Meeting with surgeon Tuesday...what to ask?

[Daniellabella]

Hi everyone,

My husband has been diagnosed with rectosigmoid cancer.

He has a 6cm mass about 10-11 cm from the anal verge.

By the time we meet with the surgeon, my husband’s MRI for staging will have been completed, as well as the biopsies from the scope.

Those of you with experience, can you please tell me what questions I should be asking the surgeon?

I am so overwhelmed and don’t know what I should be inquiring about!

[O Stoma Mia]

Hi everyone,

My husband has been diagnosed with rectosigmoid cancer.
He has a 6cm mass about 10-11 cm from the anal verge.
By the time we meet with the surgeon, my husband’s MRI for staging will have been completed, as well as the biopsies from the scope.
Those of you with experience, can you please tell me what questions I should be asking the surgeon?

I am so overwhelmed and don’t know what I should be inquiring about!

You could ask some questions like the following:

1. What about inspecting the rest of the colon? The sigmoidoscopy only looks at the left 1/3 of the colon. What about the rest of the colon? What if there are tumors or polyps there? Normally, surgery is not done until they have looked at the whole colon.

2. Where, exactly ,is the lowest part of the tumor located? Where is the upper-most part of the tumor located?

3. Where would the surgeon plan to make the lower cut? In the upper rectum? In the mid-rectum? Where would he plan to make the upper cut? In the sigmoid colon? How much of the colon/rectum would have to be removed? (i.e., how many cm.?)

4. How much of the rectum will be left after they have removed the tumor with good margins?

5. Will the surgery involve an ileostomy/? (for a temporary stoma bag, to be used while the surgery is healing)

6. What kind of surgery would he plan on using? Open surgery LAR? Laparascopic-assisted LAR? A left hemi-colectomy? Would the surgery be a "sphincter-preserving" surgery?

7. Does he plan to do a Total Mesorectal Excision (TME), and a Total Mesosigmoid Excision at the same time?

8. Would there be any pre-surgery treatment involved (e.g., chemo/radiation for 28 days before surgery to try to shrink the tumor in advance)?

9. What does the MRI say about the depth of the tumor invasion in the colon wall? (i.e., the "T" in the TNM staging).

10. Does the MRI have any information about the local lymph node involvement (i.e., the "N" in the TNM staging)? Any information about remote metastases (to the liver or lungs, for example) (i.e., the "M" in the TNM staging)?

11. Does the MRI have any information about possible perforation of the colon resulting from the prior sigmoidoscopy?

12. What is the current estimate of the Stage?

13. What can a CT scan discover that the MRI cannot discover? What additional information would they expect from a CT scan?

14. What does the biopsy say about the type of cancer? adenocarcinoma? What does it say about the grade of the tumor? What does it say about the amount of dysplasia?

15. Did the pathologist test for Microsatellite Stability (MSI) status of the tumor? If so, what is it -- MSI-L, MSI-H, or MSS, or what?


Be sure to write all your questions down before going to the meeting, and try to ask at least the most important ones. And be sure to take good notes. Also, be sure to read up on TNM staging before you go in for the appointment.

Good luck!

[LPL]

Hi Daniellabella,
You have recieved good info from O Stoma Mia.
I just want to wish you Good luck at the appointment with the surgeon. My DH was diagnosed with a tumor in what they descibed as ”rectosigmoid junction”. (See my signature). It is a lot to take in in the beginning, like a new language...
I recently saw this info (it’s almost like a little book..), maybe it can be of use to you?
This is for Colon cancer https://www.nccn.org/patients/guideline ... dex.html#1
This is for Rectal cancer
https://www.nccn.org/patients/guideline ... index.html
I am attaching both links because as I understand it some tumors in that area are labelled rectal.
Kind Regards /LPL

[DarknessEmbraced]

I hope your husband's appointment with the surgeon goes well!*hugs* I was diagnosed with a tumor at the rectosigmoid junction in 2014. I didn't need chemo and have been in remission since surgery.

[Daniellabella]

Hi everyone,

My husband has been diagnosed with rectosigmoid cancer.
He has a 6cm mass about 10-11 cm from the anal verge.
By the time we meet with the surgeon, my husband’s MRI for staging will have been completed, as well as the biopsies from the scope.
Those of you with experience, can you please tell me what questions I should be asking the surgeon?

I am so overwhelmed and don’t know what I should be inquiring about!

You could ask some questions like the following:

1. What about inspecting the rest of the colon? The sigmoidoscopy only looks at the left 1/3 of the colon. What about the rest of the colon? What if there are tumors or polyps there? Normally, surgery is not done until they have looked at the whole colon.

2. Where, exactly ,is the lowest part of the tumor located? Where is the upper-most part of the tumor located?

3. Where would the surgeon plan to make the lower cut? In the upper rectum? In the mid-rectum? Where would he plan to make the upper cut? In the sigmoid colon? How much of the colon/rectum would have to be removed? (i.e., how many cm.?)

4. How much of the rectum will be left after they have removed the tumor with good margins?

5. Will the surgery involve an ileostomy/? (for a temporary stoma bag, to be used while the surgery is healing)

6. What kind of surgery would he plan on using? Open surgery LAR? Laparascopic-assisted LAR? A left hemi-colectomy? Would the surgery be a "sphincter-preserving" surgery?

7. Does he plan to do a Total Mesorectal Excision (TME), and a Total Mesosigmoid Excision at the same time?

8. Would there be any pre-surgery treatment involved (e.g., chemo/radiation for 28 days before surgery to try to shrink the tumor in advance)?

9. What does the MRI say about the depth of the tumor invasion in the colon wall? (i.e., the "T" in the TNM staging).

10. Does the MRI have any information about the local lymph node involvement (i.e., the "N" in the TNM staging)? Any information about remote metastases (to the liver or lungs, for example) (i.e., the "M" in the TNM staging)?

11. Does the MRI have any information about possible perforation of the colon resulting from the prior sigmoidoscopy?

12. What is the current estimate of the Stage?

13. What can a CT scan discover that the MRI cannot discover? What additional information would they expect from a CT scan?

14. What does the biopsy say about the type of cancer? adenocarcinoma? What does it say about the grade of the tumor? What does it say about the amount of dysplasia?

15. Did the pathologist test for Microsatellite Stability (MSI) status of the tumor? If so, what is it -- MSI-L, MSI-H, or MSS, or what?


Be sure to write all your questions down before going to the meeting, and try to ask at least the most important ones. And be sure to take good notes. Also, be sure to read up on TNM staging before you go in for the appointment.

Good luck!

This list of questions is AMAZING!!!!

Thank you so much!

I will update tomorrow after the appointment!

[Daniellabella]

Ok, just got back from surgeon appointment. I’m not sure how I should feel about this news.....here goes:

-CT still has to be done tomorrow and pathology report still not back, however....

-surgeon tentatively puts this at stage 3. He says T3, N? (Although he’s not a radiologist he looked up hubbys scans and said he sees some lymph involvement), so far M0. (That could change after CT scan but hubby had clean lung X-ray this weekend and clean liver ultrasound 3 weeks ago).

-Surgeon says tumor is high up enough that no colostomy or ileostomy needed.

-planning on 1 month of radiation, 8 weeks off, then surgery.

.......

A few questions I thought of AFTER leaving the doctors....

1. I know a CT scan has to be done, but is it at all reassuring that the liver ultrasound and chest X-ray were ok? Or are those results worthless in this situation?

2. Also, he said lymph involvement. So is this a death sentence?

I’m so overwhelmed and not sure if I should be bawling my eyes out or celebrating he didn’t say stage 4?

[juliej]

Ok, just got back from surgeon appointment. I’m not sure how I should feel about this news.....here goes:

-CT still has to be done tomorrow and pathology report still not back, however....

-surgeon tentatively puts this at stage 3. He says T3, N? (Although he’s not a radiologist he looked up hubbys scsns snd said he sees some lymph involvement), so far M0. (That cold change after CTsczn but hubby had clean lung X-ray this weekend and clean liver ultrasound 3 weeks ago).

-Surgeon says tumor is high up enough that no colostomy or ileostomy needed.

-planning on 1 month of radiation, 8 weeks off, then surgery.

.......

A few questions I thought of AFTER leaving the doctors....

1. I know a CT scan has to be done, but is it at all reassuring that the liver ultrasound and chest X-ray were ok? Or are those results worthless in this situation?

2. Also, he said lymph involvement. So is this a death sentence?

I’m so overwhelmed and not sure if I should be bawling my eyes out or celebrating he didn’t say stage 4?

Daniellabella, there's lots of good news here! It's great that the tumor is high up so he won't need an ileostomy. And the clean lung x-ray and clean liver ultrasound are both good signs -- although the definite results will come from the CT scan.

Some lymph node involvement is far from a death sentence. They will remove a number of lymph nodes during the surgery and that will help determine the amount of involvement. It's also entirely possible that the preoperative radiotherapy may kill what's in the lymph nodes.

Hang in there! I know it's overwhelming to say the least, but you will come up to speed on this whole process quickly. It's scary but dig down deep inside and find your inner strength to get through this. And remember we're here for you. Sending good thoughts and prayers your way!

Juliej

[LPL]

Danieelabella wrote:
I’m so overwhelmed and not sure if I should be bawling my eyes out or celebrating he didn’t say stage 4?

Whatever happens regarding your DH’s upcoming test results - please note Julie’s signature and also mine(=my husband). Being labelled a stage 4 does not have to be without hope for NED.

[Daniellabella]

Danieelabella wrote:
I’m so overwhelmed and not sure if I should be bawling my eyes out or celebrating he didn’t say stage 4?

Whatever happens regarding your DH’s upcoming test results - please note Julie’s signature and also mine(=my husband). Being labelled a stage 4 does not have to be without hope for NED.

Thank you and I’m sorry! I didn’t mean to offend.

I’m just panicked out of my mind. Your signatures are very encouraging!

What is NED?

[LPL]

Daniellabella,
No apologi needed, I just wanted you to know.
And NED stands for ”no evidence of disease”
Kind regards /LPL

[O Stoma Mia]

...What is NED?

For your information, the acronym NED is usually defined as:

NED - No Evidence of Disease

There are several things that can be said about this concept.
.

• This is essentially "street language" for the more technical term,"In remission". In official correspondence and in professional journal articles the term "In remission" is usually preferred because it has a definition that is more stable and is usually understood the same way by medical professionals and patients alike.
  
  Remission: What Does It Mean?
  https://www.webmd.com/cancer/remission-what-does-it-mean
  .

NOTE: I have included several additional bullet points above to signify that there is a quite a lot more that can be said about the concept of "NED", but this is not the place to discuss all of those details. At this point is is only necessary to understand that NED typically means "No evidence of disease", and that it does not mean "No existing disease"

[Daniellabella]

I’m feeling really down tonight.

I highly doubt my husband will do chemo/radiation.

And even if he did, I don’t think he’ll stick with it.

He’s supposed to have a full colonoscopy next week and is now refusing, saying he won’t go because he’s “done being poked and prodded.”

I’m just feeling defeated, helpless and angry.

Thanks for listening to my rant.

[malene1207]

I’m feeling really down tonight.

I highly doubt my husband will do chemo/radiation.

And even if he did, I don’t think he’ll stick with it.

He’s supposed to have a full colonoscopy next week and is now refusing, saying he won’t go because he’s “fine being poked and prodded.”

I’m just feeling defeated, helpless and angry.

Thanks for listening to my rant.

Awwwww..... I didn't read if you have kids. If yes, maybe they can help to convince your husband to go through with the procedure. My brother took us months (almost every day we are bugging him to get the colonoscopy) eventually he did. After the surgery, lots of regrets, what ifs, among all of us but the good thing about it is that we got it early.

Hang in there. I think deep inside they are scared.

[O Stoma Mia]

...
-CT still has to be done tomorrow and pathology report still not back, however....

So, has the CT scan been done by now? When will the CT scan report be ready, and when do you expect to have the pathology report?

Both of these reports are needed in order to clarify the diagnosis and staging. Do you have to meet with the doctor to get these reports?

[Daniellabella]

...
-CT still has to be done tomorrow and pathology report still not back, however....

So, has the CT scan been done by now? When will the CT scan report be ready, and when do you expect to have the pathology report?

Both of these reports are needed in order to clarify the diagnosis and staging. Do you have to meet with the doctor to get these reports?

Not sure when they will be done, but hopefully by mid-week this coming week.

On a more stressful note, I just found out my husband CANCELLED his colonoscopy for next week.

UGH. He’s in denial!