My plan for my daughters future colonoscopy

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Nik Colon

My plan for my daughters future colonoscopy

Postby Nik Colon » Sat Oct 22, 2016 12:58 am

So, I know this has been discussed, but I wanted to throw out my thoughts and see what you think. They say family should get scoped 10 yrs prior to your dx. I was 39 stage 4. That would mean insurance would cover her at 29, butt...I know from having my own issues for so long, also hers (she was pretty much born constipated and on meds most her life for it) I want her to get her first at 19, that would make it an even 10 b4 her scheduled. Or should I say 24, which is 5 yrs b4? I really want it at 19 tho because her prior issues. So my question, as a parent, what would you do? (She is 13 now)

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BeansMama
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Location: North Carolina

Re: My plan for my daughters future colonoscopy

Postby BeansMama » Sat Oct 22, 2016 2:02 am

As a parent I would push for the earlier colonoscopy considering she already has issues with her bowel.

I have the same thought regarding my daughter. If she has similar bowel issues as me or comes back Lynch positive I will push for her to have them earlier than 30 as well. I would rather they catch anything that may be wrong early.
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

Nik Colon

Re: My plan for my daughters future colonoscopy

Postby Nik Colon » Sat Oct 22, 2016 4:57 am

BeansMama wrote:As a parent I would push for the earlier colonoscopy considering she already has issues with her bowel.

I have the same thought regarding my daughter. If she has similar bowel issues as me or comes back Lynch positive I will push for her to have them earlier than 30 as well. I would rather they catch anything that may be wrong early.

Thanks

Kathy
Posts: 114
Joined: Sat Mar 14, 2009 8:28 pm
Location: New Jersey

Re: My plan for my daughters future colonoscopy

Postby Kathy » Sat Oct 22, 2016 7:46 am

My doctor wanted all my kids tested . My sons were and 21 and 31. My daughter was 26. We had no insurance problems. Perhaps it was the way it was coded. it gave us peace of mind and no what ifs. Talk to your doctor and explain your concerns.

Kathy
Stage 1- resection 9/ 05
Recurrence-2/ 2008 chemo/radiation 5 FU/oxi
APR surgery 7/ 2008- Found spread to liver-Margins not clean
chemo between surgeries
Liver resection and HAI pump-11/ 08 Chemo 6 months
NED 11/08

NED since 11/2008

michelle c
Posts: 1929
Joined: Wed Dec 02, 2009 3:58 am

Re: My plan for my daughters future colonoscopy

Postby michelle c » Sat Oct 22, 2016 7:47 am

I was diagnosed at 43 so that means my kids would have a colonoscopy at 33. However, my GP said that she would send them for a colonoscopy earlier, I think around the age of 25. I'm happy with that, I'd prefer them to get tested earlier.
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair

crazylife
Posts: 256
Joined: Wed Dec 30, 2015 11:29 am

Re: My plan for my daughters future colonoscopy

Postby crazylife » Sat Oct 22, 2016 8:42 am

Nik Colon wrote:So, I know this has been discussed, but I wanted to throw out my thoughts and see what you think. They say family should get scoped 10 yrs prior to your dx. I was 39 stage 4. That would mean insurance would cover her at 29, butt...I know from having my own issues for so long, also hers (she was pretty much born constipated and on meds most her life for it) I want her to get her first at 19, that would make it an even 10 b4 her scheduled. Or should I say 24, which is 5 yrs b4? I really want it at 19 tho because her prior issues. So my question, as a parent, what would you do? (She is 13 now)



I am so with you! My daughter is 6 and always has a tummy ache which scares the shit out of me. I plan to have both scoped at 18 although the oncologist said 31. I also plan to ask their pediatrician to do a stool test. I have read way too many stories about colon cancer at 19, 20, 21 years old.
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)
Right lung surgery, November 2017
Left lung surgery, January 2018
NED - May 2018

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exaussie
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Joined: Sun Jan 19, 2014 1:19 am
Location: Silverton OR
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Re: My plan for my daughters future colonoscopy

Postby exaussie » Sat Oct 22, 2016 10:21 am

All I had to do was tell my girls Dr the fact their brother had stage 4 at 24 yrs of age and they prescribed colonoscopies. My girls ages were 29, 23 17, 16. 2 older girls are every year for 3 yrs, my younger ones are every 3 yrs. 29, 23 and 16 yr Olds had at least one polyp.
Go with your gut, push hard if you have to to get them scoped.
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

Andrea1976
Posts: 384
Joined: Sun Jan 03, 2016 10:32 am

Re: My plan for my daughters future colonoscopy

Postby Andrea1976 » Sat Oct 22, 2016 1:20 pm

I had malignant polyp at 39. Based on size it was growing there since my 20s - according to Cancer Center. My kids almost 15 and 13 will start colonoscopy no later than 25. i am planing on my older one probably at 22 once she is out of college. She will play a sport in college - will be busy. But after that it's time for 1st colonoscopy:-)

crazylife
Posts: 256
Joined: Wed Dec 30, 2015 11:29 am

Re: My plan for my daughters future colonoscopy

Postby crazylife » Sat Oct 22, 2016 2:08 pm

I tell mine - on your 21st birthday I'll take you out for a drink after your colonscopy!. I try to find the humor in this nightmare :(
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)
Right lung surgery, November 2017
Left lung surgery, January 2018
NED - May 2018

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WriterGirl1969
Posts: 524
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: My plan for my daughters future colonoscopy

Postby WriterGirl1969 » Sat Oct 22, 2016 6:51 pm

You seem like you are already thinking you'd prefer to go earlier. Why doubt yourself? Better to do it for nothing, than to miss something. Right? As a mom diagnosed at 46, my 5-year-old son will be recommended at 36. I will *DEFINITELY* push to get him checked in his twenties instead. Definitely.
--Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

Nik Colon

Re: My plan for my daughters future colonoscopy

Postby Nik Colon » Sat Oct 22, 2016 9:01 pm

Thanks for the replies

Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: My plan for my daughters future colonoscopy

Postby Pita » Sat Oct 22, 2016 9:45 pm

Nik Colon wrote:They say family should get scoped 10 yrs prior to your dx. I was 39 stage 4. That would mean insurance would cover her at 29,


Nik is this only if you're Lynch positive or all who have CRC? I was dx at 69, so that's pretty old for my daughter at 59, but I am Lynch negative. Thx
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 ??? :evil:
2/21/17 Folfuri & Avastin

Nik Colon

Re: My plan for my daughters future colonoscopy

Postby Nik Colon » Sat Oct 22, 2016 11:11 pm

Pita wrote:
Nik Colon wrote:They say family should get scoped 10 yrs prior to your dx. I was 39 stage 4. That would mean insurance would cover her at 29,


Nik is this only if you're Lynch positive or all who have CRC? I was dx at 69, so that's pretty old for my daughter at 59, but I am Lynch negative. Thx

All, since you were 69 and 10 yrs is 59, they would suggest the standard then....50, but I feel 50 is still too late as more and more are getting it earlier.

Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: My plan for my daughters future colonoscopy

Postby Pita » Sat Oct 22, 2016 11:45 pm

Thanks Nik. :) I think she's thinking of getting one soon, she is 48 and I have no siblings. I'm happy to say that some of my friends and in-laws have gotten colonoscopies since I've been dx.
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 ??? :evil:
2/21/17 Folfuri & Avastin


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