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Ovarian Cysts - My POSITIVE experience....
I have spent a great deal of time lurking around this site the past couple of months. I have not posted because I wanted to wait for a definitive diagnosis. Here is my story...
I am a 35 year old caucasian woman with two children, (10 and 8 years old) I'm healthy. I have slightly elevated cholesterol and I could stand to lose 20 pounds. (hey, who couldn't, right?)
I went to my ob/gyn in early Feb 09 complaining about "having my period all the time". My ob/gyn did a pelvic exam, found nothing out of the ordinary - did a biopsy on my uterine lining and a Pap smear - both came back normal. So she said our next step is an ultrasound. So the appointment was made. Went to the first ultrasound (late February) and went to the ob/gyn for the results a week later. She told me that I had a "rather large" (10 cm) complex cyst on my right ovary. Nothing to be "alarmed about" - let's try to shrink it, she said. So I took this medicice for 10 days - not sure of the name - birth control pills of some type - and then went back in for another ultrasound. This one was done in the end of March. Same technician - same results. No change in the mass - (no smaller - no bigger) but this time the radiologist recommended a cat scan - to better assess the cyst. So my ob/gyn sent me for the cat scan. This was done in mid April . I had a pelivc cat scan done - (not a fun prep for that one! YUCK!) and I waited 10 days for the results. End of April - my ob/gyn calls me and tells me that the cat scan shows that the mass on my right ovary is bigger and now there is one on my left. (Ok, NOW - I'm starting to get worried!) She wants me to go the lab and have some blood drawn - the infamous CA 125 test. Ok - I say - I went in that day. Simple blood test. Amazingly scary results. Normal is 35 - mine was 282. Ok - so now I am really getting nervous. She tells me - we need to do surgery asap. I want you to clear your schedule this week. So of course, I clear my schedule. Scared out of my mind. A million questions in my head. She calls me back the very next day and basically says to me " I want you to have an ob/gyn oncologist do this surgery." She refers me to the oncologist and I get an appointment for a consult with him on (5/14) and surgery is scheduled for 5/22. ( yes, three days ago)
I was scared out of my mind. Reeling with fear over statistics I read online. I read one thing that said that "a patient that presents with a pelvic mass and a CA 125 over 100 - about 90% of those cases are malignent." I read a ton of scary stuff about mortality rates and staging and grades.
In the end. I had my right ovary laprascopically removed. (a FOOTBALL sized cyst) My uterus removed (by my choice) good thing because it showed signs of advanced endometriosis, and the cyst on my left ovary had dissipated by the suregery date. I am home now, recovering and feeling like I have been given new life. Patholoy releavled NO cancer. This was all due to the endometriosis!
So if you are home, reading these blogs, scared out of your mind. I want you to have my story to read. To know that all the signs can be pointing to one thing - in my case I was petrified of cancer- but the CA was elevated as a result of the endometriosis. I am feeling great. Ready to get back to living my life.
I hope that anyone who is playing the waiting game as I did - waiting for the definitive diagnosis that only surgery and pathology can give you - I want you to wait with hope. Know that all the signs can be pointing to cancer - in my case - large, complex pelvic mass and an elevated CA125. The signs can be wrong. I am going to be fine - and I hope that anyone reading this - living with the same fears that I lived with - hold onto that hope that your ending can be a happy one too.
I don't think I need a pain pill tonight.
I am "high on life" at this point!
To all of those who may read this - I wish you well!
~Dawn
I am a 35 year old caucasian woman with two children, (10 and 8 years old) I'm healthy. I have slightly elevated cholesterol and I could stand to lose 20 pounds. (hey, who couldn't, right?)
I went to my ob/gyn in early Feb 09 complaining about "having my period all the time". My ob/gyn did a pelvic exam, found nothing out of the ordinary - did a biopsy on my uterine lining and a Pap smear - both came back normal. So she said our next step is an ultrasound. So the appointment was made. Went to the first ultrasound (late February) and went to the ob/gyn for the results a week later. She told me that I had a "rather large" (10 cm) complex cyst on my right ovary. Nothing to be "alarmed about" - let's try to shrink it, she said. So I took this medicice for 10 days - not sure of the name - birth control pills of some type - and then went back in for another ultrasound. This one was done in the end of March. Same technician - same results. No change in the mass - (no smaller - no bigger) but this time the radiologist recommended a cat scan - to better assess the cyst. So my ob/gyn sent me for the cat scan. This was done in mid April . I had a pelivc cat scan done - (not a fun prep for that one! YUCK!) and I waited 10 days for the results. End of April - my ob/gyn calls me and tells me that the cat scan shows that the mass on my right ovary is bigger and now there is one on my left. (Ok, NOW - I'm starting to get worried!) She wants me to go the lab and have some blood drawn - the infamous CA 125 test. Ok - I say - I went in that day. Simple blood test. Amazingly scary results. Normal is 35 - mine was 282. Ok - so now I am really getting nervous. She tells me - we need to do surgery asap. I want you to clear your schedule this week. So of course, I clear my schedule. Scared out of my mind. A million questions in my head. She calls me back the very next day and basically says to me " I want you to have an ob/gyn oncologist do this surgery." She refers me to the oncologist and I get an appointment for a consult with him on (5/14) and surgery is scheduled for 5/22. ( yes, three days ago)
I was scared out of my mind. Reeling with fear over statistics I read online. I read one thing that said that "a patient that presents with a pelvic mass and a CA 125 over 100 - about 90% of those cases are malignent." I read a ton of scary stuff about mortality rates and staging and grades.
In the end. I had my right ovary laprascopically removed. (a FOOTBALL sized cyst) My uterus removed (by my choice) good thing because it showed signs of advanced endometriosis, and the cyst on my left ovary had dissipated by the suregery date. I am home now, recovering and feeling like I have been given new life. Patholoy releavled NO cancer. This was all due to the endometriosis!
So if you are home, reading these blogs, scared out of your mind. I want you to have my story to read. To know that all the signs can be pointing to one thing - in my case I was petrified of cancer- but the CA was elevated as a result of the endometriosis. I am feeling great. Ready to get back to living my life.
I hope that anyone who is playing the waiting game as I did - waiting for the definitive diagnosis that only surgery and pathology can give you - I want you to wait with hope. Know that all the signs can be pointing to cancer - in my case - large, complex pelvic mass and an elevated CA125. The signs can be wrong. I am going to be fine - and I hope that anyone reading this - living with the same fears that I lived with - hold onto that hope that your ending can be a happy one too.
I don't think I need a pain pill tonight.
I am "high on life" at this point!
To all of those who may read this - I wish you well!
~Dawn
Thank you so much for sharing your inspiring story. As I await my surgery date to remove the 10+ cm mass (and ovaries), I will remember your very encouraging words . . . .
Thank you.
Thank you.
Thank you so much for sharing your story. It is good for those just starting this journey to know that the majority of all cyst issues do end well like this. I'm so glad that your endometriosis will now be gone and you will have relief beyond the cysts. I hope you will stick around and as one of the wise ones help those newbies who post. As Sandy said, do take it easy and let your body heal.
Very good news ! And.... it just underscores what we try to tell folks. .. There is absolutely no way that one can be sure if a cyst is malignant or not unless and until the surgery has been performed.
And, you are also such a good example of how the CA-125 is not always accurate. So many gals post about the CA-125 and we try and try (sometimes to no avail) to stress that it is just not always accurate, and that many other things can cause the elevation besides cancer.As we've said many times; there are women on the Ovca forum that have always had low CA-125 numbers and have OVCA.. And.. some (like yourself) have higher numbers with no evidence of cancer at all !!
There are many of us here that share your story in one way or another. Perhaps the cyst wasn't that large, perhaps there was no endo, perhaps the CA-125 was even higher than yours... there are so many different factors, but the one thing we all had in common was that fear of the unknown.
So glad you posted with another "success story".. Actually, for all the newcomers that may be reading this; there are many more "positive" experiences than the feared cancer dx..Just go back in the postings, read the profiles and you will see that most of us were scared witless, and the vast majority found the news to be very good.So.. don't assume the worst, don't agonize over the CA-125, and remember above all else----cysts are very common (even the large ones), and they are 95% benign !!
Dawn, still take it a little easy. We forget that it takes longer to heal internally even though we may feel fine, and look fine from the "outside". Don't overdo.. Glad it all worked out for you..
Take care,
Sandy
And, you are also such a good example of how the CA-125 is not always accurate. So many gals post about the CA-125 and we try and try (sometimes to no avail) to stress that it is just not always accurate, and that many other things can cause the elevation besides cancer.As we've said many times; there are women on the Ovca forum that have always had low CA-125 numbers and have OVCA.. And.. some (like yourself) have higher numbers with no evidence of cancer at all !!
There are many of us here that share your story in one way or another. Perhaps the cyst wasn't that large, perhaps there was no endo, perhaps the CA-125 was even higher than yours... there are so many different factors, but the one thing we all had in common was that fear of the unknown.
So glad you posted with another "success story".. Actually, for all the newcomers that may be reading this; there are many more "positive" experiences than the feared cancer dx..Just go back in the postings, read the profiles and you will see that most of us were scared witless, and the vast majority found the news to be very good.So.. don't assume the worst, don't agonize over the CA-125, and remember above all else----cysts are very common (even the large ones), and they are 95% benign !!
Dawn, still take it a little easy. We forget that it takes longer to heal internally even though we may feel fine, and look fine from the "outside". Don't overdo.. Glad it all worked out for you..
Take care,
Sandy
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