Husband recovering from LAR and need opinions on Path report please!

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prayingof3
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Husband recovering from LAR and need opinions on Path report please!

Postby prayingof3 » Fri Oct 20, 2017 9:04 pm

I posted previously because my 49 year old husband was recently diagnosed. I thought everything was moving so slow and then it seemed to move so fast!! I tried to make my signature with basic updates. My husband had his LAR surgery last week laparoscopic. He seems to be doing well except he has lost about 10lbs and he is already skinny! Anyways, had our follow up with the surgeon this week and he gave us the staging. I must say, I left there not feeling very confident in this doctor. To be honest, his bed side manner is awful!! You have to drag information out of him, but he is supposed to be one of the best colorectal surgeons around and has been doing this for 30 years. He basically came in and said, he's stage 3, I got all of the tumor, and he will need chemo and I'm not recommending radiation because of the location. So, since I've been doing my research I started asking questions. I asked what level of stage 3 he was and he looked at me like I had to heads! And also there were small nodes found in his lungs before his surgery through CT and those have not been ruled out as cancer (they are watching them but don't seem very concerned). Found a couple of lesions on his liver also with CT prior to surgery, but those were ruled out with MRI to be benign. He said well, his lymph nodes were negative but he had tumor deposits! I had no idea what that was and he didn't really do a good job explaining. He said we would be hearing from the oncologist within a few days. So, I just asked for a copy of the pathology report so I could review it myself. I also asked for his lab reports. My husband has basically put me in charge of the paperwork and research because he just doesn't want to do it. There was so much on there that the doctor didn't even go over. I was so upset!!! Anyways, several things on there that jumped out at me and have me concerned are the perineural invasion is present, there were 4 tumor deposits, and moderately differentiated tumor. Also the fact that his tumor was a T4a. From what I see he is stage IIIb. If someone could please shine some light on if these are things to really worry about or not or if any of you have experience with this? I have done some research on the tumor deposits and the N1c part of staging and it seems to be pretty new. Also the perineural invasion present seems to be more high risk. Also his CEA was 131 before surgery. Thanks so much!
Caregiver to husband age 49-stage IV
09/17: Colonoscopy and mass found at rectal sigmoid junction partial obstruction
10/17: Laparoscopic LAR surgery
10/17: Pathologic staging from surgery pT4a N1c with 4 tumor deposits, perineural invasion present,14/14 lymph nodes negative, clear margins, moderately-differentiated
11/17: PET scan performed-lesions found in liver and lungs
11/17: Met confirmed to liver
11/17: Restaged to stage IV
11/17: Started FOLFOX-Avastin
12/17: Confirmed KRAS G12V

KimT
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Re: Husband recovering from LAR and need opinions on Path report please!

Postby KimT » Sat Oct 21, 2017 10:11 am

The oncologist is going to determine the treatment plan and staging. Medicine in general is quite compartmented. The surgeon is going to do the surgery, pathology will look at the samples and ultimately the oncologist will look at all the reports and recommend the best course of action. I don't doubt the surgeon had a bad bedside manner but the questions you have are probably outside his scope of practice. His part in your husbands treatment is finished. But it's good you have the reports. Make a list of questions for the oncologist.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

Aqx99
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Re: Husband recovering from LAR and need opinions on Path report please!

Postby Aqx99 » Sat Oct 21, 2017 2:02 pm

Have his oncologist go over the information with you. Sometimes surgeons don't have the best bedside manner.

I lost 15 pounds after surgery, but gained it back once I started eating normal food again. I also have nodules in my lungs that they are not concerned about. My first scan was right after being diagnosed. My second was after I finished chemoradiation and before my surgery. The nodules were unchanged, so they concluded that they were scar tissue from a previous infection.

Keep asking questions until you are satisfied that you have all the information you need.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

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O Stoma Mia
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Re: Husband recovering from LAR and need opinions on Path report please!

Postby O Stoma Mia » Sat Oct 21, 2017 2:41 pm

prayingof3 wrote:... Anyways, several things on there that jumped out at me and have me concerned are the perineural invasion is present, there were 4 tumor deposits, and moderately differentiated tumor. Also the fact that his tumor was a T4a. From what I see he is stage IIIb. If someone could please shine some light on if these are things to really worry about or not or if any of you have experience with this? ... Also his CEA was 131 before surgery. Thanks so much!

It's very good that you are taking a close look at the path report. This report is the key to determining the overall risk profile and then the type of first-line adjuvant therapy to use.

What I would do now is try to list all of the findings that constitute moderate or high risk factors then go from there. You have already mentioned perineural invasion and tumor deposits,as well as an elevated CEA, but there might he others in the report.

Did the report mention surgical margins? Did the report mention the histological type of cancer (e.g., adenocarcinoma)? Did the report mention MSI status (i.e. microsatellite instability)? Did the report mention lymphovascular invasion? Did the report mention tumor budding? Did the report mention whether the tumor was removed as a whole, or in several pieces?

I think you need to go through the report line by line and ask whether each item is a high risk finding or not.

Right now the big issue in my mind is the current post-surgery level of CEA. If the surgeon in fact "got it all" then the CEA should be dropping down into normal range now. Are they planning to do another CEA measurement soon?

prayingof3
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Re: Husband recovering from LAR and need opinions on Path report please!

Postby prayingof3 » Sat Oct 21, 2017 2:56 pm

To answer some of these questions, I looked at the report again. It is adenocarcinoma, clear margins, tumor was whole, there was tumor budding, no lymphovascular invasion. And his high CEA of 131 was prior to his operation. They haven't taken it again since.
Caregiver to husband age 49-stage IV
09/17: Colonoscopy and mass found at rectal sigmoid junction partial obstruction
10/17: Laparoscopic LAR surgery
10/17: Pathologic staging from surgery pT4a N1c with 4 tumor deposits, perineural invasion present,14/14 lymph nodes negative, clear margins, moderately-differentiated
11/17: PET scan performed-lesions found in liver and lungs
11/17: Met confirmed to liver
11/17: Restaged to stage IV
11/17: Started FOLFOX-Avastin
12/17: Confirmed KRAS G12V

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CaliforniaBagMan
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Re: Husband recovering from LAR and need opinions on Path report please!

Postby CaliforniaBagMan » Sun Oct 22, 2017 8:08 am

I don't understand all the terms you have mentioned but his path report after surgery seemed to have many of the same "good" observations as mine. Clear margins is huge, no lymph node involvement as well, moderately differentiated, etc. I am guessing the T4 is the tissue invasiveness which was the same as mine. I was T4 because my tumor had penetrated the colon wall. Again, the clear margins with no lymph node involvement are very good factors.

btw I lost 50 lbs during treatment. Started at 184, about 10 lb overweight. Got down to the 130's just before surgery. So I wouldn't sweat the 10lb loss.
CT guided biopsy on mass - still NED !!!
CT scan finds new 2x3cm mass on 10/09
APR surgery 11/07; NED thereafter
Folfox/radiation 9/07-10/07
DX Stage III rectal cancer 7/07

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O Stoma Mia
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Quesions to ask the oncologist

Postby O Stoma Mia » Sun Oct 22, 2017 2:31 pm

I was wondering how you are doing with your research and if you have an appointment yet with an oncologist.
Have you started working on your list of questions for the oncologist?

Here are some ideas to get you started on a list of questions.
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53889&p=428555#p428555

From my point of view, one of the main questions would be why the CEA was so high prior to surgery. Normally, a CEA of 136 would suggest that something is wrong somewhere, but where could the problem be given that no metastases were found in the lymph nodes and no metastases found in remote organs (M0)?

An oncologist would surely have an opinion on this. Maybe the CEA elevation was due only to the primary tumor that was removed during surgery? Some clarification is needed, I think.

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ocstacy
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Re: Husband recovering from LAR and need opinions on Path report please!

Postby ocstacy » Mon Oct 23, 2017 12:07 am

My husband had his LAR surgery last week laparoscopic. He seems to be doing well except he has lost about 10lbs and he is already skinny! Anyways, had our follow up with the surgeon this week and he gave us the staging.


My mom just had LAR surgery on 10/17 and she is still in the hospital. The nurse seems to think she has possibly a hernia from the surgery which I am not too happy about. i really hope that my mom does not lose any more weight cause she is so skinny already about 113 pounds. How long did it take for your father to recover from surgery? I am nervous about the path results from after the surgery although they said the scans look good and that the radiation did a good job of shrinking it. Prayers to your husband and everyone. Cancer sucks!
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

NHMike
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Re: Husband recovering from LAR and need opinions on Path report please!

Postby NHMike » Mon Oct 23, 2017 8:09 am

ocstacy wrote:
My husband had his LAR surgery last week laparoscopic. He seems to be doing well except he has lost about 10lbs and he is already skinny! Anyways, had our follow up with the surgeon this week and he gave us the staging.


My mom just had LAR surgery on 10/17 and she is still in the hospital. The nurse seems to think she has possibly a hernia from the surgery which I am not too happy about. i really hope that my mom does not lose any more weight cause she is so skinny already about 113 pounds. How long did it take for your father to recover from surgery? I am nervous about the path results from after the surgery although they said the scans look good and that the radiation did a good job of shrinking it. Prayers to your husband and everyone. Cancer sucks!


Hello Stacy,

I'm following three others on another forum and one of them had some complications and she was in the hospital for six days. The other two were in the hospital for the customary four days. They are all getting used to their new normal and I'm following them closely as I will be going through the same thing. There's another guy there that will be doing surgery around the same time as me as well.
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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O Stoma Mia
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Re: Husband recovering from LAR and need opinions on Path report please!

Postby O Stoma Mia » Wed Oct 25, 2017 3:52 am

For your eventual meeting with an oncologist, you could show your oncologist your DH's risk profile based on information you have from the path report, CT scans and lab reports, and then ask for explanations of these factors and ask what kind of first-line adjuvant therapy would be best for this type of risk profile.

High risk factors
1. T4a tumor
2. Perineural invasion (PNI)
3. Tumor budding
4. Tumor deposits (four)
5. Elevated CEA (131 ug/ml)
6. Partial blockage

Low/moderate risk factors
1. Adnenocarcinoma
2. Clear margins
3. 0/14 lymph nodes involved
4. Lymphovascular invasion (LVI)- not present
5. Integrity of tumor: Single tumor segment (no fragments)
6. Moderately differentiated tumor (I.e., low grade tumor)

Not discussed/ not clearly identified
1. MSI status
2. HNPCC status - FAP status (hereditary cancer) Familial Adenomatous Polyposis (FAP) and Hereditary Nonpolyposis Colorectal Cancer (HNPCC),
3. Tumor perforation.
4. Level of bowel obstruction
5. Location of tumor: location of lower edge of tumor; location of upper edge of tumor. Was the tumor 'astride' the recto-sigmoid juction?
6. Any polyps present in the resected specimen?
7. Any biopsy results from the three other large polyps that were found during colonoscopy?
8. Unusual number of shotty lymph nodes in adjacent sigmoid mesentery
9. Soft tissue growth extending into adjacent sigmoid mesentery.

Before your meeting with the oncologist, you can review your path report and compare its content with the elements found in a typical colorectal cancer pathology report template:

Colorectal Cancer Structured Reporting Protocol
Last edited by O Stoma Mia on Tue Oct 29, 2019 3:08 pm, edited 1 time in total.

prayingof3
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Joined: Sun Sep 10, 2017 12:22 pm

Re: Husband recovering from LAR and need opinions on Path report please!

Postby prayingof3 » Sat Oct 28, 2017 9:03 am

Sorry to be so long answering and updating! It's been a crazy few days! We met with the oncologist and we loved him! Finally someone that answered our questions!

So he is scheduled for a PET scan now. The doctor was concerned about his high CEA prior to surgery and it's not coming down very quickly. It's at 93 now (131 before surgery). Also elevated liver enzymes. He will have a port put in in the next couple of weeks and then start chemo the next week. He will be doing FOLFOX every other week for 6 months with the infusion at the center on day 1 and carrying the pump for 2 days after.

We are both just so overwhelmed with all of this still to come but we left the oncologist office feeling very comfortable with him and his team! So that's good! My husband is now just hoping he is able to work his job through all of this as he is the main bread winner. He really worries about this.

Thank you all so much for all the info! This is such a great support system here!
Caregiver to husband age 49-stage IV
09/17: Colonoscopy and mass found at rectal sigmoid junction partial obstruction
10/17: Laparoscopic LAR surgery
10/17: Pathologic staging from surgery pT4a N1c with 4 tumor deposits, perineural invasion present,14/14 lymph nodes negative, clear margins, moderately-differentiated
11/17: PET scan performed-lesions found in liver and lungs
11/17: Met confirmed to liver
11/17: Restaged to stage IV
11/17: Started FOLFOX-Avastin
12/17: Confirmed KRAS G12V

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O Stoma Mia
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Re: Husband recovering from LAR and need opinions on Path report please!

Postby O Stoma Mia » Sat Oct 28, 2017 12:59 pm

If your DH is going to be doing FOLFOX, then here is some information on side effects that you might want to consider:

Side effects management under FOLFOX
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=44542&p=321388#p321388
Last edited by O Stoma Mia on Sat Oct 28, 2017 9:05 pm, edited 1 time in total.

Soccermom2boys
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Re: Husband recovering from LAR and need opinions on Path report please!

Postby Soccermom2boys » Sat Oct 28, 2017 4:41 pm

prayingof3 wrote: My husband is now just hoping he is able to work his job through all of this as he is the main bread winner. He really worries about this.


Glad to hear that you feel good about the path ahead, that really makes a difference mentally. Just wanted to say that when you meet for a chemo teaching session at your cancer center, inquire if your husband can have the small tennis-ball sized pump (will depend on your insurance). I can honestly say no one ever knew I was on chemo because of how small and discreet that pump is. It can easily tuck in a pocket so it keeps out of the way and wasn’t a disturbance with sleeping either, and also made zero noise. Just something to ask about, can’t hurt to ask.

In general, the more treatments you go the more worn down your body gets. He may need to take a day off after he disconnects from the pump several sessions down the road. I hope his employer is understanding, many times they are and work with you. Fingers crossed all goes well for your husband.
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Husband recovering from LAR and need opinions on Path report please!

Postby NHMike » Sat Oct 28, 2017 5:06 pm

prayingof3 wrote: My husband is now just hoping he is able to work his job through all of this as he is the main bread winner. He really worries about this.


I asked the nurse in the chemotrain session the percentage of people on chemo that work while on chemo and she said that the vast majority work through it. I also asked about Emergency Room visits and she said that she hadn't heard of any - this is where chemo causes a problem at night or on weekends bad enough to require emergency room treatment.

I worked full-time through the chemo and radiation but I have the flexibility to work from home and I mainly worked from home for the six weeks. I did sometimes go into the office when there weren't a lot of other people around (early morning, evening, weekend) as the chemo and radiation reduce your white blood counts which can compromise your immune system. I don't believe that I got sick but I was a bit worried about the possibility.

I do know that some people take short-term disability for chemo. I think that age, fitness, job demands and overall health factor into whether people can continue to work through chemo. I do have to take short-term disability for the surgery as it has to be used for illnesses/disabilities longer than a week. I would guess that he took short-term disability for his surgery so he could make an assessment on whether or not he needs to do this.

I did find that I sometimes needed to take a nap during the work day because I was tired. Sometimes a walk fixed the tiredness issue too. It may be that it helps to take one day off per cycle might help for the infusions.

I understand that XELOX will be harder than XELODA for post-surgical chemo and I might have a harder time working while on chemo but I'll do my best in this area. Short-term and long-term disability may be valid options. We all pay for the insurance and I think it reasonable to use it if it's needed.
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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