Tag Archives: Hereditary

One day at a time

It has been almost a month from the day my right implant was taken out. Since then I have had my drain removed, celebrated my 34th birthday, ordered another breast prosthesis, developed a seroma, had a poking stitch pulled out, scheduled my next surgery for April 9, 2015, had my bi-annual ovarian screening ultrasound, and went to a Boobvoyage party for a friend getting ready for her PBM (which is today), among many other things. It was also breast cancer awareness month, which meant lots of local events representing FORCE and supporting our community. It has been a busy month.

Today, just like any day, I am thinking of my mom. But on this day, I am overwhelmed by grief. It is one year since she died.

I am sad she is not here to celebrate the birthdays, offer her support, or be on the other end of the phone or Skype conversation to share even the mundane little things in life. I am sad that my dad lost his best friend and soul mate. I am sad that my sister is probably feeling the same things I am and that my nephew lost his loving, caring, spoiling-him-rotten grandmother. I am sad that my mom is not here to live her life and take part in ours. I am sad that my family has been so deeply affected by cancer and suffered so much loss. I am sad and still hurting.

Each and every day I think about and miss her.

Fuck cancer!

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Ovarian Cancer Awareness Month

They say that Ovarian Cancer whispers. It is a silent killer. The symptoms are often attributed to GI issues (bloating, abdominal pain, difficulty eating, going to the bathroom often), there is no reliable screening method, and it is hard to find in its early curable stages.

My mom experienced these types of symptoms. By the time doctors took a closer look, they discovered ovarian cancer in advanced stages. She lived for a little over a year. Not a day goes by that I don’t think about and miss her.

Ladies, please educate yourselves about the symptoms and risk factors associated with ovarian cancer. Has anyone in your family been diagnosed with ovarian cancer? How about breast cancer under the age of 50? Male breast cancer? Two members on the same side of the family with any of these cancers: breast, ovarian or fallopian, prostate, pancreatic, or melanoma? These signs may point to hereditary cancer. If you suspect the cancer in your family may be hereditary, it is important to consult with a genetics expert. Find one here.

Ovarian Cancer Fact Sheet

FORCE 15: Reasons to Join FORCEs and Attend Our 8th Annual Conference

Have you heard of the Joining FORCEs Conference coming up in June in Philadelphia? Are you planning on going? I will be there! I’m excited to attend some of the scheduled sessions, specifically those related to oophorectomy, surgical menopause, HRT, ovarian cancer screening and prevention, advancements in genetics and testing, and the show-and-tell session!!! Fingers crossed I will be completely done and healed by then, so I’m planning on showing these puppies off! Join me at the conference June 12-14 in Philadelphia.

Thoughts from FORCE

Need a reason to attend this year’s Joining FORCEs Conference? Here are 15 good ones:

  1. It’s the largest annual gathering by and for the hereditary cancer community.  Be a part of this landmark event.
  2. We make the latest science understandable and accessible. Hear experts clearly explain the science of hereditary cancer and make the latest research and medical options understandable and accessible no matter where you are in the HBOC journey.conference1
  3. We cover every aspect of HBOC. View our agenda to see a complete list of the 48 separate lectures, workshops and networking sessions.
  4. Sessions are organized to help you find the information you most need.  Our conference content is aligned into tracks that focus on different groups.  View a list of suggested sessions based on your specific situation.
  5. We bring researchers to you.  You’ll hear the latest scientific findings presented first-hand by world-class experts

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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 😀 – 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 issues (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. 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 “Angie gene” or the procedure as the “Jolie mastectomy.” 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 “oh, you had the Jolie mastectomy” 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: 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 she carries a mutated BRCA1 gene in an 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). She 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.

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