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Health care

Does Breast Surgery for DCIS Save Lives?

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In a word: probably.

Yesterday, NPR ran a talk-show piece that went online with a “scare” headline: “Surgery Doesn’t Help Women with Early-Stage Breast Carcinoma.” In fact, the report doesn’t say you’re going to die if you have early stage breast cancer. In fact, it discusses DCIS, which is not known to be cancer at all.

And yes, for some women, surgery makes no difference in survival rates because some cases of DCIS, which has been described as a “pre-cancer,” never progress to an invasive stage.

However, an unknown percentage of DCIS incidences do convert to invasive cancer. We do not know what that percentage is, because a true randomized study (in which X number of women are randomly assigned to have no treatment and an equivalent number get surgery) would be wildly unethical. Knowing that a substantial risk is there — possibly in the vicinity of 80% — doctors are morally obliged to recommend surgical treatment.

The story reports that survival rates are noticeably improved among women who have intermediate and high-grade DCIS:

For the women who had cells that were closer on the continuum to invasive cancer — those with intermediate- or high-grade DCIS — surgery did provide a significant benefit. After 10 years, 98.6 percent of women with intermediate-grade DCIS and who had surgery had survived breast cancer, compared to 94.6 percent of women who didn’t have surgery. And with high-grade DCIS, 98.4 percent of those who had surgery survived, compared to 90.5 percent of those who didn’t.

My DCIS did contain intermediate and high-grade areas; fortunately, there was no necrosis, which is a marker that the DCIS is about to convert to invasive cancer. So it looks like I have a 98.4% chance of living another ten years.

The problem with these survival rates is that they don’t always distinguish between women who died of breast cancer and women who died of just anything.  Some studies take the cause of death into account, and some vacuum up all mortality data. So one can find oneself with a basketful of apples and oranges and no way of knowing which is which.

Survival rates for early-stage breast cancers — I mean the real thing, not DCIS — are quite high. They’re not nearly 100%, but they’re well over 80%. Survival rates for DCIS that has been treated with lumpectomy + radiation + hormone blockers or with simple mastectomy approach 100% when causes other than metastasizing breast cancer are taken out of the equation.

To my mind, a serious problem is the  widespread insistence on lumpectomy, which is not “just as effective” as mastectomy. Radiation treatment, tamoxifen, and AI’s are not minor things. Radiation causes some very unpleasant side effects, some of them long-term, and if the idea is to preserve a semblance of your natural breast, it’s a major FAIL. Radiation causes your scar to contract, so that you can end up significantly disfigured. Tamoxifen can cause uterine cancer and blood clots (leading to stroke and deep-vein thrombosis), and both tamoxifen and aromatase inhibitors can cause painful arthralgia. Only about 40% of women stay on AI’s for the entire five years that’s recommended, and the quit rate for tamoxifen is also pretty high.

As many as 50% of DCIS incidences never convert to invasive cancer. Hence it’s reasonable to argue that removing every one of them and performing mastectomies to get rid of it is overtreatment.

But I think that assertion may be debatable. If non-conversion rates really ARE as high as 50% (we do not know and have no ethical way to find out), then it means the rate of conversion TO invasive cancer is at least 50%; it may be significantly higher, possibly as much as 80%. Would you rather go through life boobless or would you prefer to run to the hospital every year for yet another mammogram (mammography also has side effects), possibly yet another biopsy, and worry constantly about what’s growing in your chest?

Fighting Breast Cancer: Put Your Money Where It Matters Most

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The Susan G. Komen organization is surprisingly controversial – what’s to argue about raising consciousness of breast cancer and funding research? But interestingly, there are quite a few points of view about the group.

Some of the controversy is political. This fact came to the fore when a flap arose after Komen decided to de-fund Planned Parenthood, which was getting grants to provide breast cancer screening and consulting. In the ensuing uproar, Komen backed down.

However, questions about the group’s approach, methods, and success were on the float years before Komen’s leadership identified itself with the pro-life camp.

Probably the Komen’s most visible critics are Gayle Sulik and Barbara Ehrenreich. Sulik is a Ph.D. psychologist and sociologist, author of Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health, who writes regularly for Psychology Today, among others. And we all know who Barbara Ehrenreich is: Nickeled and Dimed, Bright-Sided, Fear of Falling, and many, many others.

As the controversy swirls, you hear some ridiculous things about the Komen group. For example, you’ve probably heard that less than 20% of its donated revenues go to breast cancer research – which happens, as a matter of fact, to be where funding needs to go. And who hasn’t received the chain email claiming the group’s CEO and founder, Nancy Brinker, cuts herself a check in the amount of $684,000 by way of annual salary?

These and similar claims are not altogether straightforward. For example, it may be true that in recent years breast cancer research has received only about 20% of Komen’s program expenses; however, most of its program expenses go to funding public education, providing screening and diagnostic procedures, and helping breast cancer victims to arrange treatment and home care. All of these are well within the group’s stated mission.

As for the apparently excessive salaries: in 2013, according Charity Navigator, Brinker’s salary was $560,896. The group’s president, Elizabeth Thompson, was paid $606,461 that year. While that may sound excessive to us peons, each executive’s pay amounted to 2/10 of a percent of total 2013 revenues.

However, critics do have some legitimate complaints beyond grousing about the the tyranny of false cheeriness, the pink sentimentality, and the infantalization of women. Sulik points out that Komen has become a self-perpetuating entity unto itself, highly profitable to its corporate sponsors, which benefit from soaring rates of questionably necessary testing, overtreatment, and unnecessary surgery.

Several aspects of what Sulik calls the “pink ribbon culture” get in the way of real progress:

• Scientific controversies that could sharpen medical practice and enhance research are evaded or dumbed-down for the public. This especially is true of questions about the survival benefits of mammography, the disease’s complex and diverse causes, and the fact that we have exactly zero sure ways to prevent or treat breast cancer.

• The profit motive casts a murky shadow over the group’s activities. Komen exists within a multi-BILLION dollar cancer industry that has many profit centers: pharmaceuticals, technology manufacturers, the medical industry, large breast cancer organizations, and sponsoring corporations.

• The “warrior” image and the cheery millions milling about for a cure do not reflect the reality of the breast cancer victims who don’t fit the Pink Ribbon image.

It must be said, obviously, that the group has accomplished some very positive things:

• Its vibrant publicity campaigns have raised a lot of money for research and for support of breast cancer patients.

• Millions of people worldwide have been motivated to take action.

Yet Komen is also haunted by a number of negatives:

• It marginalizes the stories of women who don’t fit the approved profile: stories that betray their tellers’ realism, cynicism, ongoing struggle, or death.

• It plays on clichés about how women should look, feel, and behave.

• It celebrates women’s breasts as the avatar of what it means to be a woman, a mother, and a sex partner.

• It engages an absurd “warrior” metaphor that has little real relevance to the cancer patient’s reality.

• It promotes cheerfulness and optimism where they do not apply.

• Its activities and partnerships redound to the profit of a wide variety of corporate interests.

• It overstates the benefits of screening. Over any ten-year period, for every 2000 women screened, ten will be subjected to unnecessary treatment and just one will have her life prolonged.

In fact, widespread screening did cause death rates to drop briefly for white women in the late 90s, but no change occurred for African American women. In the present century, there has been no change in the death rate from breast cancer, despite soaring numbers of biopsies, lumpectomies, and mastectomies. Breast cancer remains the second leading cause of death for women, after lung cancer.

What’s needed is not marches, not teddy bears, not even regular screening of every female on the planet. What’s needed is real, evidence-based research.

As we know, some of our honored elected leaders are working hard to cut back on much of that research. Congress is attempting to cut funding to the National Science Foundation, and we can see more of that kind of thing coming down the pike.

Whatever you think of Komen’s politics or of its “pink” theme, the fact remains it spends a large portion of your charitable dollar on endeavors other than research. While these services are worthy, many organizations all over the country provide the same services, and some do it better than Komen does.

So it’s worth knowing that you can donate directly to institutions that conduct basic and applied research on breast cancer. If you have X number of dollars that you’d like to direct to the cause of eradicating breast cancer, you might consider bypassing the middle-persons and sending your money straight to the researchers themselves.

Here’s a list of some of the best known cancer research institutions in the country. If you go to their websites, you can find ways to donate or to inquire about donating.

• Canadian Breast Cancer Foundation

• Cancer Prevention Institute of California

• Dr. Susan Love Foundation

• Duke Cancer Institute

• Johns Hopkins Kimmel Comprehensive Cancer Center

• M. D. Anderson Cancer Center

• Mayo Clinic Cancer Center: Research

• Moffitt Cancer Center

•  National Breast Cancer Foundation

• Stanford School of Medicine Cancer Institute

• The James: Ohio State University

• University of California Los Angeles Jonsson Cancer Center Foundation

• University of California San Diego Moores Cancer Center

• University of Michigan Health System Comprehensive Cancer Center

I can’t recommend what you should do, but it’s what I’m going to do.

Wanna Lose the Weight? Hold the Salt

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Wow! I’ve gained over two pounds in two days! And over the same period, the blood pressure shot up from 124/80 to 135/75.

And what might be the cause of this development? Salt.

Saturday at Whole Foods I picked up an impulse buy: “sea salt and olive oil sourdough crackers.” They’re pretty good — not great, but interesting — and very salty. Also grabbed some buffalo cheese stuff from the low-cost “experiment” basket at the deli counter. Pretty good, but salty.

Also at Whole Foods that day, I bought a package of (very nice!) sushi, which I consumed with copious amounts of tamari and a beer. Salty, salty, and salty.

That afternoon I went to  a friend’s party. Snacked on popcorn and chips and dip. Salty.

Sunday was the one day a month when the choir has to show up at the 8 a.m. service. This is a bit of a hassle since I don’t get moving very fast in the mornings anymore, especially when the back hurts a lot, which it certainly does after I tripped over the shop-vac cord and nearly hit the floor. In a hurry to get out of the house, I grabbed a handful of those oversalted crackers and a couple of pieces of cheese.

Bad idea.

Sunday noon I went to lunch with M’hijito at a gourmetified sort of Mexican-food place. Carne asade soft tacos, beans, rice. Restaurant food is by its nature oversalted; add “Mexican” to the mix and you get mega-oversalted. Add one of this outfit’s incredibly delicious Margaritas and you’re off the scale.

Salt always raises my weight. Conversely, though, not  eating salted foods (restaurant food, bread, sushi, beer, Mexican food, chips, dips, you name it) always drops the weight off. Fast. A great cheat on your diet is simply to stop adding salt to your food — and stay away from processed and restaurant foods, both of which are famously oversalted. Do this and your weight will magically drop within days.

Stick with that routine and your blood pressure will drop, too. Sometimes quite dramatically.

Didn’t eat much more food yesterday but did swallow a generic Flexiril, such was the incredible back pain. This stuff can make your blood pressure go either way: it can either depress b.p. or  elevate it.

Whether it was the salt, the drug, or both, I don’t know: all I know is my b.p. has jumped over 11 points(!!) and the weight is up over two pounds. And I hurt too much to exercise today, so that’s going to put the eefus on using a brisk jog around the block to push the figures down.

So the only thing I’m going to be able to do today is to refrain from eating salty food. That will cut the weight gain by about a pound over the course of a day. And I guess I’d better refrain from the Flexiril, too. Damn it.

Not-a-Cancer: Updated Update

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Isn’t it lovely: today I do not have to go to the Mayo!

Friday I drove out to the clinic on the far side of Scottsdale, having been summoned by the medical oncologist WonderSurgeon works with. When I asked them what the appointment was for, they told me it was “a six-month followup.” So I say, “Follow-up to WHAT? What’s this conversation going to be about?” You understand, it’s a fifty-mile round trip and I don’t want to spend two hours and a quarter-tank of gas to schlep out there for nothing. She refused to tell me. When I got the printed “itinerary” that the Mayo sends to announce upcoming appointments, I saw I wasn’t even supposed to see the doc — they had me set up to see a nurse practitioner.

So I fly up to the check-in desk just after the appointed hour, having gotten caught up in a gigantic traffic jam and also having discovered that the Morons were swarming — you never saw so many idiot drivers in your LIFE! The receptionist checks me in and then says oh! wait!

NOW what?

“Your appointment isn’t until Monday.”

“WHAT! Holy shit.”

So I say, “Is there somebody I could talk with who could tell me what it is they want to discuss with me? I don’t understand why I’m being hauled out here — and I don’t have either the time to spend on driving two hours back and forth or the money to waste on the gasoline. Could this conversation take place over the phone?” It takes me some doing to make this register with her, but finally she gets it and she tells me to go over to a house phone hanging on a wall across the room — yeah, one of those hard-wired things with the curly cord — and dial an extension into oncology.

This I do. Naturally, they stick me on hold until a nurse can talk to me. I sit on the floor, open my computer, and rack up 15 minutes of billable time reading a client’s manuscript while listening to loud, obnoxious Muzak.

Finally a nurse gets on the phone. I explain AGAIN that it’s an absurdly long drive, that I’m trying to run a business, and that I don’t have the time to come schlepping out unless there’s a very good reason for it. Would she please tell me why I’m being asked to traipse to the far side of East Scottsdale?

She looks in the records and, after much rumination, finally says, “This appointment was made last September. Uhmm…I see you’ve already had…ahem…several lumpectomies.”

Interesting way to describe a double mastectomy.

“Well, yeah. Actually, I don’t have anything left on my body to discuss.”

“You had no invasive cancer?”

“Nope.”

“Oh.”

Uh huh.

“Well, this was a routine follow-up. Since you’ve talked to Dr. WonderSurgeon, there’s no need for another appointment with us.”

No kidding.

So that was only slightly infuriating.

The trip wasn’t entirely wasted. I needed some specific items available most easily at a specific store located on the fringes of Richistan, so I was able to drop by there on the way home and pick up that junk, plus I made a quick visit to the Whole Foods across the street from the desired emporium.

But I could have billed three hours that morning, not the fifteen minutes I managed to crank out while sitting on the floor of the Mayo’s waiting room.

Why Didn’t Anybody Tell Me…

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…how amazingly better I was going to feel as a result of the de-boobification surgery?

This morning I turned out of the sack after laying there for seven hours without hardly moving — never a good strategy. The bones were a little stiff, which is normal for survivors of the Early Cretaceous. But…

Hang onto your hats, folks!

There was NO…BACK…PAIN!

Whaaa?

It’s been slowly getting a little better, but that often happens if I get sick and have to lay in bed for a couple of days. But the  pain has never been completely gone. As in GONE gone.

Amble into the kitchen. Pick up the dogs’ water bowl, dump the old water on the houseplants, refill the bowl, and set it back down on the floor. NO excruciating jolt of pain running down the back and into the hip!

Well, I figured, this is some kind of a fluke.

Ambled down the hall and sat in front of the computer for half an hour or forty minutes, a strategy guaranteed to cripple. Got up, braced for the usual hair-raising stab.

No. NOTHING.

Holy mackerel. It’s a God’s miracle.

Seriously, if anyone had ever told me I could trade off boobs for freedom from back pain, I’d have been at WonderSurgeon’s door years ago.

I expect removing the boobs’ dead weight probably relieves a fair amount of pressure on the aging vertebrae. Also, getting rid of weight that wants to pull you forward into a slump changes your balance and posture. It’s much easier and more comfortable for me to stand up straight without all that extra upper-body weight to counteract.

Surely do hope this lasts. If it persists even a week or two, I’ll be happy. Every day without back pain is a God’s gift.

 

wooHOO! FREE AT LAST!

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Okay, so today SDXB drives me out to the Mayo, way to heck & gone almost to the freaking county line to have the hated drains removed, two days earlier than planned, given that they’ve both been producing less than 30 cc of fluid for the past two or three days.

WonderSurgeon is NOT pleased to see me. She doesn’t understand why I couldn’t wait until Thursday, when this event was originally scheduled, and said she preferred to wait that long.

Huh? It was HER NURSE who said WS wanted to get the things out in no more than a week and that it was TIME to do it, given the numbers. Oh well.

I said, “You’re the boss! If you want to do it on Thursday, I’ll be happy to come out then.” (LIE. But her internal lie detector clearly registered that one.) So she hauled the little b*stards out. She said it would hurt but it did NOT. She did it very, very fast. If she’d done it slowly I might have whined, but when she pulled each tube out in about 2 seconds apiece, I hardly even noticed.

She said I might get seromas from yanking the things this soon. But then she said I could get seromas if I waited until Thursday — she said you just never know. Whatever. Apparently a seroma is pretty easy to fix: they drain it with a needle. Everything I’ve seen on the Web suggests it’s pain-free — just a nuisance having to make yet another trek to the doc’s office.

Yanking them out was almost pain-free. She said it would hurt and then pulled them out counting to 10 as fast as she could speak: onetwothreefourfivesixseveneightnineten! It was fine. It might have been painful if she’d done it slowly, but she worked so fast the brain didn’t have time to notice.

I asked if I could dispense with the Iron Maiden. She thought so; said it was possible using it a few more days might forestall seromas, but no data said one way or the other. She also says you can throw the horrid stinky foam pads into the wash machine (!!) and even run them through the dryer. So I’m thinking I’ll probably wash them and use them under the horrid compression bra at night.

She said some women like the Iron Maiden because…I guess it comforts them. I don’t know. Probably if you’re used to wearing a bra most of the time it would feel good. I abandoned bras in favor of camis with shelf bras a LONG time ago, and so I find binding garments exceptionally annoying. I took out the smelliferous foam pads at her office and put on just the compression bra alone. But when I got home, I threw that thing in the wash and put on a brand-new no-shelf-bra cami from Costco. It’s soft and silky. It looks fine and it feels fine.

LOL! So, now I’m one of the boys, and I have a Duelling Scar to make the best of them turn green with envy. Looked at my spectacular self in the mirror, and such is the power of Ego that I do not feel one little whit bad about the flat effect. IN FACT, in my humble opinion it looks a lot better than a pair of boobs competing to see which one can reach my bellybutton first. Honestly, I do not think I’m going to feel bad about this for a minute. Or if I do, I will remind myself: No More Mammograms!

Yeah. Life is good. I suppose. After all. More or less. As it were.