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Ovca estrogen receptors Ovca estrogen receptors

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Unread 08-25-2002, 06:14 PM
Ovca estrogen receptors

The backround:
1. The gyn orders estraidol before the pathology comes back that the ovarian tumors were malignant.
2. The oncologist says no estrogen. Okay, I expected that. 18 week chemo ensues.
3. About halfway through chemo I complain of major hotflashes and insomnia.
4. Onc says take estrogen. I say, "I thought you said no estrogen - so what's changed?". She says, I just wanted to see how you tolerated chemo and you are doing well. I start taking estrogen.
5. 6 or so weeks later, after learning about this stuff on wonderful message boards like this one, I ask if tumor was estrogen receptive. She (oncologist) says "If we thought it was estrogen receptive we wouldn't have you on estrogen".
6. I stew and fume at the non-answer she gave me to my question. :burning:
7. I put a request in writing for pathology report on whether tumor was estrogen receptive, tumor assay (if done) and CA-125 history.
8. They send me original pathology that says ovaries were malignant blah blah blah, ca 125's, no assay (I expected that) and no mention of estrogen receptivity.
9. I call nurse and ask why (of course this is all done via voicemail). I quit the estrogen as all of this is making me nervous.
10. The nurse and I finally talk and I tell her the reason I want to know the estrogen receptivity, that the onc dismissed my question and it freaks me out to be taking estrogen when no one has checked to see about the estrogen receptivity. She says they will check with pathology and have the test run.
11. Results are supposed to be back this week.

My question to all of you is, did your oncologists run this test automatically or did you have to request it? Did your doctor discuss the estrogen receptor stuff when discussing HRT/no HRT from the start? I am evaluating just how lame my oncologist appears to be, as well as validating how I am feeling about it.
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Unread 08-25-2002, 06:46 PM
Ovca estrogen receptors

Hi Diane,
I sure understand your frustration.
I had Ovca as well, and I have been on estrogen for 15 months now. I am not thrilled with taking it with all the news of late, but I have faith in my doctors that they did all the checking and that I am ok to take it. Mine is in a gel form that I rub into my arms daily.

My onc. admitted he didn't know alot about or doesn't get too involved in HRT so he referred me back to my gyn who did my surgery with him in attendance.
When she put me on the estrogen, ( which incidentially I am taking mainly because of my low bone density as I have osteopenia), she said she ran my case by an endocrinologist and he said I would be fine taking the estrogen. So.....I have faith that between my onc. my gyn and this endocrinologist, I am safe to take it.

With all the negative news now about estrogen though I plan to have a good talk with my gyn when I see her in Oct. I have a feeling that taking it short term will be fine, but I want to hear her opinion on this.

My feeling is that surely that is one of the things they do check before recommending estrogen in cases of Ovca. I never even asked if mine was estrogen receptive to be honest. I really would hope they would do that check before even suggesting it.

Keep at them till you get all your questions answered Diane. They must know you are very concerned about this and its an important issue.

Unread 08-25-2002, 07:03 PM
Ovca estrogen receptors

s Diane

Hormone receptor tests are not routinely done on ovarian cancer tumors. Why? I have not a clue. Your onc is not remiss. It just doesn't get done. Most people with ovarian cancer on estrogen have not had the receptor test done either. I do not want estrogen either way, so I have never requested the test. A tumor specimen from your surgery is saved for quite a long time. Request to have it done. This test is done on all breast cancer tumors.
Johns Hopkins will even perform tumor assays on ovarian tumors. This test shows what type chemo will be most effective on your tumor. They probably perform this test more often with recurrences.
I guess ovca patients are such a little group, they strive to keep our treatments cost effective.

PS I am getting involved in the NOCC Pa chapter. Here I learned that the Dept of Defense just gave ovarian cancer research 12 billion dollars.
I found that pretty amazing. The Dept of Defense no less. Apparently ovca is on the path to become the politically correct disease in Congress. Wouldn't this be just wonderful.

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Unread 08-25-2002, 07:22 PM
My Experience

No, no estrogen receptivity done on me. When I told the RN practitioner (whom I had while I had oncologist #1) about the hot flashes I had, she recommended Paxil for that. I was dead set against Paxil. I was told no estrogen. Later, I had an exam with the gynecologist (whom I hope I never have to see again...another novel--and no, not a gyn/onc--I never heard of those until too late) and when he asked, I mentioned hot flashes and he said he would give me a prescription for estrogen! I gasped "NO! I have ovarian cancer!" and he said, "Oh, it doesn't matter in ovarian cancer; that's just for breast cancer. You can have estrogen." Not that it did me any good, but I walked out of there without a prescription for estrogen. I don't know--you would think there'd be consensus and TESTING but there doesn't seem to be (and another large board of mine bears this out). Diane, I am glad you are having the test run so that you can make a well-informed decision with your doctor, You know--this gets scary sometimes, doesn't it!
Unread 08-26-2002, 10:21 AM
Ovca estrogen receptors

There seems to be a lot of confusion on the estrogen thing. After my hyst for OVCA I was put on HRT by my Onc/Gyn tried different ones. Felt worse on HRT than off. Read up, studied, etc the effects of estrogen on my type of tumor and it's definitely estrogen feeding. I freaked out! So I took myself off of it, printed all the info I had and took it to my Onc. He was upset my Gyn/Onc put me on it and was glad I stopped taking it. (I was only on it for about 6 months). I switched back to my regular GYN and he was glad I had stopped also.

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