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Cancer screening guidelines: What cost prevention? November 21, 2009

Posted by PAS in cancer, research, survivorship.
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337/365: The Big Money

Image by DavidDMuir via Flickr

The cancer survivors world has been twisting around on itself this week, as new screening recommendations were released for breast cancer (no need for annual mammograms until age 50, breast self-exams ineffective, screenings from age 40-49 yield too many false positives) and cervical cancer (moving Pap smears out to every two years, or every three years, depending on health and history.)

I’m not sure how I feel about the science behind these recommendations. I’m all about science – but I’m also all about prevention in health care, and body-awareness as a patient. I have a tough time wrapping my head around the idea that in the two areas where we’ve made the most progress at getting the public to embrace self-exams and insurance companies to embrace preventative screenings, none of that prevention has done enough good to merit continuing the practices. I’m from the era of ‘Our Bodies, Our Selves’ and I’ve done breast self-exams (BSEs) for 35+ years. Now I’m hearing that none of that was (necessarily) worth my time. Huh?

Recently, in her blog Everything Changes, Kairol Rosenthal asked, “Do you think we can move beyond anecdotal stories about young women with breast cancer and start investing in evidence based studies about how to reduce our mortality rates?

I think we can – I think we must. And this is how I responded.

———

Yes – and this needs to happen not just for breast cancer, or cervical cancer (which took a screening recommendation hit today, too) but for ALL cancers.

We not only CAN move research beyond anecdotal stories about detection and diagnosis – we MUST move to accomplish that research.

I agree that decisions are based on (mostly) facts and science and research. And I submit, with all due respect to the learned members of the USPSTF, that it’s entirely possible that while their research is adequate on its face for the question(s) they considered, they asked the WRONG questions.

The questions are not only whether early screenings prevent death, or even whether they cause harm. Those are important questions, but not the only questions that need to be asked. Researchers need to ask whether early screening actually discovers disease in a lower, more easily treatable stage than screenings at a later age. They need to ask if that number is rising (in several cancers, it is.) They need to ask whether early, non-invasive screenings like BSE, mammograms, and other self-exams, can contribute to a heightened body-awareness that helps people become better and more active, informed participants in their health care. They need to ask if it’s more cost-effective to provide preventative care to the largest population possible or more cost-effective to stick with the current model (spending hundreds of thousands of dollars to fight fires that could have been prevented at lower cost.)

We are mired deep in a US healthcare system which spends exponentially more money on treatments (putting out fires) than it spends on preventing those fires in the first place, than it spends on making routine well-person checks available and affordable. The causes of readily available screening and early detection for any cancer are very close to my heart – as well as other areas of my anatomy.

I was considered high-risk for breast cancer (paternal aunt and 3 of her 4 daughters dx’d with BC before age 40; one cousin dead of recurrent BC by age 50; one of her 4 daughters a prophylactic mastectomy patient.) I was considered high-risk for cervical cancer after an HPV exposure in my late 30s. I was aggressively screened for both BC and cervical cancer – who knew the cancer card I’d draw would be stage IV rectal cancer diagnosis at age 48, two years before the recommended screening age and with a less than 15% 5-yr survival rate?

Preventable, treatable and beatable in the context of five chemo regimens, three surgeries and 5+ years fighting for my life is relevant only in the context of what SHOULD have been done! CRC ain’t so treatable, preventable or beatable when your doc finds an 80% tumor load in your liver.

I’m an anecdote, all right, but I’m an anecdote who’s paid attention to all of the facts and figures. My treatments and surgeries to date have cost over $300K, compared to what it would have cost to give me annual screening colonoscopies from age 40 – $8K, at today’s prices. That’s pretty simple math to do, and to factor by the number of late-stage (III, IV) patients diagnosed with CRC this year. As with breast cancer, THAT is the math that needs to be done. We need to ask THOSE questions about early screening.

And until we have the answers to those un-asked questions about the success of prevention, then I’d much rather deal with a false positive and a biopsy that turns out to be negative. It would be infinitely preferable to the treatment required after late detection of an advanced cancer.

Been there, done that, have the ostomy supplies to prove it. 😉

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The new science is interesting, and I am slowly reading through it. But I think that I’ll be continuing my current screening procedures, based on my personal experience, and I’ll continue to advocate for early detection, prevention and body self-awareness.

And if you’re not reading “Everything Changes,” do check out Kairol’s blog.

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Every step makes a difference! November 1, 2009

Posted by PAS in cancer, research, survivorship, the 'net.
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A few weeks ago, in an effort to improve my blogs I joined http://www.problogger.com. I know that the tips and tricks I’ve picked up so far are improving my blogging – who knows, maybe someday I’ll even move my blog(s) to their own domains!

One of the things I really enjoy about the blogging community is that I’m always finding opportunities where my blogging can make a difference. I’ve blogged here to support Yoga Bear and tweeted to support Cancer and Careers – two organizations who give direct, real-time support to cancer survivors, support which makes their days easier. The most recent opportunity was a call for bloggers to help compile an ebook designed to benefit the Susan G. Komen Foundation and raise funds and awareness for breast cancer research and support.

Yeah – I know. I don’t have breast cancer; I have rectal cancer…and we have our own awareness and funding issues. But at the end of the day, I’m a woman. I have breasts. I have cousins and an aunt who’ve had breast cancer, and one of my cousins died of recurrent BC. I work in pre-clinical research, helping to make cancer drugs – and in the vivarium, drugs don’t wear single-color awarenss ribbons. Drugs that work on some kinds of cancer often become candidates for treatment regimens in other types – and every step forward makes a difference for all types of cancers.

I submitted one of my favorite posts, “The (reluctant) cancer warrior,” — and I’m proud to announce that it was accepted and appears in the Blog4Cause ebook produced by Lance Ekum (@lance02) and Joanna Sutter (@joannasutter), authors of the Journey of Life and Fitness & Spice blogs, respectively.

Every donation, large and small, to the Komen Foundation from the targeted Blog4Cause page gives the donor a download key to the ebook Ekum and Sutter compiled. Even more important, the ebook puts survivors’ perspectives in the hands of even more people. Through this effort, awareness about and understanding of living with cancer will reach a new audience. I’m very proud to have been accepted in Blog4Cause’s effort – and very happy that by doing something I enjoy, I can do a little good.

Ekum and Sutter’s effort also stirred up some sleeping marketing and PR skills, has me thinking that there’s ebook potential out here to raise year-round awareness about colorectal cancer.

Bloggers and friends – would you be up for a similar effort targeted as a colorectal cancer awareness/fund-raising effort? Take a look at your best posts (or write up a new one) and let me know!

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Three tools make exercise possible for cancer survivors October 18, 2009

Posted by PAS in cancer, research, survivorship, yoga.
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Pilates Girl for PCAGOE

Image by ittybittiesforyou via Flickr

Studies of the benefits of exercise for colorectal cancer survivors all agree on one thing: just do it! Regular exercise during cancer treatments, after surgery and during periods of remission appears to help increase a patient’s sense of well-being, ease side effects and even has been linked to prevention of recurrence.

All good things — but when treatment and surgery knocks your butt firmly onto the couch, how can you possibly follow those recommendations? And how can you avoid feeling guilty on the days when you can’t?

When I was first diagnosed, I was on Folfox + Avastin, a chemo regimen that had me in an infusion chair for two days every other week, followed by sleeping for the better part of 2-3 days as the effects of the infusion wore off. I still worked full-time, on non-infusion days. But when I wasn’t speeding through infusions on decodron and other steroids given to prevent nausea, or working, I was sleeping — especially the weekend following infusions. As I moved from chemo regimen #1 to surgery to chemo #2 to surgery #2 to chemo #3 to radiation + chemo #4 to surgery #3 to chemo #5, the effects of treatment and recovery piled up. Energy during the seven days after an infusion was less than zero. Energy during the off-infusion week was bare minimum, and only if I carefully managed my commitments.

The types of exercise I could do during treatment and can do now during remission are limited by incisions from my xyphoid process to pubic bone and another that cuts under my right rib-cage, by the peristomal hernia on my left side around my colostomy, and by complete lack of energy reserves typical in liver resection patients. Yeah, I know I should exercise — but I am not one for whom exercising helps me push aside fatigue. Far more likely my exhaustion will cause an accident or injury, so I have to be cautious. Safely getting some of that beneficial exercise every day is the perpetual challenge.

Luckily I had three tools at hand that made it possible for me to take advantage of every chance at exercise: television, Google and eBay.

Wait a minute, you’re saying. Those aren’t exercise tools! Ah, but what I discovered in months of being laid up recovering from surgery or flushing chemo out of my body is that there is a wealth of exercise information out in the world aimed at rehabilitation, people with limited movement and people who can’t necessarily do the same kind of cardia and weight lifting that I used to do pre-cancer.

1. Television

I watched my share of QVC, infomercials and late-night TV ads while speeding on decadron during infusions. TV exposed me to variations on pilates, dozens of exercise routines and programs, and some equipment that is easy to maintain and manuever than other machines I’ve used. FitTV and PBS exercise shows let me try-before-buying to find out what type(s) of exercise was comfortable. From those explorations, I moved to:

2. Google

If an exercise program looked like something I could make work from a sitting or laying-down position, I Google’d it. I bookmarked websites, tried out snippets of online routines, checked user reviews. Through all of the advertising venues, I found leads to many exercise resources including:
Sit and Be Fit, the website for the PBS tv show designed to promote healthy aging in seniors with limited mobility
BodyBlade: flexible, weighted bars with exercise DVDs. The shorter, lighter bars are designed for rehabilitation (my physical therapist’s office has an entire wall of BodyBlades in various lengths and weights.)
Pilates (specifically, moving my routine from the Performer machine to an exercise ball, since my Pilates Performer machine is at times too heavy for me to move)
Namaste Yoga, the website for the FitTV program featuring Canadian yoga teacher Kate Potter — who has her own website and a teaching schedule across the country.

3. eBay

Sears isn’t the only place where America shops. Once I’d found the types of exercise DVDs and equipment I wanted to try, I searched eBay. There, I found a second-hand Sport-Blade (similar to the 40″ CXT BodyBlade), complete with DVD and wall chart, for $10. I had taped favorite Namaste episode routines, but an eBay search turned up a full set of six of Potter’s DVDs (two full seasons of the TV series) for $10 plus shipping and handling — less than the cost of one tape from her website. I found a copy of Craig’s Pilates on the Ball in eBay books, in good used condition, for $5 (I picked up an exercise ball at a local Marshalls, but there are exercise balls on eBay, too.) Ultimately, watching Sit and Be Fit episodes on PBS convinced me that I didn’t need to pick up DVDs of that program, but my eBay searches did turn up a second-hand pedal exerciser, a kind of mini-bike I keep under my desk at work. I use it to pedal away stress during long teleconferences and meetings. It cost more in shipping than it cost to buy on eBay; total – $20.

I’ve walked the dogs (mostly) twice every day since diagnosed. But walking my dogs, while it gets me out, isn’t either cardio or balance-reinforcing as much as it’s moving meditation and five minutes morning and evening to put M. through some of her paces. But with the help of television, Google and eBay, I’ve been able to collect the tools to exercise a little bit every day — even when I’m (mostly) flat on my back. Ten minutes of yoga every day, two quarter-mile dog walks, several sets of stairs either at home or at work, a little pedaling during a meeting — I am not running marathons, racing a bike or climbing mountains. But my version of ‘just do(ing) it’ is going to have to do.

Can you exercise while you’re on treatment? What exercise do you choose? How often do you do it?

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