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Cancer: Cervical & Ovarian Message Board
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Old 06-23-2010, 09:57 PM   #1
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Join Date: Jun 2010
Location: Illinois
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DawnBehm HB User
Exclamation CA 125 test and Ovarian Cysts

I just was release from a hospital stay from last Monday to that Friday and just found this site. I am concerned but trying not to get myself to scared but I was told during my pelvic exam from June 10th ER visit I had Ovarian cysts. Then was reafirmed during my inpatient stay that my CAT scan and Pelvic Ultra sounds (yes had 2 of these one on the 10th then again during inpatient stay) both showed I had a small ovarian cyst of approx 3.1 cm in left ovary and the right ovary showed a 7.1cm cyst still growing. the OBGYN who took on my case as my other OBGYN's no longer are around also order the tumor marker test I belive the CA 125 and I was told the normal range for women should be like 34-35 and mine is at 227.8 which freaks me out a lot.

At this point the OBGYN gave me a depoprovaria or depo shot saying he hopes this will help shink the cyst. Never heard of this being done before but I also don't make a living doing his job. Right now I have more questions then answers till I go back for a follow up visit from the hospital with him on June 30th. So one minute I am fine and the next I a terrified this is cancer.

Now I have other health issues and they are Juvinile Rheumatoid Arthritis and Osteo Arthritis as well as Fibromyalgia ergo I live in constant pain. Now I am 38yrs old I have two cerviexs and 2 Uterues fully formed one a bit larger then the other. It has been shown that I can not concive children and really at this point I don't want any as I can't even care for myself entirely without the loving assistance of my husband and other family members. I have also had two joint replacements my left Knee (9-11-01) and right Hip on (5-27-2002) which is really important I keep any and all infections closley monitored as to prevent the possibility of them migrating to those joint replacements.

In the last 5 yrs my periods have grown erratic where I can have 2-3 weeks bleeding or spotting along with cramping. Sometimes I have a heavy flow other times it is megar at best and what can only be called like dried blood as it is brownish. At times I clot heavily and other times not at all. My family has no history of Cancer especially any females. I am scared that like in all other things I have taken this burden on as well in Ovarian Cancer. anyone out there who can help ease my thoughts a bit until I see my OBGYN on the 30th?

 
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Old 06-24-2010, 05:31 AM   #2
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estria HB Userestria HB Userestria HB Userestria HB User
Re: CA 125 test and Ovarian Cysts

Hello Dawn,

You did not mention your age in your post. Are you close to menopause (ie. in your forties) ? If so, the bleeding may have something to do with perimenopause and be completely normal. If you are on medication, it can also screw up your cycle. You will still have to follow up to find the cause but I would not freak out about this until you have more information (oh and by the way, the depo will definitely change your bleeding pattern and I hope the doctor told you about this).

As for the cysts, what kind of cysts are they ? Are they simple fluid filled cysts or complex cysts with solid components ? This is extremely important as simple fluid filled cysts are very rarely dangerous. Complex cysts are also predominantly benign (about 90% of them as a matter of fact) but ovarian cancer can also appear this way so surgery by a gynecological oncologist would be necessary to remove and biopsy these to be sure. The CA-125 test is a notoriously unreliable test. In women who are premenopausal, this test can show high even though there is no cancer present and it can miss stage 1 ovarian cancer in others (ie. show normal when cancer is present). Just to give you an example, my sister in law had a large 12 cm septated cyst on her ovary and she had a high CA-125. She was very scared and went to a gynecological oncologist who went in and removed the cyst. It turned out to be completely benign. Usually the CA-125 is considered normal for a score of anything between 0 and 35 but a higher reading does not necessarily mean that cancer exists. At the moment they are trying to develop a test that is more accurate (like Ovasure and others) but until that happens, the CA-125 is all that we have.

What do the ultrasound reports say ? These have a higher predictability value than the CA-125. Although the U.S. is not 100% accurate, radiologists and gynecologists can usually look at the morphology (the "look") of a cyst and make a reasonably accurate diagnosis. Ovarian cancer is usually jagged looking with specific looking solid protrusions coming into it. Benign cysts are usually smooth, thin walled structures which are usually anywhere up to around 5 or 6 cms (larger cysts are also benign but the larger they are and the faster they grow, the more abnormal and a cause for concern). Follicular and corpus luteal cysts, which are normal monthly growths on a woman's ovaries, can grow up to 5 or 6 cms in diameter and these normally disappear within 2-3 menstrual cycles. Larger cysts are less likely to go away on their own but depending upon what they look like, they are also most likely benign. I myself had to have a 9 cm ovarian cyst removed last year by laparoscopy (it was benign).

Get a copy of the report and see if you can read what it says. Usually a radiologist or gynecologist will give their impressions of what they think they are seeing at the bottom of the report. This is much more accurate than the CA-125 test. I know that when I was living with my cyst (I "watched" it with regular ultrasounds for 18 months) I was asked to have the CA-125 test and I was very nervous about this test because I knew that if it came out high I might freak out even though I may or may not have cancer. In my case, it came out low (around 7) but I know of a number of people who have had this test and scored very high when no cancer was present. It caused a lot of anxiety in these women for nothing and I don't like this at all. Evidently other things like menstruation or endometriosis can elevate the reading.

All this to say "Don't bank everything on this test". Take a look at the ultrasounds (oh and by the way, the ultrasound is the gold standard for ovarian cysts and not the CT scan .. this scan is good for other things) and if you don't understand something, come back and I or one of the other ladies on these boards (or gentlemen for that matter) may be able to help.

In the meantime, try not to get too anxious and to let your mind run away with you. June 30th is not very far away. Take the time to write down some questions that you will want to ask your doctor such as what the cyst looks like and what he thinks it is (and to have copies of the reports). I am not sure that the depo provera will work by the way. They have since done a number of studies on ovarian cysts and hormonal medication like the pill has no better an effect than simple watchful waiting to see if the cyst goes away on its own. Doctors used to believe that by shutting down the ovaries or regulating them with anti-ovulants, cysts will no longer form but if the cyst is an abnormal cyst (ie. not a normal follicular or corpus luteal cyst that comes and goes with your cycle) then it will not react to hormones .. it is a cyst like any other that could form anywhere on your body (kidney, liver etc..). Normal ovarian cysts that come and go with ovulation will go away on their own, with or without hormonal help and this has been proven in long term studies done on menopausal women (since usually more concern is shown when a menopausal woman has an ovarian cyst ... although they now know that up to 20% of menopausal women continue to grow cysts on their ovaries).

I hope that I have helped to empower you with information that you can use to discuss your situation with your doctor. It is normal to be scared but don't let your fear drive you crazy. At this point the chances are still strongly in your favour that it is not ovarian cancer. You may be recommended for surgery and if you are, you should seriously consider using a gynecological oncologist instead of a gynecologist, just in case. Studies have proven that in cases were ovarian cancer was present, if the woman was operated on by a gynecological oncologist as opposed to a gynecologist, she had a much better outcome. Most likely it will not be cancer but cover your bases because you never know for sure until that biopsy report comes back.

If you have any questions, feel free to come back and ask. I have found that talking to people who have had to go through the ovarian cyst waiting game (and believe me we are many) it helps to alleviate a lot of the anxiety that ends up being unwarranted.

Take good care of yourself.

((HUGS))

Estria

 
Old 06-24-2010, 02:08 PM   #3
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Join Date: Jun 2010
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DawnBehm HB User
Smile Re: CA 125 test and Ovarian Cysts

Thank you so much for your reply. This does arm me with better questions to ask and to make sure I get a copy of the reports you suggested. I thought I mentioned I was 38yrs old but might have thought I did.

I know with this GYNO he is way more clinical and doesn't pay much attention to whether or not he is freaking out his patients or not so as with all new Docs I will have to dig for answers from him which I have had plenty of practice over the years of having JRA. So far from what he acts like he doesn't seem to honestly believe that there is cancer there but as you say you never know for sure until getting the biopsy done.

The difficult part is If I ask for a gynecological oncologist surgeon I will have to travel outside my home town as we have none here but my bother knows that in his town which is 45mins north they have a center strictly focused on cancer so I might be able to get him to take me there for surgery. Plus I plan to possibly see another gynecologist that my Mother-in-law highly recommends as she see's them and they have a better beside manor.

One way or another we will figure out exactly what is happening with me and go from there. Thankfully I know how to keep my mind occupied through meditation and other activities to prevent an all out break down. I will keep you posted on what all I find out and thanks for getting back to me so quickly it does help to know many other women are in the same boat I am in.

"I must not fear. Fear is the Mind Killer"
Frank Hubert DUNE

My Motto,
Dawn Behm

 
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