Cancer, Viruses & Informed Consent

A commentary about cancer screenings and surrounding questions posted yesterday brought a thoughtful reader response: “Science, including public health,” wrote davidlosangeles, “is an evolving process.”  Unquestionably so.

What we the consuming public need to understand is not the science as much as the personal responsibility. Today’s New York Times features another story on the front page of the Business section (some of us still follow old-fashioned newsprint) by Duff Wilson about “Research Uproar at a Cancer Clinic”, namely the highly regarded Carle Foundation Cancer Center in Urbana, IL. It’s another instance of respected professionals questioning each others’ respectability — or protocols, or carefulness, to use gentler terms than are actually being used. One of the issues raised is that of informed consent, and here is where we the consuming public come in. Whether we are cancer patients, CFIDS sufferers or mostly healthy people susceptible to the usual ails, it is incumbent upon the individual to know what he or she is agreeing to, and to know as much as possible about the projected outcome. We’re all in a giant clinical trial here on the planet. Nobody really knows about the outcome, but participation in mini-trials along the way can be valuable and is certainly laudable. Just know what you’re doing.

I am a continuing participant in the Women’s Health Initiative study now well into its second decade, though the primary issues are over and done with. I didn’t try any new hormone replacement therapies or drastic lifestyle changes, mainly because I’m pretty wimpish, but I read every word of the small print in the reams of documents that came along and tried hard to appreciate what the pitfalls and premises were. It was a valuable study, and hopefully will continue to turn up usable data.

Other studies are underway, and more will undoubtedly begin, regarding the current hoopla over XRMV, and H1N1. And heaven only knows how many other viruses, techonological advances, genetic possibilities and scientific wonders are out there to create great harm or great benefit.

Since the benefits are to the buyers, it’s appropriate that the buyer beware.

Cancer Gurus, CDC – Whom can you trust?

In the news of the past several days are reports that the American Cancer Society is about to concede that screenings for breast and prostate cancer — long touted as the holy grail of preventive medicine — have instead led to a great deal of over-treatment, and worse. Plus admission by the Centers for Disease Control and Prevention that their pooh-poohing of Chronic Fatigue Syndrome has left a lot of folks suffering, perhpas needlessly, for decades.

Who in the world is there left to trust?

I do trust my physicians at Kaiser, and continue to hope the crafters of our elusive health reform bills are looking in Kaiser’s direction. My breast cancer was detected through a regular mammogram. How frequent these screenings should be is still a matter of debate, but in my case early detection led to a quick mastectomy, a small price to pay for living happily a few more years after. (The ever-after business is not a principal to which I subscribe.) On the other hand, small as my tumor was, who’s to say it might have sat there harmlessly a few more years untreated? Please don’t get me wrong; I would not have opted for waiting to see. Just wondering.

I’m not so sure about prostate cancer screening. But since what seems nearly every man I know over 65 has been diagnosed with prostate cancer after a routine screening, it’s possible to wonder about this too. An October 21 New York Times article cites a new analysis by Dr. Laura Esserman, a professor of surgery and radiology at the University of California, San Francisco and director of the Carol Frank Buck Breast Cancer Center and Dr. Ian Thompson, professor and chairman of the department of urology at the University of Texas Health Science Center, San Antonio that “runs counter to everything people have been told about cancer: They are finding cancers that do not need to be found because they would never spread and kill or even be noticed if left alone.” We the healthcare consumers aren’t getting any breaks. Here’s a whole new dilemma to mull over and decide upon: to screen or not to screen, to treat or not to treat. In one group of gentlemen friends I know, others newly diagnosed with prostate cancer are invited to hang out for an hour or so and listen to the pros and cons of the various treatment options — because within the group are men who have gone down at least 4 or 5 different paths.

Another re-evaluation, this one a little more sinister, centers around the dismissive attitude long held by the venerable Centers for Disease Control and Prevention, guardian of our national health and welfare where things like viruses and other causes of infectious disease are concerned. In a Times op ed piece titled ‘A Case of Chronic Denial‘, Hillary Johnson reports on a recent study in the journal Science about a virus found in prostate cancers which will be referred to here by its shorter name, XRMV. It now turns out that there may be a link between XRMV and Chronic Fatigue Syndrome, more commonly referred to these days as CFIDS, and the work now going on in this area of research could be significant in treatment of the latter. Having had a number of friends and family members suffering from CFIDS, I admit to being among those who occasionally thought it might be partly in one’s head, but also aware of the degree of misery and disability CFIDS can bring.

This space is not a health authority. It is, rather aimed at those of us 50-somethings and over, many of whom have trusted many of the above. Trust is good. Open-mindedness is better. Questioning might be best of all.

Drugs, Perils and Trust

Oh great. Now I’ve got to worry about lung cancer.

Recently released findings on hormone replacement therapy now show it nearly doubles the risk of dying of lung cancer for those women who followed this regimen. Already we’ve learned that HRT is linked to increases in breast cancer, heart disease, stroke and who knows what else. It’s giving me a headache.

Hormone replacement therapy was, some 30 or more years ago, generally accepted as being the be-all and end-all for postmenopausal women. No hot flashes! Limitless energy! Avoid cancer! Resist heart disease! Live long and prosper! That was more or less the message. My good physician, now long dead of drug-related causes himself but a wise and decent man he was, enlisted the aid of his nurse, who was also a friend of mine, to convince me to begin HRT. Addictable to anything that comes down the pike and resistant to drug-taking in general, I protested. But they and the general public belief that these drugs (estrogen and progestin) were the answer to every woman’s prayers, convinced me. I took them daily for years, then once weekly, when the formulae were perfected.

I quit in 2006 for the best of reasons: breast cancer.

I am absolutely certain my doctor wanted only the best for me. But I’m still somehow a little comforted now by the knowledge that Kaiser does not let drug company representatives meet with its physicians. Most of us trust our doctors. Some people whom they trusted convinced a lot of doctors, 30+ years ago, that HRT was a wonderfully promising regimen. Oh, doctors also read reports and journal articles, and listened to presentations, and early studies did indicate that HRT was a wonderful thing. I presume even the drug makers sincerely felt — hoped, at least — they were doing good. They had wives and mothers, after all. (Most people in those workplaces at the time were male, I suspect.) But maybe, just maybe, a few more studies would have been in order.

Now we’ve got studies. And a lot of interesting new information thanks to the Women’s Health Initiative. It was the first ever major effort to look at the most common causes of death, disability and poor quality of life in postmenopausal women. WHI was launched in 1991 and covered 161,808 generally healthy women; without yours truly they’d have only had 161,807. In the effort to help the WHI folks collect data on cardiovascular disease, cancer and osteoporosis, we made regular visits to designated clinics for 5 years, giving blood, getting weighed, filling out forms, answering questions. For another 10 years we filled out annual reports (and I think some participants did more; I was purely a control-group person because I didn’t want to alter my HRT regimen and knew I hadn’t enough will power to stick to some rigorous, data-producing diet.) A lot of us died along the way, thus the data. I remain a participant in a follow-up study that runs until 2010.

I await with interest the next release of findings. Some of the questions are along the lines of ‘On a scale of 1 to 10, how happy are you?’ so somebody’s watching for quality of life connections to things like exercise and marital status. And drugs. I know there are great things being done with drugs, but this profit margin business combined with what we keep finding out does give me pause. (I loved the survey question that asked whether, when I entered a room, I thought people were talking about me. There’s a story here.)

But whatever they’re finding out, it’s carefully done, covers a long period and a relatively huge bunch of women, and bless their hearts. Meanwhile, if you’re on HRT, you might want to talk to your doctor. What we didn’t know proved it could hurt us.

Some Women's Views of Health Reform

First Lady Michelle Obama is making the news in support of her husband’s health plan, hoping to tap into the energies of one group who voted for Obama in large numbers: women. Reform is everyone’s concern, but in many ways it occupies a specific gender niche. As reported by Voice of America’s Kent Klein,

Mrs. Obama says health care reform is a women’s issue. “Women play a unique and increasingly significant role in our families.  We know the pain, because we are usually the ones dealing with it,” she said. The first lady spoke Friday to a gathering of women near the White House, and said the state of the U.S. health care system is unacceptable. “For two years on the campaign trail, this was what I heard from women:  That they were being crushed, crushed by the current structure of our health care.  Crushed,” she said.

A host of women’s groups, blogs, newsletters and web writers have also recently joined in. Posting in the National Women’s Law Center blog, Outreach Manager Thao Nguyen told the poignant story of hearing from a friend that she’d just married her long-time hesitant boyfriend. The marriage news was good news, but its terms took the joy out: having lost her job, it was the only way she could get health insurance.

Her point seemed so logical, but the entire idea was couched in such an insane reality I was simply speechless. Lucy is in her early 30s but she has a pre-existing condition so buying individual health insurance and the unfair, overpriced premiums that come with it was out of the question. Lucy has been living with Dan for 10 years, but unfortunately, he works for a company that doesn’t offer domestic partner benefits.

I couldn’t help but think: is this what our broken, unstable health care system means for millions of Americans around the country? As the economy continues to struggle, employers continue to shed jobs, and every day 14,000 more Americans wake up realizing that they are now uninsured and just one illness away from financial ruin. Are reluctant bachelors around the country going to put away their Megan Fox posters, cancel the “poker nights” (aka X-Box marathons we’re on to you), and start settling down?

My own run-in with healthcare weirdness is minor in comparison to most, but I still remember the shock. Making a routine call to renew the prescription for a bone-building drug I had taken for years to stave off osteoporosis, the message center person said she probably should warn me that rather than the $24 co-pay I’d been having per quarter my cost would now be $230. I do need these bones, but couldn’t see them worth $920 a year. I hung up and started drinking more milk. Had to get breast cancer, for which I now take a covered post- cancer drug which my oncologist prescribes… mainly to keep my bones healthy. Something is bizarre here.

Or maybe we women might bend the old macho adage a little: It’s broke, fix it.

VOA News – Michelle Obama Joins Health Reform Campaign.