Breaking news on breast cancer

One of the most frightening facts of breast cancer is that two people may have the same diagnosis at the same stage, get the same treatment and then have remarkably different outcomes. One consequence of this is that while there is a lot of talk about cures for breast cancer, many women regard the diagnosis as a conditional death sentence.

An article published today online in Nature looks as though it will give us the tools to understand why outcomes vary and what different treatments can help those headed toward a worse outcome. The findings seem also to be well explained in the New York Times.

Two other types of breast cancer, accounting for most cases of the disease, arise from the luminal cells that line milk ducts. These cancers have proteins on their surfaces that grab estrogen, fueling their growth. Just about everyone with estrogen-fueled cancer gets the same treatment. Some do well. Others do not.

The genetic analysis divided luminal cancers into two distinct subtypes. The luminal A subtype had good prognoses while luminal B did not, suggesting that perhaps patients with luminal A tumors might do well with just hormonal therapy to block estrogen from spurring their cancers while luminal B patients might do better with chemotherapy in addition to hormonal therapy.

In some cases, genetic aberrations were so strongly associated with one or the other luminal subtype that they appeared to be the actual cause of the cancer, said Dr. Charles Perou of the University of North Carolina, who is the lead author of the study. And he called that “a stunning finding.”

“We are really getting at the roots of these cancers,” he said.

It looks as though there are going to have to be clinical trials, but there are a number of breast cancer types with discouraging statistics, and now we can hope those can be much more effectively treated soon. As far as I can see, these include ones for which some women have prophylactic mastectomies, since if you carry the gene for them having your breasts removed may be the best option.

Mistreating cancer patients: how about not making us sicker?

I asked a friend who specializes in medical history what it is about cancer patients, and the way they get attacked psychologically. She says there is a huge stigma about lung cancer, but she didn’t think it was true for other forms. So that leaves us without an answer to the question, How can anyone think it is a good idea to deal someone a blow at as they are goiing through treatment for cancer? And, believe me, they do all too often.

There are pretty bad figures about the national complaints, but there is also tons of anecdotal evidence that I’ve heard at my cancer center. Maybe part of it is that a lot of cancers occur when people might want to get rid of you and put a younger person in your place. But whatever it is, research is now making it completely clear: Stress can affect ways in which cancer cells grow and spread.

One of the US’s main cancer center just sent around the following:

there is growing scientific evidence that considerable psychological distress can affect the immune system, cancer specific biological pathways, and treatment recovery.

Some kinds of cancer love to spread; in fact, that’s often what makes them lethal. And they can create their own pathways. Stress can help them get the needed ingredients. It really can shorten lives and do so in very awful ways. Metatasis to the brain can lead to WBR, or whole brain radiation. There’s no way that’s something you want to do unless your life is at stake. You really, really don’t want to worry of you helped cause that because of your hostile behavior, however self-righteous you may have felt at the time. So concentrate on healthier people, OK? Not some experiencing an awful and still fundamentally mysterious disease.

An important message but …

This picture is making its way around the ‘net. Just about any message that points out the great injustice of our health care system gets positive points from me. But I’m a bit worried about the accuracy of his message. For why, see below:

So what worries could one have?  Actually, the flaws in the picture seem so obvious, that I’m having trouble believing they are real.  I mean, it would be pretty easy to get someone who actually looked like they had chemo, or at least the guy could have shaved and they could have hidden his hair under a cap. 

Here are some worries, then, given that his rads and chemo ended in August and his surgery was in May, and judging from my own case.  All I’m supposing is that the picture was taken after the rads and chemo. 

1.  If that scar is from a May operation then it looks way too red.   Four months after surgery about half my scar is now back to my normal skin color.

2.  Chemo really does a job on hair, including eyebrows and beard.  How long it takes to grow back varies, but it takes a long time just to get fuzz.

3.  That does not look like a recently radiated nipple to me.  Radiation changes the color of that  tissue and it takes some time to recover.  Plus, it is surprising the nipple was left; that’s not too unusual, but that “incision” is pretty big and would indicate the cancer wassignificant.  It’s often safer to take the nipple.

4.  Cancer does not automatically make one unemployed, contrary to what he seems to suggest.  It certainly can, but it is far from automatic.

One lesson here:  if you think someone at work is wearing a wig, don’t assume it is from superficial vanity.  They may be one of the employed cancer patients.

Further, the person at work may be hiding the cancer.  It is unbelievable how badly some people treat cancer patients.  Many, many people have very bad experiences.

Men discuss consciousness and Moral Cognition

Well, here we go again:

from Mark Phelan on Experimental Philosophy

CFP: Consciousness and Moral Cognition
Adam Waytz and I are guest editing a special issue of the Review of Philosophy and Psychology on consciousness attribution in moral cognition. As a recent post on this blog notes, “two favorite topics of X-Phi are morality and how we perceive the minds of others,” so I hope readers of this blog (and experimental philosophers in general) will consider submitting. Guest authors include: Kurt Gray (Maryland), Edouard Machery (Pittsburgh) and Justin Sytsma (East Tennessee State), and Anthony I. Jack (Case Western Reserve) and Philip Robbins (Missouri).

Submissions are due March 31, 2011.

The full CFP, including relevant dates and submission details, is available here.

Here is an abbreviated CFP: When people regard other entities as objects of ethical concern whose interests must be taken into account in moral deliberations, does the attribution of consciousness to these entities play an essential role in the process? In recent years, philosophers and psychologists have begun to sketch limited answers to this general question. However, much progress remains to be made. We invite contributions to a special issue of The Review of Philosophy and Psychology on the role of consciousness attribution in moral cognition from researchers working in fields including developmental, evolutionary, perceptual, and social psychology, cognitive neuroscience, and philosophy.

The cfp is from the Experimental Philosophy Site

Breast Cancer: The last day of radiation

When I was arguing that I’d prefer a lumpectomy over radiation, the breast surgeon and the plastic surgeon both took radiation as the big down side to a lumpectomy.  With a mastectomy I wouldn’t need radiation, though women with more advanced cancer often do.  I remember after the surgery I told the surgeon I was happy with the results.  “Well,” she said, “we’ll see what you say after radiation.”  O thanks.

I had the accelerated Canadian protocol, as it is called in the States, but still it was 5 days a week for 4 weeks.  Sometimes there were long waits since the machines were down; it usually took minimally 2 hours, including driving back and forth, waiting for the car, etc.  Patients getting radiation were given free valet parking!

Those waiting for treatment sit in a small area.  Everyone brought in some snacks for their last day, and we’d sit and tell our stories and sometimes munch.  Many women had also had chemo and had lost their hair.  There were very amazing women.  Women with very little hair can look like medieval saints.

The first picture has me in the kit we tended to wear to the radiation machine.  You won’t be able to miss the machine.  That big thing moves up and over one; for most of my treatment I got rays from two different angles.  It isn’t really frightening, but I felt it should be.

At my cancer center you ring a bell the last day of treatment, as in the picture below.  The technicians joined me and my partner.  This center apparently picks staff who are very friendly and upbeat; sometimes they seem to carry one’s mood forward.  The young man to the far left is in training, and he’s still permanently in a state of mild shock.

  If I look uphappy it was because (1) by this time in radiation one is often slowed down and not exactly chirpy; I had had in four weeks the dosage that most women are given in six, and I count myself fortunate that I have had only one automobile accident;  (2) I had been up to 2 am the night before because my child, who lives a thousand miles away, contacted us with an exceptionally serious medical problem, and my husband was getting a flight the next day to go see him; (3) I am investigating filing a complaint under the Americans with Disabilities Act, among other things.  Collecting documentation of a history of alleged adverse treatment is profoundly depressing.  It’s also the last thing I want to be doing.

It is astonishing what negative actions will be taken against  women on medical leave for cancer treatment. 

On the positive side, the Missoni sweater I have on cost 25% of its regular price, and I’m considered something of a miracle person since the radiation left my skin and breast looking almost exactly as they did before.  So there, breast surgeon and plastic surgeon!

I haven’t yet gotten around to investigating whether women with cancer have more problems on leave than men do.  One problem is that a lot of people get cancer after 40-50, and so their employers may be figuring that any excuse to replace them is not an opportunity to be missed.  The cancer center has all sorts of advisors on these sorts of issues, so I was often suggesting people contact them.  In effect, having cancer may just make one a good target whatever one’s gender.

I have an indirect connection with an organization that does documentaries, and when I get my strength back, I may look into seeing if one could be done about the women getting radiation at a major cancer center.  Everyone is going on going on, and finding a way to do so.  Since the group is very mixed in race, class, education and religion, the ways people were finding to keep going are very different.    Many, many of them had much worse reactions that I had; one young woman of 23 was being treated for reoccurrent breast cancer, and her whole chest and much of her neck was bright red and very itchy.     She will probably burn and peel for two more weeks.  She is here alone, as indeed are many people who come from around the world.  I gave her my name and phone number and said she could call me at any time about anything except spiders.

Another woman had cancer that also grew on the outside; she discovered it about 3 months ago, and she went immediately into palliative care.  There is no hope for her survival, and managing quite intense pain is the main objective of her treatment.

If I got the documentary organized, I’d looked at a number of different things, including some of the interesting research going on at my university.  But my main motivation is that I think the four weeks spent with these women forms a really valuable part of my life.  It is such a cliche to find deep value in the circumstances surrounding painful and scary treatment.  This time at least it was very true for me.

Next up for me is five years of what I think of as a mild poison.  Bone loss, joint pain and hot flashes are its major bad side effects.

Breast cancer: getting painted

I really had no idea that part of starting up radiotherapy was getting decorated:

(This is principally the middle-side of my chest; the long red line is part of the incision.)

It is very important that whatever delivers the radiation does so to a pre-determined site.  Somehow that site has to get marked.  I did know that in the olden days one could get a nice array of tatoos on one’s chest.  And even today some hospitals use tatoos that are  like tiny dots.  But mine, in an unusual recognition of patients’ sensibilities, realized that one doesn’t really want permanent reminders of radiation scrawled across one’s body.  So they use something like magic markers.  They problem is that since it can all come off, they are very generous with the markings.  Marks like  these marks are all across about 1/2 of my chest.  And in different colors, some going up to the collar bone.  Very jolly.

Though in the intervening 24 hours I have come to realize why they said that one should wear old, dark clothes.  That’s because the stuff comes off on anything that touches it.Since the paint comes off, it will get drawn back on, and then rubbed off and put back on, etc.  Fortunately, I’ll just have 4 weeks of this routine, while some people get 7 weeks of it.  That’s five days a week, as I may have said.  The remarkable thing for me is that with all these millions and millions spent on these high tech machines, why can’t anyone come to a sensible solution to the paint problem.

The millions and millions getting spent are now being spent on a new approach, which is really interesting, but maybe not exactly for the squeamish to read about:

Breast intensity-modulated radiation therapy (IMRT) – a technique that delivers radiation equally throughout the breast tissue and avoids radiation ‘hot spots’ in which some areas of the breast receive higher doses than others – reduces the skin side-effects that commonly occur with standard radiation therapy, according to a study in women with early breast cancer.

Women with early-stage breast cancer are generally treated with breast-conserving surgery, or lumpectomy, which minimises the amount of breast tissue removed, followed by radiation therapy to the whole breast. Clinical studies have shown that this treatment approach is associated with a low risk of the cancer returning (recurrence) while maintaining the shape of the breast as much as possible. It provides an effective alternative approach to mastectomy, in which the breast is completely removed.

The problem with radiation therapy to the whole breast is that about one-third of women suffer acute side-effects to the skin where the radiation is concentrated. The top layers of the irradiated skin are broken down and the area becomes ‘weepy’ in a process referred to technically as ‘moist desquamation.’  [Of course, when one is told about radiation, no one describes this process.  Women to whom it happens talk about their skin coming off.  Wine is thought to help prevent the effect.  Drunken, that is, not poured on.] 

The complex, three-dimensional shape of the breast makes it difficult to deliver radiation at a uniform dose throughout the entire breast using conventional radiotherapy equipment. This results in radiation ‘hot spots’ that can cause skin damage. Wedges are used to try to protect narrower parts of the breast and various other approaches, such as creams, have been tried in efforts to reduce skin problems due to radiotherapy, but none have proved very effective.

Breast intensity-modulated radiation therapy uses a computerised planning system that calculates the dose of radiation delivered to each part of the breast allowing for changes in its shape. Essentially, it allows rapid blocking of the radiation beam in areas of the breast where the dose of radiation needs to be reduced to achieve more even dosing throughout the changing contours of the breast.  [The planning is very expensive and involves a team of specialists; see below.]

Using the new radiotherapy strategy did not significantly reduce pain or improve quality of life. The researchers thought this may have been because the measures they used for these factors were rather non-specific. However, their results showed that the occurrence of moist desquamation was significantly correlated with pain (P=0.002) and reduced quality of life (P=0.003).

The distribution of radiation dose within the breast was significantly improved with IMRT. Less than one-tenth (7.7%) of the volume of the breast received more than 105% of the prescribed radiation dose with the technique, compared to more than one-sixth (16.9%) with standard radiotherapy.

Commenting on the findings, the researchers, led by Jean-Philippe Pignol from the Department of Radiation Oncology, Sunnybrook Health Sciences Centre, Toronto, Canada, said: “To our knowledge, this the first multicentre randomised trial demonstrating a successful reduction in acute radiation skin toxicity using an improved radiation technique, breast IMRT.”

“Our trial confirmed the dramatic improvement in the dose distribution homogeneity using breast IMRT, and demonstrated that it translated into a significant 17% absolute reduction in the frequency of moist desquamation.”

They considered that their results supported breast IMRT being offered to patients receiving adjuvant breast radiotherapy instead of the standard wedge technique.

US-based breast radiation therapy specialists agreed. Writing in an accompanying editorial, Bruce Haffty (Cancer Institute of New Jersey, New Brunswick), Thomas Buchholz ( M.D. Anderson Cancer Center, Houston) and Beryl McCormick ( Memorial Sloan-Kettering Cancer Center, New York) said that the study “may have a significant impact on the practice of breast radiation.” They recommended: “Most facilities that have the necessary planning equipment and technology available should strive for optimal homogeneity, which can be readily achieved with the techniques described.”

The editorial writers cautioned that the improvement in treatment planning needed for IMRT is not reimbursed by all healthcare insurers in the US, with technical costs for IMRT treatment being about three times those for non-IMRT treatment. They hoped that these economic issues can be resolved “so that clinical applications of this exciting technology can continue to move forward.”

Early Apple & Jobs: I sad too

(Thanks to Jackie Taylor for the pictures, which she took in Palo Alto, outside of Steve Jobs’ home.)

Gish Jen in Saturday’s opinion pages of the NY Times:

IN 1980, Steve Jobs went to a brown-bag lunch at Stanford business school, looking for summer help. Other Apple executives were busy explaining what a personal computer was when he sauntered in; they stopped mid-sentence as, dressed in a vest, jeans and Birkenstock sandals, he settled himself, cross-legged, on top of a desk. He looked as if he were about to hold a yoga class. Then he began to talk, instead, about revolutionizing the world.

Some four or five students heeded his call, including my husband-to-be, David O’Connor. This was less than half the number who signed up to work for Hewlett-Packard, but never mind. That summer job became a full-time job when David graduated, and a kind of dream. Apple, back then, had a hot-air balloon. It had a race car. When the second “Star Wars” movie opened, Apple bought out a theater so the whole company could go. A friend’s father called a job at Apple the worst possible thing that could happen to a young person, as everything that followed was bound to be a disappointment. And perhaps that was true.

But, of course, it was exciting in a way even an onlooking writer could understand — strangely familiar, too, as if it were being run by a cousin. Apple was, for example, antiestablishment, as all writers are. It was anti-DEC and anti-I.B.M, a harborer of an anti-acronym acrimony that writers, naturally, shared. What’s more, Steve Jobs’s perfectionism made perfect sense to people like me: Of course, he sweated every detail; of course he drove others mad. He was a J. D. Salinger who, weirdly, knew computing

For a lot of us who had read Salinger and thought that everything could be rethought, Apple and Jobs were strangely familiar indeed.

The writing says, “Thanks for being the best boss ever.”

“Versed”

There is “versed” in “She is well versed in Roman history.”

And then there’s “Versed,” which a medical friend told me yesterday, is known as the anesthesiologist’s friend.  E.g., suppose someone wakes up during their abdominal surgery.  Not a nice thing.  However,  a quick shot of Versed removes the memory, along with sending them back to sleep. 

I knew of the possibility of Versed through philosophical thought experiments, but I experienced the use of it recently, as reported here

The thought experiment:  How do you know you weren’t awake for the whole awful operation but just paralyzed and then given a drug which removed the memory of it?  It turns out this is technically possible.

Breast Cancer: The TSA does it again

It turns out that there is some metal in “tissue expanders,” which stretch skin so that a woman with a mastectomy can have an inplant for her breast reconstruction.  You don’t really need to know what the TSA can make of this, but here goes anyway:

From the NY Times:

The latest case involves Lori Dorn, a 44-year-old New York woman who learned in March that she had breast cancer. After tests revealed a high genetic risk for cancer, Ms. Dorn underwent a bilateral mastectomy in April as well as a grueling chemotherapy treatment that just ended in September. As part of her breast reconstruction, tissue expanders were implanted to stretch her skin before placement of a permanent breast implant.

But Ms. Dorn says that last week, on her way to San Francisco to visit friends, she was treated with hostility and humiliated after the tissue expanders were detected by a body scanning machine at Kennedy Airport in New York. She said the workers from the Transportation Security Administration would not let her retrieve a medical card explaining the implants, a situation she wrote about on her blog.

I told her that I was not comfortable with having my breasts touched, and that I had a card in my wallet that explains the type of expanders, serial numbers and my doctor’s information and asked to retrieve it. This request was denied. Instead, she called over a female supervisor who told me the exam had to take place. I was again told that I could not retrieve the card and needed to submit to a physical exam in order to be cleared. She then said, “And if we don’t clear you, you don’t fly,” loud enough for other passengers to hear. And they did. And they stared at the bald woman being yelled at by a T.S.A. supervisor.

I have been through emotional and physical hell this past year due to breast cancer…. I understand the need for safety when flying, but there is also a need for those responsible to be compassionate and sensitive to each situation.

Ms. Dorn said she is not opposed to being patted down, but believes she should have been given a chance to explain her medical situation and taken to a private area for the pat-down. She said a private pat-down was never offered.

She also says she still has several painful areas on her chest where her body is still healing. “The areas are very sensitive with or without touch,” she wrote in an e-mail.

If you go to the NY Times article you can read the TSA’s argument that proper procedure was followed.

Also:  it turns out that the TSA has issued an apology.  They also explain they have in place now a training routine that informs agents about dealing with prostheses.  It does, they say, require critical thinking.  Sounds like an opportunity for unemployed philosophers.

Breast Cancer: The dreaded Pink Ribbon October

You may have already seen pink ribbon events planned for October. For a number of women with breast cancer, these events are opportunities for boycotts.
Boycotts? Why in the world? One major worry arises with many charity campaigns: Where is the money really going? But there is also here another concern: a disproportionate amount of the money that is actually spent on the disease goes to awareness, not research for a cure. Treatment for breast cancer is too often brutal and primitive, with about 150,000 women (USA) with the deadly metastatic form, 40,000 of whom will die in 2011. The treatment is slash, burn and poison, and even when that seems to work, the cancer can return 20 or so years later to catch you again, too often at a later and more deadly stage.

Some quotes from a large cancer discussion board:

I got my regular flier from the HEB grocery store today. HEB is a large chain in Texas. The foldover had their bid for your pink money. All coupons will be printed in pink. If you buy two boxes of cookie mix they’ll give you a free reusable grocery bag adorned in pink ribbons…..OR……OR……you can give them $19.97 for a pink fold out chair that says “Fight like a girl” on the back……..or…..or….. you can pay $6 each for some a coffee cup or tumbler with pink ribbons all over it. AAAAAAAAYYYYYYYYYYYYYYYYYYYYYYYIIIIIIIIIIIIIIIIIIIIIIIIIIIIIII. So glad I wasn’t in the store, I hurt to much to shop right now. So I hit their web page and here’s what I told the customer relation form:

Today I received in the mail your regular flier. To my dismay I noted your Pink notice encouraging us to join the fight against Breast Cancer. No where on that flier did it indicate how you support or fund research into curing Breast Cancer. It certainly encourages me to spend money at your store.

I am currently diagnosed with Stage IV Breast Cancer and my awareness has been raised as never before. Are you aware that even Susan B Komen contributes only 19% of their funding to research while spending nearly 40% “awareness” This month myself and many other Stage IV ladies who know we will die of complications from this disease are sick of PINK.  [Stage IV is metastatic; 5-year survival rate is 15%.]

We are asking corporations to stop co-opting this deadly issue to obtain revenue from their customers while doing very little to nothing to fund the research that actually could fight this disease.

Tomorrow I am interviewing with the Austin American Statesman on this issue and I intend to use your ad to point out the frustration we cancer “survivalists” have with the nauseating PINK campaigns throughout the month of October.

Where is your funding going for Breast Cancer????? Is it really helping????

You can do better! You know you can!

——

I got my anti hormonal pill bottle from the pharmacy with a pink lid. The others are white. I think it’s supposed to make me aware of my BC.

[Explanation:  the anti-hormone routine is the mildest of the “poison” part.  A standard one’s side effects include hot flashes, blood clots, strokes and uterine cancer.  A new one is better, but in addition to hot flashes, it can cause chronic joint pain and osteoporosis.  Both types can cause hair thinning.  Each is taken once a day for five years.]

——

I had to stop and chime in as i too dread Pink month..My 1st dx [diagnosis] was in Oct. of 2002 i recall scheduling surgery while this nice well meanin receptionist decided to load me down with all this FREE pink ribbon crap Pens pins etc…I bein naive actually asked whats all the pink ribbons for she said oh sweety its for breast cancer awareness month..My sister was quite horrified as i nicely pushed all this crap back from me and stated breast cancer awareness can kiss my a** as im very aware at this moment.. Thank you very much…since that very day i dread October comin as i know the ribbons will be back everywhere and over the years since i onced looked onto some of it but it seemed most went to pink ribbons or simply people couldnt tell me where it truly went…

—-

I have a relatively popular blog.  In fact, last time I called a company on their pinkwashing, they had to shut down.

I put right in the media section that I don’t support any awareness activities, only research.

Yet, I am being inundated with requests to promote pink products.  Somebody has a butter bell, somebody has a piece of jewely they designed, somebody else has pink Brillo pads.

I’m going to creating a big wall of shame.

I write them all back, saying that it’s disgusting that they are trying to profit off the backs of suffering women and donate money to groups that don’t help with anything that helps the only folks who die of breast cancer – us.

And, that I will certainly mention their product on my blog – in my Hall of Shame. 

That scares some people.  Wait until that blog post comes out.

This is an important topic.  Opposing views are welcome.