The Colon Club

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.

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.

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.

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.

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.

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.)

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.

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.

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!

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

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!

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.

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

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 ...

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?