12/7/2009

a not so emotional post... :-)

this morning on the way to they gym i heard the end of this story on NPR.
http://www.npr.org/templates/story/story.php?storyId=120985060

For Black Women, Breast Cancer Strikes Younger

by Brenda Wilson

Many African-American women don't fit the profile of the average American woman who gets breast cancer. For them, putting off the first mammogram until 50 — as recommended by a government task force — could put their life in danger.
"One size doesn't fit all," says Lovell Jones, director of the Center for Research on Minority health at Houston's M.D. Anderson Cancer Center. Jones says the guidelines recently put out by the U.S. Preventive Services Task Force covered a broad segment of American women based on the data available. "Unfortunately," he says, "the data on African-Americans, Hispanics and to some extent Asian-Americans is limited."
So while the recommendations may be appropriate for the general population, he says, it could have a deleterious affect on African-American women who appear to have a higher risk of developing very deadly breast cancers at early in life.
When you look at the death statistics for breast cancer in African-American women and compare them to white women, it's stunning. Beginning in their 20s, into their 50s, black women are twice as likely to die of breast cancer as white women who have breast cancer. In older black women, cases of breast cancer decline, but the high death rates persist.
Overall, breast cancer deaths have been declining for nearly a decade (by 2 percent annually),
[gee, could that be due to the fact that more women are getting screened and the cancer is being detected earlier???] yet deaths of African-American women have been dropping at a much slower pace. In 2009, an estimated 40,170 women will die from breast cancer. Nearly 6,000 will be African-American women. [and most of these women will have been under age 50]
Dr. Vanessa Sheppard, a behavioral scientist at the Lombardi Comprehensive Cancer Center at Georgetown University, has been conducting a study to understand the response of African-American women to treatment for breast cancer, so she's seen this up close.
"We've lost eight African-American women," she says. "That's a pretty high mortality rate in about 200 women."
Personally, Sheppard says, she's lost friends who were 32, 36 and 40 from breast cancer. Studies estimate that 20 to 30 percent of breast cancers in African-American women are triple-negative breast cancers. This means the cancers lack estrogen and progesterone receptors and won't respond to drugs that work by preventing the hormones from reaching the cancer cells. Triple-negative cancers also are HER-2 negative, another hormone, and therefore don't respond to any of the treatments known to block the cancer's growth.
"The breast cancer is more aggressive," says Sheppard, "The tumors are harder to treat. They're larger."
Similar types of aggressive breast cancers have been found in other ethnic groups — including Africans — suggesting perhaps a genetic link. But no one knows exactly why this is happening. And there's probably no one explanation. There are known risk factors for breast cancer and combinations of risk factors — a family history of the disease, age at which menstruation and menopause start. But scientists have found it difficult to come up with a satisfactory model that predicts breast cancer in black women.

Causes Unknown
The deadly breast cancers in black women remind Jones of the higher infant mortality rate in the African-American community, which has yet to be fully explained. Researchers have the same difficulty determining what combination of factors causes low birth weights and infant deaths in African-Americans. For example, the age of child birth with the lowest infant mortality rate in white women is about 30. In black women it's around the ages of 16 to 19. Jones suspects the stress that African-Americans experience in this society is contributing to premature aging. It's not a popular theory, but even after adjustments are made for education, poverty and other factors, infant mortality remains high.
"It could be induced by discrimination or perceived discrimination," says Jones. "It could be due to living in an environment that produces stress." He offers the example of recent stories about the many young kids being killed in Chicago and says. "Well, that adds stress — community stress."

More Routine Screening Could Help
Studies suggest, in addition to higher risks factors, African-American women aren't getting screened for breast cancer as often as white women and when they do it is later in life. Often the mammograms are not routine screening mammograms, but rather they're done because the woman or her doctor felt a mass in a woman's breast. These cases happen all too often, says surgeon Dr. Regina Hampton. She says that vital time has passed by the time they show up in her office with a mammogram in hand.
"Because of their young age, many practitioners don't believe that a young woman can get breast cancer," Hampton says. "These cancers then, once they come to me, are at a later stage. So, we're kind of running behind the 8-ball trying to get the patient treated."
There are also questions about the care that African-American women are receiving, whether they are referred to cancer specialists in a timely way, and understand that they will need therapy after surgery. With all the issues surrounding black women and breast cancer, health professionals argue there should be separate guidelines for African-American women — and say they should get mammograms earlier and more frequently than the task force's recommendation of age 50.
Sheppard even wonders if the old guideline of routine screening every year beginning at age 40 is good enough. "The tumors are growing fast and the intervals that we prescribe may not work," she says. "How can we have better diagnostic tools, better screening tools that can capture the women that aren't the average woman?"
It's a challenge many African-American women will have to come to grips with. About one-third who get breast cancer are younger than 50 years old.


in your face sciene/medical/who-ever-you-are board who suggested the new guidelines.

ok, this was what i caught the very end of, however they had someone on afterwards. a female who said she tried to talk to several people on that board. none of the board would talk to her with a tape recorder. gee. what she did learn was that they all were very adamant that $$ had nothing to do with the decision. however she did state some math. $$ saved just by postponing mammos until 50 in the US would be upwards of a billion dollars. you can sit there and tell me that you know $1,000,000,000.00 minimum could be saved if we postpone starting them until we're 50 and this had nothing to do with any influence what=so-ever on your decision. i got an ocean-front property in nebraska to sell you!

12/6/2009

this is a totally emotional post.

after i was diagnosed i noticed a huge change in my attitude towards lots of things. many things that would've annoyed me before became 'oh well' after. if stuff didn't happen i didnt' let it bother me.  i was really very calm and at peace i guess one could say.

lately however i've noticed getting uppity about lots of things. matt and i have been having arguments again. i'm afraid that as time goes by i'm slipping, slipping, back into the old ways.

i don't want to go back to that. but i don't know what to do. how do i stop it? it wasn't a conscience decision 3 years ago (tomorrow), it just happened. this has me very upset. i feel lost.

there have been many reasons why matt doesn't want to actually marry me, and these last 3 years have been a big step forward, and now we've started to argue again it just reminds me that while we make such a great couple we are so far from spending the rest of our lives together, but for him marriage means something that we'll probably never have.

3 years ago (in 50 minutes) marks the date i was diagnosed with breast cancer, and my life has never been the same. i have learned so much, seen so many beautiful things, experienced things i would never have thought, ever dared to do. and matt has been tehre by my side the entire time. i'd be so lost without him. he's my lobster.

11/19/09

yes, these new guidelines have really sparked a squat-load of fire.

here's a transcript from NPR's "all things considered" that aired today.

Breast Cancer Advocates Not Buying New Guidelines

November 19, 2009 - ROBERT SIGEL, host:
From NPR News, this is ALL THINGS CONSIDERED. I'm Robert Siegel.
MELISSA BLOCK, host:
And I'm Melissa Block.


The new mammography recommendations that came out this week have sparked scientific debate. They've also struck many women in a very emotional place. For breast cancer survivors and the groups that advocate for them, the message that early screening can save lives is a powerful one.
NPR's Allison Aubrey reports on how they're reacting to this week's news.

ALLISON AUBREY: If you take a group of 1,900 women in their 40's and invite each of them to have a mammogram, studies show this will prevent one woman from dying of breast cancer - one. When public-health types look at these numbers, they conclude that's a whole lot of testing for detecting so few cancers. So, why screen every woman, every year? But here's the rub: individual women don't think like public health folks. That one in 1,900 number means nothing to a woman who has a sister, a cousin or a friend with the disease.

Ms. ROCHELLE FERRIS: You know, in my circle, I probably know ten women who are diagnosed in their 40's.

AUBREY: Rochelle Ferris had breast cancer several years ago. She and fellow survivor Kathy Sims both say they were shocked when they heard about the new task force recommendations advising against routine screenings for women of their age.

Ms. FARRIS: I was angry. I'm still angry. I'm angry because if I had taken that path and not had this mammogram, I wouldn't be here today.

AUBREY: The breast cancer community that Sims and Ferris both feel a strong connection with has been stitched together largely by the work of the Think Pink folks. The group's Susan G. Komen for the Cure has managed to meld its health advice and advocacy into a powerful brand, which helps raise money, fund research, all the while making breast cancer survivors feel like princesses, at least that's the way Rochelle Ferris says she feels when she participates in the annual Walk For The Cure.

Ms. FERRIS: Oh, my gosh, they parade you through the grounds with 7,000 people. They give you roses, they give you crowns. You know, they have, you know, very famous entertainers come and sing. It's - yeah, it makes you so feel very special.

AUBREY: Hearing all this, it may not be surprising that Ferris and Sims both say they trust the advice of this group, the breast cancer community they know and love, much more than they trust the new guidelines of the U.S. Preventive Services Task Force, a group they know nothing about. Of course, Farris says, she turned to her doctor for advice too, but the point here is when it comes to changing public opinion on a topic as sensitive as breast cancer, it really matters who is delivering the message.
Allen Adamson is a branding expert with the New York-based firm Landor. He says as he watched at pink movement soar, he sees an incredibly effective operation.

Mr. ALLEN ADAMSON (Managing Director, Landor, New York Based Firm): The advocacy groups have done a great job in building a relationship with their constituents - talking to them, engaging with them, and being there for quite a while now. And so as such, they're a real brand, these women, these constituents trust and believe in.

AUBREY: This analysis is nothing but flattering to Nancy Brinker. She's the founder of the Susan G. Komen for the Cure, the woman behind all the pink. She told me that she knows there's been a lot of criticism of her group over the years for turning a cause into a powerful industry. But as a result, she's got a lot of influence and she plans to use it to push for new breast cancer screening techniques that could improve mammograms or replace them altogether.

Ms. NANCY BRINKER (Founder, Susan. G. Komen For The Cure): And the real issue is we need to find better, faster, cheaper, more specific and more diagnostic screening tools.

AUBREY: So, here's the interesting point: her group does disagree with the new task force recommendation. For now, they say women in their 40's should continue getting mammograms. But Brinker's group also recognizes, just as the task force did, that there is uncertainty about how well mammography works particularly for women younger than 50. This is a big point of consensus and if more women understand that this screening tool isn't perfect, it may help put the role of mammograms into better perspective.

Allison Aubrey, NPR News, Washington.
BLOCK: A little later this hour, we'll talk with two doctors with different views on breast cancer screening.

http://www.npr.org/templates/story/story.php?storyId=120581364
is the address with the story link. the transcript does not include the 2 doctors (opposing sides) which is what i want. 

today, friday, on KUOW's "weekday" they opened the regular show with governor gregoire by asking her about teh new mammo guidelines. our gov. is a BC survivor or 5+ years.

there's no transcript of the story, but you can listen online or download and listen to the 1st 10 mins.

in a nutshell, she's appalled at the findings.
http://kuow.org/program.php?current=WK1

 

11/18/09

there were a couple articles in our local paper yesterday, and boy did they stir up the fire at group last night! i truly hope that no one in their right mind can really believe the 'new findings' are actually a good thing. in fact, Dr. Lehman, a very well-known and prolific oncologist here in seattle downright refutes the findings! and rightly so. it really got my ire up, as you'll notice from my insertion comments. everyone i know who has read this is really irate at this "board" mentioned in the article.

before anyone reads this i want to make it *very* clear. if i (and many women i now know) had followed the advice of these 'new findings' we would be dead before the age of 50. there. it's as simple as that. if you are under the age of 50 and your insurance refuses to pay, fight them tooth and nail. it's your life that you are talking about!

http://seattletimes.nwsource.com/html/health/2010285760_apusmedmammogramadvice.html

New mammogram advice raises questions, concerns

For many women, getting a mammogram is already one of life's more stressful experiences.

By JOCELYN NOVECK  AP National Writer

NEW YORK —

For many women, getting a mammogram is already one of life's more stressful experiences.
Now, women in their 40s have the added anxiety of trying to figure out if they should even be getting one at all.
A government task force said Monday that most women don't need mammograms in their 40s and should get one every two years starting at 50 - a stunning reversal and a break with the American Cancer Society's long-standing position. What's more, the panel said breast self-exams do no good, and women shouldn't be taught to do them.

[whether or not women should do self exams has been a back-and-forth issue the last few years. mainly because we aren't really taught how to do them correctly, and yes, it does result in a number of unnecessary biopsies. but wouldn't you rather have a biopsy and find out it's nothing than to not have one done and get a diagnosis of stage 4?]

The news seemed destined to leave many deeply confused about whose advice to follow.
"I've never had a scare, but isn't it better to be safe than sorry?" asked Beth Rosenthal, 41, sitting in a San Francisco cafe on Monday afternoon with her friend and their small children. "I've heard of a lot of women in their 40s, and even 30s, who've gotten breast cancer. It just doesn't seem right to wait until 50."
Her friend agreed. "I don't think I'll wait," said Leslie David-Jones, also 41, shaking her head.
For most of the past two decades, the American Cancer Society has been recommending annual mammograms beginning at 40, and it reiterated that position on Monday. "This is one screening test I recommend unequivocally, and would recommend to any woman 40 and over," the society's chief medical officer, Dr. Otis Brawley, said in a statement.
But the U.S. Preventive Services Task Force, a government panel of doctors and scientists, concluded that such early and frequent screenings often lead to false alarms and unneeded biopsies, without substantially improving women's odds of survival.

[just who is on this board? are there any women? are there any who have been diagnosed with *any* types of cancer? true, if biopsies and tests come back negative it won't improve lifespan, but WTF about those of us who came back positive? more and more women are getting mammos, and more and more are being diagnosed because of it. if all these women waited until they were 50 1/2 of them would be dead by then!]

"The benefits are less and the harms are greater when screening starts in the 40s," said Dr. Diana Petitti, vice chair of the panel.
Breast cancer survivors who were diagnosed at a young age were among the more vocal critics of the new guidelines.
"This sure seems like a big step backwards to me," said Debbie Hayes, who was diagnosed with Stage 2 breast cancer at age 33 after finding a lump during a self-exam. A mammogram, ultrasound, biopsy and finally a mastectomy and chemotherapy followed.
"People are being diagnosed even in their early 20s," said Hayes, now 53 and a volunteer coordinator for the Chicago-based Breast Cancer Network of Strength. "Mammograms are a key element of that."
But another breast cancer survivor thought the new guidelines sounded about right - even though she was diagnosed at age 37, two years ago.
"They seem pretty sensible to me," said Claire Mayne, of San Francisco. "The death rate is not going down because of the earlier mammograms. I'd feel comfortable telling a friend to wait until she was 50."

[this gal is, ok, i'll say it, crazy. just plain dumbshit crazy. she was diagnosed at 37. does she not get that she'd be dead by 50 if she followed these guidelines? all i can think of is that she is in deep, deep denial.]

Mayne was more doubtful, though, about the advice on self-exams; that's how she found her own cancer.
Most women in their 40s interviewed for this article said they planned to stick with the old mammography recommendations, at least for now.

[not only am i going to have a mammo every summer, but i intend on continuing with a MRI every winter!]

"I have two young children," said Amber Smart, a 47-year-old mother in Agoura Hills, Calif. "There's a lot of years left that they need me." She's been having mammograms every six months, since she was 44, to make sure that certain dense areas of her breasts aren't cancer.

[now this is a toss-up. if she's got a family history or for whatever reason had genetic testing done and found a mutation, then ok, i get it. but if she just has dense tissue and nothing else in her history i think yearly is fine]

"I think it's kind of sad that they're basically saying, 'We can't afford to pay for the few people who may have it in their 40s, so a few people are going to die,'" Smart said.
Judy Finley, a flight attendant from Dallas, called the new recommendations "a terrible idea," and said she was especially worried that insurance companies might "pick up on this and quit paying for mammograms from 40 to 50."

[a very reasonable fear indeed.]

"I think it would be really sad," said Finley, who was walking through the Crown Center mall in Kansas City, Mo. "And I don't know how the U.S. government or a panel of government officials can think they know better than the American Cancer Society."
But there were those who saw the new guidelines as potentially a relief, a development that could save women from endless stress, false positives and perhaps needless procedures.

[yes it's stressful. shit, look at what stress i went through last week and it was, according to the dermatologist eczema. but heck, i'd rather have a week of stress while tests are being run and find out it's nothing! like the people who are afraid to get mammograms because 'they hurt'. oh wah! nut up or shut up! 10 minutes of pain for a lifetime of peace! that's what you're spending and getting! - at least if it's a clear mammo. and if it turns out it's not believe me, you won't be crying over the little pain you have from the squish! you'll be crying with joy that you are still alive!]

"I can't tell you how many friends I have who've gone through severe worries from false scares," said Maren Waxenberg, a Manhattan mother. "At least three of them have had biopsies. And it turned out to be nothing."
Waxenberg herself, 46, has not yet had a mammogram. "I'm not concerned at this age," she said. "I plan to do it, but there's no sense of urgency."
The new guidelines are for the general population, not those at high risk of breast cancer because of family history or gene mutations.


[here's part of the kicker. guidelines are for general population. one doesn't always know what the family history is. the mutation could be carried for several generations before blindsiding someone with cancer. i knew about 1 aunt, i had forgotten about another, and never knew about the 3rd. i'm a perfect example of what they call the general population. and if i had waited, well, i hope i had a nice headstone!]


They say:
-Most women in their 40s should not routinely get mammograms.
-Women 50 to 74 should get a mammogram every other year until they turn 75, after which the risks and benefits are unknown. (The task force's previous guidelines had no upper limit and called for exams every year or two.)
-The value of breast exams by doctors is unknown. And breast self-exams are of no value.
Medical groups such as the cancer society have been backing off promoting breast self-exams in recent years. Decades ago, the practice was so heavily promoted that organizations distributed cards to be hung in the shower demonstrating the circular motion women should use to feel for lumps.

[this is true. i still think it's better to do it and if there's anything different to have it checked out. but i do get both sides of this argument.]

As for mammography, the panel's new recommendations are more in line with international guidelines, which call for screening to start at age 50; the World Health Organization recommends the test every two years, and Britain says every three years.
They were sharply challenged by the cancer society on Monday.
"The task force advice is based on its conclusion that screening 1,300 women in their 50s to save one life is worth it, but that screening 1,900 women in their 40s to save a life is not, Brawley wrote.
That stance "is essentially telling women that mammography at age 40 to 49 saves lives, just not enough of them," he added.
But Dr. Amy Abernethy of the Duke Comprehensive Cancer Center agreed with the task force's changes.
"Overall, I think it really took courage for them to do this," she said. "It does ask us as doctors to change what we do and how we communicate with patients. That's no small undertaking."
--
Associated Press writers Marilynn Marchione in Milwaukee, Stephanie Nano in New York, Evelyn Nieves in San Francisco and Heather Hollingsworth in Kansas City, Mo., contributed to this story.


 here's an OpEd piece that was printed yesterday, too

http://seattletimes.nwsource.com/html/opinion/2010290063_lynne18.html

Mammogram debate and a false economy

New government breast cancer guidelines wrongly downplay the importance of mammograms and monthly breast self-exams.

By Lynne K. Varner Seattle Times editorial columnist

Obviously, I am not more knowledgeable about breast cancer than a government-led panel of experts. Yet I know enough to look askance at advice that only women 50 and older get mammograms every two years and those in their 40s skip the test altogether.
New cancer-screening guidelines, published in the Annals of Internal Medicine, fly in the face of conventional wisdom and long-standing consensus from cancer groups, radiologists and other experts that women get annual mammograms starting at age 40.
Science routinely second-guesses itself and women have often been caught in the middle. The controversy about estrogen-replacement therapy is one example where women were forced to weigh conflicting medical advice.
Moreover, the U.S. Preventive Services Task Force isn't nixing mammograms. They acknowledge the test's early-detection benefits.
But here's what galls me: Not enough lives are saved, the experts say, to justify mammography as a routine screener for breast cancer.

[i think this is what has deep down really gotten to all of us. not enough lives were saved. so my life is nothing to them. they don't care if i live or die. forget about all my family and friends who would care - "you aren't worth it either, because nothing you say will change my mind. this person wasn't worth saving." is basically what they are saying. how does that make you feel? do you know someone who was diagnosed before the age of 50 with breast cancer? would you miss them if they had died because they were not diagnosed because they followed the new guidelines? well, tough shit. your friend wasn't important enough for us and neither are you.]

Here's a question: Of the lives saved by mammograms, which ones weren't worth the effort? Certainly my sister's life — saved not only by a mammogram's detection of something amiss, but by subsequent biopsies, surgeries and rounds of chemotherapy — was worth the effort and more.
But, says the panel of experts, mammograms' potential for harm outweigh their benefits. In about 10 percent of cases, they produce false-positive results, leading women to undergo unnecessary follow-up tests such as biopsies, and in worse case scenarios, surgery, radiation and chemotherapy.
Women are not to blame for false-positive readings. The solution is not to take away a woman's choice to have a mammogram, but rather to work to reduce the rate of false readings.

[yes!]

I can only imagine that if men were experiencing abnormally high rates of false positives on tests for testicular cancer, heads would be rolling in radiology departments nationwide.
Mammograms are not a walk in the park. I speak with experience as fresh as Monday when I rested against a chilly slab and experienced that familiar whack and intense pressure from a large machine built to flatten one's chest to the width of a slice of pita bread.
Would I prefer to forgo this experience? Absolutely, which explains why my annual exams tend to get scheduled only after a friendly, firm reminder from my physician.

[she wouldn't need this reminder if she went through a diagnosis, or even if there was something amiss that they needed to watch!]

I don't want to get mammograms. I have to. Spurring me on is not just my family narrative, but this reality: Breast cancer is the most commonly diagnosed cancer in American women, excluding skin cancer. It kills more women than any other cancer except lung cancer.
Last year, more than 182,000 American women were diagnosed with invasive breast cancer and 40,000 died of it.
If only those 40,000 women could be asked how they feel about being rescued from the trials of mammography. Better yet, how they feel about the guidelines' advice to eschew monthly breast self-exams because they have not proven to reduce mortality from breast cancer.
Adding to my annoyance is this intrusion of politics into medicine. Under health-care-reform legislation in Congress, the new recommendations would help set standards for what preventive services insurance plans would be required to cover.
Have insurance companies just been given a green light to refuse to cover mammograms for women under 50? If so, at nearly $200 a test, working women and those who are low-income have been dealt a life-threatening blow.
I know science must operate in large statistical terms but people are not numbers. If the life saved by a mammogram is my own, I am more than justified in wanting early and routine screenings.
Lynne K. Varner's column appears regularly on editorial pages of The Times. Her e-mail address is lvarner@seattletimes.com

today (wednesday) were a few more responses

on msnbc
http://www.msnbc.msn.com/id/33996346/ns/health-cancer/

Baffled by breast screening advice?

Dr. Nancy Snyderman answers your questions about the new guidelines

By Dr. Nancy Snyderman,Chief medical editor NBC Newsupdated 2:19 p.m. PT, Tues., Nov . 17, 2009

 For the last 20 years, I — along with most other medical experts — have been saying the same thing over and over about screening for breast cancer: early detection saves lives.

That advice has been turned upside down with the new recommendation issued by a government advisory panel. The U.S. Preventive Services Task Force says that most women don't need to get a mammogram until age 50, unless they have a known risk factor.

[again, *few* women really know. just your mom having it should be enough to put you into the 'known risk factor' but with these new guidelines that is made very vague.]

This major reversal in breast cancer screening advice is causing a lot of confusion and anger among women who doubt the motivation and timing of the decision.

Read on for answers to your questions about the new mammogram guidelines.

What are the real risks from starting to have a mammogram at age 40?
— Anonymous

A woman in her 40s has denser breasts, which means mammography will miss some cancers because it can’t see them. Or it will see normal lumps and bumps and misread them as cancers, which can lead to further testing, sometimes biopsies, more anxiety and money not prudently spent.

[find a location with a digital machine! it's SSSOOOO much better for resolution. plus you have to factor in the experience of the radiologist who reads the films. dr watts was like, well, it could jst be breast tissue, it could be calcifications, i'm not sure. i just look at this and have a gut feeling we should do more testing. and she was right! turned out to be cancer throughout my breast!]

Mammograms are not freebies. Every time you go in for a mammogram, you get radiated and there is a cumulative effect. We’re exposing women to radiation for no real benefit for 10 years.

[saving a life is not a real benefit... yup, that's what they said]

Personal anecdotes matter, of course, but this was really looking at the hard numbers. In order to save one woman’s life in her 40s, you have to screen 1,900 women. You could conversely say you’re unnecessarily radiating 1,900 women to save one life. If you are that one life, you might say it’s worth it. If you’re one of the 1,900 women who don’t need the X-ray, you’ll say it doesn’t make any sense.

We know that X-rays over a long period of time damage cells and are their own risk factor for cancer, including breast cancer. That’s the concern here.

We have no problem telling people to get prostate screening at 50, or to get colonoscopies starting at 50. Now, we’re just saying mammography at age 50.

[but how many pre-50 year olds are getting diagnosed with these cancers? as opposed to more and more women getting diagnosed with BC before age 50...]

The scientists have been looking at this for a long time. This is not President Obama screwing with your health care. This is not the insurance lobby trying to take health care away from people. This advice is transparent scientists making recommendations based on data.

Would you recommend against having a mammogram for a 40-year-old lady with no known risk factors who asks you for one?
— Aiman, Meadville, Pa.

Yes. I happen to believe that these numbers are for real. I am looking at it through the lens of my daughters. I have a 23-year-old daughter. Based on these recommendations, would I urge her to go in at 40 with no family history and no other risk factors? No.

I respectfully have changed my viewed based on the latest evidence.

I take a lot of the responsibility and a lot of the blame for being a medical correspondent and preaching early detection. The only problem was, we didn’t ask the big question: does finding tumors equate to saving lives in that 40-49 year-old age group? The answer is no.

I have learned as much from this as everybody else. But I respect the people who did the research. As painful as this is, we should applaud the transparency of science as it evolves and the fact that we have people trying to figure out the best answers for us.

The whole idea that younger women shouldn’t be screened because they’ll just be unduly anxious strikes me as rather patronizing. Why is “worry” such a concern and a reason to deny care? I know plenty of women who died of breast cancer but none who died from worrying.
— Anonymous

All the talk of "worry" may sound patronizing. Although most of us don’t fret about our mammograms, there are women who are frozen with fear every time it comes up. We can’t negate the fact that fear occurs.

[ i was scared shit-less when i went in. that din't stop me from doing it though. i'd rather have to take a valium and be scared stiff - you are allowed to have someone go with you! - and find out i need to have a mstectomy to live!]

And it’s not about denying care, it’s about seeing who needs the screening and who the screening serves best? How do we protect people from unneeded radiation and yet get the women at risk in to see the doctor. If you’re 40 and have a strong family history or other risk factors, no one is going to say don’t get screened. We’re just saying, "Oh, I‘ve turned 40 and need to go in for my mammogram" is no longer the smart way to approach this.

[ i still disagree - most women do not know how high of a risk they are]

I will be 45 in two months, never had mammogram, but it does run on one side of my family. What would the recommendation be? Wait until 50 still or have at least a first one to see where I stand?
— A.L., Brooklyn, N.Y.

This is where you sit down and have a conversation with your physician. What kind of family history? What kind of tumors? At what age? First-degree relatives? History of prostate cancer, colon cancer?

When you have the question of family history, that’s when you individualize. That may be the greatest gift of these new parameters. What they’re are saying is, don’t spray everybody. But the people who really warrant screening, absolutely they should get it.

[exactly - how many women are going to sit down and find out all this information? i can count on 1 hand. in a perfect world maybe but this ain't a perfect world.]

How can breast self-exams be a bad idea? Why in the world would the government discourage women from doing them? It’s free and many women detect their cancer this way.
— Anonymous

The yield of breast self examinations is actually quite low. No one is saying don’t do it. All the experts are saying is, it turns a woman into thinking her breast are a battle zone. It’s the monthly search and detect and most women don’t do it really well anyway.

Isn't discouraging self-exams all about insurance? How can you say it's not about the cost?
— Liz, Ridgeway, S.C.

This isn’t about insurance. Even with recommendations, insurance policies will not change overnight. Everyone will very carefully look at these recommendations and individualize.  The insurance industry was not part of this task force. These are just scientists.

It does raise an interesting question. What do we spend our money on and is this a form of rationing? These recommendations may be a form of rationing in a good sense. Just as you ration how much you eat at breakfast, lunch and dinner. You have to ration how you access the health care system. Not to be denied health care, but to spend your health care dollars prudently. Perhaps the money you save in your 40s can be invested into finding better screening tools than mammography or better cures for women who have been diagnosed. It’s to make things better, not as a way to turn women away at the door.

How about approving MRIs which do not expose us to radiation, but are quite expensive and hard to get approved by insurance companies.
Esther, Lincolnwood, Ill.

In the 40-49 age group, they looked at digital mammography, ultrasound and MRI. It’s the same conclusion. Younger women have dense breast and they are hard to do imaging in no matter what.

It really is a message to women that — while we have politicized breast cancer and we have an awareness of breast cancer and all of that is good — we have scared ourselves into a corner.

Perhaps it’s OK for most women with no risk factors to take a collective breath. I don’t mean that in a patronizing sense. It’s just that we all feel the pressure of what we think is going to befall us.

Heart disease is a still bigger issue and we are not as militant about heart disease as we are about breast cancer.

[what i wonder is: we had all this talk about health care reform. insurance and doctors were told to cut costs. so a group of people get together and asked 'how do we cut costs?' answer: delay regular screening mammograms by 10 years. then change it to every other year instead of every year. right there we've saved how many oodles of dollars?]

11/10/09

tim, the owner of the gym where i work out handed me a printout of the following.

http://www.cnn.com/2009/HEALTH/08/13/weight.lifting.breast.cancer/index.html

Weight lifting benefits breast cancer survivors

updated 11:00 a.m. EDT, Thu August 13, 2009

Occupational therapist Cathy Kleinman-Barnett works with breast cancer patients, but she has never encouraged women with lymphedema, a breast cancer-related swelling of the arm, to lift weights.

However, she may be changing her tune, thanks to a new study in the August 13 issue of the New England Journal of Medicine. It turns out that breast cancer survivors with lymphedema who engage in a progressive, supervised weight-lifting program fare better than their counterparts who do not lift weights.

Lymphedema occurs in as many as 70 percent of women who have breast cancer surgery. Sometimes lymph nodes in the armpit are removed for cancer testing, which can cause the clear fluid (lymph) that circulates in the body to build up in the affected limb. As a result, women must wear a compression sleeve and glove during waking hours.

"For so long, we were taught no heavy lifting and no resistance for our patients, but this article is shouting out yes to resistance and weight," says Kleinman-Barnett, who is a lymphedema specialist at Northwest Medical Center in Margate, Florida. "The benefits seem to outweigh the risks, and a weight-lifting program may help these women prevent injuries from everyday tasks by boosting strength in the affected limbs." Health.com: Fit at any age: Your 50s strength workout

Oftentimes breast cancer survivors were told to steer clear of weight lifting -- or even carrying their children or heavy grocery bags, because doctors thought it could worsen the swelling. The new study, the largest to date, seems to contradict that recommendation.

In fact, the research team led by Kathryn Schmitz, an associate professor of epidemiology and biostatistics at the University of Pennsylvania, in Philadelphia, and a member of the university's Abramson Cancer Center, found that weight lifting increased muscle strength, decreased the number and severity of arm and hand symptoms, and reduced lymphedema exacerbations.

"Our study shows that participating in a safe, structured weight-lifting routine can help women with lymphedema take control of their symptoms and reap the many rewards that resistance training has on their overall health," says Schmitz. Resistance training helps build bone density and can improve health in general. Health.com: How to spot symptoms of breast cancer that has spread

In the new study, 141 women with lymphedema after breast cancer treatment were divided into two groups. Women in the weight-lifting group received a one-year membership to a local gym. For the first 13 weeks, they participated in twice weekly, 90-minute supervised exercise sessions that included stretching, a cardiovascular warm-up, and abdominal and back exercises. The weight-lifting exercises involved low weights, and one to three new exercises were added at each session.

The number of sets increased from two to three, with 10 reps in each set, during the first five weeks. If the women felt OK, more weight was added.

After 13 weeks, women in the weight-lifting group continued twice-weekly exercise sessions on their own for an additional 39 weeks. By contrast, the women in the other group continued their normal exercise routine throughout the study period. All women wore a custom-fitted compression garment on their affected arm during their workouts.

Overall, the women who lifted weights experienced fewer exacerbations of their lymphedema, and they showed a reduction in symptoms compared to the women in the control group. Nineteen women in the control group had lymphedema exacerbations, compared to nine in the treatment group, the researchers report. A similar proportion of women in both groups showed an increase of 5 percent or more in their limb swelling.

Kleinman-Barnett currently prescribes range-of-motion exercises, stretching, and massage to stimulate lymphatic flow in her patients. "I will now incorporate weight lifting using 2 to 3 pound weights, and slowly increase it, and teach them how to monitor themselves to be sure they are not increasing swelling," she said. Red flags that weight lifting may be making things worse include more swelling, heaviness, and pain in the arm, she said.

Dr. Marisa Weiss, the president and founder of the advocacy group Breastcancer.org, and the author of the forthcoming new edition of "Living Well Beyond Breast Cancer," said the new study is good news for two groups of women -- those who have lymphedema and those at risk of developing it. Health.com: Tips for staying hopeful if breast cancer returns

"For women who already have lymphedema, this is good news because we have not known how to get them back to moving and grooving again," said Weiss, who is the director of breast radiation oncology and breast health outreach at Lankenau Hospital in Wynnewood, Pennsylvania. "Our arms are essential to our ability to be physically active, and we haven't known how to advise these women in the past."

Lymphedema is more common after surgeries that remove most or all of the lymph nodes in the under arm area because there are few if any lymphatic drains left intact after such surgeries, she says. "If regular weight lifting with a sleeve in a supervised setting is OK for women with lymphedema, then it is reasonable for women with breast cancer treatment who are at risk of developing lymphedema to go back to some of the things they enjoyed in the past," she said.

Karen Strauss, a 50-year-old breast cancer survivor who developed lymphedema four months ago, is excited about the findings because she may be able to return to some of the exercises she did before developing breast cancer. Health.com: Can Twitter and Facebook help fight breast cancer?

"I used to do a whole workout when I went to the gym, but I have gotten away from it because I am afraid I would make things worse," said Strauss, a clinical social worker in Fort Lauderdale, Florida. "I have been afraid to do anything, but not anymore."

Strauss currently wears a compression sleeve and glove, gives herself light-touch massages, and does non-weight-bearing exercises to treat her lymphedema. But the new study results have convinced her to talk to her lymphedema specialist about adding light weights to the mix. Health.com: Find out how to run your first or fastest 5K or 10K

 

11/9/2009 part 2

i get to the OB's office at 2.45 and luckily Jenny was running late. unfortunately she was running really late. it was 3.20 before i got called back. oh well. i was supposed to meet a cheryl at the gym at 3.30 to do some cardio but she'll have to deal with me being late.

i let jenny know all the 'nots'. and we reviewed my history as she wasn't familiar with all the cancer stuff.

she examined me and confirmed she couldn't feel any hard bits or lumps in the breast, so that's good. but we all know not all cancers are felt. she did say something that was encouraging. she said if i hadn't said anything and she was examining my breast she would think that was my natural skin coloration. so again, in a sense, that was encouraging. however i know it's not natural for me.

she said her gut said it could be 1 of 2 ways we go about figuring this out. i go to a dermatologist and i'd probably be told to put a cream on it and see how things go for about a week. or we go have a biopsy and see what that tells us.

at 1 point she asked me and was a little guarded how she put her question. in fact she didn't even really ask. i'm not sure i really knew what she was getting at, but i let her know that matt had sent me an im before leaving. he said to me he wanted me to make sure they can rule out something, but he made me promise i wouldn't look it up and scare myself. so i did. turns out he wants me to have them rule out paget's disease. it's a nasty cancer of the breast that starts at the nipple. i couldn't remember the details but i did recognize the name and knew it was a nasty diagnosis.

so anyway, i used that to let her know and she was glad i knew about it and wasn't going to freak out when she said the name. she did say it didn't look anything like any of the images she'd seen of it. which after i realized what she said leads me to believe she hasn't seen a case in front of her, but that's ok. as long as she knows what to look for, and what to do if she suspects it. which in my case she really doesn't.

but she understands with my history and peace of mind, and she also knows there are atypical presentations of various diseases and that it would be good to be certain.

we decided she'd confer with the doctor (remember jenny's the NP) and call me back either tonight or in the morning and we'd get a plan going.  i should not use a cream until after we do or have realized the need to not have a biopsy so we don't risk contaminating the specimen with the cream.

tomorrow morning i'm calling dr. clarfeld and getting in to see him. we'll see what he has to say, and go from there.

i know it's a little let down as far as information. but i really know nothing except i felt a whole lot better walking out of the OB office than i had walking in.

tonight the rashring is still there, and the nipple's actually quite tender now. but how much of that is directly linked to the rash and how much has been caused by us poking and pulling and pushing on it i can't say.

i do know if it's cancer of any type i'll probably lose that nipple since the rashring is right up on the areola. ond of course it goes to say that even if the cancer is at the nipple i'll just have a mastectomy. maybe they can use some of the good skin from my breast to remake the nipple...

11/9/2009

friday night after i was in bed i noticed a rash-like bit of skin around the top part of my left areola. this is the 'real' breast. didn't even think to look at the right side at that time. in fact, i kind of chalked it up to lighting. i remember thinking 'that's weird'. and then was so sleepy i really didn't think anymore about it.

saturday afternoon i was drying off after my shower and i happened to look up into the mirror. both breasts were exposed, and there was clearly a rash-like 'ring' around my left areola, and really not much around the right. well, immediately i'm checking it out.
it is not hot
not itchy
not burning
not cracking
not dry skin
not flaking
and no lumps or bumps below the surface could i feel.

realizing this is probably just an eczema issue, still i kind of scared myself and of course matt wasn't home. i got on the computer to see if any of a couple friends were online, all the while bawling because i've now got this horrible thought in my head, and matt gets in just as i'm starting to type in the 'hello' to my friend.

he does exactly the same thing i did, and asked about all the 'not' stuffs above. he says he's sure it's nothing, that it'll go away in a few days if it's irritated skin, and he points out the wee little bit around the right areola. it's enough at the time to calm me down and realize i've most likely over-reacted. after all, i had worn a snug shirt all day friday, and had actually put it on sat morning for my chores, so maybe it really is as simple as that.

we went to dinner sat night, up on sunday to meet friends for brunch, and while i noticed it was still there sunday night, i put it out of my mind.

but monday morning it's still there. and all the doctors are back in the office. so i emailed my GP and let him know all the 'nots' etc, and he totally understood my concern. without seeing it he says it sounds like an eczema, to get an OTC hydrocortisone type cream/lotion and apply as directed. then if it still is there in a week to definitely see the OB. the thing that keeps nagging at me however is eczema usually itches, or the skin is dry and cracking or flaking, and mine isn't. matt had a good idea - call and make an appt with my OB now, then i can always cancel. i'm thinking what if they have an appt today. at least i go in, she looks at it and laughs and says put this lotion on it for a week! what do i have then? peace of mind!

so it was 11.50 when i called my doc's office. the gal answered the phone and i told her i was a patient of doc otto, was a breast cancer survivor, and that i had found a rash type thing on my other breast. i had to swallow a sob. there i go, getting all worked up about it! she asked me my name and birthdate, then pulled up otto's calendar. well, it was 11.54 and she said otto was due to leave that office at noon, but her NP jennie is there and can see me at 2.40 today. so a huge thumbs up to this gal. i need to find out who she is. i was ok with taking a thurs or fri appt and doing the cream until then, but yes, i'd rather pay for the peace of mind. now if she had said 'there's nothing for 3 weeks', i would've been putting my foot down and letting them know i was coming in and going to sit there in the waiting room until they saw me LOL.

so that's all i know. in just over an hour i'll leave and find out i was right, it was just a weird rash and it'll go away in a few more days. and if it turns out i need to have some more tests done, well, i've been through some pretty tough ones so i doubt they can give me something that floors me. and absolute worse case scenario? i have a mastectomy on the left side. but the silver lining to that is - no more mammos, and i can go back to being a little smaller than i am no and i'll fit into that LBD i really like and haven't been able to wear since my reconstruction!

but i have to admit i'm scared or i'd be lying.

7/27/2009

matt and i did the STP (seattle to portland) again this year - as a fundraiser for bcrf. my goal was $5,000.00 this time, not anticipating getting any matches. i'm still waiting for checks so i still have no idea how much i actually raised. - most of the story will be under the sports blog, but i'll post something here with the total tally once i have it.

finally met my ob. i had to find a new one when i got a male gp and was dragging my heals. went in the spring 2006 but saw her np. then i was diagnosed and well, not much she can do so i didn't worry about seeing her again until after all this was over. she's nice. younger than i was expecting. then again, she's probably in her 40s and just looks young. good news about those pap smears - as i have no uterus or cervix there's no need to have a pap! yay! but she does still need to check the ovaries. she said we should do the blood draw and or the internal ultrasound every year until i have them out. even if i'm at a lower risk rate than i was initially, it's the smart thing to do. she didn't get the reasoning to wait until after i go through menopause, but she couldn't argue convincingly either. so i have to get a blood draw and they'll check my cbc, thyroid, ca125 (i think that's the name - it's the one that checks the ovarian cancer) and a few others. i'm going to ask if i can bring it back and have my vitamin-d level included. i probalby didn't blog the next mention as it was B.D. (before diagnosis) - but when i went to see her in '06 i had blood drawn at their lab. the tech was terrible! i was almost screaming, tears were rolling down my cheeks uncontrollably. no way i'll let her do it again. i stopped into my onco's office and asked the nurse if i could bring the paperwork there and have their lab do the draw and she said yes. whew! i'm so happy! so now i just have to get off my butt and do it. but i want to wait until it cools a little since it's going to stress me out anyway.

and then last thurs i went in for my yearly mammo. tech didn't even try to do the right side, so i'll be the one last year heard about it. i questioned her at the time but she didn't listen. had she squished hard enough to pop it she'd have a nice $$ bill on her hands! anyway, 2 from each angle and they looked good. forget the comparison between analog and digital imaging, just the difference in the tissue in the last 2 years has changed! i waited for dr. watts who came in with a big smile saying everything looked great. and gave me a big hug. then she asked about the STP and all. i thought that was real nice. i had sent an email to her but didn't know if it'd actually get there as i guessed at the address. then she said she wanted to make sure i knew - she's needing a break and is thinking of moving. to new zealand! she went last spring and fell in love with the place. she doesn't know if she'll really move or not, or if she'll just take a sabatical kind of thing or maybe just needs a change of scenery as far as work goes (like go to another hospital) but wanted to make sure i knew. she said she'd let me know where she was going to be so we could have a disc of my films sent to her still so she can keep up with me. i let her know i knew someone in group who just graduated with reading films and was interested in a part-time or job-share type of position for mammos, and dr. watts said to get her in touch. well, i emailed the gal but i don't know if she's gotten it yet or not. for my sake i hope dr watts stays. i was really sad the rest of the day and teary-eyed, too. it really got me down thinking about her not being there anymore. she's the one that read my 1st mammo way back when, and she's been there every step with me. geez, look at that, i'm crying again thinking about it! :-( it's way too hot to be doing that, so i'll cut this post short.