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I was interviewed and quoted about Online Support Groups for Uterine Cancer Survivors

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

A couple of months ago I received a call from the people who administer this website, asking if I would be willing to talk to a writer for an online Health magazine about online Discussion Boards as a support option for uterine cancer survivors. I said I was willing and I spoke with the writer on the phone. I just came across the finished article by accident today! I am barely mentioned, but the website itself looks like a pretty good resource for us: http://www.everydayhealth.com/uterine-cancer/support-groups.aspx

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

LInda, that's pretty cool - you were 50% of the people quoted!!!

deanna14
Posts: 733
Joined: Oct 2008

I checked out that article and the website, both seem to be a really great resource. You are a star!
I was interviewed last week by a lady from the ACS who was writing an article about the Look Good Feel Better seminars. At first, I really didn't want to do it, then I decided if something I said or did made this whole mess a little easier to handle for someone else it was worth it.
I wish I could figure out something to do that would push the movement of making uterine cancer more visible. It seems like the big emphasis is always on breast cancer and now colon cancer is pretty visible. My neice plays HS basketball and they had tshirts made and wore pink socks and shoelaces and it was a fundraiser for breast cancer awareness. It's all good, but I'm finding myself saying "what about uterine cancer?" What gets me is that it really does need visibility! I never, ever missed my yearly gyn exam and pap smear since I was 18 years old and I still got uterine cancer. Now I know that uterine cancer is rarely found by pap smear. I thought I was doing everything right, everything that was recommended. Shouldn't they be figuring out a better way to screen for uterine cancer!!!! Ugh!! It just gets me so fired up, but how do you speak out. I tell all of my friends, people I know the sypmtoms I was having, but they were all so vague and could have been caused by other things. I want to scream at the top of my lungs, get on TV, do something to let women know that a pap smear won't protect you from uterine cancer. Also, that a women should never let a doctor dismiss her symptoms because she is "too young" for cancer. Many of the women on this website don't fit the age criteria! I want to start touring with Fran Drescher!

cookie1948
Posts: 79
Joined: Feb 2009

I agree, i think uterine cancer is much overlooked and needs to be screened somehow. Even ovarian cancer, they really don't have enough screening for this cancer either. the ca125 is not used on a routine basis as i was told it gives false results sometimes. So............why are other cancers so publicly recognized and screened for? I never thought a lot about uterine cancer til my mom got it and read more on it. I am soooooooooo angered sometimes as look at prostate cancer? It really got pushed and publicized and now they have so much better screening for the men for prostate cancer. It's really amazing.
Cookie

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

I agree with Deanna and Cookie - I have the same feelings that Uterine CA does not have the support that breast cancer does. I will support the Relay in my area later this year. What else do we need to do to publicize this? Maybe if we speak out there will be more research and attention paid to early detection and treatment.

Like Deanna, I was the post person for well checkups. What is this UPSC all about????

Mary Ann

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Have you gals noticed how much alike a lot of us are? Many of us could be a 'poster person' for check ups, diets, and exercise. Many of us are outside in our gardens and have the same hobbies. As I read the posts I wonder what could have happened that we are/were all so very sick. Genetics? Water? Food? Just plain bad luck? I totally agree about not ever having the spotlight for our kinds of cancer. The relay is wonderful for all with cancer and our caregivers..... but we sure could use some awareness etc like the breast cancer walks. ?? Ideas would be fun to compare. Linda, I read the article too. Great job. Must be other areas like this we can saturate!!??

deanna14
Posts: 733
Joined: Oct 2008

Thanks for verifying my feelings! We need better screening for uterine and ovarian cancer. The symptoms are vague and could be attributed to so many things other than cancer. I would love to speak out!!! Where and when?!

justada's picture
justada
Posts: 6
Joined: Mar 2009

I TOTALLY agree with you Deanna. I had no symptoms whatsoever. I had been diagnosed with possible PCOS at age 16, but so little was known about it then that no treatment was even offered. I had paps, ultrasounds--nothing. I wasn't diagnosed with anything again until 2005, at age 36, with PCOS and endometrial hyperplasia. The only test that even brought it to the doctor's attention was I had a CT for what was thought to be appendisitis.
There really should be more put out there for uterine cancer awareness. I now proudly wear a peach colored bracelet to stir up curiosity, then I tell anyone who will listen how important it is to be aware how stealthly uterine cancer occurs.
My hat is off to you in your efforts.
PS When you make it big--say hey to Fran for me--LOL.

deanna14
Posts: 733
Joined: Oct 2008

I will tell Fran hello! Your story sounds familiar to me... only mine was always that my symptoms were from endometriosis. The kicker is, when I had the lap and hysteroscope that originally found the polyp... I was also told that the endometriosis was mild. I know that second guessing will not change anything for me... I just so wish that there was better screening for uterine and ovarian cancers. I'm not a scientist, biologist, physcian or anybody that brilliant, but there has got to be a way to find this before it is so advanced!!!

Anyway, so I hope you are doing well now?! Did you have to have treatment for the hyperplasia?

Thank you for validating my feelings. Take care of you and God Bless.
Deanna

deanna14
Posts: 733
Joined: Oct 2008

I just read your "about me page". I am so happy for you that your cancer was found early and that surgery was the only treatment necessary. Congratulations. I also wanted to say that you are sooooo a survivor right along with the rest of us! You are the epitomy of the goal of my soapbox. In my opinion, if effective screening were being done, the majority of uterine and ovarian cancers would be found in the early stages! They have raised the survival rates of many cancers like breast, cervical and colon. What are we waiting for with ovarian and uterine? :-)!!!
Preach it sister! LOL

spldmama
Posts: 1
Joined: Jul 2009

THE MONTH AFTER I TURNED 39, I WAS DIAGNOSED WITH UTERINE CANCER. I WAS VERY LUCKY THAT IT WAS CAUGHT EARLY. I WENT THRU A TOTAL HYSTERECTOMY. I DIDNT WANT ANYTHING CLOSE TO THOSE PARTS IN ME.... I JUST CELEBRATED MY 2 YEAR CANCER FREE BIRTHDAY. ALL OF A SUDDEN IT HAS BROUGHT ALOT OF ANGER. NOT ENOUGH IS BEING SAID ABOUT UTERINE CANCER LIKE BREAST CANCER. IF I WERE NOT HAVING PROBLEMS WITH MY PERIODS AND NON STOP BLEEDING, I WOULDNT HAVE KNOWN ABOUT THE CANCER. TO ME THAT IS SILENT BUT DEADLY. CAN SOMEONE HELP ME HANDLE MY NEW ANGER?

cleo
Posts: 122
Joined: Sep 2009

Spidmama I am very interested in these comments. I too was doing everything right re safety healthwise and thought that I was informed...couldn't believe that I was so ignorant re uterine cancer, never occurred to me - and then found others also unaware. I wrote to the Cancer Society, NZ re an awareness programme as they have excellent awareness programmes re cervical/breast/prostate. Received a pleasant letter in response basically saying that they felt they had covered all bases. This I intend to pursue and this site has made me more determined. Can't help with the anger...my anger just made me adamant that I was going to be well. There are many ladies here who can and will help. I'm not good at it!

susie1143's picture
susie1143
Posts: 109
Joined: Aug 2009

I have been told by each doctor that I'm young (48)to have uterine cancer. Thankfully the PAP came back abnormal. Approx 7 years ago I was diagnosed with PCOS and for years argued with doctors regarding many issues that relate to PCOS. When the PAP came back abnormal I was shocked since I thought my symptoms were due to peri-menopause. Boy was I surprised.

Since being diagnosed Stage 1C, Grade 2, I have tried to find a research study. There's plenty for many other cancers but I could not find 1 that I qualified to participate in. I was either too young or wrong Stage or Grade. This is very discouraging especially since many doctors disagree on how to treat uterine cancer at Stage 1C. Being in Stage 1C, I'm borderline of intermediate and with that more chances of reoccurrance. Initially I was thought to be a Grade 3 but was changed after surgery to Grade 2 during staging.

The one thing that I hear a lot is that if you're going to get cancer, this is the best to have. I realize that I'm fortunate to have been diagnosed as a Grade 2 but I still worry about reoccurrance especially since my Mom is in remission from Breast Cancer and the uterine cancer is estrogen related. This truly bothers me.

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