Tag Archives: HBOC

For those of you just joining us …

HELLOI’d like to take a minute to say welcome to new visitors and subscribers! Thanks for stopping by and checking out my blog. (I know you’re really here for the topless pics šŸ˜€ – see: My Photos)

I was recently contacted by a reporter who is writing a story about BRCA and hereditary breast and ovarian cancer (HBOC). I was more than happy to share my story, feedback, and reaction to Angelina Jolie’s New York Times op-ed. I thought adding that here is a great way to give the new readers a summary of my story, so here goes …

Recap

I’m 32, married, no kids (more: About Me). Neither I nor any of my family members carry any of the known BRCA mutations; however breast and ovarian cancer are prevalent in our family. My sister was 28 when she was diagnosed with breast cancer and died a year later. My other sister has a breast biopsy scheduled for next week. My mother is currently undergoing treatment for ovarian cancer.

I said NOPE to Breast CancerEven though I am BRCA mutation negative, I have an increased risk of developing both cancers based on my family history and was faced with the same decision regarding my breast health: choose surveillance, chemoprevention, or surgery. For the past 10 years I chose bi-annual screenings via mammograms, ultrasounds, and a few MRIs. I made a different decision and started planning for a prophylactic bilateral mastectomy when screenings discovered some issuesĀ (see: But why?) in March and then June of last year. I underwent the mastectomy in January 2013 and am currently going through the breast reconstruction process, which will end with the second surgery (see: We’re getting there) in September. I have consulted with my doctors about having my ovaries removed and will most likely be seriously considering an oophorectomy in about five years.

When I was preparing for my mastectomy, I spent many hours online looking for first-person accounts of the process and following recovery. I wanted to know every little detail related to the options and decisions I had to make: from which doctors to choose, to what type of reconstruction is available, to how to handle insurance coverage complications. I didn’t find many back then, so I started my blog, sharing my story and photos.Ā I write my blog to give women facing HBOC insight into the experience of a prophylactic mastectomy if they choose to undergo one.

The “Jolie mastectomy”

I was immediately very excited when I read Angelina Jolie’s New York Times op-ed. I could relate to her story, as I had undergone my mastectomy just weeks before she had hers. More importantly, her name is known by millions of people around the world and now her story is too. She accomplished with one op-ed what many organizations have been striving to do for years – bring global awareness to BRCA and HBOC.

The essay described her very personal journey and reasons for making the decision she did. I echo her feeling that choosing to have a mastectomy was not easy, but I have no regrets. Although the decision to have surgery was right for me, Jolie, and countless other women, it is not the right decision for every woman and one that shouldn’t be taken lightly or made without research, consulting with experts/doctors, considering alternative options (screening, chemoprevention, holistic approaches, lifestyle changes), and understanding the consequences. I think it’s important to note that Jolie’s experience is unique. She was fortunate enough to have a relatively complication-free recovery, but there are many women who experience severe complications following their mastectomy.

After her op-ed came the multitude of reactions, commentary, articles, blog posts. Many expressed their support of her decision, but others condemned her. Having made the same decision, it was difficult to not take it all personally. What they were saying about her and the choice she made, they were essentially saying about any woman that made the same decision. I have (thankfully) had support and encouragement from those around me.

Then came the pieces referring to BRCA as the ā€œAngie geneā€ or the procedure as the ā€œJolie mastectomy.ā€ I do agree with the post I recently reblogged (see: Semantics) – in a way yes, this trivializes other women, their experiences, their struggles. Women (and men) all over the world deal with the realities of carrying a BRCA mutation every day. The decisions, uncertainty, major life changes, and disruption are a huge part of their lives. For some, not a day goes by that BRCA and cancer aren’t on their mind. Most have watched a loved one deal with cancer and worse. Majority don’t have a famous name or a famous face. Some publicly share their stories via articles, blogs, support groups, and other venues. Jolie hasn’t done anything extraordinary. The “Angie gene?” She’s no pioneer. I have nothing against her and reiterate that I’m ecstatic that she decided to share her story, but she made the same decision thousands of women have made before her and will make after her. Hearing someone say ā€œoh, you had the Jolie mastectomyā€ makes me cringe and smile at the same time. While I’m peeved by the categorization and potential assumption that I chose this option because she did, I understand that this is the only point of reference some people have and welcome the opportunity to talk about HBOC and BRCA.

3/7/14 update:Ā A few things have changed since I wrote this post in June 2013: mom’s treatment was not effective (or rather TOO effective) and she died in November, my sister’s biopsy results were clear, but she is now prepping for an oophorectomy, my September surgery was NOT my last one,

Angelina Jolie: I decided to be proactive

AngelinaJolieThe HBOC community is buzzing today. I’m sure you’ve already heard the news: Angelina Jolie underwent a prophylactic bilateral mastectomy in February ’13. She also revealed that sheĀ carries a mutated BRCA1 gene inĀ anĀ op-ed piece she wrote for the New York Times.

I wanted to write this to tell other women that the decision to have a mastectomy was not easy. But it is one I am very happy that I made.

For any woman reading this, I hope it helps you to know you have options. I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices. – Angelina Jolie

I’m very thankful and excited that she has decided to share her story. Along with Sharon Osbourne, Allyn Rose, Giuliana Rancic, Christina Applegate, Sheryl Crow, and other women in the limelight, she is using her platform to educate and bring awareness to hereditary breast and ovarian cancer. The story was the main feature on the CNN.com website the day the op-ed piece was published!

Just like me, Angelina Jolie had a nipple-sparing double mastectomy and chose the expander/implant route for breast reconstruction. She first had a nipple delay procedure, which is an extra step done two weeks prior to the mastectomy (see: Nipple delay). SheĀ had an inframammary fold incision, allograft, and a whopping six (!!!) drains post-op. The Pink Lotus Breast Center, where Angelina Jolie had her PMB, has posted more details of her journey. Read their great blog post.

Related articles:

World Ovarian Cancer Day

May 8, 2013World Ovarian Cancer Day: today is the first official World Ovarian Cancer Day.

Did you know that ovarian cancer has the lowest survival rate of gynecologic cancers? Almost a quarter million women are diagnosed each year and it is responsible for 140,000 deaths.

It is important to know the symptoms, which are often misdiagnosed.Ā Do you know what they are? From the World Ovarian Cancer Day website:

  • Increased abdominal size / persistent bloating (not bloating that comes and goes)
  • Difficulty eating/feeling full quickly
  • Abdominal or pelvic pain
  • Needing to pass urine more urgently or more frequently

Early diagnosis greatly increases a woman’s chance of survival, however, women are usually diagnosed at a late stage as often the symptoms are attributed to menopause or digestive issues. This is all so familiar to me.

My mother’s story

Those of you who have been following my blog for a while already know that my mother is currently undergoing chemotherapy treatment for ovarian cancer. She was diagnosed less than a year ago, in June ’12.

Just like described above, she thought her discomfort and swollen belly were related to digestive issues. She was experiencing abdominal pain on her left side and frequently had to use the bathroom. A colonoscopy was scheduled to investigate what in her GI tract was causing this problem. The doctor was unable to complete the procedure – in the five months since her last abdominal/vaginal ultrasound, a tumor developed in her left ovary and grew so large (the size of a balled-up fist) that it restricted the large intestine.

The initial surgery removed a few outlying lumps, but majority of the mass was left intact.Ā As of today, she completed six chemo treatments in Fall ’12 and five of six treatments in Spring ’13. Her doctors are optimistic and believe that her prognosis is good.

I’m scared. Our small family isĀ devastated.Ā My mother is weak and in pain. My father is struggling to support her physically, mentally, and emotionally. My sister (and her son) moved in with my parents to help however she can. I am helplessly watching and trying to support them all from thousands of miles away. I have hope that she will beat those awful odds that are against her.

Ladies, please talk to your doctor. Start those ultrasounds if you aren’t already doing them, especially if breast and/or ovarian cancer are prevalent in your family.