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

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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 10:29 pm

TiredandTroubled: It is a really good idea to figure out how to do a signature with specific details (or as specific as you can do (and fit within the character limit!)). It’s not too hard. This will really help the folks on here cut to the chase.
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.

Punky44
Posts: 484
Joined: Mon Oct 01, 2018 4:29 pm

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

Postby Punky44 » Tue Jul 20, 2021 11:35 pm

Hi!

Others have already given excellent advice but I will just chime in and say I have learned from others on this site when I was new here that the size doesn’t necessarily correlate with the stage. Try to familiarize yourself with the staging system of colon cancer (TNM)

https://www.cancer.org/cancer/colon-rec ... taged.html

It’s really great news that your M looks to be 0!

Wishing you the best of luck with surgery and next steps.
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1
Latest update: 6/28/21: Clear CT with CEA 3.1 (attributed to emphysema)

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

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 » Wed Jul 21, 2021 8:10 am

roadrunner wrote:TiredandTroubled: It is a really good idea to figure out how to do a signature with specific details (or as specific as you can do (and fit within the character limit!)). It’s not too hard. This will really help the folks on here cut to the chase.


Thanks Roadrunner. Just updated with what I know so far.
29F DX 7/19
CC Sigmoid Colon
Size: 7CM
CEA before surgery: 16

User avatar
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 » Wed Jul 21, 2021 3:39 pm

TiredandTroubled -

Thanks for creating a signature. This will help in the long run to allow members here to understand your situation at a glance, especially if you keep your signature up to date as new information comes in.

I have some comments on your initial signature, however. Given that your surgery is scheduled as soon as next week, I would say that there are some important items that should already be in the signature right now but are not there. The missing items (in my opinion) are:

  • Specific type of cancer, e.g., adenocarcinoma, etc.
  • Grade of tumor, e.g., G1, G2, G3, or G4, depending on level of differentiation detected
  • Estimated T-value of the tumor on the TNM scale, e.g., T1, T2, T3, or T4, depending on the estimated depth of tumor invasion into or through the colon wall, as seen from the preliminary scans. By this point in time the surgeon should at least know whether the tumor has grown through the colon wall or not, and maybe should have also done an MRI to see the tumor outline in greater detail.
  • Estimated N-value of local lymph node involvement on the TNM scale, e.g., N0, N1, or N2, depending on how many enlarged lymph nodes were detected on the preliminary abdominal CT scan. Given that your baseline CEA is 16, this strongly suggests that there is local lymph node involvement, i.e., either N1 or N2. In any event, the surgeon should already have an idea of how complicated the surgery will be and how difficult it will be to obtain clear surgical margins all around.
  • Estimated stage, based on estimated TNM scale, e.g., Stage 1, Stage 2, or Stage 3 (assuming that M-value is M0, thereby excluding Stage 4)
  • Type of surgical procedure - Several types of surgery are available for dealing with masses in the sigmoid colon, but your signature does not mention which type of procedure will be used.
  • Precise location in the sigmoid colon, i.e., whether the mass is in the lower part of the sigmoid colon near the recto-sigmoid junction, or in the upper part of the sigmoid colon far away from the recto-sigmoid junction.
  • MSI status - Since you already have the results from the IHC test with all 4 proteins being expressed normally, then your MSI status is pMMR (i.e., proficient mismatch repair) which is more or less equivalent to MSI status = MSS (i.e., microsatellite stable)
The fact that you have been given only a very sketchy description of what the mass really is and how aggressive or invasive it might be gives the impression that the surgeon is not really very concerned about details. There are some details (like how far down the lower cut will be made) that could be important for post-surgery recovery and quality of life. Also details about how much of the sigmoid colon the surgeon is planning to remove, e.g., left hemi-colectomy vs. sigmoid colectomy only.

Before you have surgery you will probably have to sign an Informed Consent form. Be sure that all of your questions regarding the surgery have been answered before you sign this form.

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 » Wed Jul 21, 2021 6:33 pm

Jacques wrote:TiredandTroubled -

Thanks for creating a signature. This will help in the long run to allow members here to understand your situation at a glance, especially if you keep your signature up to date as new information comes in.

I have some comments on your initial signature, however. Given that your surgery is scheduled as soon as next week, I would say that there are some important items that should already be in the signature right now but are not there. The missing items (in my opinion) are:

  • Specific type of cancer, e.g., adenocarcinoma, etc.
  • Grade of tumor, e.g., G1, G2, G3, or G4, depending on level of differentiation detected
  • Estimated T-value of the tumor on the TNM scale, e.g., T1, T2, T3, or T4, depending on the estimated depth of tumor invasion into or through the colon wall, as seen from the preliminary scans. By this point in time the surgeon should at least know whether the tumor has grown through the colon wall or not, and maybe should have also done an MRI to see the tumor outline in greater detail.
  • Estimated N-value of local lymph node involvement on the TNM scale, e.g., N0, N1, or N2, depending on how many enlarged lymph nodes were detected on the preliminary abdominal CT scan. Given that your baseline CEA is 16, this strongly suggests that there is local lymph node involvement, i.e., either N1 or N2. In any event, the surgeon should already have an idea of how complicated the surgery will be and how difficult it will be to obtain clear surgical margins all around.
  • Estimated stage, based on estimated TNM scale, e.g., Stage 1, Stage 2, or Stage 3 (assuming that M-value is M0, thereby excluding Stage 4)
  • Type of surgical procedure - Several types of surgery are available for dealing with masses in the sigmoid colon, but your signature does not mention which type of procedure will be used.
  • Precise location in the sigmoid colon, i.e., whether the mass is in the lower part of the sigmoid colon near the recto-sigmoid junction, or in the upper part of the sigmoid colon far away from the recto-sigmoid junction.
  • MSI status - Since you already have the results from the IHC test with all 4 proteins being expressed normally, then your MSI status is pMMR (i.e., proficient mismatch repair) which is more or less equivalent to MSI status = MSS (i.e., microsatellite stable)
The fact that you have been given only a very sketchy description of what the mass really is and how aggressive or invasive it might be gives the impression that the surgeon is not really very concerned about details. There are some details (like how far down the lower cut will be made) that could be important for post-surgery recovery and quality of life. Also details about how much of the sigmoid colon the surgeon is planning to remove, e.g., left hemi-colectomy vs. sigmoid colectomy only.

Before you have surgery you will probably have to sign an Informed Consent form. Be sure that all of your questions regarding the surgery have been answered before you sign this form.


I signed the form today - I’m going to call the Dr. tomorrow and try to get more answers to these questions. They were not able to see the mass in the CT scan at all, they only have seen it from the colonoscopy/sigmoidoscopy.
They also couldn’t see any lymph nodes in the scan.

Where would the grade of tumor be listed? In my biopsy report it says:
“Superficial fragments of rectal mucosa with at least high grade dysplasia/intra mucosal carcinoma”

I did ask him if he knew the stage and he said he won’t know until it’s out and they see the lymph nodes.

He explained to me what is going to be done (remove a section of my colon and reattach the rectum to the rest) and that it’s going to be done laparoscopically by a robot. He outlined where he will cut in a diagram.

He is a board certified surgeon at MSK and has great reviews. Now I’m getting concerned? He answered a lot of my questions but I didn’t know he was supposed to give me such detail.
29F DX 7/19
CC Sigmoid Colon
Size: 7CM
CEA before surgery: 16

User avatar
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 » Wed Jul 21, 2021 9:38 pm

TiredandTroubled -

If you are going to be talking to the surgeon tomorrow, you could ask him about possible problems in future Quality of Life (QOL) related to "high ligation of the inferior mesenteric artery" which is one of the possible collateral damages caused by doing a sigmoid colon resection by robot. (Read the past posts by member chrisca above to see the details.)

kandj
Posts: 311
Joined: Sun Sep 27, 2015 11:29 am

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

Postby kandj » Wed Jul 21, 2021 10:34 pm

TiredandTroubled wrote:
Jacques wrote:TiredandTroubled -


He is a board certified surgeon at MSK and has great reviews. Now I’m getting concerned? He answered a lot of my questions but I didn’t know he was supposed to give me such detail.



Which doctor is it at MSK? my husband's colon surgeon was Dr. Paty and he is one of the best.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19 lung/adrenal gland recurrence 11/19
Adrenal ablation2/20 Robotic Assisted VATS 3/20 Xeloda again
9/2020 SBRT on Adrenal Met 2/2021 peripancreatic node zapped
into triple digit chemo rounds

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 » Wed Jul 21, 2021 10:59 pm

I don’t know if there’s a particular set of information that he’s “supposed to” give you. Jacques has suggested many good questions, but surgeons often have a basic “pitch,” and read the patient or respond to the patient’s questions for the rest. Given that your surgery is imminent, you may want to focus on some of what you deem to be the more important questions to go back with.

Jacques’ list is a good one, and I certainly think questions about recovery (duration/challenges) and potential risks are often good to ask. I do note one thing I’d ask about for sure: your biopsy appears to have failed to find adenocarcinoma, but instead only abnormal cells that may reflect what’s termed “stage 0” cancer—abnormal cells, to be sure, but ones that cannot spread. I believe that with a tumor this large it’s entirely possible that more serious disease was missed by the biopsy, but have your doctors told you that they expect to find cancer that can spread (e.g. adenocarcinoma) when they remove this? If not, you might want to ask about that.
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.

User avatar
ginabeewell
Posts: 506
Joined: Wed Oct 24, 2018 10:30 am

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

Postby ginabeewell » Thu Jul 22, 2021 12:50 am

Dr Paty did my colon resection, and he had me do a colonoscopy in his office during pre-surgical check in so he could see the mass himself. By that time, my chemo had cleared up everything in the colon! He did the resection anyway, and my recovery was the easiest of my three surgeries by far. I think my surgery was Thursday and I was cooking dinner by Tuesday. So if it is Paty - and probably holds for any MSK surgeon - you are in good hands!
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

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 » Thu Jul 22, 2021 2:56 am

kandj wrote:
TiredandTroubled wrote:
Jacques wrote:TiredandTroubled -


He is a board certified surgeon at MSK and has great reviews. Now I’m getting concerned? He answered a lot of my questions but I didn’t know he was supposed to give me such detail.



Which doctor is it at MSK? my husband's colon surgeon was Dr. Paty and he is one of the best.


Dr. Garcia Aguilar
29F DX 7/19
CC Sigmoid Colon
Size: 7CM
CEA before surgery: 16

DarknessEmbraced
Posts: 3607
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

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

Postby DarknessEmbraced » Thu Jul 22, 2021 7:11 am

I'm sorry you're going through this.*hugs* I hope that you won't have to wait long to talk to your doctor about your results. Waiting is hard!
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! :)

kandj
Posts: 311
Joined: Sun Sep 27, 2015 11:29 am

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

Postby kandj » Thu Jul 22, 2021 10:09 am

TiredandTroubled wrote:
He is

Dr. Garcia Aguilar


I don’t know him. I will say, all the staff (from the techs that clean the rooms to the medical department heads) are all top notch. Through the last 6 years my DH has been in a lot of hospitals and medical Offices. MSK blows all of those out of the water. If your surgeon has a problem during surgery, he will have an assist from another top notch doctor. If you have any questions, shoot the doctor a note through the portal. I honestly think they try not to overwhelm people with info, but if you ask they are more than happy to go in depth with you. I have found a few that really enjoy it and appreciate a patient that is thorough.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19 lung/adrenal gland recurrence 11/19
Adrenal ablation2/20 Robotic Assisted VATS 3/20 Xeloda again
9/2020 SBRT on Adrenal Met 2/2021 peripancreatic node zapped
into triple digit chemo rounds

annieliz
Posts: 54
Joined: Fri Jul 26, 2019 5:13 pm

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

Postby annieliz » Thu Jul 22, 2021 1:18 pm

Dr. Garcia Aguilar was my surgeon. He is the best and very experienced with robotic surgery.
You are in great hands - all the best to you,
Anne
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19-1.9, 12/6/19-2.3, 2/28/20-1.7, 11/27 - 1.9, 2/10/21 - 1.5
8/16/19 - 11/23/19 FOLFOX - 8 rounds
10/9 flex sig ~30% shrinkage 11/27/19-a bit more shrinkage
Neulasta 9/29/19, 10/27/19, 11/24/19
25 days Xeloda and radiation 12/17/2019 - 1/22/20
Robotic LAR 4/14/20 - clear margins - 0/15 nodes
Temp ileostomy - Reversal 7/15 - minor LARS
10/19/20 - clear colonoscopy
2/10/21 - clear CT

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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 23, 2021 11:31 pm

TiredandTroubled wrote:... I’m scheduled to get surgery next week ...

Are you all set for your surgery next week? Do you now have all the things that you will need to have at home during the recovery period? For example, all of the right kinds of food and medical supplies that you will need to have close at hand ?

Now is the time to do some last-minute shopping, since you may not feel like doing much shopping just after you have been discharged from the hospital. Just a thought ...

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 24, 2021 6:35 am

Jacques wrote:
TiredandTroubled wrote:... I’m scheduled to get surgery next week ...

Are you all set for your surgery next week? Do you now have all the things that you will need to have at home during the recovery period? For example, all of the right kinds of food and medical supplies that you will need to have close at hand ?

Now is the time to do some last-minute shopping, since you may not feel like doing much shopping just after you have been discharged from the hospital. Just a thought ...


I’m trying to gather everything I can think of, do you have any suggestions?
29F DX 7/19
CC Sigmoid Colon
Size: 7CM
CEA before surgery: 16


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