Will 30% of Early Stage (1-IIIA) go on to metastasize??
Comments
-
I agree with going online, especially to this board. Docs don't know everything. I've dug through this board and wound up teaching my docs a thing or two. To say stay offline is like cutting a finger off. With cancer you better dig where you can and use what you find here to share with your doc to make decisions. I was amazed how much more I learned from here than I did with all my doc appts, nurse navigators, and classes!
0 -
I completely agree that this website is a wonderful source of information. I was in a state of supreme ignorance for many years, not realising that my first breast cancer in 2003 was not "cured". No medical professional had ever even hinted to me that I should be getting regular MRIs with ILC or to consider prophylactic surgery or anything other than the annual mammogram and ultrasound which missed a 4cm tumour for years. I have learnt so much on here and been so impressed with the strength, knowledge and gutsiness of all who contribute.
0 -
"As to the 30℅ figure scaring people, I have mixed feelings. As someone with triple negative cancer, I was frustrated when I saw a five-year survival rate of 99℅ prominently displayed at Susan G Women's website. That suggests the war is practically won, but that's scant comfort to me when my personal prognosis is far less encouraging. When I got my diagnosis, so many women suggested I would be absolutely fine because they're led to believe early detection is basically a guarantee of long survival. To me, that might make people less likely to donate to breast cancer research, which would be a disservice to the thousands of women who continue to die of breast cancer annually. I'm not suggesting we needlessly fill newly diagnosed women with dread and anxiety, but neither should the general public think that breast cancer is cured."
I agree completely! Because of the pinkwashing and because of my two older family members who survived breast cancer in the 80s (although the tough treatment most likely hastened my grandmother's death of other causes), I didn't know that responsible people who kept on top of their health still died of breast cancer. I thought the only people that died missed their doctor's appointments or ignored an obvious lump for a year or blew off the recommended treatments. Up until I got my ultrasound report and googled "lymph nodes in breast cancer" I was convinced that if the lump was cancer, I'd only be Stage 0 or l because I did the right early detection things.
I don't think we need to scare people who are already terrified, but some people I think do need to be a little shocked into taking their diagnosis seriously (those tend not to be people on this board though, people who post here do tend to take their Dx seriously and they're here to research and get good information).And the public in general needs to wake up and realize the just because strides have been made in treatment, breast cancer is still not an easily curable disease. But I don't think public perception is just an issue with breast cancer. Immunotherapy is hailed as a great breakthrough in melanoma and lung cancer, but plenty of people don't respond and are still dying of those diseases. The media would have you believing that immunotherapy is a cure for everyone.
0 -
muska, I doubt anyone here is ignoring their chosen mo. But few take one persons advice solely. I stand by my decision making process.
0 -
I also agree that much of the public has bought into the line "early detection saves lives." So, presumably, "smart" women get their annual mammograms, and discover BC when it's most treatable. What most of the public misses is that BC is not one disease but a disease with several variants, some of which are more aggressive than others.
0 -
Elaine Therese, you're very right. Of course, until it hits you personally, most really will never understand. Even a lot of people who've had BC do not truly understand. That is partly from media, but also partly from the medical community, who in trying to be reassuring, can spread misleading information.
0 -
My oncologist likes to warn people about reading vast amounts of information that is not vetted. She also wants to be sure that patients focus on getting well.
I have been teaching research methodology for 20 years and this includes knowing the difference between biased sources and information supported by university-based research. Errors on this thread have included quoting statistics that include all breast cancers which, in my view, is non-reliable because there several types of Breast Cancer, some easier to treat than others. Additionally, reading statistic after statistic is not healthy. You are not a number. I think most people know this; they just find it interesting.
My partner is a research professor. He knows that reading about your own health is one of the beautiful things about the Internet, but you are naive in thinking that many women on BCO aren't confused by what they read.
When I said that a lot " gets thrown around" on this thread, I was not only talking about stats and unreliable data, but rude comments to each other.
And
by the way, my oncologist at Dana Farber says that BCO is an excellent site.0 -
I do look things up on the web, but for medical issues I try to stay with a reputable site like Mayo Clinic. And I am usually looking for definitions or specific SEs or procedures, not statistics.
0 -
Readytorock said..."The only hard part is losing your hair."
Just wanted to say I've lost more than just my hair and that's not the only hard part, This thread makes me sad.
Maryann
0 -
I have found some very good information and have learned more from discussions on this website than in the doctors office.
It is knowing the source and reading through the studies. I haven't come accross many naive people on this website.
I don't tend to judge people or blindly listen.
0 -
gardengypsy, given that there are around 1,500 posts in a thread devoted to recurrence statistics, there's bound to be errors. Perhaps people should, where possible, reference their stats for fact checking. There have been many attempts to point out differing characteristics of different bc cancer types. While rude comments do happen from time to time, they are certainly a small minority.
The obvious reason this thread keeps coming back into the active list is that the topic is of major concern to so many. Site users should remember that this, and any thread they don't like, or don't want to see, can be blocked.
0 -
Gardengypsy, you said, "My oncologist likes to warn people about reading vast amounts of information that is not vetted."
I completely agree with that. Many an epic battle has played out in the alternative forum on exactly this point. There is an enormous amount of complete BS about cancer and its treatment going around the interwebz. This is a problem and a lot of it makes me downright angry. Coffee enemas will not cure cancer, and just because they were listed in a 1920s nursing manual as a remedy for severe constipation, that doesn't mean squirting coffee up your butt 3 times a day will make cancer go away. Steve Jobs is sort of the tragic poster child for falling for this kind of stuff.
It is also true that it can be hard to judge even totally legit, medical information, when you don't have a medical background. I skip the studies that have titles like: "The molecular down-regulation of ^&*%447788 in the angiogenesis of bla-bla-bla" because I know that I have no clue what they are talking about and that the effort involved to learn enough to understand this won't really help me much.
Still, it is equally annoying when a doctor assumes that I am not able to recognize quackery when I see it. I am not a professor, but I have worked as an editor in academia, and have been involved in other research projects over the years. I have at least a basic idea of what constitutes evidence and what doesn't. My reading comprehension is fairly good and I am able to track back citations.
It took me at least 6 months to weed the wheat from the chaff, info-wise, and build up a basic inventory of terms that were pertinent to my situation. However, at this point my doctors talk to me like a human being and help me fill in my knowledge gaps without demur. This also means that they sometimes have to say "beats me!" or "you are right." Many doctors avoid having to say this to patients, which is, at least for some, partly why they advise patients to stay off google.
My onc was pushing recon on me, and when I challenged him on it, it turned out that he had almost no clue what is involved and what the failure rates are for someone like me. All he really knew was "that it hurts a lot," and that it often ends up looking like, well ... He ended up thanking me for educating him, after I sent him studies on the stats etc.
0 -
Bad-at-usernames and others, I completely agree that as unpleasant as this discussion may be at times, it is also important. The pink-washing going around is a disservice to those of us living with this disease and has spread a lot of misconceptions.
0 -
I am not sure about what is so unpleasant on this particular thread but it is a popular one. Many of us find ourselves wondering about our chances of a distant recurrence. I have been thinking about it from time to time especially since I received my oncodx score 23% chance of distant recurrence in 10 years with tamoxifen alone. I wonder about that and how does it differ from using anastrozole instead of tamoxifen. As a mathematician you know I think of things in terms of likelihood and do like to gather data and read studies. I believe I am fairly competent and doing scientific research. Sometimes I feel like fellow members imply we are not capable or spread unreliable info to others. I really haven't heard anyone say don't seek or listen to medical oncologists. Understanding your disease takes time and I wouldn't expect my oncologist to be my sole provider of information especially now that I see him for a grand total of 5 minutes once a year. But if I have a specific question I do ask. He claims that he has seen anastrozole use being as much as 50% more effective with my numbers but wouldn't take that to the bank.
Maybe when I pass that 10 year time frame I wouldn't be that concerned about recurrence I'll let you know when I get there.
0 -
I have very fortunately passed the 10 year date after ending long term use of Letrozole. Now it feels like the parachute was removed - free falling. Peace of mind - nope.
0 -
labelle...as usual I completely agree with you. My MO at a major NYC university based teaching hospital told me that the research is very outdated. I'm not sure how we can have an intelligent informed discussion until we have better information. Good luck to all navigating this disease.
0 -
I'm lucky that my oncologist welcomes the intelligent questions I ask, unlike my surgeon who seemed to perceive questioning and possibly declining recommended standard of care as a moral failing. Paraphrasing, "Either you have hope or you don't." I have a graduate degree & I think my MO could tell that I was judicious in reviewing online material, but agree that it can be daunting to find studies that can be meaningful for an educated layperson.
On a personal level, I'm letting FB Friends know about triple negative being an interval cancer so they don't ignore a lump thinking it unimportant because they had a mammogram within the past few months.
Lyn
0 -
In case it is of interest, I note there is at least one Oncotype validation study that assessed the risk of distant recurrence with an aromatase inhibitor (anastrozole):
"Prediction of Risk of Distant Recurrence Using the 21-Gene Recurrence Score in Node-Negative and Node-Positive Postmenopausal Patients With Breast Cancer Treated With Anastrozole or Tamoxifen: A TransATAC Study"
http://ascopubs.org/doi/full/10.1200/jco.2009.24.4798
(pdf version available for free under PDF tab)
9-year distant recurrence risk is reported by recurrence score.
BarredOwl
0 -
VLH what does interval cancer mean? That's the first time I've heard that term.
My oncs like that they can talk to me directly without having to sweet talk. We even use the big words! I was told we just wait to see where the cancer shows up next and my MO is hoping to get a year out of Arimidex before another show of cancer. It's been 9 months.
0 -
Yes I have seen the ATAC study thanks for the link.
0 -
barbe - an interval cancer is one that was not detected on routine mammographic screening, or that develops within 12 months of a normal screening result. Aggressive or rapid onset tumors can present in this way, thus the reference above. I had a completely clear mammo with a palpable lump, so could be termed an interval Her2+ cancer. Even the ultrasound was not conclusive, but suspicious enough to warrant a biopsy. I also had a larger positive node missed by pre-surgical MRI.
0 -
cp, God willing I hope you see another 10 years NED. I would love to see this disease wipe off the earth.
0 -
ChiSandy, darn, I am 41, had stage 1A and oncotype 14 so no chemo. Reading your post made me rethink my actions....maybe I should have pushed my onco to proceed with chemo...
This article about higher rates of metastasis from early stage tumors got me all panicked again. I'm all freaked out now.
0 -
FUBC chemo mighty not have even worked on your ER+ tumours so you can't even second guess it. That's what I've said about so many great changes in the past 8 years.
Plus LCIS and ILC are beasts of another color. Fortunately nowadays treatment isn't automatically thrown at you just because someone else got it. It's becoming more personal to fit the individual's markers.
I think you've given yourself a great chance with your mastectomies. Now it's up to you to be your own advocate if you develop a new symptom. You still have to do BSE on your chest.
0 -
FUBC this study sent me into a tailspin last week. Made me feel like things are hopeless. I am only 39 and also wonder if I should have done chemo as well, but my oncotype score (9) and my doctor's strong opinion both showed that chemo would do more harm than good. I think we have to remember that years of research and real life experience does show that the vast majority of people with our tumor size, grade and other characteristics go on to live full lifespans. Maybe this study helps explain that smaller percentage of those who don't. The bottom line is that we do have so many long term survivors of breast cancer--not enough I think--but a lot.
And the only reason I even got the oncotype test is because my doctors agreed that there is always the chance that a tumor can be more aggressive than pathology shows. And the whole reason we are on hormonal treatment is to starve any cells that did escape, so in the end we are undergoing systemic treatment, just a different kind. I am trying to keep these things in mind when my mind goes crazy after reading things like this study.
0 -
To give you an idea of how effective hormonals are (anti really) when I became stage 4 that's what I was put on.
0 -
KathyL, FUBC and everybody else who got upset after reading the study that was published last week and referenced on a couple of threads. I am including the link posted by TravelText : http://medicalxpress.com/news/2016-12-reveal-cancer-tumor.html.
Based on what I read in this abstract, researchers manipulated some pathways in a pre-clinical study ( on mice? ): switched on an oncogene, turned off a tumor suppressor and finally, activated a growth switch some time later. To me this looks more like another good theory trying to explain how cancer may progress but this is way too far from proving that is necessarily the explanation why some women progress and some don't. This is a pre-clinical study. If I got it correctly and I admit I didn't have the time to read everything or go to the original publication, three important breaks must occur in the system in a particular order for this to happen, which in itself reduces the odds significantly. Just another theory that would require years of research and multiple studies to be confirmed in humans. But very interesting.
0 -
Okay everyone.
And 
Before this new study came out, what did we know?
- We knew that even with an early stage cancer, certain conditions put someone at higher risk of mets. HER2 status. Triple negative. Grade 3. Younger age.
These are all factors that have been built into our risk assessments for years. Our oncologists understand that these factors increase our risk, and they incorporate these factors into their recommendations about treatment.
- We knew that in most cases where mets develops, the breast cancer cells escaped the breast well before the cancer was removed or even diagnosed.
How did we know this? Because most women who develop mets (most but not all - yes, a few of you reading will have had a localized recurrence first) do not first develop a localized recurrence. What this means is that the localized treatment - surgery and/or rads and/or hormone therapy - was effective. The localized cancer, i.e. the cancer in the breast, was eradicated. And yet despite this, some women still develop mets, maybe 1 year later, maybe 3 years later, or 5 years, or 12 years... The only way this could happen is if those breast cancer cells that developed into mets moved into the body sometime before the localized cancer was successfully removed and treated.
- We knew that while chemo & hormone therapy does prevent the development of some cases of mets, it does not prevent all mets.
We've always known this. We've always known that in some cases, for some people, there are some breast cancer cells that are not successfully killed off by systemic treatments, and as a result, there is still a possibility that an individual who had chemo and/or takes hormone therapy might develop mets.
This new study isn't telling us anything new in this regard. This study is not suggesting that anyone is higher risk than what they, and their doctors, believed. This study isn't challenging the risk models or suggesting that they are wrong.
If you have an early stage node-negative cancer and an Oncotype score of 10, and if you take Tamoxifen, your 10-year risk of mets is 7% (assuming I read the chart correctly). This is what your risk was before this study came out, and this remains your risk today, after the new information from the study. Nothing has changed. With a 7% risk, chemo is not recommended because the benefit from the chemo may not outweigh the risks from such a harsh, toxic treatment. This was what we knew before, and this hasn't changed.
This new study is simply providing new information about how mets might develop. The fact that the spread that eventually develops into mets happens early on isn't new; this report is explaining that the spread might start even earlier than we thought. The fact that some cells might be resistent to chemo isn't new; this report is explaining one possibility on why that might be.
Something else to keep in mind. This study is presenting a hypothesis on how mets might develop based on the manipulation of cells in a petri dish, and based on mouse models. Do breast cancer cells in our bodies change in the same way that they were manipulated in the petri dish? Maybe, maybe not. One finding was that in a petri dish, if DCIS cells are manipulated in a certain way as they develop, some of those DCIS cells develop the ability to metastasize when those cells are placed inside a mouse. Does this ever actually happen in our bodies in this same way?
Let's not over-react to a new study that presents potentially new information about the development of mets, but doesn't change or challenge anything we knew previously about our risk levels. This study presents absolutely no information that should change anyone's risk level or treatment plan.
Edited to add: muska, I was typing my post when you posted yours. Great minds think alike!
0 -
Great post Beesie.
0
