Early age onset colorectal cancer survey: Your responses needed!

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chrisca
Posts: 233
Joined: Wed Dec 07, 2011 10:35 pm
Location: Portland, Oregon

Early age onset colorectal cancer survey: Your responses needed!

Postby chrisca » Mon Jan 08, 2018 3:04 pm

Diagnosed with colorectal cancer under age 50? Your thoughts are needed in this survey:
https://docs.google.com/forms/d/e/1FAIp ... g/viewform

Results will be presented at the Early Age Colorectal Cancer Symposium in April.

-Chris.
Male, false negative colonoscopy age 48
DX: 12/2010 rectal cancer age 51
Stage T3N0M0 2 cm from anal verge
neoadjuvant rad/chemo Xeloda
Rectal resection (open surgery) straight anastomosis
Xeloda round 2
ileostomy reversal 11/2011
Successful adhesion X-lap 8/2013
Ongoing LAR syndrome but NED 6 years

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O Stoma Mia
Posts: 1202
Joined: Sat Jun 22, 2013 6:29 am
Location: Budapest

Re: Early age onset colorectal cancer survey: Your responses needed!

Postby O Stoma Mia » Sat Jan 13, 2018 7:59 am

BUMP

Eleda
Posts: 68
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Early age onset colorectal cancer survey: Your responses needed!

Postby Eleda » Sat Jan 13, 2018 12:54 pm

Done :D :D :D
SWF, 47
Mom to 3 sons 6/8/12
Dec4th colo for intermittent rectal bleeding over the Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV
JAN 3RD started 1650mg Zelda 2xday, concurrent with 28 radiation

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Robino1
Posts: 417
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Early age onset colorectal cancer survey: Your responses needed!

Postby Robino1 » Sat Jan 13, 2018 1:28 pm

Unfortunately I was diagnosed at 53. I more than likely already had cancer before I was 50 but did not yet know it.

Thank you all that are eligible for taking the survey.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
12/8/17 Markedly decr ant peritoneal nodularity since 8/29/17 compat w/ marked posi respns to therapy
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8
BRAF V600e

Beccaschocked
Posts: 20
Joined: Mon Oct 30, 2017 7:33 pm
Facebook Username: Becca Fender schock

Re: Early age onset colorectal cancer survey: Your responses needed!

Postby Beccaschocked » Tue Jan 16, 2018 5:07 pm

Done :D
Dx @ 32, mom to 6 week old and 2 year old (now 3 & 5)
March 2015 stage IV colon cancer Mets to liver. CEA > 8,000.
April 2015- June 15; 3 infusions folfoxiri +avastin, 4 infusions folfox
July 2015 colon & liver resection followed by 6 infusions of folfiri
January 2016-May 2017 NED (5mm lung nodule stable)
October 2017- growing lung nodule 12mm from 5mm-Confirmed recurrence - CEA 2.5
November 2017- lobectomy- no chemo
January 2018- CT & PET back to NED. CEA 1.3; 1.4

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WriterGirl1969
Posts: 489
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Early age onset colorectal cancer survey: Your responses needed!

Postby WriterGirl1969 » Tue Jan 16, 2018 9:42 pm

Done.
DX 3/4/2016 Colon Cancer; age 46 Mom of 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Left Hemi
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
3/6/17 CT clear; 4/17/18 CT clear;
NED 2 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

CAGirl
Posts: 39
Joined: Fri Aug 25, 2017 4:55 pm

Re: Early age onset colorectal cancer survey: Your responses needed!

Postby CAGirl » Tue Jan 16, 2018 10:13 pm

Done. Thanks for the bump and the nudge.
Dx 2/2017, age 45, 2 kids: 6 yrs & 3 yrs
History of Crohn's disease - dx in 1997; in remission, thus no colonoscopy in over 10 years
Anemia dx 11/16: GI doc assured me "the likelihood of colon cancer" was "very low".
Stage 3C - T3N2b
8/64 lymph nodes; clear margins surgery 3/17
12 cycles of Folfox 4/17-9/17
3-month CT scan midway through chemo, no changes
2-3-month CT scan post chemo 11/17 slightly larger lung nodule (incr. from 7mm to 8 or 9mm)
follow-up CT scan 3/18 - NED!

lauragb
Posts: 899
Joined: Sun Aug 28, 2011 5:25 pm

Re: Early age onset colorectal cancer survey: Your responses needed!

Postby lauragb » Wed Jan 17, 2018 10:26 pm

Hi Chris. I noticed in your signature that you had a false negative colonoscopy before finally being diagnosed. That also happened to me at age 48, already had symptoms and then did not get diagnosed until age 53. My 5 cm tumor was also 2 cm from anal verge. Anyway, I wonder if location plays a part in false negatives. Because I already had symptoms, I consider myself under 50 when the cancer developed. Was your tumor also large by the time it was found? Our stories are similar so I was curious. Glad you are NED. Gratefully, I am too, and also have LARS.

Here's to staying NED.
Laura
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16

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mmblz
Posts: 48
Joined: Sat Oct 10, 2015 3:03 pm

Re: Early age onset colorectal cancer survey: Your responses needed!

Postby mmblz » Sat Jan 20, 2018 4:11 pm

Done.
Really, twitter for the online discussion? I'm not THAT young. Under 50 yes, not under 25 ROFL.
38yo married 13 years. 4 kids 9, 7, 5, 3
2015-09-21 colonoscopy finds tumor in sigmoid, partial obstruction
2015-09-22 CT no mets, path G2 adenocarcinoma, CEA 1.2
2015-09-29 lap hemicolectomy at MSKCC
2015-10-06 pT3 N1a M0 stage IIIB
2015-10-22 folfox started - 12 rounds, last 4 no oxaliplatin
2016-10-27 clear CT !


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