Are we doing everything we can?

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NHMike
Posts: 1429
Joined: Fri Jul 21, 2017 3:43 am

Re: Are we doing everything we can?

Postby NHMike » Mon Jul 09, 2018 1:26 pm

O Stoma Mia wrote:One type of testing that should be done on the tumor is the test for "MSI status", otherwise called "MMR mismatch repair" testing. Since January 1, 2018, both AJCC and NCCN recommend that all patients with Stage II CRC be tested for MSI status, because it could make a difference in subsequent choice of adjuvant therapy.


I was under the impression that MMR testing was done with a blood test.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

Deb m
Posts: 409
Joined: Tue Jan 14, 2014 10:08 am

Re: Are we doing everything we can?

Postby Deb m » Mon Jul 09, 2018 2:39 pm

MMR testing can be done with a blood test, but it's best , if possible to do it on the tumor tissue. That's what our oncologist told us.

NHMike
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Joined: Fri Jul 21, 2017 3:43 am

Re: Are we doing everything we can?

Postby NHMike » Mon Jul 09, 2018 2:57 pm

Deb m wrote:MMR testing can be done with a blood test, but it's best , if possible to do it on the tumor tissue. That's what our oncologist told us.


If you do it on the tumor tissue, then it's possible that there was an MMR mutation in the tumor. If you do it with the blood test, then you determine whether it's in the person or not. Since the oncologist is dealing with the tumor, then it seems like the status of the tumor would be more important.

The blood test, though, would be more useful in determining risk factors absent any cancer.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

emkaye
Posts: 37
Joined: Tue May 22, 2018 1:37 am

Re: Are we doing everything we can?

Postby emkaye » Tue Jul 10, 2018 9:05 am

NHMike wrote:If the Oncotype order is for NextGen sequencing, then it should do the complete sequence of the tumor genome. In previous generation sequencing, you ordered one or a few tests at a time and they did those tests individually. NextGen gets the whole genome and then you look for known cancer mutations. So a second sequencing wouldn't make sense unless you thought that the first was in error. There may be differences in what is checked for in mutations or in the interpretation as the science is advancing all the time. But they should tell you what mutation(s) are present in the tumor sample and that can affect treatment. I wasn't able to look at the Oncotype DX description as their website is really slow or my internet connection has problems.


From the Oncotype website:
Oncotype DX® Colon Cancer Assay uses RT-PCR to determine the expression of a panel of 12 genes in tumor tissue. The Recurrence Score® result is calculated from the gene expression results, and ranges from 0-100.
These findings are applicable to stage II patients with adenocarcinoma or mucinous carcinoma limited to the colon. It is unknown whether the findings apply to other patients outside these criteria.
Clinical Experience is based on a prospectively-designed validation study with a pre-specified analysis of the Recurrence Score result, in the context of T-Stage and MMR status (MMR proficient (MMR-P) or MMR deficient (MMR-D)), using patients from the surgery-alone arm of the QUASAR study (N=711).

NHMike
Posts: 1429
Joined: Fri Jul 21, 2017 3:43 am

Re: Are we doing everything we can?

Postby NHMike » Tue Jul 10, 2018 9:50 am

emkaye wrote:From the Oncotype website:
Oncotype DX® Colon Cancer Assay uses RT-PCR to determine the expression of a panel of 12 genes in tumor tissue. The Recurrence Score® result is calculated from the gene expression results, and ranges from 0-100.
These findings are applicable to stage II patients with adenocarcinoma or mucinous carcinoma limited to the colon. It is unknown whether the findings apply to other patients outside these criteria.
Clinical Experience is based on a prospectively-designed validation study with a pre-specified analysis of the Recurrence Score result, in the context of T-Stage and MMR status (MMR proficient (MMR-P) or MMR deficient (MMR-D)), using patients from the surgery-alone arm of the QUASAR study (N=711).


This is what I received from the Doctor that did the Genomic Tumor pathology for me:

The first assay analyzes RNA to look for expressed transcripts containing sequences from two different genes. This is to look for fusion transcripts as a result of translocations. An example of a commonly recognized translocation is the BCR-ABL translocation which defines chronic myelogenous leukemia and is the target for Gleevec. This RNA assay essentially looks for fusions similar to BCR-ABL but focusing on 50+ target genes associated with fusions in solid tumors like colon adenocarcinoma.

...

The second assay analyzes DNA to look for variants at the gene level in 91+ genes.

This was using NextGen. I think that RT-PCR is an older technique but am not 100% sure. I sent my son an email asking him about it as he works with this stuff.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

emkaye
Posts: 37
Joined: Tue May 22, 2018 1:37 am

Re: Are we doing everything we can?

Postby emkaye » Tue Jul 10, 2018 10:31 am

NHMike wrote:
emkaye wrote:This is what I received from the Doctor that did the Genomic Tumor pathology for me:

The first assay analyzes RNA to look for expressed transcripts containing sequences from two different genes. This is to look for fusion transcripts as a result of translocations. An example of a commonly recognized translocation is the BCR-ABL translocation which defines chronic myelogenous leukemia and is the target for Gleevec. This RNA assay essentially looks for fusions similar to BCR-ABL but focusing on 50+ target genes associated with fusions in solid tumors like colon adenocarcinoma.

...

The second assay analyzes DNA to look for variants at the gene level in 91+ genes.

This was using NextGen. I think that RT-PCR is an older technique but am not 100% sure. I sent my son an email asking him about it as he works with this stuff.


Interesting... this is the first I've heard of NextGen and it indeed sounds promising.

NHMike
Posts: 1429
Joined: Fri Jul 21, 2017 3:43 am

Re: Are we doing everything we can?

Postby NHMike » Tue Jul 10, 2018 10:43 am

emkaye wrote:Interesting... this is the first I've heard of NextGen and it indeed sounds promising.


Son has been working with it for about five years but they were in the game pretty early.

Son said that RT-PCR can be used with any kind of sequencing. With NextGen sequencing, though, you could just look at all of the known cancer genetic mutations.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

emkaye
Posts: 37
Joined: Tue May 22, 2018 1:37 am

Re: Are we doing everything we can?

Postby emkaye » Tue Jul 10, 2018 12:27 pm

NHMike wrote:
emkaye wrote:Interesting... this is the first I've heard of NextGen and it indeed sounds promising.


Son has been working with it for about five years but they were in the game pretty early.

Son said that RT-PCR can be used with any kind of sequencing. With NextGen sequencing, though, you could just look at all of the known cancer genetic mutations.


Thanks!

emkaye
Posts: 37
Joined: Tue May 22, 2018 1:37 am

Re: Are we doing everything we can?

Postby emkaye » Tue Jul 10, 2018 12:32 pm

So I was able to glean more information from the oncologists office visit notes. Some of this was not discussed face to face in her visit:

Surgical pathology:
12.5 cm, grade 2 Adenocarcinoma. Involving the pericolonic tissue. No evidence of perineural or lymphovascular invasion. No evidence of bowel perforation. None out of 28 lymph nodes showed cancer. Negative margins. The anterior margin was 3 mm from the anterior abdominal wall. pT3N0
(microsatellite stable based on IHC testing on the biopsy specimen)

From the surgeon:
"It appears that her cancer was rather large (12.5 cm in size) and there was an intraoperative finding of concern in the form of palpable peri-ileal lymph nodes. This required removal of 28 cm of ileum. Fortunately none of the lymph nodes contained cancer. Her cancer was unifocal with origin in the cecum. The cancer was noted to be adherent to the anterior abdominal wall however it was removed with an anterior 3 mm margin."

From the oncologist:
"One concern in my mind (relatively speaking), is tumor adherence to the anterior abdominal wall. Still the cancer was removed with a close but negative margin."

emkaye
Posts: 37
Joined: Tue May 22, 2018 1:37 am

Re: Are we doing everything we can?

Postby emkaye » Tue Jul 10, 2018 12:35 pm

So I was able to glean more information from the oncologists office visit notes. Some of this was not discussed face to face in her visit:

Surgical pathology:
12.5 cm, grade 2 Adenocarcinoma. Involving the pericolonic tissue. No evidence of perineural or lymphovascular invasion. No evidence of bowel perforation. None out of 28 lymph nodes showed cancer. Negative margins. The anterior margin was 3 mm from the anterior abdominal wall. pT3N0
(microsatellite stable based on IHC testing on the biopsy specimen)

From the surgeon:
"It appears that her cancer was rather large (12.5 cm in size) and there was an intraoperative finding of concern in the form of palpable peri-ileal lymph nodes. This required removal of 28 cm of ileum. Fortunately none of the lymph nodes contained cancer. Her cancer was unifocal with origin in the cecum. The cancer was noted to be adherent to the anterior abdominal wall however it was removed with an anterior 3 mm margin."

From the oncologist:
"One concern in my mind (relatively speaking), is tumor adherence to the anterior abdominal wall. Still the cancer was removed with a close but negative margin."
So this is MY concern as well and main reason to request to the secondary pathology review!

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O Stoma Mia
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Location: Traveling abroad

Re: Are we doing everything we can?

Postby O Stoma Mia » Tue Jul 10, 2018 1:37 pm

.

AJCC DEFINITIONS

T3: The tumor has grown through the muscularis propria and into the subserosa, which is a thin layer of connective tissue beneath the outer layer of some parts of the large intestine, or it has grown into tissues surrounding the colon or rectum.

T4a: The tumor has grown into the surface of the visceral peritoneum, which means it has grown through all layers of the colon.

T4b: The tumor has grown into or has attached to other organs or structures.

Reference: https://www.cancer.net/cancer-types/col ... cer/stages



My concern is that the staging was set only as Stage II-A (T3N0M0), when my reading of the AJCC guidelines above would suggest that this would likely be Stage II-C (T4bN0M0), because the tumor has apparently "grown through all layers of the colon" and attached itself "to other organs or structures" albeit with a very small margin (about 1/10 of an inch).

I don't understand why the doctors are not addressing the possibility of T4a or T4b involvement. Stage II-C is considered roughly equivalent to a Stage III when it comes to prognosis and it would definitely require first-line adjuvant therapy, either FOLFOX or CAPEOX, both of which involve oxaliplatin.

emkaye
Posts: 37
Joined: Tue May 22, 2018 1:37 am

Re: Are we doing everything we can?

Postby emkaye » Tue Jul 10, 2018 6:36 pm

O Stoma Mia wrote:.

AJCC DEFINITIONS

T3: The tumor has grown through the muscularis propria and into the subserosa, which is a thin layer of connective tissue beneath the outer layer of some parts of the large intestine, or it has grown into tissues surrounding the colon or rectum.

T4a: The tumor has grown into the surface of the visceral peritoneum, which means it has grown through all layers of the colon.

T4b: The tumor has grown into or has attached to other organs or structures.

Reference: https://www.cancer.net/cancer-types/col ... cer/stages



My concern is that the staging was set only as Stage II-A (T3N0M0), when my reading of the AJCC guidelines above would suggest that this would likely be Stage II-C (T4bN0M0), because the tumor has apparently "grown through all layers of the colon" and attached itself "to other organs or structures" albeit with a very small margin (about 1/10 of an inch).

I don't understand why the doctors are not addressing the possibility of T4a or T4b involvement. Stage II-C is considered roughly equivalent to a Stage III when it comes to prognosis and it would definitely require first-line adjuvant therapy, either FOLFOX or CAPEOX, both of which involve oxaliplatin.


This has been my concern from day one! I don't understand how it could have grown into the abdominal wall and NOT be a T4??? Just because they removed it all with clear margins doesn't make it a T3? I tried to ask the oncologist about this but didn't want to get into too much detail in front of my mother. She is already freaked out about all of this. I put a call into her oncologists office about the secondary review. That was yesterday morning and still no call back. I'm getting extremely frustrated with all of this. I don't want to be a pain... just want an accurate diagnosis so we can proceed or not with treatment. The secretary who took my call had this attitude like "no one ever asks for a second pathology review." Well tough honey. Just becuase you don't do it doesn't mean it doesn't happen. I guess I have to take matters into my own hands and contact the secondary review hospital myself. So frustrating!

Leeloo
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Location: Glasgow, Scotland, UK

Re: Are we doing everything we can?

Postby Leeloo » Thu Jul 12, 2018 7:48 pm

Hi emkaye,
There is an interesting article on colorectal carcinoma:pathological aspects. It says “adherence of other organs or structures at the tumor site does not necessarily qualify for T4b. Histologically, the adherent site may show only inflammatory changes, abscess formation and/or fibrosis, but without direct tumor involvement.” In other words, the inflammation can be seen in the tissues around the cancer as your body fights the invasion, and this can cause adhesions, even although there is no cancer in the tissue that is directly in the adhesion. It’s a bit like getting a paper cut in your finger, and seeing all the skin round about swell up and get sore too. So the surgeon can describe seeing the cancer and the tissue around it adhering, and the pathologist can still give a clear margin, if there are no cancer cells in the layer of inflammation around the tumour.

It sounds as though your Mum’s oncologist is being cautious, especially if they are recommending chemo. I hope she does well.
Leeloo
(R) hemicolectomy 13/08/13
Stage IIB T4N0(0/6)M0
Xelox x 4 (Scot trial)
NED

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O Stoma Mia
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Re: Are we doing everything we can?

Postby O Stoma Mia » Fri Jul 13, 2018 3:21 am

Leeloo wrote:Hi emkaye,
There is an interesting article on colorectal carcinoma:pathological aspects. It says “adherence of other organs or structures at the tumor site does not necessarily qualify for T4b...

Leeloo -
Thanks very, very much for posting this quote. I had not seen the article before, and it is quite interesting and appears to be very relevant in this case.

pT4a and Colorectal Adenocarcinoma
http://humpath.com/spip.php?article19215

I think it would be important for people who find themselves in this sort of situation to read the entire article, because it outlines some of the additional underlying issues that complicate the staging process.

I find this whole topic to be exceptionally difficult and confusing, in part because of all of the technical jargon used to describe the various layers of the colon wall:
Colon wall diagram

emkaye
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Joined: Tue May 22, 2018 1:37 am

Re: Are we doing everything we can?

Postby emkaye » Mon Jul 16, 2018 3:19 pm

Leeloo wrote:Hi emkaye,
There is an interesting article on colorectal carcinoma:pathological aspects. It says “adherence of other organs or structures at the tumor site does not necessarily qualify for T4b. Histologically, the adherent site may show only inflammatory changes, abscess formation and/or fibrosis, but without direct tumor involvement.” In other words, the inflammation can be seen in the tissues around the cancer as your body fights the invasion, and this can cause adhesions, even although there is no cancer in the tissue that is directly in the adhesion. It’s a bit like getting a paper cut in your finger, and seeing all the skin round about swell up and get sore too. So the surgeon can describe seeing the cancer and the tissue around it adhering, and the pathologist can still give a clear margin, if there are no cancer cells in the layer of inflammation around the tumour.

It sounds as though your Mum’s oncologist is being cautious, especially if they are recommending chemo. I hope she does well.
Leeloo


Thanks Leeloo! Mom's Oncologist just called today. He was out of the office last week, hence the delay. He was super nice and is being very thorough. He will send out the tissue to Hopkins for a secondary review as I requested but also will refer her to another hospital if needed (even make the appointment and send all her records). Mom is extremely anxious right now. I've tried to get her set up with a mental health professional but she is refusing so far. We've been to the ER 4 times since she was discharged and most of her issues are emotional at this point (anxiety, depression and insomnia). From a physical standpoint the doctor's are pleased with her progress but mentally she is struggling. The oncologist spoke a second time to the pathologist and the pathologist said that although her margins were close, there was no evidence of cancer outside of the colon wall so he is confident that the T3 staging is correct although there are many other factors that will sway her to receive chemo or not. The Oncologist is happy to send her to another for a second opinion, but again mom is refusing. It's been a struggle. I just pray that she can come to terms with this so she can get the best treatment needed. So we go ahead with the second pathology review for now.

Thanks again for all your support! It is so appreciated!!!!


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