Nina Garcia is the editor of Elle and I know her as a fashion commentator and judge on Project Runway. She recently wrote an essay saying that she needs to miss Fashion Week as she’s about to get a double preventative mastectomy. Nina took a DNA test that reveals she has the mutation in the BRCA gene that increases your chances of developing breast and ovarian cancer. She underwent follow up tests with doctors and has determined that this is the best decision for her health. It’s been such a weight on her mind that she is looking forward to having the procedure and no longer worrying.
I won’t be attending Fashion Week. Instead, I’ll be watching from the sidelines at home, recovering from a preventive double mastectomy.
As an editor, I’m used to expressing myself in words, but now I’m having a difficult time finding the right things to say. I’ve been confronting my emotions and keep asking myself the same few questions. Am I scared? Yes. Am I relieved? Yes. Am I making the right choice? Absolutely…
My battle of the boobs began in 2015. Because of a family history, I decided to get genetic testing to check for mutations to the BRCA genes (BRCA1 and BRCA2), which increase the risk of breast and ovarian cancer. To my surprise, I received an envelope containing the results, stating that I did in fact have a mutation and was at high risk for breast cancer.
This January we did more tests, and after studying the results, my doctors and I decided that I should have a preventive double mastectomy. I was living in a loop of testing, every day waking up thinking: Is today the day I will get cancer? I no longer wanted to have these scary thoughts, and I knew the only way they would stop was to schedule the surgery. The answer was clear.
Surprisingly, the days following my decision were the darkest. It wasn’t until then that I realized how lonely and overwhelming the past few months had been. There were only a few people I spoke with about this. I worried about my kids, how to tell everyone at work, and the prospect of being out of the office during one of the most hectic times of the year. I didn’t know how people would react, and I feared I would look weak.
I realize I’m incredibly privileged to be where I am today. I have options and insurance and access to the best medical care. My heart is heavy for the millions of other women out there who are not as lucky.
Nina wrote that she’s received support from friends and other women who have had this procedure, and that so many people have reached out to her. She’s relieved not only to be getting this done, but also to have opened up about her decision.
I was so happy when 23andMe released the BRCA results and I tested negative. If I tested positive, and if I had lost close family members to this disease, I would opt for this if I could afford it. I do get a mammogram every year, and reading stories like this reminds me how important they are.
Remember when Melissa Etheridge shamed Angelina Jolie, who had lost her aunt and mother to breast cancer and has the BRCA mutation, for getting this done? Melissa thought she was the authority on breast cancer since she’d had it and also hated Angelina. Anyway I hope Nina doesn’t get grief from anyone for this. This was brave of her to both have it done and to open up about it, especially since she didn’t tell many people before this.
This is such an incredibly personal decision, and women in her situation should have everyone’s support. My heart goes out to Nina and her family. She’s so brave for coming forward and being so open about this. She’s an inspiration.
One of my cousins is about to have this procedure as well. She lost her grandmother and a maternal aunt to breast cancer and her other maternal aunt had it and her mom had stage 4 breast cancer (she underwent experimental treatment and is doing okay). She tested positive for the gene.
But, a warning, just because you don’t have the gene does not mean that you won’t get breast cancer. I don’t have the gene and I had breast cancer.
Sending healing vibes to your cousin and continued health to you!
Your second paragraph is so important. We have positive and negative folks in my family. But being negative for the gene means you are still 50% likely to get it, instead of 85%.
There are other factors too. My cousin’s gene is stemming from her mother’s line. Her dad is my uncle but on our side there have been numerous types of cancer: lung, pancreas, multiple myeloma, melanoma, colon in my grandparents and aunts and uncles. Two of us in my generation have had cancer so far, both of us were very young adults. So, there is definitely something genetic, they just haven’t discovered the gene yet. My dad’s family has had cancer as well. His mom had breast cancer, he had a rare form of lymphoma, and a cousin had prostate cancer. There is still so much research to be done.
I wrote below that I had breast cancer last year and was expecting BRCA,but it was negative.They did however find the ATM gene which I said below they are learning that it’s responsible for (early)breast cancer and they are looking into its significance for colon and pancreatic cancers.Please don’t think BRCA is the only gene to cause breast and other cancers.
Love Nina!!! Good luck!!!
My mother and grandmother died from ovarian cancer and as soon as I am done having my second child, I am getting these tests done.
I have a lot of anxiety about it because if I have these genes my doctors recommend an oopherectomy by age 40 or 45 depending on the gene and I don’t know if I am ready to put myself through menopause at that age.
On the other hand, watch someone you love die from those cancers and tell me it’s not an incredibly difficult decision.
I have the gene. I had a mastectomy 12 years ago. Since my mother and most of the females in my family had breast cancer, my doctors felt fairly comfortable in having me wait to have the 2nd surgery to remove my ovaries. I was fine with waiting until menopause. Until my aunt died from ovarian cancer. Okay…I’m nervous but still going to wait. I’m having yearly Pap smears and having my blood checked for CA125. I’ve had CT scans and pelvic/intravaginal MRIs. I’m good. Then last year, her daughter, my cousin, is diagnosed with Fallopian tube cancer. What?! Well, little known fact but researchers have found that BRCA positive people have a 1% chance of developing Fallopian tube cancer. There is no test for it. There is no way to discover it early. I was lucky. They found mine in the earliest stages. But only because I decided I wanted a hysterectomy. I wanted it all gone, including the tubes. I found a terrific doctor who agreed with me. I’m having chemo in a few weeks, but I would urge anyone with this gene to be aware of the newest wrinkle.
I wish Nina all the best.
Wishing you all the best too, The OriginalMia.
Same here!
Thank you, LightPurple and Vava. We got news that it hasn’t spread, which was a huge weight off my heart. I feel blessed. 💜
I have this mutation too and have to have surgery soon, I’m so glad they were able to catch your cancer early! They’ve recently discovered that the vast majority of ovarian cancer begins in the tubes and not on the actual ovaries. A lot of doctors are offering women the choice to only remove their tubes and wait on their ovaries until they’re closer to natural menopause.
Wow, I’m so glad they caught it. Best wishes to you and your family!
All of this is terrifying. After I had my second kid, I asked my midwife about removing some of my ladybits (like my cervix, my uterus) because all they are now is sitting cancer risks now that I’m done with them. She kind of looked at me like I was crazy.
Melissa Etheridge is a mean, ill spirited woman. Her hate for Angie really blinds her. So Brad have you talked to ME about the lousy stupid thing she said about Angie? Oh right Brad NEVER spoke up for his soon to be ex wife. NEVER!!!.
Melissa is a terrible person. You can tell by how she treats her Exes – kicks them to the curb, claims they weren’t really married etc.
Angelina wrote a beautiful piece about why she opted for her surgeries. Don’t forget that her mother Marcheline had ovarian cancer for a long time.
I’m pretty Angelina-hostile, but she made the decision that was right for her and that makes it her right decision. I cannot imagine not being a doctor and thinking that one experience with a condition or disease made you an expert, much less publicly disparaging someone else’s very valid decision.
Forgot to say pray that Nina does well and has a good recovery. Love and prayers to her.
re: your comment on melissa etheridge. Yes I do remember that! Why is she so nasty to people?
Oh my, I cannot even imagine how scary that decision is, but I 100% understand why she chose to go for the double mastectomy. My mom was diagnosed with Stage 1 breast cancer a few years ago (thank God she’s okay now) and she had a mastectomy and reconstruction. She takes a pill every day and will for 5 years total. Even though recovery was not without its challenges, she didn’t need radiation or chemo. She is otherwise healthy and was back at work and is running around busy as ever like nothing has happened. I hope that for Nina. It’s going to suck the first month or so – there will be drains and pain – but she is closing the door on chemo and radiation and the complications that come from it.
To all of you who have had cancer… thanks for sharing your very personal experiences. The more open we are, the better our chances of early detection. My mom has had breast cancer 4 times over almost 24 years with up to 10 cancer free years in between. And she tested negative for both BRCA’s. She has cancer in her lung now but chemo seems to be holding it now. My heart goes out to anyone dealing with this.
My aunt was one of the lucky ones – both her sister and her mom died from breast cancer. She tested positive for BRCA and had very regularly mammograms. They caught her breast cancer early and she became a cancer survivor in her mid30s. A few years ago she had a full hysterectomy to prevent ovarian cancer. Her daughter, my cousin also tested positive for BRCA, she is now 23 and has some huge decisions to make. It’s terrifying to watch people you love go through this
screw people who judge women making these huge terrifying decisions. They have no idea what people are going through
Thank you for sharing your stories ladies! The more we support each other the better off the world is. When I was 22 I had an eblation (burning of the uterus lining) and had my tubes cut because of severe endometriosis plus was at high risk for uterine cancer. My wonderful (male)) doctor was extremely compassionate and supportive and felt at 22 I was too young for a hysterectomy. As a result of the surgery no chance of ever having children. I did this because I take meds that I can’t go without which would cause severe birth defects. I also have epilepsy and bipolar which I felt I wouldn’t be the best parent I could be.The judgement and dirty looks from female hospital nurses because I don’t want children was devastating. I thought I was being responsible I was able to have a complete hysterectomy at 30 and the pain that had returned because of ovarian cysts and endometriosis behind the uterus was gone immediately. Menopause sucks at first but 3 years later I rarely have hot flashes. I don’t take hormones because the mood swings made me crazy.
Godspeed to her.
Blessings to each of you and your loved ones who have dealt with cancer,breast uterine,ovarian,and so many other kinds too.Take care of yourselves and never be afraid to insist on testing even if it means second opinions,etc.
Last year was my time to deal with breast cancer,I awoke one morning after several months of nipple pain,with blood stuck to my t shirt.I was only 42,and was unaware of any breast cancer on my biological mothers side of the family.My nipple had been in searing pain that I thought was due to *changes with my body after 40*It was willful ignorance.The day of the bloody discharge was a huge wake up. I sobbed,and then I went straight to my doctor who felt nothing on physical exam and thought the nipple was perhaps infected with staff,he did set up mammogram,and ultrasound for the next day.Microcalcifications were found,and biopsy was the next step.One week later I was in the surgeons office and he delivered the news,which by then…I Just New,the diagnosis was very good stage 0-but after explaining my lack of family history I said with great conviction that I wanted a double mastectomy.He and my husband,daughter,friends and family were very supportive.It was early cancer on my left side,and after surgery the left nipple was diagnosed as Pagets of the nipple (so painful when it was untreated,like a bee sting 😬Ouch!)The cancer in my breast made its way through the ducts and ONTO the skin of the nipple and areola.It’s often not treated as breast cancer right away,because doctors think it is a skin infection.Pagets is very rare (1%)I went through and am going through reconstruction.Its not so bad,but I’m debating having the implants removed they have been in place since last summer,and while they look okay in clothes,and no bra is great!I am not sure they are meant for me.I was so fortunate to not need chemo or radiation.After genetic counseling I learned that I have a gene called ATM-it’s still being studied,but also shows not just increased breast cancer risk,but maybe colon and pancreatic as well.Always listen to that voice inside,even if it’s scary and fight to be heard by your doctors,I don’t care how young or old you are.Wishing you all peace and health!
hugs Spicecake! what an ordeal..I had not heard of ATM before, will look into it..so scary
Thanks ❤️Lala,very kind of you!
I am a rare case where I do not carry the gene, however I have had breast cancer now three times. And my mother has had it twice !!
My third one has turned out to be the aggressive and most often deadly Inflammatory breast cancer. Most women and a great deal of doctors have never of it.
It is not found on a mammogram and it does not present with a lump.
By the time you are diagnosed, you are already Stage 3 or Stage 4, because of the aggressive nature of this cancer that runs rampant through your lymphatic system.
I wanted to use this post on breast cancer to just educate anyone who may not be aware of IBC.
Thank you Jenny,it may seem empty to say I’m sorry for what you are going through,and that I hope you can fight this and beat this,but that is my hope for you.You are so brave for what you’ve endured and so kind to share your story so others will know.You are in my prayers 💕
Thank you ever so much for your kind words and hope ~
I don’t know if anyone will see this but here’s hoping: If you are BRCA positive start getting your cancer antigen (CA) labs done at least annually. Many insurance companies will either deny prophylactic procedures or make them extremely expensive even with coverage so that patients are forced to not have what could be life saving procedures. Getting CA labs should be covered but if they aren’t the out of pocket amounts for lab work, while still expensive, is far less than a major operation. Which ever doctor is ordering your annual breast imaging should be able to also write these lab orders. If they won’t find a new doctor.
“I was so happy when 23andMe released the BRCA results and I tested negative.”
Oh gosh. DO NOT TRUST 23ANDME ME FOR THIS. 23andMe only tests for a VERY FEW variants (all of them variants commonly found in Ashkenazi populations). Unfortunately, there are MANY other BRCA mutations that 23andMe does not test for. Thus a negative result on 23andMe does NOT mean you are “safe” or definitely do not have a pathogenic BRCA mutation.
This is why genetic counselors HATE 23andMe—it provides a false sense of safety.
If you have a family history of breast or ovarian cancer, please talk with your doctor about getting a test for BRCA mutations from a reputable lab.
Fellow breast cancer survivor here – although I have no family history of it I blame myself. At age 42 I had a total hysterectomy and went on HRT. Stayed on it wayyyyy too long and ended up with breast cancer at age 64. A word of warning to all you women on HRT – please PLEASE get off it as soon as possible. I know it’s hard but you never EVER want to hear these 3 words…’you have cancer’.