Pinktober Revolution
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I like the idea of passing out "information cards" with facts. I don't know how many people realize that mammograms have an 80% sensitivity, meaning that they pick up 80% of cancers that are actually present, so miss 20% of them. That is, they miss 1 out of 5 cancers, so these women are lulled into a false sense of security (like me). In addition, they are even LESS sensitive with younger women and women with dense breasts.
This is controversial for a lot of younger women here, but younger women with denser breasts are less likely to be diagnosed by mammogram, and in addition, they are exposed to so much radiation that it actually INCREASES risk of breast cancer over the years. So if you start having annual mammograms at 40 rather than 50, there are 10 more years of risk accumulating.
Slower growing cancers give you many chances to find them over a few years. Faster growing ones give you less time to find them, these are the ones that show up between annual mammograms or don't show up at all until they are large enough to feel, and some of these grow so fast that they are less likely to be cured. The slower growing ones are more likely to be cured with aggressive treatment, whereas the faster growing ones are more likely to metastasize earlier, making "cure" not likely.
I am not saying we should NOT screen for cancer with mammograms, but I am saying it is NOT THE ONLY ANSWER!!!!! I am SICK of people blaming the victim - "Oh, you are stage IV???? You must not have taken good care of yourself or had that annual mammogram!!!!" Baloney!
There is a lot of research looking at finding these cancers earlier, and that is good. But actually, many of the ones found earlier would actually never become invasive cancer. In fact, there is a recommendation to not even call "DCIS" cancer, because it may actually never develop into invasive cancer, so if you treat it aggressively, put a woman through toxic therapy and surgery and radiation, and that cancer never comes back, it may have actually been way overtreated, leading to all the SEs and morbidity from treatment, but that is counted as a "CURE". So many so-called cures are not really cures at all, but rather results from the treatment of a non-cancer.
Finding a cure????? Lots of progress by lots of investigators, but this is going to come in little baby steps, maybe a leap or two .... there are actually drugs that might be extremely helpful in treating some advanced cancers, and maybe even early stage, but the big drug companies are sitting on at least one of them that has been approved in Europe as a drug to treat osteoporosis, but also has anticancer properties, but it is not available in the US because the drug company is not putting in the $$$ required for a big clinical trial to get it approved for this use, and there are already drugs on the market to treat osteoporosis, so the return on investment for that indication would be too low to justify the clinical trial for that.
And there is something seriously WRONG with using PINK and this deadly disease to make money. It is just not ethically right to make money from someone's misfortunes, misleading well-meaning people into thinking they are doing something good, like supporting breast cancer patients ("victims") but actually they are spending their money to support corporate greed.
Enough of my rant .... if I get enough energy to actually put some of this stuff into a Word document and print it off onto some index cards, I will be proud of myself, but in actuality, I am more likely to spend my precious energy doing something fun for myself. I am too tired to worry about this too much - my time in this life is likely more limited than many of my friends and family, and I am trying to make the most of it, trying to find moments of joy and peace in each day, despite the 5 hours of care that my body now requires due to SEs from treatment, despite the multiple types of pain my body endures from treatments, despite the fatigue that is due to cancer and its treatments. I have a beautiful pale pink sweater that I bought simply because I liked it several years ago, but have not worn it since diagnosis, and don't want to give anyone the idea that I approve of pink.
Last year, I contacted several daytime show hosts to suggest they focus an episode during October on the realities of breast cancer and its aftermath, choices we make, clothing that no longer works for us, activities that no longer work for many women, as well as those who are fortunate enough to come through treatment "cured" and with enough energy to train for marathons and return to work that they love. There is definitely a bell-shaped curve for "survivors" in relation to their longevity, activity level, attitudes about reconstruction, use of complementary and alternative therapies, and all sorts of things, but the day-time TV show hosts have chosen to NOT include anything on their programs other than the usual "get a mammogram, save your life" attitude.
Really, now I am done with the rant. I promise. At least for today.0 -
Well said linda
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October no longer makes me weary...Pink Schmink! I start counting the days as the month draws to a close...because ... I know there are only a few more weeks to wait before the annual San Antonio Breast Cancer Symposium begins...
And Linda...I think the message about mammography is simple. SCREENING mammograms save lives...but not as many as most people think. Ignorance kills. Every woman should KNOW that we deserve better imaging, treatment, a cure and of course prevention. Every woman should know if she has dense breasts and what a Bi-Rad score is.0 -
Well said Mini.
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Damn I am dreading next month
Went to Walmart today...only Halloween stuff.
Hopefully it stays that was.
October 1 I start to wear my shirts.
I want a shirt that says
Everyone is aware
Find a damn/vaccine.
Anyone no where I can get it?0 -
Rant all you want Linda. We all feel the same way here.
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Granny
There is a site called BigFrog, they can print anything you want. I'm sure if you contact them they could do it, and mail them. I have used them.0 -
Thanks Spooky
Gotta check it out.0 -
Was in Walmart few days ago, pink shirts were in a prominent spot.
Went to Publix today, wanted a pkg of Green Giant green beans. Pink banner over the box.
Seems Komen has changed their tune some. Now they are all about awareness, a portion of this sale, blah blah.
Nestlé bottled water had the pink banner too. And the store had pink "green" bags.
Seeing that sooooo early really upset my stomach. Wasn't ready for it.0 -
Yoplait yogurts all have the pink lids now ...
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Saw that too. Yuck
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Went to Belk's yesterday to get a baby shower gift and thought I'd be safe since it's not October yet. Wrong! Huge pink ribbon banners hung all over the store. This is getting like Halloween and Christmas with decorations well before the time. Was even asked at the register if I wanted to donate to bc awareness, and said no--I am already aware. (Donations went to Komen and I will not contribute to them.)
Kathy
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I went to Walmart again last nite.
I saw nuthing
Now I'm wondering why?0 -
granny - maybe they took note of your shirt? Lol!
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Maybe they remember me from last year...makin a racket
Didnt wear the shirt yet.
At the first sign of any pink shit out comes the shirt..
I'm so ready ......0 -
Every store in my area of Ontario has had "pink" tik tacs on display on the front counters since the first week in September - we're talking drugstores, food stores, novelty stores, you name it! This is my first Pinktober since being diagnosed Stage IV but no change in my attitude I've always hated the "pinking"!
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DH prefers Yoplait yogurt but I have warned him that he is not to buy it as long as it has the pink lid! Last year, Giant Food used pink in packaging some of their brands. Hope they don't do it again this year. I refuse to buy anything with pink packaging for the month of October. I felt this way even before my DX but have gotten very vocal about it since last year. Sometimes when grocery shopping with DH and I start my we're not buying that routine, he looks at me as if to say "who are you and what have you done with my wife?"
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Granny ... Love. That. Shirt.
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First time here.
Granny - Are you at it again. I know how much you love the pink stuff - NOT!!!
Linda - Very well said.
The pink stuff doesn't bother me too much but Komen really pisses me off. That is just me.
Too many pages to go back and read so I'll try and follow the conversation.
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Linda- Keep up th!e rant! You deserve to rant with all you have been through and are going through still.
Groceries are turning pink...needed salteens for after surgery on Wed, the ones on sale were in the PINK box! Yuk!!!
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Ok...so I just saw this article on FB put on by one of our sistas.
Sooo I tried to get the damn article on here...
Well it didn't work
But
The huffington post???June 10th.
And the title is NANCY BRINKER,S high salary angers advocates after KOMEN fundraising DROPS,charity walks CANCELLED...
Very interesting.
Please read and comment.
Focktober is right around the corner..0 -
Here's the Komen take on the numbers-vs-money aspect of the Portland Oregon race. Thought you might find it interesting:
http://www.oregonlive.com/health/index.ssf/2013/09/portland_race_for_the_cure_fun.html
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Tampa walk has been cancelled after this year. I can't say I'm sorry
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Nice to hear that spookysmom.
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Wow! A new low. Seen on the side if a truck. A magnet with a picture of a Doberman. Says BARK FOR THE CURE.
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I got a flyer in the mail today from a hospital I wouldn't send a snake to. It's all about PinkArmy.com. I looked it up, and it seems different. There were no walks or fund raising for the cure that I saw. They say the system is broken, they can target a specific drug for your specific cancer, rather than one size fits all.
I was taught that if it sounds too good to be true, it's bogus.
I just don't know what to think of this. Maybe it's chemo brain,
Could somebody look at this and give an opinion ?0 -
U said it...if it sounds too good to be true it's usually not true.
I only give to BCO...as far as I'm concerned they are the only ones that help everyone.0 -
This is the first time in over ten years that I have checked out a website that had not been rated by McAfee, my anti-virus provider. I never visit a site that they haven't checked or that they have red flagged so I didn't look to see what they have to say.
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I received an invitation today from my cancer center inviting me to attend a "Celebration of Your Survivorship, Living Well Every Day AFTER Breast Cancer", all bedecked in pink flowers, and with "JOYFUL LIVING AFTER BREAST CANCER" on the reverse side. And also states that October is Breast Cancer awareness month and they are kicking this off in style with this October 1st "celebration".
I am Stage IV, I have infusions every 3 weeks, I am on two oral chemos, and I will NEVER reach the AFTER breast cancer until the day it takes my life. I am so angry at this, but maybe I am just being sensative. It just makes me want to vomit. I want to send them a nasty letter or something. I just think it was all sorts of insensativity to send this to a Stage IV terminal patient!
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