A few days ago, I received an email from my friend HelenJonsen about a fundraising effort that is very near and dear to her heart. Helen and her family are volunteering for the 3rdAnnual Hope & Heroes Walk to show their support for the clinic that helped her own daughter, in her journey with cancer. Taking place on April 29th, 2012 in Manhattan’s Clinton Cove Park, this fundraiser is to help ensure that the unique clinical care programs and cutting edge research funded by Hope & Heroes will continue.
Specifically associated with Columbia University’s Herbert Irving Child & Adolescent Oncology Center, Hope & Heroes boasts the ultimate NY start. In 1997, Beth, a teenage Hodgkin’s Disease patient, decided to write the then NY Yankees first baseman, Tino Martinez. Tino responded to Beth’s letter and invited her watch the Yankees during their spring training. Tino and Beth “hit” it off, and their friendship inspired Tino to become more proactive in the lives of other young cancer patients by pledging a donation for every RBI he made. The NY sports scene quickly caught wind of this, and a local sportswriter, Mike Lupica, dubbed this effort “Hope and Heroes.”
While the cancer center had been accepting donations for the purpose of supporting the innovative programs started by its director, Dr. Michael Weiner, the effort had finally been given a name. But, it wasn’t until 2002 when Hope & Heroes filed for a 501(c)(3), giving this charity an official stamp.
According to Jeremy Shatan, the acting Executive Director of Hope & Heroes, the clinic sees about 100-150 new patients each year and about 5,000 – 7,000 total patient visits. This number includes patients who are currently receiving treatment as well as those who have recovered but are still being monitored.
The money donated to Hope & Heroes Children’s Cancer Fund is used, in part, to finance many special programsthat would otherwise be impossible. Benefitting both the young patients and their families, these programs include the use of complementary medicine folded in to an often harsh regimen of surgery, chemotherapy, and/or radiation. In addition, Hope & Heroes also helps to provide emotional counseling to those in need, as well as allow these young cancer patients to participate in translational research studies, which opens the possibility for novel treatments.
The Hope & Heroes Children’s Cancer Fund has forged a permanent place in the hearts of many, including Helen and her family. We at Double X Science find this effort to beyond a “good deed.” Please show support for this organization by donating. Because you never know when a kid will need it.
To donate to the 3rd Annual Hope & Heroes Walk, go here.
According to Leslie Brunetta, she now has much more hair than she had last July.
We became aware of Leslie Brunetta because of her book, Spider Silk: Evolution and 400 Million Years of Spinning, Waiting, Snagging, and Mating, co-authored with Catherine L. Craig. Thanks to a piece Leslie wrote for the Concord Monitor (and excerpted here), we also learned that she is a breast cancer survivor. Leslie agreed to an interview about her experience, and in her emailed responses, she candidly talks about her diagnosis, treatment, and follow-up for her cancers, plural: She was diagnosed simultaneously with two types of breast cancer.
DXS: In your Concord Monitor piece, you describe the link between an understanding of the way evolution happens and some of the advances in modern medicine. What led you to grasp the link between the two?
LB: I think, because I’m not a scientist (I’m an English major), a lot of things that scientists think are obvious strike me as revelations. I somehow had never realized that the search for what would turn out to be DNA began with trying to explain how, in line with the theory of evolution by natural selection, variation arises and traits are passed from generation to generation. As I was figuring out what each chapter in Spider Silk would be about, I tried to think about the questions non-biologists like me would still have about evolution when they got to that point in the book. By the time we got past dragline silk, I realized that we had so far fleshed out the ways that silk proteins could and have evolved at the genetic level. But that explanation probably wouldn’t answer readers’ questions about how, for example, abdominal spinnerets—which are unique to spiders—might have evolved: the evolution of silk is easier to untangle than the evolution of body parts, which is why we focused on it in the first place.
I decided I wanted to write a chapter on “evo-devo,” evolutionary developmental biology, partly because there was a cool genetic study on the development of spinnerets that showed they’ve evolved from limbs. Fortunately, my co-author, Cay Craig, and editor at Yale, Jean Thomson Black, okayed the idea, because that chapter wasn’t in the original proposal. Writing that chapter, I learned why it took so long—nearly a century—to get from Darwin and Mendel to Watson and Crick and then so long again to get to where we are today. If we non-scientists understand something scientific, it’s often how it works, not how a whole string of people over the course of decades building on each other’s work discovered how it works. I knew evolution was the accumulation of gene changes, but, until I wrote that chapter, it hadn’t occurred to me that people began to look for genes because they wanted to understand evolution.
So that was all in the spider part of my life. Then, a few months into the cancer part of my life, I was offered a test called Oncotype DX, which would look at genetic markers in my tumor cells to develop a risk profile that could help me decide whether I should have chemotherapy plus tamoxifen or just tamoxifen. The results turned out to be moot in my case because I had a number of positive lymph nodes, although it was reassuring to find out that the cancer was considered low risk for recurrence. But still—the idea that a genetic test could let some women avoid chemo without taking on extra risk, that’s huge. No one would want to go through chemo if it wasn’t necessary. So by then I was thinking, “Thank you, Darwin!”
And then, coincidentally, the presidential primary season was heating up, and there were a number of serious candidates (well, serious in the sense that they had enough backing to get into the debates) who proudly declared that they had no time for the theory of evolution. And year after year these stupid anti-evolution bills are introduced in various state legislatures. While I was lying on the couch hanging out in the days after chemo sessions, I started thinking, “So, given that you don’t give any credence to Darwin and his ideas, would you refuse on principle to take the Oncotype test or gene-based therapies like Gleevec or Herceptin if you had cancer or if someone in your family had cancer? Somehow I don’t think so.” That argument is not going to convince hard-core denialists (nothing will), but maybe the cognitive dissonance in connection with something as concrete as cancer will make some people who waver want to find out more.
DXS: You mention having been diagnosed with two different forms of cancer, one in each breast. Can you say what each kind was and, if possible, how they differed?
LB: Yes, I unfortunately turned out to be an “interesting” case. This is one arena where, if you possibly can, you want to avoid being interesting. At first it seemed that I had a tiny lesion that was an invasive ductal carcinoma (IDC) and that I would “just” need a lumpectomy and radiation. Luckily for me, the doctor reading my mammogram is known as an eagle eye, and she saw a few things that—given the positive finding from the biopsy—concerned her. She recommended an MRI. In fact, even though I switched to another hospital for my surgery, she sent emails there saying I should have an MRI. That turned up “concerning” spots in both breasts, which led to more biopsies, which revealed multiple tiny cancerous lesions. The only reasonable option was then a double mastectomy.
The lesions in the right breast were IDCs. About 70% of breast cancers are diagnosed as IDCs. Those cancers start with the cells lining the milk ducts. The ones in the left breast were invasive lobular carcinomas (ILCs), which start in the lobules at the end of the milk ducts. Only about 10% of breast cancers are ILCs.
Oncologists hate lobular cancer. Unlike ductal cancers, which form as clumps of cells, lobular cancers form as single-file ribbons of cells. The tissue around ductal cancer cells reacts to those cells, which is why someone may feel a lump—she’s (or he’s) not feeling the cancer itself but the inflammation of the tissue around it. And because the cells clump, they show up more readily on mammograms. Not so lobular cancers. They mostly don’t give rise to lumps and they’re hard to spot on mammograms. They snake their way through tissue for quite a while without bothering anything.
In my case, this explains why last spring felt like an unremitting downhill slide. Every time someone looked deeper, they found something worse. It turned out that on my left side, the lobular side, I had multiple positive lymph nodes, which was why I needed not just chemo but also radiation (which usually isn’t given after a mastectomy). That was the side that didn’t even show up much on the mammogram. On the right side, the ductal side, which provoked the initial suspicions, my nodes were clear. I want to write about this soon, because I want to find out more about it. I’ve only recently gotten to the place emotionally where I think I can deal with reading the research papers as opposed to more general information. By the way, the resource that most helped us better understand what my doctors were talking about was Dr. Susan Love’s Breast Book. It was invaluable as we made our way through this process, although it turned out that I had very few decisions to make because there was usually only one good option.
DXS: As part of your treatment, you had a double mastectomy. One of our goals with this interview is to tell women what some of these experiences with treatment are like. If you’re comfortable doing so, could you tell us a little bit about what a double mastectomy entails and what you do after one in practical terms?
LB: A mastectomy is a strange operation. In a way, it’s more of an emotional and psychological experience than a physical experience. My surgeon, who was fantastic, is a man, and when we discussed the need for the mastectomies he said that I would be surprised at how little pain would be involved and how quick the healing would be. Even though I trusted him a lot by then, my reaction was pretty much, “Like you would know, right?” But he did know. When you think about it, it’s fairly non-invasive surgery. Unless the cancer has spread to the surrounding area, which doesn’t happen very often now due to early detection, no muscle or bone is removed. (Until relatively recently, surgeons removed the major muscle in the chest wall, and sometimes even bone, because they believed it would cut the risk of recurrence. That meant that many women lost function in their arm and also experienced back problems.) None of your organs are touched. They don’t go into your abdominal cavity. Also, until recently, they removed a whole clump of underarm lymph nodes when they did lumpectomies or mastectomies. Now they usually remove just a “sentinel node,” because they know that it will give them a fairly reliable indicator of whether the cancer has spread to the other nodes. That also makes the surgery less traumatic than it used to be.
I opted not to have reconstruction. Reconstruction is a good choice for many women, but I didn’t see many benefits for me and I didn’t like the idea of a more complicated surgery. My surgery was only about two hours. I don’t remember any pain at all afterwards, and my husband says I never complained of any. I was in the hospital for just one night. By the next day, I was on ibuprofen only. The bandages came off two days after the surgery.
That’s shocking, to see your breasts gone and replaced by thin red lines, no matter how well you’ve prepared yourself. It made the cancer seem much more real in some way than it had seemed before. In comparison, the physical recovery from the surgery was fairly minor because I had no infections or complications. There were drains in place for about 10 days to collect serum, which would otherwise collect under the skin, and my husband dealt with emptying them twice a day and measuring the amount. I had to sleep on my back, propped up, because of where the drains were placed, high up on my sides, and I never really got used to that. It was a real relief to have the drains removed.
My surgeon told me to start doing stretching exercises with my arms right away, and that’s really important. I got my full range of motion back within a couple of months. But even though I had my surgery last March, I’ve noticed lately that if I don’t stretch fully, like in yoga, things tighten up. That may be because of the radiation, though, because it’s only on my left side. Things are never quite the same as they were before the surgery, though. Because I did have to have the axillary nodes out on my left side, my lymph system is disrupted. I haven’t had any real problems with lymphedema yet, and I may never, but in the early months I noticed that my hands would swell if I’d been walking around a lot, and I’d have to elevate them to get them to drain back. That rarely happens now. But I’ve been told I need to wear a compression sleeve if I fly because the change in air pressure can cause lymph to collect. Also, I’m supposed to protect my hands and arms from cuts as much as possible. It seems to me that small nicks on my fingers take longer to heal than they used to. So even though most of the time it seems like it’s all over, I guess in those purely mechanical ways it’s never over. It’s not just that you no longer have breasts, it’s also that nerves and lymph channels and bits of tissue are also missing or moved around.
The bigger question is how one deals with now lacking breasts. I’ve decided not to wear prostheses. I can get away with it because I was small breasted, I dress in relatively loose clothes anyway, and I’ve gained confidence over time that no one notices or cares and I care less now if they do notice. But getting that self-confidence took quite a while. Obviously, it has an effect on my sex life, but we have a strong bond and it’s just become a piece of that bond. The biggest thing is that it’s always a bit of a shock when I catch sight of myself naked in a mirror because it’s a reminder that I’ve had cancer and there’s no getting around the fact that that sucks.
DXS: My mother-in-law completed radiation and chemo for breast cancer last year, and if I remember correctly, she had to go frequently for a period of weeks for radiation. Was that you experience? Can you describe for our readers what the time investment was like and what the process was like?
LB: I went for radiation 5 days a week for about 7 weeks. Three days a week, I’d usually be in and out of the hospital within 45 minutes. One day a week, I met with the radiology oncologist and a nurse to debrief, which was also a form of emotional therapy for me. And one day a week, they laid on a chair massage, and the nurse/massage therapist who gave the massage was great to talk to, so that was more therapy. Radiation was easy compared to chemo. Some people experience skin burning and fatigue, but I was lucky that I didn’t experience either. Because I’m a freelancer, the time investment wasn’t a burden for me. I’m also lucky living where I live, because I could walk to the hospital. It was a pleasant 3-mile round-trip walk, and I think the walking helped me a lot physically and mentally.
DXS: And now to the chemo. My interest in interviewing you about your experience began with a reference you made on Twitter to “chemo brain,” and of course, after reading your evolution-medical advances piece. Can you tell us a little about what the process of receiving chemotherapy is like? How long does it take? How frequently (I know this varies, but your experience)?
LB: Because of my age (I was considered young, which was always nice to hear) and state of general good health, my oncologist put me on a dose-dense AC-T schedule. This meant going for treatment every two weeks over the course of 16 weeks—8 treatment sessions. At the first 4 sessions, I was given Adriamycin and Cytoxan(AC), and the last 4 sessions I was given Taxol (T). The idea behind giving multiple drugs and giving them frequently is that they all attack cancer cells in different ways and—it goes back to evolution—by attacking them frequently and hard on different fronts, you’re trying to avoid selecting for a population that’s resistant to one or more of the drugs. They can give the drugs every two weeks to a lot of patients now because they’ve got drugs to boost the production of white blood cells, which the cancer drugs suppress. After most chemo sessions, I went back the next day for a shot of one of these drugs, Neulasta.
The chemo clinic was, bizarrely, a very relaxing place. The nurses who work there were fantastic, and the nurse assigned to me, Kathy, was always interesting to talk with. She had a great sense of humor, and she was also interested in the science behind everything we were doing, so if I ever had questions she didn’t have ready answers for, she’d find out for me. A lot of patients were there at the same time, but we each had a private space. You’d sit in a big reclining chair. They had TVs and DVDs, but I usually used it as an opportunity to read. My husband sat through the first session with me, and a close friend who had chemo for breast cancer 15 years ago sat through a few other sessions, but once I got used to it, I was comfortable being there alone. Because of the nurses, it never felt lonely.
I’d arrive and settle in. Kathy would take blood for testing red and white blood counts and, I think, liver function and some other things, and she’d insert a needle and start a saline drip while we waited for the results. I’ve always had large veins, so I opted to have the drugs administered through my arm rather than having a port implanted in my chest. Over the course of three to four hours, she’d change the IV bags. Some of the bags were drugs to protect against nausea, so I’d start to feel kind of fuzzy—I don’t think I retained a whole lot of what I read there! The Adriamycin was bright orange; they call it the Red Devil, because it can chew up your veins—sometimes it felt like it was burning but Kathy could stop that by slowing the drip. Otherwise, it was fairly uneventful. I’d have snacks and usually ate lunch while still hooked up.
I was lucky I never had any reactions to any of the drugs, so actually getting the chemo was a surprisingly pleasant experience just because of the atmosphere. On the one hand, you’re aware of all these people around you struggling with cancer and you know things aren’t going well for some of them, so it’s heartbreaking, and also makes you consider, sometimes fearfully, your own future no matter how well you’re trying to brace yourself up. But at the same time, the people working there are so positive, but not in a Pollyannaish-false way, that they helped me as I tried to stay positive. The social worker stopped in with each patient every session, and she was fantastic—I could talk out any problems or fears I had with her, and that helped a huge amount.
DXS: Would you be able to run us through a timeline of the physical effects of chemotherapy after an infusion? How long does it take before it hits hardest? My mother-in-law told me that her biggest craving, when she could eat, was for carb-heavy foods like mashed potatoes and for soups, like vegetable soup. What was your experience with that?
LB: My biggest fear when I first learned I would need chemo was nausea. My oncologist told us that they had nausea so well controlled that over the past few years, she had only had one or two patients who had experienced it. As with the surgeon’s prediction about mastectomy pain, this turned out to be true: I never had even a single moment of nausea.
But there were all sorts of other effects. For the first few days after a session, the most salient effects were actually from the mix of drugs I took to stave off nausea. I generally felt pretty fuzzy, but not necessarily sleepy—part of the mix was steroids, so you’re a little hyped. There’s no way I’d feel safe driving on those days, for example. I’d sleep well the first three nights because I took Ativan, which has an anti-nausea effect. But except for those days, my sleep was really disrupted. Partly that’s because, I’m guessing, the chemo hits certain cells in your brain and partly it’s because you get thrown into chemical menopause, so there were a lot of night hot flashes. Even though I’d already started into menopause, this chemo menopause was a lot more intense and included all the symptoms regularly associated with menopause.
By the end of the first session, I was feeling pretty joyful because it was much less bad than I had thought it would be. By the second week in the two-week cycle, I felt relatively normal. But even though it never got awful, the effects started to accumulate. My hair started to fall out the morning I was going to an award ceremony for Spider Silk. It was ok at the ceremony, but we shaved it off that night. I decided not to wear a wig. First, it was the summer, and it would have been hot. Second, I usually have close to a buzz cut, and I can’t imagine anyone would make a wig that would look anything like my hair. My kids’ attitude was that everyone would know something was wrong anyway, so I should just be bald, and that helped a lot. But it’s hard to see in people’s eyes multiple times a day their realization that you’re in a pretty bad place. Also, it’s not just your head hair that goes. So do your eyebrows, your eyelashes, your pubic hair, and most of the tiny hairs all over your skin. And as your skin cells are affected by the chemo (the chemo hits all fast-reproducing cells), your skin itself gets more sensitive and then is not protected by those tiny hairs. I remember a lot of itching. And strange things like my head sticking to my yoga mat and my reading glasses sticking to the side of my head instead of sliding over my ears.
I never lost my appetite, but I did have food cravings during the AC cycles. I wanted sushi and seaweed salad, of all things. And steak. My sense of taste went dull, so I also wanted things that tasted strong and had crunch. I stopped drinking coffee and alcohol, partly because of the sleep issues but partly because it didn’t taste very good anyway. I drank loads of water on the advice of the oncologist, the nurses, and my acupuncturist, and I think that helped a lot.
During the second cycle, I developed a fever. That was scary. I was warned that if I ever developed a fever, I should call the oncologist immediately, no matter the time of day or day of week. The problem is that your immune response is knocked down by the chemo, so what would normally be a small bacterial infection has the potential to rage out of control. I was lucky. We figured out that the source of infection was a hemorrhoid—the Adriamycin was beginning to chew into my digestive tract, a well-known side effect. (Having to pay constant attention to yet another usually private part of the body just seemed totally unfair by this point.) Oral antibiotics took care of it, which was great because I avoided having to go into the hospital and all the risks entailed with getting heavy-duty IV antibiotic treatment. And we were also able to keep on schedule with the chemo regimen, which is what you hope for.
After that, I became even more careful about avoiding infection, so I avoided public places even more than I had been. I’m very close to a couple of toddlers, and I couldn’t see them for weeks because they were in one of those toddler constant-viral stages, and I really missed them.
The Taxol seems to be much less harsh than the AC regimen, so a lot of these side effects started to ease off a bit by the second 8 weeks, which was certainly a relief.
I was lucky that I didn’t really have mouth sores or some of the other side effects. Some of this is, I think, just because besides the cancer I don’t have any other health issues. Some of it is because my husband took over everything and I don’t have a regular job, so I had the luxury of concentrating on doing what my body needed. I tried to walk every day, and I slept when I needed to, ate when and what I needed to, and went to yoga class when my immune system was ok. I also went to acupuncture every week. I know the science is iffy on that, but I think it helped me with the side effects, even if it was the placebo effect at work (I’m a big fan of the placebo effect). We also both had extraordinary emotional support from many friends and knew we could call lots of people if we needed anything. That’s huge when you’re in this kind of situation.
Currently, I’m still dealing with some minor joint pains, mostly in my wrists and feet. I wasn’t expecting this problem, but my oncologist says it’s not uncommon: they think it’s because your immune system has to re-find its proper level of function, and it can go into overdrive and set up inflammation in the joints. That’s gradually easing off, though.
Most people don’t have it as easy as I did in terms of the medical, financial, and emotional resources I had to draw on. I’m very mindful of that and very grateful.
DXS: You say that you had “few terrible side effects” and a “very cushy home situation.” I’m sure any woman would like to at least be able to experience the latter while dealing with a full-body chemical attack. What were some factors that made it “cushy” that women might be able to talk to their families or caregivers about replicating for them?
LB: As I’ve said, some of it is just circumstance. For example, my kids were old enough to be pretty self-sufficient and old enough to understand what was going on, which meant both that they needed very little from me in terms of care and also that they were less scared than they might have been if they were younger. My husband happens to be both very competent (more competent than I am) around the house and very giving. I live in Cambridge, MA, where I could actually make choices about where I wanted to be treated at each phase and know I’d get excellent, humane care and where none of the facilities I went to was more than about 20 minutes away.
Some things that women might have some control over and that their families might help nudge them toward:
Find doctors you trust. Ask a lot of questions and make sure you understand the answers. But don’t get hung up on survival or recurrence statistics. There’s no way to know for sure what your individual outcome will be. Go for the treatment that you and your doctors believe will give you the best chance, and then assume as much as possible that your outcome will be good.
Make sure you talk regularly with a social worker or other therapist who specializes in dealing with breast cancer patients. If you have fears or worries that you don’t want to talk to your partner or family about, here’s where you’ll get lots of help.
Find compatible friends who have also had cancer to talk to. I had friends who showed me their mastectomy scars, who showed me their reconstructions, who told me about their experiences with chemo and radiation, who told me about what life after treatment was like (is still like decades later…). And none of them told me, “You should…” They all just told me what was hard for them and what worked for them and let me figure out what worked for me. Brilliant.
Try to get some exercise even if you don’t feel like it. It was often when I felt least like moving around that a short walk made me feel remarkably better. But I would forget that, so my husband would remind me. Ask someone to walk with you if you’re feeling weak. Getting your circulation going seems to help the body process the chemo drugs and the waste products they create. For the same reason, drink lots of water.
Watch funny movies together. Laughter makes a huge difference.
Pamper yourself as much as possible. Let people take care of you and help as much as they’re willing. But don’t be afraid to say no to anything that you don’t want or that’s too much.
Family members and caregivers should also take care of themselves by making some time for themselves and talking to social workers or therapists if they feel the need. It’s a big, awful string of events for everyone involved, not just the patient.
DXS: In the midst of all of this, you seem to have written a fascinating book about spiders and their webs. Were you able to work while undergoing your treatments? Were there times that were better than others for attending to work? Could work be a sort of occupational therapy, when it was possible for you to do it, to keep you engaged?
LB: The book had been published about 6 months before my diagnosis. The whole cancer thing really interfered not with the writing, but with my efforts to publicize it. I had started to build toward a series of readings and had to abandon that effort. I had also started a proposal for a new book and had to put that aside. I had one radio interview in the middle of chemo, which was kind of daunting but I knew I couldn’t pass up the opportunity, and when I listen to it now, I can hear my voice sounds kind of shaky. It went well, but I was exhausted afterwards. Also invigorated, though—it made me feel like I hadn’t disappeared into the cancer. I had two streams of writing going on, both of which were therapeutic. I sent email updates about the cancer treatment to a group of friends—that was definitely psychological therapy. I also tried to keep the Spider Silk blog up to date by summarizing related research papers and other spider silk news—that was intellectual therapy. I just worked on them when I felt I wanted to. The second week of every cycle my head was usually reasonably clear.
I don’t really know whether I have chemo brain. I notice a lot of names-and-other-proper-nouns drop. But whether that’s from the chemo per se, or from the hormone changes associated with the chemically induced menopause, or just from emotional overload and intellectual distraction, I don’t know. I find that I’m thinking more clearly week by week.
DXS: What is the plan for your continued follow-up? How long will it last, what is the frequency of visits, sorts of tests, etc.?
LB: I’m on tamoxifen and I’ll be on that for probably two years and then either stay on that or go onto an aromatase inhibitor [Ed. note: these drugs block production of estrogen and are used for estrogen-sensitive cancers.] for another three years. I’ll see one of the cancer doctors every three months for at least a year, I think. They’ll ask me questions and do a physical exam and take blood samples to test for tumor markers. At some point the visits go to every six months.
For self-care, I’m exercising more, trying to lose some weight, and eating even better than I was before.
DXS: Last…if you’re comfortable detailing it…what led to your diagnosis in the first place?
LB: My breast cancer was uncovered by my annual mammogram. I’ve worried about cancer, as I suppose most people do. But I never really worried about breast cancer. My mother has 10 sisters and neither she nor any of them ever had breast cancer. I have about 20 older female cousins—I was 50 when I was diagnosed last year–and as far as I know none of them have had breast cancer. I took birth control pills for less than a year decades ago. Never smoked. Light drinker. Not overweight. Light exerciser. I breastfed both kids, although not for a full year. Never took replacement hormones. Never worked in a dangerous environment. Never had suspicious mammograms before. So on paper, I was at very low risk as far as I can figure out. After I finished intensive treatment, I was tested for BRCA1 and BRCA2 (because mutations there are associated with cancer in both breasts) and no mutations were found. Unless or until some new genetic markers are found and one of them applies to me, I think we’ll never know why I got breast cancer, other than the fact that I’ve lived long enough to get cancer. There was no lump. Even between the suspicious mammogram and ultrasound and the biopsy, none of the doctors examining me could feel a lump or anything irregular. It was a year ago this week that I got the news that the first biopsy was positive. In some ways, because I feel really good now, it’s hard to believe that this year ever happened. But in other ways, the shock of it is still with me and with the whole family. Things are good for now, though, and although I feel very unlucky that this happened in the first place, I feel extremely lucky with the medical care I received and the support I got from family and friends and especially my husband.
Leslie Brunetta’s articles and essays have appeared in the New York Times,Technology Review, and the Sewanee Review as well as on NPR and elsewhere. She is co-author, with Catherine L. Craig, of Spider Silk: Evolution and 400 Million Years of Spinning, Waiting, Snagging, and Mating (Yale University Press).
[Editor's note: I was on Twitter, as usual, a couple of days ago, and started seeing tweets with the hashtag #SSCAbc. They contained information that I, an avid consumer of science and medical information, don't normally see addressed in breast cancer stories, including for young women with breast cancer and how to talk to children about having breast cancer. I've aggregated some of those tweets below, but you can read more at the hashtag here, which represents the Seattle Cancer Care Alliance, whose representatives were conducting the Twitter session.]
Are some of these possible signs of breast cancer present in a famous work of art? Image: public domain, US gov
by Liza Gross, contributor
[Ed. note: This article was originally posted on KQED QUEST on October 3, 2012. It is reposted here with kind permission.]
Just a generation ago, October belonged to the colors of fall, when “every green thing loves to die in bright colors,” as Henry Ward Beecher said. (Growing up back East, you read a lot of odes to fall foliage in school.) For years after moving to the Bay Area from Pennsylvania, I felt a twinge of melancholy when October rolled around, knowing the once-demure woodlands would let loose in a fleeting blaze of brash reds and orange-tinged yellows without me.
Now, of course, October belongs to all things pink, as high-profile outfits from the NFL to Ace Hardware set aside 31 days to raise awareness and money for Breast Cancer Awareness Month. (National Breast Cancer Awareness Month was launched in 1985 by CancerCare, a nonprofit cancer support group, and cancer-drug maker AstraZeneca.)
But as women’s health advocate Dr. Susan Love says, awareness of the disease isn’t the issue. “When the NFL is wearing pink gloves, I think you can say we’re aware,” she said last year. “But the awareness isn’t enough.”
It’s a message that gets lost in an ocean of pink-ribbon products (from bagels and teddy bears to vodka and wine glasses), even though critics like the San Francisco-based nonprofit Breast Cancer Action have warned about “pinkwashing” for years, urging people to look behind the feel-good messages to see who’s really benefiting from the commercialization of cancer.
Breast Cancer Action’s Think Before You Pink—Raise a Stink! campaign encourages consumers to think critically about pink products and ask four simple questions to find out what proportion of proceeds go to breast cancer programs and whether the products sold are safe. The group has especially targeted cosmetics companies for marketing pink merchandise even as they sell products with toxic ingredients. (For more information, download the group’s 30-page “toolkit”.)
The group also urges companies to be more transparent and has long called out those it believes use a good cause to increase their bottom line.
Like Eureka, which donated a dollar for every vacuum cleaner sold in its “Clean for the Cure” campaign. Or American Express, which donated a penny per transaction in its “Charge for the Cure.” Both companies bowed out of the pink sweepstakes after Breast Cancer Action asked just how breast cancer patients were benefiting from the campaigns in a 2002 ad in the New York Times.
In October 2000, the San Francisco-based advocacy group
Breast Cancer Action ran a full page ad in the New York Times
West Coast Edition with text (not shown) inviting readers to
participate in its ”Stop Cancer Where It Starts” Campaign.
The campaign criticized breast cancer awareness campaigns
for pushing early detection and mammograms
(without acknowledging their limitations) while ignoring prevention.
(Image: Courtesy Breast Cancer Action)
Others, like KFC with its 2010 “Buckets for the Cure” campaign, climb on the pink bandwagon to peddle decidedly unhealthy products. Stephen Colbert’s take on the “pink bucket dilemma” shows just how ludicrous cause marketing has become. (Forward to 1:13.)
But even when money goes to breast cancer programs and not corporate coffers, is it going to the right place? Love (and several advocacy groups) has said for years that we need to shift our focus from cures to causes—and prevention.
If we can develop a vaccine for cervical cancer, says Love, why not for breast cancer? Early results of a clinical trial show promising results for a vaccine designed to prevent recurrence of one form of breast cancer. (The data were presented at a meeting and have not yet gone through peer review.)
As I wrote in May, Love’s Research Foundation is looking for volunteers in her online Army of Women to identify potential causes in order to eradicate the disease. (Anyone can sign up.)
In the late 1990s, The Breast Cancer Fund, the American Cancer Society,
and the Susan G. Komen Breast Cancer Foundation invited American
artists and writers to submit work about their breast cancer experiences.
The resulting exhibit (and book)—Art.Rage.Us.—opened in 1998
at San Francisco’s Main Library. At the time, project coordinator and
Breast Cancer Action Co-founder Susan Claymon said,
“Art.Rage.Us. presents deeply moving and beautiful expressions
from women with breast cancer, along with intensely personal
statements that provide a window into their hearts and minds.”
Claymon died of breast cancer in 2000. She was 61.
Prevention is also a primary concern for the Athena Breast Health Network, a partnership of the five University of California medical centers that collects personalized data on breast cancer patients to optimize treatment and ultimately figure out how to stop cancer before it starts. The site also includes a comprehensive list of breast cancer risk factors.
Recent research suggests that the biology behind one of the listed risk factors, dense breast tissue, may be more complicated than previously thought. Earlier studies found that women with dense breasts had a higher risk of developing breast cancer. (And this finding led to the“right to know” legislation that Gov. Brown recently signed, requiring doctors to tell women if their mammograms show they have dense breasts.) But a recent study in the Journal of the National Cancer Institute suggests that women with denser breasts are not more likely to die of breast cancer. The greatest risk was found for women who had the fattiest breast tissue, a condition linked to obesity. This suggests that if you have dense breast tissue, you may be more likely to get cancer—but not die of it. Love’s blog explained the significance of the findings:
The recent study on breast density showed us, yet again, that women who are obese when they are diagnosed with breast cancer are more likely to die of breast cancer than women who are not obese. Doctors need to do more than tell women about their breast density or remind them to get a mammogram. They need to be teaching women the importance of exercising, losing weight (if necessary) and eating a well-balanced diet—both before and after a breast cancer diagnosis.Continue reading →
One thing that cervical cancer awareness overlooks is that HPV causes not only that cancer but also can play a role in penile, vaginal, urethral, anal, and head and neck cancers. In fact, a recent study found that about 1 in 10 men and almost 4 in 100 women are orally infected with HPV, the most common sexually transmitted virus in the United States, and HPV-related head and neck cancer rates are higher among men. Further, HPV-related oral cancers have been on the rise for about two decades now, and HPV is now responsible for about 50% of oral cancers today.
Research also shows that about 50% of college age women acquire an HPV infection within four years of becoming sexually active. In addition, an infected mother can pass HPV to her baby during childbirth, and the virus can populate the child’s larynx, causing recurrent growths that block the respiratory tract and require surgical removal.
The remainder of this post appeared initially on the Parents of Kids with Infectious Diseasesite, which provides information for preventing infectious disease in addition to supporting parents whose children have them. As insidious as HPV is, the vast majority of HPV infections can be prevented now with a vaccine.
Have you or a loved one ever had an abnormal Pap test result? If precancerous cells were identified, the cause was almost undoubtedly infection with human papillomavirus (HPV).Almost all cases of cervical cancerarise because of infection with this virus. Yet a vaccine can prevent infection with the strains that most commonly cause cervical cancer.
A vaccine against cancer. It’s true.
For the vaccine to work, though, a woman must have it before HPV infects her. You may find it difficult to look at your daughter, especially a pre-teen daughter, and think of that scenario. But the fact is that even if your daughter avoids all sexual contact until, say, her wedding night, she can still contract HPV from her partner. As we noted above, it happens to bethe most common sexually transmitted infection.
About 20 million Americans have an HPV infection, and 6 million people become newly infected every year. Half of the people who are ever sexually active pick up an HPV infection in a lifetime. That means your daughter, even if she waits until her wedding night, has a 1 in 2 chance of contracting the virus. Unless it’s a strain that causes genital warts, HPV usually produces no symptoms, and the infected person doesn’t even know they’ve been infected.
Until the cancer shows up.
And it can show up in more places than the cervix. This virus, you see, favors a certain kind of tissue, one that happens to be present in several parts of you. This tissue, a type of epithelium, is a thin layer of the skin and mucous membranes. It’s available for viral invasion in the cervix, vagina, vulva, anus, and the mouth and pharynx. In fact, HPV is poised to replace tobacco as the major cause of oral cancers in the United States.
The virus can even sometimes pass from mother to child, causingrecurrent respiratory papillomatosis, the recurrent growths in the throat that must be removed periodically and can sometimes become cancerous. It strikes about 2000 children each year in the United States.
How does a virus cause cancer? To understand that, you must first understand cancer. You may know that cells reproduce by dividing, and that cancer occurs when cells divide out of control. Behind most cancers is a malfunction in the molecules that tell cells to stop dividing. These molecules operate in a chain reaction of signaling, like a series of well-timed stoplights along a boulevard. If one starts sending an inappropriate “go” signal or fails to send a “stop” signal, the cell divides, making more cells just like it that also lack the right signals. If your body’s immune system doesn’t halt this inappropriate growth, we call it cancer.
The blueprint for building these “stop” molecules is in your genes, in your DNA sequences. As a virus, HPV also requires a blueprint to make more viruses. Viruses use the division machinery of the host cell—in you—to achieve reproduction by stealthily inserting their own DNA blueprint into the host DNA.
Sometimes, when it’s finished with the host, a virus leaves a little bit of its DNA behind. If that leftover DNA is in the middle of the blueprint for a “stop” molecule, the cell won’t even notice. It will use the contaminated instructions to build a molecule, one that no longer functions in stopping cell division. The result can be cancer.
Of the 150 HPV types or strains, about 40 of which pass through sexual contact, two in particular are associated with cancer,types 16 and 18. They are the ones that may persist for years and eventually change the cellular blueprint. The vaccines developed against those two strains are, therefore, anti-cancer vaccines.
Without a successful viral infection, viral DNA can’t disrupt your DNA. That’s what the HPV vaccine achieves against the two strains responsible forabout 70% of cervical cancers. Recent high-profile people have made claims about negative effects of this vaccine, claims that have beenthoroughly debunked. The Centers for Disease Control and Prevention as always offersaccurate informationabout the side effects associated with available HPV vaccines.
This achievement against cancer, including prevention of almost 100% of precancerous cervical changes related to types 16 and 18, is important.
Worldwide, a half million women receive a cervical cancer diagnosis each year, and 250,000 women die from it. These women are somebody’s daughter, wife, sister, friend. Women from all kinds of backgrounds, with all kinds of sexual histories.
Women whose precancerous cervical changes are identified in time often still must undergo uncomfortable and sometimes painful procedures to get rid of the precancerous cells. These invasive procedures includecone biopsiesthat require shots to numb the cervix and removal of a chunk of tissue from it. Cone biopsies carry a risk of causing infertility or miscarriage or preterm delivery. A vaccine for your daughter could prevent it all.
HPV doesn’t care if your daughter has had sex before. It’s equally oblivious to whether the epithelium it infects is in the cervix or in the mouth or pharynx or in an adult or a child. What it does respond to is antibodies that a body makes in response to the vaccine stimulus.
Even if your daughter’s first and only sex partner passes along one of the cancer-associated strains, if she’s been vaccinated, her antibodies will take that virus out cold. It’s a straightforward prevention against a lifetime of worry—and a premature death.
For more info: Facts about theHPV vaccinefrom the National Cancer Institute.
It started a few months after I had my second son. A pain. Sharp, unrelenting, abdominal. Occasional blood from a place where blood isn’t supposed to appear: the rectum. There. Got the R-word out of the way. After I had laparoscopy for presumed endometrial scarring as the cause of the pain, the pain nevertheless persisted. So, I was referred to a gastrointestinal (GI) specialist, or gastroenterologist. The GI doc I saw first was a man who, I later, discovered, was the GI doctor for my uncle and my father. They loved him. There probably was a sort of “hail fellow well met” male camaraderie between doctor and patient there that made them sympatico. Me, not so much. He looked at me, looked at my age (36), and decided that all I needed was to take some ibuprofen. He literally sent me home with instructions to take some ibuprofen a few times a day and call him, not in the morning, but maybe in a couple of weeks.
Two years later, after more episodes of blood in the toilet, continued pain, and, pardon me, but I think this information is important, a whole lot of mucus coming out of there, I went to another GI doctor. For whatever reason–even though my symptoms weren’t necessarily a match for colon cancer, even though I didn’t, to my knowledge, have any risk factors for colon cancer, even though I was still quite young to have colon cancer–he decided to do a colonoscopy. As I emerged from the anesthesia after the procedure, I saw my GI doctor talking with my husband. “How did it go?” I asked, groggy. He sort of smiled at me and said, “You’re not going to remember any of this, but those symptoms you had saved your life.” Unbeknownst to him, amnesia meds don’t work on me–I’ve had ample subsequent opportunities to test that hypothesis–and I did remember it.
How did it save my life? What they found in my colon, near where it meets my lower small intestine, was a large, flat growth, about two inches (5 cm) by one inch (2.5 cm). In GI parlance, it was a large, flat (sessile) polyp, which is not a good kind of polyp. Closer analysis of the thing after my GI doctor deftly removed it during a second procedure revealed it to be a tubulovillous adenoma with cancerous tendencies. In fact, my medical records from that doctor now say the word “cancer” on them.
Adenomas, the type of tumor this was, are “of greatest concern” in the colon. They come in three types: tubular, tubulovillous, and villous. The larger the size, the greater the cancer risk. Mine was large and on its way to becoming cancer. According to my GI doctor, I’d've been dead in another 5 years had I not had that colonoscopy and appropriate intervention. In other words, if I’d waited until the recommended age for a first colon cancer screening–age 50–I’d have already been dead for seven years. In fact, I would have died this year from colon cancer. My mind was saying, “This would have been It. This would have been the thing, in a different time, that would have killed me. My potential death was growing inside of me, and I managed to put a stop to it.”
It’s true: Colon cancer can be prevented Finding and removing polyps in the colon can prevent colon cancer from developing. But first, you have to have the screening. Because more than 90% of cases of colorectal cancer happen in people ages 50 or older, the starting age for screening is currently set at age 50. If you have symptoms like the following, though, don’t delay. If a GI doctor dismisses you as my first one did–that polyp of mine was probably growing in there for a few years–get a second opinion.
Blood in or on the stool (as I had)
Stomach pain or aches that do not go away (as I had)
Unexplained weight loss
A change in bowel habits (diarrhea, constipation, frequency)
A feeling of incomplete emptying
Colon cancer is associated with some risk factors. These include
Having previously had colon polyps or colorectal cancer yourself
A family history of polyps or colorectal cancer
A history of having inflammatory bowel disease (Crohn’s or ulcerative colitis; not to be confused with irritable bowel syndrome or IBS)
A family history of inherited disorders related to polyps of the colon
Of these factors, I thought going into my GI doctors that I had none. Only later did I learn that my father also had had some polyps found and removed, although of the more typical and less-threatening variety and at a later age (in his 50s). In addition, in the past year, my octogenarian maternal grandmother had a large colorectal cancer removed that had likely begun its evolution from a polyp years ago, but she had never undergone screening. I cannot stress enough how important it is for a family to share health history so that these risks can be known and for anyone to have appropriate screening either at the recommended age or in the presence of symptoms.
Speaking of family, there is my own. My having been diagnosed with a precancerous growth at age 38 means that my first-degree relatives–siblings, parents, children–should have screening at least by that age and preferably years before. There is some understandable reluctance to have a colonoscopy. Outside of the obvious ignominy of having someone shove a tube up your rectum while you lie anesthetized (I woke up during my second–yep, there’s a tube in there), there is the preparation for it. I’ve done just about every prep known to modern medicine, having now had five colonoscopies–all my follow-ups have been clear, and I don’t need another for four years now (!). Yes, they’re unpleasant, and they take quite a bit of willpower. You have to drink what they tell you, take the pills that they tell you, not eat when they tell you, and consume only what they say is OK. You’ll never want to see Jell-O or Gatorade again, and I can’t stare down a bowl of clear bouillon any more without feeling a tad nauseated. But the goal of a prep is a completely clean colon. The cleaner you get it, the more accurate your findings will be and the less likely you’ll have to do it again simply because you conducted–pardon me–a crappy prep. March is Colon Cancer Awareness month. Be aware and embrace the reality that polyps happen and that so far, finding them requires this daylong unpleasantness. But also embrace the fact that the prep won’t kill you. Instead, it will help you prevent a cancer that does, in fact, kill 50,000 people a year in the United States alone.
This year, five years after that first colonoscopy would have been the year I’d've been one of those people. Thanks to that procedure, I am instead alive and well enough to tell you about it, and my three young sons still have their mother. I’d starve for a week and drink Gatorade until I puked to make sure of that outcome. ————————————————————– By Emily Willingham, DXS Managing Editor
The stormy landscape of the breast, as seen on ultrasound. At top center (dark circle) is a small cyst. Source: Wikimedia Commons. Credit: Nevit Dilmen.
By Laura Newman, contributor
In a unanimous decision, FDA has approved the first breast ultrasound imaging system for dense breast tissue “for use in combination with a standard mammography in women with dense breast tissue who have a negative mammogram and no symptoms of breast cancer.” Patients should not interpret FDA’s approval of the somo-v Automated Breast Ultrasound System as an endorsement of the device as necessarily beneficial for this indication and this will be a thorny concept for many patients to appreciate.
If the approval did not take place in the setting of intense pressure to both inform women that they have dense breasts and lobbying to roll out all sorts of imaging studies quickly, no matter how well they have been studied, it would not be worth posting.
Dense breasts are worrisome to women, especially young women (in their 40s particularly) because they have proved a risk factor for developing breast cancer. Doing ultrasound on every woman with dense breasts, though, who has no symptoms, and a normal mammogram potentially encompasses as many as 40% of women undergoing screening mammography who also have dense breasts, according to the FDA’s press release. Dense breast tissue is most common in young women, specifically women in their forties, and breast density declines with age.
The limitations of mammography in seeing through dense breast tissue have been well known for decades and the search has been on for better imaging studies. Government appointed panels have reviewed the issue and mammography for women in their forties has been controversial. What’s new is the “Are You Dense?” patient movement and legislation to inform women that they have dense breasts.
Merits and pitfalls of device approval
The approval of breast ultrasound hinges on a study of 200 women with dense breast evaluated retrospectively at 13 sites across the United States with mammography and ultrasound. The study showed a statistically significant increase in breast cancer detection when ultrasound was used with mammography.
Approval of a device of this nature (noninvasive, already approved in general, but not for this indication) does not require the company to demonstrate that use of the device reduces morbidity or mortality, or that health benefits outweigh risks.
Eitan Amir, MD, PhD, medical oncologist at Princess Margaret Hospital, Toronto, Canada, said: “It’s really not a policy decision. All this is, is notice that if you want to buy the technology, you can.”
That’s clearly an important point, but not one that patients in the US understand. Patients hear “FDA approval” and assume that means a technology most certainly is for them and a necessary add-on. This disconnect in the FDA medical device approval process and in what patients think it means warrants an overhaul or at the minimum, a clarification for the public.
Materials for FDA submission are available on the FDA website, including the study filed with FDA and a PowerPoint presentation, but lots of luck, finding them quickly. “In the submission by Sunnyvale CA uSystems to FDA, the company stated that screening reduces lymph node positive breast cancer,” noted Amir. “There are few data to support this comment.”
Is cancer detection a sufficient goal?
In the FDA study, more cancers were identified with ultrasound. However, one has to question whether breast cancer detection alone is meaningful in driving use of a technology. In the past year, prostate cancer detection through PSA screening has been attacked because several studies and epidemiologists have found that screening is a poor predictor of who will die from prostate cancer or be bothered by it during their lifetime. We seem to be picking up findings that don’t lead to much to worry about, according to some researchers. Could new imaging studies for breast cancer suffer the same limitation? It is possible.
Another question is whether or not the detected cancers on ultrasound in the FDA study would have been identified shortly thereafter on a routine mammogram. It’s a question that is unclear from the FDA submission, according to Amir.
One of the problems that arises from excess screening is overdiagnosis, overtreatment, and high-cost, unaffordable care. An outcomes analysis of 9,232 women in the US Breast Cancer Surveillance Consortium led by Gretchen L. Gierach, PhD, MPH, at the National Institutes of Health MD, and published online in the August 21 Journal of the National Cancer Institute, revealed: “High mammographic breast density was not associated with risk of death from breast cancer or death from any cause after accounting for other patient and tumor characteristics.” –Gierach et al., 2012
Proposed breast cancer screening tests
Meanwhile, numerous imaging modalities have been proposed as an adjunct to mammography and as potential replacements for mammography. In 2002, proponents of positron emission tomography (PET) asked Medicare to approve pet scans for imaging dense breast tissue, especially in Asian women. The Medicare Coverage Advisory Commission heard testimony, but in the end, Medicare did not approve it for the dense-breast indication.
PET scans are far less popular today, while magnetic resonance imaging (AKA MR, MRI) and imaging have emerged as as adjuncts to mammography for women with certain risk factors. Like ultrasound, the outcomes data is not in the bag for screening with it.
In an interview with Monica Morrow, MD, Chief of Breast Surgery at Memorial Sloan-Kettering Cancer Center, New York, several months ago concerning the rise in legislation to inform women about dense breasts, which frequently leads to additional imaging studies, she said: “There is no good data that women with dense breasts benefit from additional MR screening.” She is not the only investigator to question potentially deleterious use of MR ahead of data collection and analysis. Many breast researchers have expressed fear that women will opt for double mastectomies, based on MR, that in the end, may have been absolutely unnecessary.
“There is one clear indication for MR screening,” stressed Morrow, explaining that women with BRCA mutations should be screened with MRI. “Outside of that group, there was no evidence that screening women with MR was beneficial.”
At just about every breast cancer meeting in the past two years, the benefits and harms of MR and other proposed screening modalities come up, and there is no consensus in the field. It should be noted, though, that plenty of breast physicians are skeptical about broad use of MR– not just generalists outside of the field. In other words, it is not breast and radiology specialists versus the US Preventive Services Task Force – a very important message for patients to understand.
One thing is clear: as these new technologies gain FDA approval, it will be a windfall for industry. If industry is successful and doctors are biased to promoting these tests, many may offer them on the estimated 40% of women with dense breasts who undergo routine mammograms, as well as other women evaluated as having a high lifetime risk. The tests will be offered in a setting of unclear value and uncertain harms. Even though FDA has not approved breast MRI for screening dense breasts, breast MR is being used off label and it is far more costly than mammography.
When patients raise concerns about the unaffordability of medical care, they should be counseled about the uncertain benefit and potential harms of such a test. That may be a tall bill for most Americans to consider: it’s clear that the more is better philosophy is alive and well. Early detection of something, anything, even something dormant, going nowhere, is preferable to skipping a test, and risking who-knows-what, and that is something, most of us cannot imagine at the outset.
[Today's post is from Patient POV, the blog of Laura Newman, a science writer who has worked in health care for most of her adult life, first as a health policy analyst, and as a medical journalist for the last two decades. She was a proud member of the women’s health movement. She has a longstanding interest in what matters to patients and thinks that patients should play a major role in planning and operational discussions about healthcare. Laura’s news stories have appeared in Scientific American blogs, WebMD Medical News, Medscape, Drug Topics, Applied Neurology, Neurology Today, the Journal of the National Cancer Institute, The Lancet, and BMJ, and numerous other outlets. You can find her on Twitter @lauranewmanny.] Ed note: The original version of this post contains a posted correction that is incorporated into the version you’ve read here.
The opinions in this article do not necessarily conflict with or reflect those of the DXS editorial team.
Double X Science is pleased to be able to repost, with permission, this important piece courtesy of author Christie Aschwanden and the Last Word on Nothing website, focused on the things that science teaches us we still don’t know…but want to find out.
You’ll notice that the focus of this article is the way that the Komen foundation blames the individual with the disease for having it, relying on what Aschwanden aptly calls “breast cancer’s false narrative.” This “blame the person” tactic seems to be especially common in women’s health, with an emphasis on the way a woman allegedly does the wrong thing or thinks the wrong thoughts or doesn’t work hard enough willing herself well, making her disease her fault, instead of the fault of nature, mutations, cell division gone astray, and the countless other molecular factors that accumulate into what we call “disease.” In the case of breast cancer, it’s not one monolith of disease that the decision to screen will magically stop.
Many thanks to Christie Aschwanden and the Last Word on Nothing for graciously agreeing to this important repost. –The DXS Editors ——————————————–
Is breast cancer threatening your life? This Susan G. Komen for the Cure® ad leaves no doubt about who’s to blame —you are.
Over the last week or so, critics have found many reasons to fault Susan G. Komen for the Cure®. The scrutiny began with the revelation that the group was halting its grants to Planned Parenthood. The decision seemed like a punitive act that would harm low-income women (the money had funded health services like clinical breast exams), and Komen’s public entry into the culture wars came as a shock to supporters who’d viewed the group as nonpartisan.* Chatter on the intertubes quickly blamed the move on Komen’s new Vice-President of Public Policy, Karen Handel, a failed GOP candidate who ran for governor in Georgia on a platform that called for defunding Planned Parenthood.** Komen’s founder, Ambassador Nancy Brinker, awkwardly attempted to explain the decision, and yesterday, Handel resigned her position. (Whether she’ll receive a golden parachute remains unclear, but former CEO Hala Moddelmog received $277,864 in 2010, despite her resignation at the end of 2009.)
The Planned Parenthood debacle brought renewed attention to other controversies that have hounded Komen in recent years—like its “lawsuits for the cure” program that spent nearly $1 million suing groups like “cupcakes for the cure” and “kites for the cure” over their daring attempts to use the now-trademarked phrase “for the cure.” Critics also pointed to Komen’s relentless marketing of pink ribbon-themed products, including a Komen-branded perfume alleged to contain carcinogens, and pink buckets of fried chicken, a campaign that led one rival breast cancer advocacy group to ask, “what the cluck?”
But these problems are minuscule compared to Komen’s biggest failing—its near outright denial of tumor biology. The pink arrow ads they ran in magazines a few months back provide a prime example. “What’s key to surviving breast cancer? YOU. Get screened now,” the ad says. The unmistakeable takeaway? It’s your fault if you die of cancer. The blurb below the big arrow explains why. “Early detection saves lives. The 5-year survival rate for breast cancer when caught early is 98%. When it’s not? 23%.”
If only it were that simple. As I’ve written previously here, the notion that breast cancer is a uniformly progressive disease that starts small and only grows and spreads if you don’t stop it in time is flat out wrong. I call it breast cancer’s false narrative, and it’s a fairy tale that Komen has relentlessly perpetuated.
It was a mistake that most everyone made in the early days. When mammography was new and breast cancer had not yet become a discussion for the dinner table, it really did seem like all it would take to stop breast cancer was awareness and vigilant screening. The thing about the false narrative is that it makes intuitive sense–a tumor starts as one rogue cell that grows out of control, eventually becoming a palpable tumor that gets bigger and bigger until it escapes its local environment and becomes metastatic, the deadly trait that’s necessary to kill you. And this story has a grain of truth to it—it’s just that it’s far more complicated than that.
Years of research have led scientists to discover that breast tumors are not all alike. Some are fast moving and aggressive, others are never fated to metastasize. The problem is that right now we don’t have a surefire way to predict in advance whether a cancer will spread or how aggressive it might become. (Scientists are working on the problem though.)
Some breast cancers will never become invasive and don’t need treatment. These are the ones most apt to be found on a screening mammogram, and they’re the ones that make people such devoted advocates of mammography.H. Gilbert Welch of the Dartmouth Institute for Health Policy and Clinical Practice, calls this the overdiagnosis paradox. Overdiagnosis is what happens when a mammogram finds an indolent cancer. A healthy person whose life was never threatened by breast cancer is suddenly turned into a cancer survivor. She thinks the mammogram saved her life, and so she becomes an advocate of the test.
Some cancers behave just the opposite of these slow-growing, indolent ones. Researchers now know that some cancers are extremely aggressive from the start. There’s simply no such thing as “early” detection for these cancers. By the time they’re detectable by any of our existing methods, they’ve already metastasized. These are the really awful, most deadly cancers, and screening mammograms*** will not stop them.
So let’s recap. Getting “screened now,” as the Komen ad instructs can lead to three possible outcomes. One, it finds a cancer than never needed finding. You go from being a healthy person to a cancer survivor, and if you got the mammogram because of Komen’s prodding, you probably become a Komen supporter. Perhaps a staunch one, because hey—they saved your life and now you have a happy story to share with other supporters. Another possibility is that the mammogram finds a cancer that’s the really bad kind, but you die anyway. You probably don’t die later than you would have without the mammogram, but it might look that way because of a problem called “lead time bias.” The third possibility is that you find a cancer that’s amenable to treatment and instead of dying like you would without treatment, your life is saved. Here again, you’re grateful to Komen, and in this case, your life truly was saved.
But it’s not quite that simple. Some people really are helped by mammography screening, and if you’re the one helped, it’s hard to discount that one life. Right now mammography is the best tool we have. Welch, who has spent more time than probably anyone else in America studying this issue, has deemed the decision about whether or not to get breast cancer screening a “close call.”
Reasonable women can decide that for them, the potential benefits outweigh the risks. Other reasonable women will decide that for them, the risks outweigh the potential benefits.
Komen isn’t wrong to encourage women to consider mammography. But they’re dead wrong to imply that “the key to surviving breast cancer” is “you” and the difference between a 98% survival rate and a 23% one is vigilance on the part of the victim. This message flies in the face of basic cancer biology.
How dare Komen so FALSELY suggest that a screening mammogram is all it takes to avoid metastatic breast cancer? How dare Komen so CRUELLY suggest that “not getting screened for breast cancer in time” would be THE reason and the FAULT of the person with metastatic disease who misses out on all the experiences and joyous events of a long and healthy life that so many others take for granted? How dare you, Komen? How dare you?Continue reading →
On February 6, 2012, the world lost not one, but two amazing women to breast cancer: Susan Niebur, also known as WhyMommy; and Rachel Cheetham Moro of The Cancer Culture Chronicles. Both women spoke candidly about their individual battle with metastatic breast cancer. Their deliberate determination to beat this thing was always apparent, whether they showed it through humor (see this “Favorite Things” post by Rachel), or through a deeply rooted sense of gratitude, as exemplified by Susan’s “Going HOME!” post.
Unfortunately, Susan and Rachel are not anomalies. They are but two of the approximately 40,000 women (in US alone) projected to lose the battle in 2012.
Breast cancer affects 1 in 8 women. These odds put someone you know – your wife, mother, sister, girlfriend, aunt, daughter, friend, cousin, neighbor, co-worker – at risk.
In the “Goodbye” post written by Susan Niebur’s husband Curt (WhyDaddy), he made the following request:
To help uphold that request, and to honor Susan, Rachel, and the thousands of women and men diagnosed with breast cancer each year, we at Double X Science have compiled a list of breast cancer charities. If you have the means, please take time to donate.
What I have learned from Susan Niebur is that there is more than one kind of breast cancer, and lumps are not required. This foundation is dedicated to researching the mechanisms involved in the development of inflammatory breast cancer (IBC), a rare but extremely aggressive cancer comprising 1-5% of all breast cancer cases in the US.
Located in the Houston area, The Rose is a non-profit organization dedicated to providing women with breast health essentials, such as mammography screening, diagnosis, support, and treatment to any and all women, regardless of ability to pay.
This brazen organization is dedicated to eradicating breast cancer BY JANUARY 1, 2020. That’s less than 8 years from now. Imagine that. The NBCCF encompasses hundreds of smaller organizations and represents millions of patients, along with their health care professionals, family, friends, etc.
Contrary to popular belief, breast cancer affects younger women too. In fact, I have two friends that were diagnosed before the age of 30. The mission of this organization is to help scientists and physicians better serve young women affected by breast cancer.
The mission of the National Breast Cancer Foundation is to increase breast cancer awareness and education. They’ve also partnered with medical centers across the US to provide free mammography services and diagnostic services to underserved women.
This is a national education and support organization dedicated to help those who are newly diagnosed, in treatment, or are beyond treatment stages. It also serves as a support network for the friends and family of those affected by breast cancer. They have a Survivor’s Helpline – (888) 753-LBBC (5222) – run by trained volunteers and sponsor many conferences in the name of breast cancer education.
Breastcancer.org serves to educate those living with breast cancer, providing the most up to date scientific literature so that those affected by breast cancer can make informed decisions on their health and well being. You can watch a video about how Breastcancer.org has helped those in need.
If you would like to learn more about these organizations, including how they compare to others across the country, you can go to Charity Navigator.
A big brother, practicing the art of allofathering.
By Emily Willingham, DXS managing editor
On Mother’s Day, scientist and blogger Kate Clancy wrote an excellent post at Scientific American about allomothers, the people in your circle of friends and family who support mothers in their mothering. In thanking the allomothers in her life, Clancy included in that list her husband because men can be allomothers, too. Although this site is called Double X because we want to bring evidence-based science–and yes, some snark–to women, tomorrow is Father’s Day. So today, we’re shifting into XY gear and talking about allofathers.
We all have or had fathers. Some for better, some for worse, some we may never have even seen. Many of us also have had other men in our lives who participated in a father role or who supported our fathers in the same way that Clancy writes about supporting mothers. The funny thing is, a Google search on “allofathers” confuses Google so badly that it actually declines to do that search and instead offers a search on “allomothers.” When you force it to search “allofather,” you get only three pages of scanty hits, some of which reference a more general “alloparenting.”
Why no love for the allofathers, Google? Fathers these days need allo support as much as mothers, or at least, the fathers I know do. As Paul Raeburn writes in this Father’s Day piece:
The grindingly slow recovery of the economy is making it hard for fathers to earn enough to help support their families. Those who do have jobs are working more hours, taking time away from checkers and family dinners. In many families, both parents are working, leaving less time for fathers and partners to work on their relationships with each other.
He notes that fathers these days thrive in a habitat that allows the time with family, time to do things other than make a living wage, although that remains an important feature of fatherhood and a key goal of every father I know. In fact, that emphasis means that my spouse–who is also the father of my children–is at work right now, on Saturday, after already putting in overtime through the week. Indeed, he may have to work tomorrow, on Father’s Day, and is looking at a midnight deadline Monday night. There will be no games of chess with Dad this weekend.
The work is difficult enough and in a trying environment. And pushing against this need to work hard and keep a job is also a desire to have the kind of family time those of us in the United States have come to expect on weekends, particularly when we work salaried weekday jobs that ostensibly promise weekends off. That means that on top of the anxiety associated with stacking 20 or 30 extra hours onto a 40-hour work week to meet a tough deadline, my husband and my children’s father also feels angst about this inability to be a part of our family time. These are first-world problems, I realize, but that doesn’t make them any less real for us and our children.
So I’m allofathering for him. Yes, I’m the mother, but I’m also supporting my husband’s fathering role, in part by doing things that assure him that we’re all OK, and in part by doing things with our sons that people might think of as stereotypically “dad” activities: fishing, baseball, football, soccer, hiking. But I also have taken on the things he usually does around the house, like emptying the dishwasher Every Single Time, vacuuming, and doing the laundry. Bless the man, he usually does all the laundry. But I do miss the other allofathers in our lives.
We no longer live a stone’s throw or a short-ish drive from our extended family, but when we did and still when we visit, the allofathers are abundant. My children have uncles who take them fishing, monitor group infighting among nine cousins, catch snakes with them, play football and soccer with them, and take them on hikes and (fruitless) dove hunting. My husband does his share of allofathering for their children, reading books and playing with the youngest, making dinners, and serving as an ever-necessary playground monitor. And my children have a grandfather who builds things in his shop for them, closely monitors their BB gun target practice, wanders for hours with them in nearby woods to find animal bones, and patiently acknowledges every single mystifying LEGO construction and rambling imaginary story surrounding it.
All of these alloparents expand the parenting and support and safety net for my children. They are the village raising my sons, and my children trust them implicitly. These allofathers summon up reserves of energy they probably didn’t know they had and in spending this time with their nephews or grandchildren, they add layers of complexity and different insights from father figures that my children wouldn’t otherwise have. They also model for children like my sons the many roles a man can have through life.
As humans, we fit several features of species that engage in this extra-parental parenting, including typically having a single offspring at a time, a relatively small number of offspring over a lifetime, and an extended period of parental investment, and being part of a highly social species with tight family bonds. It may be that as our culture evolves so that the father role expands into what was previously considered maternal territory, we need to more closely consider allofathers as well as allomothers. These factors that characterize us as an alloparenting species can add up to benefits and greater success for mothers and fathers and children alike. At any rate, I know that’s been the case in our family.
When I was growing up, I had four grandmothers and four grandfathers. Half of them were “step” grandparents, obviously, but I loved the fact that I had all of these grandparents, blissfully unaware in my childhood of the fractures and angst that had led to their presence in my life. Among these step-grandparents was the man who married my mother’s mother. They met over square-dancing, he a handsome architect, she a tiny, fiery single mother who could sew some kick-ass square-dancing outfits.
Through various unanticipated turns in Life’s do-se-do, after marrying my grandmother, this man one day became father to two of my cousins. From their early childhoods, he has been their father, even though for the rest of us cousins, he was our step-grandfather. Along with my grandmother, he committed himself to rearing them and being their parent, and today, in part thanks to his steady, calm presence, they are successful, happily married parents themselves. Without his stabilizing influence, their paths might have been much less straightforward.
While what my step-grandfather did crossed over from alloparenting to being an actual father, my own children have a step-grandfather of their own who, I think, epitomizes allofathering. When we visit, he has a ready store of caps available for all the cap guns he buys them by the dozen (if you think there are a lot of guns in this post, there are; it’s Texas). He actually builds–builds–go carts and other motorized vehicles to take them buzzing around the large property where he and my mother live and maintains a fleet of bicycles for them to ride. He will drop anything to run a quick errand just because one of the youngest generation expresses a wish for a certain treat or toy. Ask him to make you an ax from a stick and a rock, and he’ll do it masterfully. He attends every volleyball, baseball, or basketball game my niece and nephew have and has simply been a steady and much-loved allofather figure in the lives of all of the youngest generation in our family.
When I think of men like these who enter into lives already structured around complex family interactions and who take on without comment or resentment the care and loving of the children in that family, I wonder if I could be as kind or selfless. Of course, I hope that I could. These little people are, after all, children, and they need love and support and classic grandparental spoiling and an understanding that parenting and parental love come in different forms and different ways of expression. To all the allofathers in my life, I–and my children–are extremely grateful. To all the fathers and allofathers out there, happy Father’s Day. And may I say, I think you all warrant more Google hits.
***Special thanks to Kate Clancy for her post on allomothers and to Paul Raeburn for his post about the role of fathers today, which certainly drove my thinking about this topic.***
These views are the opinion of the author and do not necessarily either reflect or disagree with those of the DXS editorial team.