Genetic Testing

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Swirdfish
Posts: 257
Joined: Sun Jun 19, 2016 3:57 am

Genetic Testing

Postby Swirdfish » Tue Sep 12, 2017 1:17 am

Hi All,

So they rang me again to do genetic testing, I put this off, as I didn't feel the need that I needed it. Lynch was unlikely in my case, and in any regards the kids would be scoped at 25yrs regardless. I know they can test a wide variety of genes, but is this going to be worth the bang for the buck as to say?

Family history does not show much cancer in the family tree.

So how will this help me?

Will this provide anything productive? Has anyone done this route before and was it useful?

Other then that scans next month 6 monthly I hope. So fingers crossed all is well.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

BIG ROB 69
Posts: 55
Joined: Sun Aug 28, 2016 2:00 am
Location: Long Island, NY

Re: Genetic Testing

Postby BIG ROB 69 » Tue Sep 12, 2017 3:28 am

No one in my family has cancer, yet I tested positive for Lynch, which made it possible to start KEYTRUDA, and it has helped. Tumor down over 50% since December, CEA from 800 to 30's, you can read my signature for the rest. Good luck.
3/18/2015 DX CC Stage3/4 49YO MALE IN NEW YORK
Inoperable...hepatic artery
11/15 oper to rem block...colon bypass
4/16 oper to remove scar tissue
5/16 Lynch pos.
10/16 Two bile tubes installed to relieve jaundice
So far I have done the three main chemo drug rounds and on 12/19/16 start Keytruda.
No chemo after 8/3/16 CEA: 10/14/16-409 12/19/16- 887 Mostly my CEA was in the 140-180 range.
CEA: 1/9/17-415 1/30/17-156.2 2/20/17-120.8 3/13/17-98 4/21/17-83.6 5/12/17-64.7 6/1/17-32.1
7/25/17-32.6

veckon
Posts: 84
Joined: Thu Jul 27, 2017 7:44 am

Re: Genetic Testing

Postby veckon » Tue Sep 12, 2017 4:14 am

Lynch is not just about lifetime colorectal risks. That is just the most well known and largest risk. There are a litany or other cancers you have to watch out for. There are also other germline genetic mutations clinically relevant for other cancers.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

susie0915
Posts: 167
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Genetic Testing

Postby susie0915 » Tue Sep 12, 2017 8:25 am

I talked to the genetic counselors as well. Since I didn't have a lot of cancer in my family they told me insurance would not pay for testing, but I could do the Color testing for $250. I asked if they thought was necessary, since my kids will start colonoscopies early because of me, and I'm being scanned and tested all the time.

I talked to my kids, and asked if they would act on the information if something came back positive. It was mostly more for them. After a few weeks of thinking, I decided to go ahead to order the testing kit from Color. Sent my saliva and got results in about three weeks. They also sent results to my genetic doctor. All tests were negative. I'm glad I did it and the doctor told me if anything came back positive proactive testing would be covered by insurance.
57 yr old mother of 3
5/15 DX T3N0MO Stage 2A
6/15 5 wks of radiation/xeloda
7/15 sigmoidoscopy/scar tissue only
8/15 Pet scan NED
9/15 LAR
10/15 Bowel blockage. 3 1/2 weeks in hospital.
early ileo rev since
surgery to repair blockage. 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 nodule onc thinks scar tissue
7/17 no change lung nodule
Currently NED

User avatar
exaussie
Posts: 608
Joined: Sun Jan 19, 2014 1:19 am
Location: Silverton OR
Contact:

Re: Genetic Testing

Postby exaussie » Tue Sep 12, 2017 10:17 am

My son did genetic testing, and there's a new genetic test that my husband will take as it seems it is from that side of the family. As of yet lynch, and all other genetic testing is negative. With my sons aggressive early onset colon cancer we are always going to to whatever genetic test we can to prevent this from ever happening in our family. I would recommend testing, not for you, but for your children and grandchildren. My son was diagnosed stage 4 at age 25, my daughters were tested right away, they were 15, 17, 22 and 29 at the time. Polyps were found in my 15 yr old, my 22 year old and my 29 year old.
DS 26 yrs old diagnosed 6/13 T3N2aM1b
Resection 6/13
6 rounds chemo folfax
12/13 Fissure
hernia surgery 12/13
5 months break
Maintenance chemo 3/14
Crazy growth. Liver failing. Folfox and vectibex 7-29-14
Chemo failure Hospice 8/26
Left us 8/28

DarknessEmbraced
Posts: 2727
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Genetic Testing

Postby DarknessEmbraced » Tue Sep 12, 2017 12:35 pm

I only had genetic testing done because I was 36 when I was diagnosed and also because I don't know the health history on my father's side. I am Lynch Negative and I don't have MAP.
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

Swirdfish
Posts: 257
Joined: Sun Jun 19, 2016 3:57 am

Re: Genetic Testing

Postby Swirdfish » Tue Sep 12, 2017 4:25 pm

Thanks for everyone's replies.

Looks like I'll go ahead with it. I think over here its fully covered payment wise. I guess for me the main objective is to prevent this if possible for my children.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

AussieAssCancer
Posts: 207
Joined: Sat May 21, 2016 10:16 am

Re: Genetic Testing

Postby AussieAssCancer » Tue Sep 12, 2017 7:06 pm

I was referred shortly after my diagnosis.

Went and saw this fellow and was told didn't have Lynch, and none of the other genes that go 'awry' showed anything either.

I agreed to provide them with additional runout material for further testing after surgery but in light of my complete response, that didn't eventuate.

I was slightly different in that there is a history of cancer
on my fathers side, although not bowel cancer. When I asked whether in light of the normality it was just bad luck he replied "Nope, were just not smart enough to know what's happening yet".

It was all covered by Medicare (bulk-billed).

AAC
Dx Oct '15 w/ Stage 3c RC
Nov '15 - Jan '16: 3x FOLFOX and 5wks Chemoradiation w/ Xeloda
March '16: ULAR w/ temp ileostomy
Complete pathological response incl 0/12 nodes
April '16: Clear CT (NED)
May - Aug '16: 9x FOLFOX (dropped Oxaliplatin for final Rd due to neuropathy)
Dec '16: Clear CT (NED)
Feb '17: Ileostomy reversed
Aug '17: Clear CT (NED)

Blog: kickingrectalcancerintheassblog
https://kickingrectalcancerintheassblog.wordpress.com/

Swirdfish
Posts: 257
Joined: Sun Jun 19, 2016 3:57 am

Re: Genetic Testing

Postby Swirdfish » Tue Sep 12, 2017 8:33 pm

AussieAssCancer wrote:I was referred shortly after my diagnosis.

Went and saw this fellow and was told didn't have Lynch, and none of the other genes that go 'awry' showed anything either.

I agreed to provide them with additional runout material for further testing after surgery but in light of my complete response, that didn't eventuate.

I was slightly different in that there is a history of cancer
on my fathers side, although not bowel cancer. When I asked whether in light of the normality it was just bad luck he replied "Nope, were just not smart enough to know what's happening yet".

It was all covered by Medicare (bulk-billed).

AAC


Thanks aussieass.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

Andrea1976
Posts: 363
Joined: Sun Jan 03, 2016 10:32 am

Re: Genetic Testing

Postby Andrea1976 » Tue Sep 12, 2017 11:12 pm

If I remember correctly I was told 99% of cancers are not genetic. Now it says 95%. The more and more genes are discovered... I had all the genetic testing done for all panel of cancers. I was told I could redo it in 10 years. It is important to know if you are Lynch.
Stage I
pedunculate polyp in descending colon
moderately diff adenocarcinoma 0.6 cm
Tumor confined to the head of the polyp
Stalk margin 2 cm negative for dysplasia and malignancy
Polyp removed during colonoscopy 1/15/16
No lymphovascular involved
No surgery
CEA after polyp removal 0.3
Genetic testing negative for colon and breast cancer
39 year old female. I am not celebrating my 40th but waiting for my big 50 birthday party!!!


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