It’s Time to Start Calling National HBOC Week & HBOC Syndrome Something Else

The last week of September (or as is the case this year, the last two days of September and first five of October) is designated as National Hereditary Breast and Ovarian Cancer (HBOC) Week. It’s sandwiched right in there between Ovarian Cancer Awareness Month and Breast Cancer Awareness Month.

This designation came about in 2010 after a Congressional resolution was passed thanks to the advocacy work of FORCE: Facing Our Risk of Cancer Empowered.

National Previvor Day was designated as the Wednesday of HBOC Week and has since been recognized as well.

I should mention that most breast cancers do not have a hereditary link. Most are sporadic, and I realize some of you reading this post might not care that much about we do or do not call this particular week and syndrome.

And yet, I hope you do care at least a little.

Everyone’s opinion on this matters, well, to me anyway. So, feel free to chime in with a comment even if you’re not part of this particular subset of cancer people (those who do have known hereditary risk).

Here’s the thing, I’m wondering if it’s time to start calling this particular week and HBOC syndrome, too, something else.

Why?

Because National HBOC Week and HBOC syndrome can sound misleading. The words suggest, and therefore, potentially imply (though inadvertently), that men are not part of the equation, do they not?

And this is a problem.

Both sexes carry BRCA1 and 2 genes. Both sexes can be impacted if an individual, male or female, is harboring one of these potentially deadly gene mutations. Both sexes can be carriers and therefore pass the gene mutation to their children – whether they ever develop cancer themselves or not. Both sexes need information in order to assess individual, applicable risk.

The above facts are still not widely understood. This means not everyone who might benefit from genetic counseling and possible testing for a BRCA1 or 2 mutation (and other identified mutations and syndromes) realizes their potential risk of developing cancer and of passing this risk on to their children.

Think about it. The term HBOC syndrome is confusing. And it’s a mouthful to say. I still have to stop and think about the order of those letters every time I type them, I kid you not. And I always think about HBO, the TV channel. (Or is it just me?)

When you hear the term HBOC syndrome (or National HBOC Week), you probably don’t think about men, do you?

At least not right away. Sure, men have breasts, but ovaries, no. And the misconception is very much still out there that breast cancer is a disease only women get.

Men can and do have BRCA gene mutations. Men can and do get breast cancer. (However, not all cases involve a BRCA mutation.)

Having a BRCA gene mutation also increases a person’s risk for other cancers such as melanoma, pancreatic and prostate. Obviously, men can and sometimes do develop these cancers too.

Which is precisely why what we call this week and this syndrome matters and perhaps why the terminology is in need of an update.

What if we called National HBOC Week something simpler and more inclusive such as, National Hereditary Cancer Week?

Such a name would sound more male inclusive, would it not? Such a name would also sound more inclusive of other types of hereditary cancers.

After all, hereditary cancer is NOT just about BRCA mutations, nor is it just about breast and ovarian cancers.

Other identified gene mutations associated with hereditary breast and ovarian cancers and other types of cancers include:  PALB2, CHEK2, ATM, BRIP1, and RAD51C, and RAD51D. There are other cancer syndromes that greatly increase risk of cancer as well. And again, men are impacted too.

For example, as stated on FORCE’s site:

Several other types of cancer syndromes have been identified, each with a particular set of signs. Some of these syndromes increase risk of breast cancer including Cowden syndrome (PTEN mutation), Li Fraumeni syndrome (TP53 mutation), CDH1 mutations, and STK11 mutations. Lynch Syndrome is a hereditary cancer syndrome that increases risks of many cancers, including colon, uterine, and ovarian.

Others have suggested renaming HBOC syndrome. Colin C. Pritchard, a colleague of Mary-Claire King, suggested renaming it King Syndrome and explains his reasoning in a recent article titled, New name for breast-cancer syndrome could help to save lives.

That might be a good suggestion. Then again…

Amy Byer-Shainman, blogger, advocate for those impacted by hereditary cancer, film producer and author of Resurrection Lily: The BRCA Gene, Hereditary Cancer & Lifesaving Whispers from the Grandmother I Never Knew: A Memoir, likes the idea of a name change but disagrees that King Syndrome would be a good choice:

I’m in favor of changing the name if there is a new name that illustrates HBOC syndrome in a more meaningful way; a name that would include male cancers associated with the syndrome. I have been thinking about this a lot, and I don’t know what the right name is: but I know what the correct name is not. It is not King syndrome.

1) While the name King honors Dr. Mary Claire King who discovered BRCA1 syndrome, it completely omits Mike Stratton who led the team that discovered BRCA2. 

2) Also, using the name KING by itself has male connotations which would only perpetuate confusion about BRCA amongst healthcare providers and individuals. 

Rod Ritchie, advocate for men with breast cancer and powerhouse behind MaleBC.org, agrees the names should be changed and shared this:

Living with breast and prostate cancers has always made me think I have a genetic predisposition to these cancers, but my BRCA test found I had a variation of unknown significance (VUS) of the BRCA1 gene, and I was clear for a panel of 30 genes associated with these cancers.

I must admit that when I heard of HBOC Syndrome, I was surprised to find that P for Prostate was not in the title, then others could argue, P for Pancreatic and M for Melanoma, might be there too. When it comes to the time for clarifying this acronym and thinking of a catchier name for publicity purposes, my guess is that HBOPPM Week will not make the final list.

I’d suggest the week should be Risky Gene Week.

Well, that is a catchier name, for sure.

Georgia Hurst, previvor with Lynch Syndrome, Tweeted that she thinks a name change is a “stellar idea”. In addition, she said the following:

I think Hereditary Cancer Week would be way better – more inclusive of men and other hereditary cancers such as Lynch Syndrome, pancreatic, prostate, etc. I think HBOC does imply the impact is mostly on women.

Agree.

Ellen T. Matloff, MS, CGC, Genetic Counselor, President and CEO of My Gene Councel, said this:

Great idea to rename HBOC syndrome! When we focus on breast and ovarian cancer only, it does a few bad things: it makes us focus only on women and excludes men, and it can make us ignore all of the other cancers that can be part of this syndrome including pancreatic, Fallopian tube, primary peritoneal, etc.

I’m in favor of changing the name of HBOC Week too, and I never personally use the name HBOC.

Again, I agree.

Sue Friedman, Executive Director of FORCE, offered these insights:

Over the years, genetic testing technology has evolved, but genetic terminology has not. HBOC doesn’t represent the entire spectrum of hereditary cancer syndromes or mutations. Panel testing can identify other genes–such as ATM, PALB2, PTEN and more—related to inherited breast, ovarian and other cancers.

There is overlap in cancer risks between different mutations and syndromes. Lynch Syndrome—most commonly associated with colorectal and uterine cancer—has also been linked to increased risk for ovarian, pancreatic and prostate cancer. March 22 is Lynch Syndrome Awareness Day. May is PTEN Awareness Month. But what about other mutations and syndromes?

It’s hard to know the best approach, especially when the term HBOC persists in the medical literature. If our goal is more awareness, perhaps we need more days, weeks and months to accommodate all the mutations and syndromes. On the other hand, consolidating our efforts and designating a new name and one day annually to represent ALL hereditary cancers may be more effective. Despite the differences in risk, all people with cancer-linked inherited mutations share similar challenges. Designating a common awareness day under a new name could bring us all together in a show of solidarity.

Seems like folks I asked about this are in agreement about the need for change in terminology regarding HBOC syndrome and HBOC Week.

So, now what?

I’m not sure, and I’m not in a position to suggest what would be the best alternative name for HBOC syndrome. But I do feel comfortable suggesting that a discussion about a potential name change might be in order. Admittedly, coming up with a new name that would please everyone might be a challenge.

I’m also comfortable suggesting that a discussion about changing the name of National HBOC Week to just National Hereditary Cancer Week might not be a bad idea either. And this one seems pretty doable.

What do YOU think?

How do you feel about changing the name of HBOC Week and HBOC Syndrome to something else? Do you have names to suggest?

Do you have a known gene mutation of any sort?

Have you had genetic counseling and/or testing?