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

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.

Read the rest

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

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.

Read the rest

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

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.

Read the rest

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

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

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.

Read the rest

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

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."

Read the rest

Texas Medical Board discontinues prosecution of noted cancer quack

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.

Read the rest

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

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

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.

Read the rest

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

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.

Read the rest

Breast cancer patients: Stanford launches lymphedema registry study

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."

Read the rest

Sexy breast cancer campaigns anger patients

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.

Read the rest

In Greece, financial tragedy creates horrific conditions for cancer patients

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

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

#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:

Read the rest