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CA-125 and Tests to Rule Out OC
Ok, let's have a a lively discussion about what are the proper tests etc. to diagnose or rule out OC.
Unless we want the status quo, we better start doing something different. It would be nice to think we will get gobs of money to find a cure or even a screening test,
"but until there's a test, awareness is best".
I am going to paste a bunch of stuff from web sites and quote sform articles (I am famous for this):
John Hopkins:
Early recognition of symptoms is the best way to save women's lives. Early symptoms include:
Bloating, a feeling of fullness, gas
Frequent or urgent urination
Nausea, indigestion, constipation, diarrhea
Menstrual disorders, pain during intercourse
Fatigue, backaches.
Take action if any symptoms last more than 2-3 weeks.
If ovarian cancer is suspected, ask to see a gynecological oncologist.
What You Should Ask Your Doctor
While everyone has these symptoms from time to time, it is important to know your own body and know when something is not right.
If you have these symptoms and they are not normal for you neither you nor your doctor knows why you are having them, then ask to have these important tests to help you rule out ovarian cancer.
Bimanual pelvic exam
Ca125 blood test (If it comes back elevated, ask your doctor to repeat this test monthly for several months. If it comes back progressively more elevated each time, even if the values are low, this is an indication that the condition could very likely be serious.)
Transvaginal ultrasound.
Barbara Goff, MD
Barbara Goff, MD, is director of gynecologic oncology at the University of Washington, Seattle; she is also the author of several studies that were used to identify symptoms common to women with early-stage ovarian cancer. "There is little to be lost and much to be potentially gained by increasing awareness of ovarian cancer symptoms that might lead to early medical evaluation and intervention. Although population screening with CA125 and ultrasound has the potential to lead to many false-positive results, their use in the evaluation of a symptomatic woman represents appropriate medical care."
I have more, but I will spare you...for now.
I know we don't want to bog down the gyn oncs with every cyst that comes along, but what is the correct protocol for diagnosis? Let's talk about it.
Breast Cancer was like OC at one time, relagated to secret conversations and no public awareness.
Let's get hysterical, lets make a stink.
If Kimberly had had a doctor that didn't dismiss her symptoms, or who had ordered a CA-125, a year ago when she had her first US and all, she might still be here today.
The only way this will change is if we agree on what the word is we want to get out!
If we continue to argue amongst ourselves and are not united, it will never change.
Unless we want the status quo, we better start doing something different. It would be nice to think we will get gobs of money to find a cure or even a screening test,
"but until there's a test, awareness is best".
I am going to paste a bunch of stuff from web sites and quote sform articles (I am famous for this):
John Hopkins:
Early recognition of symptoms is the best way to save women's lives. Early symptoms include:
Bloating, a feeling of fullness, gas
Frequent or urgent urination
Nausea, indigestion, constipation, diarrhea
Menstrual disorders, pain during intercourse
Fatigue, backaches.
Take action if any symptoms last more than 2-3 weeks.
If ovarian cancer is suspected, ask to see a gynecological oncologist.
What You Should Ask Your Doctor
While everyone has these symptoms from time to time, it is important to know your own body and know when something is not right.
If you have these symptoms and they are not normal for you neither you nor your doctor knows why you are having them, then ask to have these important tests to help you rule out ovarian cancer.
Bimanual pelvic exam
Ca125 blood test (If it comes back elevated, ask your doctor to repeat this test monthly for several months. If it comes back progressively more elevated each time, even if the values are low, this is an indication that the condition could very likely be serious.)
Transvaginal ultrasound.
Barbara Goff, MD
Barbara Goff, MD, is director of gynecologic oncology at the University of Washington, Seattle; she is also the author of several studies that were used to identify symptoms common to women with early-stage ovarian cancer. "There is little to be lost and much to be potentially gained by increasing awareness of ovarian cancer symptoms that might lead to early medical evaluation and intervention. Although population screening with CA125 and ultrasound has the potential to lead to many false-positive results, their use in the evaluation of a symptomatic woman represents appropriate medical care."
I have more, but I will spare you...for now.
I know we don't want to bog down the gyn oncs with every cyst that comes along, but what is the correct protocol for diagnosis? Let's talk about it.
Breast Cancer was like OC at one time, relagated to secret conversations and no public awareness.
Let's get hysterical, lets make a stink.
If Kimberly had had a doctor that didn't dismiss her symptoms, or who had ordered a CA-125, a year ago when she had her first US and all, she might still be here today.
The only way this will change is if we agree on what the word is we want to get out!
If we continue to argue amongst ourselves and are not united, it will never change.
OK Ladies, lets keep this going.
What else can we do.
I suggested before a"grass roots" effort to write doctors in our local area and send symptoms cards, etc. Let's not wait for Joanna's Law to kick in.
What else can we do.
I suggested before a"grass roots" effort to write doctors in our local area and send symptoms cards, etc. Let's not wait for Joanna's Law to kick in.
My daughter is 14 and a girl scout and she is working towards her Silver and Gold awards (sorta like an eagle scout) and she will be doing a project to promote Ovarian Cancer Awareness and volunteer with cancer patients. She is a very mature young girl and because of my brush with cancer and her new friendship with Victoria, she said she doesn't want another kid to go through what Victoria is experiencing right now. 14 is not too young, just like cervical cancer, we need to educate women at younger ages, that they don't have to accept discomfort related to female stuff and they need to be aware of the bodies. Now we have to get the primary care doctors and Ob/Gyn on the same page.
God Bless you all and I hope I can make a small difference in preventing the disease and helping those fighting the beast.
Have a great Thanksgiving with your families.
Victoria will be together with her family, so this is good.
God Bless you all and I hope I can make a small difference in preventing the disease and helping those fighting the beast.
Have a great Thanksgiving with your families.
Victoria will be together with her family, so this is good.
I agree with you that public awareness needs to rise to that of breast cancer. Before my dx I didn't ever worry about OVCA because I thought it only occurred in older women (I'm 37). One day, I was wearing my teal pin and several people at the mall asked me what that color meant...not one of them knew. After I told them, the common answer was wow..I am glad I know that. I am very thankful for this board because it helped me realize the importance of a gyn/onc.
What I wish every woman would ask the doctor for, when presented with any of these symptoms, is Rule out OVCA for me first and until then do not ask me to wait and see. If your doctor is seeing 4 patients per hour, ask for a double time with him/her. Ask what tests are available to help rule out OVCA, there aren't that many, only the biopsy is for sure. What finally got things moving for Leslee was a very good pelvic exam with palpataion of the abdomen, {almost took me off the table type}. Followed by a TVS and the CA125, After 4 1/2 months of a dx of IBS. Surgery 5 days later. Do I get angry when I read these posts, you better believe I do. As a retired nurse I am appalled at the medical profession. In the oath they take it says "first do no harm" , to pass on these symptoms without investigation is harmful. What about a petition to the AMA asking them to justify the position of the doctors passing on these symptoms without considering OVCA??? Most of us do not make hundreds of thousands of dollars per year like they do, we need to turn the responsibility for our lives over to them and make them accountable.
Hi Casey06!
How do you keep pushing when tests show nothing and doctors rely on the test results and not on US when we keep saying that what's going on is 'not like me'? They make us feel as if it IS all in our heads to the point we believe the test results. How can we ignore 4 out of 6 symptoms? How can they?
You know my situation. I'll have another ultrasound next week. If nothing is found do I have the courage to demand a laparoscopic look around? Should I do that? People think that pushing for an answer means that I'm looking for the worst when all I want is an answer. Four months is a long time with symptoms, especially when they are getting worse.
Thank you so much for posting links for us all. It does help.
Take care,
Lori
How do you keep pushing when tests show nothing and doctors rely on the test results and not on US when we keep saying that what's going on is 'not like me'? They make us feel as if it IS all in our heads to the point we believe the test results. How can we ignore 4 out of 6 symptoms? How can they?
You know my situation. I'll have another ultrasound next week. If nothing is found do I have the courage to demand a laparoscopic look around? Should I do that? People think that pushing for an answer means that I'm looking for the worst when all I want is an answer. Four months is a long time with symptoms, especially when they are getting worse.
Thank you so much for posting links for us all. It does help.
Take care,
Lori
It's funny you bring this whole topic up...as I continue to wait for my latest CA 125 test results. :o(
My gyno monitored a complex cyst for nearly a year before ordering the test. It turns out that the cyst was not what prompted the blood test - there was another mass identified in my last ultrasound with a 'somewhat nodular appearance.' My numbers were elevated and I say an oncologist within the week. My onco/gyno seems to have the attitude that too many women with cysts receive this test which leads them to the oncologist - we said he saw an average of 5 patients with cysts and elevated CA125 levels everyday. I know there are many factors that can effect your levels - but why not use the data to better treat a patient with concerns or suspicious U/S. If it is used to help identify endometriosis, a benign tumor, or OVCA then all women benefit. My aunt is a nurse in a hospital and has her CA125 tested each and every year (we have a family history of breast cancer). The more data we have about our bodies the better we can treat any issue! I wish I would have been more aware of the symptoms of OC - I could have better communicated my own symptoms instead of just assuming all I was feeling was just stress related. Education is key...this how I found my way to this forum!! The more we can talk with doctors - the more we know - the more doctors will have to listen and be held more accountable!!
My gyno monitored a complex cyst for nearly a year before ordering the test. It turns out that the cyst was not what prompted the blood test - there was another mass identified in my last ultrasound with a 'somewhat nodular appearance.' My numbers were elevated and I say an oncologist within the week. My onco/gyno seems to have the attitude that too many women with cysts receive this test which leads them to the oncologist - we said he saw an average of 5 patients with cysts and elevated CA125 levels everyday. I know there are many factors that can effect your levels - but why not use the data to better treat a patient with concerns or suspicious U/S. If it is used to help identify endometriosis, a benign tumor, or OVCA then all women benefit. My aunt is a nurse in a hospital and has her CA125 tested each and every year (we have a family history of breast cancer). The more data we have about our bodies the better we can treat any issue! I wish I would have been more aware of the symptoms of OC - I could have better communicated my own symptoms instead of just assuming all I was feeling was just stress related. Education is key...this how I found my way to this forum!! The more we can talk with doctors - the more we know - the more doctors will have to listen and be held more accountable!!
Thanks Shannon (great name, it's my daughters by-the way).
I remember when I read the first posts by Kimberly and I was just overwhelmed that this could happen! I had read about it, but here it was happening right in front of me and I was so angry.
She was a lovely lady and deserved so much better. Her daughter deserved to have her longer as well.Shame on her doctors last year! Attitudes need to change!
Dr. Katz of the OCNA is trying to educate women and their doctors to realize that, when investigating the symptoms, ovarian cancer should be considered as one of the possibilities. In short, they are trying to change the mindset from "It's probabaly nothing" to "Better safe than sorry". "Until there's a test, awareness is the best".
Robin Cohen, RN a GO nurse with Main Line Health System in Philidelphia: "The main goal is to make women aware of the symptoms, and to prompt them to listen to their bodies and know what is normal for them. They know their own bodies best, and thet are in the best position to know when something is wrong. My advise? Don't let anyone tell you it's all in your head or that you are just stressed. Keep pushing until there is an answer."
(I told you I had more)
I remember when I read the first posts by Kimberly and I was just overwhelmed that this could happen! I had read about it, but here it was happening right in front of me and I was so angry.
She was a lovely lady and deserved so much better. Her daughter deserved to have her longer as well.Shame on her doctors last year! Attitudes need to change!
Dr. Katz of the OCNA is trying to educate women and their doctors to realize that, when investigating the symptoms, ovarian cancer should be considered as one of the possibilities. In short, they are trying to change the mindset from "It's probabaly nothing" to "Better safe than sorry". "Until there's a test, awareness is the best".
Robin Cohen, RN a GO nurse with Main Line Health System in Philidelphia: "The main goal is to make women aware of the symptoms, and to prompt them to listen to their bodies and know what is normal for them. They know their own bodies best, and thet are in the best position to know when something is wrong. My advise? Don't let anyone tell you it's all in your head or that you are just stressed. Keep pushing until there is an answer."
(I told you I had more)
I agree with you totaly. I was reading the posts from Kimberly from a month ago. It makes me soooo angry that she was dismissed by her doctors and she was even feeling GUILTY about what she felt was "nagging" them. JEEZZZZ it should NEVER get to that point. That infuriates me to no end. I work with doctors and I see how arrogant soooo many of them are. It makes me sick. We really need to do something . Lets decide something. A lot of us work in the medical field and try to help in our own ways. Shannon
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