1. < Breast Cancer

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?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

trixie1313 | @trixie1313 | Jul 25, 2022
In reply to @windyshores "@trixie1313 did you see my info upthread about the letrozole (Femara) insert saying that a 20%..." + (show)
@windyshores

@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.

Jump to this post

@windyshores
Thank you -- I went back to read your respond. By any chance, did your oncologist have any research on that that I could share with mine? At 4 years out, due to the neuroendocrine and because the ductal cancer broke through into my lymphatic system, they're talking about me staying on this for another 6 years! Being on the half dose, the fatigue is not as bad.

REPLY
1 reply
cctoo. Catherine Crowley | @cctoo | Jul 25, 2022
In reply to @auntieoakley "I cannot tell you how heartbreaking it is to hear that this has come back. The..." + (show)
@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?

Jump to this post

Chris, thank you for link....do not really want to know if spread.... Just do treatment! Psychologically would really upset me.

REPLY
callalloo | @callalloo | Jul 25, 2022
In reply to @cctoo "My onco type score was 8, took no als and now back in node say its..." + (show)
@cctoo

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 .

Jump to this post

I'm so sorry that you're having to deal with this. Worse because you likely assumed cancer stuff was in the past, over and done with. When will you have had the further tests and hear the physician(s) recommendations so you'll know what your options are?

REPLY
1 reply
callalloo | @callalloo | Jul 25, 2022

Did anyone have this ERA test? It's included on a list of tumor markers on the government website (link below).

Estrogen Receptor Assay (ERA)
A laboratory test of breast cancer tissue to determine the responsiveness of the tumor to endocrine therapy or to removal of the ovaries.

https://training.seer.cancer.gov/diagnostic/markers.html
REPLY
1 reply
cctoo. Catherine Crowley | @cctoo | Jul 25, 2022
In reply to @callalloo "I'm so sorry that you're having to deal with this. Worse because you likely assumed cancer..." + (show)
@callalloo

I'm so sorry that you're having to deal with this. Worse because you likely assumed cancer stuff was in the past, over and done with. When will you have had the further tests and hear the physician(s) recommendations so you'll know what your options are?

Jump to this post

I am afraid to have additional tests.

REPLY
2 replies
windyshores | @windyshores | Jul 26, 2022
In reply to @cctoo "My new oncologist ordered CT scan of lungs, abdomen and pelvis anand bone scan but allergic..." + (show)
@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!!!

Jump to this post

@cctoo I looked up Estrohalt, which "contains two potent aromatase inhibitors and one natural estrogen blocker." It is used to reduce excess estrogen/estrogen dominance which causes symptoms like breast tenderness or mood issues. It is not intended to eliminate estrogen from the adrenals entirely, the way the pharmaceutical aromatase inhibitors do.

If Estrohalt does have the same effectiveness, then the side effects presumably would be the same as the pharmaceutical AI's since side effects are from suppression of estrogen.

If Estrohalt does not have the same effectiveness, then your cancer is not being adequately treated.

I hope you will consider medications! Is there a way for you to determine if you are stage 4 w/spread?

Antivirals sound interesting but I assume they are not yet available for you.

REPLY
4 replies
cctoo. Catherine Crowley | @cctoo | Jul 26, 2022
In reply to @windyshores "@cctoo I looked up Estrohalt, which "contains two potent aromatase inhibitors and one natural estrogen blocker."..." + (show)
@windyshores

@cctoo I looked up Estrohalt, which "contains two potent aromatase inhibitors and one natural estrogen blocker." It is used to reduce excess estrogen/estrogen dominance which causes symptoms like breast tenderness or mood issues. It is not intended to eliminate estrogen from the adrenals entirely, the way the pharmaceutical aromatase inhibitors do.

If Estrohalt does have the same effectiveness, then the side effects presumably would be the same as the pharmaceutical AI's since side effects are from suppression of estrogen.

If Estrohalt does not have the same effectiveness, then your cancer is not being adequately treated.

I hope you will consider medications! Is there a way for you to determine if you are stage 4 w/spread?

Antivirals sound interesting but I assume they are not yet available for you.

Jump to this post

Will ask Dr for Lerazole....was never prescribed before ..have pain from biopsy for 2 months!! I have not had scans yet... I feel we should not say MY cancer... Just THE cancer....we do not want it so don't claim it so personally... In fact I read we should not put or give it so much power!! Been reading The Secret and Knockout

REPLY
1 reply
windyshores | @windyshores | Jul 26, 2022
In reply to @cctoo "Will ask Dr for Lerazole....was never prescribed before ..have pain from biopsy for 2 months!! I..." + (show)
@cctoo

Will ask Dr for Lerazole....was never prescribed before ..have pain from biopsy for 2 months!! I have not had scans yet... I feel we should not say MY cancer... Just THE cancer....we do not want it so don't claim it so personally... In fact I read we should not put or give it so much power!! Been reading The Secret and Knockout

Jump to this post

Similar to using the term "people with diabetes" versus "diabetic."

I get no emotional effect from using "the cancer" versus "my cancer," in fact, I personally feel better accepting it as mine. But understand completely.

Good luck with scans and treatment!

REPLY
Mentor
Chris, Volunteer Mentor | @auntieoakley | Jul 26, 2022
In reply to @cctoo "I am afraid to have additional tests." + (show)
@cctoo

I am afraid to have additional tests.

Jump to this post

My favorite doctor ever said to me “ the only good decision is an informed decision”. I only say this to encourage you to find out exactly what that nasty cancer is doing, so that at least when you make decisions you understand what it is you are doing and why. I remember feeling like I didn’t want to know, but for me that was a knee jerk reaction to something I felt I couldn’t control. Times have definitely changed as I now am an advocate for knowing all the ins and outs of the cancer and the treatments.
I wouldn’t want to not take a lifesaving medicine if it could give me a long, quality life, and I wouldn’t want to take a medicine that destroyed my quality of life and did not help me.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 26, 2022
In reply to @tygerrag2 "I’ve talked with 2 oncologist & they were not adamant about taking the AI med, left..." + (show)
@tygerrag2

I’ve talked with 2 oncologist & they were not adamant about taking the AI med, left it up to me. I’m 25 years post menopausal & feel there’s very little estrogen in my body anyway. Had no lymph inv. with clear margins. Oncotype was under 25. So, I’m hoping with some lifestyle changes & exercise I will be ok,

Jump to this post

Hi @tygerrag2 i thought I’d check in with you. As you can see, your question has unleashed quite the passionate discussion of over 80 messages so far. This discussion indicates a number of important things clearly to me.

1. There are risks and benefits to all treatments.
2. Treatment guidelines are determined by the most benefit to the majority of patients with a “tolerable” amount of side effects.
3. Each patient along with her oncology team weighs their personal benefits vs risks based on cancer type, tools that measure recurrence risk, medical history and co-conditions, age, health status, side effect tolerance AND personal preference.
4. Women think long and hard about their choices, and do their research to make the decision that is right for them.
5. Members of this forum are supportive and deeply care about their fellow bosom friends, and want to share their research and the choices they made.

Tyger, has this discussion thread helped you? Overwhelmed you? Do you have more questions or need clarification on anything you read here?

REPLY
View MoreView Less
Please sign in or register to post a reply.