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National Hereditary Breast & Ovarian Cancer Week

Did you know September is Ovarian Cancer Awareness month? It’s also Prostate Cancer Awareness Month and Children’s Cancer Awareness Month. There are more, and I mean more in September.

Appropriately sandwiched in there before the arrival of the “BIG ONE,” Breast Cancer Awareness Month also known as Pinktober, is National Hereditary Breast & Ovarian Cancer Awareness Week. Sometimes I think there are way too many of these awareness weeks and months, but then again…

The purpose of NHBOC week is to raise awareness about genetic predisposition to breast and ovarian cancer and to help make people better aware of options available to them such as genetic testing for possible BRCA1 and BRCA2 gene mutations, genetic counseling, prophylactic procedures and other possible preventative measures.

Some hereditary predispositions are still not understood. For example, a person may test negative for BRCA1 or 2, but there still might be a cancer cluster or a distinct pattern of hereditary cancer in their family. This may be due to other yet unknown genetic links or due to a variety of other reasons.

Hence, that leads to another purpose for NHBOC week, which is to call for more research and resources to be made available for families coping with an inherited predisposition to breast and ovarian cancer, whether they are BRCA linked or not.

This awareness is for men as well as well as for women, as men are not immune to developing breast cancer and may also be at higher risk for prostate cancer if they are found to be BRCA1 or BRCA2 positive or have a strong familial history of cancer.

The designation of National Previvor Day, this year September 28th, draws even more specific attention to individuals who carry a hereditary predisposition, but have not yet developed cancer. Perhaps during this week or on this day they will ponder steps they can take such as demanding earlier and more diligent screenings.

A good resource on this topic of hereditary cancer is the national non-profit organization called FORCE: Facing Our Risk of Cancer Empowered. It was founded in 1999 and is devoted to improving the lives of those affected by hereditary cancers.

If you suspect a possible genetic link exists in your family, take action by getting informed. Find out how to “arm” yourself. Speak with your doctor about your family’s cancer history. And this means discussing both side of your family tree. Breast and ovarian cancers are also passed down from the father’s side of the family. Sometimes even those in the medical profession too easily overlook the paternal side. Look for patterns. Think about testing when appropriate. Ask questions. Demand answers.

And lastly, make decisions that are right for you.

Have you discussed hereditary disease patterns in your family tree with your physician?

Have you had, or have you considered, genetic testing?

Do think there are too many “awareness weeks/months?”

Just a few sites with related info:

National Cancer Institute Fact Sheet on BRCA Stats

National Breast Cancer Coalition

Previvors and Survivors

Gilda Radner Familial Ovarian Cancer Registry

Ovarian Cancer National Alliance

Hereditary Cancer Research Fund

Teal Toes

Three books I like about BRCA are:

Positive Results:  Making the Best Decisions When You're at High Risk

Positive Results:  Making the Best Decisons When You’re At High Risk by Joi Morris and Ora Karp Gordon, MD

What We Have

What We Have by Amy Boesky

Beyond the Pink Moon:  A Memoir of Legacy, Loss & Survival by Nicki Boscia Durlester

Do you have resources you’d like to share?

24 thoughts on “National Hereditary Breast & Ovarian Cancer Week

  1. Nancy,
    Thank you for still more education. Every single day I see something I didn’t know. THIS speaks to me in ways I can’t begin to describe. I’m crying for my daughter right now. She is officially a previvor and I can’t have that. We have a family cluster of disease. It started with my mom’s first dx in 1987 when I suppose I became a previvor. In 2006, came my dx. BRCA testing=inconclusive in me and mom doesn’t match. Then, mom with 2nd primary in 2007 (yes less than one year after my surgery, she was back in an operating room). Then, my baby sister and my other sister, for all intents and purposes, she, too had significant cell changes for my breast surgeon to say, “this would have been cancer within a couple of months.” We are four first degree relatives with FIVE breast cancer dx. It MUST stop now. I’m more determined than before to make a difference. I don’t know how, but I WILL. Thank you, Nancy. Thank YOU!

    Love,
    AnneMarie
    xoxox

    1. AnneMarie, I’m sorry your family has had to deal with so much cancer. It’s so unfair isn’t it? Thanks for sharing and thanks for your determination to make a difference. You already are doing just that!

  2. Nancy,

    Thank you for the important work you do to raise awareness. Your compelling posts offer valuable information to previvors, survivors and women in general who are doing their best to choose health and live long, active lives.

    Many thanks for showcasing my memoir, Beyond the Pink Moon, which intimately chronicles my journey after a Stage IIA breast cancer diagnosis. My story begins with my mother who was diagnosed with the disease in 1962, a time when breast cancer was only discussed behind closed doors. I provide unique insight into being part of a large Italian-American family with the BRCA2 gene, speculated to have been passed down by my maternal grandfather. My mother and her six sisters all had breast, ovarian or fallopian tube cancer and two of her brothers had prostate cancer. My story is not unlike countless other BRCA carriers whose families suffer staggering losses due to cancer.

    With humor and pathos I share the highs and lows of my journey, writing candidly about finding the right team of doctors. My story is told through the eyes of a daughter who shares an unbreakable bond with her mother. Beyond the Pink Moon includes an Afterword about my only daughter, who never had the pleasure of knowing her grandmother, yet shares the same genetic mutation. And so… the legacy continues.

    Thank you, Nancy, for allowing me to share my journey. Together, we can save lives.

    All the best,

    Nicki Boscia Durlester

    1. Nicki, Thanks for your comments and for sharing your story in your book. Your family certainly has had to deal with an incredible number of cancer cases. It’s unbelievable really. Telling your story will surely help many others and I commend you for your honesty and candor in doing so.

  3. Nancy,
    I am Anne Marie’s mom, and I can tell you first hand how horrible it is to see my children go through breast cancer. I am so proud of what Anne Marie is doing, and all of the ladies sharing their stories. I pray for a CURE, not a band-aid. God bless us all.
    Mary Ann

    1. Mary Ann, Thank you so much for your poignant comments. They brought tears to my eyes. You’re absolutely right, what we need is a cure, not another band-aid. And I’m sorry you’ve had to witness so much breast cancer in your family. Thanks again.

  4. I don’t pay attention to awareness weeks probably because there are too many. But some people need them because they will never seek out information on their own. They need to be told where to get information or that the information even exists.

    I am torn between whether or not to get genetic testing. Part of me wants to obtain all the information I can while 100 percent of me wants nothing to do with the nonhelpful healthcare system.

    One thing that is especially irritating to me as a 28-year-old is that doctors don’t seem to take me seriously as someone who could be at risk for breast cancer even though several close relatives of mine have had it. They are trained not to take someone my age seriously unless I do genetic testing because this is how their system works. They don’t have the ability to imagine why someone under 30 would even consider, say, a mammogram. Basically, the system is set up for someone like me to take certain steps in a particular order. It is not designed for me to make my own decisions about my own health. I know I need to take the responsibility to find a doctor who knows how to listen while offering suggestions, but for now I will just rant.

    1. Lindsay, I know what you mean about all those awareness weeks. Sometimes I think it is over kill, but then again they do serve a purpose I guess. It’s a struggle deciding about the genetic testing I know. It’s deplorable when doctors don’t take you seriously, especially considering your family history. If they don’t listen, you need to find different doctors, even though I know that is a big headache. You have to make the decisions that are right for you and I know you will do that. In the meantime, I do love a good rant!

    2. Lindsay,
      I know how you feel about not fitting the classic profile of someone who should have to worry about breast cancer. Neither did I, but I got it. When I asked to be tested for the BRCA gene, once again I didn’t fit the profile because there was no BRCA-related cancers in my family. Thank God, I stood my ground and demanded to be tested because when the results came back, I was BRCA2+. Surprise, surprise! Demand to be tested!

  5. Nancy, I am not sure we have National Hereditary Breast & Ovarian Cancer Awareness Week here in Australia.
    Apparently my chest wall recurrence is not actually seen often in Australia and yet my oncologist has seen it in Africa. I believe National Geographic asked for some type of tissue sample a couple of years ago, allowing them to check DNA which sounds perfect for me at this time. Maybe it is up to me to follow up now that I have learned of the possibilities.

    1. Chez, This designation is new here. I believe this is only the second year. Your case seems to be quite rare. I hope your oncologist is continuing in his good ways and that your pain is manageable. Is there a pattern of cancer in your family, Chez? Thanks for commenting.

  6. Nancy, on my mother’s side of the family, there is one of those suspected cancer clusters, partly known, but not entirely testable at this point. This is a tough subject for so many people. When I tried to gather info before talking to a genetic counselor, I found myself getting stonewalled by some of my extended family. In 2 cases, I was told that family members that I knew had had cancer flat-out didn’t! So much denial. And fear. And the consequences of having such knowledge are fraught and still leave people not knowing what to do or where to turn.

    Thank you for this post. xoxo

    1. Kathi, I know what you mean about the fear and denial. Genetic testing and/or counseling is a very personal choice and some family members want nothing to do with any of it. I understand that. Sometimes the consequences of knowledge are too much to deal with. Then again, sometimes not knowing is even worse. Everyone must make choices that are right for them. Thank you so much for your comments, Kathi, and for adding to this discussion.

  7. Nancy,
    I’d like to see more “follow through” months as in “what are foundations doing to follow through with where they’re giving their research dollars? Do they get updates or do they just blindly send more money to the same research group the next year without knowing if they’re on the right track? We’re aware, already! Are they?

    1. Brenda, I agree. We definitely need more follow up regarding where dollars are being sent and what exactly they are being spent on. It’s an important point that cannot be made too often. Thank you.

  8. Nancy – the American attention span is that of a gnat (apologies to any offended gnats). We are being “clockwork oranged” with “awareness.” Too many “causes” to be “aware of” with little substance forthcoming. Too many “baubles” on the retail shelf manipulate our “concern” into retail therapy. Far far far too many awareness weeks, months, days…lifetimes. Eyes glaze over, brain shuts down, and all we are is aware of how fatigued we are about the myriad of ways we can die. Personally, I am tired of the platitudes and pandering. Pom poms, feel-good rallies, and “Promises.” It is time that the cancer industry put its dollars — all of the raised dollars, into achieving results. And less into the next profit-breaking marketing campaign.

    1. TC, Well, you make a good point about all the awareness designations. Sometimes I do wonder if it’s all over-kill. And you’re right sometimes, as is the case with the pink, it seems to morph into being more about a retail gimmick. Sad commentary. Thank you so much for commenting.

  9. Nancy,

    I love this posting! As usual, you do a great job of informing the public about breast cancer and other diseases.

    Frankly, I think it is ridiculous to have a month for anything. It really diminishes the importance of the disease, as each condition happens throughout the year.

    It’s overwhelming and silly, I believe. For example, ask someone with ovarian cancer whether they feel so special in September.

    And the pink in October? OMG….

  10. Thanks for bringing to OUR consciousness all these awareness events. Personally I think there are too many. I’m totally confused and can’t keep track of them all. I have enough issues with my body to be aware of, without finding out more to be anxious about. And I feel guilty if I don’t attend or remember the awareness events that affect my loved ones and friends. Will they be hurt that I didn’t acknowledge them? I hope not. I hope we are past that.

    And I can’t wait to be past Pinktober. Especially because my non-wedding anniversary is this month and even though my birthday and my brother’s birthday are this month.

    Seasons come and seasons go. Thank God!
    XOXO,
    Jan

    1. Jan, I know what you mean about the confusion. I think there are too many awareness days, weeks and months too, but then who would we want to leave out? No one. It does seem unfair, though, the huge amount of attention breast cancer receives in October. It doesn’t feel quite fair or even right. But as you said, October too shall pass.

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