Biopsy is High Grade Dysplasia but MRI staging is T1N1b

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OriolesFan88
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Biopsy is High Grade Dysplasia but MRI staging is T1N1b

Postby OriolesFan88 » Sat Oct 02, 2021 3:09 pm

Hi all,

This is my first post, I'm so glad I found this community. I am helping my mother face rectal cancer and would greatly appreciate your thoughts and advice.

She had a colonoscopy and then endoscopic ultrasound (EUS) concerning a suspicious polyp in the lower rectum. The EUS staging came back as T1. However biopsies taken during both the colonoscopy and EUS were only "high grade dysplasia." Based on these findings we were told that a endoscopic submucosal dissection (ESD) should be curative, but they wanted to do an MRI first. Well, we just got the MRI results and there were apparently are two suspicious lymph nodes. The MRI staging is T1N1b, which I understand is Stage IIIA (assuming it is also M0). The doctor that was going to perform the ESD advised cancelling that procedure and is instead referring my mom to a multi-disciplinary rectal cancer clinic where it sounds like they may do additional scans I guess to also check for spread to distant lymph nodes.

We are feeling whiplash from expecting that her case was relatively early and not even necessarily cancer to now hearing that she may have fairly advanced rectal cancer. It is a struggle for us because my mom doesn't research much about what is going on or ask many questions of the doctors so I try to join all the meetings I can but I am not always able to. For example when the doctor called her and told her about canceling the ESD procedure I would have all kinds of questions that I was not able to ask. So I am coming to you all in hopes that you may have some insights on some of my questions:

1. Is it normal that multiple biopsies would show only high grade dysplasia and yet the tumor is not only in fact cancerous but would have already spread to lymph nodes? What degree of certainty should we have about the MRI results in light of the biopsy results?

2. What would have been the harm in going ahead and doing the ESD and then testing the removed tumor and going from there? ESD wouldn't preclude later surgery, right?

3. Assuming no spread to distant lymph nodes, I am reading that the T1 part of T1N1 makes her case still have a good outlook relative to other stages, even some stage II that have higher T values? Are there folks that had T1N1 that can share their experience and what their treatment was like?

4. In the case that she has to do chemoradiation prior to and/or after surgery, how long might the course be and would she be quite fatigued? This is of concern in part because right now she provides childcare for my son while my spouse and I are at work, so I am wondering if we need to start figuring that out ASAP.

Thank you for any thoughts you may have!

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O Stoma Mia
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Re: Biopsy is High Grade Dysplasia but MRI staging is T1N1b

Postby O Stoma Mia » Sun Oct 03, 2021 3:30 am

OriolesFan88 wrote:...
The doctor that was going to perform the ESD advised cancelling that procedure and is instead referring my mom to a multi-disciplinary rectal cancer clinic where it sounds like they may do additional scans I guess to also check for spread to distant lymph nodes.
...
Thank you for any thoughts you may have!

Yes, I do have some thoughts, but first I have some questions.

  1. Is the multi-disciplinary clinic you are referring to the one located in Baltimore ?
    .
  2. What kind of hospital or clinic performed the original colonoscopy, the original biopsies, and the original MRI, and is it among the top 50 hospitals ranked by U.S. News & World Report? Best U.S. Hospitals
    You can find out the ranking of your hospital by entering its information on the web site's webpage.
    .
  3. What kind of "suspicious polyp" was it? A flat, sessile polyp, or a pedunculated polyp, and how large is it?
It appears to me that you were given outdated information about the currently recommended procedure for dealing with node-positive T1N1 tumors. The most recent 2020 update of the NCCN Guideline for Rectal Cancer recommends Total Neoadjuvant Therapy (TNT), whereby all treatment takes place before surgery, and no treatment remains to be done after surgery. This new paradigm is recommended in order to attack the lymph node metastases -- as well as lymphovascular invasion -- as soon after diagnosis as possible so as to eradicate any micro-metastases that might be present.

If this paradigm is accepted, then it would mean that immediate ESD surgery would not be possible because that would then require a 5 to 6 week post-surgery recovery period when no type of chemo or radiation could be applied at all, thus leaving the lymph nodes and micrometastases without any treatment for the first month and a half or so after diagnosis and allowing them to grow and proliferate uncontrolled during this critical period.

You can read about the new TNT protocol here:

TNT for Locally Advanced Rectal Cancer (LARC)
https://jnccn.org/view/journals/jnccn/18/7/article-p806.xml

The current TNT options for Locally Advanced Rectal Cancer (LARC) --in particular for T1N1 cases -- are shown in blue font in NCCN's REC-5 diagram below.

Image

TIP:  If you are going to go to the multi-disciplinary rectal cancer clinic for a referral, you could ask them to do a PET/CT scan with barium as oral contrast, and intravenous 18F-Fluordeoxyglucose (FDG) radioactive glucose as tracer, and this would help clarify whether the suspicious lymph nodes are cancerous or not. If the nodes are cancerous, then they should light up and shine brightly after quickly absorbing the glucose.

OriolesFan88
Posts: 4
Joined: Sat Oct 02, 2021 2:31 pm

Re: Biopsy is High Grade Dysplasia but MRI staging is T1N1b

Postby OriolesFan88 » Sun Oct 03, 2021 9:47 am

O Stoma Mia wrote:
OriolesFan88 wrote:...
The doctor that was going to perform the ESD advised cancelling that procedure and is instead referring my mom to a multi-disciplinary rectal cancer clinic where it sounds like they may do additional scans I guess to also check for spread to distant lymph nodes.
...
Thank you for any thoughts you may have!

Yes, I do have some thoughts, but first I have some questions.

  1. Is the multi-disciplinary clinic you are referring to the one located in Baltimore ?
    .
  2. What kind of hospital or clinic performed the original colonoscopy, the original biopsies, and the original MRI, and is it among the top 50 hospitals ranked by U.S. News & World Report? Best U.S. Hospitals
    You can find out the ranking of your hospital by entering its information on the web site's webpage.
    .
  3. What kind of "suspicious polyp" was it? A flat, sessile polyp, or a pedunculated polyp, and how large is it?


1. Yes, my assumption is that it’ll be that Johns Hopkins clinic as it is the Johns Hopkins hospital system that she’s now working with.

2. The original colonoscopy and biopsy was performed by a small practice. That GI doctor apparently thought it was cancerous, while biopsy showed high grade dysplasia. She also had a CT scan done with another practice that apparently didn’t show cancerous spread. The EUS, second biopsies (also showing high grade dysplasia), and MRI were all performed by Johns Hopkins, and it was Johns Hopkins that was going to perform the ESD.

3. According to the MRI, the craniocaudal length is 2.5cm. The biopsies describe it as tubular adenoma. For what it is worth, both the EUS and MRI results describe it as a tumor.

Thank you so much for your time and help.

OriolesFan88
Posts: 4
Joined: Sat Oct 02, 2021 2:31 pm

Re: Biopsy is High Grade Dysplasia but MRI staging is T1N1b

Postby OriolesFan88 » Mon Oct 04, 2021 11:13 am

O Stoma Mia wrote:
OriolesFan88 wrote:...
The doctor that was going to perform the ESD advised cancelling that procedure and is instead referring my mom to a multi-disciplinary rectal cancer clinic where it sounds like they may do additional scans I guess to also check for spread to distant lymph nodes.
...
Thank you for any thoughts you may have!

Yes, I do have some thoughts, but first I have some questions.

  1. Is the multi-disciplinary clinic you are referring to the one located in Baltimore ?
    .
  2. What kind of hospital or clinic performed the original colonoscopy, the original biopsies, and the original MRI, and is it among the top 50 hospitals ranked by U.S. News & World Report? Best U.S. Hospitals
    You can find out the ranking of your hospital by entering its information on the web site's webpage.
    .
  3. What kind of "suspicious polyp" was it? A flat, sessile polyp, or a pedunculated polyp, and how large is it?
It appears to me that you were given outdated information about the currently recommended procedure for dealing with node-positive T1N1 tumors. The most recent 2020 update of the NCCN Guideline for Rectal Cancer recommends Total Neoadjuvant Therapy (TNT), whereby all treatment takes place before surgery, and no treatment remains to be done after surgery. This new paradigm is recommended in order to attack the lymph node metastases -- as well as lymphovascular invasion -- as soon after diagnosis as possible so as to eradicate any micro-metastases that might be present.

If this paradigm is accepted, then it would mean that immediate ESD surgery would not be possible because that would then require a 5 to 6 week post-surgery recovery period when no type of chemo or radiation could be applied at all, thus leaving the lymph nodes and micrometastases without any treatment for the first month and a half or so after diagnosis and allowing them to grow and proliferate uncontrolled during this critical period.

You can read about the new TNT protocol here:

TNT for Locally Advanced Rectal Cancer (LARC)
https://jnccn.org/view/journals/jnccn/18/7/article-p806.xml

The current TNT options for Locally Advanced Rectal Cancer (LARC) --in particular for T1N1 cases -- are shown in blue font in NCCN's REC-5 diagram below.

Image

TIP:  If you are going to go to the multi-disciplinary rectal cancer clinic for a referral, you could ask them to do a PET/CT scan with barium as oral contrast, and intravenous 18F-Fluordeoxyglucose (FDG) radioactive glucose as tracer, and this would help clarify whether the suspicious lymph nodes are cancerous or not. If the nodes are cancerous, then they should light up and shine brightly after quickly absorbing the glucose.


Thank you, this is very helpful. To clarify, the ESD was scheduled before the MRI results came back showing T1N1. Once those were back, they cancelled the ESD. Your answer about the recovery period helps me understand why they probably did so. One of the things I am confused about, though, is why the biopsies only found high grade dysplasia if in fact the tumor is cancerous and advanced enough to have spread to lymph nodes, per the MRI?

I will bring up the PET/CT scan you mention, thanks!

itsfineimanurse
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Joined: Wed Apr 29, 2020 6:49 pm

Re: Biopsy is High Grade Dysplasia but MRI staging is T1N1b

Postby itsfineimanurse » Mon Oct 04, 2021 12:13 pm

My original pathology report also showed only high grade dysplasia. Similarly to your story, my GI doc also was sure it was cancer. They did more digging and did find invasive adenocarcinoma. In my case, the tumor was sizeable, but the area of actual invasive cancer was small. They won't leave you guys hanging. If it is actual cancer, they will do what they need to find it- I would hope.
Good luck xx
Diagnosed at 34- 2 kids (now 4 and 2)
Dx. T3b N1a RC 01/2020
FOLFOX 01-05/2020
Xeloda + Radiation 06-07/2020
LAR/Diverting Ileostomy 9/2020- Pathological Complete Response!
Clear Scan 11/2020
Ileostomy Reversal 02/2021
Clear Scan 02/2021, 05/2021- graduated from 3 to 6 month scans/labs

OriolesFan88
Posts: 4
Joined: Sat Oct 02, 2021 2:31 pm

Re: Biopsy is High Grade Dysplasia but MRI staging is T1N1b

Postby OriolesFan88 » Mon Oct 04, 2021 12:28 pm

itsfineimanurse wrote:My original pathology report also showed only high grade dysplasia. Similarly to your story, my GI doc also was sure it was cancer. They did more digging and did find invasive adenocarcinoma. In my case, the tumor was sizeable, but the area of actual invasive cancer was small. They won't leave you guys hanging. If it is actual cancer, they will do what they need to find it- I would hope.
Good luck xx


I see, it sounds like the high grade dysplasia finding may not be all that out of the ordinary. Appreciate your info!

itsfineimanurse
Posts: 8
Joined: Wed Apr 29, 2020 6:49 pm

Re: Biopsy is High Grade Dysplasia but MRI staging is T1N1b

Postby itsfineimanurse » Mon Oct 04, 2021 3:15 pm

It's my understanding that high grade dysplasia is basically cancer but it can't spread YET. So, either way, you want it gone because if left alone, it can turn into cancer that can spread.
Diagnosed at 34- 2 kids (now 4 and 2)
Dx. T3b N1a RC 01/2020
FOLFOX 01-05/2020
Xeloda + Radiation 06-07/2020
LAR/Diverting Ileostomy 9/2020- Pathological Complete Response!
Clear Scan 11/2020
Ileostomy Reversal 02/2021
Clear Scan 02/2021, 05/2021- graduated from 3 to 6 month scans/labs

User avatar
O Stoma Mia
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Location: On vacation. Off-line for now.

Re: Biopsy is High Grade Dysplasia but MRI staging is T1N1b

Postby O Stoma Mia » Tue Oct 05, 2021 1:11 am

OriolesFan88 wrote:...One of the things I am confused about, though, is why the biopsies only found high grade dysplasia if in fact the tumor is cancerous and advanced enough to have spread to lymph nodes, per the MRI?

Yes, all of these things are indeed confusing, but if you are soon having a meeting with the multidisciplinary team, they might be able to "dig deeper" and come up with an explanation, especially if you have a list of questions for them. Some points that you might want to explore are:
  • The biopsies might have been only "surface biopsies" that didn't reach the core of the tumor. Tumors are not always homogeneous in content. The malignancy might be at the root of the polyp/tumor, not at the surface.
  • The MRI result might be some kind of artifact due, for example, to excessive patient movement during the scan, or to patient's failure to follow "Hold your breath now" instructions, etc.
  • The CT and MRI scans might not have been done with contrast or might not have been done with the best kind of contrast. Sometimes contrast is omitted due to patient allergies or weak kidneys. The type(s) of contrast used during the scan should be indicated in the scan report.
  • The scan machines used might have been old generation models. You can usually find the model listed in a footnote of the scan report. MRI machines of 1.5 Tesla strength are old models; MRI machines of 3.0 T are newer models with higher definition that usually come with better artificial intelligence (AI) modules for pattern recognition. There are some even newer models called multi-parameter mpMRI used to visualize things like blood flow in tumors, but they are very expensive and maybe not yet available at your hospital.
  • The scan reports might not have been done by the most experienced radiologists. They might have been done by junior radiologists or by radiology students who are still in training at the hospital. (This happened to me once and led to a re-scanning that gave different results.)
  • etc., etc.
One thing for sure is that you need to have a good, confirmed, validated diagnosis before proceeding onward to any kind of treatment.
Good luck with your upcoming consultations!
=====
Do you have an appointment set up yet for a Thursday meeting with the multi-disciplinary rectal cancer team? Have you tried to contact the nurse practitioner who is the coordinator of the rectal cancer survivorship support group that they have there?

PS: You have only 4 posts and are still at the level of Newly Registered User. You need to post more messages in order to be promoted to Regular User status with more privileges, like posting messages directly to the board without without going through the moderator review process.

Another point. Where are the two suspicious lymph nodes actually located, and could they be inflamed for a different reason, for example, a yeast infection?
Last edited by O Stoma Mia on Thu Oct 07, 2021 4:22 am, edited 2 times in total.

roadrunner
Posts: 168
Joined: Sun Jan 12, 2020 8:46 pm

Re: Biopsy is High Grade Dysplasia but MRI staging is T1N1b

Postby roadrunner » Tue Oct 05, 2021 8:58 am

Anecdotal, but after chemo and chemoradiation, my surgeon did extensive biopsies of the area where my tumor had been. I had an inconclusive MRI. The biopsy findings included high-grade dysplasia. My surgeon said “there’s cancer in there.” He based that on physical examination and his experience. I wanted to be sure, because surgery was indicated. I did a lot of research, and the sensitivity of biopsy in this circumstance (and most similar circunstances) is quite low. Ultimately, surgery revealed that a very small amount of cancer remained at the location.
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.

CancerBum21
Posts: 27
Joined: Fri Feb 26, 2021 6:27 am

Re: Biopsy is High Grade Dysplasia but MRI staging is T1N1b

Postby CancerBum21 » Mon Oct 11, 2021 7:38 pm

I would be prepared for lots of twist and turns as you start the cancer journey. I’ve come to know that it’s totally normal. I had a similar story of initial staging but we didn’t find the cancer in the lymph nodes until after surgery. The mri didn’t pick them up. Luckily my surgeon decided to grab one during surgery.

The thing that really sucks is that post surgery there’s really nothing left to see if all the chemo and radation worked. There’s nothing to measure… so after it’s all said and done you’re left wondering if it worked. Surgery last is def the way to go in my opponion. At least you can see the tumor Shrinking and dissapearing.
34/M
DX:(Rectal Cancer) 2/15/21
Stage: T1N0M0
TAMIS Surgery 3/10/21
Pathology: T1NxM0 - LIV positive, 1/1 lymph positive Stage IIIA
FOLFOX 6 rounds
Radation & Xelota 5 weeks


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