CSN Login
Members Online: 16

This is FANTASTIC

NoTimeForCancer
Posts: 461
Joined: Mar 2013

Hi ladies, I posted this on the Uterine board but thought you all would enjoy as well if you didn't stroll over to that page. I love this and hope you all enjoy this too.

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/

Alexandra's picture
Alexandra
Posts: 1220
Joined: Jul 2012

I put the table below together using numbers from "NCI 2012 funding by cancer type". This is to compare spending on breast and gynecological cancers research. I'm not showing numbers for other cancers, but if anyone is interested I can email you the whole spreadsheet.

As you can see research spend per new diagnosis for breast cancer ($2,570) and gyno cancers ($2,230) is comparable. For cervical and ovarian cancer new diagnosis spend is twice as high as for breast cancer. However gyno cancers, especially ovarian, are much deadlier than breast cancer. Spend per death from breast cancer ($15,060) is double the spend per death from gyno cancers ($7,280). 

NCI Funded Research 2012 2013 estimate      
Category Name Total Funded Amount  New cases   Deaths  Death/dx $1,000/dx $1,000/death
Cervical Cancer  $               72,605,018         12,340        4,030 33%  $         5.88  $        18.02
Breast  $             602,728,719       234,580      40,030 17%  $         2.57  $        15.06
Ovarian Cancer  $             111,657,265         22,240      14,030 63%  $         5.02  $          7.96
Uterine  $               19,097,333         49,560        8,190 17%  $         0.39  $          2.33
Vaginal + Vulvar  $                 1,019,544          7,590        1,830 24%  $         0.13  $          0.56
Gyno cancers combined  $             204,379,160         91,730      28,080 31%  $         2.23  $          7.28

With so much hype over breast cancer, people automatically assume that's what you have. When I went back to work I had a few guys compliment me on how real my boobs look. Remember Seinfeld "they are real and they are spectacular!"

I am a little nauseos from the oversaturation of pink ribbons on anything and everything. No offence to "pink sisters".

I think I already wrote about "Breast Cancer" toilet paper with little pink flowers that looked blood red in the bowl and thus catapulted my husband to have a long-overdue colonoscopy. At least something good came out of it because 1) doctors confirmed that his head was not up there and 2) they found and removed a polyp, hopefully benign.

NoTimeForCancer
Posts: 461
Joined: Mar 2013

Thank you, Alexandra!

Why am I NOT surprised!!!  You are such a great data-miner!  I found Tranette and have been in email contact with her.  She asked how did I find her article and to re-post it on twitter.  I am not into all that social media but I know one our sisters out here must be, and all of us should copy and send it to all our female and MALE friends!

The NFL makes October their "pink" month, but maybe they can love the entire female population for all our cancers.  It is worth a shot to write to Commissioner Goodell.  The worst he can say is no, the same way Susan G. Komen said "no" to me already. 

lovesanimals's picture
lovesanimals
Posts: 1248
Joined: Sep 2011

for the information and statistics on "below the belt" women's cancers.  I've tried to do my part with the dialogue.  With my job, I happen to be in a position to know a lot of different people throughout my state.  After I was diagnosed, I literally announced the news during a statewide teleconference because I knew I didn't want to keep my cancer a secret.  Everybody has a mother or sister or grandmother or daughter or female relative or friend, and I wanted (and still want) my experience to be used as a resource for other women who may end up on a similar journey.  Before my co-worker recently retired, she also used her own experience with uterine cancer to spread the word about the symptoms she experienced, the tests she underwent, and the treatment she endured with her "below the belt" cancer.

Kelly

mamuna
Posts: 1
Joined: Aug 2013

Hello Kelly,

I read your post and noticed that you aim at spreading the word about ovarian cancer and fighting the disease. I recently set up an online platform in the UK called Can-Did.org, which aims to connect people who have been diagnosed with cancer to those who have successfully fought the illness. Can-Did is a place to share successful stories, connect with like-minded people or just express thoughts on the topic. In the past few years I increased my awareness of cancer. After my grandma was diagnosed with lung cancer 3 years ago I started to see more and more cases of people in her situation around me. Unfortunately, it is often situations like this that open your eyes. Three of my closest friends were affected by a close member of their family suffering from the disease. Due to the nature of the disease some of them survived, some of them did not. However, there is one common thing I noticed: the need to talk. The need to share information, experiences, pain and hope. The need to connect with someone who knows what you are talking about and who is going through something similar. The need to hear what to expect, how to fight and what the options are. In Bulgaria, where I am from, little information is given to patients when they are diagnosed with cancer. Sufferers and their relatives or friends that know little about the disease are often uncertain of what could be done. I was lucky to hear many stories of people who have successfully fought cancer but my grandma wasn’t. She had grown up with the belief that cancer is a terminal disease and that nothing could be done to survive. Not knowing anyone in her situation didn’t help either. This led to her psychological breakdown and eventually end. I want to prevent this happening to more people. I want to make sure that NOBODY goes through this alone and NOBODY gives up due to lack of information or uncertainty of ways to beat cancer. That's why I created Can-Did - to connect people, regardless of whether they are sufferers, survivors, supporters or just believers that cancer can be beaten. The website is still at its initial stage and I am trying to spread the word about it and encourage more people to share their stories and show others that they CAN beat cancer just like they DID.

I was wondering if you would like to register on the website and write a few sentences about your fight with cancer. People will be interested to hear something from a cancer survivor.

To access the website, you can go to: www.can-did.org

Please, let me know if you've got any questions.

And if you know anyone else who would like to contribute, please pass this forward - this will be greatly appreciated!

Thanks in advance!

 

Best Regards,

 

Jeny

Alexandra's picture
Alexandra
Posts: 1220
Joined: Jul 2012

Dr. Harness and Dr. Janicek discuss Angelina Jolie's recent decision to have a double mastectomy, and discuss ovarian cancer and how it can and should be prevented in BRCA positive patients.

http://www.youtube.com/watch?v=Pnkc8JlaZGQ

123Miley's picture
123Miley
Posts: 94
Joined: Jan 2013

My sister is actually a 10 year breast cancer survivor.  She has done it all - the 3 mile walks, has the funny t-shirts etc.  And she is even a little "over" the focus on breast cancer - and not just because of me and my ovarian cancer diagnosis.  She focuses more now on American Cancer Society Relay for Life and other events focused on all cancers.  I am also in Dallas/Fort Worth area - home of Susan G Komen. So we hear a lot about it - good and bad.  She put breast cancer on the map for sure. 

People assume I have breast cancer and even when they know I don't they are all dialed in on pink.  I have received pink riding gloves, pink scarves and pink t-shirts etc as motivational gifts from well wishers.  I LOVE pink by the way and all gifts are welcomed and appreciated for the thought that is behind them.  I would never "correct" any of the well meaning gift givers!

I show horses and a few years ago my breeds state club started having a "Power of Pink" show to raise money and awareness for breast cancer (like they need either one).  When planning for the first one a friend of mine spoke up (mostly but not totally on my behalf) and suggested they do something for cancer in general - and tried to point out the many members that we have - both male and female that have battled cancer - and like me, because it was part of what kept us going,  showed up bald and almost too weak to stand for long periods of time to show their horses.  Shouldn't we recognize them too?  But they stuck with the power of pink theme - have bra decorating contests etc to raise money etc.  And what came of my friends suggestion?  Each year I get a pink corsage and my name appears on the pink and black banner with the other breast cancer survivors - LOL!  Can I just say it makes me feel really awkard being the - well "non breast cancer token survivor".  What about the other memebers I know that have battled, uterine, colon and prostate cancer?  But they do mean well and have raised a lot of money for the Carity Foundation which is a great organization.  

Breast cancer is just, well sexier (please don't take the wrong), for the lack of a better term and easier to market. My husband said to my doctor one day a few years ago - "Man Dr Messing what are we going to do?  They even have pink yogurt lids now!!!"  LOL!

It is a numbers game for sure.  So many more women are effected by breast cancer each year.  And I am tremendously sensitive to the tremendous visible physical changes that it brings for women and how that effects all aspects of their life.  And, well, breast cancer is just a lot more fun to support. Again please don't take that wrong.  Nothing about cancer is fun - most of you know what I mean.  But - bra decorating contests, slogans like:

"Save the ta-ta's".  

"I can give you one - ok two good reasons",  

"Yes these are fake.  My real ones tried to kill me."

Etc, etc.  

What are we going to say?  I will tell you what my husband says (and its crude):  

"Well at our house we're all about the vagina!"  True but it just doesn't have the same ring to it.  And medically speaking I actually have ovarian cancer - but I guess he just thinks "vagina" sounds better!  Uh oh there goes that marketing thing again!

I like the term "Below the Belt."  I think it has real potential! 

 

NoTimeForCancer
Posts: 461
Joined: Mar 2013

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 Uterine, 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. 
Rosamond M
Posts: 86
Joined: Apr 2013

  Two weeks ago I attended a Breast Cancer Forum held in the city close to where  I live.This Forum was attended by approximately 250 women.The Chairwoman of the Forum, who is a wonderful woman, has done great work for Breast Cancer in our area. I had written a poem titled "The Whispering One". I was asked to recite the poem to the the Forum. It received a huge round of applause and I was told it was extremely relevant to the audience.  

I agree that all Cancers need our support and assistance but I find the whole range of Cancers is too diverse for me to concentrate on. I decided that because my personal knowledge is of Ovarian Cancer it is the one that I would concentrate on and try to get the word out to as many women as possible regarding the symptoms and the need for a reliable screening test. I have always supported,and always will, all other Cancer  events and requests for donations.

I  acknowledge the need to include all "Below the Belt Cancer" women in my future writings. 

 

 

 

 

ConnieSW's picture
ConnieSW
Posts: 583
Joined: Jun 2012

Rosamond, thankyou for including my cancer in the future.  I was treated for UPSC, an uncommon type of uterine cancer that I had never heard of before despite being an RN for 45 years.  I do my best to tell people my sx and to encourage them to have annual paps despite the current guidelines.  Although notconsidered diagnostic, it picked up some abnormal cells for me.  I shudder to think of the consequences had it not.  It meant the difference between an early and late diagnosis for me.  

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network