1. < Breast Cancer

100% ER+ 100% PR+ HERS2- How common is the 100% diagnosis?

Posted by janisbrede @janisbrede, May 2, 2023

When I went to Mayo for a second opinion they saw my initial diagnosis of 100%ER+ 100%PR+ and said that would probably change when they did their evaluation but it came back 100% ER and PR+ as well. Does this mean I am extremely sensitive to hormones? Anyone else 100%...seems drastic to me, not in a good way. I'm worried I should be a little more cautious with what I put in body to try to reduce hormones although I am on Tamoxifen to block hormone receptors. I just don't fully grasp how this is all connected.

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windyshores | @windyshores | May 2, 2023

You are fortunate to have that 100%, I would think. It might make the tamoxifen that much more effective. Your cancer is responsive to hormones and therefore to anti-hormone therapy.

Did you have a very low Oncotype as a result?

I had a grade 3 cancer with high ki67% and lymphovascular invasion but since my ER was 95% I did not need chemo. My Oncotype was low and so was my recurrence risk with hormonal therapy. I am 8 years out.

Your ER and PR should be very good things for you. What was your Oncotype score and risk of recurrence?

REPLY
2 replies
janisbrede | @janisbrede | May 2, 2023
In reply to @windyshores "You are fortunate to have that 100%, I would think. It might make the tamoxifen that..." + (show)
@windyshores

You are fortunate to have that 100%, I would think. It might make the tamoxifen that much more effective. Your cancer is responsive to hormones and therefore to anti-hormone therapy.

Did you have a very low Oncotype as a result?

I had a grade 3 cancer with high ki67% and lymphovascular invasion but since my ER was 95% I did not need chemo. My Oncotype was low and so was my recurrence risk with hormonal therapy. I am 8 years out.

Your ER and PR should be very good things for you. What was your Oncotype score and risk of recurrence?

Jump to this post

The Breast Clinic Team Member did say 100% would mean Tamoxifen would be more effective...but it still makes me wonder about cutting back on foods with hormones since my receptors are 100%.
My Oncotype is 14 and my Ki-67 is 1% so no chemo or radiation (I also had a double mastectomy). I'm not sure what that means for risk of recurrence as I am premenopausal, although Tamoxifen is probably throwing me into menopause as periods have been irregular since stating that.
I wish there was more research available on diet and cancer recurrence. I want to do what I can to reduce my risks while still living life without too much worry about this.

REPLY
3 replies
Mentor
Chris, Volunteer Mentor | @auntieoakley | May 2, 2023
In reply to @janisbrede "The Breast Clinic Team Member did say 100% would mean Tamoxifen would be more effective...but it..." + (show)
@janisbrede

The Breast Clinic Team Member did say 100% would mean Tamoxifen would be more effective...but it still makes me wonder about cutting back on foods with hormones since my receptors are 100%.
My Oncotype is 14 and my Ki-67 is 1% so no chemo or radiation (I also had a double mastectomy). I'm not sure what that means for risk of recurrence as I am premenopausal, although Tamoxifen is probably throwing me into menopause as periods have been irregular since stating that.
I wish there was more research available on diet and cancer recurrence. I want to do what I can to reduce my risks while still living life without too much worry about this.

Jump to this post

I certainly was not the same as you and didn’t even have all the tests you did since it was a time ago and they weren’t thought of yet.
That being said I did look at what I was eating. I didn’t make crazy unsustainable changes. I did start buying dairy that was hormone free, grass fed hormone free beef on the rare meat meal. I also eliminated commercial corn, we don’t eat a lot of processed stuff, but you would be surprised where you find it.
I didn’t give up my coffee, or my tea, even the fancy stuff on occasion. I did not give up pasta, or cake. 😂😂
Do you have planned changes that won’t cost you a happy quality of life?

REPLY
windyshores | @windyshores | May 2, 2023
In reply to @janisbrede "The Breast Clinic Team Member did say 100% would mean Tamoxifen would be more effective...but it..." + (show)
@janisbrede

The Breast Clinic Team Member did say 100% would mean Tamoxifen would be more effective...but it still makes me wonder about cutting back on foods with hormones since my receptors are 100%.
My Oncotype is 14 and my Ki-67 is 1% so no chemo or radiation (I also had a double mastectomy). I'm not sure what that means for risk of recurrence as I am premenopausal, although Tamoxifen is probably throwing me into menopause as periods have been irregular since stating that.
I wish there was more research available on diet and cancer recurrence. I want to do what I can to reduce my risks while still living life without too much worry about this.

Jump to this post

I used to think we should avoid soy with cancers that are responsive to estrogen, but have since that is not true. I am not sure what other foods are estrogenic. But the Tamoxifen addresses the estrogen receptors so my understanding- check with your doc- is that in some ways it doesn't matter what level of estrogen is floating around in your body, the receptors are being shut off by the med and the estrogen is not getting to any potential cancer cells. I hope your doc can clarify this.

Aromatase inhibitors used after menopause, on the other hand, deal with the amount of estrogen in the body, not the receptors, so estrogenic foods would seem to be more of an issue there, but I am not aware of any so maybe someone else can enlighten us.

REPLY
3 replies
sirene | @sirene | May 2, 2023
In reply to @windyshores "I used to think we should avoid soy with cancers that are responsive to estrogen, but..." + (show)
@windyshores

I used to think we should avoid soy with cancers that are responsive to estrogen, but have since that is not true. I am not sure what other foods are estrogenic. But the Tamoxifen addresses the estrogen receptors so my understanding- check with your doc- is that in some ways it doesn't matter what level of estrogen is floating around in your body, the receptors are being shut off by the med and the estrogen is not getting to any potential cancer cells. I hope your doc can clarify this.

Aromatase inhibitors used after menopause, on the other hand, deal with the amount of estrogen in the body, not the receptors, so estrogenic foods would seem to be more of an issue there, but I am not aware of any so maybe someone else can enlighten us.

Jump to this post

Alcohol, beeef, corn oil, grapefruit, lemons, limes, oranges, tangerines, grilled, bbq's or smoked meats or fish. Safflower oil, sunflower oil, soybean oil. Check the website foodforbreast.com

REPLY
1 reply
cctoo. Catherine Crowley | @cctoo | May 3, 2023

I am 100% too at age 86!! How is this possible? in 2016 I was 70% !!! Don't understand either. Thinking of getting hormone. leels checked in blood test from.alternative MD. Able to balance correctly

REPLY
cctoo. Catherine Crowley | @cctoo | May 3, 2023
In reply to @windyshores "You are fortunate to have that 100%, I would think. It might make the tamoxifen that..." + (show)
@windyshores

You are fortunate to have that 100%, I would think. It might make the tamoxifen that much more effective. Your cancer is responsive to hormones and therefore to anti-hormone therapy.

Did you have a very low Oncotype as a result?

I had a grade 3 cancer with high ki67% and lymphovascular invasion but since my ER was 95% I did not need chemo. My Oncotype was low and so was my recurrence risk with hormonal therapy. I am 8 years out.

Your ER and PR should be very good things for you. What was your Oncotype score and risk of recurrence?

Jump to this post

I am 100% oo now too but wss 70% with low 8 on oncotype snd 5% ki67. on 2016!!! But had recurring in armpit nodes 5 years. dealing with now couldn't tolerate sny hormone blocker and didn't do radiation. Now they say need radiation and PET scan, ct and bone scan. agrsid what to do?

REPLY
cctoo. Catherine Crowley | @cctoo | May 3, 2023
In reply to @janisbrede "The Breast Clinic Team Member did say 100% would mean Tamoxifen would be more effective...but it..." + (show)
@janisbrede

The Breast Clinic Team Member did say 100% would mean Tamoxifen would be more effective...but it still makes me wonder about cutting back on foods with hormones since my receptors are 100%.
My Oncotype is 14 and my Ki-67 is 1% so no chemo or radiation (I also had a double mastectomy). I'm not sure what that means for risk of recurrence as I am premenopausal, although Tamoxifen is probably throwing me into menopause as periods have been irregular since stating that.
I wish there was more research available on diet and cancer recurrence. I want to do what I can to reduce my risks while still living life without too much worry about this.

Jump to this post

No bottled water in plastic!! lots of greens!! I trad

REPLY
cctoo. Catherine Crowley | @cctoo | May 3, 2023
In reply to @windyshores "I used to think we should avoid soy with cancers that are responsive to estrogen, but..." + (show)
@windyshores

I used to think we should avoid soy with cancers that are responsive to estrogen, but have since that is not true. I am not sure what other foods are estrogenic. But the Tamoxifen addresses the estrogen receptors so my understanding- check with your doc- is that in some ways it doesn't matter what level of estrogen is floating around in your body, the receptors are being shut off by the med and the estrogen is not getting to any potential cancer cells. I hope your doc can clarify this.

Aromatase inhibitors used after menopause, on the other hand, deal with the amount of estrogen in the body, not the receptors, so estrogenic foods would seem to be more of an issue there, but I am not aware of any so maybe someone else can enlighten us.

Jump to this post

I would think that after !menopause we would have ledd estrogen bu at 86 Im 100% er positive

REPLY
1 reply
eku | @eku | May 3, 2023
In reply to @sirene "Alcohol, beeef, corn oil, grapefruit, lemons, limes, oranges, tangerines, grilled, bbq's or smoked meats or fish...." + (show)
@sirene

Alcohol, beeef, corn oil, grapefruit, lemons, limes, oranges, tangerines, grilled, bbq's or smoked meats or fish. Safflower oil, sunflower oil, soybean oil. Check the website foodforbreast.com

Jump to this post

could it be https://foodforbreastcancer.com/ ?

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