Hereditary Genetic BRCA2 Breast Cancer Of Mother and Daughter

Did my getting cancer save my mom’s life? She seems to think so. I don’t like to think of it that way, but she does have a point.  My cancer saved my mom's life, even though it almost killed her.

I’ll digress a little here. My mom was diagnosed with breast cancer in 2002. She was 52 years old at the time. No one in her family had ever had breast cancer; she was the first. If you’ve read my article about BRCA testing, you’d know that having no family history of cancer and being diagnosed at an older age (sorry, mom) is normally thought of as a sporadic cancer, not hereditary. No red flags. Or are there? My mom’s family, as well as my dad’s, is of Eastern European/Ashkenazi Jewish descent.

There are five main factors that can suggest a hereditary cancer in a family, and they are:

1. Multiple family members with cancer

2. Early age of onset

3. Multiple cancers in the same individual

4. Occurrence of rare cancers

5. Ashkenazi (Eastern European) Jewish heritage - RED FLAG!!

Doctors Need To Consider Genetic Testing

Did anyone talk to my mom about genetics testing? No. She had no idea there was such a thing. Even though there were some studies that had come out that year (2002) on the topic of BRCA mutations and reducing the risk of breast and ovarian cancers in women with BRCA mutations by performing a bilateral salpingo oopherectomy (BSO), or removal of the ovaries and fallopian tubes.

So, even though it almost killed her to find out I had cancer, my mom thinks her life may have been saved by my diagnosis.

Why? Well, when I was diagnosed – June 25, 2008 (a day I’ll never forget) – I was 37 years old, very young to have breast cancer. The fact that I was young and that my mom had had breast cancer 6 years prior and I had a Jewish/Ashkenazi heritage all raised red flags, so I was sent for genetic counseling.

DNA
DNA

My Test

I did the blood test and waited about 3 weeks for the results. I knew in my gut that it would be positive (hereditary), but when I was told the news by the genetics counselor, I got extremely emotional. Most of the emotions, however, centered around the fact that I have two daughters, who were only 1- and 2-years old at the time and I knew that it meant that they could also be carriers, a 50% chance, actually. Minors aren’t tested, though, so all I can do is be vigilant and make sure they grow up being aware and healthy.

I won’t go into all the details here about what having the BRCA2 mutation means (you can read more about it in my other article, mentioned above), except to say that it put me at an increased risk for developing another primary breast cancer in the future, as well as for developing ovarian cancer.

Once my test results were received, my mom took that information to her oncologist and she went in for genetic counseling and testing. Of course, her results were positive, too, for a BRCA2 mutation (also referred to as the “Jewish panel.")

The Cost of Genetic Testing

I have to say here that genetic testing, for most people, is very expensive at around $3,000-$4,000, and most insurance companies will not pay for it unless there are significant “red flags”. Had my mom been aware of the test in 2002 and requested to get it, the insurance company surely would have said no. Once I was diagnosed, they immediately agreed to pay for the testing.

Moving on...

My mom and I had some serious decisions to make at that point and, ultimately, we both chose to remove every possibility of risk that we could, so we both chose to undergo a bilateral mastectomy and a bilateral salpingo oopherectomy, which is the removal of the ovaries and fallopian tubes.

The latter was a no-brainer for both of us. Ovarian cancer – the cancer that killed Gilda Radner (and many more) – is known as a “silent killer” because often it goes undetected until it is in its later stages and difficult, if not impossible, to treat.

My mom had her oopherectomy right away as I started my chemotherapy course. After chemo, I had the bilateral mastectomy surgery and once I was recovered, my mom was set to have hers.

Click thumbnail to view full-size
Breast MRI - injection for contrast imagesMRI of breast with tumor
Breast MRI - injection for contrast images
Breast MRI - injection for contrast images
MRI of breast with tumor
MRI of breast with tumor

The Breast MRI

Stepping back briefly, my mom had a MRI 6 months prior – after learning of my diagnosis and BRCA2 mutation, her doctor sent her for a “baseline” MRI.  The MRI showed a 3mm mass that the doctor said they’d keep an eye on; they were going to follow up with another MRI in six months.  Well, since she was scheduled for her surgery already, she went for a pre-op MRI.  The mass had grown to 9mm in those 6 months – nothing good grows that fast, said the doctors.  Well, she was about to undergo a bilateral mastectomy, so it’ll come out anyway is what we all thought.

By the time she underwent the surgery it has grown to 1.2 cm and, yes, it was cancerous.  A different “type” of cancer this time, which meant she’d have to go through chemotherapy again.  That’s where she’s at right now.

We Are Survivors

I had my oopherectomy 3 weeks ago and I am in remission, a “survivor.”

My mom will be a two-time survivor.

Wake Up, Insurance Companies!

If my mom had been tested 7 years ago, I would then have been tested and we both would have had the option of risk-reducing surgery which may have prevented me from getting cancer at all and her from getting it again. But, as it went, my getting cancer is what triggered the genetic testing and it may have saved my mom.

Insurance companies don’t want to spend a few thousand dollars for genetic testing unless there are major red flags, yet look at how much money could have been saved in medical costs (at least a couple hundred thousand!) had my mom been tested 7 years ago.  Additionally, and perhaps more importantly, her doctors never even talked to her about the BRCA test – probably because they just considered it a sporadic cancer. She did have one of the five hereditary factors, but apparently that was ignored. Doctors need to be more aware and open to all possibilities with their patients’ care. This should also serve to be a reminder of how we all need to be our own advocates.

October is Breast Cancer Awareness Month. If you do nothing else related to Breast Cancer Awareness this month, at least conduct a self-breast exam. I may not be here today to tell you this had I not felt my lump while showering.

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Comments 13 comments

dusanotes profile image

dusanotes 7 years ago from Windermere, FL

Lily Rose, this was an outstanding article and, I'll bet, torturous for you to even contemplate and write. Thanks for doing so, so that many might get the tests you were unable to get. I agree wholeheartedly, the insurance companies should have paid for some tests to avoid all the very serious consequences you had to go through. I still do not believe the government plan is the answer. Who knows what those dough-heads in Washington will come up with and how their plan will change over the years as they find they don't have the money to fund it. God bless you for your courage. You are an inspiration to all of us. Don White


Lily Rose profile image

Lily Rose 7 years ago from East Coast Author

Thanks, Don. You're right, this one was a difficult one for me to write. Although I've written others about my cancer journey - they were more about getting my story out there for others to hopefully benefit from what I've learned and for me to vent. This one hit home a bit more and I almost didn't write it. Once I got started, though, it just flowed. I think I need to take a break from emotional articles for a bit!

Thanks for being such a great fan, Don!


rmcrayne profile image

rmcrayne 7 years ago from San Antonio Texas

Wow Lily, powerful story. Glad you caught Hub Mob-itis. All the best to you and your mom and your continued good health.


Lily Rose profile image

Lily Rose 7 years ago from East Coast Author

All thanks to you, Rose Mary. This wore me out, though! Thanks for the well-wishes. We're both holding our heads up high and planning already for a mom/daughter getaway once she finishes her treatment to celebrate!


Catherine R profile image

Catherine R 7 years ago from Melbourne, Australia

Goodness this is quite a story. You have been through the mill many times by the sounds of it. At least you have got the full picture now and it will be a different story for your girls. I think the mom/daughter getaway is an excellent idea. Make sure you go somewhere very special. You can tell your mom that there are positive thought being beamed towards her from Australia - as there are to you Lily Rose!


Lily Rose profile image

Lily Rose 7 years ago from East Coast Author

Catherine,

Thanks for the positive thoughts and well wishes. I wish we could afford a trip to Australia! We may just go to New York, but that's somewhere I've wanted to go for a long time, too - never been as an adult.


Dale Mazurek profile image

Dale Mazurek 6 years ago from Canada

As difficult as it may be in most cases writing is the best way to get your point across, not to mention how theurputical it can be.

They say everything happens for a reason and in this case that seems to be true.

You guys sound like fighters so keep up and you win the battle.

Your story is now posted on my blog.

Dale


Lily Rose profile image

Lily Rose 6 years ago from East Coast Author

Thanks for visiting, Dale! I agree - I do believe that everything happens for a reason. In my experience, in most cases you don't always know why, but in the case of my mom and my cancer we kind of know why. Thanks for the support.

I have checked out you blog in the past and will visit again. Thanks for putting my story out there.


Hummingbird5356 profile image

Hummingbird5356 6 years ago

Thanks for writing this hub. I am lucky to have always had good health but there are so many people who know nothing about breast cancer or any kind of cancer. Some people think if they don´t learn anything about a disease then they can protect themself. They are scared. But having regular health checks is the way to ensure that if there is any problem it will be found early enough to treat.

I am glad you got better and that your mother did too. 52 is a very young age.

I will read more of your hubs.


blondepoet profile image

blondepoet 4 years ago from australia

Oh lily I just want to give you a big hug, you are a champion, a wonderful mum, I am so sorry you had to go through this. You are one strong woman and I hope others can look to you for strength. xxx


Lily Rose profile image

Lily Rose 4 years ago from East Coast Author

Thank you Blondepoet. I am happy to report that my mom and I are both cancer free now, both of us having undergone the same surgeries. I am still, after two and a half years, having annoying side effects from the radiation treatment which no doctor yet has been able to figure a remedy for - but it's vital to look on the bright side and count my blessings of which there are many!


wordscribe43 profile image

wordscribe43 4 years ago from Pacific Northwest, USA

Wow... what a mixed blessing, huh? At least you are now armed with this information and your girls will have the information. Your hub has motivated me to get my overdue mammogram.

I'm sorry you're still suffering residual effects from the radiation. I wonder how common that is a few years down the road.

Anyway, wanted to come by to visit and wish you a happy new year!

Take care, Laura


Lily Rose profile image

Lily Rose 4 years ago from East Coast Author

Thanks, Laura, and happy new year to you as well! Yeah, unfortunately for me my problem is not that common - in fact, none of my doctors (radiation oncologist, oncologist, dermatologists, infectious disease) have EVER come across someone who has had my problem. It's just my luck to get saddled with a medical mystery!

Now go and get that mommogram!

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