Aromatase Inhibitors: Did you decide to go on them or not?

Posted by nanato6 @nanato6, Oct 12, 2018

Nanaloves: I’m about to start arimidex and just feel that the contraindications , bone issues etc. are overwhelming. I’m 70 years old, dodged a bullet I feel with zero stage DCIS but the follow up is pretty much no different then if it was more aggressive. I’ve just done 33 treatments of radiation and now they advise arimidex as a preventative. I’m not sure with the beginnings of arthritis and lower back. sensitivity already that I should take it. Anyone not take it and not have a recurrence within the 5 years.

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@cindylb

lluna57 - Sorry you're having the side effects too. This isn't scientific in any way but it seems if many breast cancers are hormone positive in some way then our hormones have been working overtime and by adding a pill that alters that yet again....side effects would be the result. I hope that someday research will begin on the hormone imbalance issues that may contribute to breast and ovarian cancers and all the other related maladies some women suffer. My whole life has been the 'poster child' of imbalanced hormones. I enjoy studying breast cancer, the drugs and their effects but there isn't enough information available to the public or patients on exactly how the AI's function. Also, I haven't gotten any detailed information from my doctors. I wonder what other functions those AI's perform to stop cancer and why they create the sometimes dramatic effects in many women.
I too had bones of steel at one point....ha ha. Now they are more like bones of tin perhaps, but only due to my natural hormone decline. The AI's hasten that demise in some way by removing estrogen and progesterone I guess. I do hear that the pain we experience from them goes away once you stop the drugs but I have also had my doctors say they'll just give you another pill to remedy the bone loss..........it's a sort of cascade of pills.
We all have to choose between the cancer and the side effects. I'm hopeful that the next generation of breast cancer patients will have more and better options.
I have my six month check up this Tuesday and I will try to get more information on the AI's and long term effect and perhaps more about how they work. I will share anything new I learn. If anyone else on here has more information, please share. I know I'd benefit from a clearer understanding of the meds and long term effects.
Hugs!!

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The aromatase inhibitors stop the production of estrogen. Estrogen helps support bone renewal. Pre-menopausal women are said to have an 'estrogen shield' protecting their bones to some extent. That is lost (though not 100%) with menopause and is one reason that many women take 'hormone replacement therapy' after menopause. Estrogen does a lot of other things as well. I'm not sanguine that it's other functions are getting due attention. Loss of bone density is so obvious that oncologists have to address it for patients on anti-estrogen therapy.

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@windyshores

I personally don't use these sites. Their results are very different from my genomic tests. I am 7 years out from diagnosis anyway!

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My response is simple… you don’t need to know what you don’t need to know. Personally, three weeks out from a lumpectomy, margins clear, staged 1bNX, I’m looking forward to my radiation “rehearsal” and then (I hope) an accelerated partial breast course of treatment. My surgical teams calls my pathology report “fantastic,” and for now, that’s all I need to know.

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@slfisher1976

My response is simple… you don’t need to know what you don’t need to know. Personally, three weeks out from a lumpectomy, margins clear, staged 1bNX, I’m looking forward to my radiation “rehearsal” and then (I hope) an accelerated partial breast course of treatment. My surgical teams calls my pathology report “fantastic,” and for now, that’s all I need to know.

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@slfisher1976 I didn't remember what that classification meant.

In stage 1A breast cancer, the tumor measures up to 2 centimeters, but there’s no lymph node involvement. With stage 1B breast cancer, the tumor is less than 2 centimeters, but there are small clusters of cancer cells in nearby lymph nodes.
and
Stage 1B: Cancer between 0.2 mm and 2 mm is found in the lymph nodes (the breast tumor can’t be detected or is smaller than 20 mm).

The NX means the lymph nodes cannot be evaluated.

Not sure what it means if the nodes cannot be evaluated but you are 1b!

No offense, but it seems a lot of oncologists are cheerful and reassuring.....

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@windyshores

@slfisher1976 I didn't remember what that classification meant.

In stage 1A breast cancer, the tumor measures up to 2 centimeters, but there’s no lymph node involvement. With stage 1B breast cancer, the tumor is less than 2 centimeters, but there are small clusters of cancer cells in nearby lymph nodes.
and
Stage 1B: Cancer between 0.2 mm and 2 mm is found in the lymph nodes (the breast tumor can’t be detected or is smaller than 20 mm).

The NX means the lymph nodes cannot be evaluated.

Not sure what it means if the nodes cannot be evaluated but you are 1b!

No offense, but it seems a lot of oncologists are cheerful and reassuring.....

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Actually, according to my surgeon, nurse navigator, radiation oncologist and medical oncologist, and pathologist, Stage 1b does NOT need lymph node involvement to be classified as 1b. In my case, the size of the tumor (6 mm) was enough for it to be considered 1b rather than 1a.

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@slfisher1976

Actually, according to my surgeon, nurse navigator, radiation oncologist and medical oncologist, and pathologist, Stage 1b does NOT need lymph node involvement to be classified as 1b. In my case, the size of the tumor (6 mm) was enough for it to be considered 1b rather than 1a.

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That was what I was saying, sorry to be unclear. I was saying that 1bNX seems like a contradiction, since they were saying 1b supposedly means something found in lymph nodes, and NX means the nodes cannot be evaluated- kind of a contradiction.

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@windyshores

@slfisher1976 I didn't remember what that classification meant.

In stage 1A breast cancer, the tumor measures up to 2 centimeters, but there’s no lymph node involvement. With stage 1B breast cancer, the tumor is less than 2 centimeters, but there are small clusters of cancer cells in nearby lymph nodes.
and
Stage 1B: Cancer between 0.2 mm and 2 mm is found in the lymph nodes (the breast tumor can’t be detected or is smaller than 20 mm).

The NX means the lymph nodes cannot be evaluated.

Not sure what it means if the nodes cannot be evaluated but you are 1b!

No offense, but it seems a lot of oncologists are cheerful and reassuring.....

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And no offense, but why ever shouldn’t they be cheerful and reassuring? Should they be gloomy and in utter despair as a general rule of practice?

The 2 pathologists who independently wrote my report (and of whom I have no knowledge as to their cheerfulness) BOTH classified my tumor as 1b. My surgical and medical team concurs. I had a negative lymph node biopsy and no lymph nodes removed. It was definitely 6 mm with clear margins. And that’s my story.

I’m here to share, not to be lectured to or scolded.

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@slfisher1976

And no offense, but why ever shouldn’t they be cheerful and reassuring? Should they be gloomy and in utter despair as a general rule of practice?

The 2 pathologists who independently wrote my report (and of whom I have no knowledge as to their cheerfulness) BOTH classified my tumor as 1b. My surgical and medical team concurs. I had a negative lymph node biopsy and no lymph nodes removed. It was definitely 6 mm with clear margins. And that’s my story.

I’m here to share, not to be lectured to or scolded.

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I think there is misunderstanding here. I was just asking about the contradiction between 1b and NX.

I have noticed a chirpy quality to my two oncologists. It is our choice whether to believe their affect or not. Not judging at all.

Sorry if I expressed myself in a way that made you feel that way. Not intended. I was just curious about the classification especially NX.

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Here's how Sloan Kettering and two other sites define Stage 1B. M.D. Anderson uses the same standard. As does my oncologist at Cleveland Clinic. The definition is the same across the industry.

Sloan-Kettering:
Stage I describes a very early stage of invasive cancer. At this point, tumor cells have spread to normal surrounding breast tissue but are still contained in a small area. Stage I is divided into two subcategories:

In stage IA, a tumor measures up to 20 millimeters (about the size of a grape), and there’s no cancer in the lymph nodes.

Stage IB can be described as either:
a small tumor in the breast that is less than 20 millimeters plus small clusters of cancer cells in the lymph nodes; or
no tumor in the breast plus small clusters of cancer cells in the lymph nodes.

https://www.mskcc.org/cancercare/types/breast/diagnosis/stages-breast

Cancer Center:
Stage 1A: The tumor is very small and has not spread to lymph nodes.

Stage 1B: Cancer between 0.2 mm and 2 mm is found in the lymph nodes (the breast tumor can't be detected or is smaller than 20 mm).
http://www.cancercenter.com

BreastCancer.org:
In general, stage IA describes invasive breast cancer in which: the tumor measures up to 2 centimeters (cm) and the cancer has not spread outside the breast; no lymph nodes are involved

In general, stage IB describes invasive breast cancer in which: there is no tumor in the breast; instead, small groups of cancer cells — larger than 0.2 millimeter (mm) but not larger than 2 mm — are found in the lymph nodes

or there is a tumor in the breast that is no larger than 2 cm, and there are small groups of cancer cells — larger than 0.2 mm but not larger than 2 mm — in the lymph nodes
http://www.breastcancer.org

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@callalloo

Here's how Sloan Kettering and two other sites define Stage 1B. M.D. Anderson uses the same standard. As does my oncologist at Cleveland Clinic. The definition is the same across the industry.

Sloan-Kettering:
Stage I describes a very early stage of invasive cancer. At this point, tumor cells have spread to normal surrounding breast tissue but are still contained in a small area. Stage I is divided into two subcategories:

In stage IA, a tumor measures up to 20 millimeters (about the size of a grape), and there’s no cancer in the lymph nodes.

Stage IB can be described as either:
a small tumor in the breast that is less than 20 millimeters plus small clusters of cancer cells in the lymph nodes; or
no tumor in the breast plus small clusters of cancer cells in the lymph nodes.

https://www.mskcc.org/cancercare/types/breast/diagnosis/stages-breast

Cancer Center:
Stage 1A: The tumor is very small and has not spread to lymph nodes.

Stage 1B: Cancer between 0.2 mm and 2 mm is found in the lymph nodes (the breast tumor can't be detected or is smaller than 20 mm).
http://www.cancercenter.com

BreastCancer.org:
In general, stage IA describes invasive breast cancer in which: the tumor measures up to 2 centimeters (cm) and the cancer has not spread outside the breast; no lymph nodes are involved

In general, stage IB describes invasive breast cancer in which: there is no tumor in the breast; instead, small groups of cancer cells — larger than 0.2 millimeter (mm) but not larger than 2 mm — are found in the lymph nodes

or there is a tumor in the breast that is no larger than 2 cm, and there are small groups of cancer cells — larger than 0.2 mm but not larger than 2 mm — in the lymph nodes
http://www.breastcancer.org

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But NX means "hard to interpret lymph nodes." Confusing.

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@windyshores

But NX means "hard to interpret lymph nodes." Confusing.

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I agree. It doesn't make sense. I had a small tumor (7mm including clean margins) and clean sentinel lymph node biopsy. Thus a Stage 1A. [And thank heavens it was caught during a routine, overdue mammo and ultra.]

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