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Multiple small cysts & slightly elevated CA-125. Scared!
About me: Female (obviously), 31 years old, non-smoker, non-drinker, married, no children, very active (triathlete); the only medication I take is Lexapro (for anxiety); no BCPs; history of brownish discharge between periods after heavy exercise; history of microscopic hematuria; unsure if I've been ovulating for the past few months as I've experienced no breast tenderness (a usual sign of PMS for me) and last month my period was nearly 2 weeks late.
Yesterday I had a full body ultrasound done through my husband's health care program. It's called a Lifescan. Basically they take a medical history and then US everything in your body that can be screened through US. They also run bloodwork prior to the physical and take you through a comprehensive exercise physiology component.
These were my pelvic US results:
Left ovary: 3.1x3.8 cm with multiple small cysts (tech said they appeared fluid filled)
Right ovary: 3.2x3.9cm with multiple small cysts (same thing... fluid filled)
CA-125: 22 H (range used for this lab is < 21 U/mL)
No free floating fluid
No fibroids seen
No adnexal masses seen
I was advised to follow up with my GYN. I dropped off all of my paperwork to her yesterday after the Lifescan and her office called me this morning and said for me to schedule another US for a week after my next period.
In the meantime, I'm terrified! This lab uses 21 as it's high end for the CA-125 test. I keep seeing ranges listed from 0 to 35 U/mL everywhere I look. I'm confused! Assuming that they are benign, could the small cysts on the ovaries be playing with the CA-125 number? If I've been getting a period, but not the PMS signs that are typical for me for the past few months, could this be where the small cysts have come from? Perhaps I'm not ovulating?
Any insite would be appreciated. I'm so scared right now. Thank you in advance.
Yesterday I had a full body ultrasound done through my husband's health care program. It's called a Lifescan. Basically they take a medical history and then US everything in your body that can be screened through US. They also run bloodwork prior to the physical and take you through a comprehensive exercise physiology component.
These were my pelvic US results:
Left ovary: 3.1x3.8 cm with multiple small cysts (tech said they appeared fluid filled)
Right ovary: 3.2x3.9cm with multiple small cysts (same thing... fluid filled)
CA-125: 22 H (range used for this lab is < 21 U/mL)
No free floating fluid
No fibroids seen
No adnexal masses seen
I was advised to follow up with my GYN. I dropped off all of my paperwork to her yesterday after the Lifescan and her office called me this morning and said for me to schedule another US for a week after my next period.
In the meantime, I'm terrified! This lab uses 21 as it's high end for the CA-125 test. I keep seeing ranges listed from 0 to 35 U/mL everywhere I look. I'm confused! Assuming that they are benign, could the small cysts on the ovaries be playing with the CA-125 number? If I've been getting a period, but not the PMS signs that are typical for me for the past few months, could this be where the small cysts have come from? Perhaps I'm not ovulating?
Any insite would be appreciated. I'm so scared right now. Thank you in advance.
Well, I know how you feel regarding this "monitoring".I frankly wanted to have everything removed and my Gyn said no way.. She gave me the option of monitoring this cyst every 3months or so. She still wanted to see what the fluid in the uterus was all about and check on the fibroids and I figured "what the heck..you're in there anyway and I sure don't want to be worrying about this every 3 or 4 months "so she did agree to remove the ovary and tube. it was benign and the laparoscopy was not bad at all..
I'm sorry I can't speak to the endometrial "stripe" since I have no experience with that . Please let us know what you decide re: the removal of ovary/cysts, etc. and as I said before, try not to worry... Keep us posted.
Take care,
Sandy
I'm sorry I can't speak to the endometrial "stripe" since I have no experience with that . Please let us know what you decide re: the removal of ovary/cysts, etc. and as I said before, try not to worry... Keep us posted.
Take care,
Sandy
Sandy and I are only supporting each others "facts" because that is exactly what the gyn/ono surgeons and the American Cancer Society say regarding the ca-125.
I'm sure your not scared to have your cyst removed, and nobody really wants to have a surgery at any age, so I understand your wanting to see if there are other options only to well. I did the watchful waiting, the cyst got larger over the periiod of a couple years instead of shrinking when I went into menopause, and now it has to come out. It was a big nuisance to have to go have the TV/Us repeated every 6 months ( which is what my doctor wanted ) but I can tell you that things happen we don't expect and then it just gets so much more complicated. Last spring I broke 3 bones in my ankle and it took me almost a year to heal enough to walk normal again. During my recovery, the darn cyst started hurting and I was stuck in the house with a cast on and in terrible pain and going for the US at that point was out of the question. I finally was able to go in the late spring this year to have it done, got the results, and spent the good part of this summer going for all the testing the surgeon required before she would take it out. I am using a different doctor now, as the one that did the watchful waiting should have taken it out so much sooner than she was willing to. My advice would be just get it out so you can put it behind you but it's your call.
As far as the stripe goes, it's an endometrial stripe, which just means lining of the uterus. I looked on another website and found that in post-menopausal women, any thickness over 8cms is cause for further investigation, and some gyn's think as thick as 5 cms. needs addressing. Has your gyn suggested having an endometrial biopsy? I hope you can use some of this information to help you decide what's best for you, good luck.
I'm sure your not scared to have your cyst removed, and nobody really wants to have a surgery at any age, so I understand your wanting to see if there are other options only to well. I did the watchful waiting, the cyst got larger over the periiod of a couple years instead of shrinking when I went into menopause, and now it has to come out. It was a big nuisance to have to go have the TV/Us repeated every 6 months ( which is what my doctor wanted ) but I can tell you that things happen we don't expect and then it just gets so much more complicated. Last spring I broke 3 bones in my ankle and it took me almost a year to heal enough to walk normal again. During my recovery, the darn cyst started hurting and I was stuck in the house with a cast on and in terrible pain and going for the US at that point was out of the question. I finally was able to go in the late spring this year to have it done, got the results, and spent the good part of this summer going for all the testing the surgeon required before she would take it out. I am using a different doctor now, as the one that did the watchful waiting should have taken it out so much sooner than she was willing to. My advice would be just get it out so you can put it behind you but it's your call.
As far as the stripe goes, it's an endometrial stripe, which just means lining of the uterus. I looked on another website and found that in post-menopausal women, any thickness over 8cms is cause for further investigation, and some gyn's think as thick as 5 cms. needs addressing. Has your gyn suggested having an endometrial biopsy? I hope you can use some of this information to help you decide what's best for you, good luck.
Thank's val for the information and Sandy. Both of you obviously support each other's 'facts" and that is of course the way I like it. I am not 'scared' but trying to see if removal is not just the best option at 68 (in a few days) rather than having to report for examination every 3-4 months. Since you two have the knowledge. what about a think stripe in the uterus at this age?
ethicalgirl
ethicalgirl
Valerie is absolutely correct ! The test is not reliable in younger women due to the fact that so many things can throw the numbers off. If you "Search" and put in "American Cancer Society CA-125" , you will read of all the different things that elevate the CA-125. Many Dr's use this as one of the posters was told" it is better than nothing" .
Originally this test was used exactly as Valerie described it.. Then, some doctors chose to use it as a screening tool. The problem seems to be that women will see a higher number (which may or may not mean a thing) and panic for no reason. On the flip side, there are those patients who will see a lower number and feel secure that everything is just dandy. I learned on the Ovca Forum that there are women there that did not have cancer , and their numbers were higher. Conversely some of the Ovca patients have always had low numbers.. I am postmenopausal .. I was given the CA-125 as there is a slightly better reliability factor in older women.
Something to remember also... ovarian cysts are very , very common in younger women and most of the time resolve on their own.. And, on top of that ;95% are benign. But the MOST important this is this... try not to worry.. . most of the time , they will simply monitor these over a few months time..
Let us know,
Sandy
Originally this test was used exactly as Valerie described it.. Then, some doctors chose to use it as a screening tool. The problem seems to be that women will see a higher number (which may or may not mean a thing) and panic for no reason. On the flip side, there are those patients who will see a lower number and feel secure that everything is just dandy. I learned on the Ovca Forum that there are women there that did not have cancer , and their numbers were higher. Conversely some of the Ovca patients have always had low numbers.. I am postmenopausal .. I was given the CA-125 as there is a slightly better reliability factor in older women.
Something to remember also... ovarian cysts are very , very common in younger women and most of the time resolve on their own.. And, on top of that ;95% are benign. But the MOST important this is this... try not to worry.. . most of the time , they will simply monitor these over a few months time..
Let us know,
Sandy
Doctors use a Ca-125 on women with cysts routinely, but in pre-menopausal women there can be a lot of reasons for one to come back with a false positive.
In post-menopausal women, elevated levels are used as one of the criteria as part of a whole work-up, and usually cysts in post-menopausal women should be removed in any case. Neta is correct in her statements regarding the test. There are women on the boards that have had high values in their ca-125 results that did not have cancer, and women on the ovca boards that will tell you that they had negative results and did have cancer. The test is used when cancer is present to monitor patients prior to and during chemotherapy treatment to indicate if it's working for them. Just having a negative ca-125 result isn't the only reason a doctor will not be concerned about a cyst, it also has to do with the type of cyst, size, age of patient, ect. Cysts are very common in pre-menopausal women and not all of them need to be surgically removed as they can resolve on their own. The fact you haven't had treatment means your doctor has evaluated your case in it's entirety and made his decision based on those factors.
In post-menopausal women, elevated levels are used as one of the criteria as part of a whole work-up, and usually cysts in post-menopausal women should be removed in any case. Neta is correct in her statements regarding the test. There are women on the boards that have had high values in their ca-125 results that did not have cancer, and women on the ovca boards that will tell you that they had negative results and did have cancer. The test is used when cancer is present to monitor patients prior to and during chemotherapy treatment to indicate if it's working for them. Just having a negative ca-125 result isn't the only reason a doctor will not be concerned about a cyst, it also has to do with the type of cyst, size, age of patient, ect. Cysts are very common in pre-menopausal women and not all of them need to be surgically removed as they can resolve on their own. The fact you haven't had treatment means your doctor has evaluated your case in it's entirety and made his decision based on those factors.
Why do you sayt that the CA 125 :is not used to determine if you have cancer or not. It is used to see how a woman has responded to treatment..." I've had no treatment and I was given the CA 125 to see if it might be elevated enough to cause concern about an ovarian cyst!
Hi there. I was diagnosed with ovarian cysts several years ago, but I didn't have any pain nor I was bloated. The doctor said to wait and monitor them. After a year and a half, the ultrasound revealed septated cysts so the doctor ordered a CA - 125 exam. It came elevated and it was based on the same range that they gave you. The normal range value varies from one laboratory to another, and it is not used to determine if you have cancer or not. It is used to see how a woman has responded to treatment and in premenopausal women like you and I, it can be elevated for other reasons like bleeding cysts, menstruation, liver problems, fibroids, etc and 95% of the times the cysts are benign.
Like you, I was shocked of being told that I probably had cancer and that there was a possibility that they would remove everything and not only the affected ovary. So, I started searching on line and talking to doctors to make sure what had to be done. All this happened in January, and since then, I have had the marker done several times but the value has been different since I have had it done in several labs.
My recommendation is to wait for your period and between the fifth and seventh day, to repeat the ultrasound and see how the cysts are. Then, if necessary go to gyn-oncologist to get another opinion, but don't rush into anything.
Best wishes,
Neta
Like you, I was shocked of being told that I probably had cancer and that there was a possibility that they would remove everything and not only the affected ovary. So, I started searching on line and talking to doctors to make sure what had to be done. All this happened in January, and since then, I have had the marker done several times but the value has been different since I have had it done in several labs.
My recommendation is to wait for your period and between the fifth and seventh day, to repeat the ultrasound and see how the cysts are. Then, if necessary go to gyn-oncologist to get another opinion, but don't rush into anything.
Best wishes,
Neta
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