Are we doing everything we can?

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

Are we doing everything we can?

Postby emkaye » Fri Jul 06, 2018 1:10 pm

Mom had her appointment with the oncologist today.
He went over the pathology report thoroughly and answered all our questions, however he is still not clear as whether to chemo or no. Her mass was very large (12.5 cm) and grew outside of the colon wall into the abdominal wall and small intestine. The pathology report came back with the following:

Histologic Grade: G2 Moderately differentiated
Tumor Extension: Tumor invades through the muscularis propria into pericolorectal tissue
Macroscopic Tumor Perforation: Not identified
Lymphovascular Invasion: Not identified
Perineural Invasion: Not identified

Margins: All margins are uninvolved by invasive carcinoma, high-grade dysplasia, intramucosal adenocarcinoma, and adenoma
Distance of Invasive Carcinoma from Closest Margin: 3 mm
Closest Margin: anterior abdominal wall adhesion

Lymph Nodes: 0/28

Pathologic Stage Classification (pTNM, AJCC 8th Edition)
Primary Tumor: pT3
Regional Lymph Nodes: pN0

He is ordering the Oncotype testing for further clarification. What scares me is the fact that her tumor was so large and grew outside of the colon wall into her other organs although the margins were clear. She is definitely in a grey area. She is not thrilled at the prospect of chemo but is willing to try. Even though she is Stage II, he would go the FULL monty chemo meaning OXALPLATIN regimen which I thought was reserved for higher grade Stage II and III of which hers is not. He says he likes to be aggressive and not short change his patients. Doctor's main concern at this point was the small margin 3mm.

My chief concerns are:
a) Should we get a 2nd opinion (we do really like this guy and he is VERY thorough)
b) Has anyone else done OXALPLATIN for Stage II?
c) Can we or SHOULD we have the tissue sent anywhere else (like a major cancer center) don't know if this is possible

Deb m
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Re: Are we doing everything we can?

Postby Deb m » Fri Jul 06, 2018 2:00 pm

I'm confused that they say it grew thru the colon wall, that would I believe make it a t4, but you say it's a t3? If it did indeed grow thru the colon wall then that alone puts you in a "High Risk " category for spread/occurrence. My husbands tumor also grew thru the colon wall, he was a stage IIbt4a. The oncologist at MDA didn't think twice about advising very strongly that we do chemo, folfox for 6 months/12 hits. Even if your scans at this point don't show anything, you need to assume that some cells have escaped in the abd. cavity which will not show on a scan till they form into a tumor. This is what we were told. I would highly recommend a second opinion from a major cancer center.

Wishing you the best,

deb m

Deb m
Posts: 417
Joined: Tue Jan 14, 2014 10:08 am

Re: Are we doing everything we can?

Postby Deb m » Fri Jul 06, 2018 2:09 pm

Yes it is possible to send everything to a major cancer center. By everything I mean, all scans, e-rays, colonoscopy results, pathology results, blood work. When they remove the tumor, they place it in slides and what they call blocks. These can also be sent to a major cancer center. Hospitals usually preserve and keep them so they should have them for you to send. A major cancer center will do their own pathology on all the tissue removed from you and come to their own conclusion. Usually you just need to notify the hospital where everything was done, and tell them where you want it all sent to and they will take care of it. I would recommend MDA, where we went or Sloan Kettering in New York, the Mayo clinic, Fred Hutchinson center in Seattle Washington. There are some others as well, but I think any of those would be good.

deb m

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

Re: Are we doing everything we can?

Postby emkaye » Fri Jul 06, 2018 3:46 pm

Yes I too think it would be prudent to send the path results to another hospital for a second look. We live close to a major university hospital with a cancer center. The surgery was done by a small local hospital. That's why I feel a bit uneasy about things. I too am confused when he said it grew through the wall yet was staged at T3. She had no other risk factors that would put her into the chemo bracket such as LNI, PNI, perforation but I still want a second opinion for piece of mind. I'm glad that he ordered the Oncotype which should help but I would feel a bit more at ease if we had a second set of eyes on her pathology.

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juliej
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Joined: Thu Aug 05, 2010 12:59 pm

Re: Are we doing everything we can?

Postby juliej » Fri Jul 06, 2018 4:24 pm

emkaye wrote:My chief concerns are:
a) Should we get a 2nd opinion (we do really like this guy and he is VERY thorough)
b) Has anyone else done OXALPLATIN for Stage II?
c) Can we or SHOULD we have the tissue sent anywhere else (like a major cancer center) don't know if this is possible

a) Yes!!! Get a 2nd opinion just to be safe. I agree with Deb that the staging seems odd, but more importantly, it sounds like the margins, although they were clear, were very slim. I would suggest an NCI-designated cancer center like Memorial Sloan Kettering or MD Anderson. Here is a link to finding one near you:

https://www.cancer.gov/research/nci-role/cancer-centers/find

b) Oxaliplatin is used for Stage 2's when many high-risk features are present. It's important to examine her genetic test results (MSI, MMR, MLH1, MSH2, APC, MSH6, PMS2, MUTYH, etc.) before making a decision since that impacts how aggressive the treatment needs to be. Make sure all the genetic tests are being done.

c) Yes, you can have the tissue sent to another cancer center. This is a common practice and they know how to ship the materials. In fact, if you arrange a consultation at another cancer center, they most likely will request the samples themselves.

Be thorough with this and get a second opinion! You won't get a chance for a do-over. More experienced eyes looking at her case will give her the best chance of beating this.

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 7/13/2018, CEA<1

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

Re: Are we doing everything we can?

Postby emkaye » Fri Jul 06, 2018 6:05 pm

Thanks everyone for your advice. This is helping quite a bit!
My issue is mom doesn't want a second opinion and doesn't want to travel. So that leaves us with a local hospital. HOWEVER, if we can have a 2nd pathology review done at a major cancer hospital with report sent to her local oncologist that would be great!

1. So I can just call her hospital and have them send the pathology slides etc. to other hospital? Who do I speak to at her hospital or should I call the 2nd hospital and have them request it from her hospital?
2. From what I'm reading we wouldn't actually need a consultation at another hospital to have the review done. We can request to send to her local oncologist right? This would be the optimal route so I wouldn't have to drag her across the country.

Sorry, new to this but want to make sure I'm following all the right steps.
Thanks again everyone! You have been a HUGE help!

SurvivorsSpouse
Posts: 82
Joined: Sun Nov 22, 2015 12:38 pm

Re: Are we doing everything we can?

Postby SurvivorsSpouse » Sat Jul 07, 2018 3:07 pm

This looks like the tumor was a T3 and 3mm from the anterior abdominal wall adhesion. I don’t see where it says the tumor itself adhered to the wall.

This would place the stage at 2A, which is questionable when it comes to chemo. The distance of 3mm from the margin and Grade 2 (moderate) might push this into the realm of chemo.

retiredteacher
Posts: 84
Joined: Sat Oct 21, 2017 1:34 pm

Re: Are we doing everything we can?

Postby retiredteacher » Sat Jul 07, 2018 8:38 pm

Was this rectal or colon?
Terri
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

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

Re: Are we doing everything we can?

Postby emkaye » Sun Jul 08, 2018 3:24 pm

retiredteacher wrote:Was this rectal or colon?
Terri

Colon

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

Re: Are we doing everything we can?

Postby emkaye » Sun Jul 08, 2018 3:29 pm

SurvivorsSpouse wrote:This looks like the tumor was a T3 and 3mm from the anterior abdominal wall adhesion. I don’t see where it says the tumor itself adhered to the wall.

This would place the stage at 2A, which is questionable when it comes to chemo. The distance of 3mm from the margin and Grade 2 (moderate) might push this into the realm of chemo.


Yes, this is why the oncologist is suspicious as well (especially because of the small margin). I'm going to call her doctor's office on Monday to look into getting the tissue sample sent to another hospital for a second pathology report. Our hospital is just a small local hospital. I would feel much better if we had a second pair of eyes on the tissue. Perhaps this would be more confusing (if the reports are conflicting) but I think we should at least try. Both she and I are happy with the oncologist. He was very thorough and detailed. I am happy to stick with him but I think he needs more information to make an informed decision.

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

Re: Are we doing everything we can?

Postby emkaye » Sun Jul 08, 2018 3:38 pm

Deb m wrote:Yes it is possible to send everything to a major cancer center. By everything I mean, all scans, e-rays, colonoscopy results, pathology results, blood work. When they remove the tumor, they place it in slides and what they call blocks. These can also be sent to a major cancer center. Hospitals usually preserve and keep them so they should have them for you to send. A major cancer center will do their own pathology on all the tissue removed from you and come to their own conclusion. Usually you just need to notify the hospital where everything was done, and tell them where you want it all sent to and they will take care of it. I would recommend MDA, where we went or Sloan Kettering in New York, the Mayo clinic, Fred Hutchinson center in Seattle Washington. There are some others as well, but I think any of those would be good.

deb m


The oncologist is already ordering the oncotype testing. If I order a secondary pathology report as well is this possible or can the specimen slides only be sent out to one location?

NHMike
Posts: 1539
Joined: Fri Jul 21, 2017 3:43 am

Re: Are we doing everything we can?

Postby NHMike » Sun Jul 08, 2018 5:48 pm

emkaye wrote:
Deb m wrote:Yes it is possible to send everything to a major cancer center. By everything I mean, all scans, e-rays, colonoscopy results, pathology results, blood work. When they remove the tumor, they place it in slides and what they call blocks. These can also be sent to a major cancer center. Hospitals usually preserve and keep them so they should have them for you to send. A major cancer center will do their own pathology on all the tissue removed from you and come to their own conclusion. Usually you just need to notify the hospital where everything was done, and tell them where you want it all sent to and they will take care of it. I would recommend MDA, where we went or Sloan Kettering in New York, the Mayo clinic, Fred Hutchinson center in Seattle Washington. There are some others as well, but I think any of those would be good.

deb m


The oncologist is already ordering the oncotype testing. If I order a secondary pathology report as well is this possible or can the specimen slides only be sent out to one location?


The biopsy is a block and it should be at the hospital where you had it done. They may use some of it up for the first pathology test. If there's enough leftover, it can be sent to another lab or hospital to do the Genomic Tumor Testing (Onctotype DX in your case). I had this done - my biopsy was taken during a colonoscopy and was at the hospital where the colonoscopy was done. My son's boss offered to do the Genomic Tumor Testing and I just had to fill out a form providing permission for them to request it. They requested the block and it was sent over and they did the testing on one of their Next Gen Sequencing Machines and his boss did the report for me.
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 » Mon Jul 09, 2018 12:29 pm

The biopsy is a block and it should be at the hospital where you had it done. They may use some of it up for the first pathology test. If there's enough leftover, it can be sent to another lab or hospital to do the Genomic Tumor Testing (Onctotype DX in your case). I had this done - my biopsy was taken during a colonoscopy and was at the hospital where the colonoscopy was done. My son's boss offered to do the Genomic Tumor Testing and I just had to fill out a form providing permission for them to request it. They requested the block and it was sent over and they did the testing on one of their Next Gen Sequencing Machines and his boss did the report for me.


Thanks, I have a call into the office and am waiting to hear back from the doctor to see about further pathological testing. The woman who I spoke to made it sound like "no one ever asks for a second pathological review." She seemed to think that the oncotype testing would be considered a secondary opinion itself however, oncotype is looking for genetic markers and not the tissue pathology itself. I hope I can get this done. Crossing fingers and saying a prayer.

NHMike
Posts: 1539
Joined: Fri Jul 21, 2017 3:43 am

Re: Are we doing everything we can?

Postby NHMike » Mon Jul 09, 2018 12:40 pm

emkaye wrote:
The biopsy is a block and it should be at the hospital where you had it done. They may use some of it up for the first pathology test. If there's enough leftover, it can be sent to another lab or hospital to do the Genomic Tumor Testing (Onctotype DX in your case). I had this done - my biopsy was taken during a colonoscopy and was at the hospital where the colonoscopy was done. My son's boss offered to do the Genomic Tumor Testing and I just had to fill out a form providing permission for them to request it. They requested the block and it was sent over and they did the testing on one of their Next Gen Sequencing Machines and his boss did the report for me.


Thanks, I have a call into the office and am waiting for a call back from the doctor to see about further pathological testing. The woman who I spoke to made it sound like "no one ever asks for a second pathological review." She seemed to think that the oncotype testing would be considered a secondary opinion however, oncotype is looking for genetic markers and not the tissue pathology itself. I hope I can get this done. Crossing fingers and saying a prayer.


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.
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

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O Stoma Mia
Posts: 1356
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad

Re: Are we doing everything we can?

Postby O Stoma Mia » Mon Jul 09, 2018 1:09 pm

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 don't know whether OncoTypeDX includes this test as part of its analysis, but I think it would be worthwhile to check with your doctor to make sure that this test is being done. It needs to be done by one of the accredited specialized labs. Local pathology labs may not be accredited for this type of testing, so they would have to send a tumor sample out for testing to one of the certified labs.

“...Moreover, MMR or MSI testing is recommended by the NCCN for all patients with stage II CRC, based on the results obtained by Sargent et al. suggesting that patients with dMMR tumour receiving FU-based therapy may receive no benefit from adjuvant systemic therapy...”
Reference: http://www.mdpi.com:8080/1422-0067/18/1/107/pdf(“Clinical Significance and Prognostic Relevance of Microsatellite Instability in Sporadic Colorectal Cancer Patients”)

Sargent, D.J.; Marsoni, S.; Monges, G.; Thibodeau, S.N.; Labianca, R.; Hamilton, S.R.; French, A.J.; Kabat, B.;Foster, N.R.; Torri, V.; et al. Defective mismatch repair as a predictive marker for lack of efficacy of fluoruracil-based adjuvant therapy in colon cancer.
J. Clin. Oncol. 2010, 28, 3219–322


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