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.

sequoia | @sequoia | Jul 28, 2022
In reply to @windyshores "@trixie1313 I think oncologists tend to be open to alternating days with AI's. You can bring..." + (show)
@windyshores

@trixie1313 I think oncologists tend to be open to alternating days with AI's. You can bring the Femara insert that I posted, that said 20% of the usual dose is effective in making estrogen undetectable.

My cancer also got into the lymph system (LVI). But at 5 years I had a Breast Cancer Index test that showed that I would have no benefit from further meds. I originally wanted 10 years.

My docs had not heard of that test but it is now in the NCCN guidelines. Have you had it?

I don't know how that applies to the neuroendocrine...

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@windyshores , I’m not familiar with the Breast Cancer Index test. I’m almost 3 years post mastectomy. Took Anastrozole 2 1/2 yrs. Taking a break from it going on 3 months. Would the test be beneficial for me to request from my oncologist?
Also when speaking about Femara what did you mean by ‘estrogen undetected’? When I have had estrogen tests done as my insistence, results come babe ‘< 10’ which means nothing to me as o diner have baseline of pre medication value. Dr tells me “that’s good”. 🤷‍♀️🤔

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1 reply
windyshores | @windyshores | Jul 28, 2022
In reply to @sequoia "@windyshores , I’m not familiar with the Breast Cancer Index test. I’m almost 3 years post..." + (show)
@sequoia

@windyshores , I’m not familiar with the Breast Cancer Index test. I’m almost 3 years post mastectomy. Took Anastrozole 2 1/2 yrs. Taking a break from it going on 3 months. Would the test be beneficial for me to request from my oncologist?
Also when speaking about Femara what did you mean by ‘estrogen undetected’? When I have had estrogen tests done as my insistence, results come babe ‘< 10’ which means nothing to me as o diner have baseline of pre medication value. Dr tells me “that’s good”. 🤷‍♀️🤔

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@sequoia I would ask your doctor. I would also call the BCI company (Biotheranostics). I was told it was intended for those who took AI's for 5 years but maybe it would be allowed and helpful for you.

The language in the Femara insert uses the word "undetectable." I don't know what <10 means in that regard. It sounds like your levels were either low, negligible or undetectable!

https://www.breastcancerindex.com/resources-providers?gclid=e7a384d02f0e1c4a661be632d88c7891&gclsrc=3p.ds&msclkid=e7a384d02f0e1c4a661be632d88c7891&utm_source=bing&utm_medium=cpc&utm_campaign=Biotheranostics_BCI_HCP&utm_term=Breast%20Cancer%20Index&utm_content=hcp_breast%20cancer
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sequoia | @sequoia | Jul 28, 2022
In reply to @windyshores "@sequoia I would ask your doctor. I would also call the BCI company (Biotheranostics). I was..." + (show)
@windyshores

@sequoia I would ask your doctor. I would also call the BCI company (Biotheranostics). I was told it was intended for those who took AI's for 5 years but maybe it would be allowed and helpful for you.

The language in the Femara insert uses the word "undetectable." I don't know what <10 means in that regard. It sounds like your levels were either low, negligible or undetectable!

https://www.breastcancerindex.com/resources-providers?gclid=e7a384d02f0e1c4a661be632d88c7891&gclsrc=3p.ds&msclkid=e7a384d02f0e1c4a661be632d88c7891&utm_source=bing&utm_medium=cpc&utm_campaign=Biotheranostics_BCI_HCP&utm_term=Breast%20Cancer%20Index&utm_content=hcp_breast%20cancer

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@windyshores Thank you fir the information. I hope my levels are ‘low, negligible or undetectable’. I see my oncologist at end of month so I’ll let you know what discussions occurred.

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orsejr | @orsejr | Jul 29, 2022

Can people who respond to this post stick to the original topic which was “has anyone with early staged breast cancer not used hormone therapy .”

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sequoia | @sequoia | Jul 29, 2022
In reply to @lisajoann "I totally understand and believe that some people have tried and cannot tolerate these meds. My..." + (show)
@lisajoann

I totally understand and believe that some people have tried and cannot tolerate these meds.
My issue is those who try to influence those who are struggling with a decision by being only negative and claiming there is no proof that these meds actually work!
Sometimes we need to encourage others who are trying and having difficulty… sometimes it just takes time.♥️It could save their life.

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I like to read of others experiences w/ cancer, surgeries& treatments as I learn from them snd educate myself to ask intelligent questions to my oncologist and also to research. We all take in information differently, but I haven’t, me personally, felt it read posts that people are trying to influence readers one way or another. It is information sharing. Forums work that way. Some ppl have a high fear factor and they personally’could’ be influenced, but the person posting the comments or info link has only good intentions. Our Mayo Clinic Forum is made up of good people, only wanting the best for everyone. ❤️

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sequoia | @sequoia | Jul 29, 2022
In reply to @windyshores "Regarding dose for AI's: if the med is effective at, say, 20% of usual dose, meaning..." + (show)
@windyshores

Regarding dose for AI's: if the med is effective at, say, 20% of usual dose, meaning it suppresses estrogen produced by the adrenals post-menopause- then wouldn't the side effects be the same regardless of dose? Are all the side effects from estrogen suppression?

My oncologist did say that I could do alternate days to reduce side effects, but I still wonder how a reduced dose would reduce side effects when estrogen suppression would happen with alternate days as well.

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Maybe 20% is the correct effective dosage and 100% is overdose and brings on side effects affecting your body in other ways that is causing the side effects. Just guessing, as why would doctor prescribe higher dose that 20% is effective.

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lisajoann | @lisajoann | Jul 29, 2022
In reply to @sequoia "I like to read of others experiences w/ cancer, surgeries& treatments as I learn from them..." + (show)
@sequoia

I like to read of others experiences w/ cancer, surgeries& treatments as I learn from them snd educate myself to ask intelligent questions to my oncologist and also to research. We all take in information differently, but I haven’t, me personally, felt it read posts that people are trying to influence readers one way or another. It is information sharing. Forums work that way. Some ppl have a high fear factor and they personally’could’ be influenced, but the person posting the comments or info link has only good intentions. Our Mayo Clinic Forum is made up of good people, only wanting the best for everyone. ❤️

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As you said… people all take information differently! Some people are easily influenced and using words like “ there is no proof” can be dangerous for people struggling with a decision. ♥️

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1 reply
callalloo | @callalloo | Jul 30, 2022
In reply to @lisajoann "As you said… people all take information differently! Some people are easily influenced and using words..." + (show)
@lisajoann

As you said… people all take information differently! Some people are easily influenced and using words like “ there is no proof” can be dangerous for people struggling with a decision. ♥️

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Hopefully people take anything they read here and elsewhere back to their doctors to get their insights before making these serious decisions. Or get second opinions from other doctors. Especially when a decision might be irrevocable.

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cashemire | @cashemire | Aug 3, 2022

Just found this site and discussion. I had stage 1 IDC 2.5 yrs ago, 2 cm (but 2 smaller lumps also detected when operated) lumpectomy followed by radiation for 3 wks.
AI was recommended, but as my Oncotype score was low (10) and I already was borderline osteoporosis, and hearing all the bad side effects, after consultation with my radio oncologist I decided to forego AIs. Lo and behold, 2.5 yrs later (now!) I just underwent 5 days ago a mastectomy due to recurrence in same place.
I underwent CT and bone scans and fortunately no spread detected. Am waiting to hear about nodes (axillary dissection). I will never know if taking the AI would have prevented this recurrence. I've almost convinced myself that it would not have. After I get thru this post-op discomfort, will indeed have to take the AIs. Worrying about spreading was terrifying.

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2 replies
windyshores | @windyshores | Aug 4, 2022
In reply to @cashemire "Just found this site and discussion. I had stage 1 IDC 2.5 yrs ago, 2 cm..." + (show)
@cashemire

Just found this site and discussion. I had stage 1 IDC 2.5 yrs ago, 2 cm (but 2 smaller lumps also detected when operated) lumpectomy followed by radiation for 3 wks.
AI was recommended, but as my Oncotype score was low (10) and I already was borderline osteoporosis, and hearing all the bad side effects, after consultation with my radio oncologist I decided to forego AIs. Lo and behold, 2.5 yrs later (now!) I just underwent 5 days ago a mastectomy due to recurrence in same place.
I underwent CT and bone scans and fortunately no spread detected. Am waiting to hear about nodes (axillary dissection). I will never know if taking the AI would have prevented this recurrence. I've almost convinced myself that it would not have. After I get thru this post-op discomfort, will indeed have to take the AIs. Worrying about spreading was terrifying.

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@cashemire so sorry you had this recurrence and hope all tests remain negative and reassuring.

I had an Oncotype score of 8 and already had osteoporosis, but did 5 years. I was unable to take Reclast (my doc did not want to risk afib) and ended up with fractures.

We basically choose our risks. Your cancer recurrence risk was low, and fracture risk high. You made a reasonable choice. The real problem is that we are left choosing between cancer and fractures- however small either risk might be. Fractures are potentially a bigger deal than I thought, to be honest. If I had known, I might have done things differently.

You should be fine taking an aromatase inhibitor at this point and there will be no doubt in your mind, so you will be committed to it. I hope you will let us know how things go!

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