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Genetic testing anyone????

KierstenRx's picture
KierstenRx
Posts: 249
Joined: Nov 2006

My oncologist is suggesting genetic testing due to my age (32). I met with a genetic counselor and he also agrees. Colon and reproductive cancers seem to be hitting the females on my father's side. Those of you who had the testing, was it worth it???? Do you feel better knowing the results??? I am unable to have children so there is no risk of possibly passing a faulty gene on. Did your insurance pay for it??? I don't want to go through with it if insurance won't pay. We have enough bills..... Thanks for any input.

suzannchili's picture
suzannchili
Posts: 135
Joined: Mar 2003

My oncologist sent off blood samples three times before my insurance company would pay for the testing. He is very persistant and three times was a charm. I tested positive for a gene mutation- which I fully expected as I was 29 at diagnosis and my mother survived endometrial cancer 4 years after my diagnosis. Was it worth it? It freaked me out at first to be told I had a genetic mutation (I thought I was perfect), but found it good information to mange a long term survivor's care. I have been on the three year plan for colonoscopys and will now go once a year. And it has been recommended I have my uterus removed when I am finished having my children- as there is a chance of uterine cancer. It can change your follow-up care regimen somewhat- but I wouldn't say it was all that necessary. I've been getting checked frequebtly anyway. Hope this helps a little.
Suzann

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Hi Kiersten -

Sorry you have to be here. I don't know much about genetic testing - my Stage IV colon cancer is definitely not genetic. However, given that you say you cannot have children, I am not sure why you would go through genetic testing. It might be interesting to find out what's up, but I don't see how it would help you and since it won't help you decide about having children or when to test children, it kind of seems like a lot to go through for little benefit.

Anyway, welcome. And, as I said, my situation is not genetic, so I can't offer the best advice.

Take care,
Betsy

lynn1222
Posts: 105
Joined: Nov 2006

i didnt have any genetic testing, however due to my age my siblings were tested and will have to be tested more frequently then the norm.

Monicaemilia's picture
Monicaemilia
Posts: 455
Joined: Nov 2006

Hi Kiersten: I have been tested (don't know the results yet) but my impetus was my 1 year old son. The geneticist told me that by testing me, if they found the gene, they could also determine by a simple blood test whether my son or siblings are at risk. In your case, I'm not sure that it matters, but as Suzann said, it may help manage your health care. If you don't have to pay for it, I don't think it can hurt. Monica

JADot's picture
JADot
Posts: 720
Joined: Jan 2006

Hi Kieersten:

Genetics test is well worth it, because knowing a problem is a critical first step to solving it. I had all the symptoms of HNPCC, so I was tested. My insurance company paid for it w/o any arguments. Sounds like some HNPCC-type mutation exists on your father side's family, given the history. So I would say go get tested.

Best of luck to you!

Cheers,
Ying

spongebob's picture
spongebob
Posts: 2599
Joined: Apr 2003

Hi, Kiersten -

I agree with you and your onc that you may have a genetic mutation based on your age and family history of colon and reproductive cancers.

I know a number of my cohorts here agree with your onc and genetic counselor regarding testing. Although I usually am well aligned with my fellow SemiColons, genetic testing is one issue where we don't always agree.

I have HNPCC. I did genetic testing through the National Institutes of Health/National Cancer Institute. When I came up positive for HNPCC, they tested my mom. When she came up positive, they tested all of her siblings and my sister. When some of her siblings came up positive, they tested their adult children. LOTS of (need I say expensive? Thank you, taxpayers) genetic testing going on.

Here's what I saw as medical benefit of the testing: nothing. Knowing you have the gene won't keep you from getting cancer. Knowing you have the gene may make you keep a more robust surveillance regime (I think it goes without saying that someone with a strong family history should be doing that anyway, right?)

Here's what I saw on a personal level:

1. A mother who blamed herself for "giving me cancer" and the personal grief that came with that.

2. A sister who felt great guilt at not having the gene.

3. A cousin who has the gene but is not symptomatic who wanted to go out immediately and have a complete hystorectomy (thank heaven we talked her off that ledge - she has had two beautiful kids since then).

4. An uncle who is positive for the gene, but refuses to buy-into it. He's over 50, smokes like a chimney and refuses to get scoped.

What did we gain medically? Nothing. What happened on a personal level - lots.

As far as your insurance company goes, I say keep them as far away from any genetic testing you do as possible. Here's my concern with allowing an insurance company to do anything with genetic testing, in a phrase: "pre-existing condition". I realize that the Health Insurance Patient Privacy Act (HIPPA) keeps your health information private, but will you be afforded that protection in 10 years? Will your insurance company pull the plug on paying for your treatments if you have a genetic (read as pre-existing) condition? Let's be honest; insurance companies are in business to make money, not to pay-out money. Could having a positive genetic test be a foot in the door for them? As one who has seen the legislative process up close and personal for 6 years in Washington, DC, I see it as a distinct possibility. Maybe I'm just cynical - but that cynicism has to come from somewhere.

Again, I fully respect my collegues' position, but I have had the testing and seen the results first-hand on a fairly large scale within my family. In addition, I have had a few years to really think about it and develop my position. For these reasons, genetic testing just doesn't make sense to me.

No doubt, you will decide what works best for you and whatever you decide will be the right thing. I just want to toss out some additional info for you to consider. My one strong recommendation is that you talk to your siblings and cousins on your dad's side of the family and advise them of the symptoms and recommended surveillance regime for genetic colon cancer.

Hope this long-winded response was helpful.

Be well

- SpongeBob

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

I had genetic teating done because I wanted to know for my 3 kids, Luckily it was negative, although they will still be screened for colon cancer. I just didnt want them to go through what I have been through.

My testing was negative. I was told if my genetic testing was positive, they would have had a 80 per cent chance of getting colon cancer.

Maureen

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

I have been struggling with the same question as well. Since I haven't come to a decision about how I will feel after the testing (if it were to come out positive) I will not have it done. It has already cost me an already shaky relationship with my half-sister... so be it.

I was diagnosed the day after I turned 27 from a juvenile polyp that I probably developed when I was 17 and turned cancerous at 21.

My first oncologist was never very enthusiastic in me getting genetics testing. He mainly said that my siblings and parents should be screened, mainly my siblings. Also, my daughter should have her first scope at 15 or 16 and screened regularly after that. His opinion for my cancer was diet and the lifestyle most tend to live (sedentary, eating too much of the wrong stuff, etc.). I can pinpoint many things that could have contributed to my cancer. Also, virtually nobody in my family has even had cancer, and NOBODY has had colon cancer.

SB spoke my first fear. Insurance is not out for our best interests. They are out for their bottom dollar. They hire people for the sole purpose as to finding a single reason they can deny any claim. My insurance is good, and I had to fight to get two PET scans paid for after they said no authorization was needed. I really don't want to fight them over this; now or in the future.

I am also afraid that I would feel tremendous guilt if I have the gene and passed it on to my daughter. As she get's older, I will likely do the testing for her though.

I am also worried that a negative gene could cause others to not get screened because they think they are free from colon cancer (i.e. my sister). Her reason for wanting me to get genetics testing is so that SHE won't have to pay for colonoscopies. She has many risk factors from her mother's side for various cancers. Yet, it seems as though my cancer is the only one that has inconvenienced her. If mine is negative, I'm certain that she would stop getting screened because she (or her husband) doesn't want to pay for the tests.

But I am "selfish" and "inconsiderate of others."

I know that if the test came out negative, I would breath a sigh of relief. If it came out positive, I don't know what I would do. I am from one camp to the other on this issue.

Let me know what you decide, if you don't mind.

Good luck with the decision.

Tricia

JADot's picture
JADot
Posts: 720
Joined: Jan 2006

I should also add that while genetic testing won't cure your colon cancer, knowing whether or not you're HNPCC positive, for a woman, has BIG implications on further treatments and screening precautions. At about this time last year, there was an article in the New England Journal of Medicine on the correlation between HNPCC and the increased risk for ovarian (12% life time) and uterine (60%!) cancer. As a result, I have CA125 in addition to CEA for all of my blood tests, and I am also authorized to be PET scanned much more frequently. My gyn even suggested preemptive surgery - which I said no to, for now. I'm also watched by a gyn-oncologist. So, I am obviously on the sides of if there is any bad news, then I want to know it, and know it early. That was really why I got the genetic testing. BTW, I have no siblings and nobody in my family has ever had this. So, I am the living proof that mutation happens. If you are interested in the article, let me know. I'll be happy to dig it up for you.

Good luck to you!
Ying

staceyp's picture
staceyp
Posts: 26
Joined: Jan 2006

Hi,

My husband's doctor has been on us to get genetic couseling as well. He was 35 when first diagnosed. We haven't done it and don't plan on doing it. My concern is that if my children test positive for the gene, the insurance companies could say it's a pre-existing condition. They may decide to drop them at a later time. What about life insurance when they become adults? If they are predisposed to developing colon cancer, they might not be able to get insurance. I know it's a lot of "what if's", but I've learned that you can't take anything for granted. I just assume that they have the gene. They will be screened for colon cancer as soon as they reach the age of 25 and every year after. I may be paranoid, but you never know. Right?

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