Tag Archives: prophylactic

Angelina Jolie Pitt: Diary of a Surgery

Once again, the HBOC community is buzzing. If you haven’t already seen, Angelina Jolie Pitt has published another NY Times Op-Ed. This time about her choice and reasons for undergoing a bilateral salpingo-oophorectomy (removal of fallopian tubes and ovaries). She explains that she has been planning to have this procedure for some time, but recent test results pushed her to go through with it to reduce her risk.

She is careful to point out that this choice is her own and right for her after carefully considering options, but may not be for others. Surgery is not the only option.

I did not do this solely because I carry the BRCA1 gene mutation, and I want other women to hear this. A positive BRCA test does not mean a leap to surgery. I have spoken to many doctors, surgeons and naturopaths. There are other options. Some women take birth control pills or rely on alternative medicines combined with frequent checks. There is more than one way to deal with any health issue. The most important thing is to learn about the options and choose what is right for you personally.

I am again so thankful that she chose to share with the world her genetic status and decisions related to her health. She is bringing global awareness to hereditary breast and ovarian cancer, what many organizations have been striving to do for years. Also empowering women and families facing hereditary cancer to discuss and seek out options available to them.

As I read and react to her piece, I think of my own family history and my health. I lost my mother to ovarian cancer a little over a year ago (29 year old sister to breast, great grandmother to ovarian, and have an aunt undergoing treatment for colorectal). We do not carry any of the known genetic mutations that increase risk of cancer (we are uninformed negative; read old post on the topic), however, my doctors and genetic counselor are convinced something is there, just hasn’t yet been identified. I am managing my healthcare assuming same. In just a few days I will be meeting with my oncologist for the regular bi-annual appointment, which will include the same blood test Jolie Pitt mentions as well as an ultrasound. I know that just like her, the moment those results are abnormal, my surgery will be scheduled. I have also done lots of research and considered other options, but already know this surgery is the right answer for me personally. It will greatly reduce the risk of ovarian cancer, just as the prophylactic mastectomy does for breast cancer. When is the question. I dread the aftermath, which includes surgical menopause, and have thus far been putting it off. Cross your fingers for me.

For more information about genetic mutations, hereditary breast and ovarian cancer syndrome, screening and prevention options, local support group finder, and much more, visit the FORCE: Facing Our Risk of Cancer Empowered website. Talk to your doctor about your family history and whether genetic testing is right for you. To find a genetic counselor in your area, check the National Society of Genetic Counselors website.

Nipple tattoos

WARNING: NSFW / graphic content below.

I recently attended a local FORCE support group meeting. As always, it was fantastic! Our group meets quarterly, varies in size from five to 20, in age from 20 to 60ish, and is comprised of mostly previvors (in various stages: just found mutation to done with surgeries), but also women currently undergoing treatment, as well as survivors. There’s something for everyone facing hereditary breast and ovarian cancer to relate to. I highly recommend you find a group near you and attend at least one meeting. You may find that it’s not for you, but it’s worth a try. Find a FORCE group near you by visiting the local support page. Other organizations also have in-person support group meetings, so check with your doctor or do some googling.

Sometimes we have guest speakers come to share their research, work, products, or information relevant to our community. Our most recent guest was tattoo artist Amy Black of Amy Black Tattoos and Pink Ink Fund. Since 2011 Amy has been specializing in nipple and areola repigmentation as part of the breast reconstruction process for patients post-mastectomy due to breast cancer or as a prophylactic measure. Her 3D nipple tattoos look like the real thing! See for yourself below. Pink Ink FundAmy also founded the Pink Ink Fund shortly after beginning nipple and areola tattooing in response to seeing clients concerned about costs and having no health insurance. Amy’s work both in restorative tattooing and supporting the community is amazing! I plan on paying her a visit once I am done with my reconstruction. In addition to 3D nips, she also does touch ups, repigmentation, and artistic designs.

Here are some examples of her work:

1 5 4 6 3 2

Amy is located in Richmond, VA. If you are interested in contacting Amy, click here.

Are my breasts uneven?

WARNING: NSFW / graphic content below.

Two months after my most recent surgery I now have the same volume in my tissue expander as I do in my implant. We added 50ccs to the expander, for a total of 450ccs. Even though they are the same, they are uneven. I am at the perfect point to show the difference between the look of expanders versus that of implants.

Are my breasts uneven?The tissue expanders are hard, sit high up on the chest wall, and have more projection. Implants are soft, pliable, and more natural. Women who have been through the process and had their exchange surgery often say they are disappointed with size. In a 1-to-1 volume swap, the differences between these two types of devices are to blame.

Here I am as of today: 450cc tissue expander and 450cc implant (Mentor, round, smooth, high profile, silicone). Can you tell which side is which? The one with the lighter areola is the expander. From the front, they don’t look that much different, but from the side or top you can see that the expander is narrower and sticks out further than the implant.

Implant vs expander

When I was going through the expansion process after my prophylactic mastectomy, I reached my happy point at 400ccs. Having read and heard that women are often disappointed with their size post-exchange, I gave myself a cushion and declared that I wanted 450cc implants. That’s what I ultimately got (took a while to get there, but I’m there) and I’m glad that I decided to do a little extra. I am very happy with the implant size.

My plastic surgeon overfills by 100ccs, so I have two more expansions to do. Then I wait a couple of months for my exchange surgery on September 11. This is going to be a weird summer with high temperatures, skimpy tops, and two different size boobs. Oh well. I already spent six months with a single boob, so how bad could this be, right? 😀

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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Race for the Cure

Team FORCE

On October 12, 2013 I will be participating in the a local Race for the Cure event. I have joined Team FORCE and will be walking (nope, not racing) in memory and support of our loved ones who have battled breast cancer AND to help raise hereditary breast and ovarian cancer awareness. I am stoked to be participating in this event and hopefully meet more women like me right in my own back yard!

As most of you already know, FORCE: Facing Our Risk of Cancer Empowered (www.FacingOurRisk.org), is the only national non-profit dedicated to improving the lives of individuals and families affected by hereditary breast and ovarian cancer. People like me.

We are going to have a ton of fun at this event. Teal and pink paraphernalia WILL be involved. I got some teal knee high socks and a pink afro wig. Pics to come … I promise. Our team is already at 28 participants and we have only been at it for a little over a week! We currently have seven corporate sponsors with more on the way!

Origami OwlOne of our sponsors is my friend who is an Origami Owl Independent Designer. She will be donating 20% of sales (pre tax and S&H) to FORCE! How OWLsome is that? HOO is going to help us out and order an Origami Owl locket? There are four pre-designed breast cancer related lockets (see below) or you can create your own, as I did. Mine arrived on Friday and it is so awesome! I ordered a locket with five charms (pink heart with wings for my sister who died from BC, teal ribbon for my mom undergoing treatment for OC, LOVE for the rest of my family, girl cat for my two furbabies, and a G). I also ordered a charm for another necklace. Aren’t they really cute?!? If you are interested in supporting FORCE and getting some great jewelry, visit our designer’s website and make sure to select Team FORCE Fundraiser at checkout: http://MartineNuera.OrigamiOwl.com.

Pre-designed lockets

Origami Owl Team FORCE

Nipple delay

Wondering what a nipple delay is? I was too! I hadn’t heard of this procedure until Angelina Jolie announced to the world that she underwent a prophylactic double mastectomy and this procedure was part of the process.

Since that announcement, many different articles and opinions have been published. A lot of them positive, but a few negative. That’s another post for another day. A few pieces did provide more information on the nipple delay procedure.

Breast Reconstruction Guidebook Figure 1.1What is nipple delay?

During the nipple delay procedure, the surgeon makes an incision in the skin and severs the breast tissue and blood vessels directly beneath the nipple (it remains attached to the surrounding skin). Due to this, the nipple is no longer dependent upon the blood supply directly beneath it and becomes accustomed to getting its blood supply through the skin. According to the Pink Lotus Breast Center blog, it actually recruits additional blood flow not previously established.

This is an uncommon procedure. If it is elected, it is performed some time before the mastectomy; two weeks for Angelina Jolie.

Why have a nipple delay?

Surgical nipple delay is used to decrease likelihood of nipple necrosis, which can occur because of loss of blood supply and can lead to nipple loss, following a nipple-sparing mastectomy.

Breast skin is fragile after mastectomy. If it’s exceptionally thin after the breast tissue is cut away or is handled too roughly, it may die. The same result may occur if the breast surgeon severs too many blood vessels that feed the skin or uses eletrocautery too aggressively and burns the inside of the skin, which may then blister and die.
– Steligo, Kathy. Breast Reconstruction Guidebook: Issues and Answers from Research to Recovery. Maryland: The Johns Hopkins University Press, 2012. Print, third edition.

I was not informed of this option prior to my own nipple-sparing mastectomy. My compromised blood flow resulted in necrosis on my left breast and I lost a nipple. If you are interested in reading about my bout with necrosis (including photos) and the hyperbaric treatment I underwent in an effort to thwart it, please read Tissue necrosis.

Related articles:

Source of Figure 1.1: Steligo, Kathy. Breast Reconstruction Guidebook: Issues and Answers from Research to Recovery. Maryland: The Johns Hopkins University Press, 2012. Print, third edition.

They’re back – second expansion

WARNING: NSFW / graphic content below.

Another expansion done! We added 75ccs to each expander, for a total of 225ccs/side (pic below). I am now just a tad over my size before the prophylactic bilateral mastectomy in January.

I decided to speed things up a little bit – rather than doing 50ccs per expansion, we bumped it up to 75ccs. So far, so good, but it has only been a few hours. The worse of the pain the first time hit me when I woke up on the day after the fill. I felt like I was back in the recliner the first week post-op. I popped an ibuprofen, did some stretching, and moved on with my day. The pressure eased as days passed and I was back to “normal” within a week. Well, here we go again. I imagine it will get worse with each fill, but we shall see.

Breast Reconstruction Guidebook Figure 7.1For a recap of why/how the expansion process works, see They’re growing or check out the video below, which was shared by fellow PBM-er Trisha on her blog I’m getting my boobs chopped off. By the way, if you haven’t noticed, I list a number of blogs on the right side of the page under Relevant Sites & Blogs. Check them out! Most of those ladies has also undergone a mastectomy; some proactively and some after a breast cancer diagnosis.

fills-2013_4_12

100 + 50 + 75 = 225ccs

Source of Figure 7.1: Steligo, Kathy. Breast Reconstruction Guidebook: Issues and Answers from Research to Recovery. Maryland: The Johns Hopkins University Press, 2012. Print, third edition.