My Story of Living with Lung Metastases
Do you live with lung metastases? Thirty percent of breast cancer survivors go on to become metastatic, meaning the breast cancer has metastasized (spread) to another part of the body.1 A commonplace for metastases is in the lungs.
According to www.breastcancer.org, for many people, lung metastasis does not cause symptoms. But for those who do experience symptoms, they may include2:
- pain or discomfort in the lung
- shortness of breath
- persistent cough
- coughing up blood and mucus
Symptoms long before diagnosis
In my case, I presented with symptoms long before my diagnosis. It was in November 2017, following chemotherapy and mastectomy as a stage II patient, I received radiation to my chest wall. This was as a preventative measure; to help prevent any rogue breast cancer cells from metastasizing.
The University of Michigan Health, says that the common side effects of radiation therapy are3:
- feeling very tired
- skin changes in the area treated with radiation - the skin may be red, dry, and sore
- swelling and heaviness in your breast
While I did experience these, I also developed a persistent cough after a few months. I was told that happens sometimes to patients as a result of lung inflammation from radiation. Still, the months turned into a year, and I felt like something was not right.
Lung nodule in my chest
It was in November 2018 that a chest x-ray showed a lung nodule on my chest x-ray. I was told these are very common, but given my high risk of recurrence as a triple-negative breast cancer survivor, they would monitor it closely.
They gave me an inhaler, but the cough continued. All the while, my hair was back in full swing, I was newly divorced, bought my own little house for my children and me, and was hired to teach middle school Social Studies. I couldn't possibly have lung mets. I was just starting over again after cancer.
Now tripling in size
It was in April 2019 that I had another chest x-ray. It showed my lung nodule had tripled in size since November. My doctor told me in the break room as I was making copies, and tears ran down my face. I knew I was metastatic. I just knew it.
Breast cancer in my left lung
A biopsy soon confirmed my suspicions. It was breast cancer in my left lung. I learned, after the fact, that on rare occasions biopsies can yield a different result than your actual subtype. This biopsy showed I was 70% estrogen receptor-positive (ER+), rather than triple-negative (TN) as I was when I was an early stager. While my team thought this was odd, even my second opinion consult doctor, everyone decided to treat me as such, and I was given Ibrance and Letrozole.
Over the next two months, my cough worsened significantly. Speaking in my classroom all day felt as if I was suffocating. My legs and back ached.
PET scan showing the "innumerable" spread
They decided to scan me early, and in August 2019 a PET scan showed that the cancer had grown and spread. There were now "innumerable" lymph nodes surrounding my airway, and six bones. The nodule also grew in size. After a second biopsy, this time of lymph nodes, my subtype came back as 1% ER+...I was triple-negative after all. It was no wonder the treatment didn't work.
On to the next treatment
In September 2019 I started IV chemotherapy; Carboplatin and Gemzar. My side effects including nausea, vomiting, and extreme fatigue. I was tired all of the time. I did notice, however, my cough was decreasing. The pressure in my chest was lifting. My bones were even less achy and bruised-feeling. Still, I could no longer teach and be a single parent to three young children, the youngest two years old, while being at the hospital so frequently for chemotherapy. By mid-October 2019, I was retired at age 35.
Learning to trust my body
It was right after Christmas 2019 when we scanned again. My "innumerable" lymph nodes-resolved! The six bone mets-resolved! Even my lung nodule shrank down. This experience early in my metastatic life made me realize that I could feel when the chemotherapy is not working, and also feel when it is. I learned to trust my body, and, in particular, my cough.
I continued to feel well at this time, and the chemotherapy side effects got better. Soon I noticed something amazing...I barely even coughed anymore!
The importance of scanning early and often
During the summer of 2020, I began coughing again. Becoming suspect, we scanned early. It showed the mass in my lung grew to the size of a grape and I had some more lymph node involvement. It was time for a new treatment. In September 2020, I started Abraxane chemotherapy and Tecentriq immunotherapy. My cough continued to worsen. I had chronic pneumonia. Breathing became increasingly difficult.
The cancer continued to progress
We scanned in December 2020, after nine infusions accompanied by painful cold capping, to discover that the cancer in my lung had grown to the size of a tangerine, my lymph nodes were bigger, and new ones were involved. The lung mass even closed my airway. My treatment was a flop. In the month leading up to that, I was hospitalized twice; between the chemotherapy, immunotherapy, and cancer progression, my body was weakened.
Spread to the brain
It was at this time we found that the cancer had also metastasized into my brain. I had four small metastases which would be radiated. It was decided that I would have a bronchoscopy to re-biopsy. This would confirm my subtype, as well as check for genetic mutations.
My biopsy confirmed I was still triple-negative, PDL1+ (meaning immunotherapy could work), and had eleven genetic mutations. This could open the door for targeted therapy in the future. It also showed that there was breast cancer growing inside of my lung, which they lasered off.
Affecting my day to day
In January 2021, I began what was being hailed as the wonder drug...Trodelvy. It was recently FDA-approved, and people were flocking to get it. I was sure it works. As my hair fell back out before my eyes, my cough somehow managed to get worse. I could barely speak anymore. Even reading bedtime stories to my children was impossible. I would cough so hard, I'd vomit. My ribs ached. I feared the wonder drug wasn't working for me.
More progression with each scan
It was in March 2021 that we scanned again. More progression. They took me off of Trodelvy and started Eribulin chemotherapy. I was highly skeptical it would work. My hair, which took three-and-a-half years to grow back and just two infusions to lose, began to sprout. My cough was as bad as ever. At this time, I decided it was wise to line up a second opinion. I was sick of coughing. Sick of vomiting. Massive amounts of progression with each scan, and my body feeling sick from adjusting to so many new chemotherapies. I did not feel confident that Eribulin would work, and was scared I would die soon if this was not under control.
It was relieving to secure a consult at Memorial Sloan-Kettering with a triple-negative expert, Dr. Linda Vahdat. I was told by others with triple-negative disease that she is known for "thinking outside of the box", and I felt it was time for that sort of thinking.
Quality of life completely diminished
By May 2021, a week before my consult with Dr. Vahdat, we re-scanned my brain and body. My brain had two new metastases. The lung mass was the now the size of a "small, personal watermelon". In the same lung, there was a cluster of four-six "pea-sized" tumors. Over in my right lung, there was one "pea". Next to my liver, a cancerous node. More could be found behind my heart and beside my spine. They pressed on my nerves and caused me excruciating pain daily. Where the large mass in my brain lived-technically it was in between my skull and brain-my forehead ached. My cough made it hard to breathe, and my quality of life was diminished.
More immunotherapy and more chemotherapy
My oncologist wanted to put me on Keytruda immunotherapy and more chemo...Navelbine. I was worried about more chemo with my body being so fragile. Earlier in the spring, I had also been hospitalized with neutropenia. My immune system was in the zeroes, and I felt so sick I thought I was dying. I was not opposed to more chemo...but only if it would actually work. When I asked her what my life expectancy was if my new treatment did not work, she replied, "It can be measured in months, not years, if we don't find a home run". She added that my left lung was so ridden with cancer it was basically non-functional at this point.
Here is to hoping for good news
I met with Dr. Vahdat, and she decided the best course of action would be Keytruda immunotherapy, but instead of adding chemotherapy, she would add a PARP inhibitor called Lynparza. When looking at my genetic mutations, Dr. Vahdat found one called JAK-3. Lynparza targets JAK-3. For the first time as a stage IV patient, I would have targeted therapy instead of chemotherapy. I could not believe it. While my left lung doesn't operate too well at the moment, Dr. Vahdat did point out that my right lung still functions well. She felt confident that it would continue to work well as we figure out the medicinal aspect of my care. I have also had my new brain metastases radiated with Gamma Knife, and the pressure in my forehead has gone away.
My new treatment starts this week, and we scan again at the end of summer 2021, right before my 38th birthday. Let's hope that after a year I finally have some good news to celebrate!
Do you have lung metastases?
Did you, or do you, have symptoms?
What were they?
Does anything help or hurt your symptoms?
Please share your lung metastases experience with our aBC family!
Editor’s Note: We are extremely saddened to share that on Friday, October 29, 2021, Danielle Thurston passed away. We know that Danielle’s voice and perspective continue to reach so many. She will be deeply missed.
Do you find it easy to advocate for yourself?