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Ham anyone?

I’m not much of a ham eater.  In fact, I think the only time I ever ate ham was in a sandwich marked turkey and I was convinced it was just very pink turkey.  It really doesn’t have anything to do with my religious beliefs—even though I am Jewish and I grew up in a house that didn’t eat ham or any other pork products.   Despite this, my new favorite company is HoneyBaked.  If you clicked on the link, you may have already discovered why.  If you haven’t, let me explain.  A short while ago, 51 HoneyBaked stores in 7 states including Michigan decided to support the fight against breast cancer—this alone puts any company at the top of my list.  But, HoneyBaked went one step further and supported my absolute favorite organization, FORCE.  Not only are they donating money to FORCE, they are promoting awareness of hereditary breast and ovarian cancer.  So here I come HoneyBaked and hopefully my readers will join me too.  Help support this company that is helping support me and so many others!  And if you don’t eat ham, they’ve got lots of other great food.  Make sure to check out their website where you can order online, print some coupons and view their catering menu.  Thanks again HoneyBaked!   

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Another Anniversary!

I completely forgot about my very important 1 year anniversary today until my mom mentioned it to me.  It’s been exactly one year since I had my ovaries, tubes and uterus removed.  Anniversaries are always a good time to reflect (especially when you don’t forget about them).  So now that my mom jogged my memory, I was thinking how lucky I am. I’m in menopause but never reminded that I’m in menopause unless my friends are talking about their miserable periods, their crabbiness or buying tampons.  Wow.  I’m afraid to say I have no hot flashes – at least none that are bothersome, I sleep like a baby when I’m not writing blogs, working or watching stupid shows—like the bachelor.  Yes,  menopause has been good to me.  Is it Prozac? Not sure.  Whatever it is, I’m one happy camper.  If you are BRCA and worried about prophylactic surgeries causing bad menopause symptoms, there are some people that escape them all together and just enjoy the positive benefits.  Hopefully you’ll be one of them too. 

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.

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