Family Secrets

Family Secrets & National HBOC Week

I wonder if this blog post title is going to make some of my relatives squirm a little as they wonder what family secrets I might be divulging…

I’m not too worried though because first of all, not that many members of my family read my blog and secondly, I’m not divulging that kind of family secrets!

Is that a sigh of relief I hear?

Every family has secrets or things no one outside the family knows for one reason or another.

My family is no exception.

The family “secret” I do wish to share about isn’t really a secret at all. Not any more anyway, but it was for a very long time.

This particular “secret” was one hidden for perhaps generations in my family’s DNA. Yes, I’m talking about the BRCA2 gene mutation.

My mother’s breast cancer diagnosis came in 2004. At that point in time we didn’t know about this particular family secret, therefore her treatment plan did not take into consideration this potentially important piece of information.

In 2006 my mother was tested for the BRCA2 gene mutation after a different family secret was revealed to us. She tested positive.

I’m not divulging further details about that other family secret here for a host of reasons…more to come in my book.

I will say that the very first clue about both of these two family secrets came many years ago – on my wedding day in fact. It was a clue, but I didn’t know it at the time. That wasn’t yet possible.

But that’s another story and another secret…

Needless to say, after learning my mother was BRCA2+, our family was more than a bit rattled by this revelation about our family’s gene pool.

We did a lot of reading, a lot of absorbing, a lot of contemplating and a lot of questioning.

Then in 2007 my mother’s breast cancer recurred.

Would my mother’s cancer outcome have been different had we known about this particular family secret at the time of her initial diagnosis? Who knows?

Would her treatment course have been different from day one? Probably.

There are no definitive answers to these questions, though admittedly I have wondered about these things many times.

When a person is diagnosed with any serious illness, you go with the knowledge you have and can garner at the time. You do the best you can and make the best decisions based on what you know at that moment.

Second guessing later on is pointless.

And I’d also like to add, I hold no resentment or ill feelings toward those who came forward and shared family secrets. I am in fact, grateful to them. My treatment path was/is directly impacted by this knowledge.

Now on to the main focus of this blog post.

As many of you may know, this week is National Hereditary Breast and Ovarian Cancer Awareness week.

The focus during this particular week is on hereditary breast and ovarian cancer and even more specifically on families which carry the BRCA1 and 2 gene mutations. However, hereditary cancer is not just about BRCA mutations and hereditary cancer does not just encompass breast and ovarian cancer.  There are other genes/mutations linked to cancer risk. For a list, click here: An overview

We know there are likely even more.

I would like to take this opportunity to encourage readers to sit down with family members and discuss things like family trees, illnesses lurking in the past and patterns of disease, if any, that seem to be apparent in your family’s history. Here are a few tips.

  • Discuss what your ancestor’s lives were like if this information is available. Find out where they came from and attempt to uncover informational pieces about their lives and medical history.

  • Do some digging and figure out how old your grandparents and great grandparents (and as far back as you’re able to go) lived to be and what they ultimately died from. If you can, also delve into the lives of those aunts, uncles and cousins of years gone by.

  • Be sure to look at both sides of your family tree. The paternal side is equally important. Astonishingly, some doctors still don’t inquire about a patient’s paternal side when it comes to discussing family history of breast or ovarian cancer.

  • Take notes and make a record of what you find. There are some helpful tools now available to assist with recording family history. Here’s one.

  • Talk to your doctor if patterns arise and don’t allow your concerns to be brushed aside. 

  • If you do find patterns of breast and ovarian cancer cropping up indicating a hereditary link, visit FORCE, an organization dedicated to offering support to families with hereditary risk factors.

  • If you continue to be concerned about patterns and hereditary issues or have questions, seek out and meet with a genetic counselor. This can be a great help if you are contemplating genetic testing of any sort.

We are learning more and more each day about the role genetics plays in our health as well as in our illnesses.

Having these important discussions about your family’s medical history might not seem important today or even tomorrow, but someday the information you may or may not find just might matter to you or a loved one.

I’m living proof.

Perhaps you won’t find any important medical secrets, and in fact, you probably won’t.

Perhaps you’ll simply learn more about your own amazing family and that in itself is worth the discussion, right?

Communication is always vital within a family.

Sometimes it can even be lifesaving.

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Have you delved into your family history for any reason?

Are there patterns of any disease or health conditions in your family?

Do you know your family's medical secrets?
Do you know your family’s medical secrets?

14 thoughts on “Family Secrets & National HBOC Week

  1. Nancy,

    Thank you so much for this post [and] bring HBOC month to my attention; I had no idea.

    Thank you, too, for the important reminder that family medical history is of increasingly great import in this arena especially.

    Simply
    Stephanie

  2. Family history is a fascinating thing, and I imagine there are many secrets never resolved (or shared). When I was diagnosed, I check around but amazing no one has reported any instances of cancer. This is one particularly anomaly that leaves me completely stumped . . . but I appreciate your point to talk with family members, particularly older ones who grew up in a society where these sorts of illnesses were less discussed. This is important information, and if it can be collected then it needs to be shared.

    Catherine

    1. Catherine, Yes, family history is very fascinating for many reasons. I can certainly understand how you felt “stumped” after your diagnosis. Sometimes there are no family threads at all. Cancer likes to surprise us too. Thanks so much for sharing your thoughts.

  3. Thank you for such an informative post about HBOC. I wasn’t aware about this. It’s good to talk about this mutation because it is so very crucial. I was tested for this mutation and was negative, and it’s so hard to imagine the difficulties you and your family had to endure eventually knowing about this family secret.

    My family lives to old age, even the ones exposed to harmful chemicals. Go figure that I, the supposed health-conscious one, was the one who got cancer!

    1. Beth, It’s interesting that your family tends to be made up of people who live well into old age. That’s a good thing, cancer or not! And yes, it’s odd and frustrating that you developed cancer despite your efforts to live a healthy life style. Sometimes cancer just happens. There are no answers or reasons that we can figure out anyway. Thanks for reading and thanks for commenting, Beth.

  4. Excellent post, Nancy! Genealogy is one of my hobbies, and I have only recently begun to list the cause of death in my family tree. Thanks for reminding me to do so more consistently!

    I am BRCA negative — and will be listing that in my tree as well.

    Heart disease is far more common in my family tree than cancer. Weird.

    1. Renn, I admire anyone who delves into genealogy. It takes a lot of time and work doesn’t it? I bet it’s a very interesting hobby. Have you dug up any interesting family secrets of any kind? I’m glad you are BRCA negative, at least that’s something to cross off your list or not add to list on your family tree! Thanks so much for sharing.

  5. Nancy when I was first diagnosed with cancer I went to everyone including contacting family in Europe on my grandmother’s side to see if there was one relative who may have had Breast Cancer as well.. Not a one person apart from me ever had a problem with their breasts.
    My father did have curvature of the spine (scoliosis) as did I in fact mine was so severe after surgery there was the possibility I would never walk again……
    I really believe it is important that we do know our family history
    this is one area we seem to be lacking even as far as learning of potential obstacles that could arise after marriage, not sure if it may change someones mind in reconsidering but putting things out there is vital in todays world of so many health problems.. Great post as always!
    Love Alli

    1. Alli, You raise an interesting issue there about potential obstacles or genetic issues that could arise for certain couples. I’m not sure such things can or even should change minds, but in the future more and more will be known about a person’s genetic makeup that’s for sure. I’m sorry you were the one in your family to end up with breast cancer. I’m glad your spine problems improved though. Thanks so much for sharing.

  6. How wonderful that someone loves and trusts you enough to share a very private part of their life with you. Whenever someone shares a “secret” with me I ask them if I can share it if I feel I need to and then respect their decision. There are some stories that belong to the person who told it and not my story to tell. There are some stories I will take to my grave, because it serves no purpose for me to tell their story. Some people who have shared things with me are now dead, but I would feel disloyal to them if I did. I guess it is a generational thing, as one in the “older generation” in my family I was raised to keep confidences. this was a matter of character.

    1. Betty, I have a couple of those stories I will never share too. Some stories are not and will never be ours to tell. You make a great point there. It makes me curious about just how many secrets you’ve been told! Thanks for commenting.

  7. Until I was taking care of my Dad, I was working on my family history. Although I found some amazing long lived people, I also found a number of people who died late middle aged, causes no longer known. However, starting with my grandparents’ generation, there has been a lot of cancer, including breast cancer, on both sides. In fact, I am the third generation in a row to get breast cancer (maternal grandmother, mother, then me). I think when I was tested for the BRCA genes, there were cousins on both sides holding their breath. Incidently, my BRCA test was negative. 3 days before my mastectomy, I got a call from a cousin who had just been diagnosed.
    Something I have wondered about. On the maternal side, every woman who got breast cancer has also been hypothyroid, but we a have a few people in the family who are hypothyroid who have not gotten breast cancer (yet?). I have wondered if there is a connection there. I mentioned it once to my oncologist, and apparently I am not the first to wonder, but he said they haven’t ever proved it.

    1. Elizabeth, I’m sorry there’s been so much cancer in your family. I don’t know the answer to your question regarding the hypothyroid connection. Much of this is still such a mystery isn’t it? Thanks for reading and commenting.

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