Will 30% of Early Stage (1-IIIA) go on to metastasize??
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I was in rush when I was posting this morning, so just to be perfectly clear, I was not suggesting that it's inappropriate for those who are not Stage I to post here. Of course anyone can post. There have been some wonderful contributions to this discussion from women who are other stages.
What I was observing however was that the recent discussion about whether or not one can ever be 'cured' of breast cancer or whether one should ever consider oneself to be 'cured' has been led for the most part by those who are Stage IIIA (very late early stage - and by some definitions, advanced stage) and Stage IIIB (advanced stage). I would never go to the Stage III forum and tell Stage III individuals how they should think and feel about their diagnosis and prognosis. Why is it okay for those who are Stage III - and who have a very different prognosis than those who are Stage I and therefore are likely to have a very different perspective on breast cancer - to come to the Stage I forum and tell Stage I women how to think? I'm not talking about participating in and contributing to the discussion. I'm talking about actually telling Stage I women that they are wrong in their opinions and how they feel, if they happen to believe, as I do, that some cases of breast cancer are in fact cured by surgery and treatment (even if we can never really know for sure). Read what actually was said in some of the earlier posts. That's what I feel is inappropriate.
Momine, I understand that you 'have a real problem with the idea of "cure" in BC'. I get that, and I would never suggest that you are wrong to feel that way. I suspect however that how you feel might be influenced by your own situation and diagnosis, which is very different than that of someone who is early Stage I, as I am. So it's not surprising that we might feel differently and have a different perspective on whether we might be cured or not. I won't tell you that you wrong, but please don't tell me that I am wrong. Especially here in the Stage I forum. In the Stage III forum, if you want to rant that some silly Stage I women actually believe that individual cases of breast cancer are often cured, go for it.
Barbe, what you mentioned about not being able to start Tamoxifen 6+ months after surgery makes no sense at all. Tamoxifen (or an AI) can be started at any time. I actually had that discussion several times with my oncologist. As I recall (and I just did a search to verify my recollection) what your oncologist told you was that chemo had to be done within the first 3 months after your surgery. And that window had passed by the time you saw the oncologist. So it was a moot point by then. However, as I mentioned in one of my earlier posts, at the time you were diagnosed, treatment guidelines recommended chemo for anyone who was Stage II (as you were based on the staging criteria at that time) and anyone with positive nodes (including micro-mets). The Oncotype test was new and was not yet incorporated into the treatment guidelines, however there were some women at that time who did have the Oncotype done, and if they had a low score, they might have passed on chemo, even being Stage II. But without the Oncotype, chemo was pretty much a given for a Stage II / node-positive diagnosis back in 2008/2009. As for chemo not being given to those who have slow growing cancers, that one was addressed (and debunked) in another thread recently where you made the same comment. Chemo is often (but of course not always) given to women who have slow growing cancers. As for the effectiveness of chemo on slow growing cancers, take a look at the CancerMath Breast Cancer treatment calculator (http://www.lifemath.net/cancer/breastcancer/therapy/index.php). Even for someone with a slow growing cancer (I input grade 1 papillary), adding chemo to the treatment regimen cuts mortality rates by 30% - 40% (depending on whether it's 2nd generation or 3rd generation chemo). As for rads, while it is usually not necessary after a MX, exceptions are often made when the surgical margins are close. As I recall (and again verified with a search), after your surgery you had a concern that your cancer was right up against the chest wall and you were very worried about chest wall mets. So with proper medical care - had you not fallen through the cracks and had you been sent to see an MO and an RO immediately after surgery, you might very well have ended up with recommendations for chemo, rads and Tamoxifen. Whether you would have chosen to have any or all of those treatments, and whether it would have made a difference, of course nobody knows.
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if 30% of stage ones metastisize, then 70% don't. Aren't those 70% cured?
if stats are not gathered for metastatic recurrences, is 20/30 % just a guess?
aren't all stats on mets at least 5 and probably nearer 10 years old and already obsolete?
if those of us who are just diagnosed can expect with reasonable justification up to 10 years ned, who knows what treatments will be available at that time?
stage 1 covers a very broad spectrum: grade, size, lv invasion, age at diagnosis etc, all with prognostic significance. my bs told me grade is now considered more significant than stage. I have a very good prognosis for which i am profoundly grateful. I intend to live as if i am cured. I know there is no certainty it won't recur, or that i won't have a heart attack or a stroke. That lack of certainty about the future is not just breast cancer, it is life.
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Ladies, a stage 3 intruder here again. This interesting thread is about discussing why a number of stage 1 women eventually progress after treatment. The thread was started as a question. A question usually means whoever asked it, wants to get some feedback. Naturally, some women who are higher stage joined the conversation and provided their personal stories illustrating the stats. I see nothing wrong with it unless you want to be in a bubble.
The concept of "cure" is mostly about semantics in my opinion. My very experienced primary care physician who certainly knows quite a few things about breast cancer, uses this word and I don't mind. He hopes for no recurrence for me and I hope so too.
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grainne, I am so happy that your onco said that about grade/stage!! I've been saying that since I was diagnosed!! That's why I don't take stage as seriously as grade. I've said I'd rather be stage III and grade I, than stage I and grade III. Nice to see the logic is making the rounds now.
Yet again, we all have the right to post our thoughts, opinions and stories. Whether you agree with someone's journey or not doesn't mean a thing. Keep your judgements to yourself and we can all play nicely in this sandbox.
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Hi grainne:
[EDIT: THE TITLE OF THIS THREAD HAS BEEN REVISED TO REFLECT IT IS A COMBINED STATISTIC REFLECTING SEVERAL STAGES. ALSO, PATIENTS FOLLOWED IN LONG-TERM STUDIES WOULD HAVE BEEN TREATED MANY YEARS AGO AND RESULTS MAY NOT BE REFLECTIVE OF MODERN TREATMENTS.]
The answer to the question set forth in the title of this thread is: No.
Re: if 30% of stage ones metastisize, then 70% don't.
Various assertions in the literature refer to 30% of "early stage" invasive breast cancers.
For example, one such assertion unsupported by any citation to the scientific literature stated: "Despite advances in the treatment of breast cancer, approximately 30% of women initially diagnosed with earlier stages of [invasive] breast cancer eventually develop recurrent advanced or metastatic disease."
"Early stage" is generally thought to include Stages IA, IB, IIA, IIB, and IIIA. So, this putative 30% would include patients initially diagnosed with a variety of stages and differing prognoses. It is not exclusively Stage I patients.
There were a few clinical studies performed in certain "early stage" patient populations with some longer-term follow-up that led to this dogma. However, one would need to consult the original study reports to determine the actual composition of the study groups in terms of stages, treatments received, the length of follow-up and actual findings.
Unless a study followed all patients until onset of metastatic disease (or death from other causes), one could not conclude that 70% don't.
Re: if stats are not gathered for metastatic recurrences, is 20/30 % just a guess?
Supposedly, there are some older studies with longer-term follow-up that looked at this type of question. Again (from descriptions of them), they did not pertain to Stage I only.
An unpublished ACS study used SEER databases and death certificates to ask from among those who died of breast cancer, what percent were initially diagnosed with "localized disease" (another term of art)? 28%, but it is important to understand that a determination of the percent of those who died of breast cancer who had "localized disease at diagnosis" is not a determination of the percent of a much larger population initially diagnosed with localized disease who will eventually be diagnosed with metastatic disease.
Re: aren't all stats on mets at least 5 and probably nearer 10 years old and already obsolete?
In general, it depends on the patient population, time period in question, length of follow-up, treatments received, and how they differ from current standard of care. Retrospective studies, such as those looking back into the SEER database and covering large periods of time, may indeed be limited by evolving diagnostic and treatment standards.
Around page 13 of this thread, I posted a link to this MedScape article discussing this question and citing this thread:
Google the title to access without (free) registration:
"The Mystery of a Common Breast Cancer Statistic"
http://www.medscape.com/viewarticle/849644#vp_2
To your last paragraph, here is a study that may be more meaningful to you:
Netherlands study: http://www.bmj.com/content/bmj/351/bmj.h4901.full.pdf
Note in the Box "What this study adds": "Tumour size and nodal status still have a significant and major influence on overall mortality independent of age and tumour biology in the current era of more conservative surgery and newer systemic (neo-)adjuvant therapies." Perhaps this will change with time, as mutli-parameter tests that probe tumor biology improve.
BarredOwl
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Lisey and Barbe: I am stage 1 and the standard protocol after my BLM would be 10-15 years of Tamox or alternative. No thanks on that because my onc showed me my stats and that nasty treatment, which I was on for 60 days gave me pedal neuropathy, which fortunately went away when I went of Tamox. The standard protocol would have had the potential of increasing my life span by about 90 days. Really not a viable option for me.
Most postings on this site are from a particular point of view based on the individuals experience with each health care professional they work with and for each treatment regimen. The determination of a great physician is that the treatment offered worked, if the treatment failed, then not so good. After my surgery I developed PMPS and had not been told of that potential side effect, so would I recommend my surgeon to anyone - definitely not. Had I come away pain free, he would get 5 stars.
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Momine, triple negative cancer has an unusual survival curve with a significant risk of distant recurrence in the first few years (compared to other types), which then drops markedly. Saying one is "cured" if still alive at Year 6 probably wouldn't be accurate, but there is definitely a dramatic peak in the initial years after diagnosis.
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IMHO, the topic is so contentious not because of the percentage of odds but because we have no control of improving them. If we may want not to visit countries infested with certain endemic diseases ,avoid certain harmful circumstances, seek timely treatment for certain diseases, etc, there is nothing we can do to prevent a recurrence or progression of cancer. This is were faith enters: we want to believe that we will not recur or metastasize, hence meticulous studies of statistics in a hope that we are on the favorable side of it.
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One brief comment on statistics for those who are into numbers. When citing the odds of the recurrence of breast cancer ( or progression to a metastatic disease, or dying from breast cancer, which are all different things), one needs to indicate over which period of time one wishes to know the odds: 1, 5, 10, 20 years , or else. The odds are calculated from a distribution curve that most likely is not linear (see, as an example, the non-linearly rising odds of getting cancer for women in their twenties, thirties, forties, fifties, etc.). This curve has to be built from experimental data for the same type disease with the same parameters, say, stage 1 patients with grade 1 tumors with no lymph node involvement ( further stratification may be needed according to the age group, menopausal status, receptor status, and has to exclude cases involving co-morbidities ). The curve is presented on the graph with time on the x- and probability on the y-axis. This type of graph then shows a probability density function : each point on the curve represents the fraction of the patients that recur within a small time interval (in math terms, the interval should be infinitesimal), for example during the first month after the treatment ended, the second month after the end of treatment, ...., the n-th month, etc.) . Say, you want to know your recurrence odds within the first 5 years. To do this, you have to calculate the area under the curve within the interval from 0 to 5 years (or integrate the probability density function on the interval from 0 to 5 years (or first 60 months)). This number will be different if you repeat the calculation for years 5 to 10 or for the other interval, say, 0 to 10 years, because the function can have peaks at certain year marks, say fifth and eights, for example, and flatten after, say, 10 years.) The problem is that these curves either do not exist or are difficult to come by : medical researchers tend to lump up all data for all grades of stage 1 or stage 0 , for example, and neglect stratifying them. Moreover, individual researchers work with a very limited number of cases that do not allow to do a reliable statistical analysis anyways. Even if a SEER registry is used, it's not complete, and stratification is difficult, not to mention the non-uniformity in the cancer treatment, that varies geographically and with time.
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I also very much relate to comments that the general public is ignorant to the fact that there is no cure for breast cancer, and there is no 5 or 10 year mark after which you can be considered to be cured. To my very private and very cynical opinion, people that are not touched by this disease want you to be "cured" so you stop drawing their attention to the issues of death and dying from cancer.
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Yup. I dislike Oct because that's the month where we get "informed."
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Yup. I dislike Oct because that's the month where we get "informed."
If anyone else dislikes Pinktober, the BCO October Revolution discussion board has put up an informative site: PinktoberSucks.com
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What really gets my goat is that pinktober gives the impression there is something you can do to evade BC.
Burns my hiny end, I did everything I was suppose to do and guess what.
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Labelle, some of this is perspective/semantics. I call it "succeeded in dying of something else," but others call it "cured." Personally, I do not like to use the word "cure" in connection with BC, for all the reasons already outlined.
On the other hand, My great-grandmother was like your husband's aunt. She was DXed back in the 30s, when she herself was maybe 45-50, had a mastectomy (no other treatment) and died at a ripe old age from something else.
Also, if we go with my semantics and think of all BC patients who were treated and are currently cancer-free as being in remission rather than being cured, then the treatment advances made in the last decades are actually very impressive. We may not have a cure, but more patients achieve remission and more importantly, much longer remissions than in the past. I was staged 3B. Years ago, I would have been staged 4 from the get-go. I would not have received treatment with "curative intent" and would most likely not be sitting here 5 years out discussing all of this. So although I do not consider myself "cured," I am thankful for these five years and hope for many more.
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Beesie, I don't think I have ranted and I would never call anyone silly. All perspectives are valid here. Also, I am not telling people how to feel. Likewise, I do not "feel" that there is no cure. It is a simple fact and whether it is acknowledged has implications for many aspects of how BC is approached – by doctors, patients, researchers, non-profits.
However, as already pointed out many times, by me and others, the residual BC risk for a stage 0 or 1 patient is very small and probably for most they have about as great a chance of being killed by lightning as presenting with stage 4 cancer somewhere down the line. So, the discussion about the semantics has virtually no practical implications for an early stage patient. It does have, however, serious implications for the community as a whole.
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Exactly:
Rozem: "i am not stage 1...but barely (2.0 cm tumor no nodes right at the cutoff between 1-2) I think we have all stages 1-3 chimming in because we are all considered early stage and possibly curable (I know the stats vary widely between stages) and as such we are all debating the notion of "cure" the stats of progression etc which we are ALL concerned about."
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Barbe, although an AI is usually the first choice for post-menopausal women, tamoxifen can also be used in post-menopausal women. So, even if you had received an AI initially, you could be switched to tamox when you recurred.
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Thanks for the link to the Dutch study, Barred Owl. The bottom left graph on page 5 does seem to indicate that in the modern era, some people, specifically those with tumor size of less than 2 cm, have a relative survival curve which lies pretty close to the general population. I guess that's as close to anything to a definition of a cure. N0 and N1 nodal status (less than 4 nodes) also look pretty good.
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All good points!
And for those still confused about chemo...chemo NORMALLY works on fast growing cells BUT THERE WILL ALWAYS BE EXCEPTIONS. That's why it affects hair, nails and stomach lining.
My recurrence was thought to be scar tissue as well, but after 8 years, I knew it was a new lump and insisted it be checked. It took 2 1/2 months before the biopsy that told me it was benign and they could take it out if I wanted. I wanted. It took another month for it to be taken out and found to be malignant. They went back and checked the biopsy from the month previous and said "Oops, that was cancer, too". Certainly glad I pushed. Perhaps a disadvantage of having a rare cancer missed on the first biopsy?
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I don't often post but feel it's important to add my story with regard to chemo and lower grade cancers. My diagnosis was stage 2b with positive nodes and two tumors. It was grade two with a mitosis rate of 1, the slowest growing cancer. I had chemo before surgery. At surgery I had a pcr, no cancer at all in the breast or nodes. So, although chemo may work best on fast growing cells, it most definitely also works on slow growing cells. I am so very glad that I had chemo.
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The residual cancer risk for stage 1 may be small, but it is not the same as the risk of being struck by lightening. My oncotype the first time (stage 1 diagnosis) was 16, which gave me a 10% chance of distant recurrence; chemo knocked it down to somewhere about 8% (paper is not in front of me). I recurred locally in 2 places (several inches apart) 14 months after finishing chemo (17 months after BMX with clear margins). Even though it was a local and not distant recurrence, 2 BSs said the chances of it coming back the way it did were way less than 1%. My oncotype was higher the second time, and it was done on the less aggressive of my 2 tumors. Because of the manner in which it recurred, 2 oncologists have now said my chances of distant recurrence are about 50-50. I was the exception, not the rule. Someone has to be in that small percentage, and it was me (and I eat a plant based diet, exercise daily, and am on the very low end of normal for weight), and that happens sometimes. I do not live in fear every day that something bad will happen. I just live. If/when it does recur, I will deal with it. In the meantime, I am vigilant, but then I was before my recurerence. My doc told me he were "sure" my lump was just scar tissue. He said 99% sure snd he said he never tells anyone 100%. I politely told him the only way to be sure was to biopsy it, so I requested one which he gladly did. It was cancer.
Had I assumed I was just a stage 1 with no risk, I would not have insisted on that and my tumors could have spread, but thankfully I knew better and advocated for myself. I know of 6 other people locally (not from BCO) who are stage IV after a stage I diagnosis. I also know of over 100 women who are stage I, who have never had a recurrence. There are a couple stage I gals from my original chemo group here that are now stage IV. So I definitely think the risk is low, but in working on ambulances for 30 years, I have never treated someone struck by lightning. Your risk for that is 1 in a million in a given year, and about 1 in 12,000 in your lifetime. It happens, but please do not compare that risk to the risk of stage 1 cancer advancing to stage IV. Stage I folks have a lower risk that stage III folks, but the risk is real, and comparing it to a lightning strike is dismissive of that risk. The bottom line is that everyone needs to be vigilant, but not live in fear, and we all need to be aware of symptoms and advocate for ourselves when necessary.
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^^^^ Well said, esp "The bottom line is that everyone needs to be vigilant, but not live in fear, and we all need to be aware if symptoms, and advocate for ourselves when necessary."
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KBeee - thanks for sharing your story...and Im sorry you are dealing with this again. Yes low risk is not the same as zero risk. Someone is going to draw the short straw in this game called Cancer - I think my chance of having BC at 42 with my risk factors (almost none other than dense breasts) was less than 1% but here I am. When people ask me about my diagnosis they are always assume I must have a family history (I dont - I am the only one going back generations of many women in our family) because that is what we have been told time and time again is the biggest and almost only risk factor (which of course it isn't). My first GP (who I promptly fired) even refused a mammogram only 8 months before I found the lump saying it was not necessary for me to be screened since "I had no family history". I have learned to let go of this because I understand now that because she was purely looking at statistics my chance of anything being found was so small that in most cases (like 99% of them!) she would have been right
interesting discussion!
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Less than 15% of breast cancer is inherited so good call rozem!!
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When looking for genetic history for your bc don't just look at the female side because males carry all the genetic abnormalities as well, so we have a 50% chance of inheriting things from either parent.
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Kbee, Iam sorry if the comparison seemed flippant, and more sorry that you had to deal with recurrence. I was simply trying to emphasize that the risk is, statistically, small
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hi everyone, I have enjoyed reading your discussions and have learnt heaps. I pick up topics that I find interesting and although I am not stage one there was content that I can relate to. I'm also no medic and new on this life long journey. So what I am hearing is once cancer is part of you there it is. It is sneaky and can lie dormant until it decides to rear its ugly head again. Regardless of stage. Statistics are just one moment in time when someone has done a count up with who ever was available to be counted.
We owe it to ourselves to be vigilant and as I am slowly getting more proactive with my treatment. As we all need to I guess as we so totally tune into our own bodies.
Today I head off to round three of chemo which I am finding pretty tough but a third dosage reduction may keep me out of hospital, off the loo and off the couch. (Not at the same time lol).
Take care
Regards Helen
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Momine, no offense taken. The reason I am so passionate about it is because a lot of stage I women get "blown off", even from their doctors because they are "just" stage I. My former oncologist, when I went to him with a lump, rolled his eyes at me, put his hands on his hips and said in a very condescending tone "You need to stop being such a worrier. If this goes from a grape to a golfball, call me, otherwise ignore these lumps because you are NOT at risk for a recurrence." He completely ignored my horrible family history...just looked at tumor statistics. I had a recurrence 2 months later (different area, but my second recurrent tumor was "hiding" right under the lump I pointed out to him). A local friend who was stage I went to her MO 6 months ago with severe pelvis pain which was worsening very quickly. Her MO told her to stop trying so hard to get a bone scan, because she is just stage I, and she needs to stop worrying. He told her to go to her family doctor. Her family doctor told her she just pulled a muscle and prescribed PT. No one even did an x-ray! A week later, she could barely walk and went to an ortho urgent care clinic. They did an MRI and bone scan and admitted her. They did surgery the next day to put rods in to hold her pelvis together because it was in pieces and looked like swiss cheese, it was so destroyed by aggressive cancer. But her oncologist thought she was making it up. We are by FAR the exception, not the rule, but it does happen and I have found (the hard way) that people who are stage I that do have symptoms have to advocate harder for appropriate assessment because even the docs consider them so low risk. That being said, no one should be calling all the time with every ache and pain demanding a scan. There's a happy balance somewhere we all need to find, but I do get (over)sensitive when people (even oncologists) downplay stage I. Stage I puts you at lower risk statistically, which is something stage I folks should be thankful for, but low risk does not equal no risk. Thankfully I now have an oncologist who is compassionate and listens to concerns. We are always on the same page about what to take seriously and what we can ignore. I hope everyone can find such a doctor.
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KBeee, that's really unfortunate that your doctor didn't take you seriously. My experience was exactly the opposite. Although I had the earliest of Stage I diagnoses, when my annual breast MRI showed an 'incidental finding' of a spot on my spine, my family doctor and my oncologist both took it very seriously and jumped into action right away. Admittedly, when I walked into my oncologist's office, not having seen him for years, he seemed a bit skeptical, but as soon as he read the MRI report, his attitude immediately changed. My risk might be very low, but it's not zero; I know that and my family doctor knows that and my oncologist knows that - in fact he was very clear in explaining that to me when we last got together (before this incident). I was actually really impressed with how the situation was handled. Fortunately it turned out to be a false alarm.
I think it's hit and miss with doctors - a good doctor will take any cancer patient seriously when there is a possible sign of progression. A bad doctor might not, but then a bad doctor probably doesn't do everything he or she should for more advanced patients either. I've seen enough posts from women who have more advanced breast cancer who've had to fight to get tests. I've even seen it happen with a family member - someone who has a different type of cancer, but is now Stage IV - and who has had to fight for tests. So I think it's the doctor as much as the Stage.
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Also, there is a balance of risk in taking chemo. Nothing is for sure so you take in the info and make your decision.
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