Sharing my Story on LIVESTRONG

My breast cancer story was shared this week on the LIVESTRONG blog and social media accounts! A little surreal to see it out there but very cool.

Here's the link:  https://blog.livestrong.org/sharing-my-breast-cancer-journey-a56f6392278

Be sure to check out their website....tons of great resources and info!

T-minus 11 hours.....

The big day is tomorrow...11 hours from now I'll be checking in at 0530.

I think I'm ready...I've made my list and checked it twice..or three or four times. ;)

Still need to finish packing for the hospital but other than that I think I'm basically ready.  Every nook and cranny of the house has been cleaned...I even cleaned inside my oven this weekend.  It just felt like there was a lot to do and not enough time, but now I'm sitting here looking for things to do.

Friday was my last day at work and my amazing  coworkers threw me an awesome party!  Since my birthday is also tomorrow, it was a combination birthday/send off.  We had tons of food and they gave me such sweet, thoughtful gifts.

My coworker made this cute cake!

In our main hallway

Each card inside has a personal note written
on it from my friends!

Yesterday, we had a little family celebration.  And today, my son and I went to church and then out to lunch.  Then, I took my son by the library to pick up a few books for him to read....he will have a lot of downtime too.  After that, it was time to head out to the hospital for my lymph node injection.

I was taken to Nuclear Medicine and had to undress from the waist up.  I wore a gown open to the front and laid down on the imaging table.  The tech marked the left shoulder with a felt marker and the word "yes"!  

The radiologist then came in, did the timeout, prepped the breast and injected the dye just under the skin near the areola.  

This was NOT as bad as I had imagined or read.  It truly was a tiny needle stick.  It DOES sting quite a bit as they push the fluid in, but it is over in about a minute.  The stinging initially felt like a bad bee sting, but then more like an ant bite.  She told me it was very similar to a TB test and she was spot on!





The Nuclear Med Tech moved my table into the machine, took one image , and then I was done.

Image taken right after the injection...the dye will be taken up into my lymphatic system
overnight so that Dr. K will be able to identify the sentinel node in the morning.

Tonight, I have to drink 24 oz of a pre-op drink then nothing after midnight.  Tomorrow morning, I have to drink another 12 oz of the same drink and take a Celebrex pill before I arrive at the hospital.  It'll be a very early morning and a long day.

Mentally, I feel ready...let's just get his done.  Although, the reality of the whole lymph node biopsy is a bit scary.  That is really my biggest concern right now....coming out of this surgery and still having cancer.

I have so many wonderful friends, family, and even strangers who are praying for me right now and it is definitely felt.

"Be joyful in hope, patient in affliction, faithful in prayer."
Romans 12:12

"Do not be anxious about anything, but in every situation,
by prayer and petition, with thanksgiving, present your requests to God."
Philippians 4:6

I researched a lot on what to pack and what I needed to have at home.  I plan to do a post on that subject soon so that I can tell you what worked and what didn't, if I forgot anything, etc.

In the meantime, I'm going to chow down on some dinner before that NPO status kicks in!

MY TIMELINE:

12/22/16  Routine Screening Mammogram

01/18/17  Repeat Imaging and US of left breast; LUMP found.

01/20/17  Core Needle Biopsy

01/24/17  Biopsy results positive...Stage 0 DCIS, left breast

01/25/17  Meeting with Breast Center Navigator and Genetic Testing

01/30/17  Consultation with Surgical Oncologist, Dr. K

02/08/17  Consultation with Plastic Surgeon

02/21/17  Pre-op Visit with Dr. O's nurse

02/27/17 Pre-op Labs and Testing

03/05/17 Lymph Node Injection

03/06/17 SURGERY DAY!

Treatment Options & Genetic Testing

So, here we are on 01/25/17....I was diagnosed yesterday with Stage 0 DCIS in my left breast.  Today I am heading to the Breast Center to meet with the Patient Navigator and the Genetics Nurse for Genetic Testing........

In the Breast Center:

A mastectomy pillow (goes under your arm) given
to me at the Breast Center.

I arrived at the Breast Center and was greeted by the Breast Center Patient Navigator, "A". She was very sweet and very knowledgeable.  Please be sure to check with your facility to see if they offer this assistance.  It is very helpful, especially in the beginning to have someone who knows the ropes to guide you through all of the information, appointments, and help you choose the best physicians for your treatment.

"A" started by going over my biopsy results in detail and discussing what it meant.  I had researched some online the night before based on our previous telephone conversation, so by the end of our talk, I felt like I had a thorough understanding.  We discussed my treatment options next.

For me, Stage 0 DCIS, does not require chemotherapy.  No chemo...this was good news.
It does require surgical intervention though because left untreated, DCIS becomes invasive and can spread.  "A" assured me that all 3 of my surgical options were good and produced positive outcomes for patients.  

Here's how my options were laid out:

Option 1: Lumpectomy followed by 5 days/week x 6 weeks of radiation and 5 yrs of hormone suppression medication (leading to menopause symptoms).

Option 2: Left (unilateral) mastectomy and reconstruction followed by 5 yrs of hormone suppression....no radiation.

Option 3: Double mastectomy and reconstruction ....no radiation, no meds

Additionally, if the latter two, there is implant vs natural tissue reconstruction.

All of these would be discussed in further detail with the Surgical Oncologist. My Surgical Oncologist would be the one to provide the statistics on the options, but "A" said that none of them would be "wrong".  This is most definitely a personal choice.  

We also discussed the physicians in the area and the ones that the Breast Center recommends.  I had already been told by several friends and coworkers that Dr. K was the absolute best for Surgical Oncology. "A" confirmed this and started working on setting me up with an appointment the following Monday.  "A" told me that I would hear from her or Dr. K's office to confirm my appointment.  She also recommended a Plastic Surgeon (from the group I had already heard about from friends) who works closely with Dr. K and is excellent with the natural tissue reconstruction option.  She would work on getting me an appointment with his office, as well.  She was anticipating that I could have surgery in just under a month...around Feb. 23rd.

I was then introduced to the Genetics Nurse, "E".  "E" explained the testing process and had several charts to show me how it worked and what the results would entail.  Most people have heard of BRCA 1 & 2 testing (thanks to Angelina Jolie), but my test would cover 28 genes.  The genes being tested would cover not only my genetic predisposition for breast cancer, but for 8 different cancers.  This was the one I took:

It was a simple saliva test...basically spitting into a test tube....a lot of spitting!  
We discussed what the findings would mean for my family....like the fact that regardless of the results, my niece should start getting routine mammograms at age 30 (instead of 40) just because she now has an Aunt with breast cancer.  Results would be available in 7-10 days.

I left the office with a ton of information swirling around in my head!  So many numbers and details.  This is one of those times, you want to have something to write things down on (or another person to take notes/listen).

It's all a bit overwhelming, but I felt good after my appointment.  Again, for me, this all signified a working, active, plan...things were moving in a positive direction.  I spent the rest of the day and evening updating family and friends and reading about the surgical options online.

I encourage you to be proactive if you have received a breast cancer diagnosis. 
Arm yourself with information and don't hesitate to advocate for yourself.  
Ask lots of questions!  
Write everything down and start a folder or file to keep all of the paperwork you will gather along the way...there is a bunch!  

Please feel free to comment or to ask questions if there is something you'd like to know more about.  I'm happy to share anything that might help you in your journey.

MY TIMELINE:

12/22/16  Routine Screening Mammogram

01/18/17  Repeat Imaging and US of left breast; LUMP found.
01/20/17  Core Needle Biopsy
01/24/17  Biopsy results postive...Stage 0 DCIS, left breast
01/25/17  Meeting with Breast Center Navigator and Genetic Testing

The Life-Altering Phone Call

My biopsy was Friday, 01/20/17...this is Tuesday, 01/24/17.  I was told that biopsy results would be in 72 hours, but figured that Saturday and Sunday wouldn't count.  I tried not to think too much about it over the weekend and just took it pretty easy.  I worked Monday and Tuesday.  I was a little bruised at the biopsy site and still had steri-strips in place, but the only things that really bothered me was my bra rubbing on the site and the swelling causing my scrub top to irritate my inner arm.  Of course, my coworkers and family were asking about my results, but I was trying not to count on them until Thursday.

I'm a NICU nurse.  A typical routine for our patients is an every 3 hour feeding schedule. This shift I had 3 patients...0800, 0830, 0900...1100, 1130, 1200...etc.  I was mid-way through my second round and decided to walk a dirty bed to the cleaning area while milk was warming for my little patient.  My phone was in my pocket.....needless to say, every time it vibrated that past week, I had jumped.  This time was no different.  I felt the vibration and when I looked in my pocket I recognized the extension from my OBGYN's office.  I jumped into the supply closet next to where I was standing and took the call.....time stood still for a moment.

My long-time OBGYN told me he had my results....he didn't make me wait or ask, thankfully.  His words were: "It's the best of the worst diagnosis, Julie."  I was informed that the biopsy showed Stage 0 DCIS....ductal carcinoma in situ.  He went on to briefly explain that this was "the good kind" and that the Breast Care Navigator would be in touch to walk me through this new journey.

It wasn't a long phone call....but it was life-altering.  

In that moment, 

standing in a supply closet in the middle of the NICU, 

I became a cancer patient....a woman with breast cancer.  

I walked out and just started pushing the dirty bed down the hall. While I was in the empty cleaning area, I quickly dialed my mother and told her what little I knew.  She would inform my Dad and Granny since I was at work.  I asked her to wait and let me tell my son when I got home.

Then, it was back to my pod and time to get back to work.  It didn't feel real and I definitely think I was in a bit of shock, even though I thought I was prepared for this possibility.  My two coworkers were working with a patient when I returned with the news.  They both immediately said: "Do you need a minute? Do you need to go?"   My response was something like: "I better not....I think I need to just keep moving.  And, the babies need to eat."

The baby was bottle feeding that round and took his time...I remember sitting there and just re-playing the phone call in my head.  One of the gals asked me what I was thinking and I just said: "I have breast cancer.  That's really weird to say out loud."  

Within the hour, the Breast Center Navigator called me and we scheduled a meeting for the next morning.  She gave me a little more information over the phone and let me know that I qualified for genetic testing and that I could complete it the next day too.

My lesion...~3cms located at 1:00, 5 cm
from the nipple on my left breast

At the end of the day, here's what I knew:

• "In situ" means "in place". This means that the cancer is usually contained where it is found and Stage 0 means that it appears to be non-invasive.
• DCIS is furthered contained in the milk ducts.
• I would meet with the Navigator the next day at 09:00 to review everything and start making plans and appointments. She would help me with surgeons and appointments.
• Because I am 40 with breast cancer and have a grandmother with a history of uterine/ovarian cancer, genetic testing would be offered, recommended, and should be covered by insurance. It would be completed at 10:00 the following day.
• Most likely, the MDs would offer me three options: lumpectomy, unilateral mastectomy, or double mastectomy....details to be discussed the next day.
• I would need to talk to a surgical oncologist for lumpectomy or mastectomy and a plastic surgeon for reconstruction. 

My son took it well that night. Calm and cool as usual. He gave me a big hug and told me it was going to be okay.  Pretty sure I didn't sleep that night but a few minutes here and there. No tears, just a lot of praying and thinking.

It was a lot to take in, but I actually felt better knowing...as crazy as that sounds, it was better than wondering and waiting.  

MY TIMELINE:

12/22/16  Routine Screening Mammogram

01/18/17  Repeat Imaging and US of left breast; LUMP found.
01/20/17  Core Needle Biopsy
01/24/17  Biopsy results postive...Stage 0 DCIS, left breast
01/25/17  Meeting with Breast Center Navigator and Genetic Testing