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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?

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Jan Hasak

Monday 3rd of October 2011

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

Nancy

Monday 3rd of October 2011

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.

Beth L. Gainer

Thursday 29th of September 2011

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....

Nancy

Thursday 29th of September 2011

Beth, Thank you for your comments. I guess I know how you feel about Pink/October!

TC

Thursday 29th of September 2011

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.

Nancy

Thursday 29th of September 2011

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.

BreastCancerSisterhood.com

Wednesday 28th of September 2011

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?

Nancy

Wednesday 28th of September 2011

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.

Kathi@The Accidental Amazon

Wednesday 28th of September 2011

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

Nancy

Wednesday 28th of September 2011

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.

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