My Battle with Metastatic Breast Cancer – the condensed version

My journey with cancer began in 1996 at the age of 31.
(mastectomies, adriamycin, Cytoxan, FU-5, reconstruction)
In 2001, I was put on antibiotics for 6 months. My doctor didn’t believe the large lump above my left collarbone was cancer, because it began in my right breast. Finally a biopsy was performed in 2002. The surgeon sewed me up and told my family it had metastasized and there was nothing he could do. My oncologist luckily thought differently.
Herceptin was new on the market and I was HER2+ and hormone -.
(Taxotere, Zometa, Herceptin, 30 days of radiation)
I stopped Taxotere after a year and continued Zometa for a few years, and Herceptin until 2013. I consulted three oncologists, including one from Moffitt Cancer in Tampa. All suggested I stop and was deemed cancer free. There are no studies to support information on stopping Herceptin so they merely guessed. Within 6 months my right breast swelled almost twice the size almost overnight. I went to the ER. They did nothing and told me to consult my oncologist. I had a PET scan but didn’t have a follow up appointment. I called the office for results and was told by the nurse my scan was fine. I went for my check up months later and found out my scan was actually not clear. I immediately called Moffitt.
(needle biopsy, set up for surgery to drain excess fluid, replace 20 year old implants)
I was told after surgery they drained over a liter of “chunky” blood out of my right breast. There was cancer throughout the blood and inside the capsule my body made around the implant, and behind my breastbone. My Moffitt surgeons said they have never seen anything like this.
(Taxotere for 6 months, Herceptin, Perjeta for life)
So now, 22 years after my first diagnosis, 15 years of Herceptin, and 6 years on Perjeta,
I read my latest PET scan which shows no active metastatic disease. My cancer has not shown on scans except once in 2013 where a slight glow was seen behind my breastbone. In 2002 I was on Zometa because my oncologist suspected cancer in my bones, but stopped after a few years.
2018 PET scan shows: “scattered sclerotic osseous lesions greatest within the sacrum, femurs and pelvic bones.”
How do I know if there is live cancer if it has never shown up on a scan? It had to be there if there are lesions of past cancer.
“The liver is diffusely hypodense consistent with hepatic steatosis.”
I know, fatty liver disease. I’ve had small spots show up on past scans but it’s gotten worse. I’m a bit concerned because cancer can cause fatty liver.
“Atelectasis in lung bases.”
Also known as sticky lung. Common, but also concerning to me. I called Moffitt for a second opinion. They no longer take my insurance! I get another PET scan in January.
I’m a fighter, but having Hashimoto’s on top of all this … I’m tired… really tired.

Survivor, warrior and worn down

SWwd

2 thoughts on “My Battle with Metastatic Breast Cancer – the condensed version

  1. I don’t understand how they can make you wait months or years to have stuff done. It’s scary how some medicine is “safe” and years later you hear about bad stuff 😦

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