Will 30% of Early Stage (1-IIIA) go on to metastasize??
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Gee, I keep telling myself that I won't post here again, and then...
Come on, moth, what you are raising is a completely different issue. Don't misinterpret what I said to imply something completely different.
I said that I try to provide newbies with "rational, clear, hopefully accurate information". It means talking down someone with a new Stage I diagnosis who thinks she won't be around to see her 5 year-old child enter 1st grade. It means reassuring someone with DCIS who is desperately looking for long term survivors who had a similar diagnosis. It means explaining to someone with a 5 Oncotype score that no, she does not have a 30% risk of recurrence. It also means telling someone who thinks she can't develop mets because she had clear nodes that, no, unfortunately she can develop mets despite having clear nodes. It means ensuring that everyone understand that no matter how low their risk of mets, they do have a risk of mets, and they must remain vigilant and should never ignore any symptoms that could represent a recurrence. Do you know how many times I have posted exactly that?
I know that many doctors aren't honest with their patients. Some over-estimate risk in order to push patients into treatments; others under-estimate risk, misleading patients into thinking they are safe from recurrence. Some even do both. "Without taking the AI you are guaranteed to get a recurrence but if you take the AI you'll never have to worry again." Where in my 11,117 posts (I need to get a life!) have I ever said or even implied it's okay for any doctor to lie and/or mislead his patients? What I've actually posted about those doctors is that they shouldn't be allowed to practice.
Not wanting newbies to panic over a total population 30% risk figure doesn't mean being dishonest about the risk that they actually face. Quite the opposite, in fact.
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This is an awesome thread with awesome talk!
Beesie, I may have been clunky in my delivery but I was and am in agreement with you. A short note added by the mods, not a change but an add, would clarify things a little. I know you were not suggesting editing. Sorry that I was unclear about that. The 'writer' in me obviously can't write very well! I think it would not be difficult at all for them to do this. In fact I have seen it done in numerous other threadsI am shocked, SHOCKED by the women I talk to who seem to have a very fuzzy view of their breast cancer situation. Is it the fault of doctors? Sometimes yes, sometimes no. If you are a doctor and have before you a patient who clearly and plainly does NOT want to hear the truth, know the stats, grasp the situation, is it your job to FORCE them to look at reality? There are people who have lived their whole lives without once making acquaintance with reality. Is it your doc's job to be the guru that makes you awaken, especially when being asleep is ever so much easier and less jarring than knowing the truth and learning how to live with it? For example, my mom, when someone asks her how I"m doing snaps, she'll be fine! And the conversation is abruptly ended there. Over. Done. Even if I am sitting right there! I am not allowed to answer. There is no outcome allowed other than me being fine. Period. Of course we all know that while I appear to be fine at the moment, there is a whole lot of unknown that might be NOT fine. I don't know. I might be fine for 2 more years then suddenly not fine. We don't know. I have been a statistical anomaly once. Will I be again? We don't know. So, if a patient is happy to walk out the door thinking they are cured, should a doc grab you and alert you to the fact that, well...maybe you're not? Because I want to be honest and clear without repeating an essay to people, when they ask me how I am I say, "good. For now." Which is the truth, the whole truth and nothing but the truth. To the best of my knowledge, at this moment, I am okay, but I fully acknowledge that cancer is cancer and a slippery SOB and at any moment my bubble could burst. Yet I meet women all the time who tell me they're cured. I think, lucky you. Either lucky that it's true or lucky that you believe it. Wish I had that peace of mind. I do not.
Buttonsmach, the very first thing that was said to us on the very first day of our statistics course was "Never believe a statistic." That is the ONLY thing that has stuck with me from that course.
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Runor - I have so many acquaintances - and even friends - who don't want to look at what might come. The answer is the same as your Mom: "I'm fine". Nor do they really listen to their docs so they have no idea even what their planned surgery or treatment is, let alone their diagnosis When you ask for example if they're ER/PR positive, they don't even know what I'm talking about. Head in the sand...
I'm older than many of you. I wonder if this is partly a throw back to my parents and grandparents generation. They believed that doctor was "god" and you never questioned or asked them anything.
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Minus, I have a friend who was diagnosed and called me to talk and I was so glad I could be a listening ear for her. But when I asked her for information, she knew nothing. It turns out her situation was far more critical than she let on. But I think she had no concept. Just as you said, her approach was 'doc knows best.', which I consider an abdication of responsibility. Doc may know best and I will take his opinion into consideration, but I will gather my own information and make my own decision. In all our talks she has never talked about her recurrence risk. I think recovering from surgery, infection, a long chemo and then radiation has taken her focus for a while, and rightly so!
Sometimes I wish I had chosen ignorance as it truly is bliss! Knowing, thinking, worrying, writing wills, medical directives and getting rid of unworn jewelry and all other life junk, is tiring. Never feeling like I am truly safe, is tiring. But I never was safe. Never was! I was always subject to death. At any moment. It's just that I didn't think about it fulltime and now can't stop thinking about it (which frankly is what I think has happened to the entire planet, it has had its possible demise shoved in its face, even though the virus risk is small to most people, and they have collectively FREAKED OUT and thus laws and rules and restrictions that have nothing to do with stopping disease but with making us think we're doing something to stop death, because thinking about it is making the planet crazy!)Because I am a realist and want the truth, this thread is on my fave list. The title alone forces one to look at and consider the situation. As Beesie says the information might not help us feel better, but at least everyone here will leave with no wool over their eyes. Beesie and others try to remove the sting, provide perspective. But the truth is the truth and I am the sort who needs to know it. As everyone else here does. I am grateful.
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runor and all, if cancer diagnosees (people who are or have been diagnosed with cancer -- it might not be a word but it works here) aren't aware of their recurrence risk, it might be for any number of reasons. I thought my doctors were fantastic. I had/have care through a highly rated cancer treatment center at a major research hospital. They are (the BS, MO, RO) kind, clear, and respectful. They all answered questions I had as directly and carefully as they could. But not one of them brought up the subject of my recurrence risk, in terms of stats or any number. Now, with triple negative, I didn't have an Oncotype number to refer to. And I had, thanks to this board and info here, looked up the Predict numbers on my own. So I also never asked. Who was at fault there? Me for not asking, or them for not bringing it up?
It's easy to imagine patients not asking, not understanding, not hearing because of their fears and being overwhelmed. It's easy to imagine a team of doctors where somehow, each of them expects the other to raise the subject.
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I think recurrence risk should be discussed at outset, when deciding on treatment. IMO, otherwise it's not informed consent.
But clearly not all MOs see it that way. I think it is more often discussed more obliquely as "this treatment reduces your risk of recurrence by x%" but if they don't actually tell you the baseline risk then how are patients making these decisions? It's really baffling to me to not be presented with the reason for why a certain treatment plan is being recommended and what the anticipated, evidence-based benefit of it is.
& it should be discussed again after treatment is over, when discussing symptoms which require attention. But again, many patients report not being told what to look for or why. It makes me very frustrated.
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Interesting Mountain Mia. Who is at fault? I can't fault the docs for not emphasizing something that the patients don't want to hear. And lots of people just don't want to hear bad news. Or even hear any details. Like Runor - I want to know everything up front - but I know I am in the minority. And not to change the subject, but that is why I so appreciate the research & graphs that Beesie provides to the newbies.
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There are also folks who are completely uneducated about medical and anatomical stuff, some of whom are not capable of understanding much of the detail
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Yeah, I think it should be expressed. I guess for me, there weren't really "alternatives" presented. Again, triple negative. It was more presented as the plan. You'll have surgery, you'll have chemo, you'll have radiation. There wasn't maybe a lot of point in talking about risk reduction. For ME, I never assumed this was "cure." I always understood that the point was to kill it if possible, but that might not happen, and if it didn't, likely bad things would happen. But no one there actually said that to me.
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I agree so much with you ladies on needing clarity about our risk. I am definitely a person that needs to understand all the information. I have a sister on the other hand who chose not to ask questions about anything. She placed all the knowledge and strategy in her oncologist's hands. It has definitely worked for her as she is 22 years out from a stage 3 diagnosis (yay!). We are all so very different in how we approach our disease. I have to know the how why what if . . . .
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Sisters, if you haven’t already read Otis Hawley, MD’s book, How WE do Harm, it is a must read to understand how we all contribute to the harm of cancer education and treatment. He begins the book with a breast cancer patient who shows up with her diseased breast in a brown bag and asks how this could happen in the United States.
in the eleven years since my diagnosis, I fully understand how that happens. Likewise, I have seen the other extreme where a woman ( can I still say “woman”), shows up here on a thread and asks why Memorial Sloan Kettering is refusing to give her chemo with an OncotypeDX score of 8. In my years on this website and discussion board, I have never faced as much criticism as I had for defending MSK’s decision.So....you can also be of the opinion that even if you provide the MOST CURRENT info to a patient about the risks and rewards of treatment and explicit info about the POSSIBILITY of recurrence, or the POSSIBILITY of a NEW cancer, there will OFTEN be patients who ONLY wish to hear about their chances of being CURED. The woman I refer to was highly educated and wanted yo be CURED. Dr. Brawley devotes an entire chapter to a woman like her.
so, as a practitioner, what do you want them to do? Sit every woman down and tell them by virtue of the fact that they are a woman increases their chances of getting breast cancer and ultimately dying from it because there is no “cure”? Or shall a practitioner sit a person, female or male, down and say, “Here is a crash course in statistics and here you are if you choose treatment A, B or C and, mind you, whether you choose any of them, there will never be a 0% chance that you will be cured.” Or, perhaps, what about a practitioner sitting a person down and saying to them, “I think you will do well with the smallest amount of treatment” ....only to find the person in front of them saying, “That’s not good enough, I want to be cured so throw the kitchen sink at me, so I can tell myself and my loved ones I will be ‘cured’.”
Everyone’s personal risk is just that. It is individual. So, the takeaway of SusanGarden’s question was answered early on and often enough by sisters like Beesie. By now, anyone reading ANY thread should keep in mind that everyone’s experience is INDIVIDUAL. And if anyone hasn’t figured out that there is no such thing as a breast cancer treatment leading to 0% chance of recurrence, then good luck convincing same person that the earth’s sunrise ONLY occurs from the east0 -
I am a person who wants to know. There are people who don't want to know. Or you could say I am a person who worries where other people (the not knowers) might not worry, might be able to put it out of their heads.
It occurs to me that whether you know or don't know, does not change your outcome. What we understand or don't understand does not protect us from or make us more vulnerable to recurrence and death.
So if knowing is not a survival advantage, why bother? Be clear, I know why I bother - because there is nothing I hate more than a surprise. Being diagnosed the first time was a surprise. A VERY unpleasant one from which I really never will recover fully. I don't ever want to be caught off guard. If/when my cancer comes back I want to have braced and prepared for it in some small way and to do that I have to know it's coming. Like when you know guests are coming to visit from a great distance and they might get there at dinner time or they might not get there until late at night, you don't know, but you make damn sure you have something on hand to feed them when they do show up from their journey. You prepare. You cannot prepare if you do not know you're getting company. But preparedness is still not a cure. Being prepared does not make you safe or save your life. So... maybe the unknowers are onto something that I have failed to grasp.
Maybe knowing isn't about cancer at all but about how to conduct your life in the meantime. How to prepare or not prepare? I don't know. I wish I was the sort who could just flip my fingers and say que sera, sera. Instead I am drawn, over and over, to this thread, to see what new information comes up or what points/opinions others have to post. Because this is never off my mind. Never. I am always expecting company. It is exhausting.
Voracious, my surgeon told me that she had based her recommendations to me on what the most current science and data say about the best treatment for my personal situation. When diagnosed with cancer FEAR is your number one reaction and no fear-filled person is smart. Far from it. So I can see some panicked woman with a score of 8 on an Oncotype saying she wanted chemo. She is grabbing every raft that floats by to try and save her life. Of course it is the sworn duty of doctors to Do No Harm. And giving chemo to a person who scores 8 is most definitely doing harm! I am surprised that you were given flack over defending the choice to not give that person chemo. You'd think nothing would surprise me anymore. I don't like surprises!!0 -
And now we can hope for stats on this -- SOME DAY! Here is a 2 page article at the link. Excerpt below.
https://www.medscape.com/viewarticle/943796
Patients with breast cancer want accurate information on the risk of their cancer recurring once they have completed treatment.
"I would like to know the true stats of how many breast cancers come back no matter what the hell we do for treatment," comments a typical post on a breast cancer patient bulletin board.
But those statistics have not been available from a robust population-based source.
Now, there is hope that they will ― at last ― be collected.
A new pilot project at the National Cancer Institute (NCI) is setting out to collect that information, although the researchers say it is a "long-term goal" that will take a few years.
But it has already been a long time coming. The mother lode of all US cancer data, the NCI's Surveillance, Epidemiology, and End Results (SEER) Program, started collecting cancer data in 1973.
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Runor, you are a planner. I get that as I am also a planner. I also like to make sure I have all my ducks in row and know what to expect around every corner. But you have hit on one of the ethical questions that I and others were grappling with when I was first diagnosed. I recall being completely shocked that they didn't scan periodically (annually? every two years?) to be sure the cancer hadn't spread. I felt strongly (and still do) that the patient has a right to know as early as possible so that they can make choices about how they want to live their lives. However, medical literature at the time was of the view that it is not in the best interests of the patient - it does nothing to change the outcome (or life expectancy... that one is hard to wrap one's head around) and may do harm in terms of exposing the patient to a lot of needless worry at each and every scan. Ultimately it was about me having control - I got over it and funny thing is, despite my fervent belief that I wanted to be able to make informed choices, as stage IV I have actually done very little differently than I have over the last 20 years. Still working, still trying to manage my finances, still have the big house, etc. (Of course one of the issues is I still don't have a best before date stamped on my forehead so... ).
I have found this thread very interesting as it brings back memories of my experiences. I have a science background so definitely leaned on the side of researching and wanting to understand every aspect of my disease. I went through my pathology report with a fine tooth comb reviewing each statement (okay... that's bad, that's worse) and it did help me to prepare for my first meeting with my MO. I already knew that chemotherapy as likely to be recommended (funny - I even decided on which one thinking it was going to be rough but at least it was only three months - my MO came up with one which was even more aggressive - so much for researching) and at one point when things were going sideways in terms of my treatment due to low neutrophils I had the physician's protocol in front of me for the discussion.. Ha! It also allowed me to prepare for the long haul. I knew there was a pretty good chance that I was not done with BC based on that path report so I shed my tears at that time and moved on. And funny enough, I recall very clearly that on one of my last appointments my MO said "You are going to be just fine" (I think primarily based on my continued sense of humor through it all). As it turned out, um no... but I sure don't hold it against him. The odds were still stacked in my favor but I drew a short straw.
Sorry all, I'm rambling a bit. Ultimately I agree that women have a right to receive accurate information but as folks have pointed out, not everyone is equipped to process this information, either from an intellectual or emotional perspective. And that's okay. Should bad stats be circulating? Definitely no. But ultimately stats are just stats. They can't predict individual outcomes with any certainty.
Thanks for the lively discussion!
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Yes, stats are just stats! Unfortunately, today's medical science doesn't know much to let us know what is going on in our bodies once treatments are over or while on treatments. It seems that early-stage treatments are the same on the last 20 years: mastectomies + chemo + AI/tamoxifen or lumpectomies + radiations + AI/tamoxifen. Not much has changed for the majority of cancer types. Still, the doctors don't know the predisposition of recurrence and make us very uncomfortable. I met 4 MO before settling with one of them and what I heard, the first one told me not to worry, small cancer you are cured. The second didn't comment much. The third said let's fight it with tanks and heavy artillery, the fourth said let's do AI and knock on the wood, hopefully, you won't have a recurrence but there is no way to know if cancer cells are in the body or not, or if letrozole is working. I assume most of us early stagers are on the same boat with worries of recurrence because doctors don't know until we move from early to late-stage (knock on the wood won't happen
. I don't want to live with fear but also, I don't what to ignore it. 0 -
Sadiesservant - just tangenting off the discussion to talk a bit about early dx of mets. My little prediction is that we will see a change on this in the upcoming years because of research on oligometastatic disease and local treatment with surgery/radiation/sabr + systemic tx. We are already seeing some phase 2 trials showing significant pfs and os results for pts with oligomets (with a variety of cancers, not just breast) who are treated aggressively at outset. This could really change the discussion because then once again we'd be saying, find it early when it's way more treatable. Also, the studies that show little to no benefit are from the 90s/00s. This is an area where I think we're not practicing evidence based medicine... Both imaging and therapies have advanced considerably since then.
As for people who can't understand procedures.... this is an ongoing issue in nursing. For ex, one of the pre-op nurse's jobs is to ensure informed consent has been obtained. it's not the nurse's job to obtain it - that's physician's responsibility, but the nurse has to confirm that it has been obtained. And if during the pre-op discussion it became apparent that the pt didn't fully understand, then the nurse won't sign off and the surgeon &/or anesthesiologist has to come out and explain it again. If a pt is truly incapable of understanding, they need someone who has medical power of attorney. It's part of the medical team's job to explain things until people do understand. Patient education is a huge part of the task... I don't think there should be shortcuts there.
If people don't *want* to know.. that's trickier. I still think they can't provide informed consent without understanding their disease, prognosis and the expected risks and benefits of treatment. If someone really refused to hear anything, I think ethically a team could and should refuse to provide treatment. This would be an interesting topics for the biomedical ethics course....
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Speaking of how much patients need to know about their prognosis, I don’t think there’s one size fits all answer. Deeply personal decision and sometimes, more knowledge could lead to worse quality of life by causing unnecessary anxiety when there’s nothing to worry about yet or if there’s something to worry about, nothing can be done anyway. Some may like to be in control or think they are in control ( no offense to anyone posting on this thread, I simply don’t have time to read everything) whereas others prefer to live their lives while they can without getting on Zantac sooner than needed. Totally personal choice that doesn’t have to do with solely education.
Best to all
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runor....with regard to the sister with OncotypeDX 8 score....Beesie is my witness. It was a $hitshow here on the discussion board. First Do No Harm and blah, blah, blah, that sister had here a groundswell of support. She wanted the kitchen sink and she wanted to be cured and these other sisters tried to malign me and MSK. I wasn't having any of it. Nor Beesie.
with all of that said....I wish she would reappear here on the discussion board and tell us all how she is doing. Sometimes, I do wonder what happened to her and how she is doing. Wonder if she learned anything helpful that might benefit other folks.... The other saboteurs here on the discussion board who unknowingly made the job of the MSK team harder? I don't care to think much about them....0 -
lily...a lot has changed in the last twenty years. While practitioners don’t know who will recur and who won’t, a lot of research during the last twenty years has tried to fine tune that question. Twenty years ago researchers were first beginning to understand the use of genomics in treatment decisions. Back in the day, they knew they were over treating most patients, but they didn’t quite know whom. Today, there are a few genomic tests that are in use and are sparing countless patients grueling treatment. Likewise, many patients are rightly getting more treatment.
Hopefully there will come a day when we have better screening tools than we have now, better treatments options than we have now and hopefully one day soon, when a patient is diagnosed with breast cancer there will be a cure..
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runor...I just remembered something else regarding sister with OncotypeDX score 8. I think it took a number of days to get her to admit that a score of 8 was “low-ish.” That was as much as she would concede AND finally perceive! A score of 8 was “low-ish”, BUT she still wanted the chemo. Now....today....is there anyone here who understands how the OncotypeDX genomic test is designed and wouldn’t agree that a score of 8 is low and NOT “low-ish”? Quite frankly, I can’t recall EVER when that score was anything but LOW. And, so there are no doubts in anyone’s mind, to be crystal clear, with a score of 8 the risks of chemo out way any benefit whatsoever. I hope we can all understand and agree on that point. Sadly, that point was lost on a number of sisters....and they contributed to making the folks at MSK’s job harder than it had to be
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To play devil's advocate, is there much difference in direction of someone who wants chemo, even with a low Oncotype score, and someone who has DCIS and no genetic factors, and wants a bilateral mastectomy, primarily for risk reduction? Women do that ALL THE TIME.
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Good point, MountainMia. This discussion made me think of Sandra Lee who had Stage 0 DCIS and was all over TV telling 20 year olds they need yearly mammograms and said that her radiologist (!) told her she was "a ticking time bomb". And here we have people with invasive cancer who were told they'd be cured.
People err in all directions, it's crazy. We just need facts not false reassurance and certainly not false panic and awful-izing.
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mountain...there is a teeny, weeny, HUGE difference between a patient who chooses bmx for non invasive DCIS and a patient who would like the choice of chemo with a LOW OncotypeDX score with INVASIVE bc. With the latter, there is an expectation that a practitioner follow NUMEROUS guidelines and NOT even put chemo on the table, unless they don’t believe in FIRST DOING NO HARM.
A BMX for DCIS is a very personal decision. Very, very personal. That said, with the very public statements of Sandra Lee about why she chose BMX for DCIS, it did and still seems to me that she did a very poor job of communicating to the public about a very nuanced topic. With that said, I think journalists did a very sloppy job of reporting her news. They could have picked up the phone and spoken to a number of oncologists. Perhaps her “ticking time bomb” could have been put into perspective. IMHO, that was a lost opportunity at enlightenment0 -
I read this discussion and can't understand what's wrong with chemo for a patient with low oncotype. If a patient doesn't trust statistics and accepts all the risks, it's their life and their decision. Also, on this forum I read stories about very low Oncotype and further unpleasant findings, when women insisted on additional scans or surgeries (i.e. ALND). I am really surprised that people who definitely have reasons to advocate for themselves are treated like they are wasting doctor's time.
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MikaMika I agree with you. Stats are really good if one is planning a city and must know how many medical facilities should build. For an individual they are useless. My calculated risk of developing breast cancer at 44 was 0.8 % . I had probability of 99.2 % of not having breast cancer. Yet here I am.
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Here's what's wrong with patients who are low risk getting chemo.
Do No Harm. That's the doctor's responsibility, even when facing a bull-headed patient. This means weighing the benefits of treatment against the risks from the treatment itself. Someone with a 6% risk of metastatic recurrence might be able to reduce that risk to 4.5% by taking chemo. A 1.5% benefit. The risk of serious and/or life threatening side effects from chemo?
Chemotherapy-induced Cardiotoxicity https://www.ncbi.nlm.nih.gov/pmc/articles/PMC37497...
"Cancer treatment has improved significantly in recent years and it has been proved to increase significantly rate of cure in breast cancer, as well as to reduce recurrences. However, the applicability of these drugs is limited by the risk of cardiotoxicity (4). Cardiotoxicity is one of the most important adverse reactions of chemotherapy, leading to an important increase of morbidity and mortality (5,6). Cardiotoxicity can appear early or late in the course of the disease, and may vary from subclinical myocardial dysfunction to irreversible heart failure or even death (7). Data on the mechanism of the appearance of cardiac dysfunction during chemotherapy and the susceptibility of patients to develop cardiotoxicity are scarce (4,8). Some studies suggest that patients without known cardiovascular history may develop symptomatic heart failure in direct connection to the cumulative dose received, affirmation which has led to the use of reduced doses of chemotherapy and, therefore, to a reduction in their efficiency (9). But also under these circumstances, there is a risk of cardiotoxicity induced by chemotherapy, risk which cannot be foreseen by the cumulative dose. Moreover, the cardiac alteration is very frequently subclinical and it can appear early (during therapy), late (during the first year after therapy) or very late (more than one year after finishing therapy) (10). Consequently, better understanding of pathophysiology and early diagnosis of subclinical cardiac dysfunction in patients with breast cancer under chemotherapy, as well as the close cardiac monitoring during antineoplastic treatment is essential in order to reduce cardiotoxicity."
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Taxotere Side Effects https://www.drugwatch.com/taxotere/side-effects/"the drug carries a black box warning that includes five complications that can be severe or fatal: toxic death, low blood cell counts, liver toxicity, fluid retention and hypersensitivity reactions."
"Taxotere frequently triggers infusion reactions, according to Ho and Mackey. These typically occur within minutes or hours of receiving the chemotherapy drug. Doctors administer antihistamines and glucocorticoids before the infusion to minimize these reactions. Still, about 2 percent of patients may experience potentially life-threatening reactions."
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Beesie - interesting that the Taxotere side effects list doesn't include CIPN - chemotherapy induced peripheral neuropathy. I had Taxotere for a recurrence, so it doesn't relate to the "early" issue, however the one side effect that has been long lasting and totally changed my life is the neuropathy. Dead feet are no fun, but at least I don't have the ongoing pain for life that some have for life with their CIPN. And Carboplatin is supposedly as bad.
Hmmm - look at this - now I'm arguing the other side. Oh well, it's a complex issue and even 10 years out from my original BMX for DCIS with no further treatment (hear, hear!!) and everything I've learned since, there are always nuances. I'm not at all sorry for my original surgery. Although oncotype tests weren't on the menu then, I really wish they had been testing DCIS patients for HER2+ in early 2011.
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I don't dispute that having chemo isn't warranted for everyone. My point really was much more about the risk from extensive major surgery, including often several layers of reconstructive procedures. Because there is potential harm from BOTH chemo and from surgery, it is interesting to me that having extensive surgery REGARDLESS OF THE RISK OF RECURRENCE is totally okay with so many people. It is deemed a very very special, very very personal decision. That seems contradictory to me.
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Mountain - part of it may depend on your age. I started mammograms at age 26. I was called back for repeat mammos and Ultrasounds EVERY SINGLE TIME for over 40 years. Every two years - suspense & angst. Sorry - I was done at age 68 when a new radiologist said (no kidding) that I'd die if I didn't have surgery (well she was an idiot who needlessly caused even more angst, but that's another story) I'll never regret doing the BMX.
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Beesie,
I am not chemo advocate. But all things should be taking into consideration (age, general health, pathology), not just Oncotype. Oncotype is just a tool. What if someone made a mistake in calculations? What if statistical assumption was wrong? I also read studies that compared outcomes of Oncotype, Mammaprint and other gene-profiling tests. Why did they provide different results (high/low risk) for the same group of patients sometimes? Because they are using different models and different assumptions. Since they are still testing and developing all these tools, some MOs take them with a grain of salt. I accepted recommendations from Oncotype. But I completely understand why someone doesn't trust tests. Now it seems like Mammaprint, not Oncotype is the best test for lobular cancer that I had.
"Harm" is a very subjective term. My MO strongly suggested AI for my case, and my surgeon considers this treatment with all my SEs being toxic.
The list of possible SEs from Lupron+AI that my MO gave me before the treatment also takes several pages. And we all take the same dosage of AI regardless of BMI and other factors.
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