Stupid Q of the Day: How do I know it's really cancer?

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SilverWedding
Posts: 71
Joined: Sat May 18, 2019 5:54 am
Facebook Username: Cynthia Harding Marshall

Stupid Q of the Day: How do I know it's really cancer?

Postby SilverWedding » Wed Sep 11, 2019 4:36 pm

Thank you for the help and insight you've already given. My sweet husband is strengthening so much to be ready for the 9/19 surgery next week. The surgeon will remove tumor (and lymph nodes? how do I know? idk) and says will try to do a J-pouch or D-pouch with a yet-to-be decided type of ostomy. Surgeon says he is trying to save enough muscle in the rectum to make a reversal possible. Then, you all know the deal - harsher chemo via a port one month after surgery.

QUESTION
My husband (and now I) am wondering if he really has cancer. So, since the oncology practice can't make our info portal work, I called and asked for all labwork. I've got the labwork and am oddly hoping to see some confirmation of cancer. So odd - never thought I'd say that. I don't see anything. I was looking for that CEA marker (still am going through it all but not finding) and can't find.

How do I know the tumor is cancerous? Are doctors just making observations to determine cancer at this juncture? Do I call the doctor who did the colonoscopy? I'm not even sure that doctor took a specimen.

Thank you for answering my stupid question,
Cynthia
DH, 56, Sigmoid & rectum
Adenocarcinoma 2cm
 G2: Moderately differentiated
T3N2aM0
Stage IIIb
LN 6/22
5/19 Baseline CEA value - 18.9
Lymphovascular invasion (LVI): present
Perineural invasion (PNI): not identified
Surgical margins: proximal -negative; distal - negative 1.5cm; circumferential - negative 1mm)
MSI status: Waiting‬
Lynch status: ?
KRAS/BRAF: ?
Open Restorative Proctectomy, J-Pouch Coloanal Anastomosis, Loop Ileo w/Appendectomy
Neo-adjuvant Xeloda/radiation
Adjuvant Chemo: to begin 11/19

justin case
Posts: 4258
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Stupid Q of the Day: How do I know it's really cancer?

Postby justin case » Wed Sep 11, 2019 4:58 pm

SilverWedding wrote:Thank you for the help and insight you've already given. My sweet husband is strengthening so much to be ready for the 9/19 surgery next week. The surgeon will remove tumor (and lymph nodes? how do I know? idk) and says will try to do a J-pouch or D-pouch with a yet-to-be decided type of ostomy. Surgeon says he is trying to save enough muscle in the rectum to make a reversal possible. Then, you all know the deal - harsher chemo via a port one month after surgery.

QUESTION
My husband (and now I) am wondering if he really has cancer. So, since the oncology practice can't make our info portal work, I called and asked for all labwork. I've got the labwork and am oddly hoping to see some confirmation of cancer. So odd - never thought I'd say that. I don't see anything. I was looking for that CEA marker (still am going through it all but not finding) and can't find.

How do I know the tumor is cancerous? Are doctors just making observations to determine cancer at this juncture? Do I call the doctor who did the colonoscopy? I'm not even sure that doctor took a specimen.

Thank you for answering my stupid question,
Cynthia

Looking at your husbands history, if there is a tumor in the rectum, that close to the anal verge, it's not unlikely he needs a temp ostomy. That can be fixed , mine was much lower . I never had a CEA marker, but I did have 2 tumors, one in the sigmoid, and one in the rectum, about 3 cm away from the anal verge. . CEA is not recognized with all tumors depending on the person. My surgeon was able to save my sphincter muscles, and I have lived almost 8 years longer .
Last edited by justin case on Wed Sep 11, 2019 5:05 pm, edited 1 time in total.
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

Lee
Posts: 5974
Joined: Sun Apr 16, 2006 4:09 pm

Re: Stupid Q of the Day: How do I know it's really cancer?

Postby Lee » Wed Sep 11, 2019 4:59 pm

SilverWedding wrote:How do I know the tumor is cancerous? Are doctors just making observations to determine cancer at this juncture? Do I call the doctor who did the colonoscopy? I'm not even sure that doctor took a specimen.
Cynthia


These folks have been through medical school. They generally know cancer when they see it. When I was diagnosed, my GI doc told me during my scope procedure they had found cancer. They generally take samples to confirm, but if his doctor told him it was cancer, follow that path.

Good luck, with his upcoming surgery,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

justin case
Posts: 4258
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Stupid Q of the Day: How do I know it's really cancer?

Postby justin case » Wed Sep 11, 2019 5:07 pm

Lee wrote:
SilverWedding wrote:How do I know the tumor is cancerous? Are doctors just making observations to determine cancer at this juncture? Do I call the doctor who did the colonoscopy? I'm not even sure that doctor took a specimen.
Cynthia


These folks have been through medical school. They generally know cancer when they see it. When I was diagnosed, my GI doc told me during my scope procedure they had found cancer. They generally take samples to confirm, but if his doctor told him it was cancer, follow that path.

Good luck, with his upcoming surgery,

Lee

Listen to Lee !
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

User avatar
Jacques
Posts: 563
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Stupid Q of the Day: How do I know it's really cancer?

Postby Jacques » Wed Sep 11, 2019 5:31 pm

SilverWedding wrote:...How do I know the tumor is cancerous? Are doctors just making observations to determine cancer at this juncture? Do I call the doctor who did the colonoscopy? I'm not even sure that doctor took a specimen...

Have they done a post chemo/rad MRI? If so, how large does the tumor look now? How do the inflamed lymph nodes look now? Do you have a copy of the most recent MRI /scan?

If the surgeon is going to do a surgery next week, then I would expect that there would be some sort of recent pelvic scan with contrast in your husband's file.

The information on the type of cancer they found would be in the pathology section of the original colonoscopy report. Do you have a copy of the full colonoscopy report? The lab reports never say anything definitive about cancer. The definitive judgment would come from a biopsy done at the time of the colonoscopy or from a sigmoidoscopy biopsy done shortly thereafter, I think.

What makes your husband think he might not have cancer? Are there any reasons other than the CEA isue you mentioned? If he doesn't have cancer, then what does he think the mass in his rectum is?
Last edited by Jacques on Wed Sep 11, 2019 11:14 pm, edited 1 time in total.

NHMike
Posts: 2335
Joined: Fri Jul 21, 2017 3:43 am

Re: Stupid Q of the Day: How do I know it's really cancer?

Postby NHMike » Wed Sep 11, 2019 8:36 pm

"How do I know it's really cancer?"

Someone should have taken a biopsy (surgically removed a small piece of the tumor) during a colonoscopy or other procedure and sent it to a pathology lab, either in-house or externally. A pathologist will examine the biopsy and make a determination as to whether or not it is cancerous.

In my case, I went to the ER and they took a CT scan and found a mass. That generally means cancer in this area but it was confirmed with a colonoscopy in the afternoon and a pathology report a few days later. Some pathology labs can also do a genomic analysis of the biopsy and tell you what your exact mutation(s) are. That is determining the type of cancer at the molecular level.

The biopsy sample was sent out to the Mayo Clinic for pathology as my local hospital doesn't provide this service.

The colonoscopy was done by a GI doctor and this was before an oncologist was involved. I did get the pathology report in the hospital portal but my oncologist was at another hospital. So the portal at the hospital where my oncologist wouldn't have had the pathology report.
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

MeAndMine
Posts: 149
Joined: Mon Aug 05, 2019 2:40 pm

Re: Stupid Q of the Day: How do I know it's really cancer?

Postby MeAndMine » Thu Sep 12, 2019 4:25 pm

I know it's worrisome to wonder about tests and not know the information you need to know. I'm sure there is a report somewhere that you haven't seen. When I had my colonoscopy, the GI doctor told me it was cancer but he did send in a biopsy. I was so anxious when I got the envelope in the mail but instead of saying what it actually was, it was one piece of paper that just said "abnormal". I thought it was supposed to say the type, the size, something other than just the word "abnormal". I think at the time he wanted to give me the information face to face or something. It took so long to finally get back in to that appointment and that is when he gave me the biopsy paper that said it was a rectal adenocarcinoma.

I find that some doctors don't give you the reports. I'm glad he gave me that one but he never did give me the MRI results and I ended up getting them from the surgeon who got them from the hospital and gave me a copy.

Hopefully there is a report out there somewhere that you can get that tells you the information you need. I know it's all very hard and every day there is something that we have to figure out. I hope your husband is doing well and that he is ready for surgery next week.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

Lee
Posts: 5974
Joined: Sun Apr 16, 2006 4:09 pm

Re: Stupid Q of the Day: How do I know it's really cancer?

Postby Lee » Wed Sep 18, 2019 1:03 pm

justin case wrote:
Lee wrote:
SilverWedding wrote:How do I know the tumor is cancerous? Are doctors just making observations to determine cancer at this juncture? Do I call the doctor who did the colonoscopy? I'm not even sure that doctor took a specimen.
Cynthia


These folks have been through medical school. They generally know cancer when they see it. When I was diagnosed, my GI doc told me during my scope procedure they had found cancer. They generally take samples to confirm, but if his doctor told him it was cancer, follow that path.

Good luck, with his upcoming surgery,

Lee

Listen to Lee !


Waving Hi to Justin Case,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!


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