Tag Archives: BRCA

Just some “fluffing”

WARNING: NSFW / graphic content below.

Well, it has been a month since I posted my last status update, because there really isn’t anything terribly exciting going on. I do have a photo for you to show you some “fluffing” I’ve noticed in my right implant, though.

I saw Dr. M for another follow up visit a couple of days ago and we agreed that the infection is no more. I have been redness-free for over a month, so I seem to be in the clear. My next appointment with him is at the end of March, which will be my pre-op visit, with the surgery to follow on April 10, 2014. TESSADuring that procedure my PS will attempt to replace the implant via a small incision in my armpit, using the TESSA technique (right). If he observes that too much scar tissue has accumulated in that space, he will have to place a tissue expander instead. We won’t know until he gets in there. It’s a log way away, but it’s not too early to start crossing fingers and banking those positive thoughts. Get on it! 🙂

As of today, it has been over three months since my exchange surgery and two months since the infection claimed my left implant (see: Houston we have a problem). The implant on my right does seem to be “fluffling,” meaning there has been a slight change in the perceived shape and size of the implant. What is actually happening is my body is changing around the implant forcing it into a different configuration, thus making it seem like the implant itself is actually changing. It is a gradual redistribution of the volume from top to bottom of the implant. The completion of this process may take from three months to a year. Here is the difference in just one month:  left = November 13; right = December 13.

Fluffing

Calling for bra donations!

Digging up this old post form February for those of you that haven’t seen it.


Free the Girls

Do you have some old, no-longer-needed, gently-used bras? Want to provide job opportunities to women rescued from sex trafficking? Free the Girls!

I just read a moving story on CNN about a US non-profit charity, Free the Girls, that helps former sex slaves earn a living by selling donated bras!

By partnering with safe houses and after-care facilities, we provide an opportunity for women rescued from sex trafficking to earn a living selling second-hand clothing while going to school, getting healthy, and caring for their families. – Free the Girls

17 bras donated

My donation

I just had to share this. I was thinking about having a bra-burning party, because I will never wear any of my bras again, but this is so much better!!! I was excited to get upstairs and look through my stuff! Can you help too? Check out the Free the Girls website for more info, drop-off locations, the shipping address, and more.

Here’s a link to the story on CNN: Bras offer lifeline to rescued slaves.

FUCK YOU, Cancer!

As some of you already know, my mother was diagnosed with ovarian cancer in June ’12 (see an earlier post: mom’s story). She immediately began chemotherapy and had undergone 17 treatments. There were good days and bad days. In the end it didn’t work. Her struggle with this horrible disease and her suffering have ended. She died on November 5, 2013.

I can’t really fully express what I am feeling, but I know many of you understand. Sadness, devastation, fury, frustration, relief, helplessness, resignation, disbelief, emptiness, grief, anger. Right this moment it’s just RAGE. FUCK YOU, Cancer!

Letters to Doctors: The BRCA and HBOC Syndrome Edition

Have you heard of this awesome new book yet? Letters to Doctors: Patients Educating Medical Professionals through Practical True-Life Experiences: The BRCA and Hereditary Breast and Ovarian Cancer Syndrome Edition was written by Dr. Jonathan Herman and Teri Smieja and is a really great book that aims to educate doctors about HBOC.

Among many other things, Teri has been blogging for a few years (Teri’s Blip in the Universe) about her journey after finding out she carries a BRCA1 mutation. Here’s more about Teri as well as this amazing book (reblogged from www.LetterstoDoctors.com).

What is Letters to Doctors all about?

By Teri Smieja

My name is Teri Smieja. I’m a BRCA1 Previvor, BRCA blogger, co-creator of the largest, active BRCA support group on Facebook and the co-author for an epic new book in the BRCA / HBOC realm. Our book, Letters to Doctors: Patients Educating Medical Professionals through Practical True-Life Experiences: The BRCA and Hereditary Breast and Ovarian Cancer Syndrome Edition.

Letters to Doctors went ‘live’ on amazon.com on October 18th and hit #1 in two genres within the genetics and new medical books categories on the same day it was released. Two weeks later, we are maintaining the #1 spot in genetics and hope to do so for many months to come.

Letters to DoctorsLetters to Doctors is unlike any other BRCA book on the market in that the main target is the health care professional. Letters to Doctors has much inside of it to help the patient learn how to better advocate for themselves too, but our main focus is the medical professionals. We plan to change the way things are being done, so that people will no longer needlessly die from breast and ovarian cancer. With the advent of genetic testing, more and more BRCA positive people such as myself are making pre-emptive strikes against cancer. Unfortunately there is much misinformation among those in the medical community and it is our goal to create a paradigm shift in the way doctors treat their high-risk patients.

My co-author, Dr. Jonathan Herman (a practicing ob/gyn in NY) and myself are making no money from this book, as all profits after production costs are going straight to BRCA / HBOC related charities. We are hoping that everyone will purchase two copies; one to keep and one to give to their doctor.

Those in the high-cancer-risk world are erroneously being told by their doctors too often that:

  • You are too young to worry about this.
  • You are too old to worry about this.
  • You can’t get this mutation from your father’s side of the family.
  • Your insurance won’t pay for genetic testing.

Doctors are missing giant red flags in their patient’s intake questionnaires, such as:

  • Family history of ovarian cancer (ovarian cancer is always a red flag).
  • Family history of male breast cancer.
  • Family history of breast, ovarian, colon, pancreatic, melanoma, and other BRCA related cancers.

The dots are just not being connected. Many patients rely on their doctors to be the most informed, but in the BRCA / HBOC world this is just not always the case, and people are DYING because of it.

Dr. Herman and myself believe that our doctors want to do right by us, but are basing their practice on outdated information and often times think that their patients are not emotionally strong enough to handle the implications that can come of BRCA testing. We feel that it is not our doctor’s place to judge whether or not their patients can handle this knowledge. It is not their place to tell us that genetic testing is too expensive (last time I checked, funerals were pretty pricey as well!), and we fill out stacks of paperwork prior to our doctors appointments with the expectation that it will be read, and understood properly.

It is our intention with Letters to Doctors, to help our medical staff understand better, how to do their jobs, and to truly see how important their words are to their patients.

We truly wish to save lives with this book, and know that we can do it. We just need your help in getting the word out there about Letters to Doctors, and our mission.

“If you don’t design your own life plan, chances are you’ll fall into someone else’s plan. And guess what they have planed for you? Not much.”
― Jim Rohn

Pre-op prep

The awesome Casey Eischen, who is not only a fitness and nutrition expert certified in working with women after breast cancer related surgery or treatment, but also had a prophylactic mastectomy herself in November ’12, has recorded another great video. This one is all about pre-op preparation – how to set yourself up for a successful recovery following breast cancer related surgery. Watch this 8.5 minute webisode for some great tips and tricks to prep for surgery!

Also check out my own preparing for surgery checklist.

Team FORCE at the local Race for the Cure

Team FORCE

There we are: Team FORCE at our local Susan G. Komen Race for the Cure. We had a great time, even though the weather was not cooperating. We made a lot of new contacts in our local community, both of the vendor/organization type and the individual type. We met some really great people that may benefit from our support and us from theirs! Looking forward to more events as part of Team FORCE.

A lot of you have already supported us by either walking or contributing to our fundraising efforts, so a huge THANK YOU for that. We appreciate every step and every Dollar. If any of you would still like to help Team FORCE, here are some things you can do:

  1. Spread the word about FORCE: Facing Our Risk of Cancer Empowered FacingOurRisk.org – the only national non-profit dedicated to improving the lives of individuals and families affected by hereditary breast and ovarian cancer. People like me and many of you.
  2. Make a tax-deductible donation to Team FORCE via our team’s FirstGiving page: http://www.firstgiving.com/fundraiser/Vbmichellebraun/2013tidewaterraceforthecure. 100% of your donation goes to FORCE.
  3. Purchase some beautiful Origami Owl jewelry for yourself or as a gift. The Holiday season is just around the corner! 20% of sales go to FORCE. There are four pre-designed breast cancer related lockets (see below) or you can create your own, as I did and a few of my readers too – THANKS, LADIES!!! 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

One month post-exchange

WARNING: NSFW / graphic content below.

It has been a month since my exchange surgery and over eight months since my prophylactic bilateral mastectomy. I went from about 184ccs of breast tissue pre-PBM, to 550ccs of saline in overfilled tissue expanders, to 350ccs of silicone gel in my Mentor round, smooth, high profile implants.

2013_10_5 FrontNot much has changed in the last month. I was hoping that the pocket on righty would close up a bit on the bottom, but that has not happened. This means I will most likely have a revision procedure this year to do that surgically. The new girls look fine in clothing, but I am not 100% happy when looking in the mirror. In addition to pocket revision, I am still planning on addressing the nipple asymmetry by removing the tip of the right nipple. I hope to wrap this all up by the end of this calendar year.

My scars are not pretty, but I already know I develop “two year” hypertrophic scars, so I am not surprised. I just started using Kelocote on the incision spots; hopefully this will help speed up their softening.

In other news, I just returned from a two week Europe vacation visiting Venice and my family; I’m excited to be participating in the local 2013 Race for the Cure on October 12th as part of Team FORCE (Facing Our Risk of Cancer Empowered – www.FacingOurRisk.org); and I was also recently featured in another article in the Fall 2013 edition of a local cancer magazine. Here’s my excerpt (changing names, because I want to continue to keep this blog anonymous):

“Mogatos says she never thought much about cancer until about ten years ago, when her 28-year old sister was diagnosed with breast cancer. In the intervening years, she’s had a great deal of time to think about it: she lost her sister to the disease, her mother was diagnosed with ovarian cancer, and another sister is undergoing breast biopsy.

Mogatos began having alternating ultrasounds and mammograms every six months to monitor her own breast health. She also had the BRCA test, which was negative. Once in a while she’d have an MRI, just to make sure everything was OK. Her doctor explained some women with breast cancer in their families choose to have a mastectomy, so she knew that was an option. But she was only in her early 20s, and “I was going along the lines of if it ain’t broke, don’t fix it,” she says.

In March of 2012, the time came to fix it. Mogatos picks up the story: “An ultrasound spotted some issues. Three separate masses were present. They had developed in the six months since the last mammogram. The oncologist recommended an MRI screening. Waiting for test results was hell, but when they eventually arrived, they were good – no cancer.

“In June, I felt something unusual during one of my monthly self-exams. The lump was in one of the three spots where the ultrasound found issues.” Another ultrasound confirmed that two of the three spots had increased in size and were now palpable. Mogatos had biopsies done, and again endured the terrible wait for results. There were some abnormal cells but no frank cancer. She was told to continue her self-exams and keep regular screening appointments. “The inconsistency of the messages I was getting was very hard psychologically,” she says. “I didn’t want to go through this again, having to wait for test results, feeling anxiety, then being relieved, and then ‘oops, maybe we made a mistake.’ I just couldn’t go through that again.” She began considering preventive mastectomy.

She was referred to Dr. M. “When I met him, we really clicked,” Mogatos says. “He brought up things no other surgeon mentioned. I talked to some of his other patients. I felt he’d be a great partner to get me through it.”

When the time came for surgery, she was ready. “I’d researched, I’d read, and I knew what to expect.” She was too lean for the DIEP procedure, so Dr. M placed tissue expanders, and a recent surgery replaced those with Cohesive Gel implants. “I’m ready to be done with the reconstruction,” she says. “It’s been sometimes painful, sometimes frustrating, but I’m so happy I did it. When I look at the big picture, the possibility of getting breast cancer and not making it through, like my sister, I have no regrets. It’s totally worth it. I never have to think about breast cancer again.”

Done, DONE, D O N E – ninth expansion

WARNING: NSFW / graphic content below.

I am officially finished with the expansions! YES! We added the final 25ccs to each expander, for a total of 550ccs/side. I am so ecstatic to have reached this milestone. I was really hoping to be completely done late Spring/early Summer, but my rebel nipple Dusky and his pal necrosis had other plans. Six months after my prophylactic bilateral mastectomy on January 22, 2013, I am finally done with fills! This is what I’m doing right now:

What’s next?

  • 7/31: follow up to make sure I haven’t decided that I want to go bigger
  • 8/19: pre-op appointment
  • 9/03: the long-awaited exchange surgery!!!

That’s a lot of fills!

2013_7_19 fills

100 + 50 +75 +75 + 50 + 50 + 50 + 50 + 25 + 25 = 550ccs

Eighth expansion

WARNING: NSFW / graphic content below.

I can almost smell it: the end of the expansion process. This was supposed to be my final expansion, however I wimped out and we only added 25ccs to each expander, for a total of 525ccs/side. The goal is 550ccs, so I have another appointment for the final FINAL expansion in one week.

GravityThe reason for halving the volume is pain. The last expansion brought on a lot of pain. Not that I thought it was going to get more pleasant, but it was pretty bad. As usual, the worst of it come early in the morning. I’ve never dreaded getting out of bed so much. As soon as I sat up, gravity would work its magic. Talk about grumpy mornings.

The pressure was intense and I was on ibuprofen for about three days after. It didn’t help that we spent that weekend camping, so I was not sleeping in my own comfy bed. I really thought if someone poked me, a foob would pop. I even had a dream that my cat sat on my chest and the thing just blew up under her. Not like a slow deflation, but a violent explosion! I woke up in a sweat and immediately groped my chest to make sure everything was still there. Whew!

Enjoy the pics. It’s getting crowded down there!

2013_7_12 Fills

100 + 50 +75 +75 + 50 + 50 + 50 + 50 + 25 = 525ccs