Member of WOW and hubby having fun at a Halloween party.
Tuesday, November 13, 2012
Saturday, October 13, 2012
How to talk to someone with cancer
Monday, Dec 12, 2011 05:00 PM PST
How to talk to someone with cancer
As the holidays approach, here's what your friends with cancer need to hear -- and never want you to say
Patient Involvement in Decision-Making
Patient Involvement in Decision-Making: A long way to go
Posted by on October 10th, 2012
This week brings some excellent reading about why and how to educate patients so they can help make better decisions about their own care.
What happens when patients get to read their own medical records? The Oct. 2nd issue of Annals of Internal Medicine published two editorials and results of a quasi-experimental trial of 100 primary care doctors who voluntarily provided 13,500 patient volunteers with access to their doctors’ notes for a year. To read details, read further, but some results in brief :
The OpenNotes study, described in the Oct. 2 2012 Annals of Internal Medicine , is “quasi-experimental” because participants (both patients and primary care doctors) were volunteers who had access to electronic records, and it was done in only 3 geographic areas (Boston, Seattle and Pennsylvania). But it is one of the first carefully reported observations of open-access medical records.
Before the study, doctors who volunteered and those who declined to participate said they worried about disrupted workflow and that the notes would confuse or worry patients, according to a previously published study . In striking contrast, about 99% of patients were eager to get access to their doctors’ visit notes.
After the year-long experiment, the vast majority of patients had read at least one note and about half of those completed a post-survey:
Interestingly, about 60% of patients believed they should be able to add comments to the doctors’ notes, and 99% wanted open notes to continue and no participating doctor decided to stop providing access.
Communicating Medical Evidence to Patients for Better Decision-Making
“Traditionally, the patient’s physician generates the first opinion, with other clinicians offering second opinions. However, an opinion at least as important must also be recognized in this traditional rubric–that of the patient and family,” wrote the authors in summarizing results of an Institute of Medicine (IOM) expert report on how to better communicate medical evidence to both providers and patients.
The report resulted from an IOM initiative to understand Americans’ desire to develop their own informed opinions and be included in decision-making about their own care. They performed a nationally representative poll whose findings included:
A health care system “can deliver truly patient-centered care only when patient preferences—informed by medical evidence and provider expertise—are elicited, integrated, and honored,” the authors wrote.
In an ASCO commentary , Dr. Robert Miller, a “busy clinician in a breast cancer practice at an academic medical center,” shared his honest reactions, including the admission that “…my colleagues and I probably aren’t hitting the mark nearly as often as we would like to give ourselves credit.”
Patient Take-Away
Keep asking questions, seeking the best scientific evidence available, and remind your doctor about your own personal goals—and the need to consider your “opinion” equally as much as opinions from the clinicians on your team. And kudos to the IOM and JAMA for providing free public access to the report and summary (see links below).
Sources: Oct. 2 2012 Annals of Intern Med; Sept. 2012 Institute of Internal Medicine Discussion Paper , author summary published online Sept. 25 2012, JAMA; and Sept 30, 2012 ASCO Connection .
- patients loved being able to read their visit report, and 75% said they were more likely to take medicines as directed;
- doctors didn’t see increased patient anxiety, visits, or time demands.
- 8 in 10 patients want their provider to listen, but only 6 in 10 say it happens;
- 8 in 10 want to hear the full truth about their diagnosis;
- fewer than half of patients say their provider asks about their goals and concerns.
The OpenNotes study, described in the Oct. 2 2012 Annals of Internal Medicine , is “quasi-experimental” because participants (both patients and primary care doctors) were volunteers who had access to electronic records, and it was done in only 3 geographic areas (Boston, Seattle and Pennsylvania). But it is one of the first carefully reported observations of open-access medical records.
Before the study, doctors who volunteered and those who declined to participate said they worried about disrupted workflow and that the notes would confuse or worry patients, according to a previously published study . In striking contrast, about 99% of patients were eager to get access to their doctors’ visit notes.
After the year-long experiment, the vast majority of patients had read at least one note and about half of those completed a post-survey:
- 77-87% of patients said open noted helped them feel more in control of their care;
- 60-78% of those taking medicines reported they followed medication directions better;
- only 1-8% reported confusion, worry or offense; and
- surprisingly, 20-42% reported sharing notes with family or friends.
Interestingly, about 60% of patients believed they should be able to add comments to the doctors’ notes, and 99% wanted open notes to continue and no participating doctor decided to stop providing access.
Communicating Medical Evidence to Patients for Better Decision-Making
“Traditionally, the patient’s physician generates the first opinion, with other clinicians offering second opinions. However, an opinion at least as important must also be recognized in this traditional rubric–that of the patient and family,” wrote the authors in summarizing results of an Institute of Medicine (IOM) expert report on how to better communicate medical evidence to both providers and patients.
The report resulted from an IOM initiative to understand Americans’ desire to develop their own informed opinions and be included in decision-making about their own care. They performed a nationally representative poll whose findings included:
- 9 in 10 patients want their clinician to offer choices for tests and treatments—and not just the option that their physician recommends;
- nearly half strongly wanted to discuss the option of doing nothing; and
- 97% want coordinated care, but only 54% felt they got it.
A health care system “can deliver truly patient-centered care only when patient preferences—informed by medical evidence and provider expertise—are elicited, integrated, and honored,” the authors wrote.
In an ASCO commentary , Dr. Robert Miller, a “busy clinician in a breast cancer practice at an academic medical center,” shared his honest reactions, including the admission that “…my colleagues and I probably aren’t hitting the mark nearly as often as we would like to give ourselves credit.”
Patient Take-Away
Keep asking questions, seeking the best scientific evidence available, and remind your doctor about your own personal goals—and the need to consider your “opinion” equally as much as opinions from the clinicians on your team. And kudos to the IOM and JAMA for providing free public access to the report and summary (see links below).
Sources: Oct. 2 2012 Annals of Intern Med; Sept. 2012 Institute of Internal Medicine Discussion Paper , author summary published online Sept. 25 2012, JAMA; and Sept 30, 2012 ASCO Connection .
Wednesday, October 3, 2012
The Rheindlander
WOW members and their families enjoyed a wonderful evening at the Rheindlander restaurant. We had good food, wonderful entertainment and splendid conversations!
Friday, September 28, 2012
Nature.com
I found a website that posts journals and research about cancer here is the link: it is worth checking out: http://www.nature.com/cancer/index.html
Tuesday, September 18, 2012
Silpada Fundraiser
Tuesday, September 11, 2012
Eat your Veggies!
It’s no secret that a diet full of fruits and veggies can help you stay in top shape, but did you know it's one of the best ways to keep your colon healthy and other organs? September is Fruit and Veggies – More Matters Month. Take this opportunity to learn how easy it is to increase your intake of these good-for-you foods. Visit fruitsandveggiesmorematters.org for recipes and shopping lists.
Thursday, September 6, 2012
Chemocare.com
I just discovered a great website called Chemocare.com. It is presented by Scott Hamilton. It has great information about all aspects of chemotherapy. Check it out!
Monday, September 3, 2012
Silpada Fundraising Party for WOW
| |||||||||||||||||
 | |||||||||||||||||
Sunday, August 26, 2012
WOW Fundraiser Potluck
Sunday, August 19, 2012
Trip to Bend
When we went to Bend we visited with two artsits that make beautiful pictures with the art of quilting, very beautiful and interesting to listen to them talk about thier process.
Thursday, August 16, 2012
Saturday, August 4, 2012
We flew to Bend yesterday and had a fabulous time. The flight was amazing and was donated to our group, we were given a delicious BBQ lunch, then went to visit a quilting shop with beautiful art made by quilting. I sat in the hot tub when we got back and then we had to go home--by airplane!! Thanks to WOW for making these outing possible!
Friday, August 3, 2012
Here is a great article from Dr. Oz about early screenings and the rates of cancer falling:
website: http://www.realage.com/blogs/doctor-oz-roizen/regular-cancer-screenings-improve-awareness-and-statistics?click=main_sr
website: http://www.realage.com/blogs/doctor-oz-roizen/regular-cancer-screenings-improve-awareness-and-statistics?click=main_sr
Regular Cancer Screenings Improve Awareness and Statistics
May 8, 2011 12:00 AM by Mehmet C. Oz, MD, and Michael F. Roizen, MD
Ever been scanned, screened, poked, or prodded in your own war against cancer? If the answer is yes, here's a fact worth celebrating: You've earned a place in medical history. Turns out that more screenings (like yours) are one reason overall cancer rates are dropping. That's the really good news in the latest 15-year cancer report.
Death rates are down for cancers of the breast, cervix, colon, lungs, and prostate. And overall there are fewer new cancers a year. Healthy living and better treatments explain some of the drop, but the courage to say yes to a cancer screening is also a big factor.
Yes, courage. Both of us have had enough colonoscopies, skin checks, and up-close-and-personal prostate exams to know the emotional landscape of a cancer screening. First, you've gotta brave all the "what if" worries and the "doc's going to look THERE" jitters. Then comes the "when will I get the results" anxiety. But finally you arrive at "whew, I'm glad I did it." So are we.
Cancer screenings save lives, including ours. We've both had precancerous polyps removed during colonoscopies. Trouble is, some headlines have made it tempting to skip screenings. Maybe you've heard about new research questioning PSA checks, the blood test that reveals prostate cancer risk. (Are you at risk for prostate cancer? Take this quiz to find out.) Or about a study suggesting that many older men are getting PSA checks they don't need. And we bet you weren't surprised when a new survey announced that 30% of women are confused about new mammogram rules.
Most of these reports are fine-tuning; don't let 'em mislead you. While experts frequently weigh how-early-and-how-often details about these tests, the fundamental things still apply: If you've been getting checked, stick with it. If you've been hemming and hawing (millions do) and letting each new headline justify it, give yourself a kick in the pants and make that appointment. You (and the people you love) want to be part of the lifesaving good news about cancer, not wind up saying, "If only." Here's the scoop on four vital screenings:
PSA tests. About half of men 50 and older don't get PSA tests or digital rectal exams (which check for prostate enlargement). Easy excuse: PSA tests aren't perfect. Rising levels may or may not foretell trouble. They could indicate an aggressive cancer, a no-problem slow-grower, or a simple benign condition. The YOU view: You need an annual PSA check, period. The only question is when. Start by 45 if you're African-American or have a family history; earlier if there's a strong family history. Otherwise, begin at 50. Excuse buster: Combining a digital rectal exam with a PSA test catches more cancers than either test alone. So don't skip that rubber-glove check. (Got more questions about protecting yourself from prostate cancer? Here are the answers.)
Mammograms. Skip 'em? No way. More than 200,000 women in North America develop breast cancer each year. Yet half of women in their 40s put off this breast check, and nearly 40% of women over 50 do. Easy excuse: Conflicting advice. The American Cancer Society recommends breast scans every year beginning at 40. New U.S. government guidelines recommend mammograms every 2 years between ages 50 and 74 for women at average risk. The YOU view: Work with your doc to decide when and how often is best for you, based on personal risk. Excuse buster: Sign up for automatic phone or e-mail reminders from your doctor . . . a little nudging works wonders. (See what else you need to know about breast cancer prevention.)
Colon cancer checks. Because colonoscopies and a few other colon exams spot precancers, this test prevents cancer, saving up to 11,700 lives a year. But just half of the people who should get 'em do, which is one reason 50,000 people a year still die from this preventable cancer. Easy excuse: I don't want anyone looking there. The YOU view: Yes you do. Start at age 50. Make that 45 if you're African-American, and younger if there's a family or personal history. Excuse buster: Odds are you'll only need to do it every 10 years. Even the most squeamish can manage that. (Here's a 60-second habit your colon will love.)
Skin cancer exams. Melanoma, the deadliest type, is one cancer that's going up while others are going down. Easy excuse: Not wanting to get naked with your doc. The YOU view: Blushing isn't fatal. Melanoma is. Get checked if you are over 30, spot a weird-looking mole, have ever had a serious sunburn or any skin cancer, or have a family history of melanoma. Excuse-buster: Catching it early practically guarantees a cure. Take a shower, put on extra deodorant and your best underwear, then grin and bare it. You'll be glad you did. (Do you know the telltale signs of skin cancer? Here's what to look out for.)
Thursday, June 28, 2012
Monday, June 11, 2012
I just found an interesting website called Living Well With Cancer: http://livingwellwithcancer.com/index.html
It has some basic information about cancer, side efffects, etc. But it also has a health journal you can download, a coloring book for children with cancer and a wellness packet you can order. I think this website is worth a look.
It has some basic information about cancer, side efffects, etc. But it also has a health journal you can download, a coloring book for children with cancer and a wellness packet you can order. I think this website is worth a look.
Thursday, June 7, 2012
Day in Seattle
Our last WOW trip was a day in Seattle. We took AmTrak and had a fabulous lunch at Elliot's and then spent time at Pikes Market. We had a great day.
Saturday, May 12, 2012
Motorcycle Rides
Friday, May 4, 2012
Thursday, May 3, 2012
Womens Health Magazine:
11/1/11 http://www.womenshealthmag.com/health/helping-a-friend-with-cancer?page=1.
How to Help a Friend with Cancer
Four ways to help a friend with cancer treatments -- even if it scares the crap around you
Kelly Corrigan
Play Godfather.
Back in the '70s, Marlon Brando delivered the line "I'm going to make him an offer he can't refuse," which is now the motto of all self-respecting mobsters and salesmen -- and is also a good rule of thumb for the friend of the breast cancer patient.
Back in the '70s, Marlon Brando delivered the line "I'm going to make him an offer he can't refuse," which is now the motto of all self-respecting mobsters and salesmen -- and is also a good rule of thumb for the friend of the breast cancer patient.
An example of an offer that can't be refused (which is the opposite of saying "Please let me know if there's something I can do") was when my friend Katy sneaked over the week before Halloween to decorate and brought a jack-o'-lantern, a couple bags of Snickers, even fuzzy fake bats. If Katy had called to ask if I needed anything, I probably wouldn't have asked her to carve a pumpkin for me and stretch cobwebs on the bushes. But when what you need is a normal life, it's hard to put it into words. Which is why I loved Katy's gesture -- for the simple reason that it meant my kids didn't have to have a mom who was sick and miss out on Halloween too.
Add life.
Remember in E.T. when the potted flowers turn brown and die? Cell warfare doesn't leave much time for chores like scrubbing the bathtub or weeding. So where my flower beds used to sing out to me about the exuberance of life, during my treatment they became an unavoidable symbol of decay.
What can I say? Cancer turns everyday things into existential symbols. Dirty laundry, dust bunnies, and empty refrigerators quickly become images of disorder and loss of control. So snip off spent blossoms, water her plants. Drop a bag of groceries on her front porch. If you can swing it cash-wise, send over a housecleaner -- preferably on a chemo day so she has no choice but to accept.
Say anything.
If you're still hesitant to reach out, remember: Simple, even cliche, is totally fine. "I'm thinking of you" never gets old. "That cancer doesn't have a chance against you" is empowering. "I'm rooting for you" feels good.
Some of the most fortifying messages were from friends I hadn't seen in forever or people I'd recently met. And I particularly appreciated the cards I got once treatment was well under way and the game started to drag a bit. It took me the better part of a year to get rid of that tumor, and every time I looked up in the stands, even in months 7 and 8, there they were: a handful of devoted fans, on their feet, who weren't leaving until the ref lifted my arm in victory.
Whatever you do, don't let the idea of perfection stop you. Sure, there's a card out there that's just right, but if you can't find it, or you lose it, an e-mail works too. And I promise you, generic vanilla wafers, given with love, taste just like the real thing.
Add life.
Remember in E.T. when the potted flowers turn brown and die? Cell warfare doesn't leave much time for chores like scrubbing the bathtub or weeding. So where my flower beds used to sing out to me about the exuberance of life, during my treatment they became an unavoidable symbol of decay.
What can I say? Cancer turns everyday things into existential symbols. Dirty laundry, dust bunnies, and empty refrigerators quickly become images of disorder and loss of control. So snip off spent blossoms, water her plants. Drop a bag of groceries on her front porch. If you can swing it cash-wise, send over a housecleaner -- preferably on a chemo day so she has no choice but to accept.
Say anything.
If you're still hesitant to reach out, remember: Simple, even cliche, is totally fine. "I'm thinking of you" never gets old. "That cancer doesn't have a chance against you" is empowering. "I'm rooting for you" feels good.
Some of the most fortifying messages were from friends I hadn't seen in forever or people I'd recently met. And I particularly appreciated the cards I got once treatment was well under way and the game started to drag a bit. It took me the better part of a year to get rid of that tumor, and every time I looked up in the stands, even in months 7 and 8, there they were: a handful of devoted fans, on their feet, who weren't leaving until the ref lifted my arm in victory.
Whatever you do, don't let the idea of perfection stop you. Sure, there's a card out there that's just right, but if you can't find it, or you lose it, an e-mail works too. And I promise you, generic vanilla wafers, given with love, taste just like the real thing.
Avoid comparisons.
You know, like: "My friend's neighbor's sister had breast cancer 5 years ago and now she kayaks to work and competes in kickboxing!" Every case has elements that make chemo more or less effective, that make surgery more or less imperative, that make survival more or less probable.
You know, like: "My friend's neighbor's sister had breast cancer 5 years ago and now she kayaks to work and competes in kickboxing!" Every case has elements that make chemo more or less effective, that make surgery more or less imperative, that make survival more or less probable.
Wednesday, May 2, 2012
Here is a great idea and reminder from a member of our group, Carolyn.
Regarding Thyroid Cancer and prevention
"On Wednesday, Dr. Oz had a show on the fastest growing cancer in
women, thyroid cancer. It was a very interesting program and he mentioned
that the increase could possibly be related to the use of dental x-rays and
mammograms. He demonstrated that on the apron the dentist puts on you for
your dental x-rays there is a little flap that can be lifted up and wrapped
around your neck. Many dentists don't bother to use it. Also, there is
something called a "thyroid guard" for use during mammograms. By
coincidence, I had my yearly mammogram yesterday. I felt a little silly, but
I asked about the guard and sure enough, the technician had one in a drawer.
asked why it wasn't routinely used. Answer: "I don't know. You have to
ask for it." Well, if I hadn't seen the show, how would I have known to ask?
We need to pass this on to our daughters, nieces, mothers and all our female
friends and husbands tell your wives !! I just did, now you send it on to
your list. Someone was nice enough to forward this to me. I hope you pass
this on to your friends and family."
Regarding Thyroid Cancer and prevention
"On Wednesday, Dr. Oz had a show on the fastest growing cancer in
women, thyroid cancer. It was a very interesting program and he mentioned
that the increase could possibly be related to the use of dental x-rays and
mammograms. He demonstrated that on the apron the dentist puts on you for
your dental x-rays there is a little flap that can be lifted up and wrapped
around your neck. Many dentists don't bother to use it. Also, there is
something called a "thyroid guard" for use during mammograms. By
coincidence, I had my yearly mammogram yesterday. I felt a little silly, but
I asked about the guard and sure enough, the technician had one in a drawer.
asked why it wasn't routinely used. Answer: "I don't know. You have to
ask for it." Well, if I hadn't seen the show, how would I have known to ask?
We need to pass this on to our daughters, nieces, mothers and all our female
friends and husbands tell your wives !! I just did, now you send it on to
your list. Someone was nice enough to forward this to me. I hope you pass
this on to your friends and family."
Tuesday, May 1, 2012
Saturday, April 7, 2012
Women of Wonder Rummage Sale
What: Women of Wonder Rummage Sale
When: April 20th and 21st
Time: 10:00 - 3:00
Where: University Park United Methodist Church
Address: 4775 N. Lombard, Portland, 97203--on the corner of Lombard and Fisk
When: April 20th and 21st
Time: 10:00 - 3:00
Where: University Park United Methodist Church
Address: 4775 N. Lombard, Portland, 97203--on the corner of Lombard and Fisk
Subscribe to:
Comments (Atom)