Wednesday, May 15, 2013

Test or not to test

OK, so some men are crying and many women are going “so what.” As you have read, actress Angelina Jolie had a double mastectomy to prevent breast cancer. She has the BRCA gene that makes it likely that she will get breast or ovarian cancer. Her mother died of breast cancer at an early age. The mastectomy was one step Jolie could take to prevent illness. I don't know, but I imagine since this was planned in advance, the cosmetic result should be good. Her film career is going to go on.

I have read that a Slate a commentator decided not to get the BRCA test despite her doctor urging her to because believe it or not, the BRCA gene is “owned” by Myriad Genetics. The only legal way to get a test for this, the most common mutation that causes cancer, is through Myriad. If you don't have the right risk factors, the test is not covered by insurance and women have to pony up $3,000 or so.

This is a shame (I am thinking worse) and I urge all lawmakers to change this state of affairs.

People just want to know if they carry the gene, not create a cure. Why do people have to suffer with uncertainty if there wallets are not fat? Men, if there is a history of breast cancer in your family, your doctor is going to watch your prostate carefully. There seems to be a link between the cancers. And men do get breast cancer. This is not just a pink-fringed women's issue.

Yes, Myriad should get credit and payment for coming up with the test, but $3000 a shot?

I type this wearing a special bra with a “breast form.” Yes, I have breast cancer. Fortunately, it was caught at an early stage, on my first mammogram. While the markers in the tumor are “HER+” (means recurrence is likely) everything is OK.

Now, my surgeon offered lumpectomy or breast-sparing surgery, but I decided to go with a modified radical mastectomy. The reason? Insurance. The “lighter” options require months of follow-up care with radiation and other treatments. I would be sick at work, take a lot of time off, and that could not happen.

You see, I have been seriously ill before, and have found that employers will look for someone who does not raise their insurance premiums rather than keep a sick employee. I could just imagine losing my at-work coverage in the middle of treatment.

Talk about up the river with no paddle.

Events proved me right, and I now am “cured” my surgeon said, but I have to go back for more frequent testing. Now when I get a mammogram I have to wait in that cold, exposing johnnie until a radiologist reads the “film.” It is always the longest half-hour.

Oh, and I did get BRCA tested. My grandmother and other female relatives died of breast cancer, and male relatives had prostate cancer. My cancer showed up at an “early” age. So the test was covered.

I would have found some way of coming up with the money as I have children, and knowing if the gene is in my line is vital to them. I will do almost anything to protect them.

But why at that time did I have to worry about money and comb through my family tree to “prove” that I was worthy of coverage?

Myriad, lawmakers, we are all looking at you.

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