Metastatic Breast Cancer, the kind that kills

I still clearly remember that my friend and I were in the library,  that warm and humid day in the coastal city of Karachi. After our lecture, we had found refuge in basement of the air-conditioned library, feeling very lucky to be students of the Aga Khan University. We were sitting on the floor all the way in the corner right next to the tall library shelves partly occupied with old editions of medical periodicals. The musty old-book smell surrounded us. We were both planning to read together the most recent pathology class lecture about “Breast Cancer”.
We started reading it aloud ” in the inside volume” taking turns , from the Robbins, Kumar and Cotran Text of Pathology , an eternal favorite among medical students. Staring at the glossy pictures of the mutated cells, learning about the aggressive and non aggressive types of cell, and all the different pathologies of breast cancer. Ductal, lobular, DCIS and the inflammatory. On occasion we would get distracted with other students passing by.
We were med students not yet exposed to the clinical clerkships. We were both 2 years out of high school and hardly had the maturity needed to understand the seriousness of a cancer diagnosis.
At that time for us, Breast cancer was just another illness we had to learn and memorize to get through medical school. Today 20 years out of medical school , I understand it viscerally, I am a breast cancer survivor . I understand the meaning of the tumor grade and the stage and the meaning of positive margins, all decided on the basis of pathology of the tumor.
We were both trying to memorize the primary sites breast cancer spreads to, I read, “Lungs, Liver, Bone, Brain”. As a student it was fascinating to learn the power of a mutated cell as a patient of course its horrifying. The ability of a cancer cell to evade treatment and hide, only to start replicating in another organ , one fine day out of the blue. Breast Cancer is no less sneaky . The most common sites where breast cancer can find a second home are liver, lungs, bones and the brain. Essentially a cancer arising in breast could be found in other organs of the body by a process called metastasis. Doctors call metastatic foci, “Mets”.
Medical students get through medical school making mnemonics. We memorize most of the anatomy by making words up that will help us remember sequences or location of various nerves and other anatomical structures.
My friend blurted “LBBL”. Not the best mnemonic but it had a rhythm to it. “LBBL” it was, lung , bone, liver, brain. It didn’t sound great that a cancer that starts in breast , if advanced, could take root in such vital organs of the body but hey remembering  “LBBL” would get us through the exams so we moved on to the next chapter in the pathology book.
I never forgot that mnemonic, for 20 years.

One day then, I was told, you have breast cancer. An awkwardly crafted mnemonic rang in my brain, “LBBL”. My heart sank and I felt short of breath. I , at that moment, envied every single woman who was diagnosed with breast cancer but hadn’t studied pathology or if she did, had forgotten that pathology lecture . It rang again, “LBBL”. I knew more than I wanted.
I recalled how I was having unexplained back pain the week before. My heart sank further. I recalled the mild bout of indigestion which could have been the liver acting up. I had history of headaches, the most common symptom of brain metastasis. I couldn’t breathe very likely due to anxiety but worried that may be my lungs are affected.
Being diagnosed with metastatic disease can be horrifying for an individual. It usually means that there is no hope for remission of cancer. Sometimes they even for-go chemotherapy because the goal of treatment is to slow progression, not aim for remission. Treatments are available to slow the disease progression but often they stop working and medication needs to be switched. Essentially at times it really is “medical crap shoot”.
When I was first diagnosed with cancer of the breast , I had needed to go through “metastatic work up”, a PET scan, A CT abdomen and a bone scan. Pet scan and Bone scan showed no evidence of cancer. My CT abdomen did, however, show a “spot” in the liver. The cold, fact-filled report suggested that a less than 5 mm spot on my liver could throw me into the Stage four metastatic category and I could be that 5 percent of women that start the breast cancer journey at Stage 4.
The radiologist suggested that my liver be visualized with an MRI.

That day I did fall apart. The average 2 year life span danced in front of my eyes, as I heard my two little kids in the other room fighting over a toy. That day I sobbed, that day I fell apart, that day I saw my mortality in a way I had never seen before.

I don’t remember how or whether I slept that night until next morning when I had my MRI of the liver. I was alive but felt dead inside. I tried to stay busy until the phone rang later that evening that the “spot” was an artifact and the liver had no evidence of cancer in it. Relieved can’t even begin to define what I felt after hearing the report.
Life was kind to me and I had dodged the bullet , not everyone is that lucky.  In those 12 hours, however,  I realized what it meant for others to live with Metastatic Breast Cancer. Metastasis means cancer that originally started in breast is now in other locations outside of the breasts.
Metastatic Breast Cancer is a disease that kills on an average 108 American women every day. There is no cure, just ways to slow it down. I think about that number every day, 30% of those diagnosed with local disease( just in the breast and lymph nodes) will later be diagnosed with metastatic disease. I pray to be part of the 70 percent that make it through with pangs of guilt for I know personally those who are in that unfortunate category , the 30%, the ones that are brave every day. Majority of deaths that occur due to breast cancer are due to metastatic breast cancer.
The Lifers, Metsters, Metavivors, those with Stage 4 or Metastatic Cancer are the incredible women, who get up every day, with hope and grace and meet the challenges of life holding on to the optimism that they will find a cure. They are my heroes. They are the true warriors, the true fighters.

(This post is dedicated to a very special friend whose strength and grace with metastatic breast cancer is the source of my strength).

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6 thoughts on “Metastatic Breast Cancer, the kind that kills

  1. I can only imagine what it would be like for you, as a doctor, knowing what you learned in med school, to be experiencing breast cancer. I didn’t really quite “get” the whole mets discussion until I was almost through with my chemo and my oncologist gently told me that there was no test to determine if my cancer was completely gone, that microscopic teeny cells could have gone through my blood and we would never notice it until I had noticeable symptoms (which even I knew that once I had noticeable symptoms it would be very far advanced). BUT. We soldier on, don’t we. We take each day as the gift it is, and keep our fingers crossed that we stay NED. I appreciate your blog, it’s very moving. xo

  2. Great post! I remember how frightened I was when I got my PET scan. By the time I got out of the machine, I had a message from both my breast surgeon and her secretary requesting an earlier appointment and to call them back asap. I looked at my mom and said, “Get ready. This is the moment we find out that I’m going to die.” It turns out that my PET scan was clear and that my surgeon just had an earlier opening. But the fear…I still have it. It’s crippling.

  3. I always wonder if having too much knowledge about breast cancer can make us more nervous. I personally would rather know than not know but coming from a medical professional like yourself, you know even more. I remember shaking during the initial days of my diagnosis and I didn’t know as much as you did. My problem was I thought once diagnosed with cancer, that was it. So this level of ignorance didn’t help me feel any better.

    I had a liver MRI last Dec. and I hated the experience. I am glad we both had good reports.

    I never had a pet scan and often wonder if I should have. My Onco didn’t think I needed one. I almost had one done early this year because of my paranoia. I changed my mind.

  4. I pray every day #or you Uzma and God’s blessings to you and the other brave survivors. I know some day this could be me as well and pray that I can heave those faith strength and vulnerability for the journey.

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