Navigation & Advocacy

December 20 - 28th, 2021

I have so many thoughts and things to share with regards to the week after finding out that I had breast cancer, but before I get to those I want to provide the following warnings:  

• Some of the experiences and thoughts I am about to share may be triggering and difficult to hear. Proceed with caution.

• Our national healthcare system and the processes that govern it are broken.  

While I share with you my personal experience navigating through the broken system, I don’t necessarily blame the healthcare personnel themselves but rather the insurance companies, healthcare policies and administrative bullshit that govern how our healthcare personnel provide care.   

This was my experience…

As I shared in an earlier post, the test results were shared via Mychart on Monday, December 20th, 2022.  I immediately called the Breast Center of the hospital where I was to receive care. (I was not allowed to choose my hospital, as my insurance carrier dictated where I was to receive my care.)  After waiting to reach a human for 15 minutes, I left a message detailing that I would like to establish care and talk with a nurse navigator to go over my results. 

My primary care physician (PCP), whom I talked with the afternoon of my biopsy (December 16) when I requested a Breast MRI (per recommendation of the Radiologist who performed the procedure), shared with me that the Breast Center would be taking over my care once results were posted and confirmed it was cancer.

I wanted to “keep the ball” rolling as my Radiologist recommended by reaching out to the Breast Center ASAP.  Despite my efforts, I had to wait…  

Imagine finding out you have an aggressive form of breast cancer and while you know a little bit about how to read the results, you don’t fully understand what the implications of the results are.  It’s pure torture waiting.

Meanwhile, my dear friend Ellen, through her “Friends and Family” program at the University Chicago Medicine (UCM), got the ball rolling for me to get set up with a second opinion.  

Tyler and I decided that even if the insurance company wouldn’t cover a second opinion, we needed to make sure that I was receiving the absolute best care. So we proceeded knowing the second opinion would be worth the possibility of having to pay for it out of pocket. 

I could not believe how quickly UCM got to work. Their Breast Center nurse navigator immediately started working super hard behind the scenes to get my medical records, talk with my insurance company, set up initial appointments…all the things I expected would happen at my assigned Breast Center. 

Even with the efforts from UCM’s Breast Center nurse navigator, I did have to reach out several times to my PCP’s office to place both an order for me to receive a second opinion at the UCM as well as request a prior authorization to my insurance company.  

I am not sure what the breakdown in communication was with my PCP’s office but at both UCM and my insurance company there was a delay in receiving the necessary paperwork and information they needed.  Argh. I spent lots of time on the phone trying to get to the bottom of it all.

Unfortunately, I did not hear anything back until late on Tuesday from my assigned Breast Center and that was after reaching out several times throughout the day. 

The nurse navigator #1 from my assigned Breast Center who talked with me was very kind and sympathetic to my story and explained what the results of my biopsies were and what that implied.  Sadly, what she shared, the reality of my situation, didn’t make me feel any better.

She shared with me that likely with my type of cancer that I will be starting with chemo first and then do surgery.

“CHEMO!  F***, I was hoping to not have to do chemo.”  I thought while listening to her 

“Shit this could still kill me?” I added in my head

“Okay, I have a few questions.” I said to the nurse navigator #1.

“When can I start treatment?” I asked

“Well, let me look at the schedule.  The first available I have is 01/10/2022.  I will book this to save a placeholder and then go find the oncologists to see if we can move you up after reviewing the results of your biopsies” she said

“WHAT? It’s December 21, 2021”, I replied.  “That's a long way out!” 

 “Unfortunately, that’s the earliest due to the holidays and we have some staffing shortages.” She stated

“I  heard about that through a friend, who is also going through breast cancer right now. You are down two oncologists, correct?” I asked

“Yes, that’s correct.” She answered

SIGH “Like literally all my worst fears are being confirmed.  I have an aggressive cancer, the Breast Center took forever to get back to me, they are down physicians AND I can’t be seen for several weeks!!” I thought in my head

“Okay, I have a few more questions.” I said trying to hold back tears and prevent my voice from cracking

“I’m concerned about the coronavirus and the rise in cases and hospitalization with Omicron. What if this impacts my ability to get treatment and then the cancer has time to grow?” I started to cry a little.  

“Shit. Here are the tears.” I thought

“Given your age and type of cancer, you will not have your treatment impacted. You will get treatment. You will have priority.” She said

“But I can’t even see someone until the 10th to establish care and set up a treatment plan.” I replied starting to cry harder

“I know, I will work on this to get it moved up for you.” She added

“I see in your chart that there is a prior-authorization to get a 2nd opinion, can you tell me more about that?” she asked

I stayed silent thinking about how best to respond without losing it.

The nurse navigator #1 added in my silence, “You are absolutely entitled to get a 2nd opinion, but it can add a delay in your care and additional tests.  It can be exhausting and you really need your energy to fight this cancer.”

“F***.  YOU WANT TO TALK ABOUT DELAY IN MY CARE?!!  I FOUND THIS CANCER IN 2019! IT WAS JUST RULED “DENSE BREAST TISSUE!”  I CAN’T GET INTO SEE AN ONCOLOGIST UNTIL 01/10/2022!!” I screamed in my head

I composed myself. “It’s not her fault Ashley, talk calmly and honestly,” I thought.

“Well, I have to be honest with you.  I don’t trust anyone.” I said calmly but then I started to sob uncontrollably

In between sobs, I added the following:

“I found this lump in February of 2019. It was just ruled “DENSE BREAST TISSUE” at the time.  It continued to grow and caused me more pain.  

Do you know how many times I did self breast exams with the symptoms list pulled up on my phone??  Like weekly.  Do you know how crazy I felt?

Even my breast exam during my annual physical with my primary physician this past November said, ‘Normal breast exam, dense breast tissue.’  I had to ask for a mammogram and more follow up because I still felt something was wrong.

I then had to set up the appointments myself after six weeks went by and no one contacted me.

AND now my worst fears are confirmed  AND this might kill me since it has had years to grow.

AND you tell me that I can’t get in until 01/10!

I have a family, I have two young children that I want to watch grow up.  I want to finish what I started!”

I was pacing the living room now, with my heart racing and tears streaming down my face.  

“How old are your children?” she asked softly.

I take a big breath to catch my breath, “Lincoln is 8 and Maya is 6.”

“How are they doing with all this?” She followed up.

“They are doing as expected. We have explained it to them in a way they understand but I want to get them therapy.” I replied.

“That's a tough story and I get where you are coming from.  I know that this doesn’t seem appropriate, but I need you to sort of blindly put your faith in us. The medical oncologist and surgical oncologist I have you scheduled with are the absolute best.” She stated.

“I just want to get this cancer out of me ASAP and receive the best care in order to get the best possible outcome.” I added. 

“Okay, let me get to work moving up your appointment and I’ll get back to you.” She stated.

“Okay” I signed. “Thank you.”  

I sat on the chair after hanging up the phone wondering, “How could it be that I have spent my life advocating for my patients and working in this healthcare system with oncology patients at that…and this is my experience?”

A short time later, the nurse navigator #1 did call back and say that she was able to move up my appointment with the medical oncologist. 

“I have you meeting with the Surgical and Medical oncologist back to back on Monday, January 3, 2022 starting at 2 PM,” the nurse navigator #1 replied as soon as I picked up the phone.

“Thank you so much,” I said. “I really appreciate it!” 

About two days later, I received another call from a different nurse navigator at my assigned Breast Center.

“Good afternoon, I’m calling because your doctor would like to order some additional tests based on reviewing your chart,” the other nurse navigator #2 said.

“Your doctor would also like you to have a bone scan and CT scan in the coming weeks,” she added.

“WHAT? Like based on my chart review, she thinks there is a chance that my cancer has spread? S***, this is bad!”  I thought to myself.

“Because of your insurance, you will need to call and set up the CT scan at one of their facilities. I have your bone scan set up for you at our facility on January 4th.” 

“Okay, I have so many questions.” I said trying to invoke some courage in my voice.

“Sure,” the nurse navigator #2 replied.

I took a big breath, “Did she order the CT and bone scan to see if the cancer has spread beyond my breast? Like if she ordered the bone scan then she’s checking for mets, right?” My voice started to quiver.

“Yes,” she replied.

I started to sob uncontrollably.

“Yet I can’t get in to see a doctor until January 3rd and I don’t know if this is going to be my last Christmas I get to celebrate with my family!” I somehow managed to get out.

“Look, I’m not God. So, I can’t say if you are going to live or die, but try to enjoy the holidays with your family as best as you can.” he nurse navigator #2 added.

“WHAT?  DID SHE REALLY JUST SAY THAT TO ME?!” I shouted in my head.

My rational, calm brain was gone at this point. I just let it all out.

“Listen, I want you to imagine being in my shoes…

Imagine that you found this lump growing inside your breast in February 2019 and it was just ruled to be dense breast tissue at the time.  

Over the years, it grew and became hardened and painful.  

Imagine standing in front of the mirror doing breast exams with the symptoms list pulled up on your phone, wondering if you are going crazy?

YOU pushed to get another mammogram and ultrasound even after your physician determined it was a normal breast exam.  

NOW, you have been told you have an aggressive form of breast cancer whose treatment can’t be delayed, but you can’t get in to see a doctor for weeks.” 

She cut me off, “I know that it's hard to be told to wait, but we don’t have any other options at this time” she added.

“Listen, I KNOW too much,” I pleaded.

“I worked for a Comprehensive Cancer Center on various projects all through undergrad and graduate school.

I worked on an oncology floor for over a year at a hospital taking care of patients, reading their charts and talking about their lives.

I advocated for my patients to get the best care possible, now it feels like the same isn’t being done for me!

Imagine, having my diagnosis and being told to wait…

I am YOU, imagine having MY diagnosis with your background and having someone tell you to wait.” I concluded

The nurse navigator #2’s voice was much softer as she replied, “I’m sorry, I’ll see what I can do.  You call and set up the CT scan and I’ll do some more work on my end.”

I hung up the phone angrily and started to dial up the number to set up the CT scan, I didn’t even get through the prompts of the phone call and the nurse navigator #2 was calling me back on the other line.

“I got you in on December 28 with the medical oncologist!” she told me excitedly.

“Thank you, thank you, thank you.” I replied,  “I was just in the process of setting up my CT scan.”  

“Good, you get the earliest appointment you can and try to enjoy the holidays with your family” she replied.

“I will, I will do my best.  Thank you again!” I told her.

I was able to get the CT scan the same day as my appointment with the medical oncologist, December 28th. 

“At least now, I should have some answers sooner.” I thought as I hung up the phone with the radiology center to set up my CT scan

I still couldn’t shake my frustration and anger with how hard I had to work and push to get answers and my appointments within a reasonable amount of time.  

The number of  hours I had to spend on the phone with my healthcare system and insurance company was such an added layer of weight to an already intolerable load. UNACCEPTABLE!

“How could this be happening to me?  How is it this hard?  Is it this hard for everyone?  What about the women who don’t have the time, resources, background, etc. to do this work?  What happens to them?” I kept repeating over and over in my head like a bad movie.

Nonetheless, I oddly still felt such a sense of relief after having all my appointments FINALLY set up.  To know would be better than to not know, I’ve always been like that…. 

The not knowing for the next 5 days would be some of the most challenging, dark moments of my life thus far.  

Reflection

When I first wrote these words, I was still inside the whirlwind—navigating a diagnosis, advocating for myself, and trying to find solid ground in a healthcare system that didn’t make it easy. What I didn’t fully understand then was how much this experience would shape the direction of my work and the heart of my practice.

In the years since, I’ve heard pieces of my own story echoed in the voices of so many patients and friends—those with dense breasts, those facing delayed answers, those feeling lost in the process, or unheard, or uncertain of what to do next. That recognition has been one of the reasons I’ve spent the last four years advocating at the local, state, and federal levels for improved screening, better policies, and clearer pathways for women navigating breast health.

When I look back now, I see the beginning of a deeper purpose....

This post captures a moment where the personal and the professional collided, and from that collision came a new clarity: that healing is not only about treating symptoms—it’s about guiding, educating, empowering, and standing alongside people as they move through some of the most vulnerable moments of their lives.

Reposting this is a reminder of why I do this work, how far I’ve come, and why advocacy and patient-centered care remain at the core of Growth Therapy. My hope is that anyone reading it—especially those navigating their own uncertainty—feels seen, supported, and reminded that their experience matters.