Estrogen Receptive Question

[Teresa222]

I asked my ONC's nurse about testing me to see if my cancer is estrogen receptive.  She said, "testing for that is not in the standards of practice for ovarian cancer. I didn't know what to say. I am asking here because many of you have been tested AND are being treated accordingly.  Are there any good articles about this practice? I need suggestions on how to handle this with a successful outcome.
Teresa

[jlock]

I have been thinking about this myself and was considering asking my Onc,but I know my samples are probably long gone,plus I had my debulking surgery done about 500 miles away by another Onc and also almost 4 years ago.  I have heard they can also test the cells found from ascites too.  So I think the next time I have to be drained I'm gonna ask my Onc.  You are all so right,it can open a door to many more medications to help us.  If I can take a pill everyday and stay off infusion  that would just make my day!!  ~~~~~Joanne

[momofsandj]

Because of potential law suits they keep path slides pretty much indefinitely -- I just had mine reconfirmed and they had been at the hospital for almost 5 years.  They should still have them --- And I must have been tested because first they tried Tamoxifen after the beginning of the first recurrence, and now after the second recurrence they have me on Arimidex (which is definitely making me feel lousy but I'm afraid to stop in case it is working at keeping me stable)

[Tybear]

I had my slides tested over a year later and they still had them all. It can't hurt to ask...I think everyone should have this test done!
Becky

[marie3B]

How long do they keep the samples?  My surgery was over a year ago.  Is it too late??  It varies so much from doc to doc what kind of care we get.  It seems like if the technology is available, all should be allowed to benefit.  Marie

[msjazz]

my docto did test me, and I was estrogen receptive. She did her intern at mda, but that has been a long time. However I think she keeps in touch with what they are doing. If nothing else maybe you could have your regular dr request a sample and have it run somewhere he uses.  Lv D

[Tybear]

No, they have to have actual samples from your surgery of your tumors. It's done by a pathologist...you should ask your doctor about it if you think this is something you want to look in to.
Hope this helps,
Becky

[ellie72]

Is this a blood test we need??



or do they need to sample the actual tumour cells?


Thanks
Helen

[gah_70]

My slides were not tested until I started going to MD Anderson.  It is part of their protocol.  I am glad I did, because I found out my cancer is very estrogen receptive, and I have been on some sort of Aromatase Inhibitor since.  I was on Femara first, but it did not agree with me.  I am now on Aromasin, and got CA 125 results back yesterday.  It fell from 246 to 66 in ONE MONTH!!  Aromasin does cause bone pain, and I am beginning to feel like I'm 90, but if the drop in my CA 125 is due to it, then I'll just have to deal with the pain.  If your doctor won't test, then it might be a good idea to find someone else who will.  It is amazing the difference it can make in the course of treatment.

Gail

[crybaby1961]

I just home on my lunch hour and read your post.  You know I'm not really well educated with OC but I can help you search the internet tonight and see what I can come up with.
I found alot of times that I had questions concerning medical issues, I would print them out and tell the doctor.   When my mom was sick with this in the 90's, taxol was introduced as a possible wonder drug to combat OC, I brought an article in to my moms doc and the very next month they started her on it.  Anyway I can help you from over here I will.  
Prayers always to you.
Sharon

[marie3B]

MY ONC WONT TEST MINE EITHER.  I AM GOING TO INSIST ON MY NEXT APPT.  IT MAKES ME MAD THAT THEY TOLD YOU THAT WAS NOT STANDARD PRACTICE.  FOR HOW LONG NOW HAS STANDARD PRACTICE PROVEN TO BE NOT ENOUGH? I AM TYPING WITH ONE FINGER WHILE HOLDING A WIGGLY BABY. MARIE

[nyc lady]

One thing that my doctor always says to me....if you have questions, ask me, not the nurse....why not discuss this with your GYN/ONC.  There are so many different thought processes out there, why not cover all the bases.  And OvCa and Breast Ca can be closely related and estrogen receptors are found in both.  There are numerous drugs out there such as Tamoxifen, Armidex, Femara, etc.  I know someone on Armidex for OvCa for 7 years, the drug has not put her in remission but has kept her stable....STABLE for 7 years...that says something.

Good luck,
Pam

[Tybear]

I got the same response when I asked my doctor about being tested...actually, he laughed at me and told me I must have myself confused with breast cancer. Needless to say, he's no longer my doctor...
I actually had to pay to have my path slides sent to Johns Hopkins and they did the testing for me. I believe it was about $200 - $400 dollars...I can't quite remember. Bottom line - my results came back diffusely positive for estrogen. I immidiately stopped the Premarin I was taking (actually, I had stopped a couple weeks earlier because I just knew, deep down, I shouldn't be taking it) and now I'm on nothing.
I can't help but wonder how much my Premarin interfered with my chemo and if it had anything to do with my short remission. All I keep thinking is that I was feeding my cancer all along and had no idea.
It all makes sense really, because when i first noticed something wasn't right with me, it was about a month after I started taking the Pill again after having been off them for years. I can't help but wonder if the estrogen in the Pill triggered a growth in my cancer...
Anyways, I would highly recommend you have your tumors tested. If they do come back estrogen sensitive,  that opens up a whole new world of drugs you can use in your fight...
Take care,
Becky