Last year I was referred to a
Genetics Counselor when my then new Primary Care Physician learned of my family's cancer history. As you may know, my Mother passed away at age 49 after a 1 year battle with Ovarian Cancer. Her sister, my Aunt, has since become a victim of Breast Cancer. Their Grandmother, my Great-Grandmother, also died at the age of 49 from "female cancer" which we can only guess may or may not have been Ovarian Cancer. Having had several ruptured ovarian cysts and abnormal pap smears myself my PCP thought it best to speak with someone about my risks.
So last May I traveled to Oklahoma City to speak with Dr. Hollingsworth about my Cancer risk. He explained to me what exactly the BRCA1 and BRCA2 genes are. We discussed my increased risk of breast and/or ovarian cancer because of my family history. My mind was completely overwhelmed with the numbers and percentages of risk that he gave me. It was difficult to keep it all straight.
He said that if I tested positive for the gene that my chance of cancer increased greatly, up to possibly 85%. He then went on to explain that there is an incidence of false negative results and that there could possibly be a BRCA3 gene that has not yet been detected. That really threw me for a loop. Will I trust a negative result to be a true negative? Or will I still live in fear that somehow a gene inside of me wasn't detected and I'll still end up with cancer?
At the time I decided that I would have my blood drawn and submit my claim to insurance to see if they would cover it. Apparently there is only one lab who does this testing, and it's such an intricate process that the cost is nearly $3200. Not cheap. I figured my insurance would cover it and I'd just go from there. Of course, I figured wrong and Blue Cross Blue Shield decided that I didn't have enough first-degree relatives with cancer. I needed just one more. Wow. Whatever.
So then I went through the decision of whether or not to pursue the testing on my own. I wrestled with it and finally came to the conclusion that I didn't really think I wanted to spend that amount of money to still possibly be uncertain. If it was a simple positive or negative I would do it in a heartbeat. Knowing my luck though I would get a negative be told that there was a good possibility that it was a false negative. Then what?
Last Friday my newest People magazine arrived in the mail with a 4 out of 4 stars review of the new memoir by Jessica Queller titled Pretty Is What Changes. The book is about Jessica's journey after testing positive for the BRCA1 gene mutation and her "impossible choices". The article states, "Her brave, inspiring journey lends credence to her message: "Scientific advances give us new opportunities to live," she writes. "Seize them."
I pre-ordered the book from Amazon.com and am anxious to read it. It's such a hard decision and sometimes I'm not even sure if I really want to know if I have the gene. What if it doesn't matter? What if all the preventative measures don't even matter in the end? Do you just live for today or do you try to save tomorrow?
9 comments:
I wouldn't get the test done, because in this day and age of terrible insurance companies if you DID get a positive, I would imagine you run a million times higher chance of being dropped by your insurance, and you'd have a heck of a time ever getting new insurance if you tested positive... You know? That would be a big worry for me, and if it's still so inaccurate, I would just be hyper careful about being checked for cancer regularly and then yes, live every day to the fullest. You take so many risks every day, crossing a street, being in the car that you never know when you're going to die, history of cancer or not.
If you knew there was a chance you would get hit by a bus tomorrow and you could avoid it by not crossing that street, wouldn't you do it?
The analogy is much more simple than what you're going through, but it was what I asked myself before taking the test.
In the end, you will make the decision that's right for you.
Thanks to both of your comments! I definitely have some serious thinking to do. I'm anxious to receive the book I ordered and see another woman's perspective on the issue. Knowing that I have siblings and children who can also be affected by my decision weighs heavily on me as well.
Anonymous, I hope everything turned out well for you!
I am BRCA1 positive, as are my 2 sisters and my mom. My mom has had 4 different cancers (not reoccurances). My sisters and I have all had surgeries to prevent ovarian and breast cancer (yes, as extreme as you are thinking). One of my sisters, when she had her oopherectomy/hysterectomy surgery, actually found she already had cancer and had to undergo chemotherapy treatments. We have had quite a journey together, all of us. You can read/watch more about our stor(ies) by following the links I've pasted below. Feel free to email me if you want to chat.
Stephanie
p.s. Insurance has paid for all of our testing, screening and surgeries. There is a bill before congress that, should it pass, will make genetic discrimination unlawful.
Links:
The TODAY Show (aired December 20): http://www.msnbc.msn.com/id/22343990/
Local Portland, OR station KATU (aired evening of December 20): http://www.katu.com/news/specialreports/12668482.html#
My local paper, Whidbey News Times (Scroll down to December 1 story titled, “Gene BRCA1: Three sisters go in for mastectomies”): http://whidbeynewstimes.com/
Local Seattle station KING5 (originally aired September 2005): http://www.king5.com/health/specials/cancer/stories/NW_060407HEKcancerprevent_mecheSW.25fe72ba.html
Wow, that is a tough call. I also have a high-risk myself having had both of my grandmothers die of cancer (one in her 60s, one in her 80s) and having my mom diagnosed with breast cancer 2 years ago. I'm not sure I would want to be tested, thought it hasn't been brought up by any of my doctors yet. I agree somewhat with "full of heart" here in that there are so many other risks to take, the best you can do is just be very vigilant in having yourself checked regularly and making note of anything that may seem "off" to you.
Personally, I'm just ticked that they don't have any tests out there that can give more accurate data than the ones they've got. Mother (I'm Margo's sister) has been gone for 15 years now, and it hurts that there's still no way to prevent other girls from losing their moms.
That said - I'm kind of with Full of Heart on this one. In the end, what will happen will happen - and none of us will be safe from it (that's not my quote - it's borrowed from someone else... don't know the name). Basically, you can't control the things that happen in life.
I understand the point about not crossing the street if you knew you'd be hit by a bus... but this isn't that clear. This test would say: you may or not get hit by Bus A on Street B. It doesn't say when... it doesn't say for sure... and I'd hate to miss the beautiful flowers on Street B just because there may some day be some possibility (or not) that stopping to smell the roses would get me smashed.
Of course, I'm not the mother of four beautiful young children. I have no children - having a hystorectomy or a mastecomy at this point in my life would strip me of my dreams of motherhood, so for me - right now - knowing that I may be at higher risk for breast and/or ovarian cancer would only scare me - it wouldn't cause me to take drastic measures.
I choose to live my life more vigilantly instead. I try to keep my weight down so that a sudden abdominal weight gain (caused by a growing ovarian cyst) would be easier to detect; I take the birth control pill to keep my hormones level; I monitor every funny feeling I have; I have an annual exam and make sure I trust my doctor to be alert, given my family history.
I know a woman (now in her mid-40s)who survived ovarian cancer. She discovered a problem one night while playing Wallyball (of all things). She caught it early, and she survived. In the end, that's my hope - that if I suffer the same fate as our mother, I'll find out about it early enough to do something.
Stephanie, what a story! I checked out the link to the newspaper article and I think it's great that you and your family are spreading the word about this issue. Ovarian cancer is such a silent killer and anything that can bring it to light is a good thing, in my opinion. Thank you so much for the offer to contact you and discuss this further. I may just take you up on it! ;) (I have a good friend who moved from Oak Harbor a couple years ago. Wonder if she knows you...)
Dina, thanks for your comments girl! ;)
Em, we were writing at the same time I guess. ;)
Thank you for your input. I see your points and they are definitely valid. Being done with children (much to my dismay!) does put a different twist on things for me however. I do appreciate knowing your take on things though.
And I'm with you, why have no advances been made since Mother died? No one should have to go through what we, and so many like us, have endured.
I'm interested to hear if you've finished the book yet and what your thoughts are now. I probably would not ask my husband to spend that much $ on a test either but would just pray about it and hope the right answer or cure comes to me.
Post a Comment