A lot has been talked about since Angelina Jolie revealed that she had a double mastectomy with reconstruction. Her decision to do this after testing positive for the BRCA1 (breast cancer) gene mutation has put many things in the public eye. When a celebrity of this magnitude opens up about something so personal and difficult, all manner of persons come out of the woodwork to discuss it.

I’ve read op-ed pieces about her person, business columns about the lab that does the testing and various comments flung from one extreme to the other.  Every time I’ve started a blog post after reading another opinion or thought, I’ve stopped myself because I wanted to let it simmer for a bit before I put my own opinions out there.

I think it has been simmering long enough.

In September of 2011, I was diagnosed with breast cancer. The exact diagnosis was: stage 2b, grade 3, triple negative invasive ductal carcinoma. I was 38 years old.

The lump had been growing all summer long and it sat at the upper front portion of my left breast. A particularly gnarly beast, it was merely a pea’s size in spring of that very year. A matter of just months had it into a rather impressive lump.

When the biopsy came back and showed it’s type of breast cancer (Triple negative) that news was coupled with my family history and, thankfully, I qualified for a grant through Susan G. Komen for the Cure to get my genetic testing done at the University of Texas Southwestern Medical Center in Dallas.

There was no surprise to see that I had the BRCA1 mutation - same as Ms Jolie.

The women in my family all got tested as their insurance covered the test for them because of my existing cancer and BRCA1 mutation positivity. My sister tested positive for BRCA1, as well. Whereas I did all of the surgeries after 4 months of chemotherapy, my sister was able to do the surgeries to prevent the highly-potential onset of the disease.

All of this to say — I get it. I get how Ms Jolie felt. I understand her decision making for this.

What I don’t understand is how people are perceiving it.

As someone who has had first-hand experience, these are my thoughts on the various commentary following her announcement:

1. On Myriad Labs and the costs of genetic testing:

I’m not a fan of Myriad Labs and how they’ve patented the gene thus securing their stake on all of the testing. As a business person, I can understand the desire to protect the work put into discovering it; however, as a human being, I cannot see how they justify it. Jonas Salk was the scientist that created the first polio vaccine and, to the dismay of the business persons of the world, he didn’t patent it. Instead, he released it to the public seeing it as a human need. He gave it to humanity.

I would love it if Myriad released the testing so it could be done with less expense and, thus, be made available to more women. When 40,000 women die from breast cancer every year, I think this is more of a human need.

It may be more complicated than just releasing it but part of me thinks it isn’t.

2. Breast cancer isn’t a blanket disease:

So many people don’t know the in’s and out’s of breast cancer along with the various types of it. I became a student of the disease when I was diagnosed but the “average Joe” sees it as one blanket disease. Breast cancer is breast cancer - to them - so they don’t understand why she’d take such drastic measures especially when they had a grandmother or aunt who had a lumpectomy and went on with her life just fine.

Here’s the deal: there are many forms of breast cancer. Some are estrogen-receptor positive. Some are progesterone positive. Some are inflammatory. There’s Triple Negative. Within these types are stages and grades. It’s a lot to understand and take in.

My particular kind of breast cancer is called Triple Negative and, as I mentioned before, it is particularly gnarly. It grows fast. Real fast. Mine grew one centimeter from my biopsy to my chemo-planning visit with my oncologist. Triple Negative, when confined to the breast, is easier to fight.  Once it spreads, it’s not good. I was merely days from that happening. The concern over the lymph nodes was frightening. Doctors start calculating your mortality. This is not a fun time.

But BRCA1 gene mutations don’t just create breast cancer. BRCA1 gene mutations tend to create triple negative breast cancer.

“Triple-negative breast cancer accounts for approximately 15%-25% of all breast cancer cases. The overall proportion of TNBC is very similar in all age groups. Younger women have a higher rate of basal or BRCA related TNBC while older women have a higher proportion of apocrine, normal-like and rare subtypes including neuroendocrine TNBC.^[2]

Among younger women African American and Hispanic women have a higher risk of TNBC,^[7] with African Americans facing worse prognosis than other ethnic groups.^[8]”

- Wiki

So, knowing this, you can see why there is a sense of urgency when you discover you’re BRCA1 positive.

My sister knew the stats when she tested positive for BRCA1 and (I believe) wisely chose to do what she needed to do to stay sane with the numbers being what they are. I believe Ms Jolie did the same and good for her.

3. “But there’s a 13% chance she won’t get it”

I read this comment a lot. So many were concerned that Ms Jolie, and others like her and my sister, made a drastic decision over something that “wasn’t a guarantee”. Here is how I feel about that:

If someone said: “There’s an 87% chance you’d win the lottery if you buy a ticket”, wouldn’t you buy a lot of tickets? Wouldn’t you feel like your chances were really, really high? Of course you would! Why? Because that IS a high chance. An 87% chance of getting a gnarly breast cancer eating away at you is a very high chance.

When I visited with my surgeons and oncologists, there was no question. I WAS getting the double mastectomy. I knew I was. I distinctly remember telling my breast surgeon “I want the double” and she said “You really don’t have a choice on that. You have to have it.”

For me, it had reached the point of life vs. death. For me it was a no-brainer. My sister saw it that way, too. A mother of 6, she knew this was the way to go. She also elected the full hysterectomy including the ovaries.

I did that, too. My gynecological oncologist took care of all that including the blood lines leading to that area. So, basically I’ve been stripped for parts and that’s okay. Why? Because they’re just parts. They’re not my soul. They’re not who I am. They’re not what makes up my sister. They’re not what makes up Ms. Jolie.

Which leads me to the next point:

4: They’re just boobs.

They’re lumps of fat and ducts that can be replaced and rebuilt. Unless you’ve been living in the jungle since the 1960’s, you know that medical science has had the ability to do cosmetic and reconstructive things for breasts. In 2011, the NUMBER ONE cosmetic procedure done in the United States was breast augmentation. Doctors can make boobs. They have the technology.

So, why wouldn’t she opt to do this? It doesn’t make sense. Why would you want to wait it out - every day - just looking for the day you have the actual lump appear? Why? When you know that they can take the bad ones away and give you a perfectly nice set of new ones… why not?

Why wait until you’ve gotten older and chemotherapy may be what kills you more than the cancer does? I did four months. I was 38 and in otherwise good health and chemotherapy made me feel like I was dying. There were times when I thought: “This is it. It’s going to kill me”

I couldn’t imagine knowing that I have a high chance of having breast cancer and then just waiting it out. Not to mention her family history and the increase of ovarian cancer possibilities that come with having BRCA1. A woman with a first-degree relative (Jolie and her mother; my sister and me) has doubled her chances of getting the disease. I think it was a no-brainer - an obvious decision.

I can guarantee it wasn’t an easy decision - just an obvious one.

Surely she didn’t skip in and out of the surgery. I know that from experience. I read one internet comment that said she just used the BRCA1 result as an excuse for a “boob job”. A breast reconstruction is unbelievably different than a breast augmentation. Believe me.

I’ve had natural childbirth twice and I’d rather do that again versus get my mastectomy done again. It’s not fun. It hurts. A lot. It’s done differently than an augmentation. It’s a dramatic, painful and highly involved surgery. This isn’t just a boob job.

I understand that no one likes to think or believe that such drastic measures can (and are) taken .. but they are and you have to get an understanding of it.

Which leads me to my final point:

I am glad Ms Jolie talked about it. I’m glad she has forced people to talk. Aside from the obvious idiots out there yapping away at her, I think this is a good thing. It is forcing people to talk about breast cancer, genetic testing, options and results. The discussion is alive and well and - as long as people talk - people are learning.

When people learn, they gain knowledge and knowledge is true power. When we know, we don’t fear. When we know, we can make positive decisions. When we know, we can take steps to fight for results.

The trick is, we have to stop getting in the way of ourselves. We have to open our minds to new ideas and be aware of the things we humans are capable of.

40,000 women in the United States will die from breast cancer this year and anything we can do to stop another from being in this number is a good thing.