How young is too young for COLONOSCOPY

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Nohogirl
Posts: 116
Joined: Sun Oct 14, 2018 12:15 am

How young is too young for COLONOSCOPY

Postby Nohogirl » Fri Nov 02, 2018 12:19 am

Guys i need your help.

Few months ago while my husband was still getting his chemoradiation, i had another bout of anxiety and shock. It was the day when my at that time 14 year old yelled for me from the restroom to go and check on something. When i went to the restroom, she looked scared and confused and was pointing at the toilet. When i looked down in the toilet i saw clouds of blood all around her poop. Red but not very dark. My heart dropped to my feet. Since my husband was diagnosed, blood in the poop is probably my worst fear and nightmare. It was the first symptom he was having.

My daughter later admitted that her and her sister ate a big bag of Flaming Hot Cheetos the day before and that she was having stomach discomfort after it. And of course as always, the first thing I did is I turned to Google. Was able to find several websites about hot cheetos causing coloration in the toilet mimicking blood and how it sent worried parents and kids to ER only to find out that the color is caused by the chips, etc etc. I honestly didn't buy into that. I even ate a bag of hot cheetos to see if the same thing can happen to me but nothing happened.
So of course, even more terrified, I called her doctor in a panic and asked him to refer us to GI Asap, and because he already knew about my husband's disease, he submitted an authorization request to my Insurance without needing us to go see him first. We were able to see the GI the following week. I explained the GI our family history of CRC. He took an anal culture with a swab and did an instant test on a test strip which showed negative for blood. He then sent us for blood work to check her iron levels, 3 day stool test to detect blood. All came back negative. He told me to rest assured, my daughter doesn't have anything as her tests all came negative, especially my husband's blood genetic test results did not indicate any genetic/inherited mutations. Though he mentioned that because her father was diagnosed with CRC at the age of 49 , she will need to have a colonoscopy 10 years earlier.
I was a little releived for a while, but lately my daughter started complaining about chronic fatigue, is having cold hands and feet, having abdominal pain, burps a lot and is complaining of some indigestion. If these were happening as of last year, the fear of CRC would have been the last thing in my mind. But because we are where we are now, i can't stop thinking about it.

I recently had a long conversation with her GI doctor on the phone discussing all her symptoms, my husband's genetic tests and all the possible screenings my daughter can get.
And although he doesnt think my daughter is at risk for CRC and those symptoms are not representing CRC, he agreed to do upper and lower endoscopy. (He Probably thinks i am crazy and he better do it just to get over with me)

Please tell me if i am overreacting. Am I being ridiculous? Should I push for colonoscopy instead? At the same time I am afraid my girl is too young for colonoscopy. Is 15 too young for colonoscopy? How early is too early?

I must admit, i often overreact about little things related to my kids especially health, and i am afraid this might be one of those times and that I am putting my daughter through unnecessary sedation and colonoscopy without any real cause for it.
Thank you
Last edited by Nohogirl on Fri Nov 02, 2018 8:45 am, edited 1 time in total.
04/18 DH 49 Stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm, including entire rectum out
Path -Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
10/18-02/19 8 cycles of Folfox
02/19 Pet Scan. NED
08/19 Pet Scan NED
08/19 Colonoscopy Clear

radnyc
Posts: 446
Joined: Tue Apr 06, 2010 6:32 pm

Re: How young is too young for COLONOSCOPY

Postby radnyc » Fri Nov 02, 2018 6:20 am

Your reaction is totally understandable, it seems very rare for a 14 year old to have colon cancer, but it has happened. With your husband’s history I would be a little worried too. 14 is not too young for a colonoscopy, if odd symptoms persist I would go that route, better to be sure.
DX Jan 2010, at age 47
Feb - colon resection - 2/17 nodes positive
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April 2011
HAI Pump removed Dec 2015

Soccermom2boys
Posts: 222
Joined: Tue Nov 10, 2015 10:29 pm

Re: How young is too young for COLONOSCOPY

Postby Soccermom2boys » Sat Nov 03, 2018 12:41 am

Based on all of the stool tests, it would seem likely that your daughter does not have CRC—that is what the “head” says, but based on your personal experience with your husband’s health, your “heart” instantly goes in to worst-case scenario. My best friend has FAP which is a genetic condition in which she was a polyp producing factory, until she had her entire colon removed once she was diagnosed. Her two daughters who are now 17 and 19 have each had at least three colonoscopies so far as they get checked every few years to see if they also inherited this gene. So to answer your question, she is not too young for a colonoscopy. I wish you peace with whatever is decided on.
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

Deann
Posts: 55
Joined: Wed Jul 04, 2012 1:42 am

Re: How young is too young for COLONOSCOPY

Postby Deann » Sat Nov 03, 2018 1:48 pm

I too was going to mention FAP. I once met someone who told me a colonoscopy at a young age saved her life because some time in her pre teen years (I forgot her exact age - maybe 12-15) she had bleeding and was diagnosed with FAP and that was the first time I had heard of it. Of course it might be nothing like that in this case, but it's good to know that one can see a physician and see if it is something they'd need to check for/rule out/etc.
Best wishes!

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: How young is too young for COLONOSCOPY

Postby Lee » Sat Nov 03, 2018 3:12 pm

This was many years ago, a women was in her late 20's was diagnosed with colon cancer. It was later determined /learned that she had relatives die at a young age from colon cancer. Butt not body ever talked about it. It was determined that her kids would start getting scoped by age 10.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Nohogirl
Posts: 116
Joined: Sun Oct 14, 2018 12:15 am

Re: How young is too young for COLONOSCOPY

Postby Nohogirl » Sun Nov 04, 2018 11:32 pm

Thank you all. The only thing i am afraid of are the risks associated with the procedure. I dont know what to do
I dont know what's the right thing to do in her situation. which has the highest risk: her having the colonoscopy or not having it? My family thinks i am crazy and that i am putting my poor child through this because of my paranoia.
04/18 DH 49 Stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm, including entire rectum out
Path -Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
10/18-02/19 8 cycles of Folfox
02/19 Pet Scan. NED
08/19 Pet Scan NED
08/19 Colonoscopy Clear

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: How young is too young for COLONOSCOPY

Postby Lee » Mon Nov 05, 2018 12:53 am

I see from your sig line DH was diagnosed at age 49 stage 2A. Try being diagnosed at age29 with stage IV. Her aunt died before seeing age 50. Sorry when it that young, the danger of the procedure are insignificant compare to a cancer diagnoses prior to the age of 30 or 40.

Just my humble opinion. I was 46 with a stage IIIC diagnoses, this came out of no where. No family history, that we have found YET!!!!

All the best,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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

Re: How young is too young for COLONOSCOPY

Postby michelle c » Mon Nov 05, 2018 4:21 am

I'm pretty sure that a lower endoscopy is a colonoscopy and an upper endoscopy is a gastroscopy. It seems that a lot of people get confused and think that an endoscopy is only an upper endoscopy - an endoscopy also includes colonoscopies. Is your daughter still passing blood - if not, it is highly unlikely it is colon cancer butt for peace of mind, you might as well go ahead with both if that is what he said he will do.
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

Nohogirl
Posts: 116
Joined: Sun Oct 14, 2018 12:15 am

Re: How young is too young for COLONOSCOPY

Postby Nohogirl » Mon Nov 05, 2018 4:00 pm

michelle c wrote:I'm pretty sure that a lower endoscopy is a colonoscopy and an upper endoscopy is a gastroscopy. It seems that a lot of people get confused and think that an endoscopy is only an upper endoscopy - an endoscopy also includes colonoscopies. Is your daughter still passing blood - if not, it is highly unlikely it is colon cancer butt for peace of mind, you might as well go ahead with both if that is what he said he will do.

Hi Michelle. Thanks for your reply.
Yes, you are right. I confirmed with her GI and he is going to do endoscopy and colonoscopy
My daughter only had that one incident of what looked like blood. And occasional stomach discomfort or abdominal pain. I told her to check the toilet before she flushes and call me if there is anything unusual. She is assuring me it was the coloring from the hot cheetos she ate and not blood. But i can't just pretend i am convinced by a 14 year old and let it go until its too late. My family is not very supportive of my decision to get her scoped and keep telling me that i must be crazy and to leave the poor child alone.
I have convinced myself several times that there is nothing wrong with my child, but then i come to this group, read stories of really young kids diagnosed with colon cancer and start worrying myself sick again.
04/18 DH 49 Stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm, including entire rectum out
Path -Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
10/18-02/19 8 cycles of Folfox
02/19 Pet Scan. NED
08/19 Pet Scan NED
08/19 Colonoscopy Clear

mymom
Posts: 1299
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

Re: How young is too young for COLONOSCOPY

Postby mymom » Tue Nov 06, 2018 11:16 pm

I am like you with my kids health. I don’t think it’s too young for a colonoscopy. That said- and you may think I’m crazy- have her eat those Cheetos again. Then check her poop. She may react differently than you. If it is red again, I wouldn’t worry. If it’s not, do the colonoscopy and put your mind at ease if she continues to have the bloating and burping. And I would start colonoscopies sooner then 10 years before your husbands diagnosis.
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16-current NED
6/22- small spot liver again, ablation oct 2023

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dianetavegia
Posts: 2731
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: How young is too young for COLONOSCOPY

Postby dianetavegia » Tue Nov 13, 2018 6:15 pm

Not long after my original surgery I was at a middle school ball game and was talking with the lady coach. She told me one of her 7th graders had Stage IV colon cancer and they'd removed her whole colon but the parents were demanding it not be discussed, especially with the child because they didn't tell her what was wrong or her chances of dying.

Since then we've met several who had CRC as kids, but all came from families with the different genes that make them prone to cancer. One girl had no large intestine and her mother was going through chemo for breast cancer at the same time she went through chemo for CRC. The mother died and didn't finish.
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

Nohogirl
Posts: 116
Joined: Sun Oct 14, 2018 12:15 am

Re: How young is too young for COLONOSCOPY

Postby Nohogirl » Tue Nov 13, 2018 8:53 pm

dianetavegia wrote:Not long after my original surgery I was at a middle school ball game and was talking with the lady coach. She told me one of her 7th graders had Stage IV colon cancer and they'd removed her whole colon but the parents were demanding it not be discussed, especially with the child because they didn't tell her what was wrong or her chances of dying.

Since then we've met several who had CRC as kids, but all came from families with the different genes that make them prone to cancer. One girl had no large intestine and her mother was going through chemo for breast cancer at the same time she went through chemo for CRC. The mother died and didn't finish.

Oh my god Diane. Thats so sad. Just thinking about it makes me go crazy. The doctor was trying to convince me that my daughter is not at risk for CRC. While i pray and hope that's the case, i can't be calm until she gets tested. I have already made and appointment for her colonoscopy and endoscopy to happen in December.

Once my younger one who just turned nine is about her sister's age she is next to be scoped.
04/18 DH 49 Stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm, including entire rectum out
Path -Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
10/18-02/19 8 cycles of Folfox
02/19 Pet Scan. NED
08/19 Pet Scan NED
08/19 Colonoscopy Clear

Nohogirl
Posts: 116
Joined: Sun Oct 14, 2018 12:15 am

Re: How young is too young for COLONOSCOPY

Postby Nohogirl » Tue Nov 13, 2018 8:57 pm

[quote="mymom"]I am like you with my kids health. I don’t think it’s too young for a colonoscopy. That said- and you may think I’m crazy- have her eat those Cheetos again. Then check her poop. She may react differently than you. If it is red again, I wouldn’t worry. If it’s not, do the colonoscopy and put your mind at ease if she continues to have the bloating and burping. And I would start colonoscopies sooner then 10 years before your husbands diagnosis.[/quote

That's a good suggestion mymom, though I want to be 100% sure nothing is wrong in my child and the only way to know is the colonoscopy. Only then I'll have my mind at ease.
04/18 DH 49 Stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm, including entire rectum out
Path -Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
10/18-02/19 8 cycles of Folfox
02/19 Pet Scan. NED
08/19 Pet Scan NED
08/19 Colonoscopy Clear


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