Well, it has been a year and the annual Pap smear was my new thing for this week. While this is never an experience I would like to share, I certainly had an awakening moment. I have a history of breast cancer in my family that places me in a high risk probability of causation. My physician asked me if I would be interested in genetic testing for the breast cancer gene.
When I got home from the doctor’s office, I did some research on the genetic testing and it appears that there is a high risk of hereditary breast cancer if you have BRCA1 or BRCA2 gene. The test is just a simple blood test that is sent to a laboratory to test if there are mutations to the BRCA1 or BRCA 2 genes.
Seems appealing, right? There are two problems that I am having with the idea of genetic testing. First of all, the insurance companies would love to obtain this information in order to release their liability for future services. Second, I am not sure I want to be informed of my possibilities. It is purely out of fear.
The National Cancer Institute does provide some great information on the pros and cons of genetic testing as well as options for positive testing. The website can be found here http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA
The biggest downfall to this testing is that the cost of the test is approximately $500 and the insurance companies rarely cover the cost. I know of one person that had this procedure done but rarely speaks of it, she is a quiet person. Does anyone have any advice? Do you have a story that relates to any genetic testing?
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Loca, so glad you asked this question. It's certainly one that requires a great deal of thought.
I think that I, also, would want to know. Of course you never know for sure unless you are actually in the position and needing to make the decision. But I think I would want to know.
If I tested positive, I'm not sure that I would do anything different than your extra vigilance, Susan, but I think that my decision-making process would then take on a different pathway. Instead of wondering how I'd feel, I would know how I'd feel and could proceed from there. I might decide that a double mastectomy with reconstruction would be something that was right for me. While having the gene doesn't necessarily mean you'd get the cancer, being pro-active about the possibiity is something that might appeal to me in that situation.
I think I'd feel differently if it was gene testing on something for which there was no cure, at least not yet. In that case, if there was nothing to do but have the knowledge, I don't believe I'd want the knowledge.
Good food for thought, Loca. Thank you.
January 27, 2009 - 10:36amThis Comment
Thank you, Michelle and Coach Virginia, for your advice. I certainly will take into consideration all the advice. There is much concern over the insurance issue as well as making harsh choices. I will certainly let you all know what I end up doing in the process. I have a scheduled appointment to talk with a counselor.
January 26, 2009 - 10:32amThis Comment
Great question and postings! According to genomic medicine, the enzyme genetic polymorphism for breat cancer (BRCA1 and BRCA2) can be identified through testing, but it does not mean a woman will develop breat cancer. There are metabolic expressions of genes that can be influenced by lifestyle changes and nutrional and supplemental choices.
With that said, the labs who run genetic testing should abide by the same patient privacy laws (HIPAA for example)and I doubt the results are shared with insurance companies if done in privacy. I do not even know if insurance plans cover for this type of testing, so why should they claim "ownership" over the information provided by the results?
Physicians can also refuse to share medical information with payors to protect patient privacy at the request of a patient. But, here is the big BUT...from an ethical perspective, the insurance industry can argue that genetic information is theirs when they pay for the test. I anticipate a slippery slope potential....patient privacy advocacy groups need to start addressing this potential conflict sooner than later.
There is a great new book that I just finished reading written by Pamela McDonald: "The APO E Gene Diet" Pamela's website is: http://www.apoegenediet.com/testing-options2.htm
You can find more information on her site to help you decide whether to get genetic testing or not. She also suggests reading her book first and then deciding. The above link offers options including getting tested anonymously to protect your privacy from the insurance threat.
January 24, 2009 - 11:54pmThis Comment
Ok...So here's my take on genetic testing. I would want to know. I have a lot of women who have opted to have the testing done and whether they received good negative or a positive, they were glad they found out. I think it's the fear of the unknown that can be worse.
I, personally, would rather know so I can do what I can to negate it and or be proactive in my approach. Another words, I would want to know everything I could on what I may be predisposed to. I'd want to be alerted by google alerts on new treatments, procedures, clinical trials and news on my particular predisposed condition.
I would do the same with a site like EmpowHer. I'd learn everything I could from other women who've had the genetic testing and tested positive. I'd want to start a dialogue with them as well. I'd want EmpowHer to find doctors for me to talk to or have access to via video. The amazing doctors who are the "BEST" at treating, diagnosing and or researching whatever my predisposed condition might be.
The insurance companies now have to cover at least part of the testing. There was a law was passed about a year ago forcing insurance companies to step up when it comes to paying for genetic testing. Doesn't mean that they can't raise your insurance. But they cannot cancel your policy because you've tested positively with the gene.
We do have some information on the site about this very topic in our Ask and Share section. If you type in "genetic testing" it's right below the browse health topics. Located on the upper right hand corner of the screen..its a search bar. I'm sure you'll find some great information of women sharing their stories and how they feel about genetic testing.
I'd love to hear your thoughts...It's never an easy decision. I'm one that always wants to know as much as I can. Doesn't mean it's the right approach but its what's right for me.
Best in health,
January 24, 2009 - 10:29pmMichelle
This Comment
Thank you for input, Susan. I really feel the same way. I am not sure I am ready for an amputation for a positive result. There are miracles, right? I guess there is the thought that we shouldn't really know what the future holds. This is another reason why I do not participate in psychic readings. If something is going to happen, I will let nature takes its course.
I don't want to deter people from their options, but I certainly want to be prepared for my chances and I will be diligent with my checkups and personal checkups.
January 24, 2009 - 2:50pmThis Comment