Questions to ask genetic counselor

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DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Questions to ask genetic counselor

Postby DarknessEmbraced » Wed May 11, 2016 4:21 pm

I have my genetic counseling session via video conferencing May 24th. They will decide then whether they will do genetic testing. I want genetic testing because of how young I was at diagnosis, and also because I don't know any health history of my father's side of the family since I don't know him or anyone on his side. I filled out a questionnaire that I sent to the center where they do the genetic testing. What sort of questions should I ask them? I also noticed that they do testing for MEN(multiple endocrine neoplasia). I had both parathyroids on the left removed due to hyperparathyroidism and am having issues with high parathyroid hormone levels, borderline high calcium, very low vitamin D and osteoporosis.(again) MEN can cause tumors in other endocrine glands.
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! :)

Nik Colon

Re: Questions to ask genetic counselor

Postby Nik Colon » Wed May 11, 2016 6:27 pm

I don't recall asking questions, just being asked about my family history. If you dont know your dad's side that would be one thing to make sure they know.

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Questions to ask genetic counselor

Postby DarknessEmbraced » Wed May 11, 2016 6:37 pm

I definitely will let them know. I also wrote it on the questionnaire they sent. I've never met my father nor his side. My half sister doesn't know I exist.
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! :)

orcasres
Posts: 836
Joined: Mon Jul 01, 2013 10:23 pm
Location: Orcas Island, WA

Re: Questions to ask genetic counselor

Postby orcasres » Wed May 11, 2016 7:29 pm

My genetic counselor would have strongly encouraged genetic testing with the unknown family history. That is a major factor. Good luck with your appointment. Lois
63 yo F
Colon resection Sept. 2010
pT3N0M0 Stage 2A
Medullary Tumor 6.5cm long
Lymphovascular invasion
Lynch negative
12 FOLFOX 11/2010 to 5/2011 8 w/Oxi
NED so far

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Youngjen81
Posts: 47
Joined: Thu Feb 25, 2016 9:46 am

Re: Questions to ask genetic counselor

Postby Youngjen81 » Wed May 11, 2016 11:03 pm

I also have an appointment for genetic counseling this coming week. I am curious if they can treat the cancer any different knowing the genetic information? I am assuming mine is genetic as my mother also has colorectal cancer.
Good luck to you!
Diagnosed at 35 after 8 years of symptoms
T3n1m0, clinical diagnosis, suspicious spot on iliac crest and left lower lung, unchanged
28 radiation, with Xeloda 3000 mg
LAR with temp ileostomy 6-21-16, pCR!
Ileus and blockage, 12 day hospital stay
Port placement 7-26-16
Fofox begins 8-2-16
Mom to 4 boys(2, 10, 11, 22) they are my world!
Mother diagnosed 5/2016
Clinical stage t3n2m0, cysts on liver and kidneys
Last day of chemoradiation 7-28-16, can't wait! It's hard seeing my Mom in pain

Nik Colon

Re: Questions to ask genetic counselor

Postby Nik Colon » Wed May 11, 2016 11:16 pm

Youngjen81 wrote:I also have an appointment for genetic counseling this coming week. I am curious if they can treat the cancer any different knowing the genetic information? I am assuming mine is genetic as my mother also has colorectal cancer.
Good luck to you!

All I know is certain drugs/tx do not help with certain mutations, and MSI-H is more responsive to them.
You can check the sticky threads for more info, trials, and such. If you have a specific question, I would post a new thread.

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Youngjen81
Posts: 47
Joined: Thu Feb 25, 2016 9:46 am

Re: Questions to ask genetic counselor

Postby Youngjen81 » Thu May 12, 2016 12:23 am

Thank you.
Diagnosed at 35 after 8 years of symptoms
T3n1m0, clinical diagnosis, suspicious spot on iliac crest and left lower lung, unchanged
28 radiation, with Xeloda 3000 mg
LAR with temp ileostomy 6-21-16, pCR!
Ileus and blockage, 12 day hospital stay
Port placement 7-26-16
Fofox begins 8-2-16
Mom to 4 boys(2, 10, 11, 22) they are my world!
Mother diagnosed 5/2016
Clinical stage t3n2m0, cysts on liver and kidneys
Last day of chemoradiation 7-28-16, can't wait! It's hard seeing my Mom in pain

kandj
Posts: 314
Joined: Sun Sep 27, 2015 11:29 am

Re: Questions to ask genetic counselor

Postby kandj » Thu May 12, 2016 8:57 am

For DH, his age alone, even with no family history of CC was enough for them to strongly suggest genetic testing. He had the COLOnext test with Ambry Genetics. We went through Baylor College of Medicine. You and my DH were the same age at diagnosis, but his was more advanced. I don't thinks stage really matters for criteria though. Our counselor filled out this familial mapping sheet while asking DH questions. I don't know if that was part of it of for research purposes (teaching hospital and all. The researcher we met with was working with a geneticist that had been doing this for 30 years).
wife to DH, dx 8/15 stage IV @36, 12+ liver Mets
HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count)
Liver Recurrence 7/2017-radiation
Lung met 10/18 VATS
lung/adrenal gland recurrence 11/19
Adrenal ablation 2/20 VATS 3/20
Radiation: 9/20 adrenal gland, 2/21 pancreatic node
9/2021 liver, 4/22 esophageal node
7/2023 proton therapy: liver
140+ rounds of chemo and counting
Chest nodes, lung nodules, and esophageal nodes currently.

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horizon
Posts: 1669
Joined: Tue Apr 12, 2011 10:10 pm

Re: Questions to ask genetic counselor

Postby horizon » Sun May 15, 2016 9:06 am

I really didn't ask them any questions. They peppered me with lots of questions. If I would have come back positive I know then I would have started asking a lot.
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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