Tag Archive for Breast cancer

March awareness of everything but blue

March 4, 2010 cancer, survivorship 6 comments

March is colorectal cancer awareness month. Leading up to each March I go back and forth in forum conversations with people who want this year to be the year the world experiences some sort of magical CRC awareness miracle. While awareness is growing, there is of course no miracle. There are only faces – mine, yours, someone you met at your kid’s school or your neighbor or a relative.

Friday March 5 is ‘Dress in Blue Day’ across the US, when people dress in blue to show their solidarity with CRC advocates in raising awareness. There are a couple of cool videos of me out on the ‘net, dressed in blue and filmed in early 2009, telling my survivor story to Colon Cancer News. And I’ll wear blue again this Friday. Later this month, I’ll participate in C3′s 2010 Call on Congress, meeting with my senators and representative to discuss bills which provide screening for colon and rectal cancers. It’s the first year since diagnosis that I don’t have either scans or surgeries or recovery at this time, the first year I’ve ever gotten the chance to go. I’m excited and a little nervous and I can’t wait.

But today, I saw a message on Twitter about someone sponsoring a giveaway this week to benefit the Komen foundation and breast cancer advocacy. And me, the person who’s always maintained that advocacy and science don’t care what color awareness ribbon you wear, found myself thinking “By the goddess – you’ve already got October! March is colorectal cancer’s month!”

Before the hate mail starts – I’ve got breasts (both of them.) I do regular self-exams and have had mammograms on schedule (more or less) ever since I turned 40 (skipped them while doing active chemo, because they aren’t reliable then.) My paternal aunt and three of my cousins (her daughters) have all dealt personally with breast cancer. My oldest cousin died of recurrent mBC. Her youngest sister, positive for the BRCA genes, had a prophylactic double mastectomy. I get breast cancer awareness, people – I support it and I’ve even donated my writing services to Komen foundation fund-raising efforts.

But I’ve got a thought – maybe radical, but hear me out.

To truly raise awareness, we need to let the individual cancers assigned to months other than October shine. We need to get the pink-wash out of the center spotlight for 11 of the 12 months of the year, so that we can have a shot at raising awareness for the other cancers that kill people – lung cancer, the #1 killer of both men and women in this country; colon, rectal and anal cancers, which are the #2 cancers that kill both men and women, gynecologic cancers, prostate cancer, lymphoma, pancreatic, esophageal cancers.

Each of these cancers needs their time in the spotlight if we are ever going to successfully raise awareness. But to focus on these other cancers, we need to stop the pink madness, the saturation of pink year-round, the promotions from November to May for May’s country-wide Races for the Cure, and then the promotions from June through October for October’s breast cancer awareness events. Is it too much to ask for the center spotlight in the months that aren’t May or October? Is it too much to ask that the promotions designed to raise breast cancer awareness let some of the other cancers have their chance in the spotlight, their awareness months without fighting for air time and ‘net space or having their colors diluted by pink?

Cancer doesn’t care about the color of your awareness ribbon – but people do. And it’s people who need to be made more aware that colorectal cancers, lung cancer, gyn cancers, prostate cancer, pancreatic cancer, brain cancer and other cancers are as much or more likely to be fatal and to affect larger populations than BC.

So, with all due respect – stay out of my blue month, okay? I’ve got some awareness to raise for the cancer that will affect over 150,000 new patients and kill more than 50,000 men and women this year.

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Cancer screening guidelines: What cost prevention?

November 21, 2009 cancer, research, survivorship 3 comments
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.

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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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