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Breast Cancer Awareness Month -- Pink Ribbons anyone?

ManWithaMission's picture
ManWithaMission
Posts: 497
Joined: Sep 2008

I can't belive that it is October 4th already and no one is talking about PINK RIBBONS! I LOVE OCTOBER!!!! It's the month I was born in. I'm a Libra(the scale)and a Dragon in the Chinese Calander.

I also try to inform people at this time that Men can/and do get Breast Cancer,too. That doctors should give men "breast exams" for lumps. That men over 50 need mamograms,too.

So let's get out our Pink hats, Pink T-shirts,Pink shoes and Pink Ribbons to celebrate!!!

(((HUGS))) and Prayers to all
A Pink Brother
Robert

SIROD's picture
SIROD
Posts: 2121
Joined: Jun 2010

October 13 is Metastatic Breast Cancer Awareness Day and we don't wear a "Pink" ribbon either. I have seen a lot of pink around already and try not to look. Pinking garbage cans, cement trucks, oil trucks, newspapers, the white house, foot ball players, cupcakes, yogurt doesn't equate to a cure. It does go a long way in confusing people that we have a cure and few people die from breast cancer.

I always inform people that it is a disease that doesn't discriminate. It can happen to both sexes, doesn't matter if your sitting on a pot of gold or have 2 cents to rub together, doesn't matter if your 93 or 13, you can still have breast cancer.

I have loathed the color pink ever since I was diagnose, 18+ years ago. All the hoopla for "Racing for a Cure" or "Relay for Life" neither have come close to finding a cure. It has lined the pockets of CEO with the color green (money).

Robert the pink parade isn't for you, me and thousands of others living with metastatic breast cancer. You need to give the pink hats, pink t-shirts, pink shoes and pink ribbons to the "Survivors".

October was always my favorite month, now I find it the worst month of the year. What happen to orange and black for October?

Doris

SIROD's picture
SIROD
Posts: 2121
Joined: Jun 2010

1. No one dies from breast cancer that remains in the breast. Metastasis occurs when cancerous cells travel to a vital organ and that is what threatens life.

2. Metastasis refers to the spread of cancer to different parts of the body: bones, liver, lungs or brain.

3. An estimated 155,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.

4. Treatment for metastatic breast cancer is life-long and focuses on control of the disease and quality of life.

5. About 6% to 10% of people are Stage IV from their initial diagnosis.

6. Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person's original diagnosis and successful treatment checkups and annual mammograms.

7. 20% to 30% of people initially diagnosed with early stage disease will develop metastatic breast cancer.

8. Young persons, as well as men, can be diagnosed with metastatic breast cancer.

9. Like early stage breast cancer, there are different types of metastatic breast cancer.

10. Treatment choices are guided by breast cancer type, location and extent of metastasis in the body, previous treatments and other factors.

11. Metastatic breast cancer is not an automatic death sentence. Although most people will ultimately die of the disease, some will live long, productive lives.

12. There are no definitive prognostic statistics for metastatic breast cancer. Every patient and their disease are unique.

13. To learn more about National Metastatic Breast Cancer Awareness Day and access resources specifically for people living with metastatic breast cancer and their caregivers, visit www. mbcn.org

Taken from the mbcn.org web page

ManWithaMission's picture
ManWithaMission
Posts: 497
Joined: Sep 2008

I agree with you,Doris,about many peoples pockets being lined with the "green" stuff instead of finding a cure for breast cancer. I also love black & orange for this month,too.

I am so sorry that you have been "PINKED OUT". It's kind of funny to see big,strong men wearing pink shoes though.

Robert

mom62
Posts: 600
Joined: Mar 2004

Doris,

I am a survivor living with cancer. Please don't tell Robert pink isn't for him. It's his choice. I think you were a little over the line with your comments. While I agree with some of them they should have been on a different post. I really don't need a "date" dedicated to me. Think of all the cancers that don't get the recognition that ours does, just saying. JMO. Not trying to offend. I love my PATRIOTS wearing pink. I think it's cute. Love my Wes Welker!

Terry

SIROD's picture
SIROD
Posts: 2121
Joined: Jun 2010

Robert, I don't know what date is your birthday, Have a Happy One..

Didn't mean to rain "Pink" on your post. So many people don't understand that there is a difference between those who are stage 0-3C and stage IV. So many don't even know there is a special day for us, October 13th.

Doris

ManWithaMission's picture
ManWithaMission
Posts: 497
Joined: Sep 2008

My birthday is October 7th. Don't worry about "raining on my post", that's just how you feel about being "victimized" by large corporations taking advantage of people with this desease.

I was Stage 3 bc in 2007. Was cancer free for three years before it metastasized to my bones in October 2010. It is in my ribs,upper & lower spine, right hip and now in my neck. I also have 3 small "dots" on my left lung. I assumed that I was still Stage III till my onc told me in Jan. of this year that I was in fact Stage IV. I am planing on living a very long time still.

I love seeing things from your point of view. Don't ever be afraid to "rain" on somebody if you don't agree with them, that's freedom of speach!

(((HUGS))) and Prayers to you,Doris.
Robert

trsmith0104
Posts: 35
Joined: Jul 2012

Robert, In case I don't get on line on October 7th, I wish you a HAPPY BIRTHDAY and MANY MORE!!! It is people like you that are helping me to keep a positive outlook after being newly diagnosed. I start chemo tomorrow and will be thinking of everyone on this site that has been inspirational to me.

Tonia

Christmas Girl's picture
Christmas Girl
Posts: 3643
Joined: Apr 2009

Awww, shucks... I'm a day late; but, nonetheless sincere.

Hope your birthday yesterday was fabulous, and that you celebrated in style.

Kind regards, Susan

P.S.: Addressing all other discussion tangents created here, I have no comment. Except for one - I have absolutely no tolerance for those who are intolerant.

Allie
Posts: 2
Joined: Oct 2012

I was DX Stage IV BC back in 1998 and I didn't realize there isn't specific date just for Stage IV Survivors. I myself am very proud to wear pink and for all those that also wear pink to show support whether its for someone they know or not. I also do not think I am better than anyone who is stage 0-3, we all have to face this awful disease. I am all for Pink Pride!

Allie
Posts: 2
Joined: Oct 2012

Sorry-didn't mean to post that more than once!

Christmas Girl's picture
Christmas Girl
Posts: 3643
Joined: Apr 2009

I agree with and support your perspective, wholeheartedly. During the several years I've now been a member of this group...

Wish I had a nickel for each time I've typed: "... it's not a competition..." Each and every aspect of breast cancer - or ANY cancer, for that matter - is crap, ABSOLUTE CRAP. Many different types of surgeries, invasive treatments, oral medications, and all that goes along with - healing & recovery, infections, side effects, permanent damage, living with risk, etc., etc., etc. ... Yep, ALL OF IT SUCKS.

Yet, we endure. And here, we support and encourage each other. No matter what...

Congratulations on your own long-term survivorship! With my very best wishes for many, MANY more years of it yet to come!!!

Kind regards, Susan

P.S.: For me, BC #1 in 2003 - Stage 3. BC #2 in 2011 - Stage 1.

3 + 1 = 4

Intending no offense to all my pink sisters here who are specifically diagnosed as Stage 4, which I am not (at least, not yet)... Openly admitting - mentally & emotionally, kinda feels like 4 to me...

Shack
Posts: 1
Joined: Oct 2012

WOW! A lot of nerves were touched by this. Please allow me to respond with my perspective.

To begin, I must applaud you for your dedication to doing the research and getting the word out there about metastatic breast cancer. That kind of dedication put to the proper use could do wonders for any cause! And you are right. There is a difference between those with mbc and those diagnosed with stages 1-3. However, I don't see that it warrants the comments about the rest of us not knowing the "dark" side of breast cancer. It's dangerous to make comparisons about someone else's illness. There is and always will be someone around who will have a darker side in their life. I lost a brother to pancreatic cancer. There was much light at all to that one. My neighbor lost a niece at age 30 to ovarian cancer. Again, not much light. Although I do not face the same prognosis as you, (at least not at this point) my breast cancer was (sometimes still) dark. It was dark for me and my family. Two years prior to that I was diagnosed with a brain aneurysm that required craniotomy surgery. Do you want to compare now? The up side: I learned a lot and I received a ton of blessings through both health scares.

If my cancer comes back one day, I want to make sure that the days I have left are spent living, not whining. That's a hard choice to make when receiving a dianosis, but for me it was the only decision. I choose not to waste my cancer. In a way, neither are you, with your efforts to get the word out about metastatic breast cancer. Again, you are to be commended for that. But please be cautious about the words you choose. The rest of us who have NOT had mbc went through treatment, as well and have worries about it returning, and hold all the other fears that accompany ANY kind of cancer diagnosis.

My philosophy is that we're all in this life together and it's our responsibility to help others through it. In your efforts to do that by supporting those with mbc by getting the information out there, be careful that you do not offend or fault those of us who have been fortunate enough to have their cancer caught earlier. I have met women with mbc. They didn't throw a pity party at me because I wasn't in the same place as them. Let me repeat, kudos to you for your efforts because someone will benefit from it. But give credit to those who (including the Komen foundation) put great efforts out to give awareness to breast cancer. I wonder where we would be without that. Would it be better if only mbc got attention? If that's the case, then it seems that there would be more cases of mbc since many women would NOT be diagnosed at an earlier stage.

If you don't want to wear pink, don't wear pink. Don't buy the trinkets. I don't. Just as I don't buy all the sports trinkets. I'm spending my money on things that give me joy in life and maybe hope to others. If I choose to wear pink it is only to bring awareness. Education is important, as well as fund raising for research.

Before I close, allow me to add one more statistic to your's. It is a guarantee, no question at all that 100% of ALL people will die. . . .at some point. In the meantime, I choose to live.

Bless you for allowing all these comments to come your way. DON'T GIVE UP YOUR CAUSE! I only hope your aren't as unhappy as your letters appear to convey. That would be sad.

ladyg's picture
ladyg
Posts: 1577
Joined: Apr 2010

the "pink" thing. I have shirts, a purse, a braclet and today I picked up a pink ribbon pin at the medical building where my surgeon is. I am a survivor and proud of it!

Hugs,
Georgia

lowenjuls
Posts: 18
Joined: Jul 2012

When I was first diagnosed I couldnt wear pink or look at pink. Now after a year of treatment I have just begun to wear a support bracelette, pink ribbon ball cap and an occasional cause tshirt. My feelings changed from I refuse to be a walking poster child for BC to by God I fought my heart out and have been through hell and back and I survived..... IDK I just feel protective of 'us' and pink in some way now.

Black and orange (and purple and green) is great for Halloween and I love decorating....I have to admit though, this year I put a pink tutu on my life size skeleton LOL

Hugs to all, Juls

SIROD's picture
SIROD
Posts: 2121
Joined: Jun 2010

Dear ladies,

I am not saying that you should shun pink except to “think before you pink”. A lot of the money that you might believe goes towards research doesn’t when purchasing "Pink October" items. If you feel like making a donation make certain that the group you choose will be using every $1.00 for research.

Have you ever checked out where all the billions of dollars raised for breast cancer goes? "Awareness", what planet do the people who have not heard of breast cancer reside on? Most people are so "aware" of breast cancer celebration they believe the disease has a cure.

If everyone would “think before they pink” and gave their money towards research maybe by the time 30% of you will be stage IV, they might really have something that will keep you alive for decades and maybe that illusive cure.

Isn’t this what you want to see happen than buying a lot pink item ?

Doris

mamolady's picture
mamolady
Posts: 795
Joined: May 2011

Doris,
As much as everyone knows about BC, they still don't realize that women are still dying from BC. When my sister died at 43 years old in 2005, my sister in law said "I didn't know people still died from breast cancer".
Because so many survive, most people know someone that has beaten the beast. Even I did not know anyone who died from BC til my sister. I had known lots of women that survived BC, I still do.
Now I do what I can to educate people. Alot of people think that since I finished treatment, I don't need to worry about the beast. God willing, they are right. In reality, who knows.
I do "think before I pink" as much as I can, but I always have something pink!

Cindy

Jean 0609's picture
Jean 0609
Posts: 2318
Joined: Jun 2010

Pink is my new favorite color and I wear it proudly, especially in October. Will be doing the ACS Strides Walk as well as the Susan G. Komen walk both this month. Check out the "PINK" eye on my expressions page.

xxxx,
Jean

Rague
Posts: 3277
Joined: Aug 2009

I hate the color PINK and have never worn it since I was old enough to choose my clothes - until after my DX.

Yes I do hate those who use (Oct) BC to profit but I do believe that the more exposure there is - the better. Hubby and Son wear their "Tough Enough To Wear Pink" bracelets 24/7/365. It is amazing how many times they are asked about it and how many who they gave my number to have called me for info. It's also amazing how many men will ask other men questionns when they see one who is proud enough to show support their loved one.

Certainly some of the ads do infer less than the truth BUT anything that raises thought is good as far as I am concerned. Is all the info 100% factual - clearly NO.

If only one person is ecuacted ^ that's great.

mamolady's picture
mamolady
Posts: 795
Joined: May 2011

Robert,
Thanks for reminding me that men are part of the awareness this month too! I posted an article about the drummer from KISS on my FB page. I also found this one.

http://www.huffingtonpost.com/2010/09/17/exkiss-drummer-raises-mon_n_721101.html

I have been an advocate for BC since my sister died in 2005. That is part of the reason I do mammograms for a living. Because of that, I have way more pink than I ever thought was possible. Now that I am a survivor, not much has changed in that respect. I have my Av's, Brett Farve and Bronko's pink ribbon tops to wear to work this month. It is hard to have to switch to Halloween too. But since I work in the mammo dept, I can wear pink ribbon anytime!

I purchase all of my pink tees from www.thebreastcancersite.com. They even have a "made in the USA section". So aside from helping fund mammos for women that can't afford it, I can support the US economy.

Cindy

Frankie Shannon
Posts: 457
Joined: Oct 2011

Robert i wish you a very happy birthday now encase i'm not on the 7th.I have a pink ribbon tattoo on my chest so i always have one, plus i do have other pink cloths i wear which my children have gotten for me as they are very proud of me being a survivor and where with me every step of the way.Have a great weekend.Hope you are doing okay.
Hugs Frankie

CypressCynthia's picture
CypressCynthia
Posts: 3926
Joined: Oct 2009

I am so happy that you are here to represent men! There are too few on our board and I know there are many suffering out there. One of the pediatricians I work with has a family riddled with only male breast cancer.

Some hate the pink, but I am for anything at all that brings awareness. It is my habit to also make a donation to cancer research in October.

Getting out my pink outfit now :-)

SIROD's picture
SIROD
Posts: 2121
Joined: Jun 2010

CC,

There is a new movement that is asking for "Awareness of Metastatic Breast Cancer", the only one that is terminal. I do hope that your donation goes to Metativors or MBCN, or a group that are fighting for us, those with stage IV.

You might be interested on how much the Komen Foundation gives to education and how little in comparison it gives to research. You might want to read their brochure a little closer and notices that there is no mention of those who have stage IV. They are now for the first time using Ads for MBC. A new source of revenue, perhaps?

A good read is “Pink Ribbon Blues”, I highly recommend it.

Doris

survivorbc09
Posts: 4378
Joined: Jun 2009

I first want to say Happy Birthday to you Robert, so, HAPPY BIRTHDAY! And, I also want to say that your intent on this post, or I thought, was about pink, pink for bc. Somewhere it seemed to take a wrong turn, in my opinion. I don't care what company or what store uses pink. If it makes even ONE person aware of breast cancer, then it is worth it, in my opinion. You know why? Because that one person might be a woman who had put off getting a mammogram, and, it might make her go get one and it could save her life! Turning October to Pink is to bring attention to breast cancer. Yes, breast cancer period! Not stage 0, stage 1, stage 2, stage 3, or, stage 4...just breast cancer.

Also, we are all terminal...every single person on this earth is. We are all going to die. It could be from cancer, it could be from a car accident, a bad reaction to meds, walking across the street, some other disease, it could be a heart attack, it could be fighting in a war...who knows?

Pink October can only do good! I've been approached many times because I might be wearing my pink survivor bracelet or pink watch or one of my tops. Usually, it is a survivor, but, many times it is someone who has had their life touched by someone with bc. Like most of you, I am 100% behind the pink, even if I don't like the color. And, thanks Robert for your good intentions by posting this. Real men do wear pink!

Sorry Robert, but, I just had to get this off my chest.

Hugs, Jan

Bella Luna's picture
Bella Luna
Posts: 1571
Joined: Aug 2009

For me the meaning of pink has changed. Before being diagnosed, I only thought of it as a color. My daughter, when she was in preschool and kindergarten, loved pink and wanted to wear it every single day!

When I was diagnosed with breast cancer, I didn't want anything to do with pink because I didn't want to associate with anything connected with cancer. As someone already mentioned, I didn't want to be a poster child for breast cancer.

It's been 3 years since being diagnosed and now I view pink in a new light. I see it as having great STRENGTH! I have attended two Revlon Run/Walk events and found it inspirational and moving. I went to celebrate me and to pay tribute to the ones who have fallen and who are battling. I also contribute to causes that strive to find a cure(s).

Lastly,

Happy Birthday to You, Robert!
Wishing you your hearts desire and more on your
special day and the many to follow!

Double Whammy's picture
Double Whammy
Posts: 2267
Joined: Jun 2010

I have such mixed feelings about October. I wish it was used more to educate the public about breast cancer. I guess all the pink hype is the way to raise money, tho and I'm for raising money, but too many businesses use it as an opportunity to sell their stuff. I just bought mushrooms with a pink ribbon! Good grief! I'm so happy there are so many survivors and I'm all for celebrating our survivorship, but October has become one big pink party and breast cancer is serious business.

I will be sitting outside Safeway a few times this month distributing literature for the WeCARE Peer Navigator program. Safeway sponsors this program. It is a very good program. We are not collecting $$, just recruiting volunteers (survivors) and educating the public about the program in case there is someone in need. It's giving, not taking. But people race to their cars to avoid us because they think we want $$ and they've been approached almost everywhere to give, give, give. That is sad.

I attended a fundraiser last night. It was fun and proceeds went to a good organization that provides some financial assistance for screening and testing for uninsured. It's a small organization and I think the money does go where it says it will. I met some lovely people and had a nice time.

We could give on every corner and attend an event every night of the month in October.
Race for the Cure is in May and there are other breast cancer events in months other than October. It isn't just October.

So much $$ is collected for breast cancer. Where does it all go?

My dear Pinks, did you know that last month was gynecologic cancer awareness month? It was also childhood cancer awareness month, prostate cancer awareness month, thyroid cancer awareness month, leukemia and lymphoma awareness month. How much did you hear about any of these cancers? I did see some ads on CNN about gyn cancers, but nothing else anywhere. I also had a phone solilcitation to give to childhood cancer. That's all I experienced in September and I looked.

I had uterine cancer (the "good" kind). I lost a wonderful friend in June to uterine cancer (the "bad" kind). Another good friend who was dx'd the same time I was (2.5 years ago), has a recurrence of her uterine cancer (also the "bad" kind). She's having chemo again. Yet we hear practically nothing about gyn cancers. Occasionally something about ovarian.

Just bothers me. I don't have an answer. I do support October, it's just a little much.

Suzanne

PS I am wearing my pink bracelet this month.

SIROD's picture
SIROD
Posts: 2121
Joined: Jun 2010

Dear Bella Luna,

Please read the essay by Laura Wells who also has a story about “Pink”. She is stage IV now, a wife, and a mother of 3 daughters. Her essay is on the MBCN page but I first read it on one of the other sites I visit daily. It was written "In honor of the women who are fighting and the women we are losing".

Laura’s essay is title “Beyond Pink” and it really is well worth reading. Copy and paste the following:

http://mbcnbuzz.wordpress.com/2012/09/17/beyond-pink/

Doris

Rague
Posts: 3277
Joined: Aug 2009

I hate the color pink and have for as long as I can remember. I never wore pink once I was old enough to have a say in what I wore. Basically I still do not wear pink almost all the time. That said - I do sometimes if I'm going somehwere that I might be able to talk to someone with questions. I did yesterday when I went to some classes for women on some outdoor 'stuff'. I wore my pink ribbon poncho (of course LE sleeve and glove too). I had several nice 'chats' between classes with different women who had queations. (Had some pamphlets to hand out too.) I am ready to talk with anyone who is asking any honest questions. I hate it that some do use October/Pink/BC for their own gains but if only one woman or man gets info - that's better than them not getting it.

Hubby and Son wear their pink 'Tough Enough To Wear Pink' bracelets all the time. Quite a few times there have been men who ask them questions. Some just want to be able to talk to a man, some have actually called me to talk.

I am (in some ways a VERY private person) but when it comes BC - I'm a VERY open person if I can help/educate someone to me it makes sense to be open.

Winyan - The Popwer Within

Susan

mom62
Posts: 600
Joined: Mar 2004

Robert,

First let me wish you a Happy Birthday. My grandmother's birthday was on the 7th and my son who will be twenty this year has his on the 8th. Regarding the whole "pink" thing I think it is great that BC is so widely known by the color pink. It creates awarness, although I wish all cancers could be covered by one color. I find no harm in pink. I love watching football with grown tough men wearing pink shoes. October is the month I was diagnosed so I appreciate the color pink as I was never a Halloween fan. I am stage 4 by the way and didn't even know we had our own "date" as it were. I don't think that is what is important. I like to remind everyone to get their mammogram and do self exams. Thats what it means to me. Thanks for letting me share and HAPPY BIRTHDAY! I hope you have a great day.

((hugs))
Terry

SIROD's picture
SIROD
Posts: 2121
Joined: Jun 2010

Komen Ads Overstate Benefits Of Mammograms, Professors Charge
TOPICS: DELIVERY OF CARE, WOMEN'S HEALTH, PUBLIC HEALTH

AUG 03, 2012

Two Dartmouth health policy experts criticize the national breast cancer charity for using misleading statistics to promote breast cancer screening.

Medpage Today: BMJ OpEd Says Komen Ads False
The world's largest breast cancer charity used misleading statistics and deceptive statements about mammography to promote breast cancer awareness and screening, authors of an opinion piece asserted. In promotional material for the 2011 Breast Cancer Awareness Month, Susan G. Komen for the Cure suggested large differences in breast cancer survival among women who undergo screening mammography and those who do not. Specifically, the advertisement stated a 5-year survival of 98% when breast cancer is caught early and 23% when it is not. … "This benefit of mammography looks so big that it is hard to imagine why anyone would forgo screening. She'd have to be crazy," Steven Woloshin, MD, and Lisa M. Schwartz, MD, of the Department of Veterans Affairs Medical Center in White River Junction, Vt. and the Dartmouth Institute for Health Policy and Clinical Practice in Lebanon, N.H., wrote in an article published online in BMJ (Bankhead, 8/2).

CNN: Professors: Komen Overstating Benefits Of Mammograms

A national breast cancer charity is being accused of using misleading statistics to convince women to have mammograms, according to a paper published Thursday in the British Medical Journal. Susan G. Komen for the Cure's mammography campaign during breast cancer awareness month last October has come under fire from professors Steven Woloshin and Lisa Schwartz at the Dartmouth Institute for Health Policy and Clinical Practice, who say the foundation overstated the benefits of the procedure and totally ignored the risks. "The ad implies that mammograms have a huge effect, but the only evidence that they use is the five-year survival rate for breast cancer when caught early is 98% and when it's not, 23%," Woloshin said. "The problem is that in the context of screening survival, statistics are meaningless" (Young, 8/3).

This is part of Kaiser Health News' Daily Report - a summary of health policy coverage from more than 300 news organizations. The full summary of the day's news can be found here and you can sign up for e-mail subscriptions to the Daily Report here. In addition, our staff of reporters and correspondents file original stories each day, which you can find on our home page.

http://www.kaiserhealthnews.org/Daily-Reports/2012/August/03/komen-ads.aspx

http://now.dartmouth.edu/2012/08/professors-komen-overstating-benefits-of-mammograms-cnn/

Not all breast cancer is found by mammograms, lobular, inflammatory....

laughs_a_lot's picture
laughs_a_lot
Posts: 1368
Joined: Mar 2011

I know that there are sites that will tell people how much money goes to the cause and how much is caught up in administrative costs. My computer is not the best but perhaps if someone who has a better one could come up with a web address then those of us who are going to do something pink would at least have a chance of doing some good with our efforts. I feel that we do vote (so to say) with our dollars. Not big on pink but big on the cause.

SIROD's picture
SIROD
Posts: 2121
Joined: Jun 2010

Dear Laughs_a_lot,

One place that you can make a donation is METAvivor. All the money goes to research.

They explain their mission a lot better than I could.

http://www.metavivor.org

Best,

Doris

mom62
Posts: 600
Joined: Mar 2004

Doris,

I don't think it was fair that you took over Roberts positive posting to make it your own. It's nothing personal but I don't think it was right. You should have started a different post if you were going to go on and on about Stage IV BC. That is not what his post was about. It felt more like a downpour. I'm sorry your suffering with stage IV. I will put you in my prayers tonight.

Terry

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

I think most of us feel the same way you do Terry. It wasn't right.

You did start a good post Robert, so, thanks!

Rague
Posts: 3277
Joined: Aug 2009

AMEN!

It is so sad that there are some whose only goal is to spread their negativity to all.

Winyan - The Powser Within

Susan

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

And AMEN also!

SIROD's picture
SIROD
Posts: 2121
Joined: Jun 2010

With the skill and dedication of Susan Davis and Shirley Mertz, we had Advocacy Day. They organized an advocacy team to travel to Washington, DC to speak with members of the U.S. Senate and House of Representatives to educate them and bring awareness of our unique issues living with metastatic disease. As a result, Metastatic Breast Cancer Awareness Day was proclaimed on a NATIONAL level!

http://mbcn.org/developing-awareness/category/house-resolution-senate-resolution/#senate

This movement continues to spread - with Canada and the UK also recognizing their metastatic population with similar proclamations.

We held our third National Conference at Dana-Farber Cancer Institute, in Boston, MA, hosted by Dr. Eric Winer. It was such a fabulous success that we returned five months later to fill the auditorium for "Open Conversations on Metastatic Breast Cancer," with Drs. Winer, Nancy Lynn and Ian Krop. Two weeks later, we filled the MSK auditorium in New York City, when Larry Norton hosted us for an afternoon discussion about metastatic breast cancer.

To help support our national membership, and in response to requests, we gathered information from our members on metastatic support groups across the country - they are few and far between. To keep our members informed, we continually post news relevant to the metastatic population. To better educate our membership, we post videos and audios from our conferences and offer our brochure free. To help develop awareness of the disease, we continue to offer our metastatic t-shirts and MBCN attends conferences where we have the opportunity to distribute our materials and speak with medical professionals and other breast cancer groups.

SIROD's picture
SIROD
Posts: 2121
Joined: Jun 2010

Ok you win!

Rague
Posts: 3277
Joined: Aug 2009

It's not 'winning /losng', It's having our experiences and telling about them. It is respecting that all others do not have the same life experiences that any of us have had (seriously doubt that when you were in grades 1 you had to be escorted home from school by a tank - I did more than once). I readily/thankfully say I'm 3 yrs post DX, I am still NED with IBC. We ( who have already been through a lot) have so much that we can offer to those just starting down the path. I know only between 1% and 5% are IBC so not a lot 'out there' but we have been through TX so do have some knowledge of what TX can caause that we can pass on. No - I'm not Stage IV (yet) but that does not negate me and my thoughts/beliefs. I can respect others with different beliefs BUT only if they are willing to show that while they may disagree, they are willing to respecxt mine.

It's not 'winning/losing' - it's reapecting and accepting that not all 'march in lock step' with any ofus.

Winyan - The Power Within

Susan

PS - IF you reply to this you are showing you are a 'survivor' as you are still alive.

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

say color the world pink if it gets the attention of someone who needs to get a mammogram, someone who felt a lump, but, doesn't know what to do, or, someone who hasn't been doing breast self exam. Making October pink is just what Robert said in his opening, it's for breast cancer awareness!

Happy birthday to you Robert!

Sue :)

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

Terry, I couldn't agree with you more!

Sue :)

jnl's picture
jnl
Posts: 3873
Joined: May 2009

I've got my pink hat out, my pink bc shirt and I think it is so great that October is dedicated to bring awareness for breast cancer.

PINK is the color of the month!

Hugs, Leeza

sbmly53
Posts: 1466
Joined: Jan 2010

At first, I kind of avoided pink - I just didn't want to be reminded of having cancer. But I realized that it is very necessary to bring awareness to those who might not think it could happen to them. I was one of those people. Now, I 've got my pink on.

No one should question anyone who chooses to do this. No one should be put down. No one should have a patronizing, holier-than-thou attitude. No one. We all have the right to an opinion, but that's as far as it should go.

Thank you, Robert, for helping to bring awareness and for supporting our brothers and sisters under the pink umbrella.

Sue

butterflylvr's picture
butterflylvr
Posts: 943
Joined: Apr 2011

I have to unload ~

Sirod, you have been nothing but ignorant and insulting to most of those who have responded in this thread. Why is it your words and beliefs are so much mightier then ours? You have stage IV cancer to which I am sorry. I would never wish that on my worst enemy, but somewhere along your journey you lost your compassion for others dear sister.

This post was started as a beautiful thread from Robert showing his brotherly support and pride in wearing the color pink and proud to be doing so. And you turned it into a platform to preach about the bad sides of pink awareness month. Give us a little credit dear sister, we know this is the month that businesses and organizations make money off of the color pink, we aren't that stupid. We also don't need you preaching for your specific cancer research organization. God bless them for being there, and it sounds like you found strength in finding them and for that I am happy.

Robert, myself and other pinks sisters and brothers earned the right to wear pink. We are survivors and for me I wear my breast cancer angel pin every day and I do so proudly. I like being the one who's like an open book. Publicly I've shared my journey with others from day one, in hopes of being there for someone who feels they are battling breast cancer alone. You wouldn't believe the people that have called me their angel. So I... my dear sister wear my pink proudly. And don't you dare tell me I've never experienced the "DARK" side of cancer. Tell me what part of cancer is ever in the light side.

Vent away... I'm ready.
Your sister in pink ... Lorrie

rjjj's picture
rjjj
Posts: 1826
Joined: Jan 2009

i would too believe that people have called you their angel. I believe all my pink sisters are strong and beautiful angels :-) I also wear my survivor pin with pride...and used to think i didn't look good in pink until i became a BC survivor Now it suits me just fine! I wear my pink with pride. even have hot florescent pink shoes i wear to work giving me the opportunity to tell all who tell me they like them... why i love to wear them in Oct.

I wish all my pink sisters and brothers a great Oct. wear your pink with pride so you can be the light that shines for so many newly diagnosed ...giving them hope...as you all gave to me when i was new. I Love and pray for everyone of you and pray for a cure each night.
xxxooo
Jackie

Kat11's picture
Kat11
Posts: 1931
Joined: May 2009

What happened to the CSN that I knew and loved. I am so sadden to read all of this, What happened to all the positive know matter what stage we were.I do realize we move on with our journeys. I must tell you, in 2009 when I was DX. I was in a panic and I found this site it was my whole life. The women ( except for Joe at the time )were my life and my life savers. Dear, Dear Pammy had us laughing so hard with her surgery story that went on for days. There was never any real negative to speak of. We were sister, Yes Pink Sister's. We have lost many of our beloved Sisters in the last few years. We have also met some wonderful New ones. Once we even had a party line phone set up by CSN and we all got to talk one morning, that was so much fun, do you guys who are still on this remember that. Thats the CSN I remember. So I do not post all the time, but I love CSN, I love Pink and I love you guys. Sorry I had to put my 2 cents in.
Kathy <3

weazer's picture
weazer
Posts: 440
Joined: Mar 2010

I second everything you just said Kathy!
I joined in 2010 I always wished that I would of known about this board when I was going through my treatments.
There are so many possitive and Kind and Loving Sister and Brothers.
It sadens me too see such negativity on here.
Karie

Rague
Posts: 3277
Joined: Aug 2009

Seeing a big change here. It has changed so much. Many of those who were a wealth of info and humor no longer come and it is so sad that those who are just coming are not getting the support and warmth that those of us who came years ago were so blessed to have had.

As it seems to me - it's been a bit over a year since the decline started but is snowballing now. (Wonder how bad it will get once the 'winter blues/cabin fever sets in later?) I have wondered at times if some of the trolls we have outed in the past are not back but playing a more educated. 'game'? I don't know but I do know it is not the supportive (in all ways) home it was in Aug '09. If it then had been as it is today - wouldn't have stayed at all. BUT I'm sure that with work and understanding that we are each unique and that "One Size Does NOT Fit All" - never has - NEVER will it can be again.

Winyan - The Power Within

Susan

mmontero38's picture
mmontero38
Posts: 1523
Joined: Dec 2007

I agree with you ladies. I haven't posted in a long time because this negativity amongst us is not a good thing. When I first joined CSN, I was enveloped in my Pink Sisters cyber hugs. They cried with me, laughed with me and answered my numerous questions. Two of the first Pink Sisters to welcome me was Chenheart and Re. With time I got to know many other dear sisters, some unfortunately are no longer with us.

I'm very hurt with the way this board has turned. Seems like some of us have lost respect for others. We all have our different opinions and whether we like it or not.....respecting each others opinions is extremely important. We have all fought our demons, and to me it doesn't matter what stage you are, it really isn't relevant....the beast has touched you also.

Some of us have gone through grueling chemo, others only radiation and yet others both. Some of us will have to go through chemo all our lives....to me it doesn't matter. We've all been to the dark side and whether you are stage 0 or stage 4, the FEAR of recurrence is there and will most probably never go away.

Whether research is funded 100% or 50%, what matters is awareness, education in early detection and support. And this site is all about SUPPORT....after all NO ONE knows better what we are going through than our own Pink Sisters and Brothers.

Robert, I'm very sorry that this thread turned into an attack on Pink rather than focusing on your birthday and the fact that we are very happy to celebrate another year here. I'm hoping that we will still be here 50 years from now celebrating more birthdays.

rjjj's picture
rjjj
Posts: 1826
Joined: Jan 2009

I got caught up on Pink and forgot to wish you a Happy Birthday! That is what we all hope and pray for is many many more Birthdays, I haven't been to CSN for awhile and am so Happy to see that some of you still come here. I agree Lili...that i drew so much comfort, hope, strenghth and yes lots of good laughs with real friends that i could count on and still can :-) right here on CSN I love you all and I am so very sorry that there is negativity. That is not what this is for. Fear and anger can make us draw closer rather than distance us. There is strength in numbers & I do believe that each one of you are brave and courageous warriors. I admire and respect you all.
God Bless,
Jackie

carriesoup's picture
carriesoup
Posts: 144
Joined: Sep 2010

i just typed up a half page email and then decided to erase it. not worth my precious words! all i can say is that negativity is a disease worse than cancer. right on my pink sisters! love you :)

ps- i haven't been on in a long, long time. i prefer to use our facebook page. a positive, fun experience! i just felt like i needed to show my presence today after the things i've heard.

pss happy belated birthday robert!! *hugs*

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