Breast Cancer? Ask questions!

In honor of International Women’s Day (even if I didn’t quite get it finished in time,) this brief message is about a book recently re-issued by Dr. William H. Goodson III that should be in the hands of every woman with breast cancer, wanting to understand breast cancer or helping someone who is going through breast cancer.

Pink flower

It’s Your Body . . . ASK is a guidebook for talking with your doctor about breast cancer. I would’ve given anything to have had it when I had breast cancer, and a mastectomy, a dozen years ago. Maybe I would’ve made different decisions, maybe not. But the reality is this: most women, unless they have had medical training, would never think to ask a question like “What are the side effects of removing axillary nodes?” Personally, I didn’t think to ask about nodes at all. Other than considering the size of my cancer, in fact, questions I might have asked about its rate of growth, alternative treatments, follow-up therapies – – were mostly not discussed because I didn’t know to ask them.

This is a book that gives not just answers (it offers many answers about families, about hormone-based therapies and other issues) but more importantly: questions. If you, a breast cancer patient, know the questions, your doctor needs to give you the answers. What’s that lump about? What about these other pains and symptoms I have? What are all of my treatment options?

(I would say, here, Full disclosure: Dr, Goodson is a friend of mine. But it would be more braggadocio than disclosure. Bill Goodson and I shared a few discussion program podiums It's Your Bodyseveral years ago when his gripping novel about sexual violence against women, The Blue-Eyed Girl and my Perilous Times: An inside look at abortion before – and after – Roe v Wade were both newly released. I’m a writer. He’s a Senior Scientist at California Pacific Medical Center Research Institute; a recognized leader in breast cancer care who has been (among other things) a Professor of Surgery at the University of California San Francisco and President of the San Francisco Medical Society, and is listed in The Best Doctors in America.)

Credentials aside, It’s Your Body . . . ASK is worth a look. It offers a pathway through turbulent times, which can be far less turbulent if you have some help in steering your own ship.

Check it out.

Data Today, Better Tomorrow, yay!

Women's Health Initiative

Some of us are suckers for studies: clinical trials, focus groups, surveys – whatever promises to shed a little light on the human condition, or possibly make that condition a little better.

This writer is a hopeless volunteer.

I have had my knees examined by MRIs, perhaps studying why I still have the originals despite a long history of abuse. I have had blood drawn for a study of celiac disease by someone who came to the house as part of the deal but unfortunately was not trained to find veins without causing excruciating pain. I have filled out lengthy surveys about addictive behavior – which may include addiction to study-participation (though that was not among the category choices.)

Currently, I am proudest of being an original part of the Women’s Health Initiative, which launched in 1993 with more than 160,000 postmenopausal women including this writer. In 1993 this was a Very Big Deal: studies had been made for all sorts of things with all sorts of participants, but finally there was a study of WOMEN. It sought to discover links between cancer (imagine! Studying women and cancer!) medical protocols, diet and other factors. Being a congenital wimp, and knowing I wouldn’t change my diet or stick to other proscribed regimens, I just signed up for the control group… but still. Even we control groupies are useful.

Over the years, WHI has developed a huge amount of useful data, probably the most beneficial being the finding that (imagine! Studying women!) hormone replacement therapy was not the be-all and end-all we had originally thought, but actually not such a good idea. (Read all about it.)

WHI has published over a thousand articles, approved well over 300 ancillary studies, and twice conducted extension studies. Findings have been about links between age, daily activities, diet etc and things like body fat, omega oils, heart disease, endometrial cancer – there is a list of useful discoveries resulting from this one large and ever-growing study project that boggles the mind.

Some – though surely not all – of this data is collected through regular survey forms received every year by WHI participants in addition to the annual birthday cards that by now this writer accepts as a “Congratulations! Are you’re still alive?” greeting. They seek data about lifestyles and life changes along with the traditional general health issues – and sometimes make one wonder what the next findings may be. My personal favorite question was, “When you enter a room full of people, do you often imagine they are talking about you?”

Paranoia after mastectomy? Who knows.

It is fascinating to be on the questioning end of tomorrow’s answers. Next blog: The Brain Health Registry. Assuming my closely-watched brain is still functioning.

WHI: Strengthening Women’s Health

WHICould the health and wellbeing of a few million women be improved, and a few billion dollars saved in the process? A very big dream.

When the Women’s Health Initiative was established more than 20 years ago, no one was talking in grandiose terms and few would have anticipated the wide-ranging health benefits (and huge cost savings) that would result in the decades ahead. Many of us were simply saying, “Imagine this. At last we’re studying women to find answers about women’s health issues.”

This writer was proud and happy to enlist in the first WHI study. I joined more than 100,000 other postmenopausal women volunteering to fill out forms, have blood drawn and answer questions over the next 15 years. That initial focus was on tracking the effects of hormone therapy, dietary patterns and/or calcium/vitamin D supplements on prevention of heart disease, cancer and osteoporotic fractures. I had not yet had breast cancer – that would come about 10 years into the study; a family history of osteoporosis added to my personal interest in WHI. Over the years I volunteered to participate in some of the wide-ranging ancillary studies looking at other health-related things like physical activities, lifestyle, tobacco and dozens of peripheral issues. (My personal favorite question appeared on one of the multi-page annual update forms. It read – Yes or No – “When you enter a room full of other people, do you have the feeling they are talking about you?” There may someday be a report on women and paranoia.)

Mysterious questions aside, WHI is serious business. Here, excerpted from the latest Extension Study newsletter are a few facts about what has been learned from the historic initiative, and a little of what is still ahead.

Those hormones millions of postmenopausal women were taking, widely thought to be miracle answers? Studies showed the risks far outweighed the benefits, and millions stopped taking them. Hormones in different combinations had been commonly taken to minimize chances of cardiovascular disease, cancers, fractures, diabetes, gall bladder disease and a variety of quality-of-life measures; quitting the hormones proved a better choice. Health benefits can’t be precisely measured, but the reduction in hormone use has led to a decrease in rates of breast cancer and cardiovascular disease.

And in dollars and cents? Some $37.1 billion, (in 2012 when all costs and quality-adjusted years of life are considered, has been the total economic return of the WHI trial.

By June, 2014, over 1000 papers based on WHI data had been published in scientific journals. What’s ahead? Researchers are looking at pet ownership and risk of cardiovascular disease; physical activity during childhood and risk of Alzheimer’s disease; breast cancer distribution by rural/urban areas and geographic differences in cognitive decline/dementia.

Every year on their birthday, WHI study participants receive a card – some of us call it the “Hooray, you’re still alive” card. For women everywhere, it represents something worth more than gold.

Early cancer tests, surgeries questioned

Was this mastectomy necessary? It’s a question few breast cancer survivors want to ask, and one that few are likely to answer absolutely. But after years of aggressive emphasis on early diagnosis and treatment, some previous imperatives are being called into question. Noting that breast biopsy has long been considered the “gold standard,” a report in today’s New York Times addresses the new rethinking:

As it turns out, diagnosing the earliest stage of breast cancer can be surprisingly difficult, prone to both outright error and case-by-case disagreement over whether a cluster of cells is benign or malignant, according to an examination of breast cancer cases by The New York Times.

Advances in mammography and other imaging technology over the past 30 years have meant that pathologists must render opinions on ever smaller breast lesions, some the size of a few grains of salt. Discerning the difference between some benign lesions and early stage breast cancer is a particularly challenging area of pathology, according to medical records and interviews with doctors and patients.

Diagnosing D.C.I.S. “is a 30-year history of confusion, differences of opinion and under- and overtreatment,” said Dr. Shahla Masood, the head of pathology at the University of Florida College of Medicine in Jacksonville. “There are studies that show that diagnosing these borderline breast lesions occasionally comes down to the flip of a coin.”

Much of the current finger-pointing is toward pathologists, where their money comes from, whether they are ‘certified’ or not and in general, how good a job they do.

In 2006, Susan G. Komen for the Cure, an influential breast cancer survivors’ organization, released a startling study. It estimated that in 90,000 cases, women who receive a diagnosis of D.C.I.S. or invasive breast cancer either did not have the disease or their pathologist made another error that resulted in incorrect treatment.

After the Komen report, the College of American Pathologists announced several steps to improve breast cancer diagnosis, including the certification program for pathologists.

For the medical community, the Komen findings were not surprising, since the risk of misdiagnosis had been widely written about in medical literature. One study in 2002, by doctors at Northwestern University Medical Center, reviewed the pathology in 340 breast cancer cases and found that 7.8 percent of them had errors serious enough to change plans for surgery.

This space has argued occasionally for reconsideration of yearly mammograms and for longer, stronger consideration of other options before a mastectomy is performed. Especially in the case of older women.

Would I insist on further studies or opt for less radical treatment if I were diagnosed with breast cancer today? Probably. Can I undo the mastectomy I had at 72? Not exactly. Second-guessing is beside the point for someone who is healthy and fit, but asking questions won’t ever hurt.

Earliest Steps to Find Breast Cancer Are Prone to Error – NYTimes.com.

Health Bill Should not Pit Women against Seniors

The health care issue is, one would think, too important for partisan games pitting one group against another. Especially when huge portions of each group are one and the same. But as Robert Pear and David M. Herszenhorn report in today’s New York Times, that seems to be happening.

In a day of desultory debate on sweeping health care legislation, senators appealed to two potent political constituencies on Tuesday, with Democrats seeking additional medical benefits for women and Republicans vowing to preserve and protect Medicare for older Americans.

The Democrats’ first amendment, offered by Senator Barbara A. Mikulski of Maryland, would require insurers to cover more screenings and preventive care for women, with no co-payments.

‘Women often forgo those critical preventive screenings because they simply cannot afford it, or their insurance company won’t pay for it unless it is mandated by state law,’ Ms. Mikulski said.

I met with my oncologist two days ago and decided to have a mammogram. It’s been two years since the last one. She and I agree that, having had breast cancer in 2006 and breezed through a mastectomy, and being fit and healthy overall, my particular situation suggests the potential benefits — catch another cancer early, gain another good decade or so of life — outweigh the risks.  This is what the whole thing is about: every woman is different, every woman should be allowed to decide, with her doctor, on screening and preventive care. The Mikulski amendment will insure that can happen, whatever one’s age and circumstances.

The first Republican proposal, offered by Senator John McCain of Arizona, would strip the bill of more than $450 billion of proposed savings in Medicare. The savings would curb the growth of Medicare payments to hospitals, nursing homes, health maintenance organizations and other providers of care.

‘The cuts are not attainable,’ Mr. McCain said. ‘And if they were, it would mean a direct curtailment and reduction in the benefits we have promised to senior citizens.’

Senators said that debate on the bill, which embodies President Obama’s top domestic priority, would last for several weeks and perhaps continue into January. A vote on Ms. Mikulski’s amendment has not been scheduled but could come Wednesday.

The health care bill would require most Americans to carry insurance. It would subsidize coverage for people with moderate incomes, expand Medicaid and create a government insurance plan, which would compete with private insurers. The House passed a similar bill last month.

Ms. Mikulski’s proposal was prompted, in part, by the recent furor over new recommendations from a federal task force that breast cancer screenings begin later for many women.

The Senate majority leader, Harry Reid, Democrat of Nevada, hailed Ms. Mikulski’s proposal, saying: ‘The decision whether or when to get a mammogram should be left up to the patient and the doctor. That decision should not be made by some bureaucrat, a member of Congress or someone they’ve never met.’

As health costs and insurance premiums rise, Mr. Reid said, ‘more women are skipping screenings for cervical and breast cancer, and doctor visits that can catch problems like postpartum depression and domestic violence.’

Votes on the Mikulski amendment will show whether Republicans “truly want to improve this bill or just want to play games, stall,” Mr. Reid said.

Ms. Mikulski said her proposal would ‘shrink or eliminate the high cost of co-payments and deductibles’ for women who receive screenings for cancer, heart disease, diabetes and other conditions.

Senator Kay Bailey Hutchison, Republican of Texas, criticized the proposal, saying it would ‘allow yet another government agency to interfere in the relationship between a woman and her doctor.’

No, Senator Hutchison, the government isn’t interfering in my relationship with my doctor, nor will it do so by insuring other women’s choices and coverage.

Republicans argued that the bill would be paid for on the backs of older Americans.

‘We are receiving incredible and overwhelming response from seniors all over America,’ Mr. McCain said. ‘They paid all their working lives into the Medicare trust fund, and now they’re in danger of having $483 billion cut out of it.’

Mr. McCain’s proposal would effectively cripple the bill, because Democrats are relying on savings in Medicare to help offset the cost of providing coverage to more than 30 million people who are now uninsured.

This senior would like to add a word to that “overwhelming response” Mr. McCain reports. I paid all my working life into Medicare (which, by the way, was not exactly a gift to America from the Republican party) and I want a decent health bill more than I want every penny of my Medicare coverage protected.

A lot of us have come to terms with the fact that the health bill we may get is a long way from the health bill we so fervently wanted. We are still hoping that something survives the attempts to sink it at any cost.

Senators Pitch to Women and Elderly on Health Bill – NYTimes.com.

New Cancer Guidelines: One Good Message

News about changing guidelines for cervical and breast cancer screening have some women cheering, a lot of women fuming, and most women feeling confused. Or betrayed, or mistreated or worse.

There is one universal message in it all: every woman has to be her own advocate.

For most of us, that is no big deal. We’ve known for a long time that no two of us (and surely no four collections of breast tissue or no two histories of sexual activity) are alike, and most of us have gotten used to asking a lot of questions. It’s unfortunate that so many changes have been announced at almost the same time, and especially that the issue has become politicized.

New York Times health writer Denise Grady summed up the latest developments, and the issues that have caused confusion and anger in a November 20 article:

New guidelines for cervical cancer screening say women should delay their first Pap test until age 21, and be screened less often than recommended in the past.

The advice, from the American College of Obstetricians and Gynecologists, is meant to decrease unnecessary testing and potentially harmful treatment, particularly in teenagers and young women. The group’s previous guidelines had recommended yearly testing for young women, starting within three years of their first sexual intercourse, but no later than age 21.

Arriving on the heels of hotly disputed guidelines calling for less use of mammography, the new recommendations might seem like part of a larger plan to slash cancer screening for women. But the timing was coincidental, said Dr. Cheryl B. Iglesia, the chairwoman of a panel in the obstetricians’ group that developed the Pap smear guidelines. The group updates its advice regularly based on new medical information, and Dr. Iglesia said the latest recommendations had been in the works for several years, “long before the Obama health plan came into existence.”

She called the timing crazy, uncanny and “an unfortunate perfect storm,” adding, “There’s no political agenda with regard to these recommendations.”

Dr. Iglesia said the argument for changing Pap screening was more compelling than that for cutting back on mammography — which the obstetricians’ group has staunchly opposed — because there is more potential for harm from the overuse of Pap tests. The reason is that young women are especially prone to develop abnormalities in the cervix that appear to be precancerous, but that will go away if left alone. But when Pap tests find the growths, doctors often remove them, with procedures that can injure the cervix and lead to problems later when a woman becomes pregnant, including premature birth and an increased risk of needing a Caesarean.

Still, the new recommendations for Pap tests are likely to feed a political debate in Washington over health care overhaul proposals. The mammogram advice led some Republicans to predict that such recommendations would lead to rationing.

It boils down to this: every woman will need to pay close attention to her own health care. That is bad news for the less educated, the less aggressive, and those with less access to care, and not particularly good news for many older women who grew up with “The doctor knows best” excuse for not paying attention.But it’s good news for those of us, particularly older women, who have questioned what sometimes seemed too-frequent testing and screening.

Asking questions just got more respectable.

Guidelines Push Back Age for Cervical Cancer Tests – NYTimes.com.

Skip mammograms, quit breast self-exams, and maybe lighten up on 'defensive medicine' while we're at it

All those mammograms, self-exams and dutiful attention to catching breast cancer at the very first sign? Forget it. Might even do more harm than good.

As summarized by Associated Press writers Stephanie Nano and Marilynn Machione late Monday,
Most women don’t need a mammogram in their 40s and should get one every two years starting at 50, a government task forcesaid Monday. It’s a major reversal that conflicts with the American Cancer Society‘s long-standing position.

Also, the task force said breast self-exams do no good and women shouldn’t be taught to do them.

For most of the past two decades, the cancer society has been recommending annual mammograms beginning at 40.

But the government panel of doctors and scientists concluded that getting screened for breast cancer so early and so often leads to too many false alarms and unneeded biopsies without substantially improving women’s odds of survival.

“The benefits are less and the harms are greater when screening starts in the 40s,” said Dr. Diana Petitti, vice chair of the panel.

The new guidelines were issued by the U.S. Preventive Services Task Force, whose stance influences coverage of screening tests by Medicare and many insurance companies.

But Susan Pisano, a spokeswoman for America’s Health Insurance Plans, an industry group, said insurance coverage isn’t likely to change because of the new guidelines. No changes are planned in Medicare coverage either, said Dori Salcido, spokeswoman for the Health and Human Services department.

Maybe, just maybe, a clearer look at breast cancer screening could be accompanied by a good look at a little of the other possibly unnecessary and extraordinarily pricey “defensive medicine” going on around the country. What a fine way that would be to hold down costs and save a lot of time and angst. In another recent article (November 5) published in the San Francisco Chronicle, Associated Press reporter Steve LeBlanc wrote of how the costs of “defensive medicine,” along with malpractice insurance and lawsuit awards, are adding significantly to the soaring costs of health care.

LeBlanc illustrates the issue with a story that rings sadly true:

Dr. James Wang says he tries to tell his patients when medical procedures aren’t necessary. If they insist, though, he will do it – not so much to protect their health as his own practice.

After being sued for allegedly failing to diagnose a case of appendicitis, Wang says he turned to what’s known as “defensive medicine,” ordering extra tests, scans, consultations and even hospitalization to protect against malpractice suits.

“You are thinking about what can I do to prevent this from happening again,” he said, adding that he did nothing wrong but agreed to a minor settlement to avoid a trial.

We have, LeBlanc explains, doctors battling malpractice premiums and lawyers saying malpractice suits discourage bad medicine — meanwhile, the costs of it all add up to some ten percent of health care expenditures.

We the public, healthy and sickly alike, are caught in the middle. Could we not somehow declare a truce? We’ll quit rushing to sue, lawyers back off from chasing ambulances, doctors go about the business of practicing medicine according to patient need rather than fear of consequences. Seems like a good idea to me, but I’m not holding my breath.

I’m also not having any more mammograms any time soon.

New advice: Skip mammograms in 40s, start at 50 – Yahoo! News.