Living with Stage IV
Only a couple of days until the pink madness of October storms us. I dislike virtually everything about "Breast Cancer Awareness Month" (although, like most New Englanders, I love October), but I especially dislike the impression that breast cancer has been mostly conquered. All you have to do, we are told, is have an annual mammogram and early detection will insure a cure. Sadly, not true.
This essay by a woman who attends my support group for women with Stage IV cancer is a reminder of another reality. Thank you, Pamela, for allowing me to share this.
LIVING WITH STAGE IV BREAST CANCER
By Pamela Lipton
Everyone knows that October is Breast Cancer Awareness Month. At least anyone who has breast cancer knows it -- or anyone who has had it, for that matter, or anyone who has loved someone who has had it knows. You can't help but be reminded of it with all of the pink ribbons, the walks, the runs, the valiant efforts to keep attention on this devastating disease that affects so many women and men in our community. This year, however, October is particularly special for breast cancer patients and survivors in Newton because this year Mayor Cohen has declared that October 13 is Metastatic Breast Cancer Awareness Day in our city.
It is all the more special to me because I have had metastatic breast cancer for over 3 ½ years now. I was originally diagnosed with breast cancer when I was 44 following a routine annual mammogram. At that time, my doctors thought that I had a small cancer -- a Stage 1 tumor that was surely treatable. A lumpectomy, however, revealed that the cancer was larger than they had thought and that I had some micro-metastases - tiny microscopic bits of cancer - in two of my lymph nodes. This now placed me at Stage 2B and I had to have a second surgery.
About two weeks after that surgery, I met with my oncologist to talk about my up-coming chemotherapy. She said that she wanted to do a CT scan before starting chemo to "make sure the cancer hadn't spread." I was stunned that this was even a possibility. Then, on March 31, 2005, 2 months after my original diagnosis, my oncologist called me on the phone and told me that the cancer was all over my liver. I asked her how long I had, and she replied, "Three years. Maybe 15. But you'll definitely die of breast cancer."
Metastatic breast cancer. Countless metastases all over your liver. It sounds like a death sentence when you hear those words and it certainly sounded that way to me that day. A social worker who worked with my oncologist called me right after I got off the phone and told me that I should not start planning my funeral, that a lot of women with Stage 4 Breast Cancer live full, meaningful lives, but it's taken me a long time to absorb and believe in that. I now know that that is definitely possible but it is certainly not always the case. Unlike a lot of women with metastases, I have been unusually lucky -- thusfar.
I still never quite got along with that first oncologist of mine, who wouldn't give me more aggressive chemo, no matter how much I asked, begged for it. So, I ended up going for a second opinion to another oncologist. This new doctor told me, "If I were your age and I had your disease, I would want to go for broke." She put me on the big boys of chemo that most doctors wouldn't go near me with because of my Stage 4 status, and I pretty much sailed though the treatment. In January 2006, following 10 months of chemotherapy, my PET/CT scan showed only scars on my liver and all of my many, many scans that I've had since that time have continued to show the same.
Nevertheless, breast cancer that has metastasized is incurable - we all know that. Even if you're as fortunate as I have been to achieve a complete remission with no evidence of disease for years, it can come back at any time. My medical team watches me like a hawk, and, as a result, I visit the hospital at least once a month whether it's for a benign port flush or a bone-strengthening infusion or for one of the multitude of scans, MRIs, mammograms and tests that define the ebb and flow of my life with metastases. Those now routine scans never fail to provoke high anxiety, no matter how well I feel, no matter how good my days have been. I am well aware that I'll have to deal with cancer for the rest of my life, and, as a result, I celebrate my birthdays with intense joy and gratitude for every day that I have.
But the facts are sobering. The American Cancer Society reports that 180,000 women and men will be diagnosed with breast cancer this year alone, and 1/3 of those patients will learn that they have metastatic disease. There are 150,000 of us in this country living with this advanced form of cancer. The majority of us live for only 2 or 3 years following diagnosis, most of us on continuous treatments, trying our best to extend our lives for as long as we can. And the most simple, deadliest statistic of all: breast cancer claims the lives of 100 women and men a day in the US. For all of the pink ribbons and the women you know who have "beaten" breast cancer, there is no cure for it yet. Acknowledging those of us who live with that fact day in and day out should remind us of how much more work is calling out to be done to make breast cancer history and to eradicate it, once and for all.
Bio: Formerly an Associate TV Producer at WGBH, Pamela Lipton lives in Newton and is an active breast cancer advocate.