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My name is Sybil Goldrich, and I blog at the Beauty and the Breast blog. I have been one of the leading consumer advocates involved in the fight f...
 
 
 
 

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I Did It! Genetic Testing for Breast Cancer

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The papers sat on my desk for a year. Every so often I’d come across them when I moved other piles of papers around. My daughters had asked me to get genetic testing for breast cancer and although I have told anyone who would listen that I would do anything for them, this task was frightening and I procrastinated.

The question that needed to be answered was: Do I have mutations in either of two breast cancer susceptibility genes—BRCA1 and BRCA2? If I had those genes, my risk of breast or ovarian cancer are significantly higher than that of a woman without such a mutation. Only 5 percent to 10 percent of breast cancers are caused by such a genetic change. The answers to the question could affect my daughters and granddaughter.
I began to answer the questions about my family’s medical history—not just my family now, but ancestors as far back as I could trace. I plumbed my memory for the many family stories my mother had told me because she was no longer around to fill in the empty spaces on the page.

After I had written what I could, I called my mother’s sister, the only one alive from that generation. At 92 she is feisty, funny and has a wonderful memory. I hope I inherited the gene for that! She answered a few questions and the pages were then as complete as they would ever be. There was so much I didn’t know but the testing would tell me enough to identify whether or not I carried BRCA1 and BRCA2.

Why did my daughters ask me to go for genetic testing? They had questions that related to their own health future. My medical history concerned them and the effect it might have on their own health futures.

I had already had two primary cancers: breast and kidney. I had also had a hysterectomy at age 48 so there was no chance for me to get ovarian cancer. But there is a list of reasons why a woman would want to be tested and I fit the description of several items on the list:

I had bi-lateral mastectomies at the age of 43.
My maternal aunt had breast cancer in her 70s.
I am of Ashkenazi (Easter European) Jewish ancestry.

I made an appointment with the genetic counseling team at our local teaching hospital. My counselor asked me many questions about my history. My maternal grandfather died of what was described as stomach cancer at the age of 43. My maternal grandmother died of what was described as pancreatic cancer at the age on 70 (or so, because nobody knew her real age!). My mother died of lung cancer. Not a pretty picture, it seemed. But none of that had anything to do with BRCA1 and BRCA2.

By the way, I was interested to learn that there are laws against discriminating against anybody who has been identified with having this gene. Insurance companies are not permitted to remove you from their rosters if you have the gene. Somehow hearing that was comforting but I’m not totally convinced.

A blood sample was taken. That was it! That was all! It was a lot simpler than I had imagined.

It will take a month for the evaluation to be done. In the meantime, I have provided the genetic counselor with pathology reports of my breast cancer and of the kidney cancer.

I’ll know the answer at the end of September. I will give the results to my daughters so that they can consider what they need to do. Of course I hope I don’t have the gene. But if I do, knowing about it is so important for the generations that will follow me—and I hope there will be many.

By the way, the best way to get information about this is to type “genetic testing for breast cancer” into Google. The information is vast.

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Sybil Goldrich 5 pts

High risk centers for breast health are very important to those of us who need that extra evaluation because of our genetic or personal histories. I'm glad that the price of the testing at the Huntsman Center is so reasonable.

It shows us another important thing and that is that it is possible to get the test done in many places and that should keep costs down and excellence of follow-up higher. Believe it or not, these Centers are competetive for good health results at reasonable cost and we can be the beneficiaries of that. So our personal research is key.

I'm glad you followed through with the testing and that now you can better consider the health path in front of you. Some things are hard to aknowledge but doing so will give all of us the best shot at healthy, long life.

acancerfreeutah 5 pts

Thanks for writing this post.

In my early 20s (I'm now in my late 20s) I was strongly urged to get tested BRCA 1 and BRACA 2 gene mutuations, particularly because my mother died of metastic breast cancer at age 39.

Unfortunately, I do have both gene mutuations for breast cancer which means that I have at least a 60% of having breast cancer in my lifetime. Yet, at least now I know what further preventative measures I can take in addition to monthly self-breast exams, annual mammograms, etc.

I do know that the high-risk breast cancer unit at Huntsman Cancer Institute charges $200.00 for an evaluation appointment. So, if you're in and around the Utah area, you may want to check that out...

Glad to hear that you ladies are being so proactive about breast cancer prevention!

Danielle White
info@cancercrusaders.org
http://onlyskindeepbook.blogspot.com

Sybil Goldrich 5 pts

There are some insurance programs that cover genetic testing.

I got a prescription from my internist that said "Genetic Testing" in the space where he would have put the name of a medicine.

When I called the genetic counselor she asked me to fax the prescription to her. I did that.

I am covered by Medicare and have purchased a supplememental policy to cover anything that Medicare doesn't cover. Because of the prescription and because of my history, Medicare will cover me.

The cost for this procedure without insurance can be as high as $4000.

As you would probably do with any other medical procedure, I'd check with the insurance company and not take no for an answer if you fit the description of someone who should get tested.

Catherine Morgan 5 pts

I'm curious...Is this type of testing covered by insurance?

Contributing Editor Catherine Morgan
also at Women 4 Hope ( http://women4hope.wordpress.com/ ) and Informed Voters ( http://informedvoters.wordpress.com/ )

Sybil Goldrich 5 pts

It's funny about procrastination -- now that I've had the test I was concerned because I couldn't get an early appointment for the results because of everyone's vacation schedule (funny thing about August!). Now my wait isn't procrastination, it's frustration! But very bearable because no matter the result my family and I will have knowledge and power we didn't have before. I'm so grateful to the people who identified the gene! Good thing they didn't procrastinate!!!

abswyg 5 pts

I'm so glad your daughters asked you to do this and I'm so glad you did it. If it turns out that that you do have the BRCA genes, it'll allow you all to be so much more empowered and proactive with your health. There are lots of options today for protecting against breast cancer. Knowledge really is power!!!

Amy S.
Up With Moms (http://upwithmoms.blogspot.com/)

Denise 41 pts moderator

Thanks for writing this post. I can understand your procrastination about this, completely understand.

~Denise
Fast Times @ Homeschool High ( http://fasttimes.clubmom.com ) & Flamingo House Happenings ( http://www.flamingohouse.net )