Will 30% of Early Stage (1-IIIA) go on to metastasize??
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Yes, my BS said 1B and my MO said IIA... Seem to be the same thing??0 -
Dogsandjogs - I had 3 taken because all 3 lit up. My mom had a mastectomy (she was Stage 1) 6 weeks before I was diagnosed, and they only took one node .... it was the only one that lit up. I think it's just random variation in anatomy that determines it.0 -
Thanks, that makes sense!0 -
Interesting discussion. My BS called me 1c based on the size of my tumor, 1.5cm. Nothing in my nodes. Two nodes lit up. When I asked why he took so many, he said they were clustered close to the other two nodes and came out together.0 -
Dogsandjogs I had 4 on the right because 4 lit up. (Otherside was level one so 10 were taken). It can also be because they are clumped together and hard to get just one. Good for you for only having one light up.0 -
doxie, according to TNM staging, your tumor, being 1.5cm, is T1c. Your stage, being node negative, is Stage IA. That may not be how your doctor explained it, but that's what the official staging guidelines would say.0 -
Hi SusansGarden:
I thought you might be interested in this recent Medscape article about the 30% statistic, even moreso because it quotes a line from your post above:
http://www.medscape.com/viewarticle/849644
Or you can just google Medscape Susansgarden.
BarredOwl
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or try this: Medscape Medical News > Oncology
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Hmmmm, they used "death certificates" to determine the cause of death for these studies. The cause of death on my mom's death certificate was incorrect. She did not have cancer& cancer was not the listed cause. I just don't think doctors put much effort into filling out that form. It's often a PCP or a physician filling in for the PCP that signs off on the form. Not the oncologist. I guess we should have had her cause of death corrected. My thought at the time was "does it really matter?, she's still gone".
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coraleliz love your avatar
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Yes and with my parents, it was we the children who filled in the cause of death at the funeral home. That gets shipped to the state. I don't recall seeing a doctor needing to sign the official death certificates issued. I wish I could open that link, it requires you to join Medscape to read it?
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If you google the title of the article that lago posted above, you can access it.
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Even in this discussion they are lumping stage 1 and 2 together -- and even within those groupings there can be differences in lymph node status -- I'm officially stage 2, because of the tumor size, but no nodal involvement -- and many other stage 2 people have node involvement, as do some stage 1 with tiny tumors, I think (?), and though rare, some stage 3 with very large tumors also can be node negative. Everything I've read suggests recurrence risk is a complex interplay of node status, tumor size, gene expression (as measured in things like Oncotype tests) and luck.As another note on the death certificate stats, my mom died in the early 90s after 6-7 yrs from breast cancer dx (node positive at dx) but the certificate says cause of death was congestive heart failure (from the adriamycin being used to treat her mets in her bones), so in the survey scheme noted she wouldn't have been counted as bc
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Loji I too stage IIB with large tumor and no nodes. Tumors over 5CM like mine are considered high risk for recurrence regardless of node status… although positive node status would put me at higher risk and would be stage IIIA instead.
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Hi Bevin:
I registered for MedScape, which is free. I also got the app for iPad. The articles are nicely formatted, you can save articles of interest to a "file cabinet", it has search functions for its content, general sections and sections for other specific medical areas, including Oncology. Best of all, within the app, you can often access the original content cited.
BarredOwl
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First off, I am deeply bothered by the use of Susan's handle and post in this article. Although I'm well aware this is a public forum, the intimate discussions on BCO warrant better discretion.
With that said, I'm glad the statistic is being examined. Since the start of this thread the numbers have haunted me. So to be clear the article states the ACS determined that "28% of the women who died of breast cancer during that time period had localized disease at diagnosis." There is also mention that the numbers may have improved with better treatment in recent years. What exactly are they referring to in terms of stages when they say "localized disease"?
I would love to see some follow-up to give more precise and current stats. Yes, I realize we're all individuals but I'm always looking to find data to comfort myself and that is often difficult to do.
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Hi WarriorWoman:
I hope you did not think that I was endorsing the use of the quote or handle. Journalistic standards aside, I wondered if Susan personally would be bothered or not, and felt she should know about it. Which is why I searched BC.org for the post and alerted her to the article and quote here.
I wigged out when I first saw that statistic quoted in various places. From the article and discussion here, the number seems to continue to have some problems, for example originating from the quality of the database and from covering years with possibly evolving diagnostic and treatment standards. By glomming stages together, it is a composite and seems less informative for the individual. At the same time, as a composite, I am saddened that the numbers are not better and hope further analysis and treatment improvements will make it go down for all.
BarredOwl
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Dear Barred Owl:
Thanks for the information on MedScape. I will look into it.
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BarredOwl - I did not misread you post. In no way was I of the impression that you favored using the names or comments of women here for publication. I 100% agree with you.
I keep looking at the statement - "28% of the women who died of breast cancer during that time period had localized disease at diagnosis." It doesn't say that 28% of early stage cancers metastasize. Two very different things. The published statement means that of the women who die of BC, 28% started out at a stage other than stage IV. But perhaps that is not what the author intended to say. The article also states, "The cancer registry does not track recurrence, which is how the majority of people are thrust into the metastatic breast cancer ranks," according to the MBCN website, which has repeatedly criticized the limited statistical approach of the NCI and its SEER program. The two statements do not fit together and leave me still with too many questions.
When I was diagnosed my cousin comforted me by saying that nobody dies from Stage 1. That thought worked well for a short time until I came to better understand breast cancer.
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Hi WarriorWoman:
Thanks!
I'm not sure I understand it either! I think the MBCN comment is about de-identified data in the SEER database (can't be linked to a particular patient). It appears that ACS signed an agreement which gave them access to additional information present in the SEER database, probably under which ACS undertook to hold any identifying information that they received in strict confidence. This is just a guess (I could be totally wrong): with that special access, ACS was able to correlate publicly available death certificates to particular patient data in SEER and determine that "28% of the women who died of breast cancer during that time period had localized disease at diagnosis." Also, ACS looked at "12 health districts" -- I don't know how representative or comprehensive that is.
BarredOwl
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I have to note, I just completed participating in a study by UCLA in conjunction with NIC. They only wanted answers related to the "latest" cancer. So no matter that I had DCIS & BMX, and then a recurrence to IDC in the nodes, the DCIS was not "relevant" to their study. I have to say I did argue w/the validity of their conclusions if full disclosure/progression wasn't taken into consideration.
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WarriorWoman:
I wonder since BC.org posts are searchable in Google, and often appear on top, it is possible that the author of the Medscape article was influenced by Susan's rather scientific post. Perhaps her effort to track the source/basis for the number may have even inspired his own initial or continued efforts to track its origin. Seen in that light, the author may have felt that attribution was appropriate (just saying what he may have thought).
BarredOwl
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BarredOwl,, thank you. I registered for Medscape. interesting articlce.
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BarredOwl - That's fair enough. However, she could have just as easily requested permission. When I post anything on here, I am balancing in my mind my desire to connect and communicate with the women on BCO with my desire for privacy. Although ridiculously corny, Warrior Woman masks my identity.
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Stage 1 can mean anything from a 2mm cancer ER+ER+HER- with different stats to a 1.9 cm cancer ER-PR-Her- and different stats within those boundaries. A lot of differences in Ki67, OncotypeDX, genetic profiling, circulating tumour cells etc. for that statement to actually mean anything. It doesn't really mean anything actually. Too many factors involved and not sourced...ie....ignore it.
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I had my 6-month follow-up with my MO today. I had been seeing a phenomenal NP who had worked in oncology for many years. She was great about explaining my risks, potential outcomes, allaying my fears of recurrence, and basically validating my experience. She recently moved on to another position 😕 and do today I met my new NP.
She's is very young, and very nice - and completely discounted my entire cancer experience. She told me that the Oncotype score and Ki-67 "don't really mean anything, they're just telling us about your cancer. But your margins were clear and your nodes negative so you don't have any cancer in your body to come back. So when you hit your five-year mark next year, we'll say you're cured."
"So," I said, "I don't take Tamoxifen...?" And her reply was that that was okay, my risk didn't increase without it.
i am completely floored, to say the least. None of this is what I'd been lead to believe from my previous NP or doctor. I did not think we were suddenly safe at 5 years. I'm just...so confused...0 -
Latest protocols say 10 years of Tamoxifen. That is what my MO is having me do.
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Nancy, that doesn't sound right to me. Have you completed 5 yrs of tamoxifen? Sjacobs is right that new protocols are suggesting 10 yrs for some women. If clear margins and nodes were a guarantee there was no cancer left anywhere, well, that would be great, but it's no guarantee and some people do recur after 5 yrs, unfortunately. The oncotype score gives recurrence risk assuming 5 yrs of tamoxifen. I would get a second opinion from a medical oncologist on any anti-hormonal treatment or stopping0 -
Hi Nancy:
Her understanding is not the same as mine either. I agree with Lojo. I would not rely on her advice for an assessment regarding your personal risk or the possible reductions that could be achieved by continuing endocrine therapy (e.g., tamoxifen).
For example, a recent study on T1a,b N0 M0 tumors found an excellent prognosis; however, distant relapses do occur in T1b patients:
Vaz-Luis: http://jco.ascopubs.org/content/32/20/2142.long
The web site for Oncotype DX indicates that it does provide prognostic information about distant recurrence risk in node negative patients (as a group):
http://breast-cancer.oncotypedx.com/en-US/Professi...
Please do not make any decisions based on her advice, and instead seek the advice of a qualified MO regarding your treatment.
BarredOwl
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Tamox or not, Ki67 or not - it's my understanding that with breast cancer you can NEVER say cured. There is no 5 year rule like pancreatic cancer when it's safe to assume you are cured if you make it that long. With breast cancer, the best you can ever say is NED - no evidence of disease. Barred Owl is right. Get another opinion, maybe from a more 'seasoned' MO.
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