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awareness

bonniesue
Posts: 126
Joined: Apr 2009

I have been thinking about the lack of awareness in uterine cancer. Women think hey my pap smear is good, all is good. There is a lot of sufferring with this surprise diagnosis even though it is the most common female cancer. Women need to be mobilized for earlier detection. Anybody have the same feelings. Need to be shouting and having a commercial on tv with signs, symptoms, etc. Doctors do not even seem to know much about it. One doc said that because there has been a decrease in hysterectomies it has been more prevalent. Any ideas?

aprillorey's picture
aprillorey
Posts: 104
Joined: Apr 2010

Yes i fully agree with you on this one.as im 29 but my bleeding started when i was 24 the clots the pain for years the doctor told me it was just a bleeding disorder that i had to wait it out yet i never knew when i my real period came as i bleed all of the time i had no ideal about cancer in the Urtaus or the signs of it at all i felt somthing was wrong with my own body i had many paps that said i was OK and fine and my hormons always came back fine so they said nothing was wrong with me

it wasnt until the bleeding got so bad i oh most lost my LIFE was rushed to the ER after husband called 911 and had to get blood Transfusions to save my life that the doctor orderd a D&C on me and found the cancer

i was aware of overan cancer and cervical cancer but had no ideal about Urtaus cancer the signs of it or anything .

so i fully agree there needs to be TV adds and also walks in all 50 states for this cancer and lots of awareness for it

i had to do so much research after i found out i had the cancer as the dr didnt expilan it alot to me took me forever to fine out the awareness ribbon is peach but yet u cant by the ribbons at a store at all

i think one ideal is maybe alot of us woman could write our state Senator and try to get a bill past for a day to bring awareness for it

maybe contact news places to see if your allowed to air your story about it on the news contact

if NBC ABC AND CBC and others to ask about airing a add for it on TV through i know this will cost

so we need to do a walk in all 50 states to raise money and funds for the awareness so woman need to band together for sure

those are my ideals

post stuff on your face books or websites online and make people aware this way set up a group in your home and then post flyers stuff like that not sure if those ideals is good

but we need to bring awareness for sure

:)

aprillorey's picture
aprillorey
Posts: 104
Joined: Apr 2010

ALSO we need to make people aware that it doesnt just hit those who are 55 and over like most doctors think and researchers say i am and many people here are living proof of that we need to tell girls and warn them about this cancer from a young age

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

I firmly believe we need to let know women they are at risk. I emailed Oprah; hoping that she could have a show and unite us (wouldn't it be fun to meet?) and really talk about the different types of uterine cancer and how hard they are to detect. I agree that with fewer hysterectomies we are seeing more cancer now.

We also need more research. I know Fran Drescher gave some publicity to the problem but I think she had endometriod (early) stage. We need awareness about all the different types one can get. Susan Komen did so much for breast cancer and that's what we need.

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Uterine cancer has perhaps been so long associated with all those hysterectomies that for decades were almost the 'norm' for women past child-bearing years and a great op to line the pockets of those surgeons. Only now with retained uteri are we faced with so many new cancers along with the increasing numbers of all cancers at younger and younger ages.

Breast cancer got a major presence with Susan Komen and all things 'pink', then ovarian cancer was brought to the forefront with Gilda Radnor and the teal warriors. Is there room out there now for our cause???? I often feel like the forgotten step-child of those with women's cancers. At times, I feel uninformed people just think it's something older women 'get' - and no big deal. As if!!!!

The sad thing is, we can't do monthly breast exams, or have regular mammograms, even pap smears rarely prompt the diagnosis -- we are just living fairly normal lives and out of the blue we are hit up side the head and our lives are turned upside down. And frequently the diagnosis is made at stage 3 or 4! Also, there is much less of a stigma for any woman, young or old, to require a hysterectomy than a mastectomy. When I was diagnosed with breast cancer in '93 and underwent a radical mastectomy I heard of many women who would still rather die than lose a breast.

Sorry, no immediate solution here to this issue but to note it is one than needs much consideration.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Upsofloating....you have said it well!! Uterine cancer has not gotten much press and probably because we have no well known spokesperson to take up the cause!! Is that because this is just something that happens to "older women"?? It does alarm me that we are seeing younger and younger women with this diagnosis! Very scarey to say the least!

I will keep watching for opportunities to make our story heard!!

Karen

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Remember we asked to be put on the uterine cancer advocacy group??

I haven't heard a word. I hope my tax dollars are not paying that lady's salary.

Mary Ann

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

I didn't hear anything more from her either! I guess that means she didn't know what to do? I was thinking she was part of the American Cancer Society....does anyone else remember? Hmmm...guess we will have to be our own advocacy!! How can we get things fired up

Karen

cleo
Posts: 145
Joined: Sep 2009

Different country but totally agree. But... I contacted the Cancer Society and pointed out that a lot was done re national advertisingto to keep people informed of breast/cervical/ovarian/prostate cancer but there was nothing re this 'silent invader'. Lovely return letter agreeing with me but money the issue...no funds for anything else! Then we hear of $ million salaries. I don't get it!!

bonniesue
Posts: 126
Joined: Apr 2009

Thanks for all the supportive thoughts. Need to be screaming from the rooftops that a pap smear which many think gives you a pass does not screen for uterine ca. I too will write to Oprah and to ACS. What made me feel like this was the cervical cancer infomercial/commercial with that bottle of cologne. Has anyone seen it? At least most women with cervical are screened and diagnosed with a yearly pap.........there needs to be an addendum with a lady smiling saying her pap was normal see you next year then silence then the music stops and she says she has uterine cancer and never had an abnormal pap! Going through symptoms and talking about transvaginal ultrasounds,endometrial biopsies, not everyone has bleeding and uterine cancer, different age groups and should be caught early to save lives. I think Fran Drescher has helped----we also need more, more, more and mobilization. I am just saying there is more awareness with(other cancer) colorectal, breast, ovarian, prostate but uterine is not even discussed. Oh I am rambling and crying now.

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

The lack of a readily available diagnostic tool, done as routinely as paps, mammos, etc. is needed. It's the early detection that saves lives. I have a couple of sisters in Canada who now receive either annual or semi-annual uterine ultrasounds due to having a sibling with UPSC. However, I do not think this is the norm for those with no family history - as I was. (Also, I'm in US not Canada) Again, unlikely to be $$$ for research with publicizing it as a cause worthy of investigation. We need our Poster Person! Not something anyone WANTS to be.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I just re-wrote to the endometrial cancer support group person. Her (m wilson) email address is: mwilson@thegcf.org

I told her inquiring minds want to know what she is doing!!!! I told her that we want to help. Maybe we should all write and nag her - hint hint.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

I am happy to add my two cents worth to the nagging! If only we could find a well known actor or actress or other very public, well respected individual who have been touched by Uterine cancer we might implore their help!

I will send "mwilson" a message as well!

Karen

bonniesue
Posts: 126
Joined: Apr 2009

Will Write and Will NAG mwilson@thegcf.org and any other names sent my way and oprah can reach many or bonnie hunt who is a rn so anyone that has been bitterly touched please reach out as we need to mobilize and let our voices be heard. transvag ultrasound screening sounds like a plan especially for a silent,common female cancer! eh?

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

We also need research. I did a thorough search for current research studies for USPC and they are few and far between. This agressive, stealth cancer with so little research! Has the NIH forgotten about us?

Diane

Northwoodsgirl
Posts: 529
Joined: Oct 2009

I agree with so much of the above. The most famous person I know of that has had uterine cancer is the movie star Kathleen Bates.
I read a book recently by Liz Tilberis called "No Time To Die" about her battle with ovarian cancer. She was any probably still is the editor-in-chief of Harper's Bizarre. She is the President of the Ovarian Cancer Research Fund.
I will write a letter to Oprah also.
Maybe the magazine CURE might have a back issue with a famous uterine cancer survivor featured in it.
The pharmaceutical companies which make Taxol and Carboplatin have marketing departments which also might know of entities who have a vested and emotional connection to uterine cancer and are influencial.
Lori

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Sad to report that Liz Tilberis died in 1999. I also read her book a number of years ago. Also, I believe Kathy Bates is a survivor of ovarian cancer. Dixie Carter died just recently from endometrial cancer.

Northwoodsgirl
Posts: 529
Joined: Oct 2009

You are right! I didn't realize that Liz Tilberis had passed away. Kathy Bates had ovarian cancer...and I must have chemo brain! Ha!
Anyway Dixie Carter's husband (if I am not mistaken) is Hal Holbrooke? Or some movie star also...can't think of his name. I will have to Google it.
Lori

msgenelle
Posts: 3
Joined: Jul 2009

Fran Drescher actress and commedian was diagnosed with uterine cander on June 21,2000.
She heads a movement called Cancer Schmancer. She wrote a book detailing her battle with Uterine cancer. She has a web site www.cancerschmancer.com for awarness of gynecological cancers. She supported Joannas law "Gynecologic cancer awareness act" signed into law January 12th,2007 signed by George Bush. Named after Joanna Silver Gordon who died of ovarian cancer. Look up her site it is very informative and interesting. I found her book at the local library, very good reading and I could relate.
I was diagnosed with uterine cancer andenocarcinoma on May 12, 2009, I had a radical hysterectomy on June 12,2009. I was stage 1, grade 2, my onc says no recurrance.
I will be 79 years old in August and happy and lucky to be alice. I feel good!!!

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

This information was recently posted on Fran Drescher's Cancer Schmancer site. Others have previously talked about the "whispers" of uterine cancer. I thought it was very worthwhile to share the 10 warning whispers of uterine cancer. Unfortunately some of us never had any of the "whispers" and still ended up with Stage III USPC.

Did you know when cancer is found early, 90% survive?

LEARN the 10 whispers that could save your life
SHARE them with 10 girlfriends

LEARN: Nobody knows your body like you do, so listen when it whispers! 10 common warning whispers of gynecologic cancers are:

Indigestion, heartburn, nausea, or gas
Abdominal swelling or discomfort
Pelvic pain or cramping
Bloating or a sense of fullness, even after small meals
Backache
Painful, frequent, or burning urination with no infection
Diarrhea or constipation
Loss of appetite or unintentional weight loss or gain
Vaginal bleeding or irregular periods
Pain during intercourse
These symptoms can often be similar to other diseases and conditions. However, if you are experiencing any of the above symptoms, make an appointment with your doctor right away.

You should discuss which of the following diagnostic tools are appropriate for you:
PAP Test
CA 125 Blood Test
Trans-vaginal Ultrasound
Biopsy
To learn more about early detection and cancer prevention, visit www.CancerSchmancer.org.

SHARE: In honor of all the women you love and upcoming Mother's Day month, forward this message to 10 of your female friends and post on your website/social networks. You may just save a life!

GIVE: Support Cancer Schmancer's programs, dedicated to saving women's lives through early detection of cancer.

Hope you will forward these whispers on to others, and maybe save their life. In peace and caring.

aprillorey's picture
aprillorey
Posts: 104
Joined: Apr 2010

has any one wrote to DR Phill and tried to get on to his tv programe to tell there story with utraus cancer ? i was telling my husband the other day about writing to him and seeing if i could get on his show my husband thinks if only 1 writes he may not do a show but if a alot of woman write on the same subject we may get him to do a show on the cancer you never know maybe its worth a try ?

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

Give me an address; I will write Dr Phill too. I even thought of asking Warren Buffet for money for research; he didn't know what to do with his money and gave it to the Gates Foundation. It would be nice to do something for women right here in the US; When we learn more about these cancers it benefits women all over the world.

Diane

aprillorey's picture
aprillorey
Posts: 104
Joined: Apr 2010

Im not sure dr phils address but i emailed the show so if you go to dr phil just google there is an email i sent him an email u can as well

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