1. < Breast Cancer

Genetic testing for breast cancer Revised guidelines

Posted by callalloo @callalloo, Jun 14, 2022

I had the OncotypeDX and learned a lot about the test and what can be inferred from it. I saw this article from and think people dealing with breast cancer might want to see the array of tests now available. For those with a first-ever tumor, please lobby for genetic testing...it can make a huge difference in your treatment options. One study of oncologists in Europe found that they are more likely to trust genetic test results than 'clinical history or observation.' And Oncotype occasionally gets tumor samples that were misdiagnosed as non-invasive while the tissue sample clearly showed invasive breast cancer. If your oncologist(s) opinion matches the later genetic test results, so much the better. The patient can be better reassured.

https://ascopost.com/issues/june-10-2022/asco-refines-guidance-on-using-biomarkers-for-adjuvant-endocrine-and-chemotherapy-in-early-stage-breast-cancer/

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

eku | @eku | Jun 15, 2022
In reply to @windyshores "@eku The Oncotype is used at the time of diagnosis, and gives the risk of recurrence,..." + (show)
@windyshores

@eku The Oncotype is used at the time of diagnosis, and gives the risk of recurrence, so I don't think it would be used for metastatic breast cancer.

I also had HER2+ then equivocal then negative. But close to the line for positive. As I wrote above, it seems tje ductal part of my cancer was positive and the lobular part was negative. I am going to read what you posted about "low" HER2.

ps here is text on who can use the Oncotype: Oncotype DX helps predict the chance of metastasis and the likelihood of benefit from chemotherapy for early breast cancers that are all of the following [14,32-34]:

Tumor size smaller than 5 cm
ER-positive (and will be treated with hormone therapy)
HER2-negative
Lymph node-negative or 1-3 positive lymph nodes

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Here's some more info on the "low" HER2.
The clinical trial is called: DESTINY-Breast04
https://ascopost.com/news/june-2022/fam-trastuzumab-deruxtecan-nxki-doubles-progression-free-survival-in-her2-low-metastatic-breast-cancer/

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1 reply
windyshores | @windyshores | Jun 15, 2022
In reply to @eku "Here's some more info on the "low" HER2. The clinical trial is called: DESTINY-Breast04 https://ascopost.com/news/june-2022/fam-trastuzumab-deruxtecan-nxki-doubles-progression-free-survival-in-her2-low-metastatic-breast-cancer/" + (show)

It seems that this study pertains to metastatic cancers.

Except for this sentence at the beginning:

The use of fam-trastuzumab deruxtecan-nxki doubled progression-free survival compared with the standard-of-care treatment plus conventional chemotherapy.

But then it goes on to discuss benefits with metastatic so I think that is where it is being used.

I have made it 7 years so far. I have always wondered if my HER2 should have been treated! They have not yet determined the threshold for "low" but I am pretty sure I would be in that group with my mixed results and final pathology that was almost on the line.

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callalloo | @callalloo | Jun 15, 2022
In reply to @windyshores "@eku The Oncotype is used at the time of diagnosis, and gives the risk of recurrence,..." + (show)
@windyshores

@eku The Oncotype is used at the time of diagnosis, and gives the risk of recurrence, so I don't think it would be used for metastatic breast cancer.

I also had HER2+ then equivocal then negative. But close to the line for positive. As I wrote above, it seems tje ductal part of my cancer was positive and the lobular part was negative. I am going to read what you posted about "low" HER2.

ps here is text on who can use the Oncotype: Oncotype DX helps predict the chance of metastasis and the likelihood of benefit from chemotherapy for early breast cancers that are all of the following [14,32-34]:

Tumor size smaller than 5 cm
ER-positive (and will be treated with hormone therapy)
HER2-negative
Lymph node-negative or 1-3 positive lymph nodes

Jump to this post

I might tweak that comment. There are sometimes diagnoses done before surgery but the OncotypeDX is done with tumor tissue removed at the time of surgery. So it's usually a post-surgical test and is done specifically to offer a risk/reward evaluation of chemo for the client whose tissue was submitted if the person has not has chemo or radiation.

BUT, it also provides a predicted risk of recurrence, local or regional, within 9 years if that client does not do chemo but did take anti-hormone therapy. Since anti-hormone therapy is currently considered to reduce risk of recurrence by 40-45%, one can calculate the risk of recurrence is one does NOT take anti-hormone therapy based on that number.

Radiation is not addressed by the OncotypeDX except that the test statistical model is based on not having had chemo or radiation within 2 years previously, for any cancer in the body.

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callalloo | @callalloo | Jun 15, 2022
In reply to @mdr3 "I so appreciate this information. I come from a wasteland when it comes to "awareness" (why..." + (show)
@mdr3

I so appreciate this information. I come from a wasteland when it comes to "awareness" (why I check into a cancer center in the city every year). I have been following the latest on the Association, especially since their last conference. As a Stage IIIc survivor this is important to me. Thank you!

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Thanks! I've been reading about breast cancer since a Bad News Biopsy I'm Sept., 2021. But had not come upon ASCO before yet so good to now they're of value. There's so much dated info on the internet so I'm trying to just pay attention to the stuff that's actually relevant with today's choices.

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callalloo | @callalloo | Jun 15, 2022
In reply to @windyshores "I had the Oncotype DX in early 2015, with a score of 8, and risk of..." + (show)
@windyshores

I had the Oncotype DX in early 2015, with a score of 8, and risk of recurrence at 6%, despite grade 2-3 (depending on lab), LVI, and ki67% of 20, just over the line for "high." The Oncotype includes ki67%, along with other proliferative factors. My ER was 95% and PR 80%.

In early 2020, after 5 years on letrozole, I sought out the Breast Cancer Index myself. My doctor had never heard of it. I am glad to see it is now in the guidelines. The BCI indicated no benefit from extended hormonal therapy, despite my original high score for ER. It also gave a risk, as I remember, of 5.7%. At that time, the BCI termed this "high risk" but they have since changed that method of classification.

I went a little further at the 5 year point of treatment and also did the Prosigna Assay (formerly PAM 50). That test had me with a higher risk of recurrence. I forget and don't have it with me but more like 9%? That made sense to me because without continued effective hormonal treatment, I thought risk might increase.

For both the BCI and Prosigna, I contacted the testing company myself and then gave the paperwork to my doctor. It seems that since they are now in the guidelines, patients might get them directly from the doctor.

I had a lot of discordance between seemingly very high risk pathology results and low Oncotype score. I was also originally told I was HER2+ after biopsy and had bought a wig for chemo. Then after surgery it was equivocal, then negative. I have mixed ductal and lobular and the ductal part is HER2+ but the overall score was, eventually, negative. I had a 4th opinion on this and that doc retested using more cells so I could feel reassured. From that, I would assume that my cancer was more lobular than ductal.

A few other things about my testing that I speculate on. Lobular always has a 3 for tubular so my grade 3 might be lower. My biopsy was healing and healing cells could account for highish ki67%. I still wonder if the LVI was also created by the biopsy though my doc says no. I put effort into pursuing answers because my genomic test was so different from the pathology. Basically, Oncotype Dx saved me from chemo! Seven years out and grateful so far.

I did get 4 opinions and that meant 4 different labs. They did vary on grade, between 2 and 3.

@callalloo my docs all said ki67% was unreliable and varied from lab to lab. I dealt with 4 labs and only one did ki67%. But that was 2015 so maybe it has been refined. Interesting to see it in the guidelines.

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My Cleveland Clinic onco is underwhelmed by the Ki-67 data and doesn't test for it. But if Oncotype does actually include it, then I guess I was tasted for it. It's not anywhere in the report that patients get that I can find so I don't know what my number is or was.

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1 reply
callalloo | @callalloo | Jun 15, 2022
In reply to @eku "This may be a very silly question but, does Oncotype testing apply to metastatic breast cancer..." + (show)
@eku

This may be a very silly question but, does Oncotype testing apply to metastatic breast cancer patients? I mean, does it only tell you it's likelihood to recur?

I've had a drama on being HER2-negative and then another test showing HER2-positive (albeit very slightly). My treatment is now on HER2-negative. Also, it seems like there's some recent change of understanding on HER2 labeling (HER2 low) which may? affect the treatments for some people.
https://twitter.com/IlanaSchlam/status/1534149465841582084/photo/1

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The OncotypeDX is used for early estrogen positive breast cancers. But I don't know if it's limited to non-metastatic cancers. And the parent company has other gene tests for other breast cancer questions. The Oncotype customer service is very good and could direct you further. They likely know what other companies are doing as well. It bothers me that not all oncologists are up to speed on what's available. In my opinion, @windyshores and others are amazingly resourceful at finding more help but it's a symptom of a fractured medical system that we have to...the good news being that we can share what we find with each other at least.

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windyshores | @windyshores | Jun 15, 2022
In reply to @callalloo "My Cleveland Clinic onco is underwhelmed by the Ki-67 data and doesn't test for it. But..." + (show)
@callalloo

My Cleveland Clinic onco is underwhelmed by the Ki-67 data and doesn't test for it. But if Oncotype does actually include it, then I guess I was tasted for it. It's not anywhere in the report that patients get that I can find so I don't know what my number is or was.

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ki67% is one of several (7?) proliferative factors in the Oncotype, so not reported by itself, I was told.

Since my ki67% was highish, and my Oncotype was low, I wondered if my other proliferative factors were low!

ps my original Oncotype was after biopsy and I convinced one doc to redo it on one of my post-surgical blocks, because my tumor was so variegated. I even chose the block. (This was partly because biopsy specimens were HER2+ and post surgery specimens were equivocal then negative, so I didn't trust any results from the biopsy.)

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callalloo | @callalloo | Jun 17, 2022
In reply to @windyshores "I had double mastectomy, no radiation, and did 5 years letrozole (Femara, brand name). My risk..." + (show)
@windyshores

I had double mastectomy, no radiation, and did 5 years letrozole (Femara, brand name). My risk of recurrence was 6% with tamoxifen on the Oncotype, and 12% without. Odds slightly better with AI's. I didn't have many problems on Femara.

My only message to you is that there was a discrepancy between my pathology and the Oncotype. The pathology results were much worse. So it was reassuring. I would not have done chemo anyway.

I also had osteoporosis when I went on AI's. I lost density the first year and then it leveled off. I am now on Tymlos (started at low dose and moved up).

I actually wanted to avoid radiation the most!

You may be fine with your plan. If the pathology is scary then you can always do an Oncotype on the chance that it is better!

You can access these tests long term because the labs keep your specimens, I got to know all the lab staff at 4 hospitals and I moved the specimens around!

We need to keep going in pursuit of answers and plans until we feel it is right to stop. Sounds like you are there! Good luck!

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I'm not sure how the 'pathology results were much worse' than the Oncotype. They are unrelated. Would it be fair to interpret your statement that the evaluation based on the pathologist's report suggested a cancer with a much higher recurrence risk than what Oncotype's genetic analysis of the tumor tissue reported back? That is, there was a difference of risk opinion between the clinical pathology profile of the tumor cells versus what the genetic testing suggested? I had a low OncotypeDX risk score. The Oncotype scientist told me that I had a really good result, no rogue alleles, no bad genes, no mutations. But I pointed out the irony is that I nonetheless had a 6mm tumor...

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callalloo | @callalloo | Jun 17, 2022
In reply to @mdr3 "I so appreciate this information. I come from a wasteland when it comes to "awareness" (why..." + (show)
@mdr3

I so appreciate this information. I come from a wasteland when it comes to "awareness" (why I check into a cancer center in the city every year). I have been following the latest on the Association, especially since their last conference. As a Stage IIIc survivor this is important to me. Thank you!

Jump to this post

Just curious, have you been with the cancer center since the cancer was first dealt with? And do find they give excellent care and are really helpful? I've just the TV commercials for the corporate ones. My cancer seemed so plain vanilla that I went to a local branch of Cleveland Clinic. When I had the wide-needle biopsy, I started wondering if I'd have to go to M.D. Anderson or Sloan Kettering but was spared that though I read everything on their websites about their treatment for stage 1A DCIS and Cleveland Clinic's recommendations were the same.

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callalloo | @callalloo | Jun 17, 2022
In reply to @slfisher1976 "First, I’m mightily impressed by your fierce self-advocacy and persistence. Second, your series of tests with..." + (show)
@slfisher1976

First, I’m mightily impressed by your fierce self-advocacy and persistence. Second, your series of tests with often conflicting and/or equivocal results tell me (an overly anxious research nerd) that I made the right decision for me when I recently decided to forego the Oncotype.

For me, (and again only for me and women like me) such testing would have thrown up a wide, impenetrable barrier toward clear-cut, positive healing going forward. As someone with diagnosed osteoporosis, I’d already rejected AIs, and as a 71-year-old who works, travels the world and is entirely responsible for herself, I double-downed on no AIs and even no tamoxifen.

So it was radiation for me. I knew I wanted SOMETHING to bolster my lumpectomy, and I was told by my surgeon I did not require chemo due to the size and staging of my rice-sized tumor. And finally, something this gentle, pragmatic Hindu woman said resonated with me… “you don’t want to know what you don’t need to know.”

This is just me… lumpectomy last Friday, waiting on pathology results. Hoping/Planning for accelerated, partial breast radiation.

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The OncotypeDX was very reassuring in my case. I got a low risk score of essentially 5% risk of loco-regional recurrence within 9 years if I didn't have chemo or AIs. @windyshores had a very different path with a more complicated cancer. IF my oncologist thought I had a high risk, based on his 30+ years as a breast cancer oncologist, I'd have had to factor that in but he was happy with, but unsurprised by, the low score as it matched the pathologists finding of the post-surgery biopsy.

I'm with @windyshores in thinking that the OncotypeDX would be worth having done.

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