MOMania

By nurse&mother

September 24, 2008 8:32 AM | Link to this

It sounds like this can be done when the child is a young adult. Why would you needlessly test a child when there is nothing you can do about it (especially at at young age)?

By MomMania#1Fan

September 24, 2008 9:00 AM | Link to this

Yes, I would test my daughter for the gene and inform her at the appropriate age. There is nothing wrong with having information on your genetics which potentially increase the odds.

By Jesse's Girl

September 24, 2008 9:07 AM | Link to this

Wow….this hits so close to home. My childhood bestfriend has battled breast cancer…and won!!…twice. Her mother and her aunt’s have all had it. It took her mother and one of her sisters. Now my bestfriend is pregnant for the first time, with a daughter. She had a double mastectomy and will undergo reconstruction after the birth, so breast feeding is out for her. But she definitely has the faulty gene, as did her mom and the aunt that died. The other sisters have not been tested. My friend is terrified that her daughter will be a carrier as well. The docs have told her that it is nearly statistically impossible for her to NOT have it. So…does she have her tested? Who knows. But its a question she is certainly struggling with. But she was 19 when the cancer first appeared and 30 when it returned. So the question is certainly one that needs to be asked.

By Numbers Guy

September 24, 2008 9:16 AM | Link to this

How do parents and children deal with a family history of breast cancer? It also raises the chances of getting the disease, but you can’t shield yourself from the knowledge in that case. You simply stress screening and exams as you get older. It’s the same deal here.

I only have a boy, but if there was a test for something that raises the likelihood of, say, testicular cancer, yeah, I’d want to know. Both for him and for me. Information is always the most effective weapon in the arsenal.

By Stacey

September 24, 2008 9:23 AM | Link to this

I would not test myself or my child unless it is a situation where the condition could be prevented. Otherwise, I think it would lead to (probably) needless worrying such as in the example posted of the 19 year old wanting a masectomy & not have kids.

My husband’s sister-in-law died from sickle cell anemia at age 33. She was sick and suffering 80% of the five years that I knew her. My BIL told me that when they started dating seriously she insisted that he be tested for the sickle cell gene because if he was a carrier of the gene, she would not have kids with him. BIL is not a carrier and they had a son (now 16). Nephew is a carrier and is he marries a carrier then their kids will have an increased chance of having the disease. If I were in his situation I would probably want my (potential) spouse to be tested and may choose not to have kids if my spouse also has the gene.

By nurse&mother

September 24, 2008 9:34 AM | Link to this

What about insurance? This sounds like the perfect way for those thieves to claim “preexisting condition”. Those crooks will find a way to take your money and then not want to pay for anything. They are the reason that people can’t afford health insurance anymore. But I bet they are making record profit!

Sorry about the rant. This is a very sore subject with me.

Have a great day. I must work today.

By My3Kids

September 24, 2008 9:44 AM | Link to this

Nurse&mother, I have thought about that also before. What sucks is most insurance does not pay for any of these tests (that I am aware of). And they claim to be preventive health… whatever.

I think I would test my girls. I want to be tested. I already know my chances of cervical cancer is extremely high and I have already had 2 scares with that.

If I have the kids tested young, I will tell them when they get older or as soon as it is necessary.

By Band Mom Gone Wild

September 24, 2008 9:50 AM | Link to this

I would definitely encourage my daughter to go for the testing when she’s in her early 20’s. I don’t think now, at 16, she could handle the notion of “possibly” getting the disease. She’d be convinced that she already had it and would probably talk herself into getting it! Her father’s side of the family has an extensive history of a variety of cancers (breast cancer included) and she never met her paternal grandmother because of cancer. She also never met my who mom died of metestatic pancreatic cancer one month before i became pregnant.

Knowledge is power. If you know the statistics are against you, being dilligent about self-exams and mammograms would be all the more imporant in trying to catch it early.

By new mom

September 24, 2008 10:36 AM | Link to this

With a daughter of a one-year old, I don’t think I will have her tested (at least I say this for now). If she was at higher risk for any of those cancers, I would be constantly worried about it, when there is nothing I could do to prevent it. There are plenty of things I worry about that I can actually do something about! ;)

That being said, I had a friend whom I watched pass away from ovarian cancer. It was brutal. Because of that experience, I am very aware of the very obscure symptoms of ovarian cancer!

I agree—knowledge is power. But I think I prefer we educate our daughter on the symptoms and exams for the various diseases, and teach her to be diligent regarding her own health, no matter her own genetic makeup.

By new mom

September 24, 2008 10:49 AM | Link to this

I said ‘with a daughter of a one-year old’….geesh, can you tell I didn’t sleep well last night? :)

By Duh

September 24, 2008 12:09 PM | Link to this

If you KNOW your family tree is loaded with cancer and/or any other devastating diseases, DON’T HAVE KIDS. It’s that simple! Adopt some unloved, neglected child who needs a loving home. But, I guess it’s so important to breed no matter what the circumstances, so that a bunch of strangers who barely acknowledge your existance know you’re a “real man” who can sire a child, or a “real woman” who can carry one

By MA

September 24, 2008 12:22 PM | Link to this

I would not have my daughter tested until her 20’s unless there was history of cancer on both sides of our families. And, there is luckily not. She is 16 and did have the Gardisil vaccine only because my brother-in-law who is a doctor said it was fine and he encourages girls to get them. My son is 20 and had testicular torsion at 6 years old. It was scary but we lived through it. He has to be checked at his yearly physical.

By jct

September 24, 2008 12:58 PM | Link to this

I would not test my child. I would, however, let her make the decision when she is over 18. (That’s if I had a girl.)

This is a subject close to my heart. I have breast cancer in both sides of the family. What I do for myself is I started early mammograms (started at age 30). Yearly physicals. Try to eat wisely and exercise moderately. Beyond that, I won’t get tested. It would not ease my mind. I prefer to live my life instead of dreading what could happen. Not everyone who carries the gene will develop cancer. I could just as easily die tomorrow from a stroke or getting hit by a car walking.

Hey JJ, I hope your arm is feeling better.

Back to lurkersville…

By another new mom

September 24, 2008 1:13 PM | Link to this

My mom tested positive for the breast cancer gene about 5 years ago. She was told, with that fact and our family history, I stand a 95-98% chance of also carrying that gene and developing breast cancer. I made sure to tell my doctor. He and I are both more diligent as a result to make sure I get my mammograms. I started getting mammograms earlier than is suggested because I wanted to make sure that there are healthy scans to compare possible unhealthy scans to. Knowledge is great. But I’m personally not going to tell my own 1year old about the test and the possibilities of her developing breast cancer until she’s 21 and hopefully out of college. Why cause her extra worry when she can’t do anything about it?

By Calhoun

September 24, 2008 1:31 PM | Link to this

Teenaged girls have enough to be concerned with, raging hormones, peer pressure, etc. Why through Cancer into the mix? Let them deal with it when they get older.

By LR

September 24, 2008 2:03 PM | Link to this

I have heard that insurance will not pay for the testing and then they will hold it against you forever if the test comes up positive. I had the usual Genetic testing donw hile pregnant and my child was born with a very, very severe condition that was undetected! You know, you do the best you can everyday to stay healthy and deal with the cards you are given each day.

By Because

September 24, 2008 2:57 PM | Link to this

Why throw cancer into the mix for a teenage girl…I had breast cancer at 19. It is not just something that shows up when you are older.

By Susie

September 24, 2008 6:11 PM | Link to this

My mother died on 6/3 of this year from breast cancer. Her sister was diagnosed with stage 3 breast cancer before she was 30, and their father passed away from prostate cancer. His sister and mother both died from breast cancer. My aunt is now being tested to determine the faulty gene (most likely one of the braca’s) and once that is complete, my cousins (2 male and 1 female) and myself will all be tested. If you have a parent (male or female) with the faulty gene you have a 50% chance of also inheriting that gene. The same mutated braca gene that can later cause breast and ovarian cancer can also cause prostate cancer - as well as be passed from a father to his daughter or sons. If you test negative - then so will your children. Once I am tested I will advise both of my children over 18 (20 year old daughter and a 19 year old son) to be tested. My youngest is only 13 and I was told she cannot be tested until 18. My mother did not need to die - she never went to the doctor or conducted exams until it was too late. Our families testing is 100% covered by our insurance. So will any preventative measures we choose to take such as ovarian removal or mastectomy. You also cannot be turned down for future cancer treatment if you test positive - it is illegal (I checked). I refuse to be a victim or to withold critical medical information from my children that could place them in jeopardy. Like an earlier poster said - knowledge is power.

By DB

September 24, 2008 7:05 PM | Link to this

Susie: It’s not a question of being “turned down” for cancer treatment. The fear is that, given a genetic predisposition, the rates for such insurance will be so damn high that no one can afford them. Sure, if you can afford it and then, God forbid, come down with cancer, they’ll cover you — but you would have probably been able to buy a decent size car that year for the same money.

Insurance companies already weigh risk into their actuarial tables when they ask the current questions on family medical history (mom with cancer, father with heart disease, etc, etc.), and other factors, such as weight, smoking, etc. You don’t think that they aren’t going to factor in a KNOWN genetic predisposition, if they can?

By sad

September 24, 2008 7:46 PM | Link to this

Pediatric cancer is the leading cause of non-accidental death in children. It is a nightmare! We lost my 5-year-old nephew to neuroblastoma in 2003. You cannot begin to imagine how horrific that was. For me, it was eye opening to see an entire floor of oncology patients at the Children’s Hospital.

By fk

September 24, 2008 8:10 PM | Link to this

sad…my niece was diagnosed with a very rare brain tumor days after her ninth b’day. She fought a brave battle for 5-1/2 years, but passed away a year ago at 14-1/2. It was heartbreaking to see her suffer and deteriorate, and to see children and infants with cancer at the hospital. Very little is known or researched regarding brain cancers in general.

I hope your family is healing. My sil is really trying, but she is just so sad. Not a phone call goes by when she does not breakdown. She misses her daughter and sees her daughter’s friends progessing and enjoying life. My niece would have started high school this fall. Most days my sil does okay, but there are times when she just goes hour by hour.

By Mark

September 25, 2008 7:25 AM | Link to this

Before getting tested for ANY condition you need to know the ramifications of what those test results could be. A positive test result could put you in a position to be unable to get health insurance, life insurance, long term care insurance, disability insurance, etc. for the rest of your life outside of a major group plan offered by an employer. Our health care and insurance system needs to be redone to address these issues.

By nurse&mother

September 25, 2008 8:20 AM | Link to this

DB that is exactly what I was referring to in my post yesterday, but I was short on time and didn’t have time to elaborate on it. You are right on the money!!

Mark- I whole heartedly agree with your last sentence in particular.

By Susie

September 25, 2008 11:52 AM | Link to this

I went through the Northside Regional Cancer Center for my testing. I shared all of those concerns and questions and was assured that you and ONLY you are the one that receives the test results. They cannot even release those results to your doctor without your permission. Knowing you have an increased risk of developing breast cancer (up to 85%) or ovarian (up to 65%) means that you are then a candidate for enhanced screening procedures such as ultrasound breast scans, more frequent mamograms as well as other options. It is illegal to increase your life or medical insurance premiums based on the results of this particular test - and more importantly - illegal for that information to be released to ANYONE without your written consent. Genetic pre-disposition towards a condition or disease is not the equivalent of a pre-existing condition. It just keeps you better informed and increases your choices for preventative treatment.

By nurse&mother

September 25, 2008 12:49 PM | Link to this

Susie-I suppose I am a little jaded, but I changed insurance companies last year and went back to one we had used previously. I had so many elimination riders on myself it wasn’t even funny. I had had some stress, along with bleeding for 25 straight days. I told my doctor that I had been working more hours (temporarily) and that I felt like my hormones were out of whack and also had a little mild stress. (who wouldn’t be stressed and grouchy if you had a period for a month!!).

Those stinking crooks (insurance companies) placed an elimination rider for four things! I was a little p**. It is just a way to put more money in their pockets! There are no if’s and’s or but’s about it. If the insurance company can weasel their way out of paying for something (and increase your premium while they are at it) they will.

I understand what you are saying about the confidentiality, but insurance companies are pretty savy. If it ever comes to their attention, I assure you they will find a way to cheat you out of money or healthcare (or both). They will find a way to compensate for the potential situation by increasing your premiums. Then there is nothing you can do, but try to find another policy.

If you or your spouse works for a big company, the situation may be different. But for those with private insurance, we are at their mercy.

Sorry for the rant.

By DB

September 29, 2008 12:32 PM | Link to this

One last thought on this topic: Susie, I’m with nurse&mother on this, and will join her on her rant. Insurance companies are in the business of NOT paying a claim, and they will use ANYTHING possible to avoid paying out.

When you sign up for an insurance policy, you usually answer a LONG series of questions yes or no, if you have history of this or that, etc., etc. It’s just a matter of time (and not much time, at that), before some of the questions are: “Have you ever been screened for a genetic predisposition for the following?”, etc., etc. You can lie, sure, but if they catch you (usually while you’re in chemo for breast cancer), then they will disallow the entire claim because you lied on your application — or your premiums go from $450 a month to over $5,000 a month.

It’s true, medical privacy will prevent them from disclosing the test results. But that only puts the onus on you, and don’t think an insurance company isn’t going to jump all over that. There is no such thing as “privacy” in this day and age.