Is there anyone that had estrogen positive cancer, without use of AI?

Posted by tygerrag2 @tygerrag2, Jul 14, 2022

Is there anyone with stage 1 breast cancer, estrogen positive that had a lumpectomy followed by radiation without any other treatment and has remained cancer free?

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@trixie1313

@auntieoakley
I'm 4 years out from diagnosis, original tumor was invasive ductal and second one at second surgery was neuroendocrine. I had uterus and ovaries removed at age 44 and am now 70, but even with ovaries gone my ER+ was 95%! I also had a thalamic stroke affecting my right arm and right leg two years ago so cannot go on Tamoxifen. God provides us many adventures...the trick is to keep going!

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Did you have any genetic testing done at the time of the original diagnosis?

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@callalloo

Did you have any genetic testing done at the time of the original diagnosis?

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@callalloo
Yes, but it didn't show any BRACA if that's what you are asking.

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@trixie1313

@callalloo
Yes, but it didn't show any BRACA if that's what you are asking.

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Some of us have had the OncotypeDX which is used to suggest whether chemo is useful but also yields a 'risk of loco-regional recurrence within 9 years' if one takes 'AIs or tamoxifen.' That number can be used to predict a theoretical risk if one doesn't take AIs or tamoxifen then.

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@callalloo

Some of us have had the OncotypeDX which is used to suggest whether chemo is useful but also yields a 'risk of loco-regional recurrence within 9 years' if one takes 'AIs or tamoxifen.' That number can be used to predict a theoretical risk if one doesn't take AIs or tamoxifen then.

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@callalloo
Not sure if this would help in my case due to the nature of neuroendocrine cancer of breast. Quite little is known about it beginning in breast.

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@trixie1313

@auntieoakley @sequoia
Good conversation from both of you...I appreciate all your information. I tried all three AIs and finally was able to keep on the exemestane 25 mg now for about 3 1/2 years but side effects were getting me down. My oncologist gave me a 2-month vacation from it and then I agreed to go back on, but at half dose. She told me there are no studies for being on half dose, but half dose was better than none. Since then, I'm starting to use whole dose on Sundays and now Wednesdays and that's probably where I'll stay at this time. If anyone has more information on half dose, I'd sure enjoy reading about it.

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@trixie1313 did you see my info upthread about the letrozole (Femara) insert saying that a 20% dose is effective in their studies? A half dose is a LOT better than no dose!

Side effects change over time, in my experience, and for me they settled down. Afte 3 1/2 years though your side effects seem settled in.

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@trixie1313

@auntieoakley
I'm 4 years out from diagnosis, original tumor was invasive ductal and second one at second surgery was neuroendocrine. I had uterus and ovaries removed at age 44 and am now 70, but even with ovaries gone my ER+ was 95%! I also had a thalamic stroke affecting my right arm and right leg two years ago so cannot go on Tamoxifen. God provides us many adventures...the trick is to keep going!

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@trixie1313 that 95% refers to the responsiveness of your cancer to estrogen, not how much estrogen your body produces 🙂

Also there are genetic tests for BRACA etc. which test your genetic vulnerability to cancer, and then there are tests like the Oncotype Dx which are termed "genomic" and assess the genetic material of a tumor. The Oncotype tells whether chemo will be of benefit and gives risk of recurrence with and without hormonal therapies. It is for breast cancer that is hormonal positive and HER2 negative.

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@auntieoakley

I cannot tell you how heartbreaking it is to hear that this has come back. The biopsies under the arm are the pits! (Pun intended) Because you can’t keep your arm still, and that skin has to move with it. Your next treatment options will be dictated by what your particular cancer looks like. You might want to check out this thread that has other folks on Ibrance and letrozole, I bet there will be some common ground there.
https://connect.mayoclinic.org/discussion/ibrance-and-letrozole-newly-diagnosed-treatment/
I would love to hear back from you, when do you hope to find out about the spread beyond the nodes? Did your doctor order a PET scan?

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My new oncologist ordered CT scan of lungs, abdomen and pelvis anand bone scan but allergic to contrast.. Other onc wanted pet scan..really don't want to know if it spread.... Just surgery to remove it.. Was 8 mm...am alone. Original stage 2 in 2016...I ordered Estrohalt..a natural alternative to the drugs als..read some fascinating things about viruses and study from Sloan Kettering and Stanford that anti vitals cured breast cancer in one week!!!

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@cctoo

My new oncologist ordered CT scan of lungs, abdomen and pelvis anand bone scan but allergic to contrast.. Other onc wanted pet scan..really don't want to know if it spread.... Just surgery to remove it.. Was 8 mm...am alone. Original stage 2 in 2016...I ordered Estrohalt..a natural alternative to the drugs als..read some fascinating things about viruses and study from Sloan Kettering and Stanford that anti vitals cured breast cancer in one week!!!

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Study ongoing with antiviral meds...but think of all the big business cancer is and loss of money, jobs, big cancer centers, etc if they could cure cancer with antiviral med!?!

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@callalloo

Some of us have had the OncotypeDX which is used to suggest whether chemo is useful but also yields a 'risk of loco-regional recurrence within 9 years' if one takes 'AIs or tamoxifen.' That number can be used to predict a theoretical risk if one doesn't take AIs or tamoxifen then.

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My onco type score was 8, took no als and now back in node say its slow growing... Am 86 soon so what to do?? No joint pain now .

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@sequoia

@cctoo what AIs did you try? What type of cancer and surgery? The AIs affected you very quickly. 😢. Every body is different and reacts differently. I pray that all goes well for you. God Bless. Please let us know how you are doing. We are here for you.

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Thank you all. Have only had awful biopsy so far!! Was found on ultrasound in enlarged node in armpit... No breast tumor.

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