While we associate breast cancer with pink and ribbons, it is far from pretty. It’s more like a Haunted House. Some of my friends and family members have been unexpectedly shoved all the way into the darkest Haunted House you can imagine. And even with support, the hallways and rooms are very lonely, grim and scary. It’s a nightmare that’s incredibly emotional and physically taxing on the body and mind. With having the knowledge that I was BRCA2+ carrying a risk of 60-80% chance of ovarian, breast, melanoma and pancreatic cancer I only had to stand in the foyer of that Haunted House and was given the chance to not go any further. My situation was not if but when. Once I was diagnosed with Melanoma, I then made the decision to be have  prophylactic surgeries: a full hysterectomy, bilateral mastectomy and DIEP Flap breast reconstruction (with multiple revisions). In all, I’ve had 8 surgeries in the past 24 months with the last one being 4 weeks ago. It has not been an easy journey. I have experienced setbacks, but I have absolutely no regrets. I have an amazing medical team who has taken me apart and put me back together again! I also could not have done this without my incredible support team who has helped me through the good, bad and ugly. I ultimately knew it was all worth it when I heard my breast surgeon say “you now only have a 2-5% risk of breast and ovarian cancer.” I had the chance at prophylactic surgeries, but many are not given that choice. I tell everyone these personal details not to get sympathy or accolades, but to urge you to get tested for BRCA and other heredity cancers if there is a history of cancer in your family. For reliable testing, visit a genetic counselor or order an at-home test at Color.com. It’s a simple saliva test that could prevent you from having to unwillingly navigate the gruesome halls of a Haunted House far far away from the world of pink ribbons. My dad was my carrier and he gave me this amazing knowledge before he passed away and now I am making it my mission to encourage others to get tested and to take charge. Fight cancer before it fights you! Be vigilant! There are many resources and options out there to help you find the best path for you.

-J. Gibbons

Will My Insurance Company Pay for a Mastectomy to Reduce My Risk of Breast Cancer?

Q: Hello. I’m having a mastectomy of left breast and was wondering if you know where I might find a mastectomy fitter here in North Carolina. If not, do you have a suggestion of where I can buy the right bra for me that fits my new body well with only one breast?

Thank you.

A: Hi and thanks for your inquiry we would be happy to help.

After some research it seems as though there is a Nordstrom in Charlotte, North Carolina.

We advise you get a prescription from one of your physicians and they can fit you for a mastectomy bra and an insert. The bocusa.org website has a great list of facilities with a certified mastectomy fitter on staff.

If you have insurance, they might have a preferred mastectomy bra fitter that they would like you to go to. They will know exactly what you need. Hope that helps! Please let us know if there are any other questions we can answer for you.

–Gail Lanter

When you’re diagnosed with breast cancer, you are given so much information to digest about your diagnosis and treatment it can, at times, be overwhelming. But it’s not over yet. What about the information you need to decide if you’re going to have breast reconstruction after a mastectomy or lumpectomy? Unfortunately, not every woman is given all of their options in order to make this very important decision.

To help change this, the American Society of Plastic Surgeons (ASPS) and The Plastic Surgery Foundation (The PSF) have designated October 16 as the eighth annual BRADay – Breast Reconstruction Awareness Day in hopes to build awareness around breast reconstruction options. According to http://www.breastreconusa.org, less than a quarter (23 percent) of women know all of the breast reconstruction options that are available to them after mastectomy.

“Thanks to the Women’s Health and Cancer Rights Act of 1998 (WHCRA), almost every woman is legally entitled to have breast reconstruction after mastectomy,” said Richard M Kline Jr., MD of The Center for Natural Breast Reconstruction. “Once you are aware of that, you should then understand what your all of your reconstruction options are, including implant based reconstruction, DIEP Flap, GAP Flap, and Profunda Artery

Perforator (PAP) Flap. Each procedure has its advantages and disadvantages so weigh them carefully.”

Once you are given your options for breast reconstruction, you need to decide which one is best for you and you will probably have a ton of questions. Make certain that you are consulting with a board certified plastic surgeon who is willing to answer all of them and share photos of post-operative results. The more informed you are with the answers you receive, the more comfortable you will be with your final decision.

All women who are candidates for breast reconstruction should receive treatment in a safe and timely manner.  Remember that this is your breast cancer journey and you should do what’s right for you. Keep in mind that only 19 percent of women understand that the timing of your treatment for breast cancer and the timing of the decision to undergo reconstruction greatly impacts their options and results.

For more information on Breast Reconstruction Awareness Day, visit breastreconusa.org. 

Q: I was wondering if I would be able to schedule a phone consult?

I was recently diagnosed BRCA1 positive in April 2019. I have been working with a breast surgeon and plastic surgeon in the Midwest and I am interested in a double mastectomy with immediate DIEP reconstruction. After the initial consult with our local plastic surgeon, he thought this would be possible. In addition to that he wanted to do a mastopexy in preparation for nipple sparing mastectomy and DIEP.

We did complete the mastopexy almost four weeks ago. At my last appointment, our plastic surgeon told us that he is not comfortable doing the immediate DIEP reconstruction after the mastectomy. This is due to limited resources and being the only microsurgeon capable of doing this near my hometown. He typically will complete these in two steps. We are interested in looking into a second opinion, as we would like to try and complete both surgeries in one step if possible. We are also wondering what a schedule or timeline to get in for this type of procedure would be. In the consult I would also like to discuss my journey so far, including screening results, and my past recommendations.

A: Sorry you are having to go through this, but congratulations on having a great plastic surgeon. I’ve never met him, but I know he’s good because 1) he suggested / did the preliminary mastopexy, and 2) he is obviously putting your welfare first by referring you for bilateral DIEP. We would be honored and delighted to help you through the next stage of your journey. I will be happy to discuss the details with you by phone as soon as it can be arranged.

–Richard M. Kline, Jr., MD

We’ve been thrilled to help Shana with goody bags for her October Celebration events for the past several years.    We’ve asked Shana to share her “In Her Words” story about how she was inspired to start and continue to host these successful fundraising events.  Be sure to mark your calendar for ZUMBATHON October 12, 2019!

Shana’s Story

I am a daughter. I am a mother. I am a wife. I am a Christian, a pharmacist, cousin, niece, aunt, godmother and friend. I am 42 years old ….and I am also a 10 year Triple Negative BC Survivor.

Never in a million years did I think that I would hear the words “You have breast cancer “. What initially began with swelling and pain under my left arm turned into an appointment scheduled at Hollings by my primary physician.

I still was not overly concerned. My 30 minute appointment turned into an all day appointment. I had an ultrasound and mammogram and was scheduled for a Biopsy of the lump found in my left breast and swollen lymph nodes under my arm. Before I even received the results, I knew that it was going to be breast cancer. I just had a feeling.

I was 32 years old with a 4 year old and 7 year old. I knew what BC was, but I had no idea about the multiple subtypes.  Since it was BC Awareness month, there were many specials on television. I was watching one that was about TNBC and the African American community. They spoke about the high mortality rate, high recurrence rate and the higher incidences in minority women.

When I got the results of my tumor, I prayed that it wasn’t TNBC. Hearing that it was TNBC felt like a death sentence. I then remembered the special taking about clinical trials. I realized that I needed to do all that I could to beat this!

I signed up for a clinical trial and randomized to the study medication. I received the standard of care plus the study medication. I also received 10 additional doses of the study medication after surgery and radiation.

I was diagnosed with Stage 2 TNBC. I had neoadjuvant chemotherapy, a total axillary dissection, a lumpectomy and Radiation.

“Hope and Fear can not dwell in the same place. Invite one to stay” Maya Angelou

My faith and family gave me the strength to press on. I never questioned God, never thought “why me?” My focus was on my children, family and becoming cancer free. I always believed that the final outcome of my treatment would be NED (no evidence of disease), and it was!

My commitment now is to educate and encourage! Along with my church (Folly Road Church of Christ), I have a yearly BC Awareness Event, Knowing Your Girls. It began as a Tickled Pink Reception and  has grown into so much more! We have had Painting for a Cure, Dancing for a Cure and this year a Zumbathon. We have many people in the community that help to make our programs a success, including The Center for Natural Breast Reconstruction and our partnership this year with MUSC Hollings Cancer Center.

For me there is Life before Breast Cancer and Life After Breast Cancer. ~ Shana

“Each place along the way is somewhere you had to be in order to be here. “

When you’re going through something big in your life, there isn’t anything more comforting than talking to someone who has been through it before.

For women who are having breast reconstruction surgery, a doctor is certainly available to answer many of your questions, but it’s also helpful to hear from another patient who has had the same surgery. What should you expect? How should you prepare at home? How will you feel when you wake up after surgery? What clothes are best to wear? When will you feel like yourself?

Meet Shirley. She’s a patient at The Center for Natural Breast Reconstruction who had a double mastectomy, followed by DIEP breast reconstruction surgery. She wanted to have a ‘girl-to-girl talk’ with other patients, so she wrote a 31-page booklet filled with raw, honest tips and advice that could help others. “No offense to the medical team that put together a technically comprehensive document, but boy did they leave out a lot of information that would have been helpful!” she wrote. “The kinds of things that, really, only a patient would know.”

Here is just a sampling of her tips and advice:

It’s a process, not a procedure:After the initial surgery, Shirley reminds patients that they will have one or two more minor procedures for final “sculpting.” “It’s important that you look at your reconstruction as a process, not one procedure and it’s done,” she writes. “Some healing is required between steps, and so there will be months between each step.”

Be vigilant at following instructions: Shirley made sure she followed her doctor’s instructions completely. That means that she ate a high-protein diet, made sure to exercise and took her vitamins. “I wanted to do whatever necessary to make sure everything went smoothly,” she writes. “Getting in shape prior to surgery will set you on a path to stay in shape, which will preserve your new body! Now that I have a flat tummy and perky “girls,” I’m more motivated than ever to stay fit.”

Go shopping before your surgery: It’s not just about retail therapy that will make you feel better. Shirley is advising patients to find specific clothing that will help with recuperation. “I would recommend that you get a very good idea of where your incision line will run and try to find some clothing that will be comfortable and not hit right on it for when you get home,” she writes. “And have large shirts at hand so that your drains will fit under. They need to button up the front, too, because it will be uncomfortable to raise your arms at first.”

Arrange help: “Another thing about showers — you have to dry off with a towel. So, here I was with limited arm movement juggling four drains and trying to dry all of my pieces and parts,” she writes. “I wasn’t supposed to be alone for showers the first couple of days. Dizziness and lightheadedness are common. My husband stayed with me and even helped me towel off, dress me and blow dry my hair. Naps usually followed showers.” If you don’t have a spouse, a trusted family member or friend should be available to help you.

Paint your toes:“Everyone will see your feet,” she writes. “I got so many comments on how pretty my toes looked. For some reason, that was comforting to me.”

Shirley also provides a day-to-day synopsis of her recovery, including her challenges such as sitting up after surgery and her accomplishments. Her booklet is helpful and inspiring to other patients who also may be struggling with finding the “light at the end of the tunnel.”

From one woman to another, Shirley gets you there.

The Center for Natural Breast Reconstruction would love to send Shirley’s book to anyone who like to receive it! Requests can be made via email, Facebook message, website chat, or phone at 843-849-8418.