I’m a mom, a wife, and a nurse. I’m forty-two years old. I’m also a breast cancer patient. This is the story of my initial diagnostic work up and how my wonderful, nagging mother got me to seek a second opinion and changed my course of treatment.

One day in March of 2024 on a routine screening mammogram they found a highly suspicious mass in my left breast and a highly suspicious lymph node in my left axilla. I initially believed that it would turn out to be a cyst, as I had previously had a cyst in my right breast, which was observed for three years before it was declared benign. But the words “highly suspicious” had never been used with that one. I imagined these masses with long overcoats pulled up to their noses. Dark sunglasses on their faces and them peaking around corners…just watching me. Highly suspiciously.

After a diagnostic mammogram and ultrasound confirmed these highly suspicious fellows, plus a bonus third highly suspicious new mass in my left breast it was time to get a biopsy to understand this new unholy trinity. It was the last day of March when I had an ultrasound-guided biopsy of all three areas. The resident and the aloof attending doctor bent to their work arguing over technique. The ultrasound tech tried to chat with me to smooth this situation over. I had actually been a nurse at thhis very same cancer center I was now getting the biopsy from. But I had been in the surgical genitourinary cancers department. I often quipped I left that job because I got tired of meeting patients with their pants off. Now here I was, topless, uncomfortable due to the position I had to lay in, talking with three strangers about my life. Children? I had three. Two biological daughters and one bonus daughter. Job? A Nurse Care Manager for a PCP clinic on the west side of the Salt Lake valley. Husband? Truck Driver. He’d left his company of 30 years as a driver to become his own boss. Stress??? Well yes. Cancer was never something I envisioned for myself, and I’m sure I wasn’t alone in that particular attitude.

I remember later that night praying. Praying? I didn’t even know what I believed in anymore. But I prayed that the tissue would all come back benign. Even though the attending doctor basically told me this was cancer, I still hoped he was wrong. He wasn’t.

I got a phone call at my desk a week later with a nurse telling me I had breast cancer. Invasive Ductal Carcinoma in all three areas. Crap. It’s in my lymph node is all I could think. That’s not great. It means those cancer cells could use the lymph and the bloodstream to travel to other areas. My specific cancer was being strongly driven by my estrogen and progesterone. All the things that make me a woman. Fabulous. I read all the statistics. 99% of breast cancer patients are alive five years later if the cancer is only localized. Having a positive lymph node puts the statistic at 86%. Crap. It’s in my stupid lymph node. I tried not to panic. But it was too late for that. My mind was off and running. I went home early from work and starting researching how to give myself the best possible chance. I met with my cousin’s husband, a naturopathic doctor. He suggested becoming basically vegan. Vegan? But I love chicken, and fish. Red meat I could take it or leave it. He said that occasional chicken or fish would be ok. You see the problem is I hate vegetables. Always have. Salads are fine, as long as thy are drenched in dressing. He suggested some supplements to prepare for chemotherapy. I left being afraid that everything I’d eaten had given me cancer. I was prepared to go on a plant-based diet and I did.

I met with my medical oncologist. A man about my age whose reviews online mentioned he was “funny”. He was very quirky and endearing on that first meeting. He wanted me to have surgery first so I could participate in a study. I shrugged and thought well if he thinks so, that’s what I’ll do. It wasn’t until I saw the surgeon the next day that she let me know that standard of care is chemotherapy first and the only reason I’d have surgery first is to see if I qualified for the study. I loved my surgeon. She was very thorough and listened to me. I left the office feeling uneasy. Why would the oncologist push me to go against standard of care, just for a study? Uh oh. Trust issues with my oncologist is not good. The surgeon said she’d take my case to tumor board. Tumor board is not some fun board game that doctors sit around and play. It is a meeting of departmental providers who put their heads together and come up with the best plan forward for unique cases. Apparently I was one of those unique cases due to the surgeon and medical oncologist having different ideas about my initial treatment. But before that, the surgeon ordered a breast MRI and a PET scan to see the scope of the disease.

I don’t want to hate on the breast MRI, but it was akin to a medieval torture device. They asked me what playlist I wanted for the duration of the test in which I’d be lying face down with my breasts deposited into two cavernous holes while my sternum and diaphragm took all the weight of my upper body. Oh, and you have to lie perfectly still. Oh, and your arms have to be over your head the entire time falling asleep achingly slowly as loud bangs and neenew neenew sounds echoed around you like some space age battle. I chose 80’s music as that genre was fine. I wasn’t attached to it, but I still enjoyed it. I didn’t want some form of music that I loved to be ruined for this experience. The exam began and it was exactly as described. Terrible. To top it off the music that initially began playing in my headphones was not music at all, but screaming and growling and dialogue. What fresh Hell is this? I wondered. Then the familiar strains of Michael Jackson’s Thriller began playing. I almost laughed, but then remembered I had to be still.

It sucked and ultimately gave me the delightful news that I have not one, but at least four lymph nodes highly suspicious for cancer. Super. PET scan was next. This was the big one. I remember the surgeon drawing for me on a piece of paper Stages 1 – 3 = Curable, Stage 4 = Incurable. Well crap. Let’s not be stage 4, I thought. Let’s look up the survival rates for stage 4. Damn, damn and double damn. No thank you.

In the days that followed I tried to stay positive. I was meditating. I was praying. I was barely stomaching vegetables and staying away from meat and processed foods. I was being told by my husband to stay off of the internet as my mind would not stop researching. It’s what we do. Nurses research. Nurses find out stats. Nurses drive themselves crazy because we are the world’s worst patients. We tell patients not to google their symptoms or speculate on disease outcome. But guess what I was doing until three and four in the morning? Bingo.

Again, I was at my desk at work when my MyChart app chimed that the PET scan results were in. Yes. Multifocal masses in my left breast consistent with cancer. Yes 4 lymph nodes in my left axilla consistent with cancer. I scanned through the different body systems until the very bottom. Uptake in glenoid process consistent with metastasis. Shit. Bone mets. The room melted away and I was sitting on what I always morbidly thought of as butcher paper on the surgeon’s exam table watching her lips move incurable they mouthed. I got up from my desk and ran to my car. Tears were already flowing down my face. Stage 4. The dismal five year survival rate flashed inside my mind like a Vegas sign. I called my husband, Jeff. He was in Arizona waiting for his dispatcher to find a load that would take him back home. Things were very incoherent during that phone call. I do remember wailing that it was in my bone. That I was going to die. And that I was sorry he married me not knowing he’d have to go through this. We’d been married 3 years. He replied, “I’m not going anywhere!” Yeah you’re stuck in Arizona, oh wait, you mean you’re sticking with me. I cried some more. He said, “Me holding your hand while you’re in a hospice bed dying, is NOT how this is going to go. That’s not our path.” I don’t know how he was so certain. I cynically thought, You’re not a medical professional. You don’t know.

Eventually I dried my eyes enough to drive myself home. My girls knew something was up. How do you tell your babies you are going to die? I couldn’t bring this to them. After making them go through a divorce, a remarriage, and two moves how could I present this to them? Like trash on a platter. No I wasn’t telling them. Not yet. Maybe not ever. I was weepy. I told them I was just sad about having breast cancer. It wasn’t a lie. I was going about my business, walking through life and then this insurmountable wall slammed down in front of me. I felt fear deep in my bowels. Something I can only liken to a primal fear, when prey has been spotted by a predator. My baby. My Brielle. She is 13 years old. She is a little woman and still such a child. A child that has never lost wanting to be in my presence always. We went for a walk. In her sensitive way she tried to cheer me up. I kept looking at her face. I don’t want to ever stop looking at her beautiful, innocent face. As the sun slid behind the Wasatch mountains I didn’t want to ever see her face transform into the grief that no child should ever have to feel. I didn’t want to leave her.

Tumor board, as it happened was scheduled the next day. I had my family and my friends waiting to hear about the results of my PET Scan. I lied and told them I hadn’t received them yet. I didn’t want to serve them up that trash platter, remember? I had an insider in the meeting. My nurse friend, who was now a nurse practitioner on the breast team. She texted me first thing that morning letting me know they were talking about my case. My cancer center nurse friends were the only ones besides my husband I had told about the bone mets. She texted me they were done talking about my case and to expect a call from my surgeon. She told me they had a plan and that I was in good hands.

I stepped outside to take the phone call. I was home. I had made the very wise decision to work from home that day. My surgeon apologized for not calling me sooner about the PET results. She said normally stage 4 cancer is incurable, but in certain rare instances…like when there is only a singular area of metastasis to an area outside of the breast, something called oligometastasis they will sometimes treat with “curative intent”. My heart started beating again. Curative is a great word I decided. She explained the “consensus” is that I will go on hormone blockers and something called a CK 4/6 inhibitor to stop my disease progression. If my cancer shrinks or stops growing they will then do surgery and possibly radiation. I felt hopeful. I hoped their plan would put the cancer into remission. I told my family and my friends the news. I tried to put a brave smile on my face as I said the words stage 4. I warned them not to look at statistics. I’m sure they ignored my advice.

So then I put on my nurse hat again. I researched on stage 4 oligometastasis breast cancer. I googled curative intent. I found journal articles and studies. It seemed having oligometastasis is indeed a rare subtype of stage 4 breast cancer. So rare that there are not a lot of cases to go off of for treatment plans. More recently some doctors have treated with curative intent, meaning they throw everything they have at the disease in its initially treatment naive state. Chemotherapy, surgery, radiation then hormone blockers and CK 4/6 inhibitors. Oh no. This is what curative intent truly means I thought to myself. I’ve found a glitch in the matrix so to speak. Oh well. I thought. I’ll wait until I see my medical oncologist to discuss this.

I saw my medical oncologist. Alone this time, as Jeff was once again trying to provide for our family on this difficult new business venture we stupidly launched before I had to go off and get cancer. I looked the oncologist in the eye as he explained to me that it’s a bad idea to “go toe to toe” with the disease (meaning chemotherapy), how he suggests that we just “dance with the disease”. Everything inside of me was recoiling from this plan. I don’t want to dance with any disease, but especially this one as it has a high chance of killing me. I asked about chemotherapy and surgery and radiation. He seemed a bit flustered. “Maybe if disease progression stops we can twist the surgeon’s arm to operate, but it’s better to just live your life and have a higher quality of life.” He went on to say I could keep my hair, I wouldn’t be sick from chemo or hideously disfigured by surgery. I wouldn’t suffer through radiation. As I got teary eyed with frustration he finished with, “We are going to try to get you to see your youngest graduate, Ms. Marvian”. 5 years. He’s telling me if I’m lucky I have five years. I couldn’t speak. It was a combination of shock, grief, and frustration with this man. But what about curative intent? I wanted to ask. But I didn’t. The thing about nurses is we are trained to respect doctors. To respect the extra training and expertise they have beyond what we get in nursing school. I thought to myself. He’s the doctor. I guess he’d know.

I left that day feeling like he had placed an hourglass around my neck. 5 years. Like sands through the hourglass, so are the days of our lives. Cue the dramatic music. Every look from my kids, every touch from my husband I cherished. I morbidly wondered about how it would end. Would there be pain? Yes. Would I find a deeper meaning? Maybe. Would my children be ok without me? Eventually. Would my husband be ok without me? I didn’t know. He’s strong and he’s lost many people in his life that he’s loved. But our love is so beautiful. So strong. Surely he’d be ok. But what about me? How am I going to live out the rest of my life being ok with knowing that the disease, the cancer will slowly spread until my organs and my bones are burdened enough to just quit? I cried. A lot. I got my first Zoladex injection. It would shut down my ovaries from making the hormones that were driving my cancer.

My mom called me one day while I was out grocery shopping with Brielle and her friend. I sent Brielle and Jazzy into Wingstop so I could talk openly. My mom was passionate, “Denise, this is your life. You need a second opinion.” She’d been talking to my uncle who had had late stage cancer several years ago. He had went to cancer centers across the states until he found a doctor that would treat him with the regimen he hoped would cure his disease. I patiently listened but inside I thought, I don’t have the money for that. I trust this cancer center. I worked there. How different could another cancer center’s treatment plan be for me? I’m stage 4. I politely told her that I couldn’t just be flying across the country. She said, “Uncle John suggests you see MD Anderson Cancer Center in Houston. They’re the best.” I told her I’d think about it. I hung up the phone and thought Mothers! The nerve of this woman. Questioning my doctor. But the more I thought about it, the more bothered I became. I went back into the note the oncologist had written from our last visit. Decided not to treat with curative intent… What? WHAT?

Why did the surgeon present the tumor board’s decision as curative intent? Why are the drugs they are giving me the same as if I had widespread metastatic disease? Why did she say curative intent? But the oncologist wrote that we are not treating with curative intent? All the doubts that had been niggling at me surfaced and I couldn’t ignore them anymore. After all, like that wonderful meddling woman that is my mother said – THIS IS MY LIFE!

I wrote a message to both my surgeon and my oncologist raising my concerns with what I felt was mixed messaging. The oncologist’s nurse wrote back that the doctor would call me at the end of the day to discuss. He did. And he was annoyed. “Ms. Marvian, going toe to toe with the disease does not yield good dividends.” I brought up curative intent and the tumor board’s decision. “Ms. Marvian, the surgeon must have told you that before the PET scan results.” No. She didn’t. He became more aggravated. He hung up shortly afterward saying he had to get to a meeting. I sat in my car and thought…this isn’t right. I’m going to get a second opinion. I also checked with my nurse friend who had been at tumor board. She said she took notes and had written down the words “curative intent”. I couldn’t trust my oncologist. Whether he meant to or not, he gaslit me.

I called MD Anderson.

Weeks later we arrived in Houston. I was ready to just listen to this doctor. Dr. Iheme was her name. I didn’t want to give anything away by voicing my hopes. I just wanted to know…truly, is my current treatment plan how the leading cancer center in the nation would treat me?

I got an inkling my fears were correct as her physicians assistant went over my history with me. “And you have just the one mets to the bone, correct?” She asked her eyes narrowing. Yes. “But they’re treating you with hormone blockers and a tumor inhibitor?” Yes. “And you have just one met?” Yes I replied again. “I’m going to go get the doctor now.” She said and left the room.

Dr. Iheme came into the room with the same air of bafflement. She also reiterated that I have one met to my bone. Then she handed me a paper that had chemotherapy written down. “You’re 42, not 62, I do not understand why your doctor is treating you so conservatively. We would treat with curative intent. Chemotherapy, then surgery, then radiation and after that hormone blockers or removing your ovaries and a tumor inhibitor for 10 years. Let’s throw everything we have at it.” I felt the hourglass slip from my neck and shatter.

I told my husband that day, “I’m never going to let anyone ever again tell me how many years I have left to live. I don’t care who it is!”

That’s enough of the story for now. I just needed to get it out. To be continued….