Boing Boing 

Tig Notaro, breast cancer survivor, does a topless comedy set

tig

Tig Notaro performed at New York's Town Hall last night. She, like me, had breast cancer. She chose not to have reconstructive surgery.

She wore a gray sports jacket, jeans, and a pink button-down shirt. She unbuttoned her jacket. Someone in the back of the house shouted “Whooo!.” A catcall. Then Tig did something amazing.

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How I use medical marijuana: vaporizers, science, weed, and cancer

In this video my good friend Michael Backes, medical marijuana R&D expert and author of the book Cannabis Pharmacy (2014), shares some of his knowledge on the therapeutic power of pot.

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Beauty After Breast Cancer: kickstarting a photography book on our bodies, in treatment and beyond

“Katelyn — Wife, mother, nurse, dancer. Preventative mastectomy at age 29 due to high family risk, with silicone implant reconstruction.” Photo: Joseph Linaschke


“Katelyn — Wife, mother, nurse, dancer. Preventative mastectomy at age 29 due to high family risk, with silicone implant reconstruction.” Photo: Joseph Linaschke

My good friend Joseph Linaschke, who photographed me during my treatment for breast cancer, is Kickstarting a book by breast cancer patients for breast cancer patients: “Beauty After Breast Cancer.” I'll be in it, along with many other women living their lives post-diagnosis.

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R. Stevens of "Diesel Sweeties" webcomic designs LympheDIVAs sleeves for cancer patients


Lymphedema prevention garments designed for LympheDIVAs by R. Stevens.

Like many of my fellow breast cancer patients, the treatment I received (and am still receiving) places me at high risk for a condition called lymphedema that can cause painful and permanent swelling in the arms.

To help prevent lymphedema or control the swelling if it does happen, many doctors recommend we use compression sleeves. It used to be that the only kind of sleeves available looked like big ugly bandages, but LympheDIVAs, a company started by two women with breast cancer in Philadelphia, was one of the first to change that. LympheDIVAs creates sleeves and gauntlets so funky and pretty, you could imagine wearing them just because they look cool. I wear their product regularly, and have found them to be pretty great.

When I put on my "Lotus Dragon" one, people think I have an actual sleeve tattoo, which cracks me up. When I first started wearing it , I tweeted that it would also be fun to see Diesel Sweeties comic creator R. Stevens, who designs fun patterns for socks, gloves, and other wearables, create some stuff for LympheDIVAs. I am thrilled to learn that this happened! R. Stevens has designed four sleeve/gauntlet products for LympheDIVAs, and they all look great.

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Our Feel-Good War on Breast Cancer

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:

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Divinyls singer Chrissy Amphlett dies of breast cancer, MS

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."

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Scanxiety, or how waiting for cancer tests makes you crazy

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 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?

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

"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

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"

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

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"

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.

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On cancer and the holidays: "You look great"

“'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"

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).

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XKCD on cancer, and commemorating a biopsy-versary

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

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.

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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.

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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.

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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.

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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."

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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.

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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.

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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.

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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."

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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.

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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:

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