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very high CA-125
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An_223896 posted:
Hi,

I am so scared and confused. Just got back CA-125 results today and it is 339! Less than 2 weeks ago it was 97. Before that it has stayed around 41. Had been checking it every 3 to 4 months. It went from 41 to 97 in about 4 months. I have been seeing a gyno/oncologist since about 2007. He has a wonderful reputation, and everyone raves about him. I have also had 3 endometrial biopsies done that have all been fine. I originally went to him when an ob/gyn wanted to remove and ovary for a large cyst "just in case". He sent me for much better scans, and determined that there was no reason to remove anything.

I am 53 years old, in great health otherwise, supposedly post-menopausal, but still have cramps,and a weird light period about every 7 or 8 months. Endocrinologist's office says I'm still pre-menopausal. ??? So someone is wrong.

The gyno/oncologist had a CT done (no contrast by mistake), and it looked really good. Then he ordered an MRI 3T done with and without contrast, and it too looks fine. I have 4 uterine fibroids, the largest is 3.1 cm, so not too big. Also an ovarian cyst 1.8 x 1 cm. It is way smaller than it used to be. also a dialated fallopian tube with atrophic ovarian tissue. It says there is no worrisome enhancement.

I will see the doctor next week, but I am scared witless. They are telling me that I have nothing to worry about, and that they see elevated CA-125's all the time that have nothing to do with cancer. They say with a negative MRI, it will not be cancer. Should I believe them? I have wanted a hysterectomy since 2007, but the doc wanted to wait until the fibroids shrunk so he could do the surgery laproscopically, and not the old-fashioned way. He was right... the fibroids and the cyst have gotten smaller. The one on the other ovary has disappeared. They also said that ovarian cancer was the ONLY cancer to be determined by the CA-125, and would not indicate any other type of cancer.

In the meantime, I have had miserable cramping like when I was 20, very light, almost negligible bleeding, and it feels like I have to urinate all the time. It kind of comes and gose. Some days almost fine, and other days are very uncomfortable. They say that inflammation and/or infection can raise the CA-125, but so much in a few short days??

I am sorry for the long post, but I really value your communitie's opinions, stories, and advice. We are the ones living this.

Thanks so much! I would be so grateful for any advice!!
Reply
 
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2010july responded:
You are wise to be concerned. Ovarian Cancer is such a sneaky disease. If I were you I would be aggressive!
Your symptoms could be from the conditions already diagnosed or they could be something going on that are masked by the cysts and fibroid.
Having a mother with OC I am not willing to take any risks.
Good luck to you and please keep posting.
 
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letlaugh responded:
DON'T WALK.......RUN TO GET ANOTHER - SECOND OPINION ASAP!!!!!!!!!!!!!!!!!!!!!!!!!!

I WAS LUCKY..I ASKED FOR THE CA125 BECAUSE MY SISTER READ ABOUT THE TEST IN A SELF MAGAZINE AND I HAD FERTILITY TREATMENTS WITH HIGH DOSAGES OF GONAL F FOR 2 YEARS.

SO...I ASKED MY GYN FOR THE CA125 TEST. FORTUNATELY HE WAS WILLING TO GIVE ME THE TEST. RESULTS: 111.

TWO DAYS LATER HAD AN ULTRASOUND RADIOLOGIST SAW CYST/MASS, HAD A PET SCAN WITH CONTRAST DYE AND WITHIN 5 DAYS WAS OPERATED ON.

A GYNECOLOGIST ONCOLOGIST OPERATED ON ME AND I HAD A COMPLETE HYSTERECTOMY. I HAD OVARIAN CANCER - STAGE 1a GRADE C

One month after surgery I started chemotherapy. Had 6 treatments, every 21 days.

I have been told that I saved my own life. My sister saved my life.

What is important is that you listen to yourself and get the answers.........ovarian cancer is a SILENT KILLER.

I have been to many support groups, conferences to hear how women were incorrectly diagnosed and how they could have been spared such tragic results.

I don't mean to scare you but KNOWLEDGE IS POWER.

AGAIN PLEASE LISTEN TO YOUR GUT AND RUN TO FIND ANSWERS.....SOMETHING DOES NOT SOUND RIGHT.

Wishing you all the best.

LL
 
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An_223897 replied to 2010july's response:
Hello again,

It has been a long 3 weeks. When I last posted, my CA-125 had soared to 339. They had me tested again after I posted, and 6 days later it was 647, an astronomical jump! Very long, upsetting, nerve-wracking story short, I was set up for a full hysterectomy for December 3rd. The gyn/oncologist was very frustrated, and said that nothing that he saw on any scan or test correlated with the elevated CA-125, but that for peace of mind for me, he would do the surgery. He asked me if I would be upset at him, if he did the surgery and that wasn't the problem, and I told him that I would be grateful just to get it over with.

He decided to put me on Flagyl and Levaquin, super-strong antibiotics so that if there was infection, it would clear it up and then we would retest the CA-125. I was still uncomfortable and felt like I had cramps, but of course hadn't had a period in almost 10 months. The doctor also tried to get my insurance company to pay for a PET scan, but of course they wouldn't without a cancer diagnosis first. That of course, is ridiculous.

I finally was so frustrated, upset, and scared that I self-paid for a PET scan. It showed...absolutely nothing at all, anywhere. It was perfect. Expensive, but the best money I ever spent. So they rescheduled my surgery until after the first of the year, as the doctor felt the PET scan was conclusive for no cancer anywhere.

Then Thanksgiving week, I woke up and started a period that made up for the 10 months that I didn't have one. Yikes, what a shock! Then had a colonoscopy/endoscopy a few days after it was over, and both were fine.

So, yesterday I had another blood draw for CA-125, and just got the results. It is down to 109!! That is still high, but has certainly gone in the right direction. With all the research that I have done in the meantime, it seems that infection, inflammation (like a giant period!), and stress (oh, yes!) can make a CA-125 test soar. The doc's office told me today that if it was cancer that number would NOT go down, so I should quit worrying. I feel great again, with no pain. Now I have absolutely no idea what to do about the upcoming January surgery.

Any thoughts or suggestions? I hate to have an "unnecessary" surgery, only to find out down the road that I should have done it all along.

Thanks for listening!
 
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An_223898 replied to An_223897's response:
After some mild cramps on my right side (in March)but not all the time. I put off seeing my gyn. Then after a few months I had bloating so I stopped my multi vitamins.The few pounds of weight gain was "common" after menopause I thought. I went to my internist of 30 years and he sent me immediately for a trans vaginal sonogram. I had my blood taken. CA 125 was only 133. I had heard OV patients could have a CA125 in the thousands. My internist told me I had to get the cells in my pelvic area checked out. And hurry. I went to 4 gyn's. 3 out of 4 were worthless. The last one from Memorial Sloan Kettering said I had OV. I didn't feel sick and had no bleeding. I didn't even have the original pain on my right side. Other than a little indigestion I felt great. I listened to the doctor from MKCC. I went through a major hysterectomy, and a little piece of my liver, diaphragm and the lining of the peritoneal cavity. I was right I didn't have OV I had cancer of the Fallopian tubes Stage III. That was 4 years ago......I will celebrate my 3rd year without chemo on January 8th 2011. I can only suggest you find a doctor who only deals with cancer and sees these things all the time. And absolutely get a biopsy. I am 4 years in remission after the surgery and 16 months of Chemo. I went on an experimental program and while it wasn't a walk in the park it's behind me. FYI all of my CT scans were with contrast. New research is also finding out that OV may actually start in the Fallopian tubes so find yourself a doctor who is on top of their game. wishing you good luck and speedy recovery.


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