I'm so Pissed!

I just need to vent--I'm so frustrated--I have done all I can think of to do to get the word out in my area--this month I have passed out symptom cards, contacted all the local news agencies asking for coverage of OVCA month, written to every female local newspaper reporter asking for an article, written to Oprah (again), tried to contact Dr. Oz about his new show, worn my teal toes faithfully (all summer) and complained to ACS about no teal ribbon on their website and gotten the same stock answer as so many others-heck if they can't do teal just do purple for all cancers--but no it's PINK apparently the ONLY color! No response from any of them!!! But all those things don't compare to how angry I am that I just went to the ACS website and it actually says,"in the fight against BREAST cancer, birthdays represent progress" Well I just wrote them another nasty letter--I believe in the fight against ANY cancer birthdays mean progress--Hell if you're still alive, isn't that progress--It just really got to me tonight, because today is MY birthday and I consider the fact that I'm still here to send them a nasty note--that's progress!! It makes me wonder why I am involved in Relay each year--pretty soon that will probably be Relay for Breast Cancer Life--I'm sure I will not get a response to this email I sent---sorry ladies. but this really got to me and I just need to vent--excuse my language-
NancyT

By momanderson920
Posted September 21, 2009 at 8:29 am
Report post

I am totally with you. I don't begrudge Breast and other cancers, but this obsession with breast has gotten beyond ridiculous. You would think it was the only cancer anyone gets and it has tons of survivors to campaign for it since the prognosis is very good thanks to all the money they receive. Write your Congressmen since they base grants on number of people afflicted and NOT prognosis. My mother died of small cell lung cancer, another killer, and there are few clinical trials and hardly any money spent on it compared to nonsmall cell. I just don't understand the mindset. PLUS ovarian can be cured if caught early and is a silent cancer unlike breast where you can feel a lump. I tried to get somewhere with ACS and did not either. Called the Cancer Action Network as advised, an arm of ACS and never got a callback. That shows how much they care. And the line I got was that there is something on their site about ovarian, but as I told the lady, it is not front and center like the Breast Cancer Relay up top with color but a worded article mixed in with everything else. One way we could make the point is to tell them we won't donate if they don't quit playing favorites.

By momanderson920
Posted September 21, 2009 at 8:30 am
Report post

One thought is to find out the President of ACS and write them in mass, not talk to some lower level phone person with no authority. That is what we should do...I will try and find it and post it.

By momanderson920
Posted September 21, 2009 at 8:34 am
Report post

John R. Seffrin, PhD, is the President of ACS International and Isabel Mortara, UICC Executive Director of ACS
Here is the link to their Board of Directors if you want to complain about their lack of coverage on their web page of Ovarian cancer and our one month of attention. We also need to be mindful of our sister cancers.....uterine, etc. They don't get attention either. I would think you could write them at the ACS address.
http://www.cancer.org/docroot/AA/content/AA_1_5_National_Board_of_Directors .asp

By FavoriteAunt
Posted September 21, 2009 at 8:52 am
Report post

Right you are!

I walked into my own cancer for treatment on Friday and found a huge sign saying "September is Prostate Cancer Awareness Month." Can't they share the spare? I'm angry and will tell someone about it.

By Ovacom06
Posted September 21, 2009 at 10:51 am
Report post

Happy Birthday!!! We have to keep SHOUTING until our voices are heard. We all need to get pissed and use that energy to get the word out. Keep passing out symptom cards keep calling news stations, the ACS and writing news paper editors. SHOUT until we get hoarse!!!!!!!!!!!!!!!!

By beau-bella
Posted September 21, 2009 at 11:21 am
Report post

A little ray of hope from Canada. This year the Weekend to End Breast Cancer, a two day 60 km walk to raise awareness and funds for research for the Campbell Institute @ Princess Margaret Hospital was renamed the Weekend to End all Women's Cancers. I thought this was a big step forward, given that I share many of your concerns about the high profile for Breast Cancer and not for OVCA and others. This is a big leap forward and will continue from now on. I believe enough people, including hospital advocates spoke up and hopefully it is a sign of things to come.
Here's to more birthdays and celebrations.

By SONGBIRD49
Posted September 21, 2009 at 11:32 am
Report post

Happy Birthday Miss Survivor :), I got a phone call yesterday morning from a girl soliciting for Breast Cancer funding. I hestitated but could not pass up saying "you know what? I am fighting Ovarian Cancer and when you are ready to call for that, call back" followed with I don't need your response to be "I'm sorry" but rather "I will". There was a walk for Ovarian Cancer Awareness in my area last week (Philadelphia) and I don't remember if they raised their goal but I had to ask ... how can we walk with the fatigue of chemo we take year around? I had to offer to sit at the table and pass our data instead.

By EMteal
Posted September 21, 2009 at 11:38 am
Report post

I share your frustration. I was diagnosed 7 years ago at age 40 with Stage 3B ovarian cancer in Sept. of all months. At that time I had no idea that Sept. was ovarian cancer awareness month. During the last 7 years I have been diagnosed twice with breast cancer but I NEVER wear pink! My color is and always will be TEAL! My husband and I are part of a local awareness organization in Cleveland, Ohio called OROC, OutRun Ovarian Cancer hoping to spread the word about ovarian cancer. www.oroc.org

By Laurel-J
Posted September 21, 2009 at 12:09 pm
Report post

It's a new day Nancy, but happy belated birthday nontheless. We could learn a lot of how the pink ribbon campaign became so successful. If we could build on that framework, I truly believe we could have the same name/ribbon recognition as the pink ribbon. I don't really begrudge the Komen machine as they've brought the pink ribbon to light as did Lance Armstrong with the yellow ribbon.

I'm a survivor like you, advocate just like you but also find it perpelexing we don't have better recognition. I suppose we need to start at the top. The OCNA is an organization already in place, perhaps they can give all us willing workers some guidance.

By bldrluck
Posted September 21, 2009 at 12:13 pm
Report post

Hi all - I've been sharing your frustration this month, well, actually for the last year, about the state of funding for cancer research for anything BUT breast cancer. First - it's a shame that the fundraising is not shared for all cancer research. How would you like to have an extremely rare cancer and realize that there is very little money going to research for you at all? But, my other thought, is: if you can't beat 'em, join 'em. I think we should be lobbying the breast cancer foundations to share the wealth for women's cancers in general. The number of breast cancer survivors who get ovarian cancer is large, as is the reverse. The BRCA genes play a part in both cancers. Chemo drugs are very similar. So - send a letter to the Susan G Komen foundation asking for them to support gynecological cancer research. They DO have the money and have an incredible fundraising network in place!

By Jennali
Posted September 21, 2009 at 2:35 pm
Report post

I can't help feeling that part of the widespread color of pink is due to the obsession with breasts in our culture. T-shirts have little risque sayings like "Save the ta-tas" or "Save first base." Ovaries and uteruses and fallopian tubes just don't have that sexy aura that is ascribed to breasts.

I don't begrudge a single dime of breast cancer money. There is both in my family, and a good chance I carry the BRCA gene. I just want equal billing, especially since many women fight both cancers. It would be nice if ovarian were presented as a sister disease.

I think we gotta fight from the trenches, each of us doing what we can to raise awareness. Let's channel our anger into constructive energy.

By HelloKitty3
Posted September 21, 2009 at 3:52 pm
Report post

I totally agree with you!!!! A few weeks ago I did a Ovarian race/walk. Do you know where I founf the information about it? On a table in the corner at the library!!! But just this past weekend the 10 year kick off for 'Sing for the Cure' a concert that tells stories of Breast cancer survivors and those who didn't survive was done in our town. I tought October was Breast cancer month? My girlfieds mother passed away from Ovarian cancer and there were 4 of us that wore our teal ribbons on the show to support not only breast cancer but also Ovarian and for that matter any cancer. We were asked to remove our pins and only wear 'pink'. I have nothing against pink, I just believe that there needs to be more awareness againt all cancers not just breast. More and more women are becoming victims of Ovarian and Cerviacl cancers. I can feel you frustration and anger, we just all need to continue to fight and speak out!!!!

By shela
Posted September 21, 2009 at 7:38 pm
Report post

Happy B-day. I'm not wowed by Oprah either. However, if you want to celebrate your B-day & support OVCA at the same time, look at my journal entry re: retail therapy & Loehmann's; it's the 1st journal entry I have launched. Again buy something in teal;
Shela

By ChiMom
Posted September 21, 2009 at 8:23 pm
Report post

Happy Birthday. Don't get discouraged. I know how frustrating it can be when you don't even get a response but we must channel that energy into positive energy. One step at a time. We are making strides, just not as quickly as we would like. We are not going to change ACS and really, I don't give a flying hoot about them. We need our own voice and Kelly Ripka is doing that for us as other smaller names are joining the fight. It takes time and effort and we just need to keep forging forward. If we work together, we can do it. As for oprah, and Dr. Oz, I think their scripts are written ahead of time. We just need more spokespersons like Kelly Ripka, maybe someone who has been personally affected by this deadly disease, to help promote out cause. Maybe we can find someone on Twitter that would be willing to carry the torch. Just don't give up.

By verlinda
Posted September 21, 2009 at 10:07 pm
Report post

Belated happy birthday!

The pink ribbon became popular when people with political clout became personally involved with breast cancer through selves, family, or friends having the disease.

The big difference is that there are so many, many more survivors who have the energy to campaign and give testimonies.

I think not only is our society obsessed with breasts; I think the fact that ovarian cancer is perceived as an "older woman's" cancer also affects the willingness for sponsors to promote our cause. (I know it's not just older women; sadly, still many of our doctors don't realize that and don't think of testing it for our younger women!)

By southerngal
Posted September 22, 2009 at 12:12 am
Report post

NancyT -- HAPPY BIRTHDAY!!!! Each birthday is such a landmark after an ovarian cancer diagnosis.

Remember, there are 10 times women diagnosed with breast cancer each year than with ovarian cancer, so the sheer numbers provide the "squeaky wheel".

Our American Cancer Society in Birmingham, AL provides our GYN Support group a free place to meet monthly and also provides soft drinks. They also have a great Look Great....Feel Better program. I'm glad they are here to support us on our day to day strugggles. WE can get the word out.

As far as the Relay for Life and whether to participate, maybe you would like to participate in something directly related to ovarian cancer. We have Ovarian Cycle and a MotherWalk to raise money for ovarian cancer research (see the Norma Livingston Ovarian Cancer Foundation). Our state also has the first ovarian cancer automobile tag. Turn your anger into action.

Welcome to Inspire!

Explore topics in this discussion:

20 replies

Add to the discussion

OCNA on Twitter

Group leaders

You