I am a woman with metastatic breast cancer. My cancer was first detected as inflammatory breast cancer nearly 4.5 years ago, although I’ve also had invasive breast cancer, Paget’s disease, and recurrences as the cancer spread to lymph nodes under my left arm (2010), to lymph nodes in the center of my chest (New Year’s 2011), and then to my bones in March 2011. Metastatic breast cancer means that cancer cells have spread from my right breast to other sites, made themselves at home, and reproduced so many times that now each cell has become a mass of cells detectable by today’s x-rays, CT scans, PET scans, and MRIs. I have those tests frequently now, to determine how well my current treatment is proceeding, whether the cancer is progressing or held at bay, and when we should change treatments to something that might be more effective. Last week’s tests and scans showed that there is still cancer in my neck, spine, ribs, and hips. The blood tests had been showing a reduction in the total load of cancer cells in my body, but as the numbers slowed to a standstill, they agreed with the increasing pain in my hips, left ribs, and neck, one that agrees with the scans; we will have to change treatments.
Just to survive, I spend a day at the hospital every two out of three weeks now, receiving chemotherapy through the port implanted in my chest. To lessen the pain of bone metastasis, caused by swelling of the bone as the cancer cells populate the core and push outward against its thin covering, I am undergoing pallative radiation therapy this month: each workday for three weeks. It is working – Thank God, it is working! – but it takes the whole morning to go for treatment and back, and then I sleep it off for several hours, waking when my children arrive home from school. Yes, I have two little children. It is hard to balance treatment with their care, but I am grateful for the opportunity to try. I am grateful that my body responded to treatment the first time, that my chemotherapy, surgery, and radiation in 2007-8 beat back the cancer and gave me another chance to live, to be their mom — the baby, after all, is only four-and-a-half.
But, like 30% of other breast cancer survivors, the cancer came back. I blamed myself, but we now know that the recurrence of cancer was not my fault. Researchers now say that if a cancer is going to recur, cancer cells have already escaped the breast for other parts of the body even before the primary cancer is detected by today’s best methods of detection, let alone breast self-exams, the most highly recommended method of detection of breast cancers.
I am not alone. Over 150,000 women and some men are living with metastatic breast cancer in the U.S. 45,000 die each year. There is no cure. [In 1980, the median survival after initial diagnosis of metastatic breast cancer (that is, not one that was diagnosed earlier, like mine) was 3 years. Twenty years later, that number has not significantly changed.]
There are treatments that improve quality of life, like my radiation therapy this month, and chemotherapy to reduce the tumor burden that we have to struggle against, but these treatments are given to improve quality of life, not to cure. The end result, after all, is the same.
In January of this year, I participated in my first clinical trial, eager to help move research forward, excited about participating in research on metastatic disease. It was unsuccessful; by February, I was confined to bed, the soles of my feet red hot, skin peeled off, and in terrible shape. Only then did I *really* understand that a Phase I/II clinical trial first tests toxicity; the amount of drug that the body can bear within reason. The level that I was given was too much.
I started a new trial in March that compared standard-of-care injections with less frequent injections. That was fine, except I did worry whether the study would be successful, as I was assigned to have less frequent injections, and was I hurting my chances for survival with this decision? No one knew, and that was the purpose of that clinical trial. I continue receiving those injections, but was moved off the trial when the next round of scans showed that the cancer spread to my bones. My next treatment will be with a different drug.
I believe in research. I believe in it so much that I have put my body on the line, participating in clinical trials before I even understood the rarity of the opportunity. Trials for metastatic disease are few and far between — for the FDA mandates that before any clinical trial on metastatic disease start, the drug be shown effective in reducing primary breast cancers first. But many researchers are now saying that metastatic disease does not behave the same as primary disease, so what good does this regulation do for those of us whose cancer has already come back, despite the drugs we used for our primary disease?
The regulation protects us, yes. But it also makes the testing of new drugs that might work on metastatic breast cancer much rarer than it might otherwise be.
I have attended two significant events with other metastatic women this year, and each time we have asked the organizers and advocates how we can participate in more clinical trials. How we can donate tissue, or time, or our very bodies … so that others may benefit from the research, and so that we can see the community actively working toward control of — or even a cure for — metastatic breast cancer.
With everything from groceries to debit cards going pink this month, special coverage on the news and advertisements on the radio, there is money and energy flowing in for awareness, treatment, and research on primary breast cancer. But the funding for metastatic breast cancer remains at 3% of all funding for breast cancer research in the United States.
Metastatic breast cancer is a variation of the breast cancer we hear about every day; it is a progression of that disease, and a deadly one. It is what I feared; it is what so many of us cancer survivors diagnosed with Stage I, II, or III breast cancer fear. While women with Stage I, II, or III breast cancer look for the “cure” and celebrate “hope,” those of us who have had a recurrence or are diagnosed first at Stage IV are not quite so happy and shiny this month of October. Our “hope” is more desperate, and there is no chance today that we our cancer will ever be “cured.”
We attend the Pinktober events, the celebrations of progress for breast cancer, perhaps standing on the sidelines, quietly cheering our sisters on. We are genuinely thrilled for the progress that has been made in understanding about the importance of breast cancer self-exams; about follow up testing for everyone, no matter their ability to pay; and in the discovery of 20 or so chemotherapies that can beat back primary breast cancers, alone or in combination. We smile as our Stage I, II, and III sisters take the stage, thrilled to share their stories and years of survival since that day each found a lump in her breast, and we clap as hard as anyone else for their survival. It is, after all wonderful news. We lower our eyes in remembrance of the women that the organization has lost in the past year, and we try to cheer for the hopeful outlook of more awareness, more research that the organizers swear to us will come if we just buy one more t-shirt, sell ten more tchotchkes, write that check before you leave. We accept the pink ribbon and pin it to our shirts, but we often feel that it doesn’t quite fit. The pink ribbons and survivor pride and celebrations are parts of a wonderful day, but our day is not done, you see. When we go home, we take off our ribbons and take our pills and set our alarms, for in the morning, we have a chemo appointment. Or a follow-up visit. A scan. Or we’re just waiting to see the results — has the cancer progressed since last time?
There is often deep reflection on those dark nights. We support early detection, breast self-exams, mammograms, and we smile when someone shows us their pink ribbons or tries on pin one on us. But still, we may come away from events like this with a tear in our eye, or mad as hell. If there are so many reasons to “hope,” we ask, then can we please be included? If all these walks and collections and special pink hair dryers and vacuum cleaners are being sold “for the cure,” is some of it, at least some of it, going to research metastatic disease?
Why is research on metastatic disease funded at a level of just 3% of all breast cancer research, when metastatic disease is the state that all breast cancer patients reach if their cancer recurs? Here’s a dirty little secret: very few people die of breast cancer confined to the breast. Breast cancer deaths are caused by treatment or metastasis, after the initial cancer has spread away from the breast and into vital organs. We need to research that end of the cancer spectrum too.
Yes, let’s prevent cancer. By all means, let’s prevent one more woman from suffering with this disease.
But let’s also research metastatic cancer, more, and faster, and let’s prevent women from dying from this disease.
Over 30% of women diagnosed with Stage I, II, and III breast cancers will suffer a recurrence and become metastatic. Many more are diagnosed at Stage IV, after the initial cancer has already spread. There is no cure. And yet only 3% of the funding is focused on this end state.
How is this right?
For more on Metastatic Breast Cancer Day: this article in the Huffington Post, the Metastatic Breast Cancer Network, Metavivor.org, @ihatebreastcancer Katherine O’Brian, age 45; @ccchronicles Sarah, age 41; @justenjoyhim Judy; @jodyms Women with Cancer, @pinkribbonblues Gayle Sulik, a cancer fighter’s stunning alterego @Chemobabe; and the wonderful Twitter stylings of @stales, @talkabouthealth, and others who gather at #bcsm and #mbc. Thank you for reading; our goal is to increase research funding for metastatic disease and to change the conversation. When you hear “buy this and we’ll donate to breast cancer!” I hope you’ll wonder, or even ask, “What percentage of your organization’s funds go to research metastatic breast cancer?”
