Got post-op staging

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SilverWedding
Posts: 66
Joined: Sat May 18, 2019 5:54 am
Facebook Username: Cynthia Harding Marshall

Got post-op staging

Postby SilverWedding » Tue Oct 01, 2019 11:23 am

So, i was expecting to hear complete path response, but didn’t. Crushing.

Stage 3B

6/22 lymph nodes positive

Next up: four months chemo

:(

How much chance do we have?
Last edited by SilverWedding on Tue Oct 01, 2019 3:15 pm, edited 1 time in total.
5/19 - DH - 50s, RC 5+cm at dentate line extending to rectal vau
6/19 - Neoadjuvant Xeloda with radiation 6 weeks
9/19 - Restorative Proctectomy, J-Pouch Coloanal Anastomosis, Loop Ileostomy with Appendectomy
10/19 - ypT3N2aM0
10/19 - Adenocarcinoma, moderately differentiated. Deep ulcerated 2.0 cm. Stage 3B with 6/22 lymph nodes positive
Next up: 4 months chemo suggested

Gravelyguy
Posts: 229
Joined: Thu Jul 05, 2018 6:03 pm

Re: Got post-op staging

Postby Gravelyguy » Tue Oct 01, 2019 11:49 am

Silver wedding,

I would not be discouraged. My post op pathology report showed 1 lymph positive for cancer and a focal spot of cancer in my rectum, but they had taken it all out. There was no cancer left in me! My 2 year surgery anniversary will be in a couple days. I have been cancer free since then.

The 6 positive lymph nodes is not as good as no lymph nodes but better than 20 positive lymph nodes. You need to be more concerned when they can't get good margins or there is so much cancer found that they can't get it all out. Even then there are treatments they can try.

The post op chemo is there to get any cancer cells that may be circulating around. Your husband has this!

Dave
Last edited by Gravelyguy on Tue Oct 01, 2019 11:57 am, edited 1 time in total.
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

Claudine
Posts: 131
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Got post-op staging

Postby Claudine » Tue Oct 01, 2019 11:56 am

Stage 3 isn't as good as stages 1 or 2 but better than stage 4, and yet, there are many in this forum who were stage 4 and are now NED, so there's always lots of hope! Hang in there XXX
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, 17, 10, 6.4, 5, 4.8, 4.2, 3.6, 3.2, 3.3, 3.2, 3.7, 4.3, 4.2, 4.2, 5.0
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

jep
Posts: 174
Joined: Sun Jun 11, 2017 7:45 pm

Re: Got post-op staging

Postby jep » Tue Oct 01, 2019 2:43 pm

I’m sorry that you didn’t get better news....my husband had a similar report with 8/20 nodes involved....he would have been staged 3B if it weren’t for 1 distant node that pushed him to stage 4....This is devastating news, but you have a lot to be hopeful about....the surgeon may have gotten everything out, and the mop up chemo will do its job....I think our one regret is not pushing for maintenance chemo after my husband’s initial 6 months of folfox....he had a clean scan and was deemed disease free, but I can’t help but wonder where we would be right now if he had done the maintenance....also, there are so many options now and in the years to come....we are waiting to hear about a spot in a clinical trial....do you know what chemo he will be getting?
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps removed
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery scheduled: 8/21/19 (surgery aborted)

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SilverWedding
Posts: 66
Joined: Sat May 18, 2019 5:54 am
Facebook Username: Cynthia Harding Marshall

Re: Got post-op staging

Postby SilverWedding » Tue Oct 01, 2019 7:53 pm

Dave, Claudine, Jep -

Thank you for giving me hope. I’m just shocked. I was able to get the full report and have updated my signature. The report doesn’t give that TNM info that I can find.

My hubby didn’t find out type of chemo. All he remembers is a port goes in, then every 2 weeks he gets chemo over a four or so hour period, then he goes home with a pump that delivers more for 42 hours.

Oncologist said the four months of this would increase his chances by 30%. I can’t believe this is happening to him and us.

I’m going to inquire about Disability. He was laid off just weeks before learning he had cancer. Just so much right now. Praying insurance will cover this next chemo.
5/19 - DH - 50s, RC 5+cm at dentate line extending to rectal vau
6/19 - Neoadjuvant Xeloda with radiation 6 weeks
9/19 - Restorative Proctectomy, J-Pouch Coloanal Anastomosis, Loop Ileostomy with Appendectomy
10/19 - ypT3N2aM0
10/19 - Adenocarcinoma, moderately differentiated. Deep ulcerated 2.0 cm. Stage 3B with 6/22 lymph nodes positive
Next up: 4 months chemo suggested

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SilverWedding
Posts: 66
Joined: Sat May 18, 2019 5:54 am
Facebook Username: Cynthia Harding Marshall

Re: Got post-op staging

Postby SilverWedding » Tue Oct 01, 2019 7:56 pm

Gravelyguy wrote:Silver wedding,

, but they had taken it all out. There was no cancer left in me! My 2 year surgery anniversary will be in a couple days. I have been cancer free since then.

The 6 positive lymph nodes is not as good as no lymph nodes but better than 20 positive lymph nodes. You need to be more concerned when they can't get good margins or there is so much cancer found that they can't get it all out. Even then there are treatments they can try.

The post op chemo is there to get any cancer cells that may be circulating around. Your husband has this!

Dave


This is what I keep forgetting - that hopefully they got it all OUT. And, that you did this, and maybe he can too.

Thank you for this.
5/19 - DH - 50s, RC 5+cm at dentate line extending to rectal vau
6/19 - Neoadjuvant Xeloda with radiation 6 weeks
9/19 - Restorative Proctectomy, J-Pouch Coloanal Anastomosis, Loop Ileostomy with Appendectomy
10/19 - ypT3N2aM0
10/19 - Adenocarcinoma, moderately differentiated. Deep ulcerated 2.0 cm. Stage 3B with 6/22 lymph nodes positive
Next up: 4 months chemo suggested

User avatar
SilverWedding
Posts: 66
Joined: Sat May 18, 2019 5:54 am
Facebook Username: Cynthia Harding Marshall

Re: Got post-op staging

Postby SilverWedding » Tue Oct 01, 2019 7:58 pm

Does “negative margins” mean “clean margins?”
5/19 - DH - 50s, RC 5+cm at dentate line extending to rectal vau
6/19 - Neoadjuvant Xeloda with radiation 6 weeks
9/19 - Restorative Proctectomy, J-Pouch Coloanal Anastomosis, Loop Ileostomy with Appendectomy
10/19 - ypT3N2aM0
10/19 - Adenocarcinoma, moderately differentiated. Deep ulcerated 2.0 cm. Stage 3B with 6/22 lymph nodes positive
Next up: 4 months chemo suggested

jep
Posts: 174
Joined: Sun Jun 11, 2017 7:45 pm

Re: Got post-op staging

Postby jep » Tue Oct 01, 2019 8:13 pm

Yes, I believe that negative margins are the same as clear or clean margins...
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps removed
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery scheduled: 8/21/19 (surgery aborted)

Rock_Robster
Posts: 343
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Got post-op staging

Postby Rock_Robster » Tue Oct 01, 2019 10:33 pm

Absolutely right - the most important thing is that they got negative (clear) margins, and those 6 positive lymph nodes are out! 22 is a good number to sample so there’s a great chance they got it all, and the clean-up chemo can do it’s job on any little stragglers that may be hanging behind.

I was disappointed about having a positive node after a complete metabolic response to chemoradiation; then my surgeon reminded me that, yes it was positive, but it’s also sitting on a pathology table now where it can’t hurt me :).

Good luck for the next phase; fingers crossed it goes nice and smoothly for you both!

Rob
Last edited by Rock_Robster on Tue Oct 01, 2019 11:16 pm, edited 1 time in total.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

boxhill
Posts: 360
Joined: Fri Apr 06, 2018 11:40 am

Re: Got post-op staging

Postby boxhill » Tue Oct 01, 2019 11:14 pm

Oncologist said the four months of this would increase his chances by 30%. I can’t believe this is happening to him and us.


Chances of what?

BTW, it sounds like the chemo is probably FOLFOX, except that the infusion takes a bit over 2 hours, counting the pre-meds, not 4.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

Punky44
Posts: 360
Joined: Mon Oct 01, 2018 4:29 pm

Re: Got post-op staging

Postby Punky44 » Wed Oct 02, 2019 12:42 am

Sorry you didn’t get better news but you still have a situation that is beatable and curable—you got this!

I agree that it sounds like the chemo he will be getting is FOLFOX.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9
6/28/19 Reversal and port out

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Mohrfamily
Posts: 170
Joined: Tue May 22, 2018 4:04 pm

Re: Got post-op staging

Postby Mohrfamily » Wed Oct 02, 2019 4:48 am

SilverWedding wrote:I’m going to inquire about Disability. He was laid off just weeks before learning he had cancer. Just so much right now. Praying insurance will cover this next chemo.


YES! You'd be amazed what you can get disability for nowadays! My husband was in a similar situation. January 2018 2 weeks into the year he was let go (last hired first fired scenario, no one wanted to see him go). He was gearing up to start self employed car hauling and assured me he didn't need to be put on my insurance. By February he had weird abdominal pain (the liver) that seemed to spike with ice cream... cold milk he thought a lactose intolerant thing but when he cut it all out and the pain was better but not gone he agreed to go on my insurance and get a biometric screening. CT scan and biopsy later stage 4 CRC liver dominant. He had unemployment for awhile and then was approved for disability he even broke down and got a handicap tag for his car! He hates the placard so no one tell him I told you.
DH dx officially stage IV with liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
4/3/19 consult radiologist for possible radiation treatment.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection

NHMike
Posts: 2272
Joined: Fri Jul 21, 2017 3:43 am

Re: Got post-op staging

Postby NHMike » Wed Oct 02, 2019 10:55 pm

I was diagnosed over two years ago and they determined that it was also 3B but I think that the survival odds back then were 60-70 percent. I haven't looked at the numbers in a long time but the odds seem to keep improving.

It looks like he has a fairly standard FOLFOX Adjuvant Chemo regimen.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

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Jacques
Posts: 521
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Got post-op staging

Postby Jacques » Fri Oct 04, 2019 8:47 am

SilverWedding wrote:... I was able to get the full report and have updated my signature. The report doesn’t give that TNM info that I can find.

Just a note to say that your updated signature does not contain all of the post-surgery pathology data items normally required for proper staging of a resected colorectal cancer specimen. For example:


Please note that the Pathology Departments of some of the top cancer hospitals in the country -- such as Stanford Cancer Center -- routinely give full pathology reports with all the required data elements addressed, plus some of the optional ones as well.

For example, the Stanford Cancer Center has an in-house, default colon/rectum pathology report template that is much more elaborate than the CAP standard:

http://surgpathcriteria.stanford.edu/gitumors/colorectal-adenocarcinoma/printable.html

.

My question is this: What data elements does your so-called "full report" contain ???

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SilverWedding
Posts: 66
Joined: Sat May 18, 2019 5:54 am
Facebook Username: Cynthia Harding Marshall

Re: Got post-op staging

Postby SilverWedding » Sat Oct 05, 2019 7:06 am

Jacques wrote:
SilverWedding wrote:... I was able to get the full report and have updated my signature. The report doesn’t give that TNM info that I can find.

Just a note to say that your updated signature does not contain all of the post-surgery pathology data items normally required for proper staging of a resected colorectal cancer specimen. For example:


Please note that the Pathology Departments of some of the top cancer hospitals in the country -- such as Stanford Cancer Center -- routinely give full pathology reports with all the required data elements addressed, plus some of the optional ones as well.

For example, the Stanford Cancer Center has an in-house, default colon/rectum pathology report template that is much more elaborate than the CAP standard:

http://surgpathcriteria.stanford.edu/gitumors/colorectal-adenocarcinoma/printable.html

.

My question is this: What data elements does your so-called "full report" contain ???


Jacques - Thank. This is so helpful. I did find in the report this:

Primary Tumor (pt): ypT3
Regional lymph nodes: (pn) ypN2a
Distant Metastasis (pm): n/a

So - is this T3N2M0 ? Should that be on my signature? *

* But it also says something that seems off according to the N2 with Lymph nodes:
Total lymph nodes examined: 22
Total lymph nodes involved: 6
So - wondering why it doesn’t say N6

This was of the rectosigmoid, it says.

Lots of other data is on thjs pathology report entitled “Final Report.”
5/19 - DH - 50s, RC 5+cm at dentate line extending to rectal vau
6/19 - Neoadjuvant Xeloda with radiation 6 weeks
9/19 - Restorative Proctectomy, J-Pouch Coloanal Anastomosis, Loop Ileostomy with Appendectomy
10/19 - ypT3N2aM0
10/19 - Adenocarcinoma, moderately differentiated. Deep ulcerated 2.0 cm. Stage 3B with 6/22 lymph nodes positive
Next up: 4 months chemo suggested


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