SURVIVOR ~ Breast Cancer Stage IV

Cancer is something that happens to you while you are busy doing other things. Very few cancers cause any pain at all. If they do, it's probably too late. If I've learned one lesson, it is that it is important for everyone to have regular checkups and to request specific tests if you are at risk for any type of cancer, even at an early age. The second thing I have learned is that hearing you have cancer is bad, but hearing it has metastasized is worse.

I had a baseline mammogram at age 40, the recommended age. Two years later I noticed an inverted nipple and recall reading that on a doctor's wall somewhere as a sign. Still I didn't do a BSE. I had been under a lot of stress for the previous 2 years and I was not taking care of myself or putting myself first.

I read in one of Dr. Bernie Siegal's books that the majority of his cancer patients had given up the will to live shortly before their cancer diagnosis and had suffered great periods of stress for the prior 6 to 18 months. That was me to a T. I remember one day in November 1991, sitting on the edge of my bed before taking off for work, feeling as though the life had literally drained out of me. I said to myself that I was done, that I had "blown it" -- meaning that I felt I had ruined my life and my son's with some bad choices. I literally said to myself, "I am dead, I am gone. This was it, this was my life." Then my hand went right to the spot as if it knew where the lump was and there was a mother of a lump. Very hard, unmovable. Felt like half a lemon cut sideways.

I kept my mouth shut through the holidays, but made an appointment to see a radiologist on Dec. 26th. When I explained my symptoms to him, he opened his office for me on a Saturday morning. He showed me an X-ray that looked like a giant starfish had landed on the top of my breast. In the center it was solid and its arms reached out like a star.

This doctor told me that my case was rather urgent and that normally he wouldn't say so but he was pretty sure he was looking at a malignancy, and in my case he would make an exception! He gave me the name of a surgeon that he said was "the best." And he said, "You need the best."

So I go see this surgeon two days later and he checks me out then has me wait in a room where they keep a box of tissues, a bird of paradise arrangement and no magazines. I think to myself that this must be the "bad news room" and when he returned he told me that he was 99.8% sure that he was looking at a malignancy and that he recommended I have surgery then and there if the biopsy was positive. No time to waste.

I had a modified radical mastectomy on Jan. 3, 1992. I was classified as Stage IIIB, tumor size 5x2 cm with spread to 5 out of 20 lymph nodes. I read all the books and saw that I was not a good candidate for living beyond 5 years. But I did.

I went through triple dose chemotherapy of Adriamycin, Cytoxin and 5FU and then 7 years of Tamoxifen. These were good years as far as getting my priorities straight. I spent most of my time with my son who was only 9 when all this started. I had 8 years of "remission." I was taken off Tamoxifen and on nothing for a year. During that year I underwent breast reconstruction because I thought I was "safe."

Something compelled me to "go to the internet" in June 1999, and I started working on a breast cancer site in my city's public library. This would be the first of three events that I feel were guided by angels, because ever since then I have been devoting myself to breast cancer education and research. I did finally get out of the library and got my own computer where I spend most of my time since I am now on long-term disability.

In July 1999, a routine X-Ray showed a sliver of something on a rib in the back. Meanwhile oncologist and radiologist "watched it." Watched it until it was 7x2 cm. At that time, November 1999, it was biopsied, but it was reported as "benign." I was concerned that I had this large lump in my back, but the test said "benign" so I went about my business. My situation was exacerbated by the fact that I am treated for depression and often I just don't take action.

This was the case when I forgot to go in for a two-month check-up. It wasn't until 8 months later that I went back to the doctor. What got me there was a bunch of lumps that were forming on my windpipe. First one, then two, till there were 5, just in a couple of days. I went to the doctor and he said he wasn't concerned about them, he was concerned about the tumor in my back which according to the X-rays he did in his office, had grown. I believe it was God's work putting those lumps on my throat which mysteriously disappeared the following day, but they got me to the doctor.

I went in for another biopsy, late September 2000. This time it was found to be positive for metastatic breast cancer. It was 9x4cm and coming off a rib, in the pleural sac next to my lung. I started a hormonal therapy of Arimidex. I believe I should have been on something stronger, but this is the standard first-line protocol.

With the new diagnosis I knew this meant more trips to the doctor, hospital and labs, so I got a new one closer to home. I am fortunate that all of my doctors have been on the Top Ten lists in their field in my area. My new oncologist kept me on Arimidex and added Aredia. My first scans in December 2000 showed mets to the spine. Four months later, I have two new tumors near the original one on my left rib, which I can actually feel pushing against my back or lung. It's getting very uncomfortable and has not shrunk. Surgery I have been told is out of the question. Now I am starting weekly Taxotere treatments. From what I have read, I could live 2 years, 6 years, more or less. Who knows? Mine is considered "slow-progression." I have a "spot" on my liver the lab reports keep calling a "suspected hemangioma" and it worries me that they don't know for sure.

Having Stage IV is the ultimate "Survivor" game -- you hope to contain the mets to the bones for as long as you can, maybe even shrinking them. You want to outsmark the cancer cells before they decide to set up residence in your lungs, liver or brain. Even so, I have friends who have lived with brain and liver mets for years. It's a crap shoot. Will a new drug come along in time?

I devote my time to this breast cancer site, research for ALL cancers and enjoying the life I have while I have it. I hope to hang in there and be "chronically" ill until a cure is found and am fighting every step of the way the label "terminal." I supplement my diet with herbs, exercise and heat therapy. I am looking for a Qi Gong class as well. I'm doing everything I can!

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