But did it really save her life?

Posted: November 14, 2013 | Author: | Filed under: breast cancer | Tags: , , , , , , , | 11 Comments

Amy Robach, an anchor on Good Morning America, underwent a bilateral mastectomy today because she was diagnosed with breast cancer following a live, on-air mammogram last month. She credits that mammogram with saving her life.

Robach is a 40-year-old  mother who lives an active, healthy lifestyle and has no family history of breast cancer. Her diagnosis came as a tremendous shock because she had no symptoms or reason to think she was anything other than the picture of health. She wants to fight her cancer as aggressively as possible. I know exactly how she feels. I too was 40 years old when I was diagnosed. My kids were 8 and 10. I lead an active, healthy lifestyle. I opted for a “scorched Earth” attack on my cancer.

I’m in no way challenging her decisions or judging her motivations, because hers are the same mine were. At the time I was diagnosed, my one and only goal was to rid my body of the cancer so that I could spare my kids the horror of watching their mom die before her time. I was willing to take the most aggressive road in exchange for a cancer-free life.

What I am challenging, however, is the rampant, panacea-esque assumption that routine mammograms save lives. Everyone loves a “feel good” story, and no cause stirs up quite as much “feel good” stuff as breast cancer. Wrapped in a pink ribbon, glitzed and glammed to high heaven and jacked-up as feminine and pretty, breast cancer is the cancer. All the cool celebrities are getting it, and everyone loves to hear that more “awareness” and more screenings mean more lives saved. We hear much of celebs being brave in the face of a breast cancer diagnosis, yet we learn little of whether their cancer warranted the treatment they chose.

While the “mammograms save lives” story makes people feel good and likely sells a whole lot of airtime, it’s not exactly true. But we want to believe it, despite scientific evidence telling us otherwise. While the evidence is sound, how many women opt out of a mammogram because they know that the routine screening has little to no impact on mortality? Conversely, how many women are diagnosed with relatively harmless breast cancer yet choose the most aggressive treatment? I know one such woman, for she is me. I am her. I knew my form of breast cancer was not terribly threatening, and I was provided all the stats & facts & figures and options to support that. Yet my gut instinct was to scorch that Earth.

A 2012 New England Journal of Medicine study looked into whether screening mammograms has had an impact on breast cancer mortality. After culling through 30 years of statistics, the conclusion: screening mammograms increase the cases of early-stage breast cancers that are detected, but that detection of advanced breast cancers has not changed.

Because the number of cases of advanced-stage breast cancer has not changed in 30 years of routine screenings, researchers concluded that mammograms are not successful in saving lives. Studies in the United Kingdom, the Netherlands, Italy, Switzerland, Norway, and Australia have come to the same conclusion.  One thing that has changed during the last 3 decades: increased diagnoses and surgeries.

This Nautilus article echoes the 2012 NEJM study. About Robach’s on-air mammo, author Amos Zeeburg says:

“The [Good Morning America] episode was presented as a triumph of medical science, an even more compelling push to get tested: Robach had no idea she was in grave danger, the screen had saved her life, and it might do the same for any woman watching. [Robach said] ‘If I got the mammogram on air, and if it saved one life, then it’s all worth it. It never occurred to me that life would be mine.’ It’s an inspiring conclusion, and it certainly makes for great TV, but the show’s lesson about screening mammograms is highly misleading. In a world of limited medical resources, it may even be harmful.”

So what’s a woman to do? Our doctors recommend a baseline mammogram annually starting at age 40. Celebs implore us to get our mammograms. Every October there’s enough “awareness” to scare the bejeezus out of a normally rational woman. Every time we turn around, someone else we know — in real life or from TV — is diagnosed with breast cancer, and everyone believes that early detection saves lives.

Nautilus author Zeeburg says: “The big problem with screening is that it tends to find cancers that are not very dangerous—’indolent’ ones that don’t grow quickly, will never metastasize to other organs, and might even go away on their own—while missing the truly deadly ones, which grow and spread too fast to get caught in any case. ”

Noted breast cancer docs agree.

Dr Susan Love said, “I really don’t think we should be routinely screening women under 50. There’s no data showing it works.”

And for women younger than 50 who follow the rules and get a yearly mammogram, Dr Love says “It’s radiation without much benefit.” She notes that most European countries recommend screening every other year, and their breast cancer mortality rates are no higher than ours.

Dr Silvia Formenti, head of radiation oncology at NYU’s  Langone Medical Center said the emphasis on mammograms for everyone might have given the public the impression that screening could prevent cancer. “It’s a giant misconception,” she said. Furthermore, she’s not a fan of overtreating indolent cancers but worries about the diagnoses “turn them into cancer patients and erodes their peace of mind forever. We take away the innocence of being healthy and not having to worry about cancer. The psychological cost of becoming a cancer patient is underrated.”

Amen, sister.

But all these dissenting voices don’t clear up the question women face regarding mammograms. After my OB-GYN felt a teeny-tiny lump, she sent me for a diagnostic mammogram, which led to a couple of biopsies and then diagnosis. My cancer was determined to be indolent, yet I still chose the scorched-Earth option. Maybe I wouldn’t have reacted as surely and as strongly had I not watched my mom die of cancer and if I didn’t feel a gigantic, never-ending void in my life after she died. But how much does the constant barrage we receive about early detection saving lives contribute to such sure and strong decisions about our course of treatment? I went into my bilateral mastectomy eyes wide open and perhaps too well-informed about what I was getting myself into (absent the post-mastectomy infection that ended up being waaaaaay more perilous than the actual cancer). I went in feeling 100 percent certain about my decision. Yet now I wonder: what would have been the risk of just watching that teeny-tiny lump and seeing what, if anything, changed from year to year? How risky is it to live with a teeny-tiny lump of indolent breast cancer for years?

How many of us would be willing to play those odds if we weren’t barraged with messages about mammograms saving lives?

I don’t know the answer. I can’t say if I would have changed anything about my scorched-Earth policy; hindsight is perfect, after all. But I do wonder how much the “early detection” and “mammograms save lives” rhetoric contributes to the decisions we do make when facing down the pink beast.

I think Zeeburg says it best: “The surprising inefficiency of mammograms doesn’t mean they need to end, but that they should be reasonably evaluated, not treated as our divine shield against cancer, administered to everyone with breasts, and paired unquestioningly with the most aggressive treatments available.”

Care page, HAWMC day 4

Posted: April 4, 2013 | Author: | Filed under: breast cancer | Tags: , , , , , , , | 7 Comments

Today’s mission in the Health Activist Writer’s Month Challenge: Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one.

Consult the mainstays such as Breast Cancer Action, and Think Before You Pink, and Dr Susan Love Research Foundation, and breastcancer.org, and The Rose. Consulting “Dr Google” once a diagnosis has sunk in is something most people do.

Follow a blog that appeals to you. Whatever flavor you prefer — spiritual, snarky, research-oriented, or off-the-cuff like this little blog — there’s a blog out there to meet your needs. Among these blogs, you’ll find posts such as this and posts such as this with practical advice from those who’ve been there. Much of this information is rather like on-the-job training; you don’t know what you need to know until you need to know it. Take the hard-won wisdom from those who have walked this walk before you.

My best piece of advice, in a sea of good advice, though is this: Do what you believe in your heart of hearts is best for you. Whether a prophylactic bilateral mastectomy instead of a lumpectomy, whether undergoing reconstruction or flaunting the flat & fabulous look, or whether pursuing a second or a third or a fourth opinion. Follow your instincts and listen to your gut.tumblr_mefqlvRiq41qlp3rfo1_1280

 

 

 

 

If not Komen, then who?

Posted: October 12, 2012 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , , , , | 15 Comments

Because it’s Pinktober, the month for breast cancer “awareness,” you can’t swing a cat without hitting some form of pink merchandise allegedly deemed charitable and “for the cure.” Now, before all you cat lovers get up in arms, I wouldn’t really swing a cat, it’s just an expression from my neck of the woods. I’m not a cat person and have never had one as a pet, but I believe in animal rights for all critters, including cats.

Before I was diagnosed with the dreaded disease and in the early days of my cancer “journey,” when I thought of BC charities, I thought of Susan G Komen for the Cure. It wasn’t until I became better educated, as a member of club to which I did not want to belong, that I learned  how shockingly little of Komen’s resources actually go toward “the cure.” The much-beloved blogger Rachel Moro of The Cancer Culture Chronicles deserves the credit for my education; to see how beloved she was, click here. Sadly, Rachel died from metastatic breast cancer in February at age 42. Words fail me when I try to explain how instrumental and important Rachel is (present tense very much intended) in the ongoing march toward transparency in BC charities and in dethroning Komen as the go-to breast cancer charity.

Rachel was tireless in her efforts to remove the emphasis from awareness and place it where it belongs: on research. She wrote so eloquently and so passionately:

Education, screening and treatment won’t “cure” my cancer.  Sure, by being “educated” I might be able to find out more about my particular type of breast cancer. By being “screened” I might be able to see if my cancer has spread.  By being “treated” I might be able to keep the cancer I already have under control.  But will any of these activities result in me being cured? No. The only hope that my cancer will be cured, is by research and research alone. The only way that breast cancer will be prevented, given that many of those diagnosed have none of the known risk factors, is through research.  Indeed, the only way we can “end breast cancer forever” is with research.  Education, screening and treatment activities deal with finding and treating cancers we already have, not curing them and not ending breast cancer now or forever.  Period. Spending anything less than the bulk of its resources on research, clearly does not support Komen’s mission of ending breast cancer forever.

I’ve said before that while Komen has done much to eliminate the shame and scandal that once was associated with breast cancer, in the 30 years that the organization has been working “for the cure,” not much has changed. 30 years. No cure. Nothing even close to a cure.

The statistics are alarming. Being diagnosed with cancer is scary enough, but to also learn that advancements toward a cure are nonexistent is terrifying. The American Cancer Society estimates for 2011 predicted that some 230,480 women would be diagnosed with an invasive breast cancer, and an additional 57,650 women would be diagnosed with an in situ breast cancer. For the uninitiated, in situ breast cancers are located within the milk ducts (ductal carcinoma in situ, or DCIS) or breast lobules (lobular carcinoma in situ or LCIS), in the same spot the cancers began. Invasive breast cancers are those that originate in the ducts or lobules but have broken through to invade surrounding breast tissue. The majority of breast cancers are invasive, and many women, including yours truly, find themselves with both in situ and invasive cancers, both at the same time; sometimes in the same breast, even.

The ACS reports that since 2002, breast cancer incidences rates have remained relatively stable. So in the 30 years that Komen has been promoting its pursuit “for the Cure” and in the last decade of ACS records, not much has changed. What needs to change is the shift from “awareness” to research. As Rachel so astutely pointed out, the best path “for the cure” is through research. What causes breast cancer? What makes it recur? How can it be prevented?

Now that we know that Komen hasn’t really done all that much toward finding a cure for breast cancer, the question becomes, if not Komen, then who? My blog friend at I’ll Drink to That raised an important question in a comment to this blog post when she asked, “Who should my money go to? I don’t want it to go to pink socks for football players, or stupid tshirts or pink nail polish – I want it to make a difference.”

Who should my money go to? Excellent question. The short answer, IMHO, is anyone but Komen.

And here, ladies and gentlemen, are some ideas.

Research-based charities: You’ve got the heavy-hitters, like  MD Anderson, right here in my fair city. There’s also The Dana Farber Cancer Institute in Boston, and Memorial Sloan-Kettering Cancer Center in New York City. Those 3 links take you to each org’s donations page.

Beyond the hospitals, there’s the Dr Susan Love Research Foundation. This is one of my faves, and I’ve blogged about it here and again here, because the focus is on the research that will stop breast cancer before it starts. What a dream come true! Breast Cancer Action is a fantastic organization founded by BC survivors whose goal is to “inspire and compel the changes necessary to end the breast cancer epidemic.” The Breast Cancer Research Foundation was founded by an executive from the Estee Lauder company, and the foundation funds nearly 200 scientists working on the breast cancer puzzle. The National Breast Cancer Coalition has declared January 1, 2020 as its deadline for ending breast cancer forever. I’d like to see that goal realized.

Local breast cancer charities: Google “breast cancer charity” and your city. You should get several hits that aren’t Komen-related. My favorite in my city is The Rose. Here, insured women and women who can pay for services help offset the costs for women who are uninsured or who cannot pay. It’s been estimated that women with insurance have breast tumors diagnosed when the tumors are about the size of a raspberry. Women without insurance are diagnosed with tumors the size of a tangerine.

Site-specific breast cancer charities: One of the most intriguing is My Hope Chest, which offers financial assistance to women for reconstruction-related expenses. Even with insurance, reconstruction is expensive. Metavivor focuses on research for metastatic breast cancer, or BC that has spread. Look Good Feel Better uses the idea that if cancer patients look more like themselves–and less like cancer patients–during treatment, their self-esteem will increase ans so will their ability to cope.

There are ways to help beyond spending money, too. If you are considering buying a pinked-out product that claims to help fight breast cancer, read the fine print to see which charity is receiving proceeds. If it’s a charity that isn’t actively working toward research, perhaps you can select another product or skip it altogether. Volunteer at your local hospital or breast screening center. Speak up: if the preponderance of pinked-out product placement bugs you, say so. Tell your grocery store manager that you don’t like it. If you come across campaigns that seem more about the boobs than about the disease, contact the purveyor and say so. Spread some cheer to someone on the cancer “journey” by reaching out to them, regardless of how well you know them. A text, email, or greeting card saying “I’m thinking about you and I support you” is a small effort with big impact. Join Dr Susan Love’s Army of Women in which women–with and without breast cancer–of all ages and ethnicities can participate in a variety of studies & surveys.

And this concludes our lesson on if not Komen, then who? Class dismissed.

Susan, science, and stagnation

Posted: June 14, 2012 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , | 27 Comments

I’m not sure “stagnation” is an actual word, but I like the alliteration so it stays. It’s my blog, after all, and I can make up words if I want to (but I’m still not comfortable ending a sentence with a preposition, hence the parenthetical aside).

Ok, with that out of the way…on to the news.

Susan Love announced that she’s been diagnosed with leukemia.

My immediate response to this news: Dammit.

Dr Susan Love is someone I respect and admire, and she’s done more for the breast cancer cause than a room full of Komens, IMHO. Her book, Dr Susan Love’s Breast Book, is considered the bible for those with breast cancer. Her focus is on research, not ribbons. The mission statement for her organization is this: “The Dr. Susan Love Research Foundation works to eradicate breast cancer and improve the quality of women’s health through innovative research, education, and advocacy.” She mobilized the Army of Women to get women of all ages, races, and stages involved in research. I’ve participated in several AOW studies, from simple online surveys to blood tests, and believe wholeheartedly in what she’s doing. Love says, “The key to ending breast cancer is to learn how to stop it before it starts.” YES! She also says,

“I have spent my whole life working in the field of breast cancer. At this point I am frustrated that we are still doing the same treatments with about the same results as when I started thirty years ago. Now that we can get to where breast cancer starts we have the opportunity to eradicate it. I am excited and impatient. The road is clear. We can go slowly or quickly, but everyday that we delay another 592 women will be diagnosed and 110 will die. The cost is too high to hesitate. This is our job not our daughters’, granddaughters’, nieces’ or nephews’. We can do it and we have to do it!”

When Love announced her diagnosis yesterday, she was resolute in facing the bad news, saying “As many of you know, I have never shrunk from a challenge.  I plan to bring my indomitable drive and energy to overcoming this and will be back to work as soon as possible.”  Go get ’em, Susan!

Next, the science news. A 45-year-old Bay Area man has been cured of HIV and the cause of his cure is a bone marrow stem cell transplant. My friend Katie at Uneasy Pink sums up the science of this breakthrough much better than I; check it out. Long story short is that the guy, who tested positive for HIV in 1995, also battled leukemia and underwent a bone marrow stem cell transplant in  Berlin in 2007. The donor was immune to HIV, and as those cells were transplanted, so was the immunity.

Famed AIDS researcher Dr. Jay Levy, who co-discovered the HIV virus, said this case opens the door to the field of “cure research,” which is now gaining more attention. “If you’re able to take the white cells from someone and manipulate them so they’re no longer infected, or infectable, no longer infectable by HIV, and those white cells become the whole immune system of that individual, you’ve got essentially a functional cure.”

I am all kinds of fired up about this incredible news.

There is great potential, and the idea of cure research is exciting. I would love to see if spill over into breast cancer. As Katie puts it, “I understand that HIV/AIDS and cancer are very different diseases.  But look at the progress that has been made over several decades.  In 1983, the idea that we would be deciding whether someone was cured or not of AIDS, that we would be debating how few cells mean cure, was unthinkable.  Back then, virtually everyone who contracted AIDS died of it, and in about 9 months from diagnosis.  Now the average survival time after diagnosis is 24 years.”

Survival time of 24 years. Remember when AIDS first hit the scene in the early 1980s, and a diagnosis was the same as a death sentence? Now, 30 years later, AIDS experts are talking about cure research? Amazing.

Why isn’t this kind of thinking being applied to breast cancer research?

I’m guessing the reasons are many, but can’t help but think that one reason is because we’ve made breast cancer so pretty. It’s one of the most heavily funded cancers in terms of research, yet as Dr Love points out, treatments and results are the same now as they were 30 years ago. I know, I know — cancer is incredibly complex and varied, not just in terms of the different types (breast, colon, etc) but within each type, there are immense differences. Then there are the differences in each person who’s diagnosed, as well as the differences in each cell. I don’t expect a panacea, but I do expect cure research.

It’s funny — not ha ha funny but peculiar — that in trying to de-stigmatize breast cancer, we’ve ended up trivializing it. The glamor disease is marketed as rosy, fun, and celebratory, when in fact, it’s deadly. And in the cases in which it doesn’t kill its victims, it nonetheless maims them and messes them up in untold ways. Even the “lucky ones” who “caught it early” and “enjoyed the best possible outcome” are scarred, physically and emotionally.

I saw this ad in a magazine recently, and had to rip it out and put it on my desk so that I’d remember to blog about it. This is what I’m talking about, people. 

Do we really need ads like this?

What does this accomplish, exactly? As a woman, this makes me mad. As a woman diagnosed with breast cancer, it infuriates me. And as a woman who has undergone reconstruction and is facing the hard truth that no amount of surgery will ever restore what I once had, it makes me want to strangle someone with my bare hands. Maybe I’ll start with those models then move on to the jackass behind the ad campaign.

If you zoom in on this dumb ad, it’s not entirely clear what’s going on here besides lots of skin, perky breasts, and a hand. This is what passes for breast cancer “awareness?”

Did the ad execs behind this think the hint of lesbianism would sell? Did they consider that the woman of color in the middle would be completely shafted should she be diagnosed, because black women die from breast cancer far more often than white women?

Then there’s the text of the ad: Connect, communicate, and conquer? Could this be any more vague and vapid? What the hell are they even selling? I had to look closely and read the fine print to see who put this ad out there. It’s on the very bottom of the ad — the Breast Cancer Awareness Campaign, which is run by Estee Lauder. Again, what the hell are they selling? Remove the pink-ribbon bracelet and this could easily be an ad for a plastic surgeon hawking breast augmentation.

I’ve had it with this side of the “awareness” campaign. Can anyone tell me what this kind of marketing does to actually  help our cause? I know the research dollars have to come from somewhere, but surely we don’t need naked breasts to plead our case.

A quick google search turned up plenty of these kinds of ads.

These last two are my favorite. The boxing girl, who I’ve written about before, because the idea of being a fighter when it comes to breast cancer is so pervasive, and the flip side to that idea being the ones who die from this wretched disease somehow didn’t fight quite hard enough and “lost the battle.” The “Expose the Truth” ad, from the Breast Cancer Research Foundation, because the “truth” has nothing at all to do with the model they chose to represent their message. The truth is, ads like these perpetuate the idea that breast cancer is a sexy, pretty disease.

Why can’t we have more ads like this?

Or this?

Or this?

Or this?

We sure don’t ever see ads like this, do we?