colon removed and returned to baseball at 100% the next season. That was in the ‘80s or ‘90s I believe, and he never looked back.

Now, when I said “comparatively simple” above, I totally understand that you are comparing it to being a healthy 29-yr.old, not the situations of many folks who post here (including me!). There can, of course, be surgical challenges, and I think you may end up doing chemo post-surgery (to wipe out any microscopic cancer that may in fact have escaped (scans aren’t always perfect)). Chemo is no fun, as many on here (again me as well) can attest, and requires careful management, but you are young and (presumably) strong, and will likely come through fine. So this is all very hopeful.

There are some things to think about, for sure. You’re about to have surgery. Do you like your surgeon? Is your surgeon board certified in colorectal surgery? What has he or she said about the type of surgery/recovery? Do they expect to do adjuvant chemotherapy? Given your age, do you have concerns about having kids (there’s a thread about this right now—I wouldn’t let it scare you but it’s potentially worth discussion with the surgeon and oncologist in your case)? Also given your age, have they done genetic testing? (Some people have a genetic predisposition to colorectal cancer). Also, it might be worth posting the specific pathology results, as those would show a lot about your prognosis: was this a “moderately well-differentiated adenocarcinoma” (the most common type), or something different? The more information you post, the more people will be able to contribute. Jacques said this above, and he’s right. Information will be your friend in navigating this journey, and this site is a great place to get information and perspective.

So yeah. This sucks big time. But so far all your vectors are pointing the right way so far. And it’s very tough to jump into surgery and recovery, but I hope you can see it as curative now, as it appears to be—a tough spot that you will get through to a bright future. Good luck!
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; multiple biopsies negative
TAE 11/20, small amount of tumor removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
Stable in 6/28 scan.

boxhill
Posts: 730
Joined: Fri Apr 06, 2018 11:40 am

Re: 29F. Just got a colonoscopy. They found something and I’m scared.

Postby boxhill » Tue Jul 20, 2021 8:37 pm

TiredandTroubled, you still haven't said where the tumor is!! Surely by this point you know whether it is in your rectum or colon, or on the border. What kind of surgery are you having? It is virtually impossible for anyone to give you useful advice without even the most basic information.

I'm sorry to sound irritated. But I am. 8) You remind me of my sister, who had surgery to remove cancer "somewhere" on the lower left side in 2013. She apparently had a blockage, as she was in quite a lot of pain and her surgery was quick. She had a temporary colostomy that was reversed about 3 months later. She doesn't know what stage she was, much less her TNM, and is unable to tell me where it was. I "think" it must have been in the sigmoid colon. All she knows is that it was confined to the colon. She never saw an oncologist. She did have thorough scans at first, and has had follow-up colonoscopies. (I'm tempted to tell her that recurrence in the colon is not what she should be worrying about, but I bite my tongue.) I'm assuming that it was either stage I or stage II. Her cancer was 5 years before mine, so I wasn't well informed at the time, unfortunately. She is one of those people who hates to acknowledge illness, much less talk about it. When it happened, I had to directly ask to determine whether "the tumor" was in fact cancer, since she didn't use the word.

I hope that you are also like my sister in that your tumor is early stage and doesn't require adjuvant chemo, and has a similarly good outcome. Good luck with your surgery, whether it is laparoscopic or open. The pathology will show you what is really going on, including whether your tumor has features that indicate that adjuvant chemo might be advisable.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
All MRIs NED

roadrunner
Posts: 131
Joined: Sun Jan 12, 2020 8:46 pm

Re: 29F. Just got a colonoscopy. They found something and I’m scared.

Postby roadrunner » Tue Jul 20, 2021 10:25 pm

TiredandTroubled wrote:Thank you everyone. Sharing another update:

The nurse called me to review the CT scan results and said they did not see anything in my liver or lungs (a huge relief). However, they also said they couldn’t even see the mass in my colon? (Which is definitely there…) should I be concerned? Can I finally breathe easy that it’s not stage 4?

They also said it appears my gallbladder is collapsed (but that’s unrelated apparently…)

Lastly, they finally told me my CEA level is 16.

I still don’t have my biopsy results and I’m going to call confirm where in my colon the mass is tomorrow.


Not trying to be more irritating, Boxill : ) I know your point was made with best intentions, and the more specific the better. But I think this post above confirms it’s in the colon, not the rectum. Admittedly, more specific information could be provided, but I, at least, thought this was enough to go on, at least for now, and given that surgery is imminent.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; multiple biopsies negative
TAE 11/20, small amount of tumor removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
Stable in 6/28 scan.


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