Will 30% of Early Stage (1-IIIA) go on to metastasize??
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-2 and others interested, let's crowd check that very interesting diagram for facts. If anyone else can show the diagram to their docs and report back here with changes/corrections, I'll produce a new version.
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so you can be walking around totally fine and know know? That's scary.
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I would like what could be deemed an unnecessary scan before my surgery because I wouldn't bother with tissue expanders and reconstruction if Mets were already present. Yes, I recognize they may appear in 4 months or 4 years, but their presence now would affect next week's procedure, something I can control, while I can't control the future.
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Ionizing radiation exposure is cumulative: every CT scan, every x-ray, every radiation treatment builds up. (I wince at all the x-rays my orthopedists insisted on taking every time I pulled a muscle, broke a toe--the treatment of which is identical whether or not there's a fracture--or tore a ligament). When I was being worked up in early 2013 for unexplained dizzy spells, part of the workup was a nuclear heart scan. The elderly cardiologist who administered my treadmill EKG warned me that like him, I could end up in my 80s with leukemia--“it's no picnic," he said, “and I'd almost rather have had a heart attack." My dentist takes it so seriously that when in Nov. I was due for bite-wing x-rays he stepped into the room and told the hygienist to skip them until at least this Nov. because I was undergoing rads. The chance of a radiation-induced myeloid cancer or radiation sarcoma down the road is actually higher for someone with a small, node-negative, grade 1 or 2 ER+ breast cancer than is the chance that (s)he will have distant mets upon initial diagnosis.
Now, ultrasounds and MRIs (especially non-contrast) are non-invasive and rather than putting something (radiation) permanently into the body, they either try to bounce sound waves off (sonogram/ultrasound) an area or use magnets to measure the resistance coming from an area, which is dependent on its water content. But they don't come cheap. A diagnostic ultrasound for cancer is done by a radiologist, and there is also an investment in the equipment and overhead that the facility seeks to recoup. And an MRI machine is extremely expensive--so much so that to hold down costs (and prices billed) more hospitals are opting not to have them but instead send patients to freestanding MRI centers. Insurance--whether health, casualty, or life--is a system of weighing odds, which influence who can obtain it, how much they pay in premiums, and (based on statistical averages for insured persons similarly situated) what is covered and to what extent. That doesn't excuse insurers acting out of pure profit (heaven forbid they instead of their consumers should have to absorb increased costs of doing business), but it certainly helps explain it.
(Come to think of it, the entire supply side since the dawn of Reagan years has enjoyed a free pass when it comes to who ultimately pays for rising costs--consumers and employees, not shareholders, owners, nor executives. I remember my conservative Torts professor countering the maxim “for every injury there is a remedy" with “into each life a little rain must fall." How come the supply side always gets the biggest umbrellas and we--workers & customers--are the ones who always get wet)?
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I understand about the radiation accumulation, but I fought to get one more PET/CT last week. That's the only test I know that will show hot spots for possible cancer growth - which I do understand would have to be verified by other testing, so maybe more radiation. I was lucky this time. No evidence of disease. So now I will move forward again unless/until I get hit over the head with some horrible symptoms down the road. I'm already Stage 3. If I end up with metastases to Stage IV, knowing early won't really make a difference. You don't go backwards or cure Stage IV.
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I may be alone in this, but I do NOT believe what's declared everywhere about "no difference in outcome" when Stage IV is diagnosed. I would rather know about oligomets and have the opportunity to blast it before the disease destroys a joint or fractures a bone.
At Stage III with multiple positive nodes and skin involvement, for me, the fulcrum has moved a bit. Which is the higher risk for me--leukemia at 80 or multi-organ mets at 60?.
So many factors to weigh. No crystal balls.
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minus....glad to hear that all is well.
Elizabeth....you are right! There is no crystal ball. My point is simple. Unless a patient is symptomatic, imaging gives most of us a false sense of security. Something that excites me is how researchers are zeroing in on blood markers that are identifying progression via blood that "sees" progression BEFORE it can be identifed by imaging. For our Stage IV sisters, this is great news because they can change treatments earlier!
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VLH - That was exactly my thinking too. I asked for another scan after being told that they don't do scans unless I have symptoms but I was given one after explaining my thought process. I sure wasn't going to do a DIEP and then find out in the middle of surgery that they couldn't finish it.
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Like selizabeth, I have trouble believing there is no difference in outcome regarding when mets are discovered - it seems counterintuitive, and while I've read a couple of journal articles I still don't understand how it's possible. I had a CT scan recently in preparation for my upcoming DIEP, which incidentially discovered two lucent lesions on my L2 and L3 and two sclerotic lesions on my hip. I've been told they're "too small to worry about yet" and when I ask about treatment they tell me "symptom management." Why should I wait until my hip breaks or a vertebra fractures before someone proclaims metastatic disease? Why not treat now, while small and much easier to treat, thus prolonging my better health and QOL, instead of waiting until I need surgery and pins and rods? I just don't get it...0
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Kay, thanks for the explanation - I think it helps me understand some of this. And intellectually, I DO understand - once there's a Stage IV dx everything changes, and without symptoms we can maintain a good QOL before treatment changes some of that.
I'm currently TN, but was previously ER+, so I'm not doing any AIs or Tamoxifen. My MO won't prescribe a biphosphonate because he says I don't need it yet, and my PCP won't prescribe anything related to my cancer treatment. My MO is willing to order another CT in several months to look for progression. If, at that time he determines this is metastatic I'll ask for a biopsy; if there's ER+ anywhere, then I have more options.
The "unknowing" sometimes feels like the hardest part of this disease, whether it's waiting for an initial diagnosis (or benign finding), wondering if/when we'll progress, to even getting that diagnosis when there's evidence. I've been through that initial dx period twice now, and for some reason this possibility of mets isn't as scary - but is no less frustrating.0 -
Personally, I'd like a full body MRI once a year (no radiation), but no way the insurance companies will agree to that!
The only scan I ever have was a presurgery breast MRI, despite having a positive node. Having lost my mother to metastatic BC, I do worry a lot about mets. Like many of you, I've been told it doesn't matter when mets are discovered, but since a diagnosis of mets almost always changes the treatment plan, I'm pretty skeptical about that.
The chart showing possible symptoms is IMO not very helpful for those on hormone blockers. Mood changes= brain mets or Tamo-rage? Bone pain=bone mets or the use of either Tamoxifen or AI?
So many of the symptoms of mets are also known SEs of the drugs we take. Bah!
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Stage is very important for prognosis, and it's used as the basis of nearly all research on metastasis.
I'm happy not to have annual MRIs, CTs or PET scans. An ultrasound each year is fine by me. All the research I've read says a recurrence caught by symptoms has a similar outcome to a recurrence caught by a scan.
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I do understand the arguments, but I can't help noticing that if the mets had been caught earlier, I wouldn't have had to lose my hair to chemo. I could have started with hormone therapy instead. But since my liver was dangerously full of tumors, I had to start with chemo. I can think of something that would help find mets sooner. It is relatively inexpensive and has no radiation: More thorough questioning and exams by oncologists, even for stage 1 people! I had symptoms for a long time that I didn't recognize, and none of my doctors asked the right questions or pressed on my liver just to check it. (Finally got the diagnosis started when they sent me for an ultrasound to look for gallstones.) I hate to say anything scary, but someone had to be in that 3%. It would not have taken an expensive scan to find out sooner, just a recognition that since low risk does not mean no risk, they need to take us all seriously and be thorough with our checkups.
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Good points SP. Unfortunately when we are first diagnosed, we are often overwhelmed and quick to take what is given us without question. It is only later, as we learn more, that we realise we need to be our own advocates and follow our treatments closely, asking questions at each phase. I was diagnosed late because my doctor wasn't connecting classic BC symptoms with the male sitting before her. Now that I have been found with a BRCA1 mutation, my 43-year-old daughter is in an excellent high risk screening program, but my similarly aged son gets no public health system support.
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I find, in conversation with other early-stage friends, there are two distinct concerns we have regarding mets: prevention and discovery. It occured to me that sometimes, we seem to think they're one and the same, as though if we find mets very, very early we may be able to treat and hopefully "cure" them, thereby preventing metastatic disease. Maybe this goes back to the whole "early detection saves lives" pinkwashing we're subjected to, that if we can "early discover" mets, we'll be okay.0
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I was told that the chemo was for any cells that MAY have escaped. My BS said at post surgical follow up said "you are cancer free". Not knowing very much when diagnosed as I seemed to be in a cloud I believed them. It wasn't until after treatments that I really started to focus on reading as much info as I could here at this site to find out out any of us could be stage 4and not know it. I have joint pain and aches all over from the Letrozole and actonel. So how would one ever know until far down the road it was something else. I had no scans except MRI Before diagnosis. I was told that even though I had a node positive it was only 1 and it didn't move on. After reading on this site that many without node positive or any of the other negatives I had identified on my pathology go on to stage 4 makes me wonder is it inevitable?? Are there types of breast cancer that are more likely to progress
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thinking positive....don't want to scare anyone but this is what I don't understand. One if my best friends was diagnosed with uterine cancer last year at this time. She does not have breast cancer. She had a hysterectomy with no other treatment. Also had no scans at time of diagnosis and was staged at one. Now a year later she has stage 4 with metastasis to lymphnodes and liver. It's hard to believe it wasn't there at the time of her diagnosis. What if she was treated at the point where it might have been in her lymph nodes but not her liver? Would that have changed her present very poor diagnosis? Is all stage 4 the same? So many questions....
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I don't agree with staging related to treatment either. I was stage I and got no treatment except surgery. Now I'm stage IV. Perhaps they should have taken my rate cancer more seriously...no?
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I believe that 30% of stage I go on to Mets because we're under-treated!! I've seen WAY less stage 3 gals go on to stage IV since I've been on bco. They are treated more aggressively and thus have a better outcome! Me bitter? Maybe...
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are there any %s fo the other stages?
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Barb, I dont' understand how you had lymph node involvement and only surgery.. that seems like malpractice. If you had 2 nodes with cancer they should have defaulted to chemo in 2008, along with tamoxifen.
I'm glad I'm getting the mammaprint and Im praying I can handle Tamoxifen and won't need chemo... but I'm a 1A, with 0 nodes, no ILV, and clear margins.0 -
Barb, I agree. I don't understand how, at least, hormonal therapy wasn't part of your treatment after your initial diagnosis I hope you have a better team now.
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Yes, I hesitated to post because my stats are scary and not typical. Don't misread the 3% in my post above. That was my chance of recurring at three years, according to my oncotype score and doctor's estimate. That means 97% of women with a similar diagnosis would not be expected to recur. And most of them are off living normal lives and not posting on BCO.
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Under treatment is a big issue by itself. A recent study looking at relapse patterns between the two genders found that males have lesser survival rates after metastasis than females. One theory is that this is because males often receive less aggressive treatments after relapse. I have a friend nearly three years into treatment for Stage IV BC and he has proven that this need not be the case. With the help of an excellent medical team he has well exceeded the six months prognosis he received on relapse and is powering on with his life.
The most common BCO comment on the topic of survival is that BC is a crap shoot. So worry about statistics for various stages is counterproductive to the enjoyment of what life is before us all. Strokes and heart attacks kill and debilitate daily, while we have lots of time to run through various treatments that mean most of us will die with the disease rather than of it.
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I'm rather new to the site, but I think that I've seen this conversation started many times. My understanding of the disease is that biologists and medics know very little about it: they do not know why it occurs, how each case progresses and what drives the progression. In the absence of understanding they collect empirical evidence: this treatment works and that one does not for this particular type of case. The only way to judge the efficacy of the treatment is to run statistics, which means that they apply statistical methods that were originally developed for entities that are inherently the same (for example, same electrons or same molecules) to humans. The way it is done is to take an ensemble of the same particles under certain conditions (for example at certain temperature), and calculate the fraction of them having certain characteristic ( for example, being in a certain energy range or certain energy state). The problem with statistics applied to humans is that human beings cannot be subjects of it : each person and each case is unique. This is where hope enters. We hope that we will end on the good side of statistics despite the fact that we are already ended up on the bad side of it just by getting cancer. We need hope. Please do not deprive us of it by referring to another "authority" who may be driven by greed or just honestly mistaken, and who is too arrogant to utter a simple "I don't know". However, if someone wants to know the odds one has to do literature search and judge the quality of research , which is very difficult, but doable, and there is a number of members here that are just doing that.
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dragon.....your point about statistics and each person being unique resonates with how researchers are now focusing their attention. With the advent of genetic markers, researchers are now approaching their analysis via "N of 1." "N of 1" is precise analysis that focuses on the individual rather than groups. Genetic tests are easing the way into this new way of analyzing data. Eric Topal, MD, and others, have written books about this new way of scientific discovery. I highly recommend reading Topol's books. I LOVED reading The Creative Destruction of Medicine and The Patient Will Now See You.
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Voracious reader, I, too, a, a voracious reader, mostly non-fiction, so your book recommendations are intriguing and I plan to see if I can get them at through my library. Thanks for the suggestions, I'd never heard of them or the author
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I normally said that the statistics for recurrence are 50%. You either get a recurrence or you don't. As far as hormonals go, my surgeon had emergency heart surgery just after his surgery on me and I "fell between the cracks" as the oncologist said after I finally saw one. She said it was too late to start anything and even my surgeon had said to "save the big guns until next time". In my ignorance of newly diagnose-dom, I didn't push. Everything I learned I learned off bco and would have done things a bit differently.
Even saying that, though, I still might have recurred. When I got my Papillary Carcinoma results, there were only THREE posts on Google about it!! All about the same 83 year old woman. My surgeon even brought the page to pre-surgery and showed me (though I'd already seen it). They knew NOTHING about Papillary Carcinoma of the BREAST 8 years ago. That kind grows in other places like thyroid but it's very rare in breasts - less than 2% so they didn't know what to do with me anyway. I was assured it had been slow growing so I knew chemo wouldn't have helped. I was treated as if I had IDC.
No regrets. I had a 7.5 year run....
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I'm sorry to break it like that, but to my opinion neither biology nor medicine are sciences in the same sense as physics and chemistry are, i.e. it is not possible to build a model of a phenomenon, verify it via a series of clean and reproducible experiments, and use a theory (based on the findings) to predict the behavior of the system. Human body runs multiple very complex processes at the same time. Moreover, these processes are inherently non-linear with positive and negative feedbacks. Moreover, our bodies interact with the environment all the time (for example, we eat food and expose our bodies to pathogens). What biology and medicine do is observation and correlation between the observed phenomena. For example: cancer cells have estrogen receptors, women secrete estrogen, hence estrogen drives cancer. This is a linear model in it's beauty and simplicity. So, we block estrogen receptors in expectation that it will cure cancer. Result? The statistical decrease in the recurrences and second primaries by 30 to 40% (see my previous post on statistics). Thus I wouldn't rely on progress in biology and medicine to deliver a fast cure. Besides, almost all discoveries in medicine were incidental (examples: antibiotics, our favorite tamoxifen, etc). Imaging technologies and robotic surgery are there because of physics: semiconductor technology developed in the 1950s allowed the development of modern computers and fast data processing of high volumes of information. (Sadly, we stopped investing in applied physics research and started chasing life on other planets and Higgs bosons.) Genetics may deliver a big volume of new information, but either it can be translated into individualized medicine is not clear. After all the human genome project delivered the gene sequencing of only one individual, a male from Buffalo, NY. Molecular biology is quite disconnected from physiology. We look at what we perceive as modern science with hope, but it's not capable of delivering what we want because of its inherent flaws.
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Yep. I agree. And that's why I don't know why everyone gets hung up on stats. You've already blown the stats by being on this website in the first place, so relax and "enjoy" the ride.
As for genetics, less than 15% of breast cancers are hereditary so that's another thing I don't get when people say "how can it be when no one else in my family had breast cancer?"
I'm also surprised when people are blindsided after a mammogram shows something. Um, what do you think you were getting a mammogram to check for?
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