Sunday, November 2, 2008

"You Have A Very Rare Cancer"

My story is a bit complicated. The best way to summarize the first 7 years of my journey might be to publish some excerpts from a speech I gave May 2007, at a Relay For Life event.

In 1998 I noticed a dull, constant soreness in my left breast and went for my first mammogram at the age of 38. No mass was found, and I was told that I shouldn’t worry about it because “pain is not a symptom of breast cancer.” A year or so later I noticed a lump in that same area, which was still painful. As it grew, I went for another mammogram, was sent for a biopsy, and was diagnosed with a very rare form of breast cancer called Adenoid Cystic Carcinoma of the Breast, or ACCB. This is a cancer that usually attacks glands in the head and neck, and because there are also glands in the breast, it can occur there too. When it does, it’s very slow growing and the prognosis is excellent. But few doctors have seen ACCB because it only occurs in less than .1% of all breast cancers. It’s even more rare for this disease to metastasize, which “rarely, if ever” happens, according to the articles I found then.

Fast forward 6 years, after a successful lumpectomy, 8 rounds of chemotherapy, 35 radiation treatments and being declared “cancer free,” to October of 2006. I went for my first chest CT scan and was told that I had 10 lung nodules sprayed across both lungs. Most were small, but one was large enough to sound the alarm bell. After a PET/CT scan and a lung biopsy that was inconclusive, I found myself planning to go back on the operating table, this time to remove part of my left lung. When I woke up from the surgery, I was told that it was indeed metastasis from the cancer that I had 6 years ago.

For about a week and a half I felt caught between shock, denial and mental free fall. I felt like I was living inside a Picasso painting – everything that resembled something familiar was distorted and frozen in time. I knew that metastasis meant that chemotherapy would become a way of life for the time that I had left. Then my oncologist called to tell me that, after consulting with several other doctors and reviewing the literature, he learned that my disease doesn’t respond to any known chemotherapy. I could hardly supress my relief. My biggest medical fear has never been cancer, it's been chemotherapy. I started to step out of the Picasso painting. When I asked him about treatment, he said, “there is no treatment – at least that we know of right now.” The painting got closer. He said that if the nodules grow to the point where they obstruct my breathing, we’ll operate again and remove what we can.

So I stopped planning my memorial service and started researching my disease. The largest and most comprehensive study of ACCB reviewed the literature from 1945 to 2002 worldwide, and found only 182 cases. Of those, metastasis occurred in only 14 cases (7.7% of the less than .1%) Instead of falling back into the painting, a new one presented itself – a blank canvas with a great big question mark....

The good news is that my cancer grows very, very slowly, and goes into periods of dormancy. I have never had any symptoms, as this was discovered by accident. The bad news is that no one is researching my disease because there are so few of us to study.... After exhaustive research, I decided to tackle this myself. I set out on a quest for alternative treatments and implemented a number of lifestyle changes. I still have 7 nodules in my lungs, but they haven’t grown since they were discovered, and I have never felt better, physically or mentally.

Cancer brings life into laser sharp focus. Priorities become clear, as well as the realization that the present moment is all we ever have. Every one of us has a blank canvas with a great big question mark on it. As we fill it in, and as it is sometimes filled in for us, we celebrate life, count our blessings, and control what we can....

In May 2008, a year after I wrote that speech, I learned that all of my remaining tumors were growing. Although they were still relatively small, some had doubled in size.

This put me back into research mode, coupled with numerous consultations with medical doctors from both conventional and non-conventional practices. And my journey took a whole new turn.



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