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Ovarian Cancer Studies & My Response to Reuters
Hi All - This was a top Reuters' story today and although it is regarding what centers offer proper treatment, I took the opportunity to educate them on the importance of early detection studies with my response below. I have to do something.
"WASHINGTON (Reuters) - One in three U.S. ovarian cancer patients does not get the recommended comprehensive surgery, researchers reported on Monday."
My Response:
Your article about ovarian cancer studies on April 9, 2007, is so irrelevant. These studies are completely useless because doctors are abosulutely not listening to women and not treating early detection symptoms properly at all. I have been a part of the medhelp.org ovarian cancer support forum for a few months now and most women that has this disease (not sure if I'm there yet) had the same exact early symptoms that went untreated or they were told it was IBS or other GI problems, only to find out a year or so later that they were with stage III ovarian cancer. So a study of doctors needs to be performed to see which ones take their patients' early detection symptoms seriously; according to my forum, it's running around 1-5% of doctors! This is not a silent disease; it is speaking loud and clear in early stages according to women who have it. In addition, the only method of diagnosing early detection symptoms is exploratory surgery and there clearly needs to be a better way. But I'd bet most women would opt right now for the surgery in lieu of not knowing until they reach deathly stages. So please save these useless studies for someone who cares about them and initiate some studies on why doctors ignore the early stage symptoms and also for how this deadly disease can be detected early without surgery. Feel free to visit this forum of wonderful women at www.medhelp.org and refer to the ovarian cancer patient-to-patient support forum. This is NOT a silent disease.
"WASHINGTON (Reuters) - One in three U.S. ovarian cancer patients does not get the recommended comprehensive surgery, researchers reported on Monday."
My Response:
Your article about ovarian cancer studies on April 9, 2007, is so irrelevant. These studies are completely useless because doctors are abosulutely not listening to women and not treating early detection symptoms properly at all. I have been a part of the medhelp.org ovarian cancer support forum for a few months now and most women that has this disease (not sure if I'm there yet) had the same exact early symptoms that went untreated or they were told it was IBS or other GI problems, only to find out a year or so later that they were with stage III ovarian cancer. So a study of doctors needs to be performed to see which ones take their patients' early detection symptoms seriously; according to my forum, it's running around 1-5% of doctors! This is not a silent disease; it is speaking loud and clear in early stages according to women who have it. In addition, the only method of diagnosing early detection symptoms is exploratory surgery and there clearly needs to be a better way. But I'd bet most women would opt right now for the surgery in lieu of not knowing until they reach deathly stages. So please save these useless studies for someone who cares about them and initiate some studies on why doctors ignore the early stage symptoms and also for how this deadly disease can be detected early without surgery. Feel free to visit this forum of wonderful women at www.medhelp.org and refer to the ovarian cancer patient-to-patient support forum. This is NOT a silent disease.
Funny to read your posting cause, I just came back from lunch where I told a bunch of ladies about my symptoms and that this disease is misnamed because it is not a silent disease. It's screaming loud to us but doctors are not listening. Thanks for responding to Reuter's article.
Thank you so much for your support. I'm never sure if I should speak for others, but I couldn't let this opportunity slip by. I'm sure it is important, in later stages, who gets treated properly, etc., but they are totally missing the point - there would be sooooo fewer late stages of this disease and no need for studies like theirs if early detection was at the forefront. I hope my response gets some publicity. Although I have not been dx'd with a formal "disease" I do have all the "early" symptoms and am very nervous as my body is going haywire with all my symptoms and initial prognoses. I hope to know more for sure on April 23rd.
MeganWaldrep: Feel free to use this as you see fit - the more awareness, the better. And, I am so sorry about your sister for hers was truely silent. There is a test that has been put on the burner for early detection and it is 95% reliable, does not pick up other diseases like a cold, endo/adeno, viral infection, etc. like the CA125 does (this is a uselss test unless it is being used as a marker once the disease has been confirmed). It is the LPA test and I don't know what is going on with it. I can dig out the article and study I found if you would like or you can google/yahoo LPA ovarian test. It was a study performed at the University of Miami, I believe, with wonderful results. I'm afraid there is some sort of conspiracy going on with getting this test to the forefront. Just my feeling.....
Thanks again for your support and best to all........
MeganWaldrep: Feel free to use this as you see fit - the more awareness, the better. And, I am so sorry about your sister for hers was truely silent. There is a test that has been put on the burner for early detection and it is 95% reliable, does not pick up other diseases like a cold, endo/adeno, viral infection, etc. like the CA125 does (this is a uselss test unless it is being used as a marker once the disease has been confirmed). It is the LPA test and I don't know what is going on with it. I can dig out the article and study I found if you would like or you can google/yahoo LPA ovarian test. It was a study performed at the University of Miami, I believe, with wonderful results. I'm afraid there is some sort of conspiracy going on with getting this test to the forefront. Just my feeling.....
Thanks again for your support and best to all........
Hey there!
If you don't mind I'd like to post your article and response on the ovariancancerforum website.
I agree with you 100% with the exception of the disease not being silent because I think it is. My sister Brittany listened to her body when it whispered but it didn't help a thing.
Brittany had an oncologist/gynocologist (from UAB's group best in the nation) that was watching her on her check ups every 3 months and he didn't pick it up either. Brittany's Cat/Scans all came back normal as well her vaginal ultrasounds, pap smears (which we know doesn't detect anything but I'm just saying)and CA-125 was "normal" (horrible test and this is proof why)
What happened was Brittany's ovarian cancer was painted on her organs so even the best doctors couldn't detect it without laprascopic surgery. Obviously it was too late for us.
I totally agree that doctors should listen to us! I've been through so many gyno's lately.... I think we should have funding for a REAL test and not CA-125 which are ridiculous (Britt's CA-125 was a ten one year before lapra.) but a real test! It is so very important!
;)Megan Waldrep
www.ovariancancerforum.com
If you don't mind I'd like to post your article and response on the ovariancancerforum website.
I agree with you 100% with the exception of the disease not being silent because I think it is. My sister Brittany listened to her body when it whispered but it didn't help a thing.
Brittany had an oncologist/gynocologist (from UAB's group best in the nation) that was watching her on her check ups every 3 months and he didn't pick it up either. Brittany's Cat/Scans all came back normal as well her vaginal ultrasounds, pap smears (which we know doesn't detect anything but I'm just saying)and CA-125 was "normal" (horrible test and this is proof why)
What happened was Brittany's ovarian cancer was painted on her organs so even the best doctors couldn't detect it without laprascopic surgery. Obviously it was too late for us.
I totally agree that doctors should listen to us! I've been through so many gyno's lately.... I think we should have funding for a REAL test and not CA-125 which are ridiculous (Britt's CA-125 was a ten one year before lapra.) but a real test! It is so very important!
;)Megan Waldrep
www.ovariancancerforum.com
Bravo to you...everything you wrote is the truth and I'm glad you felt compelled to respond to them. Doctor's aren't listening to their patients...it's that plain and simple. I'm glad you invited them to come over here and listen in...they'll see what struggles we really face with healthcare.
Becky
Becky
You hit the nail on the head! Thank you for speaking for us all. Regardless of when/if I ever get a dx and if it's not cancer, I still plan to fight this fight because this is absolutely ridiculous. As I said in another thread/post: What good is early detection if no one is listening????
Thank you so much for your prayers for tomorrow ., and good luck to you when you go and sort out your problems , we are all with you . Take care - Silver
My very best of luck to you for tomorrow's appointment. My thoughts and prayers are with you. Be well.........
Hey HatGirl!
I sure will post it and your response! Is there a link that I can go to to write Reuters?
Please, please, please tell me more about this test! I have never heard of it! I'd love to know!
Keep up the good fight!
love,
megan
www.ovariancancerfourm.com
I sure will post it and your response! Is there a link that I can go to to write Reuters?
Please, please, please tell me more about this test! I have never heard of it! I'd love to know!
Keep up the good fight!
love,
megan
www.ovariancancerfourm.com
Here is the site for the LPA study. Go figure on why this was shelved! Best.
http://www.facingourrisk.org/newsletter/2006summer/ovarian_cancer.html
http://www.facingourrisk.org/newsletter/2006summer/ovarian_cancer.html
alright hatgirl. I'm with you on this and I don't understand it. We're talking about it now in the chat room of the forum. Click on "chat" to join us you don't have to sign up or anything.
I'm going on a follow up app. with the gyn this week and I'm going to ask about the LPA.
thank you for forwarding this to me!
meg;)
www.ovariancancerforum.com
I'm going on a follow up app. with the gyn this week and I'm going to ask about the LPA.
thank you for forwarding this to me!
meg;)
www.ovariancancerforum.com
Hi there , you are right , it is the doctors who should be putting the lists of symptoms together when women keep going backwards and forwards . In my experience Iand I believe many others do keep going to see the doctor about indigestion , pelvic pain , nausea . I think the doctors should be alert and read peoples history of visits before sending them away time and time again . I have my checkup tomorrow so am very nervous !! I will just say a few prayers tonight for myself and everyone else on here . Take care - Silver
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