MikaMika, I take Oncotype results with a grain of salt. Well, a pound of salt, actually. Do a search on this site with my name and "Oncotype". I was responding to specific comments in several posts. Because an Oncotype score had been referenced, I used an Oncotype score as an example. Nothing more.

My very simple post on one very specific point has been taken to imply all sorts of things that I was in no way saying, implying, nor believe. Counter arguments have been made against points I never made, and I in fact agree with the counter arguments. It's become exhausting in this thread to constantly have to explain what I was not saying. So I've deleted my post. I'd decided a couple of days ago that I would be wise to stop posting in this thread. I should have stuck to my guns on that one.

MinusTwo, I get what you're saying. Having a lifetime of problems is a very good reason, IMO, to have BMX. I think there are many women who do come to this board who haven't experienced that, yet end up opting for the whole go-round of surgeries.

My point is not that it is a bad idea for them to do so (although I think it is, for some reasons, for many of them.) My point is that we have conflicting opinions about what the costs and benefits of various treatments are, and what makes it "worth it" for some and not for others. It is interesting and confusing, and something that would be easier to discuss out loud, rather than in this limited format.

Beesie, Beesie, Beesie! Don't tire yourself out on this thread....there will always be another thread that will command your attention! And it will also demand that readers follow your attention!

MountainMia, I totally see what you're saying.

The fact that evidence says mastectomy doesn't prevent metastatic recurrence seems to always get lost in the mx vs. lumpectomy+rads discussions; why should we trust the surgery any more than the systemic treatments to keep us alive? The evidence tells us we shouldn't. But we tell women to go with their gut on this..but on chemo decisions we're more likely to support what the MO/treatment guidelines recommend. (by 'we' I mean generic consensus on the msg board...)

(I understand the *other* reasons a pt might choose a mx ... but when comparing to chemo decisions the underlying purpose of the treatment is the same: to preserve life so on that basis the recommendations should be similarly weighted).

It's an interesting distinction.

Thanks to all of you for your thoughtful comments. Again, I posed the questions in a "devil's advocate" manner, and it's been very interesting to read through responses. I don't think I have a more solid opinion on a "right" answer! But it's a pretty complicated question, and each person's own circumstances mean there will never be a single answer, even for the individual.

The recent discussions highlight one of the things I am finding the hardest to wrap my head around, as someone who is just high-risk. At first I could not grasp how mastectomy didn't clearly improve outcomes for women with, say, stage I cancer. On the surface, this made NO SENSE to me. Now I have a better understanding that, by the time one gets a stage 1 diagnosis, in many cases, cells may have circulated and intrinsic aspects of the tumour govern how effective systemic therapy will ultimately be.

In some way it feels like mastectomy actually makes the most sense for someone at very high risk but who (hopefully) does not have invasive cancer yet (e.g. DCIS). This is how I interpret the standard of care re: BRCA 1/2 carriers. It's obviously incredibly hard to figure out who else is in the same boat, in the absence of such a clear genetic risk factor. But a lot of advice feels like it goes from "it's too early / overkill to do something drastic" then ... if anything is found, "it's too late, there's no point, we can't prove a survival advantage". (Of course, this also points out what a blunt tool mastectomy is as a treatment.)

Interesting discussions. Back to original post, bottom line, I think people should hear the data on risk recurrence for early stage cancers, understanding it may be 5 years old already and that it is changing. In my case, the data that 20 - 30% of people with early stage BC will go on to metastasize was never, ever said to me when I was dxed with DCIS, no lymph node,BC ER+ PR+ HER2- , in 2007 at age 54. (Showed up from in tiny calcifications. We know that significant % of women who die of other causes in their 80s have calcifications, and it was 1 radiologist who said we must biopsy this one, the one w a star shaped pattern in which biopsy found the DCIS.) I understood from the charts that following lumpectomy + radiation that my chance of being cancer free 5 years out was nearly 99 % . I had no risk factors, no family history, except that I weighed 40 lbs more than I did at 25, but which no one mentioned at the time as a risk factor. Five years later, I self-identified a lump at a different spot in the same breast, this one negative for ER, PR, but HER2+, Stage 2A, no lymph node involvement, with underlying DCIS in tumor tissue. Treated then with chemo, TCH, mastectomy. No hormone prophylaxis, as the cancer was hormone negative. Risk of being disease free 5 years out was now more like 85%, according to the data.

And yet, here I am, it's 2021, my bones all over my body filled with MBC dxed in 2018, again found to be ER+PR+, HER2-. My doc says it is possible the estrogen fueled cancer was already hiding in blood, marrow, years ago so that local steps didn't stop it, that we don't know what turns on those cancer cells to activate wherever they are hiding, and why some women go on to metastasize and most women don't. Should I have had chemo in 2007 for DCIS? No one would recommend that!!! And I had chemo in 2012, but that didnt stop those suckers from appearing 5/6 years later.

To me, the 30% risk of recurrence/metastases is important information for every woman to know, and it seems hidden from people w early stage cancers, because docs talk in 5 year, 10 year increments of PFS, where the numbers who go on to recurrence are small. But at the same time it wouldn't have changed my treatment decisions at the time. I wasn't put on tamoxifen after 1st bout of dcis because of hx of blood clots, so onc thought risk 50/50, cancer recurrence v blood clot. Said we might try an AI later after we see how they are doing, as one was newly on the market. Then we forgot about it in the face of good mammos, busy life. Would it have just petrified me and made me insist on more full body screening beyond the mammograms in my remaining breast had I known risk of recurrence was so high? I do wonder why MRIs and PETs aren't done periodically on someone with 2 bouts of BC, e.g. every 3 years, or even why doc stopped checking my CA27-29 after 3 years out from last cancer, which marker had never been elevated during bout 2 in any case. Might have seen metastases 1 - 2 years earlier? But I learned/was told regular PET/MRI in someone disease free for years doesn't change OS so not standard of care for someone with treated early stage BC. But really, might metastases have been found while still limited in number, and then treated aggressively? Maybe. The only known risk factors for recurrence after my 2012 bout were the fact of the 2 cancers, and the nature of the 2nd tumor, which was grade 3. Oh, also I'm overweight and I drink wine.

So much is unknown about BC and what we do know is changing all the time. We as individuals cannot prevent it beyond taking simple steps of weight control, exercise, healthy diet, no smoking, very limited or no alcohol, and regular medical care with latest data to guide it. Fundamentally, I feel we are dealing with the fact that recurrence is not in our hands, it is still in the control of the disease. It is just bad luck to be a part of the 30 %. And that is infuriating, especially for those of us who see ourselves as being in charge of our lives.

I am late to this discussion, but would like to add my story to this. I was told that I was cured after 5 years. There was never any discussion of recurrence from either my GP nor my MO. In fact my MO told me "I am dumping your chart because you're too healthy" even though I had complained about pain in my arm & back.

It would be another year before I was sent to the surgeon because of another problem & as an aside he asked if I was having any pain anywhere. I told him about my arm, back & by that time pain in my sacrum that he ordered a bone scan, the next day all hell broke loose with 3 Dr's calling me with the results.

At no point was I told that breast cancer could come back in my bones. I kick myself for not reading more about recurrence but I figured my Dr's would tell me anything I needed to know.

Oy, I should know better but I'm wading in again.

If we are talking about what doctors should telling breast cancer patients about their future risk, there are actually three separate categories of risk that should be discussed, and while one or maybe two might be, all three rarely are.

1) Metastatic cancer risk, which is what this thread has been focused on.

2) Local recurrence risk, i.e, a recurrence in the breast (after a lumpectomy) or breast area (yes, local recurrences can happen even after a MX, something patients aren't always told).

3) The risk of a new primary breast cancer. Too many people seem to think that after a breast cancer diagnosis, we are immune from getting another. The opposite is true. After a diagnosis of either DCIS or invasive cancer, our risk to develop a new primary breast cancer, either in the same breast or the contralateral breast, is significantly higher than the risk level faced by someone not previously diagnosed. This second diagnosis is completely unrelated to the first, and the cancer itself could be quite different - sometimes less aggressive/advanced but sometimes more aggressive/advanced. Timing could be anything from a couple of years after the first diagnosis to 20+ years later. Breast cancer risk increases as we age and for all women is highest in our 60s and 70s; for those previously diagnosed, our risk during these years is even higher. Women are usually shocked when they get a second diagnosis so many years after their first diagnosis, but they shouldn't be.

MountainMia, while I understand and agree with many of your thoughts about a BMX for those who have a small low risk DCIS, the risk of a second primary, particularly for someone yet to enter their highest risk years, is one to add into the column favouring a BMX - a new primary can develop after a BMX but the risk is extremely low compared to the risk for those who retain one or both breasts. I've been on this site long enough that I know of several people who had DCIS and then years later developed a second primary which was invasive and aggressive and which eventually developed into mets. (And before anyone says "but what about", let me say that I think there are many items in both columns, for BMX and against BMX - which is why a BMX for any small early stage cancer is as much a personal decision as a medical one.)

Moominmamma, your second diagnosis would have been either #2 or #3. Since the cancer was in a different part of your breast, and was HER2+ vs. your DCIS being HER2-, I wonder if it's #3. That would mean that your DCIS was in fact successfully treated, but you had the crappy luck to develop a second more aggressive cancer. Did your doctors ever discuss whether they thought your second diagnosis was a new primary rather than a recurrence?

Thanks to all for the very kind comments. Some days I hit overload.

Hi all

Just to add my bit to this thread

We should be told that we are never cured remission would be a better word

We should never be discharged from our onc

It's just too easy to forget ( me included) because life goes on and we cannot worry all the time

I don't know about percentages but if it's you it's 100%

Now I enroll in stage4 Could it have been prev. who knows?

Best to all

runor, thanks.

The one thing that I would add to my previous post - and maybe it ties to my frustration with the subject line of this thread - is that for most Stage I patients who have not had a BMX, and maybe for some Stage II patients too, the risk of a new primary breast cancer is actually higher than their risk of mets. How many people know that?

Obviously the risk of mets is a much more serious concern and a more immediate concern when we are first diagnosed and for the next 5-10 years. At some point though the risk of mets starts to decline; how long that takes depends on whether the diagnosis was triple negative, HER2+, or ER+/HER2-. And of course the risk of mets never fully disappears. But I think we all reach a point where we start to breathe a bit easier, thinking that most of our risk is behind us. Yet for those diagnosed in their 40s and 50s (or younger), the risk of a new primary has continued to increase as they've been getting older. So 15 years out from diagnosis, the risk of mets might only be 2% but the risk of a new primary might be 20%.

I hate seeing posts from people who develop mets and didn't realize that they could - those told by their doctors that they were "cured" or those who think that because they had a BMX they can't develop mets, or those who think that because they were node negative they can't develop mets.... There are lots of reasons for this misunderstanding and these are things that no patient should misunderstand (recognizing, to the earlier discussion, that some patients just don't want to know and tune out what they are being told).

But I also hate seeing posts from people who develop a new primary and don't understand how that could happen. Posts that say "I'm 17 years out and I really thought I had beaten this thing, but now it's back in the other breast." I've written dozens of posts that try to gently explain that they probably have successfully beaten the original diagnosis, but unfortunately they've developed a new breast cancer, and in fact they've been higher risk all along because of having been diagnosed previously. And this too is something that no patient should not know and yet is something that very few patients seem to know.

Unfortunately there is no lack of lack of understanding.

MountainMia, not to scare you, but based on my reading, I would guess that your risk of a second primary might be higher than you estimate. The average 58 year old has about a 9% to 10% remaining lifetime risk of breast cancer. Breast cancer patients appear to have between a 60% to 100% increase in breast cancer risk (100% increase equating to double the risk) vs. the general population, and it appears that those with a TN first primary breast cancer have a higher risk than that.

Second Primary Breast Cancer Occurrence According to Hormone Receptor Status https://www.ncbi.nlm.nih.gov/pmc/articles/PMC27209...

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Estrogen receptor, progesterone receptor, and HER2-neu expression in first primary breast cancers and risk of second primary contralateral breast cancer https://www.ncbi.nlm.nih.gov/pmc/articles/PMC41444...

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Hormone receptor status of a first primary breast cancer predicts contralateral breast cancer risk in the WECARE study population https://breast-cancer-research.biomedcentral.com/a...

Beesie--all I can say is WOW. Just WOW! This is information that is worthy of its own thread with a well worded title. Women on this site need to understand this information!

I am one who experienced the reality of a second breast tumor: a Phyllodes Tumor in 1996 and IDC in 2018. The Phyllodes never threatened my life (just lost half a breast), but I never knew that I was at such heightened risk until I was having the biopsy in 2018. While I was on the table with the radiologist taking samples, she told me my dense breast tissue put me at a 4-6 times greater risk of developing breast cancer and the Phyllodes Tumor only increased the risk of having developed a new cancer. I wish I'd met her at a party a few years before rather than learning this while having a biopsy for what turned out to be cancer. I would not have been putting so much faith in 3D mammograms and would have insisted on ultrasounds along with my mammograms, at the very least--along with MRI's at reasonable intervals.

This is truly the kind of information women who participate in this site need to know.

buttonsmachine, that's a good question, and I think the answer is , "it depends".

While higher Oncotype scores confer a higher risk, this risk is of course reduced by treatment. Based on this chart, it appears that post-chemo/hormone therapy metastatic risk (the solid blue line) comes in at about 14% for an Oncotype 48 score (I'm using a "48" since it's the highest score on this chart.)

Then we have to consider that Oncotype scores reflect a 9 year risk, but metastatic risk for ER+/HER2- patients runs out for 20 years. Based on this chart I posted previously, at 9 years there remains outstanding a bit more than 20% of the metastatic total risk. This means that someone with a 48 Oncotype score would have a lifetime metastatic risk of around 18% (14% being 78% of 18%).

Next complication, patient age and pathology. I post on BCO often about the Oncotype RSPC model (Recurrence Score Pathology Clinical) that takes the patient's Oncotype score and the average recurrence risk associated with that score, and adjusts the risk based on patient age, tumor size and tumor grade. This means that a very young patient with a 48 score will have a risk that is higher than the average Oncotype risk of 14%. A grade 3 tumor and a larger tumor would increase risk further. So this could turn an average lifetime risk of 18%, based on an Oncotype 48 score, into... I don't know. 25? 30? (Note that this is a discussion of "Stage I" and "high Oncotype score"; age doesn't factor into staging but tumor size does, and for the newer Pathological Prognostic Staging, tumor grade does as well. So while someone young with a high Oncotype score might be Stage I, we're unlikely to see many people in Stage I who have large, grade 3 tumors.)

As for new primary risk, what my MO told me was that my risk was double that of the average woman of the same age who'd never been diagnosed before. One of the studies I linked in my post to MountainMia also found that for those who've had ER+/HER2- cancers, risk is double. If we take the average 40 year old, her remaining lifetime risk (she no longer has to worry about the risk she faced in her 20s and 30s) is 11.8%. Double that, and you get a 23.6% lifetime new primary breast cancer risk for someone aged 40 who was previously diagnosed with an ER+/HER2- breast cancer.

Lots of playing with numbers and reliance on individual studies, so this calculation has to be taken as an estimate only. But it's probably in the ballpark. And what it says is that even for someone with a 48 Oncotype score, if she follows treatment protocol, then depending on her age and the pathology of her cancer, her risk of a new primary might be higher than her risk of mets. But for some, those younger who had an aggressive pathology, the risk of mets might be higher than the risk of a new primary.

So, it depends.

I am one of the lurkers that never posts, but I want to agree with rumor about the title of this thread. I know (because i have read it from the beginning) that some don’t like it but personally I think it’s good if it catches people’s attention - the “Not Want to Know’s” as rumor puts it. There are far too many people, including MOs, who seem to feel that the less you know, the less you will worry. Probably true. But I don’t think that burying your head in the sand (whether it has to do with cancer, your financial situation, or anything else) solves anything and in a lot of cases, just ends up making things worse. If the title scares a lot of stage 1 (or 2 or 3) women into reading this thread, it will be to their benefit. They will be far better educated and have a very realistic understanding of where they stand (thanks to Beesie and others who provide a wealth of information that is invaluable). And they will understand that the odds for them may not be 30%, or 20%, maybe not even 10%, but at least they will know that their odds are not zero, never were, never are going to be and that they should remain vigilant and keep their head firmly unburied!