Don’t be Haunted, Be Proactive!

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&A: Ask the Doctor

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

Breast Reconstruction Awareness Day is October 16: Learn your rights.

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&A: Ask the Doctor

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

Survivor EMPOWERED – Meet Local Breast Cancer Advocate Shana Brown

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. “

 

 

 

 

Previvors: Family History and Breast Cancer Risk

Abby recently found out that she has a family history of breast cancer — she has a cousin and a grandmother who have both been diagnosed at different stages. Abby is 37 years old and doesn’t have breast cancer, but the idea that she might have a higher risk of getting the disease because of her family history concerns her. She has decisions that she has to make about her health and what she needs to do to reduce her risks. Abby is known as a Previvor.

According to FORCE, Facing Our Risk of Cancer Empowered, a Previvor is an individual like Abby who may have a predisposition to cancer but who hasn’t actually had the disease. This includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor.

In 2010, Congress passed the first-ever National Hereditary Breast and Ovarian Cancer (HBOC) Week and National Previvor Day to help raise awareness about hereditary cancer.

How do you know if you have a hereditary or higher risk for developing breast cancer?

 

Uncover your family history

 

To find out if you have a hereditary risk of being diagnosed with breast cancer  – start by taking a full health history of your own family. If any of your family members have battled breast cancer, find out how old they were when they were diagnosed, the type of breast cancer and the stage. And find out what age they were if they unfortunately succumbed to the disease. This family history should be as complete as possible and go back for as far as you can.

 

Your risk of getting breast cancer may increase if you have a first degree family member — mother, father, sister, or daughter — or multiple family members on either your mother’s or father’s side of the family who have had breast cancer.

According to the Centers for Disease Control, hereditary cancer syndromes are caused by mutations (changes) in certain genes passed from parents to children. In a hereditary cancer syndrome, certain patterns of cancer may be seen within families.

 

Genetic testing

 

The most publicly recognized breast cancer susceptibility genes are BRCA1 and BRCA2 but there are others. If you have a personal or family history of breast cancer, you can undergo BRCA genetic testing. A negative BRCA test result means that you do not have a detectable mutation in BRCA1 or BRCA2.  Some families have a BRCA mutation that is missed by this test, or another gene (s) that might explain the cancer in the family.  If you test negative for a BRCA mutation previously found in another family member, then you may have a true negative result.  A variant result means there is a variation in your genetic code, but it is unclear if it is the cause of the cancer in your family.  If you undergo genetic testing it is strongly recommended that you seek genetic counseling to understand the results and what the options are for your health.

 

Calculate your risk 

 

Studies have shown that your risk for breast cancer is due to a combination of factors. The main factors that influence your risk include being a woman and getting older. Most breast cancers are found in women who are 50 years old or older.

Some women will get breast cancer even without any other risk factors that they know of. Having a risk factor does not mean you will get the disease, and not all risk factors have the same effect. Most women have some risk factors, but most women do not get breast cancer. If you have breast cancer risk factors, talk with your doctor about ways you can lower your risk and about screening for breast cancer. 

Q&A: Ask the Doctor

Ask the Doctor: Q&A
Q: Three years ago, I had a double mastectomy and am now cancer-free. Unfortunately, my
plastic surgeon did a terrible job with the reconstruction. The left side implant is way off to the
outer side and looks larger than the right. The right side is way too far to the outside. There is
zero cleavage. Is there any way to re-position the implants to the more natural position of the
breast? I do not expect perfect but don’t like looking like a botched job. Please let me know if
your team can help. Thank you.
A: Congratulations on becoming cancer-free. At the Center for Natural Breast Reconstruction it
is part of our mission to help women move on with their lives after breast cancer. We focus our
efforts on helping women get their bodies back together with permanent “natural results.”
I’m sorry you are disappointed with your reconstruction results. If you have had radiation
previously, then it may be more difficult to have your breasts match with implant reconstruction.
If you have not had radiation then perhaps your implants could be revised or adjusted for an
improved appearance.
It is possible that using your own fatty tissue would be a more permanent option without
implants. Sometimes it is hard to start over with another approach but it may be necessary if
you desire a more natural and permanent result. If you would like more information about
natural breast reconstruction with your own tissue let me know.
We are here to help!
James Craigie MD

Q&A: Ask the Doctor

Ask the Doctor: QA’s
Q: I have a history of benign proliferative breast disease with associated atypical ductal
hyperplasia. I have had two needle biopsies and three surgical biopsies in my left breast. I took
Tamoxifen for five years and currently am taking Evista. Last year I completed the Myriad My
Risk Test resulting in a 37.9% remaining lifetime breast cancer risk. My monitoring plan since
2006 has been alternating diagnostic mammogram and breast MRI.
My most recent MRI located an enhancing nodule in my right breast. My oncologist has referred
me to a local surgeon to begin the process for prophylactic double mastectomy. I am interested
in natural breast reconstruction. I would like to schedule an appointment to discuss my options
with your plastic surgeons. I also will need to set up an appointment with the surgeon you use
for the actual mastectomy. I am not sure which appointment should be first.
A: Hi Stacy,
Thank you for contacting us. I am sorry you are having to make very difficult decisions in order
to prevent getting breast cancer. I commend you for being very vigilant with screening. As you
are aware screening alone won’t prevent breast cancer unless you act on the results of the tests
that indicate your risk is high.
Many women would consider preventive mastectomy in your situation. For many women
knowing that they can have immediate natural breast reconstruction for a permanent natural
result makes the decision a little easier to make. If you feel like you have any amount of extra
fatty tissue anywhere on your body then chances are you can use your own natural tissue. I’ll be
glad to answer any other specific questions just let me know.
James Craigie MD

Benefits of Autologous Reconstruction vs. Implant Reconstruction

When considering breast reconstruction, a woman is faced with a few options — she can

choose autologous reconstruction — which is the use of her own skin and tissue to

create a breast mound, implants, or go flat.

Recently, the recall of certain breast implants has made the news, as the FDA reported

their connection to 573 rare cases of anaplastic large cell lymphoma and 33 patient

deaths. As a result, the FDA asked Allergan to recall its BIOCELL textured breast

implants and tissue expanders and they obliged.

We are sure that this news is upsetting and leaves questions in the mind of patients

who wonder about implants and their safety, as well as the choice they should make for

their own breast reconstruction procedure.

At The Center for Natural Breast Reconstruction, we educate our patients on the

differences between all types of procedures and their risks, but our emphasis has

always been on autologous reconstruction. Here’s a little about each autologous

procedure that we do:

DIEP flap: This is the most popular type of perforator flap reconstruction due to its high

success rate and its ability to reconstruct the breast without the patient having to

sacrifice much needed abdominal muscles. In addition to reconstructing the breast, the

contour of the abdomen is often improved – much like a tummy tuck.

GAP flap: Similar to the DIEP, tissue is taken from the buttock area instead of the

stomach.

PAP flap: The Profunda Artery Perforator Flap (PAP) utilizes the tissue of the upper

thigh just below the buttock to reconstruct the breast following mastectomy.

So now that you know the difference between each procedure, why should you choose

autologous reconstruction over implants?

● Autologous reconstruction lasts a lifetime: Breast reconstruction using tissue

from someplace else on your body will last a lifetime. There is nothing synthetic

that can break or cause illness or other major issues. On the other hand,

implants will normally have to be replaced between 10 and 20 years.

● Breasts made by autologous reconstruction feels more natural: When your

breasts are reconstructed, you want them to feel just like your old breasts.

Implants do not always feel real, but since the tissue on your belly, buttocks, and

upper thighs is very similar to your breast tissue, it makes for a good, more

natural substitute.

Deciding what kind of procedure is best for you is a big decision. The best thing to do is

to gather all of your facts, talk with your doctor and your surgeon and weigh all of the

pros and cons before deciding on what’s right for you.

Woman to Woman

 

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.