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FANTASTIC ARTICLE - PLZ SHARE WITH YOUR FRIENDS

NoTimeForCancer
Posts: 394
Joined: Mar 2013

News Release: A Call to Action on Behalf of Women with Below the Belt Cancer

We know women’s lives are saved when we look at cancer through a pink lens. How many more could be saved if we included all the colors representing cancers unique to women?

Each year, some 90,000 women are diagnosed with “below the belt” cancers; cervical, ovarian, uterine/endometrial, vaginal and vulvar. They all have a story. But most have no place to tell it. They are all waging the difficult and very personal battle to live, and many will not find the resources they need. The Foundation for Women’s Cancer is working to change that.

We recently received a letter written by a gynecologic cancer survivor. In it, she calls into question the lack of dialogue and support for women with below the belt cancer. As we move closer to September, Gynecologic Cancer Awareness Month, and November’s National Race to End Women’s Cancer, we are sharing this letter as a call to action. It is our hope that others will join us and step up this conversation, so critical to women’s health.

Baby, You Got the Wrong Color of Cancer
By Tranette Ledford

In May, when news broke of Angelina Jolie’s preventive surgery, it intensified the spotlight on breast cancer. A few of those rays spilled onto the subject of ovarian cancer. I’m betting thousands of women took notice of the latter.

Breakthroughs that provide predictive information mean lives will be saved. After all, stealth is cancer’s signature. For most women, however, the experience of cancer begins with diagnosis. What follows is the shock and awe of medical warfare: surgery, chemo, radiation. The way through is lined with a host of painful and exhausting procedures. But there’s another challenge for women who don’t have breast cancer. They’re not going to get the same support as their counterparts in pink.

There’s a hierarchy of C-diagnoses, and in it, breast cancer reigns. There are shirts and scarves, ribbons and arm bands, awareness days, special events and races across the country. As there should be. But women with gynecologic cancer often find themselves on the sidelines, benchwarmers in a terrible game, cheering on the heroes but largely unrecognized.

Don’t get me wrong. I run for the pink and champion the cause. I now count four brave and beautiful friends in various stages of recovery. I’m grateful for all the resources available to them; support groups designed specifically for their needs, access to information about treatment complications and options for discounted medical services. Their illness is studied more and funded most. They’re getting the best. And they deserve it. As do women with women’s cancer.

During recovery, my friends with breast cancer tried hard to include me in the various resources to which they turned. But we found a vacuum between us. We learned about financial support for the uninsured. I’m grateful I didn’t need it, as it was only available for breast cancer survivors. We went to survivor exercise classes, free for breast cancer survivors and also designed for upper body recovery. We went to a nutrition class, but learned it did not address the dietary needs of women who’ve undergone pelvic area radiation therapy. Finally, one of my friends turned to me and said, “Baby, you got the wrong color of cancer.”

At the time, I laughed. But increasingly, I saw it as a dangerous truth. Take the issue of Lymphedema, a disorder acquired by damage to the lymphatic system. Cancer treatment is the largest single cause of this condition. Most breast cancer patients are warned about it. But women with women’s cancer too often learn about it only after they acquire it. Like me, they had no information and thus, took no precautions. Why is this dialogue missing?

Absolutely nothing should be taken away from the pink — but we need to broaden the palette. If we’ve learned anything from the focus on breast cancer it is this: When we look at cancer through rose colored glasses, we save thousands of lives. We might save thousands more if we look through a stained glass window swirling with all the colors representing women’s cancer. That would be a beautiful and inclusive picture of sisterhood. It would yield more resources for women desperate for assistance. More support. More doctors and radiologists better informing their patients. And the sounds coming from that picture? Lots and lots of dialogue – the most critical ingredient for inspiring change.

If we truly want to support healthy women as a course of action, we need to support all women with cancer, no matter the color.

http://www.foundationforwomenscancer.org/news-release-a-call-to-action-on-behalf-of-women-with-below-the-belt-cancer/

RoseyR
Posts: 462
Joined: Feb 2011

Of course we sympathize we our sisters who have breast cancer--the more visible and publicized form of the Big C.

But all who are fighting "below the belt cancer" deserve equal research and recognition.

Do we have concrete ideas about how to promote this vital cause?

 

Rosey R 

NoTimeForCancer
Posts: 394
Joined: Mar 2013

RoseyR,

First, share the above (I updated it so it is easier to read - it was one large block mess!) with all your friends and ask them to share it with their friends.  And please, not just your female friends but our male friends as well! 

We are sisters, friends, wives, aunts, cousins, neices and more.  The Foundation for Women's Cancer has a November RACE just for us!!!!  Form a team, support a team, all our friends need to know about this.  A very good friend of mine, male, helps on a breast cancer awareness golf tournament everyday.  I will CHALLENGE HIM to make it a WOMEN'S CANCER tourney.  There is no reason half the money can't go to some other women's cancers. 

If you are a person who knows how to twitter, send it.  I found and contact Tranette, the woman who wrote this and she feels the same way.  HOW DO WE GET THIS OUT?!  I told her I would post this on the ACS discussion board but we have to talk about our cancer.

I recently visited my 87 year old mother and had on my "Uterine Cancer Warrior" t-shirt.  She asked if I was going out like that and I said, "Yep!  They wear everything for breast cancer and I'm not ashamed of my cancer".  She doesn't know what to do with me anyways. 

Yes, we need a VOICE.  We are STRONG!!!

Double Whammy's picture
Double Whammy
Posts: 2259
Joined: Jun 2010

Thanks for this.  It expresses how I feel.  As a survivor of both breast and endometrial cancers, I have experienced the contrast in awareness and funding..  I guess I was "lucky" to have both at the same time becasue I was able to learn of resources and support for breast cancer and my endo cancer could sort of tag along.  My gyn onc always keeps track of my breast cancer and my med onc always asks about my endo cancer, but the rest of the world only remembers that I had breast cancer.  I think it's because it's in their face all the time.  Even the coverage of Angelina Jolie's mastectomy primarily emphasized her breast cancer risk and barely mentioned her risk of ovarian cancer.   

I volunteer as a peer navigator for newly diagnosed cancer patients.  To date, I have only had breast cancer patients to help (and I'm happy to do it).  For reasons unknown to me, the gyn cancer part of the program can't get its act together.  In fact, my good friend who is a UPSC survivor and a wonderful woman dropped out because they never had a patient for her to work with and even tho she would volunteer to help with breast cancer activities, she was always told no because she was not a bc survivor.  I guess she had the wrong color of ribbon, too!    I sent the manager this article and suggested maybe some publicity could be done during the month of September.   We'll see how that goes.  The breast cancer part of the program gets funding.  Think that has anyhing to do with it?   Pisses me off.

Suzanne  

maggie10
Posts: 1
Joined: Jul 2013

Hi Rosey R

 

I'm Tranette - the writer of the article.  I'm so glad you are standing with us!  In order to promote greater conversation and dialogue, we have to keep pushing the subject on social media.  Twitter is probably the best way - then facebook.  The more we tweet the link to the article on the foundation's website,   http://bit.ly/pqZYYD to people who are in positions to offer discussion, the more chance it will get talked about.  We sent it to women leaders, reporters and magazines this week, and we'll keep doing that.  Thank you for your support. Wishing you the best!

HellieC
Posts: 425
Joined: Nov 2010

Although I am in the UK, we have exactly the same issues with the recognition of "below the belt" cancers, so I'm happy to share this.

Helen

NoTimeForCancer
Posts: 394
Joined: Mar 2013

When I worked on a political campaign a few years back, the candidate always said, "If not me? who? If not now? when?" I think WE have to be the voice.  WE need to brain storm and WE can make some noise. 

I posted this on the Ovarian chat board and they feel the same way!!!  I am going email Tranette and tell about all you wonderful women.  We all CHAT here but other than chatting with eachother we need to have a dialogue with the WORLD.

Posting it on Facebook CAN mean it would go around the world.  Six degrees of separation?  It is true.  You all have voices and I cannot accept that I have survived this battle, beat this devil, to sit, watch and hope other people speak up. 

I know this isn't for everyone, that's ok, for anyone who is interested I will keep you posted.

Have a fantastic day warriors. 

 

Double Whammy's picture
Double Whammy
Posts: 2259
Joined: Jun 2010

who raised awareness about brast cancer.  Women can do this too. 

 

NoTimeForCancer
Posts: 394
Joined: Mar 2013

Double Whammy,

We ALL can do something.  We can email the local television stations and contact the health beat reporter do a piece in September on Women's Gynecological Cancer.  Ladies, this is OUR cancer.  I will ask the Ovarian, Cervical and Other Gynecological Cancer women to do the same.  You could consider using something like this:

 

Dear (reporter),
I realize this is a little long but I ask that you hang in there with me.  As a (name your cancer) cancer survivor please read the piece below and consider devoting your Health Beat piece for September on Women's Gynecological Cancers.
 
Thank you in advance for your time.
(name)
 
(you the piece below, and if there is a character limit provide the the link below)
http://www.foundationforwomenscancer.org/news-release-a-call-to-action-on-behalf-of-women-with-below-the-belt-cancer/
 

News Release: A Call to Action on Behalf of Women with Below the Belt Cancer

Ribbons for website-7.18.13
We know women’s lives are saved when we look at cancer through a pink lens. How many more could be saved if we included all the colors representing cancers unique to women?
 
Each year, some 90,000 women are diagnosed with “below the belt” cancers; cervical, ovarian, uterine/endometrial, vaginal and vulvar. They all have a story. But most have no place to tell it.  They are all waging the difficult and very personal battle to live, and many will not find the resources they need. The Foundation for Women’s Cancer is working to change that.
 
We recently received a letter written by a gynecologic cancer survivor. In it, she calls into question the lack of dialogue and support for women with below the belt cancer. As we move closer to September, Gynecologic Cancer Awareness Month, and November’s National Race to End Women’s Cancer, we are sharing this letter as a call to action. It is our hope that others will join us and step up this conversation, so critical to women’s health.
 
Baby, You Got the Wrong Color of Cancer
By Tranette Ledford 
 
In May, when news broke of Angelina Jolie’s preventive surgery, it intensified the spotlight on breast cancer.  A few of those rays spilled onto the subject of ovarian cancer.  I’m betting thousands of women took notice of the latter.
 
Breakthroughs that provide predictive information mean lives will be saved. After all, stealth is cancer’s signature. For most women, however, the experience of cancer begins with diagnosis.  What follows is the shock and awe of medical warfare: surgery, chemo, radiation. The way through is lined with a host of painful and exhausting procedures. But there’s another challenge for women who don’t have breast cancer. They’re not going to get the same support as their counterparts in pink.
 
There’s a hierarchy of C-diagnoses, and in it, breast cancer reigns. There are shirts and scarves, ribbons and arm bands, awareness days, special events and races across the country. As there should be. But women with gynecologic cancer often find themselves on the sidelines, benchwarmers in a terrible game, cheering on the heroes but largely unrecognized.
 
Don’t get me wrong. I run for the pink and champion the cause. I now count four brave and beautiful friends in various stages of recovery. I’m grateful for all the resources available to them; support groups designed specifically for their needs, access to information about treatment complications and options for discounted medical services. Their illness is studied more and funded most. They’re getting the best. And they deserve it. As do women with women’s cancer.
 
During recovery, my friends with breast cancer tried hard to include me in the various resources to which they turned.  But we found a vacuum between us. We learned about financial support for the uninsured.  I’m grateful I didn’t need it, as it was only available for breast cancer survivors.  We went to survivor exercise classes, free for breast cancer survivors and also designed for upper body recovery. We went to a nutrition class, but learned it did not address the dietary needs of women who’ve undergone pelvic area radiation therapy. Finally, one of my friends turned to me and said, “Baby, you got the wrong color of cancer.”
 
At the time, I laughed. But increasingly, I saw it as a dangerous truth. Take the issue of Lymphedema, a disorder acquired by damage to the lymphatic system. Cancer treatment is the largest single cause of this condition. Most breast cancer patients are warned about it. But women with women’s cancer too often learn about it only after they acquire it. Like me, they had no information and thus, took no precautions. Why is this dialogue missing?
 
 Absolutely nothing should be taken away from the pink — but we need to broaden the palette. If we’ve learned anything from the focus on breast cancer it is this: When we look at cancer through rose colored glasses, we save thousands of lives. We might save thousands more if we look through a stained glass window swirling with all the colors representing women’s cancer. That would be a beautiful and inclusive picture of sisterhood. It would yield more resources for women desperate for assistance. More support. More doctors and radiologists better informing their patients.  And the sounds coming from that picture? Lots and lots of dialogue – the most critical ingredient for inspiring change.
 
If we truly want to support healthy women as a course of action, we need to support all women with cancer, no matter the color. 
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