Will 30% of Early Stage (1-IIIA) go on to metastasize??
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Before my current situation, I was diagnosed with triple negative, which most doctors consider successfully treated even if one can't know with certainty. I am a bit bummed that I am going to be going on anti-hormonals (losing whatever perks there were associated with being triple negative) but I think on the whole, while the idea of recurring 20 years down the line is scary, 20 years is still 20 years. Hopefully treatment options will continue to improve even as current therapies hold off the beast for longer and longer periods.
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I find the discussion about the percentage of positivity to be very interesting. On my oncotype test results, it shows a cut off for consideration of ER, PR and Her 2 positivity....Although I am considered to be strongly ER+, PR- and HER2-, my PR and HER2 scores are not -0-. Does that mean that I am positive for PR and HER2 but not enough to be considered positive? I've been trying to research that with no success. Does anyone on this thread know the answer to this?
MsP
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Interesting questions. I kept hearing that no matter what percentage your ER+ they want you on an anti hormonal, but what are the actual stats? I know it's said that when you are highly positive the hormonal therapy is more effective for you. So that would imply that it would be less effective for low %. But maybe they feel it's better than nothing? I don't know why it's not the same for HER2?
I found this not necessarily scientific answer on Dr Google regarding weakly positve ER/PR and makes me wonder if this is correct. .Just like kayb's oncologist said... they need to individually weigh a treatment's potential to help vs harm. Whether it be chemotherapy or endocrine therapy.
"As a general rule, we do routinely recommend hormone therapy to women whose tumors are weakly positive Estrogen (ER) and Progesterone (PR). However, each case must be discussed and analyzed individually. The thought is that hormone therapy such asTamoxifen is very easy to take, well tolerated, and has few side effects, that the potential for help is greater than the potential for harm. However, this remains a personal decision and you should have a careful and thoughtful discussion with your oncologist."
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I can chime in here too. I did learn that the ER/PR status and percentages are influenced by the method of testing. Both my pathology reports came back strongly ER+ but the Oncotype test showed ER- and stated that I would not benefit from Tamoxifen. Needless to say I lost my mind when I read the report. My MO explained that there are different methods for testing and that the Tamoxifen studies used the same testing methods as the labs that showed me ER+. I am angry that Genomic won't release additional information that isn't included on the report. It's my path report. Release the data!
lago - I do appreciate your encouragement. And as we don't fit neatly in the box, the concern with me, once again, is not size or stage but genetic mutations. I'm going to get this wrong but something like...I don't have the ability to turn off the RAS pathways? In other words, once certain cancers begin in my body, I don't have the normal mechanisms that will shut the cancer off as many people have. I'm probably getting it wrong. But again, it's another example of how we can look at the generalized data and really wonder if it applies to each of us as individuals.
zayb - It is comforting to know that I'm not alone with not fitting neatly into a category. The way we check off boxes requires that we declare all or nothing for our stats and it's just not that clear for many of us. Honestly, I've wondered if I'm the only one and that's a scary place to be. I'm sure your head is spinning from your unexplained recurrence. I am curious as to how your recurrence was even discovered.
kayb - I now assume our treatment recommendations are based upon the standards of care for what we most closely resemble.
SusansGarden - Thank you for starting this thread. I check it every time I see a new post.
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You're welcome Warrior Woman.
I've always been a bit of a Curious George and like these kind of discussions. 0 -
Could it be that the reason ER+ cancers tend to recur (if at all) much later than less aggressive types is that there is a gene (John Smith posted on another thread) that allows the tumor to eventually become resistant to estrogen-suppressing (AI or SERM) drugs; and that if these tumors had low Oncotype scores (low vulnerability to cytotoxic agents) and HER2- status (no vulnerability to herceptin or another targeted biologic) they then proliferate unchecked?
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thanks kayb for the her2 explanation. Makes sense. Great discussion and info.
MsP
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Warrior Woman, my node was discovered by ultrasound. I had an ultrasound because I had a palpable node. The palpable node ended up being cancer free. But, in the same area another node, the cancerous one, showed up on ultrasound. It was pretty flat but long, 3 cm. It took quite a while from the time it was first seen on imaging until the time it was finally removed. I am doing chemo as recommended by MO just in case because it was in the node. But, oncotype testing doesn't work without a primary site. It is unreliable because of the lymphocytes. MO said he had an oncotype test done one time in a case similar to mine with no primary site and the score came back in the high 50s. First pathologist said it didn't look very aggressive, gave it intermediate, but where I am being treated now doesn't consider grading to be as reliable in this case. I will go on anti-hormonals after chemo.
Just curious, what is the significance of a 0 her2 score. My most recent cancer is her2 negative with a 1. With my triple negative, I was 0% er 0% PR and had aa 0 for her2.
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MsPharoah all cells have the HER component. That's what tells cells to grow. If you are HER2+ that means you have way too much of the HER protien telling your cells to grow exponentially.
Kayb I do get it. 5% is much different than 30%. I know I would be calling it quits for sure if I was only 5% given some of the issues like osteoporosis (that I now have) and a few others things.
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It is two different cancers so that is why the score is different. I was just curious about a zero score. They said a zero score is typical with triple negative. No one (either at the original place or at Penn) thinks the lymph node is related to the earlier triple negative cancer i had 6.5 years ago. They are assuming something was missed when i had dcis and a mastectomy of the right side in the right side, but essentially are treating it like a new cancer.
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yes, indeed this is a shocker as you read more and more info. the general public and we are led to believe early stage breast cancer is highly curable.. but unfortunately, not really. i did not do well with tamoxifen, but with an additional tumor presence on my left breast i am now inclined to do my best to do 10 years. the findings are now that many more re-occurances are happening from 7 years to 13-15 and the additional 5 years of tamox has reduced death and metastasis.
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MsPharoah: Just jumping on this topic and noticed you are, like me, ER+ and PR-. Is the PR- status why you had chemo, or was it tumor size, etc.? Was just reading that PR- status is considered by some to be a significant prognostic factor even for early-stage BC patients who are ER+ and node-negative. My tumor was very small -- 2mm -- and well-differentiated, no lymphovascular invasion, etc. Wondering what onc might tell me about need for chemo? Haven't yet had Oncotype test.
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Hi, girl53. I had chemo because it was recommended with an oncotype score of 24 by my onc. And when I looked at the risk reduction with chemo, I agreed. Since pr status is part of the oncotype dx scoring process, I wasn't surprised with my score. I have also read that pr status is a prognostic factor. making treatment decisions is difficult. I hope you have a low recurrence score!
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MsPharoah: Thanks for your reply. Oncotype test sounds like a great thing. If I get SNB tomorrow -- and assuming node-negative -- and then see oncologist Nov. 30 and ask him about test, will it take several weeks to get the results back? Would they want to receive this result before starting radiation and Tamoxifen/AI, etc., in case test showed chemo would be of benefit? Not sure how Oncotype results affect treatment sequencing and timing.
I was dx'd Sept. 14 (and had been dx'd with LCIS in early August). Wow, this has already seemed so long, and the procedures and waiting so very stressful. Have heard others here say that this is worst part...that it gets easier when condition details and treatment plan are nailed down. Boy do I want to get to that point.
Hope your day is good and that weather okay in Kansas. I'd like to visit there someday. I am a huge wheat fan!
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Girl53, Weather is fine here. I live in Eastern Kansas, in the Kansas City area, so not many wheat fields near here. But I like wheat too!!!
So I am not sure your situation relative to surgery. It looks like you have had a lumpectomy and are having a SNB tomorrow? Or are you having more surgery too? I'm also not sure where you live. The oncotype DX test is very common in the US, but not other countries.
The oncotype test is performed on your tumor tissue. Your surgeon or oncologist will order the tissue to be sent to Genomics for testing. I was told about this test at the first surgical consult and my surgeon arranged for the tissue to be sent right after the pathology was completed from my lumpectomy. It takes about 3 weeks to get the test results. While I was waiting, I went for my oncology and radiation consultations, but everything hinged on the oncotype DX test result. If it showed that I would benefit from chemo, then we would do chemo first, then radiation, then anti-hormonal therapy. If not, I would move on to radiation and anti-hormonal. My oncologists had me start taking Femara about 3 weeks after last chemo and that was also when I started radiation. I had a delay because the lab didn't send enough cancer tissue the first time to Genomics. My cancer was small. There was 6mm in the biopsy, but only 4mm left in the lumpectomy. It looks like your cancer is tiny too and maybe not enough to test really. I think they have to have a minimum of 2mm cancer tissue to perform the test. My insurance covered the Oncotype test, but some don't. Genomics is very good at providing you with a reduced price for the test if your insurance doesn't cover the test.
The waiting is the hardest! Stay strong, this really is the hard part. Once I had the treatment plan determined, things were better and quite frankly, I did well through all the treatments. Yes, I lost my hair, but it really wasn't great hair to begin with and I was tired and didn't feel well some days, but I made it and so will you!
Hugs, MsP
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" "As mentioned earlier, roughly 20% to 40% of patients with ER+ breast cancer eventually develop distant metastases and half of these events occur 5 years or later after diagnosis of the primary tumor.")"
I know my tumour could have diagnosed sooner than it was. I had symptoms with pain and such months before maybe even longer but chalked it up to peri menopausal/meno since I was pretty close to when my mom stopped- and I wrongly thought bc is highest in fam with history. So this 5 years or later after dx of the primary tumour thing is not really accurate as for all I know if I would have gone in a year or more earlier, it would have been diagnosed much sooner and the tumour would have been smaller than 7 cm. Interesting thread though.
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thanks im with you... we need to get the word out... why do they want to hide this info is unimaginable to me. I meant some mets ladies the day before I went to Onco. He jsut asked me waht I thought about Chemo for stage 1. I said when do we start Chemo. He was shocked . But I was not ready to take the chance on Mets. I bet most women would get chemo if they really knew the truth
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I don't think my oncologist lied to me. She stated that with treatment, with my diagnosis and age, my risk for recurrence in the first 10 years was 14%. Now that I'm coming up on 5 years on ESD she wants me to continue for another 5 years even though no information regarding 10 years on AIs is out yet. She considers me high risk due to tumor size even though I had no node involvement.
My MO seemed to be trying to convince me to do chemo at my 1st meeting. After my research it was a no brainer for me. My concern was 5 years of AIs! A few months of chemo I knew I could do but 5 years on a drug! But here I am just months away from 5 years (did switch from Anastrozole to Exemestane) and now considering continueing.
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What I think is unfortunate is the tendency to think of chemo as being strongly protective just because it is so toxic. It is confusing, not simple. Of the group that recurs, what proportion recurs despite chemo?
In using the various predictors for my own situation, it wasn't until after I did chemo that I realized that the protective effect of chemo only would last approximately 5 years. I was totally angry that no one had explained that to me, since the odds of my recurrence were almost nil within 5 years. Why would I want to take on all the problems involved with chemo for basically no benefit to me? I could easily see that from the curves of the predictors.
So, yes, one can think of the percentage who recur and throw chemo at it, but depending on one's individual risk, it doesn't necessarily provide any clear benefit or lasting benefit.
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Agreed AlaskaAngel, that's why oncotype tests and genome testing to base treatment on the individual tumor is such an important development.
My MO told me that just a couple years prior to my diagnosis I would have been recommended chemo hands down due to my age, size of tumor and grade (my biopsy pathology was grade 3, surgery changed it to grade 2). I thought he was pretty straight with me and did tell me that my greatest risk for recurrence would be more likely 5+ years down the road.
Hadn't heard that about chemo only "lasting" 5 years. It seems to be always explained that chemo is "killing any rogue cells hanging around" so that they don't metastasize. But obviously it doesn't kill them ALL since there are plenty of people who do metastasize after chemo. Plus chemo doesn't kill all cancer cells in cancer that has already metastisized ...just "holds it at bay". I still always wonder if the majority of the BC cases that metastisize were destined to do that from the beginning? With chemo and AI's just holding it back awhile - some getting years, others decades? Interesting to me.
Can't believe it's been five years Lago! Seems like just yesterday and forever at the same time. I see you are still debating the 10 year AI decision. That's a tough one. I decided to stop at 5 years (actually ended up stopping a little earlier). Hopefully the crap shoot odds are in our favor!
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I'll be deciding on what maintenance to be doing after rads coming up in a couple months. It seems from reading people's posts that folks who aren't experiencing bad side effects from Tamox will go 10 years on it. AI though even if there aren't any bad side effects you want to stop at 5 year? Or am I not getting this right? I assume the only reason for stopping before 10 years is harsh side effects isn't worth it?
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Chemo only works on fast growing active cells. I'm thinking that some of those cells might not be as active in the 1st 5 years. That's where hormone suppression therapy comes in. For those that aren't hormone positive, their risk goes down considerable after year 3-5. They tend to recur early.
Chemo isn't 100% effective but I do believe that it did get rid of all my active fast growing stuff.
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One hypothesis is that some cancer cells may hide out as cancer stem cells, dormant rather than actively dividing and therefore not touched by the chemo, and they activate later.
NIH article "Are Stem Cells Involved in Cancer?"
http://stemcells.nih.gov/info/Regenerative_Medicin...
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So, to summarise, unless a cure is found, we'll all die with the disease and varying percentages of us will die of the disease. Most of the discussion here centers around what percentage odds we individually have of developing mets and therefore entering Stage IV. With so many variables to consider, I'd suggest taking all these odds with a grain of salt. As the saying goes, there are lies, damned lies, and there are statistics. Cheers to us all.
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Here is a lie, a damned lie, a statistic:
Stage 1: 5-year survival rate 100%
Oh hooray. I'm a five-year "survivor" this spring. Rah, rah, rah. Where is the statistic that shows the people like me who go from stage 1 to metastatic during those five years of surviving and will most likely die an early death? Those statistics are not collected! I'm always stage 1. Without those statistics, how will we get the funding required to find better treatments and maybe a cure? For all of us?
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I based my comments above on statements such as the one below. But I have been alerted that there are some statistics on stage, recurrence, and survival beyond five years, at least in the form of studies. Maybe it is the case that while there are studies out there, the US Government entities like NCI and SEER do not collect and publish this data? Does anyone know?
From mbcalliance.org "An ultimate goal of the Alliance is to have recurrences of metastatic breast cancer tracked as part of the standard operation of cancer registries and SEER."
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I am ER/PR negative so no ongoing hormone treatment. Recurrence was at 2 years - after BMX. Neoadjuvent chemo for recurrence did not provide pCR. Sorry, I just can't trust much of what any studies say anymore. Not to say that I'm depressed or have stopped living. Just sayin'.... even the statistics are questionable since we're every one a different case.
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Hi ShetlandPony:
The August 2015 MedScape article discussed earlier in this thread has some info about SEER. The article can be found by googling the title:
The Mystery of a Common Breast Cancer Statistic
Subject to the accuracy and completeness of that source, it states:
"Not able to locate a strong source for the 30% statistic, Medscape Medical News turned to America's two most prominent cancer organizations: the National Cancer Institute (NCI) and the American Cancer Society (ACS).
The NCI was no help. According to an email from the NCI press office, the institute does no[t] collect national data on progression from early-stage to late-stage breast cancer.
"What we don't count, we can't plan for," metastatic breast cancer advocate Musa Mayer has said in the past about this NCI omission.
The Surveillance, Epidemiology, and End Results (SEER) program of the NCI records only incidence, initial treatment, and mortality data. And most breast cancers do not present as metastatic.
"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."
I don't know if this is still true, but if so, it seems like poor policy.
BarredOwl
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AlaskaAngel, I believe chemo to be most effective on fast growing cells, it will knock out a boat load. But it might not be as effective on slower growing or chemo resistant cells. I don't believe it would ever get all cancer cells. Best solution is to trigger immune system to recognise the bad cells. I hope we are getting closer to a real cure.
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Shetland, don't get me started on overall survival rates versus distant recurrence rates. And coming from a different discipline than medicine, I'm always surprised at the lack of detailed statistics that we have on breast cancer. Why are so many stats still based on stage alone? Stage is just one part of the overall picture for a cancer patient.
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