Mom has CC, refuses genetic test

[hannahw]

Sylive, it's clear you're not interested in the opinions of anyone who doesn't agree with you. It seems you were simply looking for ammunition to use against your Mom and when you didn't find it, you turned on the people you professed to want to hear from. I feel sorry for you. One lifestyle choice that certainly can't improve your health is the choice to harbor anger and resentment towards everyone who doesn't do/say exactly what you want. You're basically poisoning yourself and your kids.

Why ask for opinions when the only opinion you are about is your own? As the saying goes, "if I want your opinion, I'll give it you." Well, you've tried to do that here, but considering that most of the people who have responded are living with active cancer, I'm quite sure they're capable of drawing their own conclusions without your bullying and sarcasm.

It's ironic because almost everything you demand of others, you could rightly expect of yourself if you were willing to take responsibility for your role in the relationship you have with your Mom and the relationship you now have with people on this board. You state that people are all about blaming others, well, look in the mirror. You blame your Mom for just about everything and when you didn't get what you wanted from the people on this board you started blaming the people on this board. There must be something wrong with the people who are responding to you, it couldn't possibly be you.

Good luck to you. With your attitude, it seems genetic mutations are amongst the least of your concerns.

[2L]

The easiest and accepted process for testing is to test the tumor of the individual who has the cancer with MSI/IHC pathology testing. This cost is far less than genetic testing.

If this is positive for characteristics of Lynch syndrome and the different mutated genes, the next step is genetic testing. This testing is paid for by Medicare because of the possible effects upon the future generations. This makes the initial test for the family, much less expensive. In 2008, the costs for Medicare testing, according to a study was: Costs related to full gene sequencing were $2,474. (Genetic Testing) The cost of genetic consultation was $150 and immunohistochemistry was $261. (Pathology lab test) Single gene mutation testing ranged from $683 to $983, depending on the specific mutation. (The cost of testing single gene mutations have dropped dramatically.

For Sylvie to test, if she doesn't have insurance would be very expensive, whereas, there would be no cost for her mother. For each of her children, the cost would be about $400 each for a specific mutation. That is less than the cost of an IPAD.

Sylvie has every right to ask her mother to test...as it is essential to protect families and save lives.

It is unknown whether Sylvie would qualify for the Amsterdam criteria, as there is question of when cancer would have formed in her aunt and an insurance company could make an issue of it...as well, the criteria requires THREE Lynch related cancers in a family, two persons of which are directly related to the third AND one is under the age of 50. We need to remember, only 50% of the population meets that criteria and families are continuing to die...

So, at this time, she does have some options...she can ask Mom if the doctors can pathologically examine the tumor...and then work from there, with assistance from the doctor, the clergy, other members of the family, etc...if she doesn't meet the Amsterdam criteria, she will have to pay for her own test, which is very expensive but a necessary evil.

There are organizations which pay copays and assist with testing costs, including Myriad Genetics, a testing company. For more information on Lynch syndrome, visit Lynch Syndrome International at www.lynchcancers.com.

[Terry]

Sylvie, as I thought about your dilemma today, I kind of understand your wanting to know. The reason I had genetic testing was mostly to find out if I had the Lynch gene (HPNCC, I think that's right). I wanted to know this because there are other cancers involved that you have to be aware of. As far as the colorectal cancer, we already know, gene or no gene it's in the family. Sorry, I did see that you had 2 scopes already I was just typing faster than my mind was working;)

In any case you can't force your mom to do this. Did you find out if they even save the tumor where she's at?

You seem angry with your mom. I'm not going to judge you, because I don't know your mom or you, maybe she treated you horribly growing up. I think these hurt feelings can really come out when one of the people involved are going to die because we always think there's time to resolve the issues. I've had some issues with my mom too. Maybe this would be a good time to go for a visit and talk about this with her if you think it would do any good and if you can afford it, or call her and discuss it. I'm sure this isn't easy for you and I'm sure with the relationship the way it is between the two of you, it seems like she's "doing this to you". Honestly, I don't know why she wouldn't have this done. Have you discussed it with her calmly? Have you told her how important this is to you and her grandchildren and you would be so greatful if she did it?

I hope you can come to terms with this and not hold it against your mother for the rest of your life because it's you that it's going to hurt.

[Kathryn in MN]

I don't believe you've read everything Sylvie has posted. What you've posted isn't applicable here. Her mother lives in Europe. She wouldn't be on Medicare. You would need to know the country she lives in and what her personal medical coverage is, and what protocol is there for genetic testing.

Myriad Genetics did my testing and it was NOT cheap, even with insurance helping to pay for it! And that was fall of 2009. I did have my tumor used for the testing. Not everyone can afford an iPod - I don't think that helps drive home your point at all. Many people do not have that kind of money, even if you think it is nothing. I am not against genetic testing at all. I had it done because there was a chance with my situation for it to be genetic. And if her mother wanted it done, that would be good. But she doesn't. Where do you draw the line? Are you going to force DNA testing on everyone who might have a slight chance of genetic mutations for other cancers or other diseases?

While I am all for testing, I don't think it is something that is absolutely necessary to have done or people will die. In fact, the opposite could be true in some cases. A negative result just might give some people a false sense of security. I do not agree with your statement, "Sylvie has every right to ask her mother to test...as it is essential to protect families and save lives." It isn't essential. Preferred in many cases, and a good tool in many cases, but not essential.

Genetic testing isn't something that will save someone that couldn't be saved without it, in a case like this where the family is already aware of a possible genetic link, and KNOWS they need to inform their doctors, and KNOWS they need to stay on top of aggressive screening. As Sylvie already stated, she wouldn't have her colon removed even if found to have the genetic possibility for Lynch. So the alternative is aggressive screening. Same results for her in the end with testing or no testing.

The easiest and accepted process for testing is to test the tumor of the individual who has the cancer with MSI/IHC pathology testing. This cost is far less than genetic testing.

If this is positive for characteristics of Lynch syndrome and the different mutated genes, the next step is genetic testing. This testing is paid for by Medicare because of the possible effects upon the future generations. This makes the initial test for the family, much less expensive. In 2008, the costs for Medicare testing, according to a study was: Costs related to full gene sequencing were $2,474. (Genetic Testing) The cost of genetic consultation was $150 and immunohistochemistry was $261. (Pathology lab test) Single gene mutation testing ranged from $683 to $983, depending on the specific mutation. (The cost of testing single gene mutations have dropped dramatically.

For Sylvie to test, if she doesn't have insurance would be very expensive, whereas, there would be no cost for her mother. For each of her children, the cost would be about $400 each for a specific mutation. That is less than the cost of an IPAD.

Sylvie has every right to ask her mother to test...as it is essential to protect families and save lives.

It is unknown whether Sylvie would qualify for the Amsterdam criteria, as there is question of when cancer would have formed in her aunt and an insurance company could make an issue of it...as well, the criteria requires THREE Lynch related cancers in a family, two persons of which are directly related to the third AND one is under the age of 50. We need to remember, only 50% of the population meets that criteria and families are continuing to die...

So, at this time, she does have some options...she can ask Mom if the doctors can pathologically examine the tumor...and then work from there, with assistance from the doctor, the clergy, other members of the family, etc...if she doesn't meet the Amsterdam criteria, she will have to pay for her own test, which is very expensive but a necessary evil.

There are organizations which pay copays and assist with testing costs, including Myriad Genetics, a testing company. For more information on Lynch syndrome, visit Lynch Syndrome International at http://www.lynchcancers.com.

[Kathryn in MN]

I suggest you re-read what you posted Sylvie.

You have been scoped (which you posted to tell us), but here you say, "Am I going to listen to getting scoped 10 years prior to when your mother was diagnosed? Of course not." This is just one point of many I can make from your post that show you seem to only be looking for a fight.

You've stated you wouldn't change anything except maybe diet and exercise. Well get of your butt and do that now! It certainly can't hurt you, and might help. With your attitude a negative result from testing could be detrimental - if the only way you are going to live as healthy as you can is if there is a postive result for genetic testing. There is a very high chance you are at increased risk due to genetics, but NOT the type that will show up with testing. It would be very rare for this to be Lynch considering the facts you've given us about ages and dx. Do what you CAN do now. Consider you've had a warning that colon cancer is something to watch for and try to prevent, and do all you can with diet, exercise and screening of yourself - the one person you DO have control over. You can't control the decisions others make, but you can control your own.

Sadly you've chosen to fight with the very people that can understand what you are going through - others that have colon cancer or are caregivers or family members of thsoe with colon cancer. You aren't looking for information or opinions from those who have WAY more experience with this subject than you do. Nope - you were looking for people to validate your opinion of your mother and her choice of not having testing done. And when you didn't get that, you turned ugly.

You don't want to hear any opinion or facts that might disagree with what you have already decided. So I really wonder why did you bother to even post in the first place? Only to provoke people? You've been very rude to people who were only trying to help you and trying to explain things that they DO have knowledge of because they are LIVING it. I personally DID have genetic testing done. Just because I support your mother's right to choose no testing doesn't mean I am ignorant about genetic testing.

While many of us do not agree on many things here, with a very rare exception everyone has other's best interests in mind, and shows respect to each other. It is rather upsetting when someone comes in asking for help and disrespects everyone who doesn't agree with them. If you aren't open to getting feedback and opinions, then DO NOT POST ASKING FOR IT. It really is that simple.

You all have valid points, but I wonder, why is everyone suggesting that the testing will not be meaningful or even valid because so many mutations have not been discovered yet? According to the link I posted, with DNA sequencing, 95% of mutation ARE known, and if one is discovered in one family member, it can be detected if existent in a family member with 100% accuracy.

What is wrong with not wanting a dark cloud over my head the rest of my life, and more importantly, my children? Am I going to listen to getting scoped "10 years prior to when your mother was diagnosed?" Of course not. My mother was diagnosed with advanced cancer. No one knows when it started, so there is a fallacy in this argument right there. Secondly, people barely past their teens can develop cancer. What is the point of waiting for some imaginary age line that needs to be crossed first?

I am sad about my mother, and I don't want her to die, but this is a woman in her 70s who has never had in her entire life a pap smear or a mammogram, because she was always too freaked out or too fatalistic or both to take care of her health. Even the colonoscopy she had as a routine procedure (because of her sister) was half-assed - no pun intended - they only did the lower part of the colon, which means they probably missed the tumor she ended up being diagnosed with. Let's just say my mother's judgment in these things is not entirely trustworthy. She just dismisses certain things with the rationale that something is going to kill you in the end. The problem with that is that she wants me to accept this nonsense as intelligent reasoning and stick my head in the sand as well.

Jaynee, and others who wonder how testing would change anything - no, I would not have anything removed, but I would be more, much more vigilant and proactive as life style figures hugely in colon cancer, including the hereditary kind. It is, I suppose, a matter of how diligent with diet and exercise I would be.

I am sorry, but I really do respect all of you here who are suffering and living with this disease, and I do not mean any disrespect, but I am taken aback by the belligerence of some people here, telling me to drop it and move on. Once you are talking about a potentially hereditary disease, it's not just about the patient anymore who has the disease, it is about the rest of us. She already has it. If she cared at all about us she would make available every possible means to prevent us from getting this disease as well. It isn't guilt over passing this perhaps on to us, as someone here charitably suggests. It's just that in her mind it's all about her, but in my opinion, we are already past that. It is time to worry about the symptom-free in the family, and what is going to happen to them.

I am surprised by the unanimous support of my mother's position. You guys almost make it sound like you never heard of genetic testing and that it was invented solely for my pleasure. People have it done all the time. I don't understand you at all...

[Terry]

Oh, never mind.

[sylvie32]

Thank you Terry, SBL, SL, and others for your non-judgmental support, and of course, as always, Jaynee. And also everyone else who didn't jump down my throat even though they disagree with me.

Bev and Babs - I agree forgiveness is good, better even for the one who forgives. I am working on that. But this is much easier accomplished in physical proximity. As I mentioned earlier, I was going to visit next month, but she panicked, in part because her state of comfort/discomfort is so changeable. She might be in outpatient care again in a few weeks which is completely somewhere else, which is why I haven't booked a flight yet.

I am not going to continue to try and appease ruffled feathers - forums being what they are which is a place where people congregate and in the course of regularity establish a certain pecking order, just like in any school yard. Once you have accidentally kicked mud into the eye of a bully there is no turning things around.

The anger I expressed here concerning my mother is not what I show with her. I have only brought up testing once, even though she made a comment a couple of weeks later clearly challenging me, but I refused to take her bait. There is no point in doing battle over this. The only reason I came here was to get the opinion of others with the disease, and kick around the idea of testing. And frankly, I was surprised how everybody fell in line and responded the same way. I have a visceral distrust of unanimity. It's just not natural, people being what they are. And bingo, after a little while, other people came forward and said that they understood me, and thought I had a point.

It's a shame that a place like this cannot be used to work through difficult issues because some people feel a newcomer needs to demonstrate a willingness to prostrate herself because replies come out of the mouths of real live cancer victims. You know a lot more about this disease, I grant you that, but that doesn't take away from the fact that you are just people with opinions and a different perspective, not candidates for sainthood. Nobody knows everything.

And hannaw - WTF?? Do you ever read your own posts? And you call me "toxic?" Go get your head checked. If there were a way to characterize the members here by sound you would probably fall under the category of "fish monger's wife." Lol.

[eitter]

Kk it was requested to lock this up and I am going to do so, I do not need to say much more then that.

[Molly]

Sorry, Liz. I unlocked in order to respond to this, but I at the dictator who will relock it in a moment.

All, please see final post on o/t topic if you have questions. Thank you for being here.