Will 30% of Early Stage (1-IIIA) go on to metastasize??
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Beesie, I am flattered
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Definitely a great post, Bessie. That's exactly what I got out of this "new" info as well, but you explained it better than I might have.
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Exactly, Beesie, well done..
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Girls, I do appreciate your input. I know many of you have been dealing with this disease for a while, like Barbe & Beesie and probably you have learned how to control fear and all. Barbe, glad to hear hormone therapy has worked for you :-)
It wasn't until my exchange (10/3/16) that the reality of the past 6 months hit me and sent me into a light depression. I'm trying to work long hours every day, including weekends because I don't want to think about it and I want to feel normal again (whatever normal means at this point), and reading this study sent me to my pre-mastectomy days where I was having panic attacks almost every day.
The best thing I read on Bessie's post was her signature:
"No power so effectually robs the mind of all its powers of acting and reasoning as fear." Edmund Burke
That study fueled my fears of the unknown and that's what I need to overcome.
I was hoping that being stage 1 would give me a good 10-20 years, (there's so much I would like to accomplish), but boy that study sucked the living air out of me....
Kathy, our stories are very similar. I hope we both live to be at least 70 without recurrence and metastasis. That's why I love reading success stories in this forum. I also love it every time I read members that have been hanging around here for many years. It gives me hope and it makes me smile :-)
LOVE TO YOU ALL !!
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FUBC, why are you only hoping for 10 - 20 years?
You should be planning for 40 - 50 years. And when you go, it will hopefully be due to old age and not breast cancer. Of course there are no guarantees, but then there are no guarantees about anything in life. However with your diagnosis and your Oncotype score, the odds are very much in your favor - and nothing in the latest study changed that.
Yes, some of us who are early stage will at some point develop mets. But most of us won't. The discussions in this thread tend to focus in on the worst case scenario but let's remember that if 30% of early-stagers eventually develop mets, it means that 70% don't. And for most Stage I women, the odds are even better than that. No one should bury their head in the sand or think that an early stage diagnosis means that they are home free, but neither should any of us assume the worst, since the worst is not what will happen to most of us.
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What is it they say 95% of what we worry about never comes to be. I still believe as time goes by your mind will put BC on the back burner. One day you wake up and you find you didn't think about cancer all day. Every once in a while something may happen that brings the terror back but it goes away again. The odds are with you.
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Great information but all it really tells me is that it's a crap shoot! Good luck to all navigating this disease....
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I'm wondering what my chances of getting cancer at my age would have been without a previous BC dx. How much higher are they now? I think everybody has a certain baseline risk. I think if I could get my risk down to 7% and the baseline is 5% I'd be feeling pretty good about it.
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FUBC - I read a post here early on that compared our thoughts to hearing "breast cancer radio". In the beginning it blares really loudly, every waking hour. As time passes it still plays but it is not so loud and it blends into the rest of the goings on in your life. No matter the age or stage we all hear it. We all have to take that personal journey through the fear to the point where that beast is not so scary anymore.
I've been at BCO five years now, early on it was terrifying, I even had to take a break from it for months. Now I find great comfort in knowing if there is a breakthrough in research, I'll know about it here. There is no way my personal onc could keep up with developments like the folks here do. Now I find great comfort in knowing that I can also find someone or something here to lift my spirits if I'm having a tough day.
I met with a social worker through my church on a weekly basis in those early dark days after dx. She would look at me with a quizzical grin and say, "You know how long it'll take until you feel better?", and I would think, a month? two? by the end of the summer? Then she'd say, "As long as it takes."
Gentle hugs all around. Thank you for sharing your strength everyone
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Just adding my opinion as a 2x BC'er.
FUBC I've gotten 25 years last month on my early stage bc with lumpectomy, rads and tamoxifen. Just had a clean mammo on that breast. As for for my current dx, I've made 1 year and plan on a minimum of 30 more. Yes dtad it is a crapshoot. I agree the BC radio does fade. I always thought if I had any type of recurrence, or new cancer it would have been in that original breast. Or found by a mammogram. Neither was true.
As I and others and have stated, statistics are sometimes good to have, but wherever you wind up, the percentage becomes 100% for you based on your unique qualifiers.
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Nice post Beesie and a good defence of the status quo re chances of recurrence. Of course, what lurks behind the statistics is a plethora of detail based on the factors in my earlier post (Here). I'd add that since bc is at least 10 different diseases (Reference) it would be wise for each individual here to keep up to date with survival stats and recurrence rates of their cohort.
As Valstim noted well:
"As I and others and have stated, statistics are sometimes good to have, but wherever you wind up, the percentage becomes 100% for you based on your unique qualifiers."0 -
As I posted before, when you are in the 1% with less than 6mm and become metastatic...you are 100%. Farmer Lucy, I agree about the radio. I want to turn it off rather than to listen to this music I don't really like! Lol Hope everyone that is worried about statistics is able to put it behind them during the holidays
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I don't see the need to keep up with stats. You either get it or you don't. Worrying unnecessarily or not being vigilant enough are both bad scenarios. Keeping up with new drugs and tests is being your own advocate and that is very important. No one can tell where you will fall in the stats. That's a guessing game. I'd rather deal in facts, thanks.
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Always liked the radio analogy, thanks farmerlucy. I changed the channel recently from the breast cancer station and got the prostate cancer one. Not many people get the world's two most popular cancers. And they were both aggressive versions. Talk about worry. As for treatment, it took me seven hard months to reach NED for the BC, but just seven days to get to the same state for the PC. That reinforced to me how lucky we are to live in the modern medical era. Likely we'd all be pushing up daisies in a bygone time. Anyway, now I keep in mind that saying by the great Alfred E Newman: "What me worry?"
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Ah, Traveltext, Alfred has always been one of my favourites. And he's right too!
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Traveltext- Sorry you had to deal with prostate cancer too. That sucks. Glad you're NED for both now
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The stress created from worrying about anything is a waste of time & increases our risk. I look at my journey and know the docs did all they could (even doing the Oncotype on a HERS2 + unnecessary}, I did all I could by never missing an appt. or a pill plus two elective surgeries. Now the rest is in God's hands because we all have a time that we will be called home regardless of what we do or don't do. Just my opinion & how I choose to look at the big picture. I'm not saying that this is the way everyone should be.
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When I hear a reader at this site say that they are terrified about a certain statistic or piece of research, I am confident that my onc was correct by warning me away from this type of data. Don't worry about the stats, folks. Just do your best to take care of yourselves.
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Beesie 40-50 years will be a delightful surprise but I will be grateful with whatever I get
farmerlucy, you're exactly right about the "breast cancer radio" and turning it off it's quite difficult. However I am hoping that with time, I will learn to control its volume. Thank you for sharing your experience and your social worker is right..."as long as it takes" !!
Valstim52, I know your 1st dx was 25 years ago. Believe me, I have read many of your posts. You were one of my first inspirational stories here. When I first got dx, I was obsessed with this forum. I would read the signature of everyone hoping to see survivors of at least 10 years. That's where I would find comfort and hope. I know you had your surgery in May and you had some complications. Hope all is better now and wish you have a great holiday.
Traveltext, I am so sorry to hear about your Prostate Cancer. God Bless you, you have such a great attitude !! When I first read your post,I was going to say "you're so strong", but every time I hear someone say that to me, I get annoyed because as the saying goes "You never know how strong you are until it's the only choice you have".
Thank you everyone for taking your time and sharing your wisdom. I am not trying to be a drama queen but this is the only place I feel like sharing my deep fears, anger and frustration. Many sympathize with us but no one understands us better than other members in this forum.
Have a great evening everyone !!
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The statistics ARE important to me. I developed severe cellulitis when a seroma over my sentinel node biopsy was drained ( daily IV antibiotics for two weeks after strong oral meds failed). Now in the midst of my chemo, a tiny clogged oil gland in my eyelid has resulted in another infection and one of the most painful medical treatments I've endured, and I say that as someone who had two hip replacements in two days and several Synvisc injections in my knees. When chemo concludes, I need to make a decision about the risks of radiating my G cup breast with my history of cellulitis vs. the benefit in terms of reducing the risk of a local recurrence and whether it's likely to affect overall survival. I've already developed a type of cancer affecting less than 3℅ of women so I know someone has to be the exception, but I still want to make the most well informed risk-reward decision I can.
Lyn
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VLH what is your rare cancer? Mine is Papillary and accounts for less than 2%. Risks to me are different from stats as they are directed to my situation and not all women in general. I know I'm not explaining myself well but I understand in my head what I mean.
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For example: say you told me that less than 5% of people develop radiation pneumonitis during treatment. I'd say that's a pretty good number I'm good to go! But if you told me that if I got 9,500 gys of radiation WITH a bolus AND coming up through my back as well would make me a VERY high risk for radiation pneumonitis then I might slow down and see if there was any other options. I wasn't given the risk but as a newly diagnosed stage IV I really had no choice.
So I got the rads. And I got radiation pneumonitis which will now affect me for the rest of my life. So what good did stats do for me?
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"Risks to me are different from stats because they are directed to my situation and not all women in general"
Huh? Risks are stats. If you receive a quantified risk, i.e. "You face a 7% risk to develop lymphedema if you have a SNB", that is called the "statistical risk".
Some stats are generalized and high level and apply to the population as a whole, but other stats are very specific and targeted. In your example about radiation pneumonitis, the 5% stat may be the risk level for all women with breast cancer who receive rads, but there no doubt will be other stats available that quantify the risk level at a much more specific level.
As an example, when a breast cancer patient receives an Oncotype score, it is based on a very detailed genetic assessment of her breast cancer cells. The 10-year mortality risk she receives in the report is her statistical risk, which was developed from studies that correlated other women's breast cancer genetics with their outcomes.
Barbe, if your risk to develop radiation pneumonitis was very high based on the protocol of rads that you received, and if you did in fact develop radiation pneumonitis, then it seems that the stats were right.
And even if there is only a 1% risk that someone might develop a particular condition and then you develop it, it doesn't mean that the stats were wrong. It just means that you had crappy luck and landed on the wrong side of the odds. A 1% risk doesn't mean that something isn't going to happen. It just means that it will only happen to 1 person out of 100. But someone is going to be that 1 person. Personally, if we are looking at the risk of something bad happening, I'd much rather face a 1% risk - even knowing that I could be that 1 unlucky person - than face a 25% risk. Because the chance that this bad thing will happen to me is 25 times greater with a 25% risk than with a 1% risk.
I don't think anyone should obsess about risk levels, but I think it's helpful to understand the stats, and therefore the risk levels, that are specific to our own situations. The decisions I make might be quite different in a situation where I have a 1% risk vs. a situation where I have a 25% risk. And Barbe, in your case, while you might have passed on rads with an early stage diagnosis, in your current situation the benefit from rads in terms of treating your cancer outweighs the risk from the rads, even the very high risk that you faced. That's why radiation treatment was recommended to you. Of course the way that your doctors know that the benefits outweigh the risks is because they have the stats specific to these types of situations.
And to bring the conversation back to the early stage discussion, it because of statistical evidence that doctors know that the risks from chemo outweigh the benefits for early stage women who have low Oncotype scores. And that's why it's not always a good idea to 'throw everything' at an early stage diagnosis.
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Hi Barbe 1958 I thoroughly agree with you, whats the point in worrying about statistics and survival . None of us know what side of the fence we are going to fall. My breast cancer nurse said to me that she has seen many women with high risk of recurrence who do really well and then shes seen many stage I ladies who go on to have mets. We just have to enjoy our lives and try not to spend too much time worrying about the big C. Best wishes to all Love Muriel
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I agree completely that we shouldn't worry about stats and survival. On the other hand, I do think it's very important to understand the stats related to our diagnoses so that we can make educated treatment decisions.
To my way of thinking, I'm less likely to worry if I know that my treatment decisions were based on the best data and information available at the time - the best assessment of my risks. Then, once the decisions are made, we shouldn't look back. That's in fact one of my concerns with this thread. While it's an interesting and important topic, the information discussed here seems to cause too many women to worry and to start second guessing their treatment decisions. That's not good and most of my posts in this thread have been in an effort to clarify information and remind people that the discussion here doesn't change their particular situation or the factors that went into their treatment decisions.
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gardengypsy, it's too bad your onc is warning away from statistical data. Mine is right into stats and will talk about them until the cows come home. Plus, she'll discuss anything I've read and give her opinion.
I think Beesie is right. Early stagers should understand your diagnosis and its implications, be aware of the stats concerning your cohort to get the best treatment going, then put your energy into ensuring you have the best chance to be amongst the majority who survive the disease. That's not a hard ask, and even those of us in later, but still pre-met, stages should understand that each year we stay in this state until the magic, five-year NED mark puts our long-term survival odds up there with the early stagers. At least this is according to BS and she's very well informed, and also very accommodating of a well-informed patient who is his own advocate.
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I think it depends on personality to some extent, how much info is "good for you." My mother had ovarian cancer 10 years ago, she is NED and fine, and is unlikely ever to have a problem again from that story. She still has no idea what stage her cancer was, for example. She has no interest in knowing. It works for her.
I am completely opposite. I worry more when I don't know. I prefer to have full information, and take it from there.
Each person deals with this differently, and there is no right or wrong in that.
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I do know risks are based on statiatics so figured my example would sound dumb but I get it in my head. I understand myself in my world and shouldn't confuse others.
Travel, just a word of caution. There is no magic 5 year mark. In fact I increased my yearly onc visits to every 6 months when I passed the 5 year mark. My slower growing ER+ cancer was most likely to recur after the 5 year mark. It recurred at exactly year 7.
And that may be a statistic, but to me it was a clear cut fact.
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Let's try another analogy. The stats of an athlete may be very good historically, and indicate a bright future, but it is not a guarantee of performance. It's just a forecast.
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"My slower growing ER+ cancer was most likely to recur after the 5 year mark."
This is absolutely not true. All breast cancers are most likely to recur during the first 5 years. However, ER+/PR+ cancer recurrence risk doesn't drop off quite as quickly after the 5 year mark as ER-/PR- cancer does.
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