Will 30% of Early Stage (1-IIIA) go on to metastasize??
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What I’d like to see are studies breaking down recurrence statistics for “early-stage” by stage at diagnosis, treatments, and for ER+ Luminal A vs B. Not gonna get my shorts in a knot till those are released, and neither should any other Stage I patients. Go live your lives. I intend to.
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According to the Johns Hopkins Medicine site:
"The survival rates and prognoses for men is not as good as it is for women. Men have a 25 percent higher mortality rate than women. This is believed to be due in part to men getting diagnosed with later stage disease."
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Just to clarify, I am not suggesting that anyone get their shorts in a knot. On the contrary, Colleoni is under discussion because, it shows the hazard rates over a long follow-up period: They found that ER+ patients (like everyone else) were at greatest risk in the first 5 years, and that the hazard decreases thereafter (contrary to statements above). There is a table in the original with hazard of recurrence by 5-year intervals according to ER status (ER+ versus ER-) among various subgroups defined by number of positive axillary nodes, tumor size, grade, menopausal status or treatments (observation, chemotherapy alone, hormonal therapy +/- chemotherapy).
Unfortunately (and fortunately), long-term follow-up studies are hampered by being tied to the treatments and understanding of their time. To get 24-year follow-up, patients were randomized in years 1978 through 1985. Yet intrinsic molecular subtypes (e.g., luminal, basal, etc). were first described by Perou only in 2000. (I have no idea whether suitable archived tumor tissues from that era would still be available and/or properly consented.)
Regarding the specific hazard rates, as I noted above, with such long-term follow-up, there have since been improvements in systemic treatments and radiation therapy, so that patients diagnosed more recently may fare better. I often note that studies that reflect individual diagnosis and treatments as closely as possible may be better guides, but alas, they may not have such long-term follow-up.
BarredOwl
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In reality, I don't know what newbie isn't scared. Practically every thread you open someone is having a hard time. Text is right. The question mark is key.
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I agree with Traveltext and I don't think the thread title should be changed either. Its a good education when reading through it and the post is a question, not a statement of fact.
Bevin
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I also agree with Traveltext & Bevin & Artista. Anyone who wants to understand many of the issues about BC just has to read back through the previous posts since the answers aren't simple. I would approve of adding two more question marks at the end of the thread title to make it more obvious that this is a discussion and nothing is cast in stone. There are more questions than answers.
So I was stage -0- with DCIS and ER/PR negative. I sort of think that's early stage, right??? I had a double mastectomy. And had a recurrence within 2 years - only then the diagnosis was IDC, still ER/PR negative but now HER 2 plus. So now I'm Stage III. But when I was early stage, I read everything in this thread and several other threads trying to figure out what was best for me. Yes it takes time to read several years of posts on several threads, but I learned something with each page.
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Hi MinusTwo:
The "30%" statistic (such as it is) refers to multiple stages of invasive disease only, and does not include pure DCIS. See for example:
https://community.breastcancer.org/forum/108/topics/812929?page=27#post_4733486
BarredOwl
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Yup - I got that Barred Owl. Those us with DCIS supposedly don't even have cancer. Except when it comes back after a surgery with clear margins.
Sorry - I don't mean to be cynical but sometimes it's difficult.
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Hi:
Changing the title came up many pages back in rather memorable fashion, but the consensus then seemed to be that the title was in the form of a question:
https://community.breastcancer.org/forum/108/topics/812929?page=15#post_4503175
Many pages later, the confusion continues. I don't think that frightened individuals are that attuned to punctuation. Because there are many more lurkers than posters, these pages do not reflect the number of women actually panicked or confused by the title question. At one time, I was one of those panicked individuals. Today, there are 48 pages to slog through, not all of it accurate. Newer members may have difficulty separating the wheat from the chaff. In addition, much of the discussion does not relate to the original question. The discussion has become so wide ranging, the thread could be entitled: "Risk of distant recurrence and survival statistics (various stages), impact on treatment decisions, lifestyle factors, and other BC musings." Or something.
Anyway, I now agree that some sort of title change would be beneficial. What is the harm in providing a bit more clarity in the title, particularly if it would prevent someone from suffering moments of sheer terror (which are abundant enough)?
BarredOwl
[Edited to fix link]
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Hi MinusTwo:
I hear you. I've got a DCIS side and a Stage IA side.
BarredOwl
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I'm so glad that so many of the non-Stage I people who have been participating in this thread in the Stage I forum believe that it should remain active and the name shouldn't be changed. Nice too to see so much concern for newly diagnosed Stage I women, as well as the expectation that they slog through 48 pages of posts in order to not be misinformed.
Which leads to an expanded recommendation. I think the most appropriate action would be to:
- Rename this thread, because the "?" at the end of the title is much too subtle and not surprisingly, the significance of the "?" isn't caught by most newbies, nor do they wade through the 48 pages of posts to find the explanations as to why the title is in fact incorrect.
- Move this thread out of the Stage I forum and to a different forum. Most of the people posting and interested in continuing the 'debate' aren't Stage I anyway. Maybe the IDC forum would be a better location for this discussion (recognizing that the topic covers more than IDC) or perhaps it fits best in either the "Not Diagnosed With a Recurrence or Metastases but Concerned" or "High Risk of Recurrence or Second Breast Cancer" forum.
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I'm all for debate and interesting discussions. What I am not for is unnecessarily frightening newly diagnosed women with misleading and inaccurate information. They have enough to be scared about without presenting them with a big bold headline that is scary and flat out wrong.
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"Those us with DCIS supposedly don't even have cancer. Except when it comes back after a surgery with clear margins."
Are you comfortable commenting on what your doctors said about your case after your mastectomy? When I first started reading about breast cancer, I could not wrap my mind around the concept of DCIS and I am still having issues. Did your doctors explain that the traces of DCIS that were left in your body after the mastectomy somehow "evolved" into IDC over time or that they found invasive cells at the time of the mastectomy? Or answer C?
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aven, do you have DCIS?
While the recurrence rate after a MX for DCIS is only about 1% (for those with clear margins; the rate is higher for those with narrow or involved margins), given the number of women each year who have MXs for DCIS (probably about 20,000 every year in the U.S.), that still works out to quite a few women. So it's not unusual, unfortunately, to find women who've had a recurrence after a MX for DCIS. It's also not mysterious that DCIS cells left behind might over time evolve to become invasive cancer; that's how IDC usually develops. Of the 1% of women who develop a local recurrence after a MX for DCIS, at least 50% are diagnosed with an IDC recurrence. Usually the recurrence is found while the cancer is still localized, but in some cases the cancer is advanced by the time it's found. This is why the survival rate after an initial diagnosis of DCIS is 98% - 99%, and not 100%.
As for whether DCIS is or isn't defined as being 'cancer', I don't see how that matters. ADH isn't cancer, but approx. 20% of ADH cases continue to evolve and eventually will become either DCIS and/or IDC. While not always the case, in most cases cells change on a continuum from being totally normal to being a bit abnormal, to being highly abnormal (high risk), to becoming cancer. Most often the cell changes stop somewhere along the continuum and don't go any further, but any level of change presents the risk that the changes could continue until cancer develops. So whether one starts with ADH or DCIS or IDC, there is always a risk that a more serious condition could eventually develop.
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I was one of the stage 1 newbies who was terrified by this thread. When I dared to question the validity of the information within it I was told that breastcancer.org was perhaps not for me.
This comment to me I felt was a defensive act on behalf of the poster. I felt bullied and was told I was scared and not facing reality.
The poor reality is that some people enjoy sensationalism . It is like the 'daily mail' mentality... a horrible newspaper in the uk that thrives on misinformation , written and read by small minded reactionary individuals who get off on scaring people.
I did not log into this site for months because it had become discredited for me by this thread
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I've been participating in this conversation since the beginning and am glad to see it continues. I will say, however, that the first time I saw the title of this thread I did NOT see the question mark at the end - and I still don't. It doesn't "feel" like a question but rather an exclamation of fear about a statistic. It's also misleading, as we've pointed out over these 48 pages that the 30% refers to early-stage recurrence, not simply Stage I.
If we're going to leave this thread in the Stage I forum I'd like to recommend a small change to the title of the thread, to "Will 30% of Stage 1 bc go on to mestastasize?" which becomes a more obvious question - and leave it at that.0 -
Nancy I think the point is to get the words "stage 1" out of the title as it should read just "early stage" or even not mention stage at all but be something like "30% recurrence rate for bc?"
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Barbe, the thread is in the Stage I forum, and the original post specifically questions the statistic in relation to Stage I (in particular, "20%-30% of node-negative patients ultimately develop metastatic disease....So "node negative" would clearly mostly include Stage I. So it is saying that 20-30% of stage ONE bc patients will metastasize.") And since the general concensus seems to be no change to the title or location, I was trying to suggest a very minimal change to the title for a bit more clarification.
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Barbe, I agree with you. Removing "Stage I" from the title would be appropriate.
Let me try this again.
When this post was started, the OP did not know the answer to the question in the title. Through the 48 pages of posts, we now know that the answer is "NO, 30% of Stage I BC will not go on to metastasize". So given that, why continue to raise this as a question to newly diagnosed Stage I women? What's the purpose of that, other than to scare them?
What we also know from the 48 pages of posts is that the "30% will go on to metastasize" stat appears to be accurate when considering all early stage women, Stages I to IIIA combined. And we know that this topic, and the discussion surrounding it, has generated a lot of interest from people of all stages.
I am not suggesting deleting this discussion. Even if the thread were to be locked, the discussion and old posts would remain (and anyway, how many of you go back regularly and read all 48 pages?).
What I am suggesting is renaming the thread so that it represents an accurate statement and stat, and moving the thread to a different forum where a more general discussion, including people of all stages, is more appropriate and can take place without misinforming and frightening newly diagnosed Stage I women.
How many Stage I women have to comment and say that they believed and/or were frightened by the title of this thread before everyone agrees that a change in the title might be a good idea? How awful would it be to have to continue this discussion in a different forum under a different title? Seriously? The original thread and the original question served it's purpose. The question has been answered. It's time to move on from it and continue the discussion elsewhere.
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I agree. Good idea not to continue with raising undue fears.
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Beesie:
I agree with you Beesie, 1000%.
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Hi Beesie:
Yes, as perhaps Jack McCoy might say: Objection, your honor. Asked and answered.
I support a change in title and move to a broader forum.
BarredOwl
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I am very new to this forum and appreciate all the valuable information and reference tools you all have shared. I agree about renaming the discussion. I'm going to post some questions under the topic: early stage bc, s/p mastectomy. Apparently, according to my MO's consultation report, that is my "chief complaint."
He can't even begin to know my chief complaints...0 -
Regarding editing the title... apparently I (original poster) can't do that? I don't even see an option to edit it anymore actually. Obviously, I was able to edit the original post content before. Not sure why I can't now? I would be happy to insert some more information that refutes the original statistic.
I certainly did not intend to scare newbies with my title. I recall trying to figure out exactly how to word it since it is limited in character count. As I discuss in my original post.. I personally kept reading that statistic off and on and was hoping to find answers and was wondering if other people were too. I was interested in hearing the conversation. I still wonder what the true statistics are...and honestly, I don't think we really know right now. No one keeps track of early stagers that go on to metastasize... they only track if they are still alive. I haven't seen anything yet that shows me otherwise, and I am dumbfounded that there is no record tracking that.
Do I believe it's 30% of stage 1? Probably not. But I don't think it's as low as we are being told. I personally think that the truth is somewhere in the middle. I still run into people that think if it's not in your nodes, you're cured! If you get a mastectomy, you're cured! That woman (Holley Kitchen who has sadly since passed away) with stage IV cancer that went viral with her video (using held up cards to relay her message) admitted that she thought by removing her breasts that she had removed all the cancer. She didn't even know what metastasis meant). Granted she was Stage III, which actually makes it more puzzling that the doctors wouldn't have painted a clearer picture.
On the other hand, what good does it do to find out you have a 10% risk vs a 20% risk. Would you do anything different? If you're already following best practices medically, what more can you do? Would it make you exercise more? Eat more healthily? What difference does it make? I'm just rambling now and feel like I could go in a million different directions so I'll stop.
I'm okay with editing the title and/or moving the post. Or if the mods can let me edit it to insert some more comforting stats for the newbies I'm okay with that too.
I'm about to hit my 6 year anniversary! woo hoo! I'm off all treatment. The latest and greatest testing (BCI) said I was "high risk" and should continue for 10 years, but I declined.
So for me personally, I say "Screw you, statistics". :P
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Susan's Garden - thanks for posting. I just came back here to suggest that someone should reach out to you because you were still around - and here you are. Congrats on the 6 years.
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Thanks MinusTwo .. I still like to check in and see latest info, testing, etc to keep myself informed. I hope life is treating you well and BC is once again in your rearview mirror
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Remember too that the most dire quote in the original post was from a study completed in 2004...which means it was proposed at least a decade ago. AIs as a therapy were in their infancy. OncotypeDX was experimental and not widely available, never mind standard-of-care (at least in the U.S.). Targeted therapies for early-stage HER2+ disease have since been refined, as have chemo regimens and radiation techniques and protocols. And the article’s author (not you, SusansGarden) committed a tautology (faulty leap of logic) by saying that “node-negative...would mostly include Stage I.” Plenty of node-negative patients have tumors of 2 cm or larger, which would include Stages IIA and IIIA.
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Hi all -- please note that we as Moderators can edit the title of the thread if you wish. Please just let us know what you'd like to change it to. Thanks!
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I have no issue with changing the name so as to more accurately reflect the questioning nature of the original post. When we start a thread, we don't ponder for hours on how the thread will be interpreted by people a long time from now. We just give it a title that gives an idea what we're about to ask and then say what we want to say. I think this thread has generated a lot of good discussion and I've learned a lot from the discussion here.
Susan's Garden, Congrats on your milestone! So very exciting!
Wobbly, I am sorry you were treated that way. One problem typing is that sometimes things come across differently than we intend. And sometimes we all just have a bad day and unfortunately sometimes it get taken out in a post. I hope you'll stick around because 99.9% of the time, everyone is super supportive here. We all get the fear and we all cope with it in different ways. Anyway, glad you're back, and hope you stick around.
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SusansGarden, thank you for your input. And congratulations on 6 years!!
Mods, my suggestion would be "30% of early stage (Stages I-IIIA) will go on to metastasize?" That retains the questioning nature of the title, but applies the question more accurately to all early stage vs. just Stage I.
Can the thread also be moved to a different forum, since the topic really does encompass so many more people than just those who are Stage I?
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just curious then, what are the stats for node-positive????
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