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

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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. Amy 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:

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

Are my breasts uneven?

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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.

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.

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

Race for the Cure

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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!

One 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.

Nipple delay

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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.

What 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:

Surgical Delay of the Nipple–Areolar Complex: A Powerful Technique to Maximize Nipple Viability Following Nipple-Sparing Mastectomy (annsurgoncol.org)
Angelina Jolie’s ‘nipple delay’ procedure, explained (NYmag.com)
A patient’s journey: Angelina Jolie (PinkLotusBreastCenter.com)

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

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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 7.1 For 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.

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.

Hyperbaric oxygen therapy

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WARNING: NSFW / graphic content below.

Tissue or skin necrosis is one of the risks associated with a mastectomy (or any surgery), which is typically a result of loss/interruption of blood vessels feeding the tissue. Read more about it in my previous post: Tissue necrosis.

Hyperbaric oxygen therapy, most commonly known to treat decompression sickness related to deep diving, is sometimes used for treatment of wounds or necrosis. I was not familiar with this type of treatment before entering this community and even now, being completely engrossed in it, I don’t see it mentioned often.

In a nutshell

Hyperbaric oxygen therapy (HBOT) involves the breathing of pure oxygen while in a sealed chamber that has been pressurized at 1-1/2 to 3 times normal atmospheric pressure. – American Cancer Society

What that means is: you get into a clear plastic tube that is sealed, the air pressure is raised (while your ears constantly “pop”), pure oxygen is pumped into the tube, and you get to watch two hours of TV while the oxygen works its magic. I renewed my Netflix subscription just for the occasion!

Why do it?

The main benefit to hyperbaric oxygen therapy for wounds is esentially faster healing. Here are some key points from WoldWideWounds.com:

Oxygen used under pressure can assist wound healing
It can be used successfully in wounds such as failing flaps and necrotising soft tissue
HBO therapy provides oxygen needed to stimulate and support wound healing where there may be insufficient supply
It combats clinical infection
It is a relatively safe non-invasive therapy

Does it work?

I had 14 treatments total and can definitely see changes in the necrotic area. I am unsure, however, how much of it can be attributed to the hyperbaric oxygen therapy versus regular rate of healing, diet, exercise, etc. Both my plastic surgeon and the wound care doctor agree that I will still have scarring and “discoloration” of the tissue underneath the necrotic skin, but will not need any skin grafting or other forms of treatment. My breast surgeon thinks that HBOT saved my nipple. So discoloration I can deal with, as long as I can avoid additional surgery and get to keep Dusky, the rebel left nipple!

These are earlier pics of changes in the wound over the first two weeks post-op, pre-HBOT:

This is what Dusky looked like after ten HBO treatments and four weeks post prophylactic bilateral mastectomy:

This is after the scab fell off two months post-op. Unfortunately, I did lose the tip of my nipple. Yup, just the tip. It took another couple of months for the pigment to return.

Resource highlight

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My Destiny

While there are countless resources online available to those who are preparing or have already gone through a mastectomy, there area few that stand out. The My Destiny Foundation is one of my favorites. There is an unbelievable amount of information on this page: from lists of questions to ask potential surgeons, to information about BRCA mutations, to recommended FaceBook support groups, to tips on how to communicate the decisions you make to others, and so much more.

The site is run by two wonderful ladies who have been through it all: Lisa Sousa and Kim Richardson Emery.

My Destiny is an online community designed specifically for women, by women, who are at a high risk of developing breast cancer. We bring women together, provide accredited information and support, increase awareness and provide women financial, social, and emotional support that are undergoing a prophylactic mastectomy to reduce their risk of breast cancer!

Visit MyDestiny-US.com to tap into one of the great online resources for women considering a prophylactic bilateral mastectomy.

Speed bump

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I have been seeing the breast surgeon since the spots showed up on the ultrasound in March. I expected to work with him and the plastic surgeon I chose. Well, that will not be so. During a recent screening appointment he threw a wrench into it. He doesn’t have regular operating privileges at the hospital the plastic surgeon operates in and vice versa. He thought he would, but with his current patient load, there just aren’t enough weeks in a month for him to do whatever has to be done in order for a hospital to grant those privileges to an “outside” surgeon.

That’s just peachy! Now what? Do I pick one of the other two plastic surgeons or do I find another breast surgeon? He suggested that I stick with the plastic surgeon and meet with another breast surgeon – one he highly recommends. So off to another appointment!

I met with Dr. K and discussed most of the specifics of what has been going on with me and where I stand now. He’s available to do the mastectomy on the 22nd, he seems like he knows what he’s doing, he does think that this is a good idea, we got along just fine, and he’s originally from Jersey (good or bad – you decide). I feel like I don’t have much choice at this point, as it doesn’t look like the other surgeon can do it, but I know I don’t have to “settle,” so I’ll think about it and see if I’m good with this arrangement or not.