Genetic Testing- Results are Negative
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DarknessEmbraced
- Posts: 3817
- Joined: Sat Nov 01, 2014 4:54 pm
- Facebook Username: Riann Fletcher
- Location: New Brunswick, Canada
Genetic Testing- Results are Negative
All the genetic testing results are negative. So they don't know why I developed cancer at 36 and why I have had 3 polyps since surgery in 2014. One of my Uncles had a dozen polyps removed. I'm relieved that I don't have Lynch or MAP but wish there were answers.
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!
Re: Genetic Testing- Results are Negative
I know how you feel. None of the standard CC risk factors apply to me and I have no family history. I wish I could be this "lucky" with my Lottery tickets!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 13 years NED). Is this real life?
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DarknessEmbraced
- Posts: 3817
- Joined: Sat Nov 01, 2014 4:54 pm
- Facebook Username: Riann Fletcher
- Location: New Brunswick, Canada
Re: Genetic Testing- Results are Negative
I don't know my father or his side of the family so there could be some sort of cancer history on his side. Yes I wish I could be "lucky" with the lottery too!
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!
Re: Genetic Testing- Results are Negative
That's great, DE. So glad to hear you finally got an answer after all this time. It's frustrating to still not know why you grow so many polyps, but Lynch negative is always a good thing. Have a glass of wine and enjoy the happy news!
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo
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Cowgirl918
- Posts: 326
- Joined: Sun Jan 17, 2016 12:55 am
- Location: Indiana
Re: Genetic Testing- Results are Negative
This may be a good thing Darkness although I know you want answers. Celebrate even the tiny victories and take care!
HX Colon Polyps Villious and Tubillovillous
12/29/15 Colonoscopy/Endoscopy - Ascending Colon Mass- Hemicolectomy Scheduled
1/17/2016 Right Hemicolectomy Cancelled
1/25/2016 CT No evidence of other disease
2/12/2016 EMR-ascending colon mass 80%
8/12/2016 EMR #2 ascending colon mass curative
8/13/16 NED
7/26/2023 Neuroendocrine mass small bowel, two mesenteric lymph nodes
9/1/2023 Small bowel resection jejunum and lymph nodes removed mesentery
12/29/15 Colonoscopy/Endoscopy - Ascending Colon Mass- Hemicolectomy Scheduled
1/17/2016 Right Hemicolectomy Cancelled
1/25/2016 CT No evidence of other disease
2/12/2016 EMR-ascending colon mass 80%
8/12/2016 EMR #2 ascending colon mass curative
8/13/16 NED
7/26/2023 Neuroendocrine mass small bowel, two mesenteric lymph nodes
9/1/2023 Small bowel resection jejunum and lymph nodes removed mesentery
Re: Genetic Testing- Results are Negative
Glad you are lynch negative DE. I can only imagine how frustrating it is to still not know why it struck so early and why you are developing polyps.
Hopefully you find an answer somewhere.
Keeping you in my prayers.
Hopefully you find an answer somewhere.
Keeping you in my prayers.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016
Colon Polyps and Diet
DarknessEmbraced wrote:... So they don't know why I developed cancer at 36 and why I have had 3 polyps since surgery in 2014. One of my Uncles had a dozen polyps removed. I'm relieved that I don't have Lynch or MAP, but wish there were answers.
If the answer to your polyp production isn't in your genetic profile, then it might be found in your diet. I'm not saying that it is. I'm just saying that if you are looking for answers, you might want to first look at all of the research linking polyp production to dietary factors.
Here are several such articles:
Colon Polyp Prevention Diet: 5 Tips for Reducing Risk of Polyps
http://www.healwithfood.org/colonpolyps/diet.php
7 Polyp Preventing Foods
http://www.healwithfood.org/colonpolyps/foods.php
Polyp Fighting Recipes
http://www.healwithfood.org/colonpolyps/recipes/
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Alessandria
- Posts: 37
- Joined: Wed Apr 06, 2016 3:18 am
Re: Genetic Testing- Results are Negative
Pretty much identical scenario to me DE. I was told that as they don't know what they don't know with regards to these genetic mutations, watch this space and developments over the next 5 years may shed light. Just because there's no known genetic explanation currently doesn't mean that there isn't one.
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DarknessEmbraced
- Posts: 3817
- Joined: Sat Nov 01, 2014 4:54 pm
- Facebook Username: Riann Fletcher
- Location: New Brunswick, Canada
Re: Genetic Testing- Results are Negative
Thanks Green Tea and Alessandria!*hugs* You're right just because they didn't find a genetic cause doesn't mean there isn't one. I eat fish and seafood but no other meat. It is important to celebrate the small victories too!
Last edited by DarknessEmbraced on Wed Feb 08, 2017 7:11 pm, edited 1 time in total.
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!
Re: Genetic Testing- Results are Negative
Sorry you didn't get the answers you wanted DE, hoping your future remains at a healthy state even without answers, Hugs and prayers to you...
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin #10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ???
2/21/17 Folfuri & Avastin
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin #10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ???
2/21/17 Folfuri & Avastin
Re: Genetic Testing- Results are Negative
DarknessEmbraced wrote:Thanks Green Tea Alessandria!*hugs* You're right just because they didn't find a genetic cause doesn't mean there isn't one. I eat fish and seafood but no other meat. It is important to celebrate the small victories too!
Agreed !
take your wins where you find them !!!
Not having major genetic "issues" is a good thing .. BUTT we all still need to be vigilant and just do what we can
Harmony and best wishes fellow Canuck !
Cheers
CR
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
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DarknessEmbraced
- Posts: 3817
- Joined: Sat Nov 01, 2014 4:54 pm
- Facebook Username: Riann Fletcher
- Location: New Brunswick, Canada
Re: Genetic Testing- Results are Negative
Thanks Pita and CRguy!
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!
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