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It irks me

laughingnikki
  • By laughingnikki
  • Posted September 30, 2008 at 5:19 pm · 47 replies
  • Shared with the public
6 Recommendations

I wrote a whole long entry earlier and something happened and it didn't save nor did it post.

So, here is the jist.

I'm irked that Oprah is having a huge show on breast cancer! I mean REALLY IRKED....she just went to a break saying "knowledge is power" what the doctors don't even know about OVCA! We have no test, no huge backing from the government or races or......you fill in the blank.

What do we do? Who do we call?

grrr...i wish i didn't care!
nikki

Explore topics in this journal entry and replies:

Cancer Chemotherapy Prostate cancer Cervical cancer Breast cancer Ovarian cancer

47 replies

zircons

We could all bombard Oprah with emails and ask her why she does not even mention ovarian cancer. No one does. I don't know what to do either. I cannot find any ovarian cancer organization that wants my help, they all want money. They should get together and do awareness. I think I will let all the womens' organizations in my area know that I am willing to speak about ovarian cancer. Then, at least I would be spreading the word.

laughingnikki

I just emailed Oprah, this is what I said.

Dear Oprah,

I'm sitting here watching your show today about breast cancer. I am saddend, because this show aired on the last day of September and September is National Ovarian Cancer Awareness month. DId you know that the color of Ovarian cancer is teal? I would venture to guess the answer to that question is no, as most people don't know that either. Do you know that this year, 20,000 women will hear the words, You have ovarian cancer and more than 15,000 of those women will die? Did you know that there is NO prescreening test for ovarian cancer? Did you know that most women, at the time of diagnosis are at least a stage 4? Did you know that for every woman that died from ovarian cancer the federal goverment spent about $7,500 on ovarian cancer research and that for every woman that died from breast cancer the federal government spent about $18.000 in research. Seems a bit unbalanced!

So, I say to you, does a celebrity like Christina Applegate have to be diagnosised before a light is shined on this terrible disease. This terrible disease that has taken my life dreams away, at the age of 33. I see these young women that have fought breast cancer, talking about having kids after chemo, that is not an option for me. Early detection wasn't an option for me. They talk about how important early detection is, perhaps with more money for research that will be come an option.

So, with tears in my eyes, I beg you to find a segment of your show to talk about Ovarian Cancer. I know many many woman that will feel validated in their fight to just have it acknowledged if only for 10 minutes.

Trying to BREAK THE SILENCE,
Nikki Deacon

Who knows, these notes probably get deleted. At least it's out there.

n

PamRn

That is great Nikki!!! Give us the e-mail address please so we can all SHOUT together! Everybody please take part. Anybody got any ideas about other good shows we could bombard with messages? I guess we gotta do this ourselves!

FavoriteAunt

Nikki,
This is very well said so good for you. I'll try to find the e-mail address and do the same thing. Maybe if Oprah realizes that SHE is also vulnerable to the silent ovca, she might do something. She does have an audience and that surely would help.

I get so frustrated. Yesterday (still Sept.) I was at the bank and there is a big breast cancer drive; I was at the pharmacy, same thing; last weekend in the supermarket with the pink M&M's... I don't know. Maybe the disease doesn't affect enough people to get noticed. Gilda Radner certainly let it be known. And even though an occasional celebrity might do some charity event, it seems to then vanish. Somehow women have to realize that they could also get ovca - but most don't think about it or even seem to know about it. Very frustrating.

PattyKey

Way to go Nikki.
Will you let us know the e-mail address you used. I'm not very good at searching out those things.

Cindy809

I applaud you ladies for getting the word out. I also feel that these ladies also have cancer and they are fighting as hard as we are. I think a lot of ladies who carry the gene know all about us. This morning while watching the today show there was a segment about breast cancer. This month it will be difficult for us to watch because so much attention (pink) will be given to them. I know of at least 5 women that have both cancers. I'm going to wear pink this month to support them. On the Oprah show the doctor mentioned Ovarian breifly. Even though there are more ladies that get breast cancer the ratio of the amount of deaths that occur for ovarian is higher. I tried to come away from the show with a positive attiude. The faster they find a cure for breast cancer will benefit ovarian. We OVCA patients have a higher rate of getting breast cancer than the average women. So even though it seems unfair it will be to our advantage if a cure is found. If a cure is found more attention and money will come our way for women's cancers. Unfortunatly in our situation majority rules. We'll get our chance as we keep going forward and getting the word out. Remember the old saying about the squeaky wheel?

kla

I was trying to write a poem about this ,So far all I've got is . Pretty and pink . It does stink.I get teal and it's just as real. Let me shout.Get it out .Teal is real. And so am I.Long way to go but it's a start.
I worked for a company that employs mostly women & they were all over breast cancer,but nada on ovca .Was a real big push for there to be no charge for mamogram and in fact a $25 check for getting one ,but no push for a Ca 125 which most insurance companies won't pay for.In fact if you want to get really angry.The Feds. Will pay for a mans psa but not a womens ca 125. The tests have the same false negative problems,but no test for women.
Silly me I love getting my Ca 125 ,finally the bloody insurance company is paying for the bloody thing.

laughingnikki

I know when I talk about this I often think, oh you are just saying, oh poor me. I receive the note about finding a cure for breast cancer would bring about more money for female cancers in general. Here's something I read yesterday:

2008 stats

BrCa diagnosis approx 184,000 (both men and women)
BrCa deaths approx 45,000 (both men and women)

OvCa diagnosis approx 20,000
OvCa deaths approx 15,500

those stats are INCREDIBLE and how can those be ignored?

I have to stop. They need support too.
Trying not to be a 3 year old!
n

Lemona

I'm sending something to Oprah as we speak. The other day the American Cancer Society called me for a donation. I politely told them no, that my donations go directly to Ovarian Cancer research, and then I gave them a little lecture about not focusing on OvCa is September, our Awareness Month! I'll bet I'm off their list! :)

momanderson920

Since getting cancer and going to the American Cancer Society I have gotten numerous calls from the Breast Cancer fundraising organizations. It makes me angry in that they had to have gotten my name from ACS. Where else? I will donate directly to American Cancer Society as well. And the Today show plus our local channel did something on breast this week. I thought this was Ovarian cancer month???? What is up with that? I am really disappointed with Oprah. Breast cancer has a very good prognosis and survival rates. Not so with us and no attention. This makes me mad, too. PLUS did you know that Congress gives more money to breast cancer since they base the research funding on numbers with the disease, not death rate. I called and complained about it to my representatives. Call yours to make your voice heard on this.

momanderson920

I meant to say "directly to Ovarian cancer research" not American Cancer Society.

PamRn

Nikki and other friends
I sent this to www.ovationsforthecure.com and got this great email back. I also sent Oprah a long message, no reply yet.

From: Pam Kilgore [mailto:pamkilgore@rocketmail.com]
Sent: Wednesday, October 01, 2008 3:22 PM
To: info@ovationsforthecure.org
Subject: teal awareness

"Please go to www.inspire.com and read the discussion entitled, "It irks me" Ovarian cancer survivors are really getting fired up and we need some suggestions. Thanks for your help.
Pam



Pam – I am passing this around to the office to see what people come back with. We did put a PSA out in September, we had billboards, we did as much as we could. We are trying Pam – I promise you that. And eventually everyone will listen to us.

In the meantime, I am personally blasting this email to everyone I know.

Susan
Susan@ovationsforthecure.org

IowaSister

What's Oprah's email address? did I miss it in this thread? Or did you send via local affiliate carrying her sydicated show? Thx

nancyt

laughingnikki
just wanted you to know I'm as pissed as you ---the day I saw Oprah I posted this message on the john hopkins web board lots of angry women agreed--let's all write O again!!!

Hello All- I don't post often, but do read (daily) and comment (occasionally) and find great hope and encouragement in this board--thanks! I was dxed. in May 2005 (3A) and am currently receiving gemzar/carbo for my first recurrence--as a matter of fact I just got home from my third round of chemo this afternoon--(can't wait for the side effects to kick in tomorrow :()So I was just going to relax and watch Oprah and big surprise she's kickin' in October a little early and doing a show(9/30) dressed in pink for her kick off to breast cancer awareness month with Christina Applegate from Samantha Who? on tv to talk about her own struggle with breast cancer--ironically Christina is dressed in teal! We did get one mention though--Christina's oncologist did mention women BRCA 1 or 2 have upwards of a 40% chance of developing ovarian cancer-no response from Oprah--now Susan Kohman's sister is on talking about how we have to raise awareness of breast cancer-- Anyway--I jst found it somehow ironic and I guess I just needed to vent about how unfair it is--it's not breast cancer vs. ovarian but I just wish we could get the word out for hope and survivorship for this horrible disease--and I know I and so many of you have written to Oprah every year in hopes of her doing a show for us--thanks for letting me vent and hopefully understanding my frustration--let's stay hopeful-Nancy T.

anitaama

I agree. It irks me too. I just emailed her and asked everyone in my other support group (Daily Strength) to email her too. Maybe everyone here should email her too. Maybe she will hear if we all do it.

www.oprah.com

treeshouse

I think we need also to put pressure on the american cancer society. I am an unpaid lobbyist (advocate for my congressional district) I have been racking my brain on how to attack this. I almost want to talk to the komen center about them helping us start an ovarian cancer awareness campaign. They have it down. That center has been key in raising awareness with product marketing and such and the run/walks. They have the money and the visibility. I would just like info on how they started etc....It was grassroots and that is exactly what I do for the american cancer society. I will be taking to the grassroots lead about ovca. There was a recent bill proposed (HB 6791) it wants to create a cancer trust fund for early detection and prevention. Perhaps a campaign around that. It is just so overwhelming but we have to start somewhere. My advice to all is to contact your local American Cancer Society and get to the grassroots manager. Each state has one. I will find the names and numbers for each state and post it here. That is where the relay for life starts - all of that action. We need to put pressure on the advocates like my self and the grassroots manager for an awareness campaign in our states. They did it with breast cancer, cervical cancer and prostate cancer- now it is our turn! ACS is the biggest lobbyist for cancer funding. That is how you get hooked up with legislators who are supportive. We as advocates have relationships with our senators and reps. They know us by name after a while. It is great to get celebrities, that helps for the awareness, but we need legislation and funding to get this all started. Getting the ear of an advocate or grassroots person is vital in starting a campaign with the ACS. There were 500 of us for lobby day in DC last week. We had appointments with our elected officials and we asked for them to approve HB 6791 among other things. I focused on ovca, since that was my experience. I brought a few aids to tears with my story about early detection and how I was told I was crazy and I didn't have cancer because I "am too young for cancer"........All of us have a story- Let's try to get this started...Give me a few days to get the list of state advocate leads and staff grassroots. Check out the cancer action network on the ACS website. That is what I belong to, out motto is "ordinary people taking extraordinary measures to fight back against cancer" Also for 10.00 on the website you can become a acs-can member for a year and you will get an e mail every time a cancer related bill or health care bill comes up. You then just hit forward and add your personal story. It goes to your elected officials for you district and state. It takes minutes, and it is a way to keep in front of our elected officials. A way to tell them how we feel. If we are consistent with our message maybe we can get somewhere- our message?- save us from dying. we want the same access to care and early detection. Early detection saves lives- that is a fact. I shouldn't have been told I am stressed out and too young for cancer- what is a good age for cancer?????? We need to get mad! Give me a few days to gather the info for all of the states. Sorry about the length of my e mail......T

treeshouse

Also here is the ovca appropriations info, this is actually going on right now!

Ovarian Cancer Action Network
DoD Ovarian Cancer Research Program Receives an Increase in Appropriations

More Info
Advocates' work leads to 100% increase in Ovarian Cancer Research Program

Spending Bill Includes $20 Million for
Department of Defense Ovarian Cancer Research Program


OCTOBER 1, 2008 (WASHINGTON, DC): On September 30, President Bush signed a funding measure which included $20 million for the Department of Defense (DoD) Ovarian Cancer Research Program. This is an amazing accomplishment for the advocates and partners who have been fighting for an increase in federal funding for the past six years. Earlier in 2008, the House of Representatives draft bill contained $25 million in Fiscal Year 2009 (FY09) to the DoD Ovarian Cancer Research Program to help maintain current research and expand innovative investigations into early detection and screening tools. While $20 million is not the full $25 originally requested, the ovarian cancer community is pleased that Congress has recognized the importance of the DoD program and the need for increased funds for ovarian cancer research.

Since 1997, the DoD has had a Congressionally Directed Medical Research Program to eliminate ovarian cancer - the Ovarian Cancer Research Program. The Ovarian Cancer Research Program is a peer-reviewed and highly competitive bid program. In 2008, the DoD program was only able to award approximately 17 of the 250 scored grants on the $10 million appropriation. Since 2004, this program has received $10 million per year to fulfill its goal of eliminating ovarian cancer by stimulating and supporting innovative, multidisciplinary research efforts that will lead to better understanding, detection, diagnosis, prevention and control of ovarian cancer. The accomplishments of this fund include:

* Researchers discovered biomarkers for early stage ovarian cancer
* Development of animal models to study ovarian cancer
* Discovery of biomarkers that predict survival
* Establishment of tissue repository and registry
* Published 164 papers in gynecology oncology
* Discovery of the type of cells that control ovarian cancer
* Understanding of platinum drug uptake, which will be used to address chemotherapy resistance

"The Ovarian Cancer National Alliance is very pleased with the $20 million appropriation," says Karen Orloff Kaplan, Sc.D. Chief Executive Officer of OCNA. "This money serves as a life line to ovarian cancer research and provides medical scientists and professionals the resources they need to help find an early detection test and eventually, a cure."

More research and funding for ovarian cancer are essential because diagnosing the disease is so daunting; only 20% of women diagnosed are in Stage I. In the more than 30 years since the War on Cancer was declared, ovarian cancer mortality rates have not significantly improved. About 22,000 American women will be diagnosed with ovarian cancer in 2008 and 15,000 women will die from the disease.

Congress plays an integral role in the DoD program by maintaining the structure of the Ovarian Cancer Research Program as an independent, site-specific, dedicated research. Furthermore, Congress determines the appropriations level each year.

"The DoD's $20 million dollar appropriation comes at a time when the House and Senate just passed Awareness Resolutions officially proclaiming September as ovarian cancer awareness month," says Cara Tenenbaum, Senior Policy Director of OCNA. "Capitol Hill is making large and small milestones toward the fight against ovarian cancer and we look forward to working with Congress to keep the momentum going."
The Ovarian Cancer Action Network is a program of the Ovarian Cancer National Alliance
910 – 17th Street, N.W. • Suite 1190 • Washington, DC 20006
Telephone: 202-331-1332 • FAX: 202-331-2292
http://www.ovariancancer.org

Ricki

Hello...I have been reading all these emails after watching Oprah on Tuesday and wishing and hoping teal was as popular as pink. Three cheers for treeshouse in pointing out the recent legislation passed to increase research funding for ovarian cancer!! Let's not forget Johanna's Law and Gina's Law and the recent national concensus on ovarian cancer signs and symptoms.
I must stop and remind myself Susan G Komen was founded in 1978 while NOCC was established in 1995 and Ovarian Cancer Alliance founded in 1997 which makes us 20 years "younger" in the fight for awareness, education and a screening test for early detection. Since my diagnosis in March 2006 I have noticed a significant increase in information about ovarian cancer signs. symptoms, treatment and research funding. Is it at the level I want? No, but it is making the news now and has some celebrity backers. Am I again going to email Oprah pleading to do a segment on ovarian cancer? Yes, and I might even do that once a month just in hoeps that someday someone in her corporate office will bring it to her attention. In the meantime I will continue to support and work with my NOCC chapter and a program called "survivors Teaching Students" as well as local community health fairs speaking to anyone I can about ovarian cancer. Our first 5K walk/run for ovarian cancer had about 500 participants!! I always wear my teal bracelet and I also wear a pink bracelet for those sisters whose lives have also been changed by cancer. The mission of NOCC is my mission and together we can move forward to make a difference in the lives of women everywhere for I believe there is nothing that can stop women with a mission! Blessings to all!

sockmonkey83

Count me in on emailing Oprah! And who knows, we may NOT receive a reply of any sort on this, but at least we're trying! There's strength in numbers.

KBB

Dear Nikki~
Read my reply to Lemona's discussion, "My Letter to Oprah". I'm too tired to retype it!
In Hope, KBB (Kathy)

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