Category Archives: brca

Thank you Detroit Jewish News!

The Detroit Jewish News ran a story about my involvement with the Michigan Breast and Prostate Cancer tax check-off Initiative.  I can’t stress enough the importance of this campaign and what even a small donation can do.  The money gives low income women without insurance access to mammograms and treatment.  Early detection is currently the number #1 key in beating this disease.  Read the article, visit the site, pledge your support and become a fan of the facebook page.  Most importantly spread the word and don’t forget to grab a badge.  I did my taxes yesterday and it was simple.

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Are you kidding me?

Ok.  Not so happy with the latest headline.  “Million Women Study Shows even Moderate Alcohol Consumption Associated with Increase Cancer Risks.”  Basically, the take-away message from this study is don’t drink, at all, ever!  I’m not much of a drinker.  In fact, after throwing up through several weeks of 3 pregnancies and going through chemotherapy, I’ll do anything to avoid a hangover.  But, I do love a glass of wine.  And I’m not certain I’m so willing to give it up completely.  I’m curious if this study dug deeper into cancer recurrences, BRCA or anything else specific to my situation.  I guess I’m just trying to rationalize my way out of practicing the advice of the latest study.  You can take away my breasts, ovaries, uterus and fallopian tubes, but do you really need to take away my glass of wine?

Fun vacation, new career, fundraising and more…

It’s been three weeks since my last blog so I figured; it’s about time I post. Life is busy lately—in a good way. Here’s what’s going on in my world:

We just got back from a great family vacation in Arizona combined with a wedding of one of Jon’s old college friends. Our last wedding with this group was in 1998 so it was nice to reunite with the old crew. It was also great to spend time with my parents and grandmother in sunny Arizona. We were there last year this time too—only I had a lot less hair.

February 2008

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February 2009

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In several previous posts, I’ve mentioned social media and my business partner, Jim Tobin. I’ve become increasingly interested in the social media world over the past year. As a result, I’m taking on an increased role in my work life and starting a Detroit office of Ignite Social Media. It means I’ll be working more but I’m excited for the new challenge. In a lot of ways, I credit breast cancer for my new interest and career opportunity.

We’ve sold over 100 tickets for the “Annie” Fundraiser on May 10th. I’m excited with all the enthusiasm and still have more tickets for anyone interested.

 
And Ta Ta Breast Cancer is up to 10 team members and still more joining. Check out our team page if you’d like to join and for ways to support our team. If you have any ideas for fundraisers, send them along. I’m always looking for new fun ways to raise money especially ideas that don’t cost people much money and things people would potentially purchase anyways. I like to call it “fundraising in the new economy”.

Speaking of new economy, I was completely wowed and inspired by our president last night. And how about the 1.26 billion dollar infusion directed at cancer research? That’s my kind of infusion.

Why Knowledge is Definitely Power

Last night we had another great FORCE meeting at Beaumont.  I always walk away from the meetings smiling.  I’ve formed some really nice friendships with some of the woman in the group. 

I really felt the power and importance more than ever last night.  At our first meeting, there were two sisters.  Their dad had just been diagnosed with breast cancer and both sisters were contemplating getting tested.  Last night, all three joined us for the meeting and shared their story. 

After the last meeting, they both got tested—one had the mutation and one did not.  The sister with the mutation went for her initial MRI screening and was immediately diagnosed with cancer.  She is currently undergoing chemo and was lucky to catch the cancer when she did.  She found her cancer because of her knowledge of the BRCA gene and her risk factors.  This is why we need to work to create awareness and make sure people understand how their family history can impact their lives. 

Our next meeting will focus on a very challenging but necessary topic—how to talk to your kids about the BRCA gene.  I’m looking forward to some professional insight and hearing ideas from the rest of the group.  I will share what I can in my blog post after the meeting but if you live in Southeast Michigan, we’d love to have you join us.  Come check out the power of this group for yourself.

OvaSure or not?

On Wednesday, we had another great FORCE “Positively Empowered” meeting. The weather was terrible, the roads were terrible and the turnout wasn’t great but those of us that were there had a really nice time. We could have stayed for hours. In fact when the meeting was over, we reconvened in the bathroom for a show and tell and ended up chatting an additional 20 minutes. I’m happy to show off my new perky breasts to anyone considering a mastectomy. I was never one to go to support group meetings but these are so much fun and I’ve met so many super women.

I’m so thankful for Whitney Ducaine at Beaumont for working so hard on these meetings. She gave a really great overview on the new diagnostic test for Ovarian Cancer—OvaSure. While some researchers felt this was the best invention since sliced bread, there is lots more work to be done. Whitney agrees completely and feels this is not yet a recommended diagnostic test. In the one study that was done, they did not look at any BRCA women which would have been a critical component in determining the effectiveness of the test. Whitney did a great job of showing us the limitations at this point.

From a patient’s point of view, it’s always hard to know who to trust, who to listen to and what studies to read. It’s especially difficult when well-respected research centers put out information that is highly contested. And the more questions you ask, the more confusing it can get. Luckily, research plunges forward and the more studies we have, the more we will know.

A decision I’m glad I don’t have to make

There’s been lots of talk in the BRCA community about screening embryos to find the ones without the BRCA mutation.   This is a process called pre-implantation genetic diagnosis.  This week, in Britian, a new baby will be born free of the BRCA mutation.  This is so interesting to me, and to be honest, I haven’t really fully developed an opinion.  On the one hand, thank goodness they didn’t do that 37 years ago because where would that leave me?  Yikes.  Yes I went through breast cancer and, no it wasn’t fun, but other than that, life is good.   But I suppose you can’t really think about it that way. 

OK so let’s think about it another way.  BRCA is only one risk factor of many for breast and other cancers.  Yes, it increases your risk substantially but so do lots of things and there’s no way to make sure a baby is born without a gene mutation that we’ve yet to discover.  And what if there are other worse things wrong with the embryo that we don’t even know about yet?  I tend to be a positive person so I’m going to go with the fact that these babies are going to live a long healthy life.  Just like tons of women with BRCA mutations.  And moving forward, diagnostics, screening and prevention of these diseases is only going to get better. 

But I get why someone would choose this option.  In the case of the woman in Britain, every woman on her husband’s side had breast cancer.  And as a woman about to conceive a baby, this can be particularly scary.   So really the bottom line with this post is that, I don’t have a real opinion one way or the other.  And I guess that’s good because this is a personal decision—one that I will fortunately never have to make.  I have my 3 beautiful children–with or without the mutation remains to be seen.    And as I’ve said before the only thing I can and will continue to do every day is to fight against cancer—to do my part so that it isn’t an issue for my children or any future generations.     

 

 

Why do some BRCA women escape breast cancer?

I inherited my BRCA mutation from my father who inherited it from his mother.  This was confirmed when I had my genetic test which determined I had the exact same mutation as my father’s cousins on his mother’s side.  So how did my grandmother make it to nearly 70 without breast, ovarian or any other cancer?  Was it simply luck that she beat the odds?  After all, you only have an 87% lifetime risk of breast cancer so there is still a very small chance that you can live a long life without ever developing the disease?  And sure ovarian cancer is a smaller risk but still significant. 

Hmmm, my grandmother was a heavy smoker, worked in a photography studio with lots of chemicals, ate poorly, was always overweight and went 30 years without going to a dentist.  Was this the key?  And me, I’m not perfect but I certainly took care of myself, like most of the young woman I know who have battled this disease.  So scientists and researchers are looking into this specific issue.  Why have some Ashkenazi Jewish women with the BRCA mutation managed to escape this disease?   If they can find answers to these questions, they can begin to figure out how to prevent cancer (outside of the more drastic preventative measures available today) in women with a BRCA mutation.   

BRCA testing–it’s anything but simple

Myriad Genetics is launching a public awareness advertising campaign in Florida to promote testing of a BRCA mutation (AKA the breast cancer gene).

As both a healthcare marketer and a woman with a BRCA mutation, I’m thrilled that they are raising awareness. But I’m equally concerned. I should preface this by saying I haven’t actually seen the advertising materials but I’ve seen some press on the campaign. They quote an OBGYN as saying it’s a simple blood test. Sure it is. Most of these tests are simple but it’s the results that are not in the least bit simple. The article goes on to say: “Although no test is completely reliable, doctors recommend that all women know their BRCA status.”

Does that mean that all women should walk into their Primary Care Physician or OBGYN and take the test? Should women start doing this on their 18th birthday? Yikes. Are these doctor’s equipped to counsel women if they do have the BRCA mutation? Are they able to knowledgeably talk to the women prior to testing to discuss the implications of the test? BRCA is not something to take lightly.

If you have a known BRCA mutation, you have up to an 87% lifetime risk of developing breast cancer and up to 44% chance of developing ovarian cancer. Genetics Counselors are the people that should be drawing your blood, counseling you and guiding you through the process. They have the knowledge, the training and the time to give you what you need. I only hope that Myriad is making this clear in their advertising. This test is anything but simple.

 

 

 

 

 

2 sisters, one random test, 2 BRCA mutations

Prior to having breast cancer and finding the BRCA mutation, I had no idea that Ashkenazi Jews had such an increased likelihood of carrying the genetic mutation (1 in 40 vs. 1 in 400 in the Ashkenazi Jewish population). Early last summer, Ashkenazi Jewish Women in Toronto were offered the opportunity to take the genetic test for free even if they had no family history of breast cancer.  This was a test to determine if women in Canada should be tested for BRCA just because they are Ashkenazi Jews.  In an earlier post, I mentioned a friend who recently found out she had the BRCA mutation.  Fortunately for her, her sister lives in Toronto and decided to sign up for the free test.  Now both she and her sister are making preventative decisions to ultimately avoid a cancer diagnosis.  This story raises a very interesting issue.  Should Ashkenazi Jews be tested for the mutation regardless of their family history?  What if my friend’s sister hadn’t been tested?  Would they have found out their BRCA status only after a cancer diagnosis.  I’m happy for her that both of them found this out and will hopefully avoid travelling down the cancer path.

Kids do say the cutest things…

During my cancer treatment, my kids helped to keep me happy and focused on feeling good.  They also said so many cute things that made me smile.  It’s fun for me to look back at my caringbridge site and remember some of the cutest comments and moments.  For those of you that read my caringbridge site, these stories won’t be new for you. 

My hair started falling out right before Halloween so I had the remaining hair shaved.  For those of you that haven’t experienced hair loss from chemo, it’s pretty uncomfortable when it’s coming out so I was very happy once it was completely gone.  I wasn’t sure how the kids would feel about the bald head but I found out quickly when I heard from another parent that my Kindergartener told her that his mom shaved her head and she looked beautiful.  That thought continued to echo in my head the entire time I was completely bald.  His sweet little friend couldn’t stop telling me how beautiful I looked and even said to his mom “Ellyn had earrings on and everything.”  Love those little boys.

Throughout my bald days, we had many playdates that ended with a couple of kids using my bald head as an art canvas.  I grabbed the washable markers, sat on a chair or the floor and let them decorate my head.   The kids had fun, and it made my bald head a lot less scary. 

Although the little guy was still pretty young, he loved my hats and bandanas.  In the beginning he tried to see if his hair would come on and off too. 

Little guy sporting my pink bandana.  I know he looks like a girl–this was before his first haircut. 

My daughter didn’t really care too much either way about my bald head.  But she had her own funny moments.  Early on, she named my port “lumpy” She made sure to hug me on the others side of my body to avoid an encounter with Lumpy.  One day after a chemo treatment, I apologize for being a little tired and a little cranky.  And her reply was pretty funny.  “I know Lumpy got medicine today” and she looked up in my eyes and asked “Was Lumpy scared?”

And one of my favorite stories was from the day before my last treatment.  I pulled this one right from my caringbridge site. 

“On Tuesday, Michelle convened my 7 year old and three of her friends to help make the brownie cake and cards. At the same time, my 5 year old and Michelle’s 5 year old were busy shopping with Michelle’s mom for an end of chemo gift. I got the cutest, sweetest cards from the 4 girls all decorated beautifully with “No More Medicine” displayed on the cards. One wished me a happy life and said she hoped I never had to do this again. As the girls were sitting around making the cake, they had an interesting discussion. One said, “I know we are doing this because Ellyn has cancer”, to which another responded with eyes wide, “Ellyn has cancer??” That’s when my daughter piped in, “Not cancer, BREAST cancer.” “Ohhhhhh” they all responded.”

Posting my blogs on Trusera.com has given me an opportunity to think back on some of my experiences last year and they weren’t all negative.  Yes, I’m glad they are in the past but I continued to live my life throughout the year enjoying many days and laughing with my kids whenever I could.   

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