Anonymous wrote:I had a mascetomy at 40 due to DCIS dx and pathology found it was actually Stage 1. It was hormone receptor positive cancer, so now I'm on Tamoxifen and oncologist says that I should never take HRT.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:It's contained cancer. If it busts out of the duct it's invasive cancer. Then it can spread. So the don't say cancer people want women to wait until it becomes potentially life threatening if not all caught. That's rationing.

Exactly. My DCIS was not detected by annual mammograms or ultrasounds. I only discovered it after it busted out of the duct and formed a tumor in the tissue.

At that point wasn't it not DCIS anymore?

Yes. But if it had been detected earlier, I would have had it removed, which would have been far preferable to waiting until it became invasive cancer.

Once DCIS breaks out of the ducts, the risk levels jump considerably, even if you catch it early.

I don’t care whether you call DCIS cancer or pre cancer or cancer stage zero. Whatever the name, I’d recommend removing it ASAP. You really do not want invasive cancer!

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:It's contained cancer. If it busts out of the duct it's invasive cancer. Then it can spread. So the don't say cancer people want women to wait until it becomes potentially life threatening if not all caught. That's rationing.

Exactly. My DCIS was not detected by annual mammograms or ultrasounds. I only discovered it after it busted out of the duct and formed a tumor in the tissue.

At that point wasn't it not DCIS anymore?

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I don’t have anyone to recommend, but I think it’s great that you are exploring it.

Estrogen dies not cause breast cancer, although it does feed it if you already have it. There are so many lifestyle choices we can make to lower our risk of breast cancer (not talking about HRT, more diet, exercise, alcohol etc.). People are unwilling to do these things, but shout cancer when anyone brings up HRT, which actually does have a lot of health benefits. Sure, you have to be diligent regarding lowering risk of and screening for breast cancer, but you should be doing that anyway.

To those saying no, read the book estrogen matters by Avron Bluming.

DCIS is breast cancer so I am not exactly following.

there are doctors questioning whether we should be describing DCIS as cancer.

https://ascopost.com/issues/march-10-2024/reframing-dcis-as-an-opportunity-for-cancer-prevention/

Taking the Word ‘Cancer’ Out of DCIS

Telling a woman she has breast cancer is a life-altering diagnosis. To potentially, albeit unknowingly, use those words to describe DCIS and send her down the path of potentially morbid procedures is life-altering as well. It would likely be helpful to women with DCIS to take the word "cancer" out of the diagnosis, since DCIS, by itself, is not life-threatening.

This approach is true for other cancers, such as Gleason 6 prostate cancer as well. For example, Gleason 6 prostate cancer is a disease that can be surveilled, and we have called for the elimination of the word "cancer" in both diseases.

We need to rethink what we call cancer and remember our Hippocratic decree to "first, do no harm." Let’s continue to challenge our understanding of DCIS and evolve to a finer-tuned classification and treatment system for our patients. Now is the time to find a better path forward for all women with DCIS and to start thinking about the diagnosis as a window of opportunity for prevention. 

The women for whom DCIS can be watched and not treated are those who are very old and grade 1.

Anonymous wrote:

Anonymous wrote:It's contained cancer. If it busts out of the duct it's invasive cancer. Then it can spread. So the don't say cancer people want women to wait until it becomes potentially life threatening if not all caught. That's rationing.

Exactly. My DCIS was not detected by annual mammograms or ultrasounds. I only discovered it after it busted out of the duct and formed a tumor in the tissue.

Anonymous wrote:It's contained cancer. If it busts out of the duct it's invasive cancer. Then it can spread. So the don't say cancer people want women to wait until it becomes potentially life threatening if not all caught. That's rationing.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP here. If I were most worried about hot flashes I would take one of the new drugs that treats them. I am most worried about brain fog and osteoporosis. The way I look at it, there are better breast cancer treatments than there are osteoporosis treatments. My mom broke her hip at 65 and was never the same. And if I lose my job due to brain fog, that will have its own negative health consequences.

I’m four years post- ER/PR+ stage one invasive breast cancer (undetected DCIS that escaped the milk ducts.) Tamoxifen made me crazy, so I do quarterly Lupron shots with a daily AI to minimize estrogen.

You’re 100% right about the side-effects of this cancer-prevention regime. My brain fog is significant, especially when it comes to executive function (task planning and execution, time management, and working memory.)

Also, in the past four years, my bone density dropped - first to osteopenia and now osteoporosis in one spot (the others are still osteopenia.) The endocrinologist has recommended an annual Reclast infusion to prevent further bone loss (and for some, it reverses some of the recent loss, so that’s a possibility.)

I share this for two reasons: first, to agree with you about the large and real downsides of blocking estrogen post-cancer; and second, to give you a heads up about Reclast, if osteoporosis remains a concern. It’s a proven treatment that has been around a long time. (My friend’s doctor actually had her start annual infusions as soon as she hit osteopenia, rather than wait to see whether there would be further bone loss. I wish I had known that was an option - my doctor never mentioned it, and I only learned about it after the fact.)

OP here, thanks - who do you see for your osteoporosis treatment?

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I don’t have anyone to recommend, but I think it’s great that you are exploring it.

Estrogen dies not cause breast cancer, although it does feed it if you already have it. There are so many lifestyle choices we can make to lower our risk of breast cancer (not talking about HRT, more diet, exercise, alcohol etc.). People are unwilling to do these things, but shout cancer when anyone brings up HRT, which actually does have a lot of health benefits. Sure, you have to be diligent regarding lowering risk of and screening for breast cancer, but you should be doing that anyway.

To those saying no, read the book estrogen matters by Avron Bluming.

DCIS is breast cancer so I am not exactly following.

there are doctors questioning whether we should be describing DCIS as cancer.

https://ascopost.com/issues/march-10-2024/reframing-dcis-as-an-opportunity-for-cancer-prevention/

Taking the Word ‘Cancer’ Out of DCIS

Telling a woman she has breast cancer is a life-altering diagnosis. To potentially, albeit unknowingly, use those words to describe DCIS and send her down the path of potentially morbid procedures is life-altering as well. It would likely be helpful to women with DCIS to take the word "cancer" out of the diagnosis, since DCIS, by itself, is not life-threatening.

This approach is true for other cancers, such as Gleason 6 prostate cancer as well. For example, Gleason 6 prostate cancer is a disease that can be surveilled, and we have called for the elimination of the word "cancer" in both diseases.

We need to rethink what we call cancer and remember our Hippocratic decree to "first, do no harm." Let’s continue to challenge our understanding of DCIS and evolve to a finer-tuned classification and treatment system for our patients. Now is the time to find a better path forward for all women with DCIS and to start thinking about the diagnosis as a window of opportunity for prevention. 

Anonymous wrote:

Anonymous wrote:It's contained cancer. If it busts out of the duct it's invasive cancer. Then it can spread. So the don't say cancer people want women to wait until it becomes potentially life threatening if not all caught. That's rationing.

You can remove it via a lumpectomy without calling it cancer. I’ve had moles removed that were irregular and at risk of becoming melanoma but weren’t called cancer.

Anonymous wrote:It's contained cancer. If it busts out of the duct it's invasive cancer. Then it can spread. So the don't say cancer people want women to wait until it becomes potentially life threatening if not all caught. That's rationing.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I don’t have anyone to recommend, but I think it’s great that you are exploring it.

Estrogen dies not cause breast cancer, although it does feed it if you already have it. There are so many lifestyle choices we can make to lower our risk of breast cancer (not talking about HRT, more diet, exercise, alcohol etc.). People are unwilling to do these things, but shout cancer when anyone brings up HRT, which actually does have a lot of health benefits. Sure, you have to be diligent regarding lowering risk of and screening for breast cancer, but you should be doing that anyway.

To those saying no, read the book estrogen matters by Avron Bluming.

DCIS is breast cancer so I am not exactly following.

there are doctors questioning whether we should be describing DCIS as cancer.

https://ascopost.com/issues/march-10-2024/reframing-dcis-as-an-opportunity-for-cancer-prevention/

Taking the Word ‘Cancer’ Out of DCIS

Telling a woman she has breast cancer is a life-altering diagnosis. To potentially, albeit unknowingly, use those words to describe DCIS and send her down the path of potentially morbid procedures is life-altering as well. It would likely be helpful to women with DCIS to take the word "cancer" out of the diagnosis, since DCIS, by itself, is not life-threatening.

This approach is true for other cancers, such as Gleason 6 prostate cancer as well. For example, Gleason 6 prostate cancer is a disease that can be surveilled, and we have called for the elimination of the word "cancer" in both diseases.

We need to rethink what we call cancer and remember our Hippocratic decree to "first, do no harm." Let’s continue to challenge our understanding of DCIS and evolve to a finer-tuned classification and treatment system for our patients. Now is the time to find a better path forward for all women with DCIS and to start thinking about the diagnosis as a window of opportunity for prevention. 

Anonymous wrote:

Anonymous wrote:I don’t have anyone to recommend, but I think it’s great that you are exploring it.

Estrogen dies not cause breast cancer, although it does feed it if you already have it. There are so many lifestyle choices we can make to lower our risk of breast cancer (not talking about HRT, more diet, exercise, alcohol etc.). People are unwilling to do these things, but shout cancer when anyone brings up HRT, which actually does have a lot of health benefits. Sure, you have to be diligent regarding lowering risk of and screening for breast cancer, but you should be doing that anyway.

To those saying no, read the book estrogen matters by Avron Bluming.

DCIS is breast cancer so I am not exactly following.