Bobbie Niehaus My Pink NavigatorBobbie Niehaus

My Story. My Life. My Passion For Pink.

Being diagnosed with breast cancer at the age of 31 was devastating. I never imagined or thought I would ever have to worry about having breast cancer affecting me. I had no family history nor was I educated about breast cancer. I always thought it was hereditary through genetics. But when I received the phone call the morning of 12/12/12 and hearing the words, “you have cancer” turned my world upside down. I remember tears rolling down my face, and really couldn’t hear anything else that was being said on the other side of the phone. With my husband beside me holding me, and my German Shepherd Zena laying her head on my lap…. I knew that I couldn’t give up hope. I had a lot of life ahead of me and I was ready to fight.

 

The next couple weeks were like a roller coaster. Consults with my general surgeon, plastic surgeon, an Oncologist, and lots of testing. A second biopsy determined that my cancer had spread and ruled out a lumpectomy in my left breast. Based on the type of cancer and how aggressive it was, and my age; I made an educated decision to have a bilateral mastectomy, even with the cancer only in my left breast. This was devastating to know I was going to lose my breast at the age of 31. I was scheduled for my bilateral mastectomy on December 28, 2012.

 

After surgery, I stayed overnight at the hospital while they managed my pain and discomfort. I was discharged the following day, and sent home. I can’t explain the pain and discomfort. I was bandaged and wrapped and had a drain on each side. Now it was time to rest, let the healing begin, and learn what my new normal is. I slept in a recliner for a couple of weeks with several pillows. Learning how to let others help me bathe, and dress me was hard. It took over a month to actually be able to sleep in a bed, and even then, I had roll out of the bed to get up. While I was healing was surgery, my oncologist ordered an Oncotype test that would determine if I was a candidate for chemotherapy and it would tell us my risk of reoccurrence. The Oncotype DX report includes a recurrence score result, which ranges from 0-100.

My Journey For Breast Cancer Awareness

Cancer Results and TreatmentAfter waiting several weeks, my results came back and determined I was a high risk of reoccurrence. My score came back a 47, which was on the high side. I was scheduled for a port placement that very next morning, so I could start chemotherapy that following Monday morning, which was February 4th. My treatment plan consisted of high doses of Adriamycin, Cytoxan, and then Paclitaxel. After finding out I was HER 2 positive, Herceptin was added to my treatment plan. Her 2 positive means that my cancer tested positive for a protein called human epidermal growth factor receptor 2 (HER2), which promotes the growth of cancer cells. Her 2 positive cancers are very aggressive and spread quicker.

 

I went every two weeks on a Monday for my check up with my oncologist, blood work and treatment. I started with the Adriamycin and Cytoxan regimen and had 4 high dosage treatments every two weeks and then I started the Paclitaxel and Herceptin and had 4 high dosage treatments of these two together. The Herceptin was continued every 3 weeks afterwards for a complete year. I was also put on Tamoxifen for the next ten years. Tamoxifen is used to prevent and treat breast cancers that test positive for estrogen receptors (ER+). It blocks the effects that the hormone estrogen has on cancer cells.

 

From my first treatment to my last treatment, I struggled and was sick all the time. I was lucky to have 2 good days between treatments. The side effects became worse and worse after each completed treatment. They consisted of nausea, heart burn, appetite changes, neuropathy, weakness, dizziness, hair loss, headaches, fatigue, stiffness and severe bone pain. The pain was so severe that I could barely get up out of bed or a chair. It felt like every bone in my body was radiating. Words can’t explain how sick I was. Hearing that I probably would not be able to get pregnant after my aggressive chemotherapy treatments was actually the hardest thing of all. Where we had to act so quick, I didn’t have any time to talk to a fertility specialist to preserve my eggs.

Cancer Side Effects and ReconstructionI started to lose my hair after my first chemotherapy treatment. Cancer had taken my breasts and now it was taking my hair. But cancer wasn’t going to take my spirit or my positive attitude. I made an appointment to have my hair cut into a pixie and we added pink in the top. If I was going to lose my hair, I may as well have a little fun. I ended up shaving the rest of my hair off within the next week. I started doing research and watching you tube videos and learning how to tie scarfs on my head and had several different styles of wigs. Along with watching videos how to apply makeup and draw my eye brows on. I attended the Look Good Feel Better makeup class provided by the American Cancer Society after my first treatment. I didn’t lose my eye brows and eyelashes until after my final chemotherapy treatment in May 2013.

 

August 12, 2013 which was a month after my last chemotherapy treatment, I had my first stage of breast reconstruction. I could start to feel whole again. I received expanders with alloderm to re-stretch my skin over time. I went to see my plastic surgeon every 2 to 3 weeks to receive a “fill.” She would inject saline into the expanders, anywhere from 50-70cc’s. The first time, she injected 90cc’s but I was in extreme pain after my first “fill.” This process took 6 months, and then I was scheduled to receive my breast implants. On February 4, 2014, I received my implants. After following up with my plastic surgeon multiple times, I was told nipple reconstruction was not recommended. In May 2014, I was scheduled to get my 3 dimensional nipple tattoos.

 

One of the side effects from Tamoxifen is developing polyps or cysts on your ovaries. In the summer of 2014, I started experiencing discomfort and pain. My oncologist sent me for a CT scan, which determined I had several cysts or polyps growing on my ovaries. We decided to keep an eye on them and repeat a scan in November 2014. That scan determined the cysts/ polyps had grown, doubling in size, and had multiplied. After consulting with my OBGYN and Oncologist, it was suggested and recommended I have a hysterectomy since my cancer was estrogen fed. Cancer had taken my breasts, and now was taking my reproductive organs. This was devastating news for me. I have always wanted children. My hysterectomy was on April 3, 2015.

Cancer Ongoing Fight Pink PromFrom day one of my diagnosis, I was constantly thinking of ways to get involved to spread awareness and educate others. I started hand painting bottle cap necklaces and selling them to raise money and promote breast cancer awareness. Amber Philpot interviewed me and shared my story on WKYT. The response to the interview was overwhelming.  I found out that there were no support groups for patients diagnosed under the age of 40 in Lexington and I urged my Oncologists Office that we needed a support for young women because we face many different issues, such as sexuality, and fertility. So eventually we started the group, and it is called The Rosie Ring. Then I was approached by Peggy Wheeler, a Nurse Navigator at Baptist Health about helping start a support group through Baptist Health for young women diagnosed under the age of 40. This support group was known as the S.O.S, Strength of Survivorship. We made the front page of the pink newspaper in October 2013 sharing the news of the S.O.S.

 

I was invited to be in fashion shows, and other events to share my story. I have been interviewed multiple times on local news, educational programs and featured in several local magazines. I started volunteering for Kentucky Pink Connection and Susan G. Komen Lexington. I have sat on the Race for the Cure Committee and was Chair of the Pink Out Festival.  I attended my first Young Survival Coalition Conference for young women affected by breast cancer in 2014. Afterwards, I was invited to be a State Leader for the Young Survival Coalition and soon after that asked to be on the Board of Directors for Susan G. Komen in 2014. I currently remain a State Leader for the Young Survival Coalition, but recently resigned from Susan G Komen Board of Directors after serving for 3 years.

 

I have dreamed and thought about running my own non-profit, and this year my dream became real. Having a nonprofit and being able to serve others in their fight with breast cancer has been my passion and I am so happy that I can make a greater impact in someone’s life. To make their fight easier and comfortable means the world to me.

Patient Navigation

We will help navigate patients through their journey and provide survivorship support. We are here to educate patients and make them aware of services, care product, and resources that are available to them.

Care Packages

We provide chemo, surgery and beauty bags. The chemo and surgery bags are full of care product and resources to help make a patients fight easier, less stressful and more comfortable. The beauty bags are full of skincare product to help with the side affects from treatment and to boost their self-esteem.

Patient Support

Our unique mentoring program, “The Pink Coalition” will connect newly diagnosed patients with survivors. By pairing these breast cancer survivors with these individuals we wish to create a system that will guide and support those individuals during what can be a scary and difficult time: a diagnosis of breast cancer.

Eliminating Barriers

As funding allows, we will provide assistance with transportation and lodging expenses to and from follow up visits and treatments..

Sherri Skoien My Pink Navigator

Sherri Skoien

My Testimonial.

My name is Sherri Skoien. When I was first diagnosed with breast cancer, I was scared, in shock, numb, fearing the worst. I didn’t have a clue who to contact, what to ask, was I going to die? All these thoughts ran through my mind. I called a friend who put me in touch with Bobbie. I will never forget that phone call. Bobbie immediately calmed me down, she answered some questions that I had and gave me lots and lots of resources to help me through this very difficult time.

 

Her strength, her determination, her compassion, her knowledge all helped me get through the most worst time of my life. Bobbie changed my life for the better. She was always available to answer any questions that would pop up as I met with so many different doctors. It was all so scary. She helped prepare me for what to expect, and what to ask the doctors and how to go in prepared for each appointment.

 

I would recommend anyone newly diagnosed with breast cancer to contact Bobbie at My Pink Navigator.

Survivor Kristen

Diagnosed At 31.

Kristen GriderThe word “Cancer” is easily one of the most terrifying words in any language. When you are a 31 year old mother of 3, with no family history of Breast Cancer, you never expect to hear “you have cancer.” That was the call I received on September 18th, 2017. The next month was a whirlwind of appointments with general surgeons, plastic surgeons, genetics counselors, MRI’s, and Radiologist for more biopsies. After 5 biopsies and 2 more MRI led biopsies scheduled, I decided the best path for me was to have bilateral mastectomies, on October 24th, 2017.

 

When you are having to make these life altering choices, with no true understanding of how you will physically/emotionally handle your life long decision, finding someone who has been through this path helps you understand that you are not alone. Bobbie, Founder of My Pink Navigator, was such a calm presence through this entire process. She brought me a surgery care package the day of my mastectomies, followed up with me after all of me surgeries so far, and truly cares about all the people she is able to reach out too as they go through their cancer process.

 

After seeing her ad in a Kentucky Living Magazine Breast Cancer Awareness 2017 edition, I messaged her through her site not really knowing what to expect. What I was lucky enough to find is an amazing Pink Warrior who’s life goal is to spread comfort to all people facing their new path in life as a Survivor.

My Pink Navigator Testimonial

Survivor Natalie

Diagnosed At 31.

My Pink Navigator gave me support and guidance when I needed it. It provided me with someone to talk to that has experienced this journey firsthand. That is so important during this journey. To know that you’re not alone and have someone that can offer words or advice and wisdom. The care packages are so thoughtful and each thing is needed for different experiences throughout this journey. It is so important to empower women during this process so they feel loved, educated, positive, and lifted up.

Support and guidance provided by a survivor who has already fought the battle is a unique position this program also helps provide.

If you or someone you know has recently been diagnosed or is going through cancer treatment, send us a message today.

Latest News & Fundraiser Information

  • Join us for a night out benefiting My Pink Navigator Friday November 15, 2019!

  • Join My Pink Navigator at Sedona Taphouse every Monday in March for lunch or dinner for Steak Out For Charity.

  • Dillard’s and My Pink Navigator presents to you a Bra Fit Pamper Party for a Cure! Date/Time: February 24th, 2019 from 9am &

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