Hello. Newbie here. I went in for a colonscopy last Monday (9/14) as a follow up to what I thought was a bad Crohn's flare several weeks ago that put me in the hospital for a couple days and my GI found a nearly obstructing mass in my colon. Biopsy was sent off and it came back cancerous. Not liver or lung mets and possible local lymph mets showed on CT. Pathology suggests it's a High grade neuroendocrine carcinoma. From what I can tell it's rare. Met with oncologist on Monday (9/21) and will meet with the surgeon tomorrow. The oncologist suggested surgery first as he was not able to tell from the CT is there was cancer in the lymph nodes near by. Will make a final diagnosis and surgical staging after pathology of the resected portion of my colon is tested. Chemo may follow (I'm already considering chemo a forgone conclusion at this point).
Does anyone have any good info on this type of cancer or experience with it?
Thank you.
New here
Re: New here
Welcome newbie dark-horse, sorry you are here, but you came to a good place.
Get with the experts ASAP. Then get a second opinion as necessary. Most importantly: find a skilled Colorectal Surgeon.
I have never heard of a neuroendrocrine carcinoma; so I suggest both searching online (Mayo & NIH) and asking Oncologists.
In the old days they performed surgery first, then afterwords did chemo and radiation. By the time my cancer was discovered, the art was refined to “sterilize the field” before surgery. I.e. radiation while you receive 5FU infusions. Then let it rest. Then remove tumor and affected lymph nodes via surgery. It makes sense that it was asking a body too much, to heal from surgery while bombarding the site with radiation.
May God help you on your journey.
Get with the experts ASAP. Then get a second opinion as necessary. Most importantly: find a skilled Colorectal Surgeon.
I have never heard of a neuroendrocrine carcinoma; so I suggest both searching online (Mayo & NIH) and asking Oncologists.
In the old days they performed surgery first, then afterwords did chemo and radiation. By the time my cancer was discovered, the art was refined to “sterilize the field” before surgery. I.e. radiation while you receive 5FU infusions. Then let it rest. Then remove tumor and affected lymph nodes via surgery. It makes sense that it was asking a body too much, to heal from surgery while bombarding the site with radiation.
May God help you on your journey.
7-18 Stg 4
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radian+5fu Pre-Surg
FOLFOX 8 Cyc,1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing brain Remove
Met to lung. CEA 6.9
Folfiri
CEA 4.5 after 1 chemo
8rds CEA 3 1.8, 2.3,1.7 then up:32
12rd Folfiri
Avastin ev 2 wks
Seizure Anti-seiz meds work-no driving for 6m
4-20PET: Lng spots=Chemo
2-21 tumr gth =Folfiri
Radiation 7-22
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radian+5fu Pre-Surg
FOLFOX 8 Cyc,1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing brain Remove
Met to lung. CEA 6.9
Folfiri
CEA 4.5 after 1 chemo
8rds CEA 3 1.8, 2.3,1.7 then up:32
12rd Folfiri
Avastin ev 2 wks
Seizure Anti-seiz meds work-no driving for 6m
4-20PET: Lng spots=Chemo
2-21 tumr gth =Folfiri
Radiation 7-22
Re: New here
Cured, the treatment you describe is for rectal cancer. The OP apparently has colon cancer, and so will most likely follow the plan of surgery first, followed by chemo or immunotherapy after a number of weeks to heal from surgery. Personally, I've never heard of a person with colon cancer having radiation first. Maybe chemo, but usually that's when there are liver mets, which the OP doesn't appear at this stage to have.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED
-
darkhorse85
- Posts: 3
- Joined: Tue Sep 22, 2020 12:43 pm
Re: New here
Surgery is tomorrow at 7 AM. Looking forward to getting the ball rolling on this. If you have any extra prayers to give, send them to Nebraska! Thank you and I'll post an update when I can.
Re: New here
Sending POSI vibes the surgery went well and you are now healing safely and gently !!!!
Please let us know how you are doing when you are able
Cheers and best wishes
CRguy on the Journey
Please let us know how you are doing when you are able
Cheers and best wishes
CRguy on the Journey
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far
-
darkhorse85
- Posts: 3
- Joined: Tue Sep 22, 2020 12:43 pm
Re: New here
Surgery went well. Surgeon was very pleased with how well I tolerated it. In some pain but not too bad. Been up for a few walks. They’re slow but it feels good to be out of bed. Glad I got that junk out of me. Probably start Chemo in a few weeks. Waiting on pathology to find our plan.
-
DarknessEmbraced
- Posts: 3817
- Joined: Sat Nov 01, 2014 4:54 pm
- Facebook Username: Riann Fletcher
- Location: New Brunswick, Canada
Re: New here
I'm glad your surgery went well and that your recovery is going well.*hugs* 
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured!
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured!
Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”
Who is online
Users browsing this forum: No registered users and 363 guests