Will 30% of Early Stage (1-IIIA) go on to metastasize??
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Nancy, I too have been told at my 5 year I'm done cured. My oncodx is 34 I am on exemestane not tamoxifen.
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Right now they are still seeing if 10 years of AIs is required. These studies are based on the studies that 10 years of Tamoxifen is not the standard care. Standard care for high risk for recurrence (node positive or tumor larger than 5cm) seems to be 10 years on AIs. At least that's what my MO has told me.
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I have also read that the risk of recurrence decreases after the 5 year mark so if you make it to 5 years without a recurrence your chances of being recurrence free at 10 years increases.
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chocomouse - my MO specifically told me that breast cancer is not one of the cancers that you can ever point to a year when the risk decreases, although there are years when preventative treatment stops - like Lago is discussing above for Als. You can predict more closely with pancreatic cancer for example & the 5 year mark is the goal there. BC is so darn random. Things may have changed and I'm always looking forward to new research.
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Minus Two the risk of recurrence does go down after 5 years and continues to go down… problem is it never seems to go down to 0% till you pass of something else or 30 years has passed.
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Thanks lago. I guess I'm super leery since I had a recurrence within 2 years. On the other hand I have a friend who had a lumpectomy 15 years ago with no problems since.
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Hi, I'm fairly new to this site. Found it when looking for more information after treatment. I thought my doctors explained a lot and I have this huge binder full of info but the more I read on here, the more I realize I don't know and haven't been told. I was biopsied Nov. 14, 2014, lumpectomy Dec. 9, 2014, radiation for 2 sessions a day for 5 days starting Jan. 5, 2015, started Arimidex Feb. 18, 2015, have IDS Stage I, Grade 1, ER/PR+, HER2-, lymph nodes 0/7, Oncotype dx 19. The doctors were very positive. My MO explained the variables that define the type of BC and recurrence/survival rates with various treatments. But the first I heard about the oncotype was when I got a call from the genomic testing facility saying my MO had ordered the test and I asked them what it was for. Forgot to ask him when I saw him last. Must write myself a note! My MO and RO make sure I get mammogram follow-ups and I am seeing them every 3 mos. and then every 6 mos. but my question is, so does recurrence always show up in the breast first or can you get mets in other places without it showing up on a mammogram first? I read on here about tumor markers and had never heard of that. (Going to ask my MO about that too.) Does everyone have that done? Maybe he's running those tests and not telling me. Some doctors don't think patients will understand or get overly concerned but I think I've presented myself as an intelligent and level-headed person so would hope he would be sharing all appropriate info with me! I read so many examples of mets, I just want to be sure my MO is running the necessary tests to catch things early.
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livinglife15 There are 2 different types of recurrences. You can have a local recurrence in the breast or lymph nodes. That is the most treatable with the best prognosis. You can distant metastasis which would mean the cancer spread to other organs. It is also treatable but not curable although you can live many years with the disease. If you are early stage typically you don't get scans. Tumor markers are unreliable so most MOs don't do them for early stage. My oncologist doesn't scan me unless I have a symptom (which I have not). I never had tumor markers done.
Ask your MO what symptoms you should watch for:
Metastasis in the bone may cause:
Severe, progressive pain
Swelling
Bones that are more easily fractured or brokenMetastasis to the brain may cause:
Persistent, progressively worsening headache or pressure to the head
Vision disturbances
Seizures
Vomiting or nausea
Behavioral changes or personality changesMetastasis to the liver may cause:
Jaundice
Itchy skin or rash
Abnormally high enzymes in the liver
Abdominal pain, appetite loss, nausea, and vomitingMetastasis to the lungs may cause:
Chronic cough or inability to get a full breath
Abnormal chest X-ray
Chest painOther nonspecific systemic symptoms of metastatic breast cancer can include fatigue, (unexplained) weight loss (10+ lbs), and poor appetite, but it's important to remember these can also be caused by medication or depression.
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Iago you know this i'm sure but mispoke- the risk is never going to go down to 0 per cent, not for anyone with breasts.
But it goes down to a "normal" woman (who never had bc or no genetic bc in family) after about 20 yrs (said my oncologist).
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Jessica - I think she did say it never seems to go down to 0% till you die of something else... Also I don't think it matters if you still have breasts or not. I had a double mastectomy with clean margins & clear nodes & clear scans and had a recurrence in lymph nodes & chest wall up under my collar bone.
Interesting about the normal woman risk though. Is that one in 8 now? I'd love to know the % of risk for "normal".
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Lago: that is a really helpful list. Thank you.
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Yeah too bad my oncologist and/or my nurse practioner never told me what to look out for!
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Mine hasn't either. They seem to think that Pagets/DCIS,,, I am "done and dusted" as my Aussie friends say. Maybe my chances of future problems are low,,,, but then, they said that about Lymphedema, and I got that, soooo,,,, I like to know stuff.
Thanks again for sharing.
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Loral - thanks for the calculator.
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Can some please have the decency to change the title of this thread already. It's scary as f*ck for newbies and erroneous as hell.
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http://www.sciencedaily.com/releases/2015/09/15092...
Significant genetic differences between breast cancers that relapse and those that do not: Better treatment
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From what I see, the TailorX study basically says oncotype under 10, no chemo, if you are in the mid level gray range (between 10 and 25), we still don't know, it is being studied, with a high oncotype range, definitely chemo, which has already been well established. And all are based on hormone positive individuals, correct? So nothing for hormone negative, and no clarification for the dreaded intermediate gray range, as far as I can tell.
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This is a direct quote from the fo!ks who made the OncotypeDX test! The good news is that there haven't been enough recurrences!👏👏👏👏👏
Without data on the ultimate outcomes of these patients, drawing a conclusion on what these discrepancies mean has been impossible. Unfortunately, the current analysis of TAILORx has not yet delivered the awaited outcomes data for the randomized intermediate RS subcohort that could help answer some of these questions.
Steve Shak, chief scientific officer of Genomic Health, told GenomeWeb that this is because there simply haven't yet been enough recurrences or other events in this subset to exclude or confirm a benefit from chemotherapy.
"The data monitoring committee advised that [the researchers] need to continue to follow those patients and that they will inform them when that [intermediate RS] analysis can be done," he said. "The understanding … is that it's taking longer because the event rates are low, which would be great news for patients."
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The title of this thread is a question, not a statement. As far as being scary, I think everyone needs to know that the possibilities of recurrence or progression is there. They need to know not so they are afraid, but simply to carry that awareness
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Exactly, Caryn. Thank you.
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I haven't checked in for quite a while. Which I suppose is a good thing, right? Out living life.
.. but I do like to stay up on latest developments and as most of us know, this is one of the best places to find the latest info and intelligent discussion.Quickly read through and was surprised to find I'm quoted somewhere out in the interwebs (and as a metster no less!) ... maybe I'll take my city out of my profile to a little more anonymous. Thank you for giving me the heads up! I still find this particular topic/discussion fascinating as I'm coming up on my 5 year mark (Nov 30th! - day of surgery) I know many people that think I will be "cured" at 5 years. I usually gently inform them that for those that are hormone positive.. the risk actually doesn't magically go down at 5 years. I thought I read somewhere that it actually increases a little after 10 years? Sometimes I don't say anything and just say "woo hoo" along with them.
I try to take care of myself. Follow standard treatment. Try to eat clean most of the time, exercise, blah blah. Still wonder if it's a bit of a crap shoot after that.As far as the title goes... I'm not changing it. As xbrnx said, it's a question - not a statement. And I wanted to draw attention to it because like kayb, I believe knowledge is power. And you have people like Nancy's doctor telling her "you had clear margins and no nodal involvement so you are cured". Sigh.
I'm off to read the Tailorx study... looks like I moved from "safe" to the "crap shoot" zone. Still don't think it would have changed my decision to ditch chemo but I would have gotten more pressure from my husband. So I'm grateful it hadn't come out yet!
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Early detection with treatment lessens the chances of progression. But the fact remains that there is still no cure for bc. We don't know which women will progress from a lesser stage to stage iv even with aggressive treatment. You can still progress even after five years of being cancer free. The general public seems to think the five year mark is an all-clear signal. Some think early detection is the same as a cure. But it's just not true.
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Susan's Garden - nice to see you. When I started on this site back in 2011, you were one of my heros. Since then I've had a recurrence - so I certainly agree - tell it like it is. Knowledge is power. We're NEVER cured - only NED - until the next time. A good advertisement for Carpe Diem.
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There also seems to be a public misconception that women who've been diagnosed with stage iv bc did "something wrong". In other words, they think the women must not have had mammograms or just have refused treatment when diagnosed with a lesser stage bc. It is a way of blaming the woman for the progression of the disease. And it's not true. There are, sadly, women who come to the stage iv boards who had treatment for lesser stage bc but at some point, progressed.
Myself, I had mammograms every year for over 10years and still was one of those unlucky 6% diagnosed with stage iv from the start. It's not because I did something wrong.
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TheDivineMrsM it's not only stage IV that people think they did something wrong. I was actually asked if I skipped my mammograms by someone when they heard how large my tumor was!
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Thanks for pointing that out, lago. It's too bad someone asked such an insensitive question to you.
Several years ago, a woman who worked in our town died from bc complications after a couple years of no evidence of disease. When I expressed my shock that she'd passed, a coworker sort of confidentially said, "well, years ago she developed an eating disorder." Yep, I took that to mean that she felt the woman with bc brought it on herself thru neglectful nutrition.
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Thanks for posting, DivineMrsM. Guilt is something I and many others here seem to struggle with. I'm sure that many, many of us feel that we are somehow to blame, even when the facts would say otherwise. It's hardly unique to cancer: my DS was just diagnosed with a common (easily treatable) problem, and we need to see a specialist. Of course it is my fault!
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Hi MinusTwo!!..and thanks for the kind words.
..Sorry to hear you had a recurrence, hope you are doing well and seizing the day!I agree with you DivineMrsM. I have so many friends that think just because they have a yearly mammogram, they are immune from dying from breast cancer. And I have had someone ask me if I breast fed?...did I take birth control pills?.. did I get my annual mammogram?...etc. Trying to find something I did "wrong" to make her feel safer. So many misconceptions.
I don't want to be a doomsdayer, but I also don't want to be naive to the fact that all of us are still at risk and there is no cure. But like MinusTwo said, great advertisement for Carpe Diem.
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Susan I so remember your reconstruction thread.
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