I’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 …
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.
Even 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,
You can be a heroine, you can be a powerful villain, but you are not immune. Ladies, do your self-exams! I ❤ this ad campaign created for Mozambique Fashion Week.
Speaking of Mozambique, do you have any gently used-bras you can donate? Free the Girls!
Nobody’s Immune to Breast Cancer. When we talk about breast cancer, there’s no women or superwomen. Everybody has to do the self-examination monthly. Fight with us against this enemy and, when in doubt, talk with your doctor. – Associação da Luta Contra o Cancer (ALCC)
WARNING: NSFW / graphic content below.
Another fill behind me. We took it back down a notch from 75 and added 50ccs to each expander, for a total of 350ccs/side. I’m not sure that you can see much of the difference in the photo, whic is at the bottom of this post.
I must say that I feel better after this fill than I did after the previous three. Typically I wake up on Saturday and it takes me a while to get going. This morning I didn’t feel much pain at all – no ibuprofen needed. I went food shopping and cleaned the whole house. I hope I don’t regret this tomorrow! Fingers crossed that this continues for the next four fills.
To celebrate my over-the-hump expansion (four down, four to go), I present to you: t-rex. In a previous post (see: Shower time) I joked that I had t-rex arms because of my limited range of motion right after the mastectomy. I could barely scratch my head (or butt) for a few days. I got this shirt shortly after. Enjoy!
It has been one month since my prophylactic nipple-sparing bilateral mastectomy. How am I doing? Here’s an update:
- I am now driving and no longer need a chauffeur.
- Sneezing still hurts.
- Got clearance to resume aerobic exercise, but no running or jumping.
- Planning on going back to work in less than two weeks. Eek!
- I am not a fan of these expanders. They are hard as rocks.
- Still no expansions/fills. We are waiting for the necrotic area to heal. The large scab is slowly lifting at the edges. I trim it so it doesn’t get caught on clothes.
- Had the 14th and last hyperbaric treatment today. Not sure how much of the healing can be attributed to the treatments, though. The wound has definitely gotten better, not worse, so it didn’t hurt. My breast surgeon believes that it saved Dusky!
- Some bruising has developed on my right side, right over the fill port, so I stopped massaging the skin and expanders. Still using the cocoa butter oil with vitamin E.
- Making progress in getting back full range of motion. I am happy to report a small victory – I can now bring my arms all the way to the floor during the floor/towel exercise at 13:10 in this post-op exercise video. Big accomplishment!
- Haven’t gotten any bills yet, but I know they’ll be pouring in soon.
Overall my recovery has been going great! The complications I’ve had are relatively minor and I am happy that it has not been worse.
Check out this awesome video from Casey Eischen, BS, CSCS, CPT, CES, Health/Fitness Expert and Nutrition Coach, providing levels 1 & 2 of a great exercise program for women who have undergone a prophylactic bilateral mastectomy. More to come!
Exercises to Recovery from Phophylactic Mastectomy/Reconstruction
2/1: Check out a more recent post about exercise and nutrition: Foobie Fitness
The nipples … I decided to keep them.
I met with Dr. K to talk about a few things I wanted to revisit before we sealed the deal. One of them being: whether or not my mastectomy will be nipple-sparing (see Nipples, pecs, bras, OH MY!). Some of the things we talked about:
- How much breast tissue (if any) will be left behind? A small disk of breast tissue remains under the nipple to prevent inversion.
- What are the chances of breast cancer diagnosis? In the case of a prophylactic mastectomy (especially for a BRCA1/2-mutation-negative patient), the risk of developing breast cancer is still very low (<1%; see this summary table from the related article mentioned below). A long-term Georgetown study (related article #2 below) concludes that nipple-sparing mastectomy can be safe in properly selected patients.
- What type of screening is done long-term? Screening is still required after any type of mastectomy via self and clinical exams. Mammography/ultrasounds/MRIs are generally not needed. However, screening MRIs are required when breast implants are used for reconstruction.
- What are the chances of necrosis? From the nipple-sparing mastectomies my breast surgeon has performed, no nipples have been lost. He will make the incision laterally from the edge of the areola, versus circumareolar (tracing around it and then out). This will make the procedure technically a bit more difficult, due to a smaller access hole to the cavity, but will reduce the risk of necrosis. The article mentioned below also provides some data related to necrosis of the nipple-areola complex. 2/9: The incision that was actually made was a curved/smiley-face line about two inches below my nipple.
- Will I have any feeling left? This is unlikely. Nipple(s) can become erect after this type of procedure, but the experience will not be the same as pre-mastectomy, both in cause and sensation.
- So will I have permanent headlights? This is a possibility. A few of the ladies I’ve spoken to have expressed that this is true for them after a nipple-sparing procedure. As you can imagine, having constantly-erect nipples can make things awkward, so definitely something I hope I don’t have to deal with. However, in discussing with my PS, I learned that as with other possible unsatisfactory results, it can be addressed in a few different ways. Worst case scenario: another procedure to remove the nipples and areolae.
I’m confident that Dr. K is technically capable of performing this type of procedure and will do a great job. I am aware of the potential complications (not all listed here) – we’ll cross that bridge if we get to it.
Whew, that was the last thing to mull over, last detail to plan, last thing on my list that’s up to me (well, this list). Now the breast surgeon’s office confirms the insurance pre-authorization and I sign the consent forms. One pre-op appointment left with my plastic surgeon.
- Oncologic Safety of Skin-Sparing and Nipple-Sparing Mastectomy: A Discussion and Review of Literature (hindawi.com)
- Nipple-sparing mastectomy for prophylactic and therapeutic indications (ncbi.nlm.nih.gov)
- Nipple-sparing mastectomy for breast cancer and risk-reducing surgery: the Memorial Sloan-Kettering Cancer Center experience (ncbi.nlm.nih.gov)
The first item on my list of Resources is: Find a SUPPORT GROUP. I think this is critical to keeping sane, among many other things. I have had the opportunity to participate in all three kinds – traditional, online, and communication with former patients.
A huge thank you to all of the Wonder Women out there that take time to offer their stories, experiences, photos, and support. It is just absolutely invaluable!!!
As I prepare for my mastectomy in January, I spend a lot of time thinking about it all. It has completely consumed me and can be overwhelming at times. If I have a question or just want to vent or want to see some pictures, I just pop on FaceBook or into the FORCE message board and do it. It’s so easy and convenient. I don’t feel like I’m bugging someone when I call them just as they’re putting their kids to bed.
The ladies I came across truly are my heroes! I mean it. In one way or another, they have all been touched by breast cancer. Whether they are like me, considering (or have already gone through) a prophylactic mastectomy, have watched a loved one deal with the disease, or those that have “been there, done that.” Unless you have had the unfortunate chance to be in any of those shoes, you can’t fully understand how the experience affects every single facet of your life. It is not PINK and fluffy … it is completely devastating. Yet, these women continue to fight and move forward with a positive approach and unwavering determination. Thank you Wonder Women! Keep strong.
Random breast facts by way of good ol’ Imgur. You’re welcome. 🙂