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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@windyshores

So I found an interesting study that says basically that Oncotype does not correlate with benefit or no benefit from radiation, so @callalloo you may be right in saying that this needs to be corrected at breastcancer.org.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8285794/
2015
excerpt:
"Interestingly, radiation therapy was protective in patients with intermediate or low Oncotype DX scores but not in patients with high Oncotype DX scores (Table ​(Table2).2). In intermediate-risk patients, an HR of 0.72 (p = 1.5E−5) suggested that patients who underwent radiation therapy had longer OS compared to patients who did not undergo radiation therapy. Similarly, an HR of 0.76 (p = 2.0E−4) in low-risk patients suggested prolonged OS after the use of radiotherapy (Table ​(Table2).2). A similar observation was made when using BCSS although the association in low-risk patients did not reach statistical significance (Additional file 2 – Table 1)."

I should have had radiation afterall! Maybe you too!

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In my case, the radiation offered was a kind of post-surgery "clean up" of the excision area, and was usually done within 6 weeks of the surgery. The radiologist explained it as ...as if one had broken a glass and picked up all of the visible pieces already (the surgery). Then the radiation was analogous to vacuuming up any unseen tiny pieces.

It's not a bad idea but it only gives some extra protection to the tiny area of the excision. It does not affect the possibility of radiation anywhere else including elsewhere in the same breast. My two issues were that radiation in the left breast would be nearer the heart andcalways carries the increased risk of lymphedema. The protocol was for radiation every other day, five times.

But even the radiologist described it as an option rather than a stong suggestion. The second oncologist I saw said it's an option but he wouldn't have recommended it at the time given the post-surgical biopsy.

One never knows if all the decisions, in retrospect, turned out to look perfect in the rear view mirror :-). The thing is that, with cancer, the decisions can come so fast while one is still reeling from having found oneself in Cancerland in the first place. And trying to avoid the horror stories heard about other cancer patients' too-late regrets. I suspect many of us share that whirlpool of having to act fast, while thinking takes time.

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@windyshores

Compression fractures can happen without any pain or symptoms. I have one I did not know about. My other fractures were/are extremely painful. Sometimes an x-ray for another reason will pick up a fracture.

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Thanks. I don't have pain beyond stiffness from four herniated disc's that, thankfully only infrequently, remind me that they are there. But apparently that's not proof of no problem

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@callalloo

Thanks. I don't have pain beyond stiffness from four herniated disc's that, thankfully only infrequently, remind me that they are there. But apparently that's not proof of no problem

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You only have osteopenia. I had osteoporosis for 14 years w/out fracture.

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@windyshores

You only have osteopenia. I had osteoporosis for 14 years w/out fracture.

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This occurred to me the other day... my DEXA fron 2021 shows very little difference when compared with one done in 2015. In fact my PCP twice compared them and the dates and said that they're nearly identical within a margin of error.

A friend suffered a broken mrck in 2015 and was hospitalized or in rehab for 2.5 years. When he was put in a halo contraption to hopefully enable bones pieces to reattach, I found the best 'bone formula' vitamin supplement that I could to keep him supplied with. I also started taking the stuff as it was on my kitchen counter.

I now ponder that the insignificant changes between the two DEXASCANs 6 years apart are attributable at least in part to the daily supplement. [The DEXA bone density decreased by hundredths of a percent in one case and increased by tenths of a percent in another.] At any rate, I'm continuing to take the stuff. An echocardiogram and calcium score test reassured my cardiologist and me that the calcium seems to not be building up in arteries as some people fear.

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@callalloo

This occurred to me the other day... my DEXA fron 2021 shows very little difference when compared with one done in 2015. In fact my PCP twice compared them and the dates and said that they're nearly identical within a margin of error.

A friend suffered a broken mrck in 2015 and was hospitalized or in rehab for 2.5 years. When he was put in a halo contraption to hopefully enable bones pieces to reattach, I found the best 'bone formula' vitamin supplement that I could to keep him supplied with. I also started taking the stuff as it was on my kitchen counter.

I now ponder that the insignificant changes between the two DEXASCANs 6 years apart are attributable at least in part to the daily supplement. [The DEXA bone density decreased by hundredths of a percent in one case and increased by tenths of a percent in another.] At any rate, I'm continuing to take the stuff. An echocardiogram and calcium score test reassured my cardiologist and me that the calcium seems to not be building up in arteries as some people fear.

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If strontium is in the supplement to a significant degree, your bone density on the DEXA will look better than it is. Strontium is heavier than calcium and throws the DEXA off.

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@windyshores

If strontium is in the supplement to a significant degree, your bone density on the DEXA will look better than it is. Strontium is heavier than calcium and throws the DEXA off.

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Thanks for the reminder. I checked and it doesn't include strontium. Some people are taking that. Do you think it's good to add regime, with the caveat thatmit might skew a future DEXA?

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I went through all these inquiries after lumpectomy. I was/am early stage ER+ PR+, 1.2 cm IDC, no nodes, Oncotype 8, but LVI. My margins were 2 mm except in one area where there was some evidence of atypical hyperplasia at 1 mm from the margin. I was very negative about hormone blockers from day one because of my osteopenia and only consented to low dose tamoxifen. My RO recommended no radiation. I called my breast surgeon who was skeptical and asked, what if you can't tolerate the tamoxifen? I researched the subject. The Tufts tool https://www.tuftsmedicalcenter.org/ibtr/ showed a good percentage ipsilateral risk reduction with radiation and I also found that radiation is considered more effective than hormone therapy in reducing risk of a new primary or recurrence. Given the LVI and small margin I requested whole breast hypo-fractionated radiation, which consisted of 16 sessions and no tumor bed boost. As it turns out, I could not tolerate tamoxifen and quit it. But I am finding anastrozole very tolerable. I take it in the morning and then walk the dogs and practice yoga, both physical actions perhaps lessening the pill's side effects. My point here is that we seem to be fighting the standard-of-care, but at what risk? Sure, I could reject radiation and hormone therapy because they may not lower mortality, but, as my RO said, I would perhaps confront another BC down the line. No thanks. I don't want another surgery or mastectomy when I am elderly. Also, I do not want to destroy my bones, so I changed my diet and keep up my exercise. After reading a number of books about BC, diet, and recurrence, I have become more open to NCCN standards alongside of alternative treatments. Our aim is the same: good health and no recurrence or metastasis.

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@vivi1

I went through all these inquiries after lumpectomy. I was/am early stage ER+ PR+, 1.2 cm IDC, no nodes, Oncotype 8, but LVI. My margins were 2 mm except in one area where there was some evidence of atypical hyperplasia at 1 mm from the margin. I was very negative about hormone blockers from day one because of my osteopenia and only consented to low dose tamoxifen. My RO recommended no radiation. I called my breast surgeon who was skeptical and asked, what if you can't tolerate the tamoxifen? I researched the subject. The Tufts tool https://www.tuftsmedicalcenter.org/ibtr/ showed a good percentage ipsilateral risk reduction with radiation and I also found that radiation is considered more effective than hormone therapy in reducing risk of a new primary or recurrence. Given the LVI and small margin I requested whole breast hypo-fractionated radiation, which consisted of 16 sessions and no tumor bed boost. As it turns out, I could not tolerate tamoxifen and quit it. But I am finding anastrozole very tolerable. I take it in the morning and then walk the dogs and practice yoga, both physical actions perhaps lessening the pill's side effects. My point here is that we seem to be fighting the standard-of-care, but at what risk? Sure, I could reject radiation and hormone therapy because they may not lower mortality, but, as my RO said, I would perhaps confront another BC down the line. No thanks. I don't want another surgery or mastectomy when I am elderly. Also, I do not want to destroy my bones, so I changed my diet and keep up my exercise. After reading a number of books about BC, diet, and recurrence, I have become more open to NCCN standards alongside of alternative treatments. Our aim is the same: good health and no recurrence or metastasis.

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My oncologist(s) followed NCCN too and I found the NCCN website very helpful. But. I think that people are being offered various different radiation protocols. In my case, the radiation was site-specific only and didn't include the whole breast. And would not have reduced any risk anywhere else in either breast. Your course was more aggressive and I suspect there are myriad variations in between. And of course each person's body and cancer is different from any others.

What alternative treatments are you using or contemplating?

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@windyshores

Yes but what prompted the scans? My oncologist does no testing of blood. I went in once with hip pain but it was arthritis. I am just not sure how any metastasis to bones would be caught for the large number of us in daily pain anyway!

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I was scheduled for a lumpectomy. The CAT scan was one of the tests required for the surgery which was immediately cancelled.

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@auntieoakley

This drug combination is designed to keep metastatic or advanced estrogen positive cancer in check. Typically surgery is not an option after cancer has spread to other parts of the body, unless it is being used to prevent specific suffering due to the size or location of a tumor.
Why is it that you want to drop the Ribociclib from your treatment? Are you having adverse side effects from this?
@windyshores have you asked your oncologist for a bone scan or a pet scan? I know that it wouldn't be appropriate all the time but if you are having additional pain, it seems warranted. Have you had any unusual fractures?

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Yes, I have adverse side effects. Are there other reasons to drop a drug?

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