I’m sitting in a restaurant in Dallas, having dinner with my old friend, Deanna. I used to live here, from 1983 until 1997, and she hired me for a job at the public TV and radio stations. We’ve been friends ever since.
Tonight, we talking about — then not talking about — her upcoming lumpectomy, while we drink wine and eat tapas. She’s scared to death, of course. I try to reassure her that it’s all right to be scared, perfectly normal to feel as if she’s going nuts. She’s wrong if she thinks I’m braver than she is. I was scared, too. But, like her, I simply did what I had to.
The only thing I don’t quite understand, I tell her, is her fear about going under anesthesia for surgery. I tell her I think being conscious is highly overrated. Better to pass out entirely and miss certain unsavory events in your life, when people bearing scalpels are headed in your direction.
What’s particularly haunting about this conversation is that we sat across the table from each other at another Dallas restaurant more than 14 years ago to talk about my own recent diagnosis of breast cancer. I was staggered by the diagnosis, the three positive lymph nodes, my upcoming chemo — so staggered that I had simply stopped taking in information in direct and obvious ways. You really do go crazy at times like this, you really do become numb and stupid from shock.
I can remember watching Deanna very closely and watching her eyes fill with tears when she looked at me. Deanna, from a strong, flinty pioneer family, was rarely emotional. If she was crying, then I must really be sick, I told myself. A few weeks later, hearing that one of the chemo drugs I would be on, adriamycin, was so toxic it would immediately scar your skin if a drop spilled on you and was also potentially lethal to your heart, I had a similar insight: Good grief, if they’re pumping me full of this scarlet drug with a list of side effects roughly the length of War and Peace, I must be in pretty sad shape.
Anyway, the point is, cancer and the fear of both cancer and death are overwhelming. For a long time, you’re making decisions — big, important decisions — when you can’t think straight, when you have to rely on people around you (including this long list of doctors whose specialties you’ve never even heard of before) for advice and counsel, you simply have to trust them or you feel you might, very possibly, lose your mind.
I’ve been thinking about all of this in the wake of the recent controversy about mammograms. Some of my friends, who were young when their cancers were detected by mammograms, feel as if they’re being told their lives aren’t worth saving through routine mammograms beginning at the age of 40.
But I think there’s something else at work here that infuriates me. I think, for the past 15 or 20 years, women have been misled by hyped statistics about breast cancer’s prevalence, then promised they would be kept safe by routine screenings and self-exams. It has never been that simple.
“Was it detected early?” That’s the question everyone asks. But it’s never been that clear. Some cancers are so aggressive they will kill you, no matter what you do. Others, even if left alone and untreated, will never pose a threat. Others, like mine and, I’m assuming, Deanna’s, can be treated and arrested. In fact, one of the very first things you learn when you’re diagnosed with cancer is that it’s not a single disease: It’s either 100 different diseases or maybe 200. If experts couldn’t even agree on that number, I kept thinking, what in the hell good are they going to do me?
“Do you think there’s enough awareness about breast cancer?” a college student making a film for a course asked when she interviewed me a couple of years ago.
Hell, yes, I said. Plenty of awareness — maybe, even a disproportionate amount. There are other terrible diseases, like diabetes, that don’t get nearly the awareness or unholy respect breast cancer does.
I think there are people with the best of intentions out there, marching and raising money and awareness for breast cancer — but I also think they’re insulting women’s intelligence with their simplistic answers and rah-rah attitudes and their sappy little pink ribbons.
We don’t have a cure for cancer yet, we’re still not looking for what causes it in the first place, and we sure as hell don’t have a panacea. No wonder people get deeply upset when they figure that out.
(Copyright 2009 by Ruth Pennebaker)
Read one of my favorite posts about being a long-term survivor
Ruth, my mother had an incisional biopsy when she detected a lump in her breast. Turned out to be non-malignant. Doctors said her breasts are “densed”. I think BSE is still important, if not mammograms.
I tried to raise money for cancer this year, in my neighborhood, in memory of the husband of one of my best friends (pancreatic cancer) and the husband of a cousin (prostate cancer).
I have been doing a lot of thinking about the causes of cancer, so much more prevalent than when my children were small that it must have something to do with the environment. I wish some of the energy of the pink ribbon folks would go into demanding quicker answers from the EPA, which intends to study 104 chemical contaminants over a period of years.
Oh, Ruth, I’m with you all the way. One of the things most people (unless they’ve been had the disease themselves) don’t realize is the complexity of it all. From diagnosis to treatment and recovery, there are just too many variables to tie them up neatly. I lost a close friend to breast cancer when it was detected “early” and another who lived much longer than the “experts” predicted.
My sis was diagnosed with the really “bad” kind of breast cancer this summer. She has chemo again tomorrow, will start radiation in January and faces another 9 months of a less-hideous chemo in 2010. Even though, they “caught it early,” they are treating her like it’s much, much worse.
All of us are still reeling.
I’m sorry to hear about your friend. I’ll keep her in my heart, along with others needing good mojo.
Thanks for writing this. As a professional in the field I agree that there is plenty of awareness on breast cancer especially as compared to some other diseases that also deserve attention. However as a daughter of someone recently diagnosed, I also see the other side.
I was one of those who probably shouldn’t have had a mammogram. Or at least one that was being read as a tale told by idiots. It showed a suspicious lump, which required a biopsy under anesthesia. When I awoke, I learned that the surgeon had cut out the wrong section of breast. And when he finally remedied his mistake, I learned that the next piece of breast removed was in fact benign. But I can’t really generalize from this double trauma. I was just lucky.
My dad just had successful surgery for colon cancer done by a master, and he was able to leave the hospital a day early, and no chemo or radiation will be needed. Was he just lucky? I don’t know. It’s the luck of the draw these days when you go under.
Those recommendations are based on studies from the “new” field of “evidence based health care”. Mammograms 3 yearly after the age of 50 and none before are what is offered in England under the National Health Service. I always thought it was a cost saving measure and was interested to find that it might instead be good clinical practice.
Meanwhile, as the controversy raged, I heard someone interviewed on NPR saying it was “going to be very difficult to get Americans to accept evidence based health care”. And I wondered why anyone would not want their health care to be evidence based.
That’s what I want my care based on. But I want to be pretty sure no one is doctoring (as it were) the evidence for either political or fiscal reasons. Just the evidence, please. Then we can decide whether the screening is worth the cost — in false complacency, overtreated cancers, or scarce resources. Those are different debates.
Maybe the evidence, like the disease, is too complicated. But it is good to ask the questions.
This post was very moving to me. I really -got- how you were there, really there, in the moment with your friend. Though the details may be different, many many women can and will relate.
Awfully glad you’re still here, chica. And I’m keeping Deanna in my thoughts and prayers. I’m counting on that pioneer stock to pull her through this scary time.
As an American Cancer Society employee and a woman who had a stressful false positive on a mammogram this year, I feel compelled to pass this along from Cancer Update, a publication for lawmakers that I manage.
American Cancer Society Stands By Mammography at Age 40
In November, the United States Preventive Services Task Force (USPSTF) announced that it no longer recommends routine screening for women between the ages of 40 and 49. Because so many women are diagnosed with breast cancer in their forties, this stance caused a firestorm of controversy.
“With its new recommendations, the USPSTF is essentially telling women that mammography at age 40 to 49 saves lives—just not enough of them,” said Otis W. Brawley, MD, Chief Medical Officer for the American Cancer Society.
“The American Cancer Society’s medical staff and volunteer experts overwhelmingly believe that the benefits of screening women aged 40 to 49 outweigh its limitations,” said Dr. Brawley. “Our experts make this recommendation having reviewed virtually all the same data reviewed by the USPSTF, but also additional data that the USPSTF did not consider.”
Like the USPSTF, American Cancer Society experts found that mammography has limitations—some who are screened have false alarms, some cancers are missed, and some undergo unnecessary treatment—and these occur more often for women in their forties when compared to older women. Despite these limitations, the Society recognizes the lives saved and recommends mammography to start at age 40.
“As someone who has long been a critic of those overstating the benefits of screening, I use these words advisedly: this is one screening test I recommend unequivocally, and would recommend to any woman 40 and over, be she a patient, a stranger, or a family member,” said Dr. Brawley.
The USPSTF reports that screening 1,339 women in their 50s to save one life makes screening worthwhile in that age group. Yet USPSTF also reports that screening 1,904 women ages 40 to 49 in order to save one life is not worthwhile. The American Cancer Society believes that in both cases, the lifesaving benefits of screening outweigh any potential harms.
Approximately 17 percent of breast cancer deaths occur in women who are diagnosed in their 40s and 22 percent occur in women diagnosed in their 50s.
Here in Ontario. mammograms are provided free to women over 40 every two years. Because I’m taking part in a cancer prevention drug trial, I’m given a mammogram every year. Never having had breast cancer, I’m utterly bitched and bewildered by all the conflicting advice on mammograms versus BSE. Because I have dense, lumpy breasts, I never really mastered BSE and gave up trying years ago. Hopefully my husband will let me know if he notices anything different.
I hope your friend comes through, Ruth. Your experience, as much as your friendship, may give her some comfort when she’s looking around, as you did, for signs of what might be ahead of her.
I think the fear of going under is partially about death but also about losing control. I have an allergy to many things, so I also have a fear of being allergic to the anesthesia and no one noticing. And there are always those horror stories you hear about people going in to have an ingrown toenail removed and waking up to learn that someone has amputated their arm. So those fears tend to haunt me, too.
I have found that I am more comfortable with the idea of death now than I’ve ever been. But I have a horrific fear of leaving my daughter motherless. That scares me more than the idea of not being here.
Amen to the part about diabetes…
If you haven’t already seen Barbara Ehrenreich’s latest book “Bright Sided: How the Relentless Promotion of Postive Thinking has Undermined America” you should. One of her chapters deals with this issue. Ehrenreich had breast cancer and she writes about her response to those who told her she shouldn’t be angry and needed to “just think postive and you’ll get better.” Your comment about “rah-rah” attitudes and pink ribbons is right on – although even for me, a skeptic at heart, there does need to be some of that postive attitude. Even if it doens’t cure you, it sure makes it easier for you and those who are trying to support you during a difficult time. Of course, I would also like to see better detection methods, with fewer false postives. As someone who used to work in breast cancer research, I know we can do better.
Susan — I don’t entirely disagree with what you say about a positive attitude, but do think cancer survivors — especially women — are already under entirely too much pressure to be optimistic. I think it’s healthier and more realistic to feel what you really feel, which will include anger and other darker emotions, instead of faking what will please everyone else or make their lives easier. Which is where support groups can be quite helpful. Sometimes, I felt no one but other cancer survivors understood me.
I am sending good thoughts and prayers to your friend. And grateful that you survived and can write so passionately and honestly about your experience.
It is confusing – this new study out, about doing mammograms at 50 and over rather than 40.