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CA 125 Blood Test Results (new here) CA 125 Blood Test Results (new here)

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Unread 11-28-2003, 07:31 PM
CA 125 Blood Test Results (new here)

i have had surgeries in the past....five yrs ago went through invitro and feel that started this ball rolling. Invitro failed, was in hosp for five days with serious infection, 1 1/2 yrs later had myomectomy for huge fibroids also had one of my two tubes untied.....last august had a "supposed" cyst removed from my ovary...turns out prev doc didn't untie the tube correctly and it was the size of a polish the tube was removed. now we have the other side with a cyst. Months they've been saying it is complex (had the ultrasound done at radiology group). This past week had it done at doc's office and radiology tech said it is a "simple" cyst. They also did blood tests and I am anemic, and the big ole CA125 blood test came back "slightly elevated"...supposed to be 35 mine was 39.5. Six mo's ago it was 22. So now I'm freaked out. Male doc (no offense), suggested wait three mo' the test again. I went bananas and said lets do a hysterectomy right now as I do not want to take any chances.

I'm 44, am definately done with having children (three over 21) and a 4 yr old grandson. Husband will support whatever I do.

I'm nervous about the CA125, anyone had experience with these? Going to family physician for the blood to be drawn and tested again to make sure it is a true reading.

Mary G.
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Unread 11-28-2003, 08:00 PM
CA 125 Blood Test Results (new here)

Hi Mary,

My only suggestion to you would be to see an oncologist/gynocologist. They are the experts in this field and if nothing else, will put your mind at ease. Your ca125 is normal, and yes, I know for a fact that the number can fluctuate.

Please keep us up to date.

Unread 11-28-2003, 08:04 PM

Just seems no doctor fully follows a patient see several in the same practice and everyone tells you something different.

I live relatively close to Philadelphia and close to Allentown, if anyone cares to email me privately with an excellent would be appreciated.

I'm just sick of being cut upon and sick of doctors acting as if it is no big deal.

Thanks again for your prompt reply.

Mary G.
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Unread 11-28-2003, 08:17 PM
CA 125 Blood Test Results (new here)

I am sorry that you are not getting any real definate answers from anyone. I live on Long Island and do have excellent doctors to recommend to you. Wish you lived closer.

Keep pushing for answers and information and check with an a specialist, and oncologist/gynocologist.

Unread 11-29-2003, 12:22 AM
CA 125 Blood Test Results (new here)

There are a few things other than ovarian CA that can elevate your CA-125, such as endo. Mine was 200 along with a (huge) complex cyst -- and turned out to be severe endometriosis. It went down to 9 by six months post-op, and hovers between 9 and 15 these days.

The number changes would be a concern, and I would echo Rosalie's urging to see the oncologists. Even if it's NOT cancer (and of course, we'd all hope not!) they have much more surgical training than the average GYN. Your history makes further surgery likely to be a bit tricky since scar tissue may make the internal "terrain" harder to sort out. My oncologists said that if I needed further surgery, even though I didn't have cancer, I should return to them as endometriosis also requires special surgical skill to contend with.

I know, first-hand, how worried you must be. In your search for an oncologist in your area, you may want to search the county medical society database, ask your current GYN and internist for recommendations, or call your regional cancer center and ask them to send you a list of their GYN oncology surgeons. Your health insurer should also be able to send you a list of doctors.

It may mean some driving for you and your family -- but there really is a difference in the outcome having your care handled by the experts in women's cancers and in complex GYN surgeries.

Hope you were able to relax somewhat and enjoy your holiday; I had to wait a month between my ultrasound and CA-125 results and my surgery. But CA-125's can be very misleading, even with a history of cysts like yours.

Unread 11-30-2003, 01:43 PM
CA 125 Blood Test Results (new here)


CA-125's can bounce around quite a bit. I actually think waiting and watching a bit isn't a bad idea - but I think 3 months may be a bit long. When we were watching my CA-125 before my hyst, I had the blood drawn about every 2 weeks - timed with my menstrual cycle (since at some parts of one's cycle endo and other things can be more active causing the numbers to bounce up). I also think you need to know what's the "end game" What's the elevation that triggers some action? What's the reduction that means you don't have to worry?

The decision tree for elevated ca-125's is very complex, and that's why I think (like nearly everyone else here) that you ought to get an opinion from a gyn onc.

Unread 11-30-2003, 04:08 PM

Thanks for your reply, I feel a bit better now. However, I just blew off a great interview for tomorrow morning. With everything going on, I just feel too rattled to interview well.

The fact that yours was 200 and was endometriosis, makes me feel better....(sorry if that sounds weird but I'm sure you know what I mean!)

I'm going to my regular doc tomorrow and then seeing about an appt with a GYN Oncologist.

Thanks for the advice.

I'll try to post with results.

Unread 11-30-2003, 08:59 PM
CA 125 Blood Test Results (new here)

Hi Mary

Perhaps you need to get a third opinion about the simple vs. complex ovarian cyst. Perfectly reasonable.
Are you aware of the ovarian cancer symptoms? Have any of them?
I am treated at Fox Chase Cancer in Phila. There is also a wonderful gyn/onc at Univ of Penn. You are surrounded with gyn/oncs in the Phila area. Go for it!! It can't hurt and will certainly ease your worry.
Best wishes to you.

oxoxo karenann
Unread 12-01-2003, 01:26 PM
Oncologists in PA

I am glad to see you posted a couple names. Let me check into it and try to get an appt (referral from my reg gyn).

Unread 12-02-2003, 01:31 PM
CA 125 Blood Test Results (new here)

Hi Mary G
They did 4 cancer markers when they took blood in my case. All were normal except for C-153 which was slightly higher than normal, but the oncologist said markers are not really specific and cannot really be used for diagnostic as their level can go up for reasons other than the presence of malignant tumour. The only way to ensure that there is no tumour in cases such as this is to go and look which is why I am having TAH with removal of both ovaries on the 4th.
I have to say that all this information came from the oncologist, the gyne I saw before did not say any of that, so I also think that you should speak to an oncologist to get another opinion.

All the best and lots of hugs

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