I am so worried.

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
susie0915
Posts: 847
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: I am so worried.

Postby susie0915 » Wed Oct 10, 2018 7:33 am

This is standard for rectal cancer. As you can see from my signature, after chemo/radiation my surgeon did a sigmoidoscopy and all that was left was scar tissue. A pet scan showed now sign of cancer before surgery. I had an endoscopic ultrasound for staging after the CT scan showed no spread of disease. The cancer is slow growing and as others have said the radiation/chemo does shrink the tumor, sometimes, totally. It sounds as though your mother is in good hands.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

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

Re: I am so worried.

Postby Punky44 » Wed Oct 10, 2018 9:21 am

Thank you all so much for your responses. We trust she is in good hands. (And I feel like I am in good hands by having found all of you.)

Very interesting about the Watch & Wait approach. I told my mom we for sure should seek a second opinion at Mayo if we are lucky enough to have a complete response.
Caregiver to my amazing mom (68)
10/1 DX with rectal cancer (rectosigmoid); CEA 17
10/5 CT results back—Clear liver and lungs
10/9 Consultation with surgeon, scope, MRI
10/11 MRI puts staging at T3N2 but shows involvement in internal right iliac node—need PET scan to confirm

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

Re: I am so worried.

Postby Punky44 » Wed Oct 10, 2018 3:35 pm

My grief and anxiety have just been going haywire today. I have been sick with worry about my mom since last week and also that the gastro recommended I myself have a colonoscopy now at age 34 due to previous episodes of rectal bleeding over the last decade. I obviously will get this scheduled but it just hit me like a ton of bricks today that I could have this too and be living a double nightmare. I can barely put on a happy face for my two little girls. I also noticed my bowel habits have been loose this past week—of course my mom says it’s the anxiety/stress/nerves we’ve been dealing with but I’ve basically convinced myself of the worst today.

I’m sorry for venting; I’m just a total mess.
Caregiver to my amazing mom (68)
10/1 DX with rectal cancer (rectosigmoid); CEA 17
10/5 CT results back—Clear liver and lungs
10/9 Consultation with surgeon, scope, MRI
10/11 MRI puts staging at T3N2 but shows involvement in internal right iliac node—need PET scan to confirm

Trying
Posts: 50
Joined: Sun May 13, 2018 10:11 pm

Re: I am so worried.

Postby Trying » Wed Oct 10, 2018 4:12 pm

This is a good place to vent. Hope you are feeling a bit better. :D
38 yr old single mom of almost 2 yr old.
Colon cancer stage IV 10 liver mets April 2018
Folfox as of June 2018

Phillypatient
Posts: 16
Joined: Sun Aug 05, 2018 11:28 am

Re: I am so worried.

Postby Phillypatient » Wed Oct 10, 2018 5:34 pm

Very interesting about the Watch & Wait approach. I told my mom we for sure should seek a second opinion at Mayo if we are lucky enough to have a complete response.


I cannot emphasize how much you want this to happen. When surgeons are trying to find ways to not cut you up, you know the surgery is brutal!

Good luck and definitely get a second opinion at a place like Mayo!
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

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

Re: I am so worried.

Postby Punky44 » Thu Oct 11, 2018 8:38 am

They just called with MRI results—T3/N2.

But then they said they found a distant enlarged lymph node in the iliac region. She’s stage IV. I can’t breathe. I can’t breathe. God please help us.
Caregiver to my amazing mom (68)
10/1 DX with rectal cancer (rectosigmoid); CEA 17
10/5 CT results back—Clear liver and lungs
10/9 Consultation with surgeon, scope, MRI
10/11 MRI puts staging at T3N2 but shows involvement in internal right iliac node—need PET scan to confirm

tater
Posts: 71
Joined: Wed Jul 19, 2017 5:53 pm

Re: I am so worried.

Postby tater » Mon Oct 15, 2018 12:08 am

Punky44 wrote:They just called with MRI results—T3/N2.

But then they said they found a distant enlarged lymph node in the iliac region. She’s stage IV. I can’t breathe. I can’t breathe. God please help us.


Double check with your doctors. I believe it is the internal iliac it can still be stage three. My wife's was just on the other side of the artery thus making it the external iliac. This along with the tumor growing into the uterus made her stage four. She had a great response to radiation and a good response to chemo. She has been cancer free since last fall.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 LAR, Hysterectomy & External Nodes Removed W/ileostomy
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18
Clear CT and MRI on 2/5/2018
Reversal Surgery 6/26/18

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

Re: I am so worried.

Postby Punky44 » Mon Oct 15, 2018 9:00 am

Thank you tater (I replied to your PM before I saw your reply here.)

Yes they are saying “technically” she’s Stage 3 (or 3.5 according to some in the medical community) because of the internal iliac still being outside the mescorectal area that would typically be removed in surgery.

I am reading promising studies about neoadjuvant chemo (even for stage III) and have consulted with two major cancer centers who acknowledged this approach as well.

Where doctors seem to differ is whether or not they would remove this node in surgery and my goal is to get my mom somewhere that will.
Caregiver to my amazing mom (68)
10/1 DX with rectal cancer (rectosigmoid); CEA 17
10/5 CT results back—Clear liver and lungs
10/9 Consultation with surgeon, scope, MRI
10/11 MRI puts staging at T3N2 but shows involvement in internal right iliac node—need PET scan to confirm

tater
Posts: 71
Joined: Wed Jul 19, 2017 5:53 pm

Re: I am so worried.

Postby tater » Mon Oct 15, 2018 10:29 am

Punky44 wrote:Thank you tater (I replied to your PM before I saw your reply here.)

Yes they are saying “technically” she’s Stage 3 (or 3.5 according to some in the medical community) because of the internal iliac still being outside the mescorectal area that would typically be removed in surgery.

I am reading promising studies about neoadjuvant chemo (even for stage III) and have consulted with two major cancer centers who acknowledged this approach as well.

Where doctors seem to differ is whether or not they would remove this node in surgery and my goal is to get my mom somewhere that will.


There are some trials on rectal cancer stage 3's to not do the radiation and treat it with chemo prior to surgery. It depends on how the tumor responds. We tried to get on that trial but once the biopsy on my wife's external iliac came back positive for RC that sealed our fate and we did not qualify for the trial.
They should be able to remove those nodes. It was questionable if they could remove my wife's as it was next to the artery that feeds her leg and post radiation they said that the node becomes sticky and it is more difficult to remove but they did it successfully.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 LAR, Hysterectomy & External Nodes Removed W/ileostomy
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18
Clear CT and MRI on 2/5/2018
Reversal Surgery 6/26/18

tater
Posts: 71
Joined: Wed Jul 19, 2017 5:53 pm

Re: I am so worried.

Postby tater » Mon Oct 15, 2018 10:48 am

Just to add about the nodes. It depends on what the nodes drain. I believe the internal iliac drain the rectum and the lower pelvis. Those usually come out with the rectum if that needs to be removed. The external iliac drain the leg. My wife is young and in shape and walks about an hour a day and she does have to wear a compression sock as she has minor lymphodema in the leg. Her leg is about 1 cm to 1.5 cm larger than the other so it is a real concern, but it is better than the alternative.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 LAR, Hysterectomy & External Nodes Removed W/ileostomy
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18
Clear CT and MRI on 2/5/2018
Reversal Surgery 6/26/18


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot], martd, Punky44, Yahoo [Bot] and 52 guests