Anyone with low oncotype score have a recurrence?

Sweetie1972

Just curious if anyone with low score that opted against chemo if your cancer returned down the road

Thanks for any input

mari65

That's a good question, I would like to know also.

Anonymous

deleted

lekker

When you get an OncotypeDX score, it comes with a risk of recurrence percentage. By "risk of recurrence" they mean distant metastasis (bones, organs, brain). Your risk is based on the assumption that you have surgery (plus radiation as required) and complete 5 years of daily tamoxifen. Even low risk as calculated by Oncotype does not mean no risk. I received a score of 13 which correlated to a 9% risk in their opinion. That means that for every 100 women with my tumor profile, 91 do not have metastatic disease within 10 years and 9 do. Adding adjuvant chemo doesn't take that number down to 0 - nothing does. And not to be depressing, but their 10 year cutoff is not some magic survival milestone. The risk of distant recurrence for ER positive tumors never goes away. So what does it mean for treatment decisions? For low risk, ER positive tumors, chemo doesn't drastically improve the above numbers and therefore is considered to potentially do more harm than good.

cookiegal

I think there are a few on the boards.

Again oncotype only addresses mets, not local recurrence or new primaries.

jessica749

I believe the oncotype test is relatively new, might have been developed more than 5 yrs ago but not in wide use beyond the last 5 years or so...

exbrnxgrl

Regardless of how new it is, as someone stated earlier, low risk doesn't mean no risk. Nothing will bring your risk down to 0%, even doing chemo.

riverhorse

It is amazing to me, now that I am a victim of BC, that the world seems to think that we reach a point where we can consider ourselves "cured"   Looking at these boards would certainly disabuse anyone of that idea.  There is no possibility of being "cured" only being in remission or NED.  I do wish the PINK crowd would get it and concentrate on curing the disease.  I for one had a yearly mamo -- never saw it.   

As exbrnxgrl points out there is no "zero" chance of recurrance, even if you are stage zero with a ocnotype score of zero.   People only die at Stage IV, that's where the research money needs to go.  

jessica749

I so agree with you Riverhorse. The documentary Pink Ribbon Blues, based on a similar book, was so informative to me on that front re where research $ go, - And more importantly don't go - with regard to stage 4 treatments and bc cancer origins. Specifically with regard to Komen Foundation, too



Exbrxgrl-not only is the oncotype dx just another, albeit possibly more accurate, bet hedging etc, but as you and others well know - but I'll repeat it - the stats are "good" for 10 year horizon. ER+ bcs can and do recur after 10 yrs.

(If I recall correctly- all the hoopla on the latest data proving 10 yrs of Tamoxifen is better than 5 yrs - has to do with lowering recurrence of bc AFTER the 10 yr mark. Which shows how real - no matter how low the odds - the risk of recurrence can remain after 10 yrs.)

rozem

i just met with a 24yr breast cancer survivor yesterday, she told me she had a mastectomy and tamox no chemo or rads.  She told me the doctors told her that she was cured after the mastectomy.  I didnt even get into it with her, at this point there is no point but im shocked that entering the cancer world she did not know this not to be the case (unless thats what they told everyone 24yrs ago that msx=cure).  Once you have been diagnosed with invasive breast cancer even with all the treatments your reaccurance rate is never 0 like the others have said...sobering but true

Charz

actually, i tend to highly disagree with everything said about there being no true "cure". I believe this to be very misleading.

i met with several oncologists from top centers and all of them indicate that with breast cancer there is a true cure versus other cancers in a vital organ such as the liver or cancers like multiple myeloma where there is no true cure. One oncologist from hopkins told me that in fact about 70 percent of women with stage 1/localized breast cancer are CURED with surgery alone. cure, meaning that the cancer cells have been removed and gone after surgery. They have no breast cancer cells left in their body (AKA Are Cured) because their cancer remained localized, did not travel anywhere through the lymph and the blood and was removed.

Not every woman has floating cancer cells called Circulating Tumor Cells (CTCs). These according to doctor Love are present in about 20-30 percent of breast cancers- all stage. This is why some women with stage 1 or no lymph/blood invasion can go on to stage IV. There was in fact spread (CTCs) and the woman's cancer was not fully removed. For these breast cancers, adjuvant treatment is given in the hopes that the adjuvant treatment will kill these CTCs. Adjuvant treatment does in fact work to kill these cells in many cases. Size of tumor is not the only predictor of whether women have CTCs and that is why our cancers are classified and treated differently. Having a low oncotype, for example, is one way doctors make predictions on whether women might have CTCs and how the cancer might behave. Of course, not 100% accurate (sadly), but still a new predictor.  

Of course, women that are trully cured of their invasive breast cancer still have cancer stem cells capable of multiplying again and forming new cancers, but so does everyone in the general population. The only reason a doctor can't tell you you are cured is because they can't tell you specifically because we have no technology or methods of determining who has dormant cancer cells remaining, traveling around the body, and who does not. This does not mean that you are not cured or that there is no cure. It simply means they can't tell you you have been cured, YET. This is why I find it misleading when i hear women say "there is no cure, there is no cure". In fact there is a cure for some women.

As for the women with no CTC, no lymph nodes, no lymphovascular invasion, there IS a cure. It is true that there is not enough of a cure. Doctors can't cure ALL women who have cancers that have spread 

Charz

rozem, a woman who has survived for 24 years is most likely cured. Even if it is ER positive, this is a very long time of survivorship. 

AND, women with true DCIS (not DCIS that actually has a invasive component that was missed) are cured one their DCIS is removed. They can develop new DCIS because stem cells still exist and probably the same genetics, biological conditions, but they are cured of any precancer once it has been removed.

riverhorse

Charz

Re: DCIS  I think the current thinking is that DCIS is NOT CANCER.  In that case they are not "cured" as they never had cancer.  Current thinking is that most would never develop BC even without treatment. 

Re: CTC  I have an acquaintance who is stage 4 with zero CTC.  There is a difference between cure and NED.   

I am a person with no lymphnode involvement, no CTC and no LVI.  If you look around the boards you will find some with those same characteristics who go to stage IV.  Of course those many do not, but again until you die from something else, you are not cured.  In fact a friend of mine's mother who had BC, and a MX died of something else.  They did an autopsy and guess what ?  BC in the other breast.  So did she die of BC -- no, was she cured -- also no. 

It is really an awful situation and we would all be better served if the scientific community did not look simply at removing tumors as curative, but treating tumors for a real cure. 

Racy

Charz, your eloquent explanation makes sense to me. I am not a scientist or doctor, but I think you are right.

Colt45

I think there is no cure currently in that there is nothing you can give to everyone with cancer that will "get rid of it".



I think we have treatments.



I think some people ARE cured of a particular cancer with treatment(s) in that the cancer that was treated NEVER comes back.



Those people can still get a different cancer.



Some people who never get diagnosed with cancer may have the same conditions occurring in their bodies unbeknownst to them that people who HAD cancer, were treated and never had the cancer return do------and we don't say that those people HAVE cancer. We don't say that they are NED. We say they don't have cancer.



We don't know WHO the cured people are. But that doesn't mean that people haven't been cured.



JMO.

Beesie

Charz, I agree with you completely.  I think you explained it well.  Many women are cured of breast cancer by their surgery/treatments.  If all the breast cancer cells in the breast and any rogue cells that might have travelled into the body have been surgically removed and/or successfully killed off by treatments, then there is no chance of recurrence and the patient is cured.  That doesn't mean however that a new breast cancer might not develop at some point in the future. So the issue is not that women can never be cured of breast cancer; the issue is that we don't have the screening tools available to tell us who has been cured and who is still at risk of recurrence because some breast cancer cells remain, either in the breast or in the body.

riverhorse, it is not true that "the current thinking is that DCIS is NOT CANCER".  There are some within the medical community who have taken that position, and others who vehemently disagree. A working group recently made a recommendation that DCIS and other Stage 0 cancers be reclassified but that was a proposal only - it has not been accepted and it most certainly does not have universal support.  At this point, all of the official bodies on staging and cancer (AJCC, NIH, NCI, ACS, etc. ) continue to refer to DCIS as the earliest stage of breast cancer. 

rozem

charz - I realize that after 24 years her BC is cured - what i was surprised to hear was that her doctor told her after surgery that she was cured.  Im not sure how any oncologist can make that statement in that she was newly diagnosed with invasive cancer - yes with the benefit of 24 years of NED we can make that statement but I dont think its accurate to make it at the time of surgery

Yes i do believe people are cured - even those with LVI, lymph node involvement etc

dogsandjogs

My MIL got a recurrence 25 years after her breast cancer. It spread to her bones.

I was told at the time of my surgery in 1982 that there was no cure for cancer, and that I would probably die with it (not of it!)

A recurrence was mentioned. He said most cancers don't recur after 5 years. No mention was made of a possible new cancer.

Which is what I got in the other breast 29 years later. A new primary-

jessica749

Re cured after surgery - "not sure how any oncologist can make that statement"



My mo has had some good, if unsettling , quotes, i think. One being: "Consider yourself cured, until proven otherwise."

riverhorse

Certainly everyone is entitled to " consider yourself cured until proven otherwise". Cured or in remission are just words. The problem with the " cured" label is that the rest of society then continues to think that early detection, awareness etc are all we need to eradicate the disease. Approaching it as a disease that always has the potential to reappear can keep researchers focused on finding a cure for stage IV rather than more awareness. But that is just my opinion, only words.

Charz

dogsanddogs, it is hard to use personal stories as examples because we simply do not have all of the facts such as what type of treatments your MIL had, what stage cancer she had, etc. treatments are so different today and cure probably applies to even more women now. the fact is that the majority of people who make it 20+ years after a breast cancer diagnosis are cured and recurring 25 years down the road is extremely rare. it could also have been a new breast cancer that your MIL had or could have been an occult tumor that wasn't seen, but that spread. of course women can get new primaries.

riverhorse, there has been a lot of talk about reducing the emphasis on awareness and directing money to other areas. this debate even made the ny times magazine front cover just this year. i think we can all agree that we need a cure for ALL women, but im not sure emphasizing that there is "no cure" helps all the women who have been diagnosed and their families, nor is it accurate.  i am simply trying to say that for some women, their initial disease will never ever reappear because it was removed with surgery. The majority of women with local disease are indeed cured. Going back to CTCs, there is no current method to accurately test for all present CTCs, if we had this, we would be much closer to being able to tell women who is cured and who is not.

Also, I for one was relieved to be diagnosed with a cancer for which there was so much awareness. Unlike some on this website, this pink season does not turn my stomach. I have met people diagnosed with rare cancers who can't even find support forums to toss around information on their cancers. There are other cancers for which the survival rate for stage 1-4 is under a year and this hasnt ever changed. Do we have a hell of a lot further to go? i think so. Triple negatives and her2+ don't often benefit from early detection because they can be so fast growing. We all understand this and I agree in terms of where our research dollars are going, much more should be going towards finding a cure for all different types of breast cancer and all women diagnosed, particularly stage iv... as well as prevention. I just sometimes find this website depressing because i hear a lot of talk about how their is "no cure", and "always risk" and "never 0 risk", and im trying to point out that in some sense this is overstated because many women with local disease will never see their disease again.

Beesie

Charz, yes! 

I love this website and I think it's extremely valuable for someone who is newly diagnosed, but I agree with Charz that it can be depressing sometimes.  There is such doom and gloom - so many statements about how a recurrence is "inevitable" and how we can never consider ourselves to be cured.  And if someone voices a concern about anything ("I have a small red spot that looks like a pimple, right near the scar line"), inevitably someone will come by and say "Not to scare you but..." and then she'll regale the already worried woman with a horrifying anecdote about what happened to her or to someone she knows ("I thought it was just a pimple but then....").

The majority of  breast cancer diagnoses are early stage. 

The majority of early-stagers survive their diagnosis.

Most women do not have a recurrence.

Most women who are diagnosed with breast cancer are only diagnosed one time.

Of course there are women who land in the minority and who are diagnosed late stage, or are diagnosed early stage but develop mets, or have a recurrence, or develop a 2nd primary BC at some later point in their lives. Just by virtue of having a diagnosis of breast cancer, we've all started off in the minority.  Approx. 12.5% of women will get breast cancer during their lifetime, which means that 87.5% of women won't ever get breast cancer.  So we're all in that 12.5% minority group.  But that doesn't mean that we will continue to be in the minority. Some of us will be, but most of us won't be. It's important to be realistic, which means recognizing the risks but also understanding that in the end, most of us will be okay and will beat this thing. We should always remember that, both for ourselves and for when we are offering advice to others who come here with concerns.

Racy

Awareness, treatment and cure are all worthy of focus and attention.

KimAZ

Curious, after surgery do we say we 'have breast cancer' or 'had breast cancer'? I've been skirting the issue by telling people I was 'diagnosed' with breast cancer then letting them know where I am with surgery and adjuvant therapies (if appropriate). Maybe it's splitting hairs but I prefer to believe all the cancer cells were removed during surgery and follow on therapies are insurance. 

TwoHobbies

Some advice for those who find the website depressing sometimes.  This is not criticism, it is honest advice to you from my experience.  The answers you hear will not always be favorable.  So if you don't want to get scared, don't read a thread that starts with "Anyone with a low oncotype have a recurrance".  Move on. 

When someone posts about a symptom and someone responds, "Not to scare you, but..." the intent is that person not ignore their symptom but get it checked by the doctor.  It would not be helpful to that person to say "don't worry about it", right?     

farmerlucy

Kim - I absolutely positively say I HAD breast cancer!!

The whole recurrence thing is a mind bender. It is much harder earlier on, but as time passes I find I am finally getting a grip on my fear.

Beesie - Thanks for another wonderful post. It is very encouraging!

Hugs to all my sisters!

src3acs

Hi KimAZ.....when people ask I tell them I was diagnosed with breast cancer, had a bilat MX and at this moment I am cancer free.  I asked my MO what I should tell people when they ask.....am I cured, am I in remission??  She liked my "at this moment I'm cancer free"  She said there really isn't anything else to say.  Healing and healthy thoughts to everyone  

Beesie

TwoHobbies, I've been here for 7 1/2 years.  I have seen many women that I started out with die of breast cancer.  So I understand that sometimes, the answers to questions aren't going to be favorable.  I don't believe in sugar-coating the risks or downplaying what's likely to happen, even if what's likely to happen isn't very good.  But that's not what I was talking about in my post.  I wrote my post in the context of this being the Stage I forum, and this thread being one asking about low oncotype scores.

When someone asks "Anyone with a low oncotype have a recurrance"? they are asking because they are scared of what might happen if they pass on chemo.  But as we all know, even those with low oncotype scores sometimes have a recurrence. If someone has an oncotype score that indicates only a 3% risk of recurrence, this means that 3 women out of every 100 who had that score who will have had a recurrence.  Of course it also means that 97 of the 100 women with that same score will not have had a recurrence.  The problem comes when that question is asked on this board, where those doing well tend to leave, and those who have problems and recurrences tend to stick around or return. The 97 women without a recurrence have all gone off to live their lives; they aren't hanging around here.  But the women who had a recurrence are more likely to be here.  So one of them replies.  "Yes, I had the same oncotype score as you and I had a recurrence."  Suddenly a 3% risk becomes a 100% risk, because 1 person answered and that 1 person had a recurrence.  And this might drive the person asking the question to make a treatment decision that ultimately puts her health at greater risk, choosing chemo, for example, when there is minimal benefit and the health risks from the chemo itself outweigh the benefits in terms of how much the chemo will reduce her breast cancer recurrence risk.

That's why if I see a thread that's entitled "Anyone with a low oncotype have a recurrance", I don't move on.  Because it's important that as much as possible, facts and real data be presented, not just individual examples and anecdotes that can be very misleading and that can lead to decisions that are not in the best interest of the patient.

I believe that when someone says "Not to scare you, but..."  that individual knows full well that she is about to present a scenario that will be scary.  Honestly, I never understand the point of doing that. The way I see it, there is a huge difference between urging caution and telling someone to check something out - "it's probably harmless but you should get it checked out because in rare cases this can be something serious" - versus telling them that someone you know had that same symptom and ended up dying of mets. It's possible to be honest and to suggest action without scaring the crap out of someone with horror stories and worst case scenarios.  It's the horror stories and the worst case scenarios and the fact that we are constantly being told that we can never consider ourselves cured that I sometimes find to be depressing.  Especially since most of the time, the truth of the situation, the real risk, is very different than those scary tales, particularly here in the Stage I forum.

farmerlucydaisy, you're welcome!

bluepearl

Well said Beesie.

Charz

yes beesie, my thoughts exactly. very well said.

sbab49

Oh Beesie you are so correct about the horror stories scaring us to death. All the horror stories have scared me to the point of not being able to allow myself to take letrozole (Femara). I was prescribed letorozole 4 weeks ago and I just get sick to my stomach when I try to talk myself into it. On the other hand the fear of recurrence from not taking it is also very frightening. My DD's MIL finished treatment 6 months ago for IDC stage 1 (surgery/rads) and was just dx for BC in other breast. She has faithfully taken tomox. So one just never knows. The BC was probably there before but not yet to the point of being detected. If only none of us had to be here....but here we are and I am so grateful for all the love and support that we find here. As if BC isn't enough to worry about now my son is going through testing for colon cancer. Having lost my brother to a very rare bladder cancer I am truly scared nearly out of mind for my dear son. DAMN Cancer anyway. If only all the money donated for research actually went directly to research perhaps a real cure for most cancers could occur. All we can do is hope and pray for the best.