Because of family history son is getting colonoscopy

[MamaN]

Just got back from an appointment with children med center. They discused family history :me colon cancer at 45 but bleeding started at 35. Husband precancerous polp at 24 . Mom got colonoscopy at 60 yrs old and had 60 polyps.

So because of all this my 14 year old son is going to get his first colonoscopy and endoscopy at this young age this summer! They want me to get genetic testing and always put it off. because they wanted me to do it while I was on chemo and i kept canceling appt. because I never felt well enough. Now that I'm better is it still a good idea to look into genetic testing, they were talking about fap and lynch. I'm torn on this subject. Not sure what to do about genetic testing my onc at the time said it was very expensive and me being sick with cancer already put us in the poor house! Wondering what to do?

[exaussie]

My girls have had colonoscopies they were 17 and 15 pediatric GI s are so good with younger ones. Ours even said he'd keep them as patients til.they turn 22!
I would do genetic testing if it's not a financial hardship. We know that for us there's no link yet. That's not to say that in the next few years they discover more genetic markers. We were told we'd get informed as necessary when more is discovered.

[MamaN]

Thanks exaussie
My sons Pedatrian said he should be looked at as soon as possible! Even with no symptoms. I would not want him or any one else to go through this colon cancer! If he starts earlier screening the better ! and I feel good about this decision! He already had dysplatic mole removed this summer! I'm not taking any chances! So sorry about your son. I know when I got diagnosed they told me to tell my brother and sister to get checked, my sister did and she had precancerous polyp removed! My brother just stick his head in the sand and doesn't want to do it!! We even got him a free fobt test still didn't do it or want to talk about it, that makes me sad.
I have been told by two drs now to do genetic testing I'm just so confused by this testing thing. I had asked my surgeon to check for lynch last year . While i was getting another colonoscopy he still had sample tumor on slides and can do that. but never heard anything I guess I call them tomorrow !

[midlifemom]

MamaN, check, insurance may cover at least some of the testing. I had lynch testing done without knowing about it - insurance paid with no issues. Not sure if they will pay for the current kras testing, but how the doctor codes the need for the testing will help the insurance company decide about coverage.

[MamaN]

Thanks midlifemom
I know right after I had gotten diagnosed ,the hospital I used started automatically started testing any under 50 for lynch. They started it month after I was there so I wasn't included in that . But I did request the test but that was a year ago . I thought I would have heard something by now, I guess I call the office .

[MamaN]

Sorry double post.

[orcasres]

Hi, MamaN,

I do not want to scare you, but Lynch syndrome puts someone at a 50% risk of CRC recurrence, plus a 13% higher risk of endometrial cancer, and higher than normal risk for a number of other cancers, including stomach and kidney and I forget the rest; the only "good news" is that Lynch cancers are statistically less likely to be metatastic. So, if it is at all possible, it is important for you to be tested, and if you are positive then for your family members. Most insurance will cover the testing; it just involves a blood sample (the hardest part was waiting 3 weeks for the results). If you are negative, then your kids do not need to be tested (they should still have the colonoscopy since CRC can run in families that do not have Lynch or FAP) and it will be a relief for you and your children. If you are positive, then your children would be tested which is significantly cheaper since they can narrow down the gene mutation to test for; if they are negative, the results will be a relief for them and if not they can be appropriately diligent with monitoring as they age.

The surgeon really thought I was going to be Lynch positive, based on my age and pathology not family history, so I had a lot of time to research this and met with a genetic counselor as well as being tested. I had already talked with my sister-in-law because my brother had died at 47 and my niece and nephew, along with my sons, would have needed testing if I were positive. I hope that there is a way that insurance can help you with this.

The rule of thumb for first colonoscopies is at 10 years before the first signs of CRC or at the latest age 40; your husband's polyp makes that 14 for your son. For my sons it is 40 and if I had my way they would do it earlier.

I gave a lot of thought about posting this, but I do not think I have provided any information that you would not get from a genetic counselor.

Good luck with all of this. Lois

[MamaN]

Hi orcasres
This is the info I am looking for. Your post is so much appreciated ! Some times I think fear holds me back... But with more knowledge I can move forward and make wiser decisions!

[michele2]

Hey,

Sometimes they are able to tell lynches from the path report. And you might want to check your genetics center around you because when I went in for it they told me since most insurance companies do not pay for it that the company that runs them will charge $300.00 Instead of full price.

[Nik Colon]

MamaN, check, insurance may cover at least some of the testing. I had lynch testing done without knowing about it - insurance paid with no issues. Not sure if they will pay for the current kras testing, but how the doctor codes the need for the testing will help the insurance company decide about coverage.

I had testing done also without knowing and it came back negative but they still wanted me to see genetic counselor for possible 2nd test. I did not have enough cancer in my family that she felt more testing was not needed.

[MamaN]

Hi
It stinks I was told twice by two different drs to get the testing! But my onc did say it expensive ,and it was hard enough just getting through the chemo crap! I will call my onc and start looking into maybe now it's cheaper! Then call the dang surgeon to see if they checked tumor like I had ask!