spongebob

Obviously I am not spongebob but I wanted to write because I just asked my DR about this. Since I am so young with this cancer I am very concerned about my children. I spoke with a genetic counselor this week and they took a very extensive family medical history and then told me that the 1st step is that they can test the tumor that was removed and from that they can tell me if it is hereditary or not. If it is then I will have to go in and they will do a full DNA test and then let me know what the plan of action should be to make sure the kids will be screened at the right time. If it comes back negative then I guess it stops there. They told me that if it comes back positive for being hereditary then the kids have a 50% chance of developing the polyps. I am still pretty ignorant about this process but I just wanted to share what I learned this week. Hope spongebob can help more!

Ahoy, Danielle -

Sorry for the slow response - I am taking a couple of college classes and that's sucking up most of my spare time that I would otherwise spend here at CSN.

Anyway, yes, I do have hereditary colon cancer. It's called "Lynch Syndrome" or HNPCC (Hereditary Non-polyposis Colo-rectal Cancer). I did have genetic testing done. Here's how it happened for me: I had a colonoscopy done at Bethesda Naval Medical Center; they are right across the street from the National Institute of Health and the National Cancer Institute. Due to the strong family history and nature of my symptoms (tumors on the right side, young, etc., the research director for the Human Genome Mapping Project was knocking on my door within 30 minutes of my diagnosis. She wanted my entrails after they cut them out of me. they tested my tumors and concluded that I have HNPCC so they wanted to do genetic testing on my mom and my step-sister. When my mom came up positive for HNPCC they wanted to do testing on her brothers and sisters. When some of them came up positive, they wanted to do testing on the kids of those who were positive. Consiering they tested almost 20 people out of that family grouping, they got a lot of good data - and the testing was all free (for us). That was a good thing (the data and free testing) ... BUT

I am NOT a proponent of genetic testing. Here's why:

1. It is VERY expensive. Tests range from ~$500 to ~$5,000. There are 5-7 different genetic mutations that can cause HNPCC. Unless you test for each and every one, you will not know for sure whether you have it or not. Testing for each one costs upwards of $5,000 and I would DEFINITELY NOT try to get insurance to pay for it - more on that in a minute (even though you don't have health insurance, you should still read the insurance thing I'm gonna write below)

2. OK, so you now know you "have" or "don't have" a genetic predisposition to colon cancer. What did that do for you - except transfer $5,000 from your pocket to a lab's pocket? All it will do is either (a) compel you to do what you should be doing ANYWAY, which is doing rigorous screening based on your family history or (b) has given you a sense of complacency so that, believing you "won't get colon cancer" you don't keep up with robust screening like you should be doing.

3. I have witnessed first-hand the completely irrational behavior of people when they get the results of genetic testing. It's amazing. One cousin who tested positive for the gene wanted to - at the ripe old age of 32 - rush out and have a therapeutic historectomy. Fortunately we talked her down from that ledge. Others went through an amazing display of guilt because they (a) "Gave" their kids cancer or (b) they didn't get cancer but their sibling did. Anger, jealousy, remorse - it would make a great episode of Jerry Springer.

4. Now, about insurance. Currently there are laws on the books which protect your medcal privacy from insurance companies, but laws can get repealed or reauthorized with a different spin, etc. The thought of a "pre-existing condition" comes to my mind when I think about genetic cancer and health insurance. I don't want to fall into that trap (part of the reason I am still in the military after 26 years. I could have retired 5 years ago but I don't think I could have gotten health or life insurance).

PLEASE... think long and hard about it before you do genetic testing. Think outside the box. Think about ramifications outside of your own personal space and immediate situation. Keep on getting tested - Figg Tree is a wonderful organization (by the way they were a sponsor of the 2006 Colondar!). If you are hell-bent that you want genetic testing, you are a good canidate for the NCI testing group - if it is still open. If you decide you want to do it, contact me and I will get you in touch with them - although, again, I HIGHLY recommend against it.

I will now step down off my soap box.

- Sponge

spongebob said:

Ahoy, Danielle -

Sorry for the slow response - I am taking a couple of college classes and that's sucking up most of my spare time that I would otherwise spend here at CSN.

Anyway, yes, I do have hereditary colon cancer. It's called "Lynch Syndrome" or HNPCC (Hereditary Non-polyposis Colo-rectal Cancer). I did have genetic testing done. Here's how it happened for me: I had a colonoscopy done at Bethesda Naval Medical Center; they are right across the street from the National Institute of Health and the National Cancer Institute. Due to the strong family history and nature of my symptoms (tumors on the right side, young, etc., the research director for the Human Genome Mapping Project was knocking on my door within 30 minutes of my diagnosis. She wanted my entrails after they cut them out of me. they tested my tumors and concluded that I have HNPCC so they wanted to do genetic testing on my mom and my step-sister. When my mom came up positive for HNPCC they wanted to do testing on her brothers and sisters. When some of them came up positive, they wanted to do testing on the kids of those who were positive. Consiering they tested almost 20 people out of that family grouping, they got a lot of good data - and the testing was all free (for us). That was a good thing (the data and free testing) ... BUT

I am NOT a proponent of genetic testing. Here's why:

1. It is VERY expensive. Tests range from ~$500 to ~$5,000. There are 5-7 different genetic mutations that can cause HNPCC. Unless you test for each and every one, you will not know for sure whether you have it or not. Testing for each one costs upwards of $5,000 and I would DEFINITELY NOT try to get insurance to pay for it - more on that in a minute (even though you don't have health insurance, you should still read the insurance thing I'm gonna write below)

2. OK, so you now know you "have" or "don't have" a genetic predisposition to colon cancer. What did that do for you - except transfer $5,000 from your pocket to a lab's pocket? All it will do is either (a) compel you to do what you should be doing ANYWAY, which is doing rigorous screening based on your family history or (b) has given you a sense of complacency so that, believing you "won't get colon cancer" you don't keep up with robust screening like you should be doing.

3. I have witnessed first-hand the completely irrational behavior of people when they get the results of genetic testing. It's amazing. One cousin who tested positive for the gene wanted to - at the ripe old age of 32 - rush out and have a therapeutic historectomy. Fortunately we talked her down from that ledge. Others went through an amazing display of guilt because they (a) "Gave" their kids cancer or (b) they didn't get cancer but their sibling did. Anger, jealousy, remorse - it would make a great episode of Jerry Springer.

4. Now, about insurance. Currently there are laws on the books which protect your medcal privacy from insurance companies, but laws can get repealed or reauthorized with a different spin, etc. The thought of a "pre-existing condition" comes to my mind when I think about genetic cancer and health insurance. I don't want to fall into that trap (part of the reason I am still in the military after 26 years. I could have retired 5 years ago but I don't think I could have gotten health or life insurance).

PLEASE... think long and hard about it before you do genetic testing. Think outside the box. Think about ramifications outside of your own personal space and immediate situation. Keep on getting tested - Figg Tree is a wonderful organization (by the way they were a sponsor of the 2006 Colondar!). If you are hell-bent that you want genetic testing, you are a good canidate for the NCI testing group - if it is still open. If you decide you want to do it, contact me and I will get you in touch with them - although, again, I HIGHLY recommend against it.

I will now step down off my soap box.

- Sponge

Geez, Sponger, thanks for the food for thought. I spoke with my docs about the privacy issues and they ASSURE me the insurance company will know nothing unless I sign a waiver of some sort. Guess I should go back and think this through some more. I want to know for my kids' sake.... not mine.

Patrusha said:

Geez, Sponger, thanks for the food for thought. I spoke with my docs about the privacy issues and they ASSURE me the insurance company will know nothing unless I sign a waiver of some sort. Guess I should go back and think this through some more. I want to know for my kids' sake.... not mine.

Patrusha -

I know that the HIPPA (Health Insurance Patient Privacy Act) keeps your insurance company from making inquiries into your medical profile - unless they're paying for something like genetic testing, which they probably don't cover as a diagnostic but the genesis of which would be intuitive to an underwriter - but, having worked on a fair amount of legislation here in DC over the past several years, I have also seen legislative language morph to suit a particular political climate and I seriously fear the possibility of one day having a "per-existing condition" perclude me from having health insurance cover me for something that is related to HNPCC - and whi the hell really knows what is and isn't related? Who would have the burden of proof? Such a big can of worms. While I would like to have my boys tested and know for their sake, I believe I will opt out for all the reasons I cited and just help them get screened every couple years once they turn 23. Bear in mind, just because you havethe gene - there is only a 50-50 chance they have it (it is "autosomal dominate") and if they have it, it is not a foregone conclusion that it will express itself.

That's just me, though. I encourage you and everyone else to do what your heart tells you is the right thing for you and your family. I just want to state the counterpoint so folks can make an informed decision. Believe me when I say that my position on this comes from - literally - years of serious contemplation of this very subject and I realize that it is not necessarily the most popular viewpoint. The one thing I would urge folks to do, if they do decide to get tested - GET TESTED FOR EVERY POSSIBLE MUTATION lest you arrive on the slippery slope I discussed in my post.

Cheers

- Bob