Boing Boing » breast cancer

Our Feel-Good War on Breast Cancer

Xeni Jardin — Thu, 25 Apr 2013 11:07:12 +0000

Peggy Orenstein has a hell of a piece in the New York Times magazine on "pink ribbon culture," and her frustration (which, as a woman with breast cancer, I fervently share) about how much progress has been made:

Scientific progress is erratic, unpredictable. “We are all foundering around in the dark,” said Peter B. Bach, director of the Center for Health Policy and Outcomes at Memorial Sloan-Kettering Cancer Center. “The one thing I can tell you is some of that foundering has borne fruit.” There are the few therapies, he said — like tamoxifen and Herceptin — that target specific tumor characteristics, and newer tests that estimate the chance of recurrence in estrogen-positive cancers, allowing lower-risk women to skip chemotherapy. “That’s not curing cancer,” Bach said, “but it’s progress. And yes, it’s slow.”
The idea that there could be one solution to breast cancer — screening, early detection, some universal cure — is certainly appealing. All of us — those who fear the disease, those who live with it, our friends and families, the corporations who swathe themselves in pink — wish it were true. Wearing a bracelet, sporting a ribbon, running a race or buying a pink blender expresses our hopes, and that feels good, even virtuous. But making a difference is more complicated than that.

Read: "Our Feel-Good War on Breast Cancer" [NYTimes.com]

Divinyls singer Chrissy Amphlett dies of breast cancer, MS

Xeni Jardin — Mon, 22 Apr 2013 13:46:53 +0000

The charismatic lead singer of Australian new wave band The Divinyls, Chrissy Amphlett, has died in her New York home of cancer and multiple sclerosis. She was 53. Above, "I Touch Myself," the autoerotic anthem of '80s teen females that became the Divinyls' greatest hit.

Last month, on her Facebook page, she wrote about the experience of being a breast cancer patient since 2010:

"Unfortunately the last 18 months have been a real challenge for me having breast cancer and MS and all the new places that will take you. You become sadly a patient in a world of waiting rooms, waiting sometimes hours for a result or an appointment. You spend a lot time in cold machines... hospital beds, on your knees praying for miracles, operating rooms, tests after tests, looking at healthy people skip down the street like you once did and you took it all for granted and now wish you could do that. I have not stopped singing throughout all this in my dreams and to be once again performing and doing what I love to do."

I know how that feels.

More: Divinyls singer Chrissy Amphlett dies. (ABC News (Australian Broadcasting Corporation, thanks Eliot)

More at Rolling Stone, and Reuters.

Once again, every single obit I just linked to there uses the trite phrase "battling cancer," "fighting cancer," or "lost her battle with cancer." Once again, I will take the opportunity to remind the world that cancer is a biological process involving cells that refuse to do what they're supposed to do inside our bodies, not a "fight" that the weaker souls among us "lose." Please stop using that phrase.

Scanxiety, or how waiting for cancer tests makes you crazy

Xeni Jardin — Fri, 08 Mar 2013 17:19:59 +0000

Photo: Me in an MRI, by Tara Brown

I had a rough week, this week. I came back from a transformative, restorative trip to Hawaii, where I did lots of creative work for Boing Boing and for personal projects. The morning after my flight home, I dove in to a week of medical tests. My primary treatment for breast cancer is complete (chemo/surgery/radiation), but that doesn't mean cancer's over. I have to take a drug for 5 years (or more, who knows), and there is at least one more surgery ahead that I know of.

But there is also much monitoring ahead. I have to get various blood tests and exams and scans every 90 days, 6 months, and annually. Scanning my body for any new cancer, scanning the horizon for bad news, and hoping it never arrives.

The big thing this week was tumor marker blood tests, which are used to see if your blood shows signs that cancer is returning and progressing. The tests are very much imperfect, a blunt and controversial tool. What they tell us is a matter of debate. Some oncologists don't even use them. Mine does, and I do respect why, and I comply.

When I received my tumor marker results, I flipped the fuck out, even though my oncologist's office told me they were "fine." The numbers showed a slight increase in my tumor markers. How the fuck can that be fine?

Bad numbers aren't supposed to go up. I cried. I panicked.

"Need to hear your voice," I texted my boyfriend. "Cancer test scared me."

I spoke to my boyfriend and my cancer shrink and cried some more, and then emailed cancer friends I knew would understand (they did). At some point I stopped crying.

I asked my oncologist's office for details. The numbers I got didn't make me feel fine. I got results that were presented as good news, but the whole process confused and upset me. Why do results from other tests for other tumor markers that my friends with other kinds of cancer get mean one thing, while the numbers from the type of marker we test for in my case mean something completely different?

If my number is up a little bit, does that number represent the first tiny step in a long stairway towards death? Or is that data point just noise, masquerading as signal?

I had to ask doctors (and fellow cancer patients whose take on medical math I trust) to help me figure out whether this score increase meant I was moving closer to dying, or was just a blip of fluctuation that told us nothing bad. It was the latter.

Does this sound like it would make you crazy? It makes me crazy.

If I didn't have cancer, my behavior around the tests would definitely be what you would call crazy. But when you have gone through the ringer with a disease that wants to kill you, and still may, it's not a crazy reaction at all. It's more like PTSD.

And as traumatic as it can be, scanxiety is better than the alternative: being dead, so there's nothing to test, and no odds to wonder about.

I was tweeting yesterday about how frightening and stressful the experience was (I do this sometimes, when I'm upset), and some cancer friends sent along links to two essays that articulate scanxiety beautifully.

Our Wait-and-See Culture, by Robert J. Abramson, in today's New York Times:

As the physicist Niels Bohr said, “prediction is very difficult, especially about the future.” But this is the exact position that many physicians and patients find themselves in. We must make life-altering decisions based on incomplete information. In my case, the decision to follow up in six months appeared to be the prudent one — and it turned out to be the right one as well. My six-month follow-up revealed the lesion unchanged. It was recommended that I follow up in another 6 to 12 months.
Welcome to the “follow-up culture.” The danger here is that we will always be living in the future: the scan was O.K., but what about in a year? No advances in medicine, as remarkable as they may be, will ever provide us solace for this predicament.
And yet, as disturbing as it is, it also provides an opportunity to live our lives to the fullest each day. As some Eastern philosophies tell us, life is like a river, in perpetual motion, and when we flow with it we attain a level of tranquillity. My patients and I will never know what the future holds for us in this new medical calendar, but my hope is that we can come to terms with the river, make friends with it, and allow it to teach us to be present in the here and now.

And, from Tom Roush, who follows me on Twitter, "Point and Click."

The essay describes a response Tom gave to a friend who said about Tom's periodic cancer screenings, “So, you must be used to it by now.”

It's not something you ever get used to, as Tom explains so perfectly here:

“It’s like every six months, someone holds a gun to your head, and they slowly squeeze the trigger. You can hear the springs in the gun compressing, you feel the muzzle shake a little as their muscles quiver, and you tense up, anticipating the explosion. Adrenaline pours through your body. You try to keep from shaking, from crying, because the gun exploded twice before, and you don’t want to go through that again.
This time, there’s a loud “click” of the hammer slamming down on an empty chamber. Just that sound explodes in your ears. Every muscle in your body jolts tight as the sound echoes – then rings away.
No bullet this time.
Good.
But it takes awhile to recover.
And no… you don’t ever get used to it.

This.

My tests this week were the first time post-treatment that we compared new tumor marker data against previous (post-treatment) tumor marker data. So, the scariness was amplified by the fact that this process was new for me.

Another 90 days from now, when we test again, my reaction may be different. When we do the next mammogram, MRI, or other periodic screenings, my reaction might be different.

I do have good support resources.

I am getting better at coping with all of this as it goes on.

But that's just it.

It goes on. And on. And on.

To be a cancer patient is to be forever at the mercy of medical math.

It is not easy. And you never get used to it.

Because it is rare, male breast cancer often diagnosed only at late stage

Xeni Jardin — Tue, 26 Feb 2013 20:31:23 +0000

"About 2,240 cases of breast cancer are diagnosed in U.S. men a year, compared with about 232,000 cases of invasive cancer among women," writes Laura Hambleton in the Washington Post. "And because male breast cancer is rare, most men with the disease do what Bogler did and ignore the symptoms: lumps in a breast, discharge from a breast or other changes in a breast or nipple." Peter Criss of the rock band KISS is among the male breast cancer patients mentioned in the article. (HT: Aileen Graef)

First-person account of how cancer can affect a marriage

Xeni Jardin — Mon, 25 Feb 2013 21:37:01 +0000

Ask women about their relationship, writes Jody Schoger, and "you’re apt to hear variations on this theme, 'He never blinked,' or 'He really showed me how strong a man he truly is.' In other words, you’re not apt to hear what it’s truly like for some women." On her blog, she publishes a first-person account from an anonymous contributor that rings true for many. The tl;dr: the impact of cancer is really, really hard for both partners in a relationship—before, during, and after treatment.

Long read on US health care woes in TIME: "Bitter Pill: Why Medical Bills Are Killing Us"

Xeni Jardin — Thu, 21 Feb 2013 23:53:52 +0000

A must-read by Steven Brill in Time on the brutality of medical bills in America, for cancer patients and others in need of medical care.

How one mom with metastatic cancer talks to her children about cancer

Xeni Jardin — Tue, 05 Feb 2013 23:02:56 +0000

My friend Lisa Adams, who coached me through so much of my treatment for breast cancer, recently learned that her breast cancer returned as metastatic disease. She has been writing about cancer eloquently and beautifully since she was diagnosed, and so much of what she's published since her disease advanced has been powerful, brutal, essential reading. Her most recent post, which appears on HuffPo, is about an hour-long talk with her daughter that started with her first question, "Are you scared?"

She asked questions about genetics and risks of getting cancer to what kind of treatments I might need. She asked me again, as if to confirm for herself, "It's not curable, right?" We talked about my writing, about being public with my health status, about being open and honest with her and her brothers.
I told her that yes, I was scared. I explained that my fear usually comes from the unknown, in this case just how I will respond to treatments. I told her it was okay to be scared. That it's normal. That sometimes that fear makes you brave enough to do things you don't think you can otherwise do.
I told her that I understood that sickness could be scary, that I didn't want her to be afraid of me as I got sicker someday. "I would never be afraid of you, Mom. I'm only afraid of cancer," she said. My heart squeezed and thrashed and the tears flowed.

More: Lisa Bonchek Adams: The Hardest Conversation.

Pregnancy drug popular from 1950s-70s blamed for breast cancer in "DES daughters"

Xeni Jardin — Thu, 10 Jan 2013 16:31:00 +0000

Drug giant Eli Lilly this week settled a lawsuit brought by four sisters with breast cancer who believe their disease was caused by a pregnancy drug their mother took during pregnancy in the 1950s. The settlement could lead to more such claims being won by other women with breast cancer whose moms took Diethylstilbestrol, also known as DES, a synthetic estrogen widely prescribed until 1971. The drug was also widely administered to US dairy and beef cattle, via their feed.

Above, an ad placed by a DES drug maker in major medical journal in 1957, urging obstetricians to prescribe it to all pregnant women. At the time, the drug was not yet patented. The small print reads:

Recommended for routine prophylaxis in ALL pregnancies... 96 per cent live delivery with desPLEX in one series of 1200 patients - bigger and stronger babies, too. No gastric or other side effects with desPLEX - in either high or low dosage.

DES Action Info, a nonprofit that connects people exposed to DES, says:

It is now known that DES exposure is related to health problems in the sons and daughters of the women who took it, and in the women themselves.

The National Cancer Institute has an explainer on DES, including its effects on sons and daughters of women who took it. A CDC page on DES is here. DES Action has a well-documented timeline of the drug's history here.

The issue doesn't just affect women: Male children and grandchildren of DES users also face elevated risks of certain kinds of cancers, according to these sources.

There's a good LA Times piece on the DES settlement here. And CBS News ran a report earlier this week, before the settlement was reached in this most high-profile and precedent-setting "DES Daughters" case.

(Images courtesty DES Action)

On cancer and the holidays: "You look great"

Xeni Jardin — Mon, 31 Dec 2012 16:25:53 +0000

“'You look good,' they say. This a compliment. Sometimes they say, “You don’t look sick at all. You’d never know.' That is shorthand for, 'You don’t look like you’re dying but we know you are.'” Lisa Bonchek Adams, who has metastatic breast cancer, writes about what it's like to have cancer and deal with relatives and friends who say the wrong things during the holidays.

Illinois state AG investigates alleged breast cancer charity scam "Boobies Rock"

Xeni Jardin — Sun, 02 Dec 2012 18:34:29 +0000

With a name like "Boobies Rock!" you know it's a totally legit breast cancer fundraiser.

Last week, the Chicago Sun-Times first exposed allegations that "Boobies Rock!," a for-profit business that purports to fund-raise for “breast-cancer awareness” in Chicago and around the US, wasn't actually funneling funds to charities it claimed to benefit.

Now, the paper reports that the Illinois attorney general’s office has begun investigating the company.

At left, the president of Boobies Rock!, Adam Shyrock. I don't know what could possibly not be forthright about a breast cancer "awareness" effort run by a guy who looks this douchey, especially when the project, which is about an awful terrible disgusting disease that kills people, is called "Boobies Rock!" (the exclamation point, it should be noted, is part of the name).

But hey, I was diagnosed with cancer exactly one year ago, and "Boobies Rock!" expresses perfectly how I feel about breast cancer after 12 months of chemotherapy, breast amputation, mortal terror, reconstructive surgery, vomiting, panic attacks, brain damage, radiation, and other stuff too gross to list.

A sidebar that ran with the original Sun-Times report cautioned readers, "before giving to a charity, questions to consider":

• Are its finances well-managed?
• Does an independent board oversee the organization?
• What is the organization’s mission, and does it offer proof regarding how it suports that mission?

Oh hey guys, here's another one, for the shortest list of questions to ask ever:

Does it have a fucking stupid and insulting name like "Boobies Rock"?

Thumbnail at left: Jessica Thompson of Chicago, with one of the shirts she sold for Boobies Rock at sports events.

“I was assuming it’s a charity,” she told the paper.

Yep. You read the t-shirt correctly. "Nice Jugs."

(HT: @LizSzabo; photo: Andrew A. Nelles/Sun-Times Media)

XKCD on cancer, and commemorating a biopsy-versary

Xeni Jardin — Fri, 30 Nov 2012 19:20:39 +0000

Today's edition of the webcomic XKCD rings true for me, as I'll be marking the one-year mark from my own diagnosis tomorrow. Randall, much respect. I wish both of you the best.

New PRI's The World radio series on the global reach of cancer

Xeni Jardin — Wed, 28 Nov 2012 19:02:35 +0000

The daily PRI radio news program The World will soon air a week-long series about cancer's global reach.

As regular Boing Boing readers know, cancer's been a frequent blogging topic of mine since I was diagnosed with breast cancer almost exactly one year ago this week.

From what host Marco Werman sent along, it sounds like a really great reporting series, and I'll definitely be tuning in.

Here's a preview of one episode that focuses on cancer care in Uganda. More below.

Part I: “Cancer’s Lonely Soldier” (airing December 3)
Dr. Jackson Orem heads the Uganda Cancer Institute. Until recently, he was the only oncologist in a country of more than 30 million people. He argues that cancer deserves the same attention given to other afflictions in the developing world, such as AIDS and malaria.
Part II: “Pink Ribbons to Haiti” (airing December 4)
Haitian women know little about breast cancer, and those who contract it rarely receive treatment. An American charity and its local partners are trying to change that, but it’s not easy providing cancer care in the Western Hemisphere’s poorest country.
Part III: “An Ounce of Prevention” (airing December 5)
Cervical cancer is far more common – and more deadly – in the developing world than in the United States. One reason: women in the U.S. receive routine screening that catches the disease in its earliest stages. A low-cost test being rolled out in India could save tens of thousands of lives there each year.
Part IV: “The Infectious Connection” (airing December 6)
Cancer can be triggered by infectious diseases, especially in impoverished parts of the world. Scientists in the U.S. and Africa are working to unravel how viruses and bacteria cause malignancies. By breaking that cycle, they hope to prevent tumors from forming in the first place.
Part V: “Dispensing Comfort” (airing December 7)
Modern cancer care involves more than the latest surgical techniques and chemotherapy drugs; it also offers freedom from pain. Yet basic palliative care, in the form of morphine, is almost nonexistent for many patients in developing countries. What is being done to bring them pain relief?

PRI's The World has released two audio previews, to give you a feel for the series: here's a link to the cervical cancer story audio preview.

And here is the pain and palliative care tease.

(Thanks, Tory!)

New evidence of ‘chemo brain’ proves cognitive damage from cancer treatment isn't ‘all in your head’

Xeni Jardin — Wed, 28 Nov 2012 17:23:12 +0000

Image: RSNA. The bright yellow and lime green in the left superior medial frontal gyrus sharply contrast the cool blue hues in the same region on the right. The brain uses glucose for energy; bright colors represent large decreases in glucose usage by the brain.

Cancer survivors everywhere are nodding in agreement today: "chemo brain" is real, as those of us who have experienced the cognitive damage associated with chemotherapy already know. Memory loss, problems with concentration and attention, speech and writing difficulties, even problems with everyday math or number identification are common during and long after chemo ends. But now, researchers understand a little more of the how and why.

As noted in my previous Boing Boing post, a new study presented this week at the annual meeting of the Radiological Society of North America (RSNA) used PET/CT scans to show physiological evidence of chemo brain, a common side effect in patients undergoing chemotherapy for cancer treatment.

The team led by Dr. Rachel A. Lagos at the West Virginia University School of Medicine and West Virginia University Hospitals in Morgantown, W.V. sought to identify the effect of chemotherapy on brain function, rather its effect on the brain's appearance. By using PET/CT, they were able to assess changes to the brain's metabolism after chemotherapy, and found measurable physiological changes.

In a group of 128 breast cancer patients, neuroradiology analysis software was used to calculate brain metabolism within 63 brain regions. Results were clinically correlated with documented patient history, neurologic examinations, and chemotherapy regimens. In women treated for breast cancer, the scans demonstrate "statistically significant decreases in regional brain metabolism" that correlate to "chemotherapy regimen, neurological examination and symptoms of chemobrain phenomenon."

On NBC Nightly News, cancer survivor and advocate Jody Schoger, whom I met on Twitter during my treatment, speaks about her experience with chemo brain and what the news means to her. She's an eloquent, powerful voice for all of us who suffer through the long-term side effects of treatment, and the challenges of living with this disease. NBC's science correspondent Robert Bazell did a great job with the story. You really gotta see this piece.

Below, the piece that ran on NBC Nightly News last night, followed by a longer-form edit of Jody's observations on how we heal from chemobrain. In a word: gradually.

Image: RSNA. A map shows the front of the brain with bright yellow and lime green hues predominating along the left half of the brain medially. This region corresponds to the left superior medial frontal gyrus, the part of the brain known for its role in prioritizing thoughts and actions.

New study identifies physiological evidence for "chemobrain" in cancer patients

Xeni Jardin — Tue, 27 Nov 2012 19:42:59 +0000

A study presented this week at the annual meeting of the Radiological Society of North America (RSNA) offers new evidence that chemotherapy can create changes in the brain that affect cognitive function. Using PET/CT scans, researchers detected physiological evidence of chemobrain, a common side effect of chemo in cancer treatment.

Instead of studying chemotherapy's effect on the brain's appearance, [Dr. Rachel A. Lagos] and colleagues set out to identify its effect on brain function. By using PET/CT, they were able to assess changes to the brain's metabolism after chemotherapy.
"When we looked at the results, we were surprised at how obvious the changes were," Dr. Lagos said. "Chemo brain phenomenon is more than a feeling. It is not depression. It is a change in brain function observable on PET/CT brain imaging."

A personal note: Hell yes it's real. I have experienced profound damage in my ability to concentrate, remember names and experiences and tasks, and... wait what were we talking about? Also typos. I make more typos. No, seriously, chemobrain is one of the most upsetting parts of cancer treatment. Getting used to a damaged body is one thing; realizing your very mind has changed is another.

But for those about to experience it, here's the thing: you adapt. You get through it. You will function differently, but you will function. Let my posts here on Boing Boing, typos and all, be your proof.

Here's the full press release.

(thanks, Jody Schoger)

Last wish of married lesbian soldier dying of breast cancer: "Let DOMA die before I do"

Xeni Jardin — Tue, 27 Nov 2012 18:42:35 +0000

Charlie Morgan, a 47-year-old career soldier in the late stages of metastatic breast cancer, says she hopes to live long enough to see the federal Defense of Marriage Act (DOMA) overturned, so that her wife will receive the benefits that a widow in a hetero couple would receive. “I’m praying that they take it up soon,” Morgan told the Washington Post in a phone interview from her home in New Durham, NH “It’s my motivation for staying alive. I really need to be alive when they actually do overturn DOMA, otherwise Karen is not guaranteed anything.” Read the rest here.

Amazons with a Cause

Jasmina Tesanovic — Tue, 27 Nov 2012 17:41:55 +0000

Why are women first to pay for every crisis? In every society, capitalist, socialist, or transition? It's because the bodies of women are expendable.

I always noticed how women over eighty in Turin looked incredibly well, beautiful and loved and taken care of: desirable, because old and valuable. I connected this to Italy's long-established and sophisticated health care system. Italian hospitals were famous for methods which preserved the dignity of the patients, in tumor cures, especially breast cancer: the "invisible mastectomy" was invented in Milan. Rather than simply intervening in crisis, they were good at illness prevention and attentive follow-ups.

The economic crisis and financial harassment of Italy has reached this safe haven of health and dignity. In Turin, one of the best clinics for cure and prevention of breast cancer is about to be closed. The patients are on the streets, their appointments cannot be scheduled, they are paying for their urgent operations because their doctors cannot help them. The doctors are on the streets too.

Public health care in Italy was guaranteed as one of the basic human rights: without class race of gender discrimination. We are all equal in front of death.

The Valdesian hospital was founded by Italy's Protestant minority; it was about spirituality and charity rather than the global health market. However, the church passed the hospital to the state some years ago. They naturally assumed that it was in good hands, but as this tiny church is to the state, the state is to the market.

Although "Italy is not a brothel," as they said during the Berlusconi scandals, the flesh of women is negotiable by other means.

Protests, sit-ins and negotiations have failed to save the hospital. So last weekend, Turinese women decided to take action. They organized a public booth to photograph their breasts anonymously.

They plan to release an affresco of hundreds of their depersonalized female bodies, as a warning.

They are merely doing publicly what the hospital did less visibly.

Next step is the big demo planned for December first, to be followed by a sit-in for December 7th. On that day, the police are scheduled to shut physically the hospital.

It was a place of solace where women felt like respected human beings, and the attack on it has made them into Amazons with a cause.

Stanislaw Burzynski, dubious cancer doc, gets off on legal technicality

Xeni Jardin — Tue, 27 Nov 2012 17:29:52 +0000

Oncologist and cancer-woo-debunker Orac has more on the legal details that allow this man to keep practicing medicine in Texas: "the dubious doctor known as Stanislaw Burzynski, who charges desperate patients with advanced (and usually incurable) cancer tens and even hundreds of thousands of dollars to participate in his 'clinical trials' of antineoplastons, compounds that he claims to have isolated from urine and that he now represents as a promising new treatment that can do much better than existing therapies with much less toxicity, even though there’s no evidence that it can."

The Texas Medical Board has abandoned its prosecution of Burzynski, as noted in a previous Boing Boing post here with guest commentary by fellow anti-cancer-woo writer Robert Blaskiewicz.

The legal underpinnings of the case will be interesting to some, and too tedious for others, but here's the tl;dr from Orac's post: the outcome does not make the case that Burzynski's "science" is valid. The board simply found that, "as a matter of law, the TMB couldn’t bring action against Burzynski on the basis of actions performed by doctors under his supervision."

I’m not going to lie or downplay it here. The dismissal of the TMB action against Burzynski is a major setback to efforts to stop what Burzynski is doing. He’s now basically free to continue to do what he’s been doing for the last thirty years. Once burned, it’s unlikely that the TMB will take another crack at him any time soon. The last time it did was back in the 1990s. Will it be in the 2020s before a future board decides to try again, or will Burzynski retire or die before then, leaving his son Greg to carry on the family business?

The fact that the Texas Medical Board lost this fight is nothing short of a tragedy for desperate cancer patients and their families throughout America. It means more cancer patients who are afraid of dying and don't understand oncology enough to know when they're being lied to by an exploitative opportunist will face a very bleak fate indeed. We who have cancer deserve real medicine. We deserve honest care. We deserve a legal system that protect us from quacks who treat our desperation as an opportunity to cash in.

Update: Fred Trotter writes, in the comments below:

We are using Stanislaw as an example case for exercising our DocGraph (related Wired News article). Interesting facts so far: It appears as though Stanislaw is not billing Medicare at all (makes sense). There are several doctors that share an address with Stanislaw, so it is possible to detect and "name" his "team", and they do not appear to bill Medicare either. This kind of utterly isolated medical team might be something that can be used to find other qwacks? not sure, but it is interesting data.

Texas Medical Board discontinues prosecution of noted cancer quack

Xeni Jardin — Mon, 26 Nov 2012 17:31:19 +0000

As regular readers of this blog know, cancer quackery is a topic relevant to my interests as a cancer patient.

Robert Blaskiewicz has written extensively about the epic quackery of one of the most well-known "cancer cure" promosters, Stanislaw Burzynski (left).

The Texas-based "alternative cure practitioner" fails to liberate patients from cancer, but has a remarkable talent for liberating them from their money.

Today, Blaskiewicz shares an update on the Texas Medical Board's long-running prosecution of Burzynski.

The short version: He's free to continue exploiting cancer patients there.

Come to think of it, a ham sandwich could probably get a medical license in Texas, these days.

Robert Blaskiewicz tells Boing Boing:

It’s with a heavy heart that I must report that Stanislaw Burzynski, the Houston cancer quack who charges exorbitant amounts to the most desperate terminal cancer patients to enroll in bogus clinical trials, retains his medical license in Texas (PDF) and is free to continue to do what he has been doing for 35 years. On Tuesday, the Texas Medical Board decided to discontinue its prosecution of Burzynski. This comes on the heels of the judges’ decision that Burzynski was not liable for the actions of the physicians in his employ. According to the Motion to Dismiss: “[the judges] reaffirmed in Order No. 16 that [the law in question] did not address civil liability for physicians other than surgeons working in operating room settings or stand for the proposition that the actions of a licensed physician may create administrative liability for the license of another physician. The Honorable [judges] concluded they would not consider evidence of administrative vicarious liability.”
This ruling effectively torpedoed the case. The Medical Board seems to have never even have gotten the opportunity to address the facts regarding these patients’ treatment. There is a chance that the otherwise unemployable doctors who work for Burzynski will lose their licenses (the patients in question certainly did not go into the Burzynski Clinic and treat themselves). Nonetheless, I’m sure that it will come to a shock to the people who empty their bank accounts at Burzynski’s feet that Burzynski does not officially treat them and assumes absolutely no responsibility for their outcomes.
Burzynski supporters (it’s amazing, but yes, even this guy has supporters) have trumpeted this as some sort of vindication of the treatment, which of course it’s not. He still, after 35 years, does not have a single clinical trial to back up the claim that his treatments work, a fact reinforced recently by an order from the FDA to Burzynski (PDF) to stop promoting his treatment, antineoplastons (ANP), as if it were safe and effective.
Nonetheless, according to reports by patients on social media, the shonky treatment and unfathomable medical advice proceed as usual at the Burzynski Clinic. A heartbreaking post from the family of one young cancer patient went up on facebook this week:
According to David Gorski, a clinical oncologist, researcher, and patient advocate who has written extensively about Burzynski and his bad science, when a cancer responds to treatment, it will usually shrink from the outside or open up on the inside like disgusting Swiss cheese. Necrotic material in the center more likely means that the tumor has outgrown its blood supply and probably reveals nothing about whether or not the tumor is responding to treatment. This would have been understood by real doctors.
Currently, the only way that Burzynski can legally give ANP to patients is if they are part of a clinical trial and are given a special medical exemption by the FDA to participate. Why the FDA continues to pour patients into the Clinic, which has not completed and published a single study out of dozens and dozens of trials over the decades is beyond me, and the FDA has been uniformly unresponsive to FOIA requests about the ANP trials and the patient approval process. Patients deserve better than Burzynski, and they deserve better protection than what either the Texas Medical Board or the FDA is currently providing.
----
If you want to help protect patients, the best thing that you can do right now is WRITE about Burzynski. You can also make a point of linking to sites that have reliable information about what really goes on at Burzynski’s clinic. Don’t link directly to the man, his site, or his patients’ sites. We need to clog the channels that people usually use to reach this charlatan with reliable information.

Thanks for the update, Bob.

We've written about Burzynski and cancer quackery here on Boing Boing before; related archives below.

Possibly the worst example of "pink nausea" and breast cancer exploitation ever

Xeni Jardin — Mon, 19 Nov 2012 16:55:45 +0000

As I said to cancer pals on Twitter earlier today, if my loved ones arrange a funeral for me where everyone is dressed like this, I swear unto you that I will come back from the dead and stab everyone in the face. (via @regrounding)

On Stanislaw Burzynski, "antineoplastons," and cancer cure scams

Xeni Jardin — Sun, 11 Nov 2012 15:35:43 +0000

At Disinfo.com, guest contributor and cancer-scam-debunker Bob Blaskiewicz has written a piece about Houston-based Stanislaw Burzynski (photo at left). Burzynski's advocates would like you to believe is a persecuted savior of cancer patients who holds the key to a cure that Big Pharma and the FDA want to suppress.

"An important sign of quackery is the depiction of the doctor as a lone genius fighting against special interests trying to suppress crusading work," writes Blaskiewicz— but Burzynski's associates appear to be engaging in suppression, themselves. Blaskiewicz writes about the "thuggery of some of his supporters (which included the creation of a website at the same IP as burzynskipatientgroup.org that defamed numerous skeptics, myself included, as pederasts)" to distract from Burzynski's decades-long failure to produce "a single convincing study" about his treatment's efficacy.

Here at Boing Boing, Cory has written about their history of legal threats to online critics, and scientists' debunking of their trials.

While Burzynski fails to liberate his patients from cancer, he has a remarkable talent for liberating them from their money.

From the position of an informed patient advocate, everything about the Burzynski Clinic reeks of medical charlatanry. He is not a trained oncologist, but he is treating cancer. He posits a novel mechanism for cancer (a patient’s lack of antineoplastons) that is unrecognized in the medical literature as a cause. His ANP is marketed as an alternative to chemotherapy, but he gives patients chemo cocktails mixed with “terrifying” doses of sodium phenylbutyrate, mixtures that have not been adequately tested for safety and which causes hypernatremia in his patients. He has sold ANP not only as a cancer treatment, but also as an HIV treatment, an unjustified action for which he was severely disciplined by the Texas Medical Board. Checks for donations that are meant to go “toward the continuation of the Clinical Trials and Research” are to be made out directly to “S.R. Burzynski, M.D., Ph.D.” He has initiated over 60 phase II studies over the decades and seems to have completed exactly zero of them. Three independent investigations, published together in The Cancer Letter, concluded that his studies were “uninterpretable,” and that Burzynski defined successful treatment as “stable disease,” a lowered standard that no other oncologist or researcher accepts.

Burzynski's medical license is under review for an array of ethical violation charges, including “failure to meet the standard of care, negligence, lack of informed consent, unprofessional conduct, and nontheraputic prescribing.”

The fact that Tony Robbins, Dr. Oz, and "alternative physician" Joseph Mercola endorse his work should tell you plenty.

This piece, it should be noted, was written in response to a prior, credulous Disinfo.com guest post, "Burzynski: Fighting the Big Pharma Cartel to Cure Cancer," a fawning piece on the advertorial film about Burzynski.

And, full disclosure: I read that one, and complained to Disinfo via Twitter that this piece perpetuated (no pun intended) disinformation and lethal bullshit woo about cancer, and suggested to Disinfo that Blaskiewicz be invited to write a counter-opinion piece. Kudos to Disinfo for presenting a science-based view.

I am not an impartial observer. I am a cancer patient, no fan of "Big Pharma" or the FDA, and no fan of the brutal side effects of the evidence-based treatment protocols that remain the best we have to fight this disease. But the one thing I hate more than cancer are opportunistic bastards who exploit our fear of death, and that of our loved ones, to line their pockets while they watch us die.

Read: "Stanislaw Burzynski and the Antineoplaston Scam," by Bob Blaskiewicz, at Disinformation.

UK surgeon accused of misdiagnosing cancer to perform unnecessary surgeries on women

Xeni Jardin — Wed, 07 Nov 2012 21:09:42 +0000

So-called "rogue surgeon" Ian Paterson has been suspended by Britain's General Medical Council after accusations he performed "unnecessary or inappropriate" breast operations on over a thousand women in the UK.

Investigators claim he misdiagnosed at least 450 of those women with breast cancer when they were in fact cancer-free, performing unnecessary mastectomies and lumpectomies, and placing them on brutal treatment regimens when they had no cancer to treat.

There are testimonies from some of the women here. One of the falsely diagnosed women even planned her own funeral, believing she had advanced metastatic disease. Some of the women are suing the hospitals that allowed this to happen.

Going through surgery, chemo, radiation, and drug treatment for breast cancer was, for me, a living nightmare. It has left me feeling violated, damaged, and broken. I can't even begin to imagine what it's like for these women, who didn't even have the disease in the first place. Words truly fail me. If the claims are true, and he did what he did for some kind of perverse pleasure from harming others, I hope this sicko ends up in jail for the rest of his life.

(photo: Accused breast surgeon Ian Paterson, via Guardian. HT: Gordon Rae )

Breast cancer patients: Stanford launches lymphedema registry study

Xeni Jardin — Tue, 06 Nov 2012 17:48:25 +0000

Lymphedema occurs in about 7% of breast cancer patients who have undergone sentinel lymph node biopsy (to see if disease has spread to these lymph nodes), and in greater percentage of patients whose nodes end up being removed (because one or more contain cancer) and patients who receive radiation therapy after breast surgery. Lymphedema is basically a chronic swelling of the affected arm, caused by trapped lymph fluid. It can be disabling, disfiguring, and extremely painful.

"Once lymphedema develops, it is permanent," says my friend Dr. Deanna Attai, a breast surgeon in Burbank, CA. "Physical therapy can help minimize swelling and other complications, but there is currently no cure. Early recognition and prompt treatment definitely makes a difference."

Dr. Attai points me to news that Stanford University has opened a national registry study to gather information from breast cancer patients with and without lymphedema. "The goal is to gain information on what type of monitoring is being performed and how that might impact outcomes," she explains. More here and here.

I'll be enrolling, for sure—I'm at high risk, personally, because of the specifics of my treatment. If you or a loved one has breast cancer and meets the study criteria, pass it on.

Sexy breast cancer campaigns anger patients

Xeni Jardin — Tue, 30 Oct 2012 21:49:08 +0000

A wonderful article by Liz Szabo in USA Today on "I heart boobies," "save the ta-tas," and all those other horrible sexualized breast cancer campaigns that raise dubious funds for dubious goals and leave those of us who have the disease feeling demeaned. There is nothing sexy about breast cancer, and Szabo does a fantastic job in this piece explaining why. Above, one of the worst such campaigns I have ever seen.

"All of us are really fed up," my friend and fellow person-with-breast-cancer Lani "Chemo Babe" Horn says in the article. "Save the tatas? No, save the women. A lot of us had to give up our tatas to live."

Snip:

When diagnosed with aggressive cancer at age 38, Horn says, saving her breasts was the last thing on her mind. All she could think about, she says, was staying alive for her three young children. "Every time I thought, 'I can't climb back into that chemo chair,' I thought, 'I have to be able to tell my kids, 'I did everything possible.'"
The new breed of ads is especially cruel, Horn says, because breast cancer strips women of many features associated with femininity and beauty. Chemotherapy and surgery to remove the ovaries can both improve a woman's odds of survival, but at the cost of plunging her into instant menopause.
Chemo can make women lose their hair, eyebrows and eyelashes. Radiation can leave women's chests feeling, as one survivor has described it, like "a raw piece of meat."
And beyond the chemo-induced nausea, diarrhea and vomiting, Horn says, long-term hormonal therapy can cause severe vaginal dryness, making intercourse too painful to contemplate. While many cancer survivors want more information about preserving their fertility and alleviating sexual side effects, very few get help, Horn says.

Read the rest, and forward it to everyone you know. Man, I'm so glad Pinktober is almost over.

Below, another horribly-conceived sexualized breast cancer campaign, this one from @letsfcancer.

I'm sure some of the people behind some of this stuff have good intentions, but then, why do they ignore the voices of breast cancer patients (myself included) who see this shit and say publicly and repeatedly, "What the actual fuck?"

In Greece, financial tragedy creates horrific conditions for cancer patients

Xeni Jardin — Fri, 26 Oct 2012 13:40:27 +0000

In the NYT today, a report on the plight of cancer patients in Greece who cannot afford treatment. The profile of a woman with breast cancer who delayed medical care for lack of funds is gruesome, and similar to stories one hears in the United States. [BB: breast cancer archives]

Striking new scientific study shows strikingly that scientific studies with striking results are often false

Xeni Jardin — Thu, 25 Oct 2012 18:43:34 +0000

The tl;dr: If a medical study seems too good to be true, it probably is. Eryn Brown in the Los Angeles Times writes about a statistical analysis of nearly 230,000 trials compiled from a variety of disciplines, published today in the Journal of the American Medical Association. The analysis by Stanford's Dr. John Ioannidis and a team of fellow researchers looked at study results claiming a "very large effect," and found that those claims seldom ended up being true when other research teams tried to repeat the same results.

One such example: the cancer drug Avastin. Clinical trials suggested the drug might double the time breast cancer patients could live with their disease without getting worse. But follow-up studies found no improvements in progression-free survival, overall survival or patients' quality of life. As a result, the U.S. Food and Drug Administration in 2011 withdrew its approval to use the drug to treat breast cancer, though it is still approved to treat several other types of cancer.
With early glowing reports, Ioannidis said, "one should be cautious and wait for a better trial."

Read the full LAT article. Here's the JAMA paper, but you have to be a paid subscriber to read it.

A breast cancer support network on Twitter: #BCSM

Xeni Jardin — Wed, 24 Oct 2012 20:00:19 +0000

#BCSM's Jody Schoger (L) and Alicia Staley (R) tweet and blog in Dr. Deanna Attai's Burbank, CA office. Photo: Robert Hanashiro, USA TODAY.

I'm very happy to see the wonderful #BCSM Twitter community receive some well-deserved attention in the form of a USA Today article this week. Through this group, which holds a weekly chat session on Monday evenings, I met some amazing women with breast cancer. I also met medical professionals who expanded my knowledge of the disease—and, how to survive the hell that is treatment. BCSM stands for "breast cancer social media," but people with other forms of cancer have used it as a model for conducting weekly chats and maintaining a kind of "bat-signal" for people with a given form of the disease. BTSM, for people with brain tumors, comes to mind. With each of these communities, you just include the hashtag in a tweet, and your cancer compatriots reply. It's hard to wrap your head around how vital this is unless you actually have cancer, but I see people using that hashtag all the time when they're in crisis, to receive a kind of comfort from the isolation that bad cancer-news brings. For instance, learning in a routine oncology checkup that their cancer has returned, and is now an incurable stage IV.

Snip from Liz Szabo's USA Today profile:

In most support groups, "one or two patients sort of take over, and it turns into a bitch session," Attai says. "That's not what you see with #BCSM. ... We have a common goal -- that's to educate, empower and support, and all that participate seem to embrace that."
Schoger says she's been pleased to see how BCSM helps women -- and the occasional man -- think through complex issues and become leaders.
"So many of these women are writing stronger blog pieces and are taking up the mantle in different breast cancer organizations," Schoger says. "I just love watching it."

Read the whole article.

I never went to an in-person support group during my primary treatment for breast cancer, but BCSM, and the informal mentoring relationships that developed out of it, were vital to me during the past year. So much so that it's hard for me to imagine what it would have been like to have had my first experience with cancer in a time when Twitter, and BCSM, did not exist.

Thank you, founding women of BCSM.

Hey, so is that new heat-sensing bra concept the best way to find breast cancer?

Xeni Jardin — Fri, 19 Oct 2012 17:15:08 +0000

Nope.

NY AG urges breast cancer charities to be transparent on where pink dollars go

Xeni Jardin — Thu, 18 Oct 2012 17:51:59 +0000

Consumerist reports that New York state attorney general Eric T. Schneiderman’s office did a year-long review of the so-called “pink ribbon” business, which I loathe almost as much as I loathe breast cancer itself. They came up with five guidelines intended to protect consumers.

How to make a "cancer medal" for a patient in your life

Xeni Jardin — Tue, 16 Oct 2012 16:31:18 +0000

I recently wrote about a meaningful gift I received from my friend Michael Pusateri, at the end of my primary treatment for breast cancer: this wonderful medal. So, today, Michael explains how to order one yourself. Give one to a cancer patient in your life! It's a really cool way to recognize what can be a confusing, ambiguous, strangely depressing milestone. Before all the "what's next" and "what if" thoughts take over, taking a moment to acknowledge the importance of that milestone is really beautiful.

A medal for completing breast cancer treatment

Xeni Jardin — Mon, 15 Oct 2012 19:08:30 +0000

Update: Make your own!—XJ

I was diagnosed with breast cancer in December, 2011. In January 2012, I began treatment. Chemo, surgery, radiation.

When I finished 6 weeks of daily radiation, the last of my primary treatment round, I tweeted about this milestone and my friend Michael Pusateri said I deserved a medal. Well, Michael's the kind of guy who puts a medal where his mouth is: he made me one. I love it, and I am grateful and proud. I want to wear it every single day for the rest of my life.

I want to give one to everyone I meet who makes it through to a similarly meaningful milestone in their cancer treatment. This is so much better than a pink ribbon.

During treatment, people sometimes told me that they would pray for God to cure me. I wanted to tell them to pray that science would advance to the state where it could do so. And that is my greatest hope, for me and for all of the men and women with this same disease. Science is awesome, but the science of cancer is still primitive. We need more research. We need science education, we need funding, we need things that are in increasingly scarce supply in America. And I'm not even talking about the chemo drugs.

I am not "cured," and my treatment isn't over. For instance, I just started taking an oral drug that I will have to take every day for at least the next 5 years. The side effects suck. I will be dealing with cancer for the rest of my life, and I hate that this is the new fact of my new life. The goal is to keep progression at bay. Still, the 2012 poison/cut/burn triathlon is over, and it feels surreal and amazing to be able to say this. Over. Complete. Done with.

It was not pink. It was torture. It was hell.

I am damaged. I am a different person. I occupy a body and mind that are drastically and permanently altered. I am just beginning to learn how to recover from treatment, how to cope with the resulting damage. Physical. Mental. Financial. Every imaginable aspect of my life has changed.

But damn, it feels good to be alive today, out from under the linear accelerator and off the gurney and the IV drip.

I am grateful for my doctors. I am grateful to the nurses, the anesthesiologists, the radiation therapists. I am grateful to my family, my friends, my loved ones, and all the fellow travelers I met online and in person.

I am grateful to the ones who fought for me to get access to good medical care. I am grateful to the people who held me when I cried, some of whom were strangers in the infusion room. I am grateful to the people who cleaned up my puke. I am grateful to the beautiful people who brought me food when I could not cook or shop, and to the ones who brought me cannabis so I could get food down. I am grateful to the ones who drove me to and from treatment when I was too weak, and to the ones who rescued me one day when I foolishly tried to drive myself and ended up stranded on the side of the road without enough strength to make it home. I am grateful to the ones who let me lean on them when I was not strong enough to walk; I am grateful to the ones who talked me through the moments of greatest psychological or physical pain, sometimes waking them in the middle of the night. I am grateful to the one who told me I was beautiful, and meant it, when I woke up missing parts of my body.

I am so very grateful for life. Life and love are all that matter.

(special thanks to medal-bearer Sean Bonner)