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Elevated CA125 and complex cyst Elevated CA125 and complex cyst

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  #1  
Unread 02-02-2001, 09:02 AM
Elevated CA125 and complex cyst

Love this Board. This is my first attempt at posting, so I hope I get it right. I am scheduled for a complete hysterectomy with ovaries on March 26th. I have a complex cyst on one ovary and a large fibroid. Also, my CA125 level is 300. My main question is regarding the CA125. How elevated is this? Does it mean cancer at this level? My doc says he wants to be sure to do the hysterectomy abdominally so he can look around and be sure it isn't. I was told that this elevation could mean endometriosis and if it was cancer it would most likely be "in the thousands". I was on birth control pills for two months after they found the cyst to try and reduce it. It did reduce but the fibroid increased in size and the CA125 went up. My biggest concern is the elevated CA125. What exactly does this mean? Is there a site that has info regarding the CA125 test and it's results? Until last month, we had NO family history of cancer. My sister was just diagnosed with breast cancer. I am hoping I can keep the healthy ovary, assuming there is no sign of cancer. Another thing, I am from a big city and California but am now living in a small city in Miss. Like the city but am worried about how sophisticated the medical help is. I asked about keeping the cervix, he said no way. I do want to see about keeping the left ovary though. I am 42 and my mother has not even entered menopause yet. Sorry about the rambling novel, hope you can help. Thanks, Deb
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  #2  
Unread 02-02-2001, 09:42 AM
Elevated CA125 and complex cyst

Hello Deb!! So glad that you found the site and want you to know that you posted perfectly!
I think that it sounds like your doctor is really going about things on a good track. He wants to do an abdominal because he wants to be sure that he can take a good look at you internally and be sure to get anything that doesn't look healthy, including your ovaries. I have read that a lot of doctors try to save the ovaries, depending on the patient's age, so they normally go in and actually examine them before making a final decision. My doctor also did this, and I still have my ovaries. I was diagnosed with cervical cancer, and even though SOME women feel as though the cervix is an important part in sexual pleasure, I have had no problems at all without mine! Other than that, I am not aware of why anyone would want to keep it. The CA125 that was done should have been discussed with you in great detail by your doctor. A normal range is 0-35, so that would be another reason why your doctor is siding towards doing an abdominal..to get a good look and be sure that nothing is missed! After surgery, your organs will be sent to pathology and tested there. You should get your results from the pathology report in about a week after surgery.
I know that this is all a lot to grasp at once, but please know that you have tons of support here!! Please feel free to ask any questions that you may have. Most of all, never hesitate to ask your doctor anything considering that he knows your body and can actually see what's going on! Take care!
  #3  
Unread 02-02-2001, 09:55 PM
Elevated CA125 and complex cyst

Hi Deb,

I'm so glad you've found this site, it's wonderful isn't it!~ It's helped me so much! You'll meet a bunch of wonderful ladies here.

I'm glad your surgeon is planning on the abdominal to investigate further, it really is the best way to make absolutely sure whats really going on.

The CA125 test can be affected and evelated by several different reasons, among them as you have found endometriosis and ovarian cancer. The test itself is often not used by itself for an actual diagnosis due to the fact it can often be unreliable, it has been known to give false positives and negatives. Most Drs will order a follow up CT Scan or ultrasound to help with the testing procedures. It is helpful in tracking purposes however. Has your Dr suggestive doing any retesting in between now and your scheduled date to check and see if the results have remained stable?

As Cyd said, please feel free to ask about any questions you may have, there are alot of very helpful ladies here. And do ask your Dr lots and lots of questions, I took a notebook with all my questions to make sure I didn't forget anything.

Take care,
Vicki
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  #4  
Unread 02-03-2001, 07:38 AM
Elevated CA125 and complex cyst

Hi Deb,

I'm glad you fouen this site. It has been a great source of information and support for me. My situation is similar to yours. I'm 39 (actually read my post ovarian cyst...cancer posted not far below yours on the cancer concern board by evergoodx5) I've typed it n so many times here I'm sure others are getting tired of hearing it. Any way I have a large complex cyst.My CA125 was only 39. I also had an abdominal cat scan to look for any metastisis.Thankfully nothing showed up. My Dr. Keeps saying it's probably benign but there is no way to tell until they get in there and do a frozen section (which is done with results given during surgery). My Dr. is insistant on doing a TAH-BSO and will mke me sign a waiver not holding him responsible if I only let him take out the cyst and the 1 ovary. Of coarse that just makes me think he really suspects this to be cancer. Well now that I have done a lot of reading about ovarian cancer I want IT ALL OUT NOW!!!!! I have had to wait,well it wil be 6 weeks since I got the diagnosis til my surgery date 2-12- 01. I must say this has been the longest 6 weeks of my life. I would insist on having a CAT scan done to look for any spread if disease and if anything showed up they would mkost definitely have to move up your surgery date. I would also get a second opinion from another Dr. It's best to go to another Dr. affiliated with another hospital so they are not supporting thier college(spelling). Keep us posted and let us know how things are going. When you need to talk this is a great place to get people to listen and have to worry about upstetting them or burdening them like you do when talking to your family.
I'll keep you in my prayeres.

Debbie (Evergoodx5)
  #5  
Unread 02-04-2001, 09:22 PM
You are on track

Hi Deb,

I just had TAH/BSO for suspected ovarian cancer. (Benign quick section, still waiting for pathology.) It is absolutely necessary that this surgery be done abdominally. For one thing, your ovary must be removed in one piece and carefully so that it is not ruptured at the time of removal. A complex cyst is a possible cancerous one, and should be treated as such until proven otherwise.

As for the CA 125, yes it is considered unreliable. However, it is a marker and it is more reliable in older women. No, it would not necessarily be in the thousands if you had cancer. There are many things that can cause the reading you have, but your doctor has to consider the possibility that cancer is one of them.

Regarding keeping the healthy ovary, this is very controversial. Opinions certainly vary. My doctor would not leave an ovary in a woman who is done with childbearing if she had one ovary that was diseased in a way that either is or could develop into cancer. She says she doesn't want to have to go back in to get it later, especially since ovarian cancer is rarely diagnosed early.

What you have not mentioned is whether or not you are seeing a gynecologic oncologist. This is important, for it is this doctor who can stage cancer properly if it is found. You don't want to have a second surgery just to have that done!!

Good luck, hope things turn out as well for you as they have for me.
  #6  
Unread 02-08-2001, 02:22 AM
Elevated CA125 and complex cyst

Hi Deb

I too had a raised CA125 test which along with a dense cyst on one ovary showing up on the scan gave rise to concern. Mr dr said stay positive but be prepared for the worse!! Wow, thanks!!

Anyway I had TAH/BSO on 20/12/2000 and they found a huge dermoid cyst on one ovary 2 smaller dermoids on the other ovary and a handful of fibroids! (no wonder things had been so horrid for so long). The surgeon told me that everything looked benign but sent it to the lab to be sure. He also checked out all the major organs he could get at whilst I was on the table and said they looked fine. This week thank God I have had the all clear from the lab results. But as to why the test levels were raised I am non the wiser.

I hope that all will go well for you and that you will also get the all clear.

Take care
  #7  
Unread 02-08-2001, 07:08 PM
Elevated CA125 and complex cyst

Not to scare you, but my ca125 was only 237, and I had ovarian cancer of "low malignancy potential" (did not invade into the ovaries, and had not spread. I had it in both ovaries as well as a whole raft full of other messed up things in my girly guts. Had TAHBSO, and 6 weeks later, the CA125 was "less than 6" which is great indicator that we got it all. No chemo, no radiation, just careful watching, which translates to a pelvic exam every 4 months instead of once a year for the rest of my life. Glad I like my ob/gyn! Your doc was correct in telling you it may not indicate anything serious at all too.

My doc and his wife have been good friends for many years, and he was shocked and frightened. His first comment was that he had NO INTENTION of doing another bedside vigil for a dying friend, so I had better buck up and survive this! (Last year we sat by and held the hand of a friend while she died of a fast acting and untreatable cancer) He also fed me the be positive but prepare for the worst lecture. They have to. There is no way short of biopsy for them to really know what is going on. It sounds like your doctor is covering all the bases.
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