Please respond to cancer coping survey!!

If you currently have breast cancer, or if you had it in the past, a student at USC would love to have you respond to an online survey regarding your experiences and coping style. This student is a senior conducting an honors thesis, and in the future she hopes to become a medical oncologist. Though she has already done research in a pathology lab on HER-2 treatments, this project is for her sociology major (she also double-majors in biology).

Please help this student and science. Her study is at https://usccollege.qualtrics.com/SE/?SID=SV_72i5E5bhK3Fgdx2

Thanks!

I'm done with Komen

No more Komen walks, Komen donations, or Komen-related advocacy for me.

You may love or hate Planned Parenthood, but we can all agree that breast cancer screening and services are good, right? That's the PP program whose Komen funding was halted.

Ideology doesn't help women with breast cancer. Science, research, screening, treatment, and funding help women with breast cancer. And there are lots of other advocacy groups that I can support instead.



http://www.salon.com/2012/02/01/komen_for_the_cure_sells_out_women_again/


http://www.nytimes.com/2012/02/01/us/cancer-group-halts-financing-to-planned-parenthood.html?hpw

Blaming Big Medicine

Cancer is a frustrating, awful experience. In a world in which we all strive to be safe (airbags? antilock brakes? deadbolt locks?) and in control (calendars, schedules, savings accounts), cancer shows up and strips us bare. There will be no certainty, it says. You will not be in charge of this process. The course of the disease cannot be predicted--it's impossible even to say that one person's response to Taxol will be the same as another's. My aunt was diagnosed with multiple myeloma and given less than two years to live; thirteen years later, she died having outlasted every treatment the medical team could devise.

So perhaps it's no wonder that so many people seem to channel their fears and frustrations into fury--at the doctors, the drug companies, and the researchers who are trying frantically to come up with new and better weapons in the fight against cancer. A couple of weeks ago, I noted with interest the New York Times story about lymph node treatment. In short, researchers have found that about 20% of women with breast cancer--in particular, those at stage T1 or T2, with evidence of metastasis to the nodes but not palpable enlargements, and whose treatment includes lumpectomy with radiation and possibly chemotherapy--do not need to have further surgery to remove lymph nodes. This lymph node surgery is invasive and risky--my anecdotal impression is that many women who have undergone the extensive surgery end up with complications such as lymphedema. I was lucky that my cancer had not spread to my lymph nodes, but if it had, it would be a huge relief to know that my survival and risk of recurrence would not depend on having my armpit scraped clean.

So, an informative article about an interesting new development. But the comments to the article really drew my eye. I found them--let's say, less than rational. I'd like to highlight some of them here, with my responses.

hey geniuses, what about the other 80%? and what does that tell you? you can make statistics say whatever the hell you want them to.

 Well, the other 80% don't get the luxury of skipping lymph node surgery. But that does not make the findings suspect, nor does it indicate "lying with statistics." Breast cancer research is moving in the direction of more individualized treatment--approaches customized to the individual person and her disease profile. So, it's not a failure to find a treatment applicable to 20%. It's progress for 1/5 of all patients. And we have to keep working for the rest.

I wish to hell medicine would make up its freakin' mind about all this. My theory is no one knows anything about anything! It's all guess work.

Not necessarily. Science moves forward, but in small steps. Plus, studies can conflict. Scientists look at all of the existing knowledge, and weigh study results against the real risks and opportunities for patients, and all of this informs their recommendations. Changing recommendations reflects progress, not guesswork.

And, finally--

the other 80% end up like my mother in law: dead within five years of a metastatic diagnosis because nodes were not removed and tested when the inital [sic] tumor removal occured.

First of all, this is very sad and my heart goes out to the commenter and her mother-in-law. At the same time, the comment implies (well, states flat out) that the death occurred because nodes were not removed or tested. Cancer is a complex, nasty, and often unpredictable disease. Many women whose nodes are removed, tested, or treated still die, tragically. A cancer death cannot be reduced to this one variable. It's tempting to look back at what wasn't done, what might have been--but even hindsight can't tell us how to save someone. 

In short: faced with the dangers and uncertainties of cancer, it's natural to look around for someone to blame, and for a tangible target for our anger. But lashing out at the research studies and scientists on whom we rely for better treatments and longer lives--that seems misguided. Let's all be mad as hell at cancer. But let's support cancer research, be intelligent consumers of research, and figure out how to make the research help us live longer.

What's really important at Christmastime

This is so beautifully said. It's a short piece by a Salon writer whose mother has terminal lung cancer, talking about the nature of love (versus commerce) and how Christmas brings out the sweet and the sorrowful. Brought tears to my eyes, and a profound recognition of truth.

Choosing to end treatment

I could not agree more with this story at CNN. I've been sad to hear about Elizabeth Edwards' death, but I am happy that she met it on her own terms.

Fruits & veggies: No good?

This new study was highlighted in yesterday's LA Times. Apparently a review of extant research (NOT a meta-analysis--an important distinction) has found little to no effect of the kind of high-vegetable-content, low-meat-content diet that I and many other cancer survivors try to follow. In particular, the article says that the low-fat, high-fiber, high-veggie diet may not do much good.

Although I find this disappointing and a little discouraging, it probably won't dissuade me from seeing the low-fat, high-fiber, high-veggie diet as ideal for preventing recurrence. a) It tends to keep weight lower, and weight is a demonstrated risk factor; b) It tends to emphasize foods closer to nature and thus less processed and with fewer chemical additives. Though we don't yet know the role of such chemicals in cancer risk, it seems like avoiding them may lessen the chance of some kind of harmful exposure; c) Even without supporting data, the logic behind the diet makes sense to me, and the corollary benefits to cardiovascular function and organ health make me feel like it could increase overall health and thus leave me less vulnerable to cancer risk. Ultimately, it seems unlikely to cause HARM, so why not keep it up? (Of course, I write this after having guacamole, tamales, and refried beans for dinner--so maybe it's not "keep it up" so much as "start it up again"...!)

Awareness is great; how about some progress?

The LA Times today has a nice piece addressing women's fear of developing breast cancer, the advances in treatment that have occurred over the past 30 years, and the distance we still have to go.

Body of Knowledge Full-Frontal Assault - LA Times Magazine

What to do when diagnosed

No time for me to comment, but I just re-found a very useful CNN article on what to do when you're diagnosed with cancer. Brief and to the point.

The new dangers of fructose

Yesterday, I read an article on Reuters about a study showing that some cancers (particularly pancreatic) "feed" on fructose, growing faster when given more of it. Because eating less sugar is recommended for cancer (and cancer recurrence) prevention, this was not too surprising. However, the article distinguished between fructose--problematic--and glucose--less so. Of course, high-fructose corn syrup was mentioned: because it so permeates industrial food production, could it be accelerating cancers?

Today, salon.com has a terrific piece examining the issue. My favorite part: the Marion Nestle quote comparing sugar content in various sweeteners:

[Both corn syrup and] table sugar ... are about 50% fructose and are about equal in their effects. So is honey. Agave has even more.

Again, it's all about perspective. Let's eat less sugar--we'll be healthier. But I'm seeing several media outlets jumping on the "corn syrup is evil" bandwagon, and really--not helpful, guys.

_________ gave me cancer

I've heard plenty of theories--many quite nutty--about what causes breast cancer. Obviously, we don't really know. For some reason, the incidence is much higher among women in my demographic--upper middle class, no pregnancies, history of birth control use, and whatever other lurking dangers are created by a privileged, professional lifestyle. I may not have lived in Marin County, but I seem like a model Marin case.

I've also heard many other possible causes (see a list here), including:

• underwire bras
• antiperspirants
• heating food in plastic containers
• plastic containers in general (BPAs)
• drinking too much alcohol
• not drinking enough alcohol
• working the night shift
• and now--sleeping on a mattress.

That's right; sleeping on a mattress. Sigh.

I actually try not to heat food in plastic containers anymore, or to use BPA-carrying plastics. I avoid parabens (though I just discovered that they're in my new Philosophy moisturizer, so once that runs out, no more Philosophy). I try to drink no more than three drinks a week. I work on getting enough cinnamon, turmeric, green tea, vitamin D, and omega 3s. I even just completed an 11-day "cleanse" to try to detoxify my system (Isagenix, if you want to know).

Really, we don't know where the f&#% this disease comes from, but we clearly live in a world swimming in toxins and contaminants, and I'm all for trying to find new ways to improve prevention and resistance. But COME ON, PEOPLE. Enough with the snake oil!

Or am I just one of the lucky ones, because my cancer was on the right?

New research on chemicals and breast cancer

It was sure a sexy headline: "Cleaning products linked to breast cancer." Imagine all the late-night jokes about that one ("Honey, I won't be cleaning anymore!")--well, maybe if late-night comics were women.

When I read the article, I was dumbfounded. The research sounded like a joke. It's a self-report survey in which women say how much chemical exposure they've had, and that is compared between women with and without a history of breast cancer. It sounded extremely weak.

But with the Shirley Sherrod debacle fresh in mind, I decided not to stop there. I clicked the link ("suggests") to get to the Science Daily description of the study, somewhat more in depth. It said that the study comes from an open-access journal called Environmental Health. Well, that's not great because it suggests that the study wasn't strong enough to be published in a regular, peer-reviewed, restricted access journal.

But OK. I then went to the study itself. Here it is. And it's not really too bad, as preliminary evidence goes. I won't be throwing out all the cleaning products in the house, but this is enough of a signal that other researchers should now do some deeper digging.

What I really want to say, though, is this: It is so important to evaluate the quality of the science behind any of these findings. There is breast cancer news every single day: eat this, don't eat that, Avastin doesn't work, don't clean your house. (OK, that last is a stretch.) Some of these findings are coming out of really important and rigorous research. Some are absolutely bogus and should not be listened to. And then there's the substantial middle, in which this study resides, where there are suggestive findings but so much potential for fear-mongering or knee-jerk reactions. Take a deep breath and read the study. Check it out. Don't take the news article's word for it.

Insomnia

The Huffington Post--whose living section I often find suspect, filled as it is with pretty quack-y medical articles (let me just say, I think Suzanne Somers' approach to cancer prevention is a giant duck)--has a GOOD article today on cancer and insomnia.

When I was going through chemo, my acupuncturist would ask me, at every appointment, how I was sleeping. Disrupted sleep is a common correlate of chemo, at least in part due to hormonal disruptions mimicking menopause (or, inducing menopause in many cases).

Further, I've found that my sleep post-cancer-treatment is much less reliable than it was before. I have times when it's hard to fall asleep or hard to stay asleep. The study described in the article seems like a valuable step in helping deal with this problem.

Telling someone they have the big C

Today's LA Times has an interesting blog post giving results of a survey on how people were told that they had cancer. The phone-message-on-Valentines-Day example seems, um, not great.

My own experience was probably on the "most positive" end of the continuum. I went in for a formal follow-up appointment and got the news from the surgeon, who spent roughly an hour with me (and Noah), drawing pictures and discussing the treatment and answering all the questions that could surface from the depths of our confused, overwhelmed brains. He (the surgeon) also emphasized the word "cure" repeatedly, and his tone was so confident and positive that I never felt--at that time--like "I might die," just like (as I told Noah) "my life [was] going to SUCK for the next year."

The only bad part of the news-delivery process, for me, was that the surgeon and the rest of the oncology staff were angry with my primary-care physician for not taking responsibility for that process himself. And they let their anger be known, just a bit. So I knew that there was some buck-passing, and maybe I could have done without that. Overall, though, I'd give Norris Cancer Center an A in this area.

How doctors deliver the news: It's cancer

Unfinished business: How one man keeps his late wife’s memory alive - thestar.com

What a touching story. For me, it's not so much that this guy is trying to keep his wife's memory alive, but rather the fact that her life (and death) inspired him to do so much with his own. He may be living in tribute to her, but he is emphatically living--what a wonderful gift she left him! The list seems pretty fun and interesting, too. I wonder what PhD he'll get.

Unfinished business: How one man keeps his late wife’s memory alive - thestar.com

What would I do?

Another great cancer-oriented article from the NY Times today. This one tells the story of a woman who was diagnosed with breast cancer at 31, was successfully treated, completed her medical degree and entered the field of palliative care, and then had a recurrence and severe metastasis of her cancer. She found herself resisting the same palliative approach she'd been advocating, and fought hard--there's no other phrase for it--until it killed her at 41. Ten years, end to end. She was not ready to give up and not ready to die--at 41, who would be? At 50 or 60, who is, really? In any case, it's yet another poignant and thoughtful piece from the Times, which seems to have a whole "cancer beat" alongside politics and world affairs.

Things are good with me. I passed the 4-year mark with clear bloodwork, mammogram, and physical exam. I have fully regained my strength and my life, and to a large extent I have recovered a sense of confidence that my life will continue for the foreseeable future--or, at least, not be cut short by cancer. Who knows, but the gnawing fear subsides a bit, and it becomes easier to live both for today and toward a future, and that's a nice thing. Of course, as the article illustrates, neither the future nor one's attitude toward it is very predictable.