Me

I knew in my gut it was breast cancer, so when the radiologist called it wasn't a surprise.  He called me when I was getting my hair cut...I didn't tell the stylist...just continued to look in the mirror to capture what my life was before the call. I finished my cut, and took a taxi to the hotel I was staying at...I was alone.  I called my husband and broke the news, then called the radiologist back with my husband on the line, so we could fully understand the diagnosis.

Kim

I had just given birth a few months before my first breast cancer diagnosis. All I wanted was to nurse my sweet baby boy. That was 29 years ago. I’ve had it two more times since then.

Bunny

I had a biopsy and was supposed to go for a follow up to get the results. I had no family history of ANY cancer & had convinced myself it was a false alarm but that morning I started to feel really scared.I actually changed into a pair of leggings I didn’t like because I didn’t want them to be forever associated with cancer. They called and said I needed to come later because my results weren’t uploaded yet. I pretty much knew then.Then they called an hour later to ask me to come in & asked if I could bring someone with me. They don’t ask you that if they’re going to tell you you’re fine. My spouse was out of town so I drove to the doctor screaming No no no no at the top of my lungs & crying hysterically.

DIAGNOSIS

My radiologist promised he would call me on a Thursday, I was on a business trip in Boston and had a hair appointment that night.  I decided the best way to wait out the call was to keep my appointment and hopefully he would call when I was finished.  During my cut, he texted me that he had my results and to call him.  I politely excused myself and went into the hallway and dialed his number on Skype (I didn't have a USA # because I live in Senegal).  The reception was really bad, but he told me I had breast cancer and that all three biopsies were positive.  Including one from my lymph node.  Skype was breaking in and out so I asked if I could call him back from my hotel in one hour and conference in my husband who was in Senegal.  He agreed and I went back to my haircut.  

Surprisingly, I was calm...this news was what my body had already told me a month ago ,when I found the lump, and everyone told me not to worry. My original radiologist didn't see the cancer and told me to wait six months and see if the lump changed...but I listened to my gut and had a second opinion

 

During my haircut,  I just kept staring into the mirror, wondering if I would ever feel normal again.  If I went back to my hairdresser today after chemo, surgery and proton beam, and sat in that same chair, I think I would still ask the exact same question, "when will I feel normal again?"

NOW WHAT?

Link with Breast Cancer Team

  • Ask referring physician and friends who have gone through breast cancer treatment for a recommendation. 

  • Do your research on your team.  These professionals are now major players in your survival, so if you don't feel comfortable with your team, switch it up!

  • Understand your diagnosis, staging and proposed treatment plan.

  • Ask about clinical trials and other options to support your treatment.

  • Discuss timing, ask if a port is needed and determine timing for surgery.

  • Buy a small journal to carry with you to appointments and write down questions  to ask your team

  • Buy an accordion file to organize documents .  

  • Call insurance and understand coverage (surgery, chemo, scans, wigs, port insertion, radiation, chemo cocktails including Neulasta, etc.).

Genetic Testing

  • Ask your breast team about genetic testing and consider running a full panel.  If you are not ready for a full panel, test for BRCA, STK-11 and MTHFR. These mutations can inform your treatment plan.

  • If you are BRCA positive, link with a team that specializes in this mutation. Understand treatment options and clinical trials.

  • STK-11 is rare, but if positive,   tx options may change.

  • MTHFR is important for surgery and if positive some options such as DIEP may not be an option due to the blood clotting factor.

Baseline

  • Ask for a baseline test before treatment starts.  Sometimes if the cancer is an early stage, these tests are not offered, but still critically important.  I started as a stage 2 then due to my PET scan I moved to a IIIB .  Knowing I had more lymph involvement also changed my treatment plan.

  • Understand what is best for you, PET, CT or MRI.

  • Ask about cardiac testing before chemo to make sure your heart is healthy.

  • Consider your own baseline for health, such as exercise. What can you do now and what do you want to continue doing throughout treatment?  Write down what your goals are during treatment.

  • Ask about oncotype testing and if surgical clips have not been placed, if that is needed.

Support

  • Think about who you want to surround yourself with.  Which friends and family members will be the most supportive?

  • Connect with breast cancer support groups either virtually or near you.

  • Discuss with your employer about short term disability, flexible working hours or remote working.  If you are your own boss, think about the support you will need to get through treatment. 

  • Stop often and breathe. 6 breaths in and 11 breaths out.

  • Consider mediation and yoga to bring mindfulness into your treatment.

  • Thank your body for its strength.

  • Think about your treatment plan and if it jives with your lifestyle.  Are items negotiable?  Can you add adjunct therapies such as acupuncture, massage and reiki?

  • Is fasting an option?

  • For chemo induced hair loss, how do you see yourself managing this? Bald, scarfs, wigs, hats, etc. Can you prepare for this?