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Beckster
Posts: 283
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: New to the forum ...

Postby Beckster » Mon Oct 01, 2018 5:06 am

JMM...

I realize your concern and the need to advocate for yourself. There are high risks that dictate chemo: perforation, obstruction, LVI, PNI, Grade 3/4, less than 12 lymph nodes. The only thing that I can suggest is getting a second pathology on your tumor. Was your pathology done at a Designated Cancer Center https://www.cancer.gov/research/nci-role/cancer-centers? These centers are usually at major cancer centers. When you meet with for the second opinion, you might what to ask. You can always request one. The reason being is that Grade, LVI, and PNI is subjective. Having a second set of eyes would be beneficial. I know people, Stage II, that had a second pathology done on their tumor and the results changed, especially with grade and LVI. In addition, I also agree that you should be tested for MSI-H. By doing these two things, you would have a piece of mind. I did not have a second pathology, butt I wish I did. Not that it would change my mind with treatment, butt it would give me more information needed for recurrence.

Beckster
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17, 12/12/17, 6/18/18 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8
Clear Colonoscopy 10/17 :D

jmn
Posts: 12
Joined: Sat Aug 11, 2018 8:20 pm

Re: New to the forum ...

Postby jmn » Mon Oct 01, 2018 4:56 pm

O Stoma Mia and Beckster,

Thank you both for your very helpful posts. I appreciate your knowledge and firsthand experience, and I have read all the material you shared with me.

I have confirmed that Memorial Sloan Kettering will provide a second pathology evaluation as part of the overall second-opinion consultation. I do not know my MSI-H or MSS status, but my contact at MSK told me that Dr. Saltz may order MMR/MSI testing as part of his review of my case.

JMN
DX: CC, 7-9-18 @ age 61, male
Severe anemia (4.5 g/dl), 5-11-18; colonoscopy, 6-29-18
Laparoscopic-assisted right hemicolectomy, 7-16-18
G2, moderately differentiated adenocarcinoma in cecum, 4.2 x 3.7 x 0.7 cm
Stage IIB, T4aN0M0
0/24 lymph nodes, LVI present, PNI present, surgical margins clear, MSS
CEA: 3.0 (pre-op, 7-10-18); 0.7 (post-op, 8-8-18)
TX: Xeloda (Capecitabine) monotherapy

jmn
Posts: 12
Joined: Sat Aug 11, 2018 8:20 pm

Re: New to the forum ...

Postby jmn » Sun Oct 14, 2018 11:56 am

Most of my time this past Thursday was spent at Memorial Sloan Kettering in New York—a truly remarkable place. I met with Dr. Leonard Saltz and a few members of his team who explained that their pathologists analyzed my tumor specimen and arrived at a very different diagnosis. They identified several high-risk factors, including extensive tumor budding, small vessel lymphovascular invasion, perineural invasion, and pT4a stage. In contrast, pathologists at my community hospital had identified no high-risk factors (pT3N0), which is why my oncologist recommended surveillance and no further treatment.

Given the presence of multiple high-risk factors, Dr. Saltz recommends that I begin chemotherapy without delay. Specifically, he recommends adjuvant treatment for six months (Xeloda 5000 mg for two weeks followed by a one-week rest period). We’re working out the details, and I expect treatment will begin shortly. I’ll update my signature soon.

I believe everyone confronting cancer should get a second opinion—carefully choosing a doctor who specializes in their type of cancer and is associated with an NCI-designated cancer center. The goal is to prevent diagnostic and staging errors and to obtain accurate and complete information to determine the best course of treatment. In an earlier post, Beckster said that she knows Stage II folks who “had a second pathology done on their tumor and the results changed.” Beckster, you can now add me to that list!
DX: CC, 7-9-18 @ age 61, male
Severe anemia (4.5 g/dl), 5-11-18; colonoscopy, 6-29-18
Laparoscopic-assisted right hemicolectomy, 7-16-18
G2, moderately differentiated adenocarcinoma in cecum, 4.2 x 3.7 x 0.7 cm
Stage IIB, T4aN0M0
0/24 lymph nodes, LVI present, PNI present, surgical margins clear, MSS
CEA: 3.0 (pre-op, 7-10-18); 0.7 (post-op, 8-8-18)
TX: Xeloda (Capecitabine) monotherapy

User avatar
ANDRETEXAS
Posts: 600
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: New to the forum ...

Postby ANDRETEXAS » Sun Oct 14, 2018 1:44 pm

So glad you got a second opinion. You have a plan. Now, go conquer ! All the best..... Andre
2014
2/10 - Colon resect
2/13 - DX- Stg IIIb
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy

ONE DAY AT A TIME !

Beckster
Posts: 283
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: New to the forum ...

Postby Beckster » Sun Oct 14, 2018 3:24 pm

jmn wrote:Most of my time this past Thursday was spent at Memorial Sloan Kettering in New York—a truly remarkable place. I met with Dr. Leonard Saltz and a few members of his team who explained that their pathologists analyzed my tumor specimen and arrived at a very different diagnosis. They identified several high-risk factors, including extensive tumor budding, small vessel lymphovascular invasion, perineural invasion, and pT4a stage. In contrast, pathologists at my community hospital had identified no high-risk factors (pT3N0), which is why my oncologist recommended surveillance and no further treatment.

Given the presence of multiple high-risk factors, Dr. Saltz recommends that I begin chemotherapy without delay. Specifically, he recommends adjuvant treatment for six months (Xeloda 5000 mg for two weeks followed by a one-week rest period). We’re working out the details, and I expect treatment will begin shortly. I’ll update my signature soon.

I believe everyone confronting cancer should get a second opinion—carefully choosing a doctor who specializes in their type of cancer and is associated with an NCI-designated cancer center. The goal is to prevent diagnostic and staging errors and to obtain accurate and complete information to determine the best course of treatment. In an earlier post, Beckster said that she knows Stage II folks who “had a second pathology done on their tumor and the results changed.” Beckster, you can now add me to that list!



Wow! What a difference in pathology! So glad you went for a second opinion....now you have a plan. I was on Xeloda for 6 months too. 3000mg for 2 weeks and than one week off for a total of 8 cycles. Xeloda was very doable. If you have any questions, message me!
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17, 12/12/17, 6/18/18 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8
Clear Colonoscopy 10/17 :D


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