hnpcc

spongebob

MY 2 CENTS WORTH
Good morning, Michelle -

I haven't been on the board in forever due to demands at work, but HNPCC and genetic testing is a topic that I will usually post my opinion on. If you look back through past posts over the last several years (yep, although quiet lately, I used to be quite the gabber/poster) you will see my opinions, but I'll re-post again:

I was diagnosed with stage 3 colon cancer in 2001. My presentation (36 years old, right side involvement, strong family history of colon cancer) was so "text book" that within 30 minutes of being diagnosed, the director of the the HNPCC study at the National Cancer Institute was knocking on my hospital room door asking for me to donate my tumor to them and seeing if I would be part of the Human Genome Mapping Project by getting myself tested for HNPCC. I agreed, got tested and was found to have HPCC/Lynch Syndrome. As part of the project, my mom and all of her 6 siblings were tested (just about all of them have HNPCC, but only one of her sibs has had cancer - her fight continues - and my mom has fought the dragon 4 times.) Next they tested by sister and the children of my aunts and uncles who tested positive for HNPCC. Several of them came up positive.

Since that time, I have had an opportunity to really think about the prospect of genetic testing. I talk about it a lot with my wife (USAKAT - who also has HNPCC). Katie and I are of like minds. I am not in favor of genetic testing for a number of reasons:

1. What do you gain, medically, by having a VERY expensive test (up to around $5,000 for the full battery of tests for one of 5-7 genetic dfects that can cause HNPCC)? If you test positive, you may never get cancer (look at Katie's 73 year old uncle Jim and my 60 year old uncle Bill). Conversely, if you test nagative, you could still get colon cancer! Non-HNPCC colon cancer isn't limited to the AARP set.

2. What do you stand to lose by having genetic testing done - or as I like to say "asking a question you don't want to hear the answer to"? Here is smattering of my personal observations:

- Survivor guilt. My sister was beside herself with guilt that she didn't get the gene.

- Donor guilt. My mom was besider herself with guilt that she had "given me cancer".

- Anger. I have seen people be angry with their parents for "giving them cancer".

- Crazy stuff. One of my cousins decided she needed a prophylactic hystorectemy at age 32 (before she had had any children of her own) Fortunately we talked her off that ledge and she has had two great kids since.

- Health insurance... Katie and I are in perfect alignment with regard to HIPPA legislation and this administration's demonstrated willingness to overturn past administration's policies, reshape constitutional law to meet specific ends and single-out individuals, and a desire to radically change our national healthcare structure with a bent toward saving money at the peril of individuals. I am not trying to get spun up on a political rant - and I don't want that to follow here, I'm just saying, it is not outside the ralm of the possible for people with pre-existing healthcare issues to not be insurable. Can you get life insurance right now? I couldn't - and it still costs me a bundle of money - thank heaven I am active duty military. Can you get private private health insurance right now? I couldn't - again, thank heaven I'm active duty military. I don't see insurance getting easier to get. Likewise I see a distinct possibility of people being left behind if we implement a national health insurance system.

I'll get down off my soapbox now... hopefully it helps.

Be well.

- SpongeBob

angelsbaby

spongebob said:

MY 2 CENTS WORTH
Good morning, Michelle -

I haven't been on the board in forever due to demands at work, but HNPCC and genetic testing is a topic that I will usually post my opinion on. If you look back through past posts over the last several years (yep, although quiet lately, I used to be quite the gabber/poster) you will see my opinions, but I'll re-post again:

I was diagnosed with stage 3 colon cancer in 2001. My presentation (36 years old, right side involvement, strong family history of colon cancer) was so "text book" that within 30 minutes of being diagnosed, the director of the the HNPCC study at the National Cancer Institute was knocking on my hospital room door asking for me to donate my tumor to them and seeing if I would be part of the Human Genome Mapping Project by getting myself tested for HNPCC. I agreed, got tested and was found to have HPCC/Lynch Syndrome. As part of the project, my mom and all of her 6 siblings were tested (just about all of them have HNPCC, but only one of her sibs has had cancer - her fight continues - and my mom has fought the dragon 4 times.) Next they tested by sister and the children of my aunts and uncles who tested positive for HNPCC. Several of them came up positive.

Since that time, I have had an opportunity to really think about the prospect of genetic testing. I talk about it a lot with my wife (USAKAT - who also has HNPCC). Katie and I are of like minds. I am not in favor of genetic testing for a number of reasons:

1. What do you gain, medically, by having a VERY expensive test (up to around $5,000 for the full battery of tests for one of 5-7 genetic dfects that can cause HNPCC)? If you test positive, you may never get cancer (look at Katie's 73 year old uncle Jim and my 60 year old uncle Bill). Conversely, if you test nagative, you could still get colon cancer! Non-HNPCC colon cancer isn't limited to the AARP set.

2. What do you stand to lose by having genetic testing done - or as I like to say "asking a question you don't want to hear the answer to"? Here is smattering of my personal observations:

- Survivor guilt. My sister was beside herself with guilt that she didn't get the gene.

- Donor guilt. My mom was besider herself with guilt that she had "given me cancer".

- Anger. I have seen people be angry with their parents for "giving them cancer".

- Crazy stuff. One of my cousins decided she needed a prophylactic hystorectemy at age 32 (before she had had any children of her own) Fortunately we talked her off that ledge and she has had two great kids since.

- Health insurance... Katie and I are in perfect alignment with regard to HIPPA legislation and this administration's demonstrated willingness to overturn past administration's policies, reshape constitutional law to meet specific ends and single-out individuals, and a desire to radically change our national healthcare structure with a bent toward saving money at the peril of individuals. I am not trying to get spun up on a political rant - and I don't want that to follow here, I'm just saying, it is not outside the ralm of the possible for people with pre-existing healthcare issues to not be insurable. Can you get life insurance right now? I couldn't - and it still costs me a bundle of money - thank heaven I am active duty military. Can you get private private health insurance right now? I couldn't - again, thank heaven I'm active duty military. I don't see insurance getting easier to get. Likewise I see a distinct possibility of people being left behind if we implement a national health insurance system.

I'll get down off my soapbox now... hopefully it helps.

Be well.

- SpongeBob

SpongeBob
Thanks for the info. You know i have been thinking that we don't really have to do the test i know that angel is positive from his lab work and family history. My 32 yr old son is going for a colonoscopy in about 2 months his dr know about his fathers cancer. So i think just keping an eye on things will do just fine for him.We understand about life insurance and so forth because my husband could not get it either because of his diabetis and cancer thank god for health insurance we have that still. I won't make a big deal about the testing unless they want it.

michelle