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DisneyBride828

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Hey all..I know most things on here are about being happy newlyweds, but I was wondering if any of you ladies have experienced breast cancer in your immediate families. Have any of you considered the BRCA Gene Screening test? And if you did it, what did you "do" with the results? DH and I are currently debating whether or not I should be tested, as mom has had BC twice, first time at 30 years of age. I wasn''t sure if I wanted to know that information. If you are not willing to share, I completely understand! But, even if you can offer some info on the topic, it would be greatly appreciated! Sorry for such a heavy topic on a Saturday.

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Christina Marie
 
I never heard of this so I will look into it (thanks for making me aware), but if it runs in the family I would say better to know as much as you can sooner than later.
 
My mom has had it twice as well as ovarian cancer where she had a hysterectomy, a tumor removed from her bowels, 6 feet of intestines removed, and chemotherapy of course. I believe they did a test where they could determine the odds of me and my sisters getting it as well and it ended up being that the odds were good that 1/3 of us would have it. At that point my dad's company changed their health plan which didn't support my mom's cancer treatments so we didn't get to do the second test which would determine if we had the gene but we are hoping to have it done sooner rather than later.

On another note, I am hoping to have boys for children more than girls for this exact reason. I don't want to pass the gene on.
 
Please, get tested for the BRCA gene. It could save your life.
 
My mother is a breast cancer survivor. Her onset was at menopause and they think related to the hormone replacement therapy she was on. The chances of it being genetic are slim, so I will not have the test. However, if I was in a high risk group I would want to know my chances so I could plan or take proactive action. As you know, BC is highly curable when it''s caught early. Knowledge is your best defense.
 
Hudson- very true, knowledge is power! They think that I''m high risk genetically, BUT we already do general "preventative" (i don''t know if u can call it prevention) steps. Obviously the standard: eat well, no smoking, excercise...and then of course, the not so fun, getting mammograms, MRI''s and breast scans yearly. That''s why I''m not sure what it would change, other than knowing if I carry the gene.
 
I''m with HH--knowledge is your best defense.

I would get tested if I were in your situation.

As for personal experience, there''s no BC in my family. However, my aunt by marriage lost her mother to BC when my aunt was only 12, and she had the BRCA gene screening test done. She carries the gene, but originally chose not to have any preventive surgery. However, she did go on a frequent screening schedule for BC. She was then diagnosed with BC about a year after she had the screening done, and it was caught very early. She had a hysterectomy and a double mastectomy, and has been in remission for about a year now. She believes that the increased screening she began to have after the BRCA gene screening saved her life.

I know a girl from college who had the gene screening, found she was a carrier, and then had all the preventive surgery soon after. She was 26 at the time.

Again, knowledge is power. Why wouldn''t you have the screening done?
 
A friend of mine had the test and found out she was positive. She had double mastectomy with reconstruction and total hysterectomy. She has no regrets. She is alive now 10 years later with little risk. She has 3 daughters who now have to make the decision what to do.
 
Date: 1/30/2010 4:43:25 PM
Author: DisneyBride828
Hudson- very true, knowledge is power! They think that I''m high risk genetically, BUT we already do general ''preventative'' (i don''t know if u can call it prevention) steps. Obviously the standard: eat well, no smoking, excercise...and then of course, the not so fun, getting mammograms, MRI''s and breast scans yearly. That''s why I''m not sure what it would change, other than knowing if I carry the gene.


My SIL didn''t know she carried the gene until she found a lump. She had a dbl mastectomy, complete hysterectomy, chemo and radiation, but it was too late. Her cancer has now spread everywhere, and she is dying. She is only 42, with three little kids. Maybe if she had known earlier her outcome would be different. As HH said, knowledge is power.
 
BC doesn''t run in my family and I had never considered getting tested.

I might get tested now, just to make sure I am not an anomaly or anything, and I want to believe that I would put my health first.

I already don''t plan on having any children, but I am still afraid of having to have a hysterectomy or a mastectomy. I already hate any type of "alteration" to my body (not that it''s fantastic), I very rarely take medication and I''ve never had any types of major surgery. I don''t take antibiotics unless absolutely necessary and I don''t even take birth control pills because I don''t like the mood swings I get with them.

Although I don''t believe I would have a problem with reconstructive implants, I think I would have a hard time with hormone replacement therapy.

If I was at high risk, I would run and get tested and I would definitely consider surgery. Even if my husband and I joke that my life expectancy decreases with each step I take due to my clumsiness, I would want to have as much time as possible to enjoy him and our marriage.

PS- I am so sorry for all of you who have had to deal with the cancer battle IRL. My heart goes out to each of you.
 
All of the women on my mom''s side of the family has either had uterine cancer or colon cancer and my mom recently had a complete hysterectomy due to problems that she was having. I brought it up at my last gyno appt and the nurse recommended I be tested for the BRCA gene. I don''t really know what to do. I am going to be 28 this year and already have a son and since I have a blood clottig disorder a future pregnancy would be high risk, however, I fear that if I test positive that the insurance companies will find out (health and life) and then they''ll use it as a "pre-existing condition" and esentially not cover anything for me and/or refuse to cover me at all. I''m still thinking about it. I''ve personally never experienced any ''womanly'' problems but my sister has.
 
thank you for all your input. I am seriously on the fence about what to do, even after hearing both sides. Sometimes I''d like to know, and other times I wouldn''t, but once you have that information there''s no going back.

DivaDiamonds- that is a very interesting point you made about "pre existing condition" and health insurance. That thought hadn''t even crossed my mind. And who knows with insurance these days?
 
Date: 1/30/2010 9:41:00 PM
Author: DivaDiamond007
All of the women on my mom''s side of the family has either had uterine cancer or colon cancer and my mom recently had a complete hysterectomy due to problems that she was having. I brought it up at my last gyno appt and the nurse recommended I be tested for the BRCA gene. I don''t really know what to do. I am going to be 28 this year and already have a son and since I have a blood clottig disorder a future pregnancy would be high risk, however, I fear that if I test positive that the insurance companies will find out (health and life) and then they''ll use it as a ''pre-existing condition'' and esentially not cover anything for me and/or refuse to cover me at all. I''m still thinking about it. I''ve personally never experienced any ''womanly'' problems but my sister has.

DivaDiamond007 - Please get tested, especially given your family history. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) specifically prohibits plans from excluding treatment for genetic information:

"Genetic information. For example, if a woman is found to have a gene indicating she is at a higher risk for breast cancer, she cannot be denied coverage if there is no diagnosis of the disease."

The above quote and more information on HIPAA law can be found here: http://www.dol.gov/ebsa/faqs/faq_consumer_hipaa.html
 
This is something my fiance and I are discussing. His mother is a BC survivor and she lost both her mother and sister to breast cancer. She has been tested and has the gene. My FI has been getting screened for breast cancer every two years for the last 8. He won''t get the test. He is very afraid that if he is positive it will affect his insurance coverage even if not now, but in the future should he have to disclose it. Breast cancer doesn''t run in my family and, this could be selfish, so we will be taking that risk in having children. It is still 50/50 that he even is a carrier. I am not 100% sure how I feel about it, but I do know that if he is tested and positive, we will not have children, so we are doing what we feel works for us. I have been hoping we only have boys though, but if we have a girl I would encourage her to be proactive with her health in general, as I would even if the gene doesn''t run in our family. Sorry I am not making too much sense, I am just very conflicted about it myself.
 
DB28- What you describe with your mother does put you at higher risk for a genetic form of breast cancer.

Many women who test positive for BRCA have prophylactic mastectomies in order to reduce their risk. Unfortunately, this is not 100% preventative.
Other women opt for surveillance through clinical breast exams and more frequent mammograms. Though more frequent radiation exposure does complicate the matter.
And then there are the women who opt to do nothing more than their annual mammogram.

Personally, I would get tested. Here''s why: It would give me more options than a fatal cancer diagnosis otherwise would (if it''s positive). It would give me enough information to make informed decisions about my health. Also, if you were to have children keep in mind that any potential daughters would be highly susceptible to carrying the gene as well. With medical technology advances that information could be invaluable to a daughter who carries your genes.
And, if you are considering children having the information about your BRCA status will give you the opportunity make decisions about carrying and breast-feeding a child.

I know it''s scary but as G.I. Joe says "knowing is half the battle"
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Hey there - I can''t weight in on the whole idea that this could compromise any future coverage for health insurance as my state does not allow insurance companies to deny coverage for pre-existing conditions. HOWEVER, there is usually very specific criteria which must be met in order for BRAC testing to be covered under most insurance plans.

If you decided to move forward with the testing make sure you check with your insurance company prior to having the testing done. It may not be covered if you do not meet all of the required criteria. The testing is expensive. Example: for my health insurance to cover this testing the risk must be greater than ten percent for a positive test result based upon either Myriad or BRCAPRO model; the results must significantly alter the medical management of the patient and the recommendation must be based on risk factors, clinical presentation and family history all supported by consultation with a licensed genetic counselor or a physician with expertise in genetic counseling. So, you see, although you have a first degree relative it may not be significant enough to compell coverage of the testing.

Not trying to discourage you from seeking this test - just trying to save you from the burden of the expense if your insurance company denied coverage of the test. If you do meet criteria for testing, I''d think seriously about having it done or at the very least I''d have an open and honest conversation with your provider about what s/he recommends.

Good luck!
 
Keeping the Faith has some great points.

If your mom has breast cancer, why not just assume that you have a genetic component to your situation and get screened more frequently? Your PCP can easily refer you for earlier and more frequent mammograms, and we all do self exams every month as well.

My husband is a cancer researcher and he explained it to me that women carrying one of the three BRCA alterations have on average a 56 percent chance of getting breast cancer by the age of 70 (compared with a 13 percent chance without the alterations) and a 16 percent chance of getting ovarian cancer by age 70 (compared with a 1.6 percent chance for non-carriers).

In other words, the researchers estimate that by the age of 70, slightly more than half of all women with an alteration will develop breast cancer and about one out of every six carriers will develop ovarian cancer.

So ultimately, being a carrier means that your odds are 3xs greater than the avg population. To me, that really isn''t very high if you consider that smoking ensures that your odds for getting cancer are 9xs higher than the avg population (if you even live to be 70) and that if you are obese your risk goes up 6xs more than healthy folks and that stat is for 50yrs, not even 70. Being a carrier isn''t a death sentence, just under half the carriers won''t ever get breast or ovarian cancer.

I volunteered for an ovarian cancer study since I have had it, and my paternal g-ma had it, but discovered that I am not a carrier. Personally, I only got the test because it was part of the study, and would not pre-emptively cut off any part of my body on the chance that something could go wrong in the future. To me it is better to live a healthy lifestyle and take preventive care of yourself, genes are not the only thing at play here. People can smoke, be obese, eat poorly, not exercise, and then say, "the genetics got me!" I don''t think so, it is impossible to know if environment or genetics triggered the disease. Govts spend billions on researching genetic components of cancer, but we can''t find the money to fund after school sports or really high quality PE courses k-12. Yes, I probably got my ovarian cancer through some sort of genetic condition, but I also was young next to one of the first nuclear waste dumps in the US...

Regarding testing, it is very easy for insurance companies to deny coverage based on pre-existing conditions and tests are wildly expensive. (but we don''t need insurance reform?) Anyway, volunteering for studies is always a nice way to help others and learn more about yourself. It isn''t possible everywhere to do this, but if you can, it is rewarding.

Even if you are not a carrier, stay with a healthy BMI, exercise 5xs a week, never smoke, eat a healthy diet that includes fish oil, avoid asbestos, stay off the cell phone, these are all ways to prevent cancer.
 
When men carry the BRCA gene, it increases their risk for several types of cancer. Having a son does not mean you will be saving your child from a genetically increased risk for cancer. The American Cancer Society has a good page of info about men and the BRCA gene''s impact on them here.

An excerpt:
"The average man''s chance of being diagnosed with prostate cancer during his lifetime is 1 in 6. But men with the BRCA2 mutation can have a risk as high as 1 in 3, and many of these cancers will develop in men under age 65, which is considered young for prostate cancer."
 
We have breast cancer in my family as well along with a whole host of other problems. My grandmother survived breast cancer and had a breast removed and then reconstructed so I defenitely feel some concern about it as far as I am concerned. As soon as I am able I would like to be tested. I think it would be a good idea for any woman, just in case.

Does anybody know the cost of this test?

Oh and sorry for sneaking into the newly wed section I just thought this was an important thread
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