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.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@windyshores

Here is the excerpted text from breastcancer.org:

For invasive:
"So, the Oncotype DX Breast Recurrence Score Test is both a prognostic test, since it provides more information about how likely (or unlikely) the breast cancer is to come back, and a predictive test, since it predicts the likelihood of benefit from chemotherapy or radiation therapy treatment. Studies have shown that Oncotype DX Breast Recurrence Score Test is useful for both purposes."
For DCIS:
(After the Oncotype) "Radiation therapy may be recommended for some women. Doctors aren’t always sure which women will benefit from radiation therapy."

I was surprised. Back in 2014 Radiation was not mentioned in the context of the Oncotype, only pathology. @callalloo are you saying this is mistaken?

Jump to this post

Exactly! This is totally wrong.. Breastcancer.org is still saying, which is completely flat out incorrect, that the OncotypeDX can yield ANY info upon which to help base a radiation decision.

Oncotype doesn't have a test that addresses radiatiion. Yet, according to the senior science guy I talked to, doctors and patients are seeing this misstatement of fact and thinking it's true. The OncotypeDX is strictly designed to yield a 'likely benefit versus risk' anslysis of chemo for the person whose 21 genes the test looked at.

Virtually zero inferences can be drawn about radiation benefits for that specific person from the OncotypeDX. [There is also an Oncotype Breast Cancer Assay, which doesn't address chemo or radiation either.]

I've written to Breastcancer.org several times to correct their misunderstanding to no avail. The problem with mistruths on the internet is that they have a very long shelf life. It's impossible to get them off of the zillion other websites that just cut-and-paste stuff to their own.

REPLY
@callalloo

Exactly! This is totally wrong.. Breastcancer.org is still saying, which is completely flat out incorrect, that the OncotypeDX can yield ANY info upon which to help base a radiation decision.

Oncotype doesn't have a test that addresses radiatiion. Yet, according to the senior science guy I talked to, doctors and patients are seeing this misstatement of fact and thinking it's true. The OncotypeDX is strictly designed to yield a 'likely benefit versus risk' anslysis of chemo for the person whose 21 genes the test looked at.

Virtually zero inferences can be drawn about radiation benefits for that specific person from the OncotypeDX. [There is also an Oncotype Breast Cancer Assay, which doesn't address chemo or radiation either.]

I've written to Breastcancer.org several times to correct their misunderstanding to no avail. The problem with mistruths on the internet is that they have a very long shelf life. It's impossible to get them off of the zillion other websites that just cut-and-paste stuff to their own.

Jump to this post

I am trying to understand. Oncotype does two things: assesses risk of distant recurrence, and benefit of chemo. So if risk is low wouldn't that help a patient decide not to have radiation>

I think it is different for mastectomy patients, many of whom do not have radiation. This was my biggest decision. I was told that one in five radiologists would suggest radiation for me, and my tumor board said no.. My low Oncotype (and assumed low recurrence risk at that time) definitely affected my decision not to have radiation.

REPLY
@windyshores

I have relied on breastcancer.org for years. Can you share their mistaken description of the Oncotype Dx?

I am now curious. Does not having radiation after a lumpectomy change the odds of recurrence as reported by Genomic Health? What other variables are left out of the picture? For example, I had lymphovascular invasion, which is not considered, nor is type of breast cancer (ductal. lobular mixed etc. I had to be a little more skeptical of the low score I got due to grade 3 and lymphovascular invasion. If someone who theoretically needed radiation after lumpectomy., declines that treatment, it seems to me that a healthy skepticism about the low score might also be warranted. I don't really know.

Jump to this post

OncotyoeDX looks at just two things, (1) the recurrence if one takes adjuvant anti-hormone therapy and (2) if chemo would likely have a benefit in excess of its risks.

Obviously anything else that one might do to increase one's chances of remaining risk-free are benefits. E.g,, change in health or immune system as a result of change in diet, exercise, or stress would in theory further increase the likelihood of remaining cancer free, one hopes. But those would be exogenous variables outside of the Oncoyype focus. So, yes, people can improve their odds further but that's not the focus of the test.

They are in the process of developing other breast cancer tests, one that they hope can 'predict which Stage 0 cancers are or were likely to progress to further stages. For what it's worth, they consider Stage 0 a cancer and not, as some ponder, a kind of pre-cancer. They've seen tests on Stage 0 come back with a high risk of recurrence that doctors might have assumed would be low and might under-treat as a consequence. But none of this has all of the answers, key among them how I got the Rogue Element in the first place, as my genetics would suggest that I'd dodge that bullet. The only safe conclusion is that a low risk score is less scary than a very high one, alas.

REPLY
@windyshores

I am trying to understand. Oncotype does two things: assesses risk of distant recurrence, and benefit of chemo. So if risk is low wouldn't that help a patient decide not to have radiation>

I think it is different for mastectomy patients, many of whom do not have radiation. This was my biggest decision. I was told that one in five radiologists would suggest radiation for me, and my tumor board said no.. My low Oncotype (and assumed low recurrence risk at that time) definitely affected my decision not to have radiation.

Jump to this post

I can't speak to how people would likely evaluate the OncotypeDX score but it helped me skip "clean-up" radiation because it was too small a risk reduction versus possible side effects. Someone else might say that she wants every conceivable weapon available tossed at the recurrence risk, even just in that one tiny area. My breast surgeon, on the basis of pre- and post-surgical biopsies assumed that radiation wouldn't even be recommended. And the radiologist did offer it as an option, but not an insistent recommendation.

REPLY
@callalloo

I can't speak to how people would likely evaluate the OncotypeDX score but it helped me skip "clean-up" radiation because it was too small a risk reduction versus possible side effects. Someone else might say that she wants every conceivable weapon available tossed at the recurrence risk, even just in that one tiny area. My breast surgeon, on the basis of pre- and post-surgical biopsies assumed that radiation wouldn't even be recommended. And the radiologist did offer it as an option, but not an insistent recommendation.

Jump to this post

So your Oncotype score helped you decide against radiation. I think that is all that breastcancer.org is saying.

REPLY
@windyshores

So your Oncotype score helped you decide against radiation. I think that is all that breastcancer.org is saying.

Jump to this post

I'm just taking breastcancer.org's statement as written and pointing out that it is incorrect.

The OncotypeDX does not, in fact,
"predict(s) the likelihood of benefit from...radiation' therapy treatment" as stated in the excerpt you cited below. It does not make any radiation predictions at all.

"So, the Oncotype DX Breast Recurrence Score Test is both a prognostic test, since it provides more information about how likely (or unlikely) the breast cancer is to come back, and a predictive test, since it predicts the likelihood of benefit from chemotherapy or radiation therapy treatment. Studies have shown that Oncotype DX Breast Recurrence Score Test is useful for both purposes."

REPLY
@windyshores

Thanks. I have several spinal fractures. But I have osteoporosis which also muddies the picture. I am 7 years out from breast cancer diagnosis. I am going to ask my oncologist about all this. They do not do blood tests.

Jump to this post

I would think a PET/CT is in order to make sure there is no unusual cells in these fractures if that hasn’t already been done. Even with osteoporosis it seems like compression spinal fractures should be investigated further.

REPLY

Does a compression fracture always cause pain? That is, could one have compression, or othet, fractures in the vertebrae without having any symptoms?

REPLY
@callalloo

Does a compression fracture always cause pain? That is, could one have compression, or othet, fractures in the vertebrae without having any symptoms?

Jump to this post

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.

REPLY
@callalloo

I'm just taking breastcancer.org's statement as written and pointing out that it is incorrect.

The OncotypeDX does not, in fact,
"predict(s) the likelihood of benefit from...radiation' therapy treatment" as stated in the excerpt you cited below. It does not make any radiation predictions at all.

"So, the Oncotype DX Breast Recurrence Score Test is both a prognostic test, since it provides more information about how likely (or unlikely) the breast cancer is to come back, and a predictive test, since it predicts the likelihood of benefit from chemotherapy or radiation therapy treatment. Studies have shown that Oncotype DX Breast Recurrence Score Test is useful for both purposes."

Jump to this post

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!

REPLY
Please sign in or register to post a reply.