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Hi its been a while and suddenly i have questions again Hi its been a while and suddenly i have questions again

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Unread 01-13-2004, 10:42 AM
Hi its been a while and suddenly i have questions again

I have questions and am not sure where to post...
I went in for a complete hysterectomy back August 2000 due to horrendous periods (and just a feeling of general unwellness). The surgeon found I had Ovarian cancer but according to their diagnosis at the time, it was only in my ovaries - it had not gone beyond them (it was in both however).
I was put on HRT for the hot flashes and told to come back every 6 months for physicals. Well due to lack of medical insurance (and moving from Texas to Connecticut) I skipped this past year's physicals. I finally went in about 3 months ago. My new doc. did a CA-125 test along with pap test and a physical. My CA -125 was 10 , she retook it again recently and it was a 12. She thought (in the followup exam right before Christmas) she felt a lump where my right ovary used to be. They did an ultrasound - the results were that its probably nothing more than endometriosis or scar tissue. How can I still have endometriosis without ovaries, uterus or fallopian tubes? She told me to change my diet (I am a border line diabetic and my cholesterol is up ) - so I have radically changed it cutting out all desserts and way back on the meat - fresh veggies and fruits are my things. (The good news is I have lost almost 10 pounds).
She called me yesterday and told me to cut back on the HRT by half - she wants to retest me in 2 months. What is going on? When I asked her, she said not to be too concerned - this is all routine. What is routine about it? Shouldn't my CA-125 be zero since they took everything out? How will cutting back on the hormones help?
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Unread 01-13-2004, 10:51 AM
Hi its been a while and suddenly i have questions again


I'm not the world's expert, but here's a try on some of your questions.

--CA-125's measure a LOT of things. It may never reach zero. Any inflamatory process in the general abdominal area can cause a slight elevation. Endometriosis is well known in these parts for causing MAJOR elevations - into the 3 digits!!!

--Endometrosis can grow without your plumbing, so to speak. Many women here who have had surgery for endo have found this out. Little seedlings of endo can be left and grow.

--Estrogen fuels endo growth. Some docs will not give it to women with a history of endo. Some will not give it to women with a history of ovca. I took it for some months, and then stopped.

I'm glad you are seeing a doc. It sounds like she is really on top of things.

Try not to worry - it is hard - we cancer ladies can get all worked up about almost anything

Unread 01-13-2004, 11:16 AM
Hi its been a while and suddenly i have questions again

Thank you! You made my day! Now why couldn't the doctor have told me that - knowledge alleviates my fears, ignorance only increases it (for me anyways)

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Unread 01-13-2004, 01:19 PM
Hi its been a while and suddenly i have questions again

Hi Denise,

If it is your ca125 number that concerns you the most...RELAX You are well within the normal. Actually any number under 35 is normal and under 20 is excellent. I have never heard of anyone having a 0 ca125 number and what is normal for each of us could be different. Believe me, I know, this stupid number has been running my life for almost two years now.

Keep in touch.

Unread 01-13-2004, 02:28 PM

I've heard that even men (!) can have CA125! So if yours is that low, I'd sit back and relax. The test is very touchy and a four point variation from test to test is nothing to even think about. Just keep up as the Dr. Wants.

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