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!!

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!

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....

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....

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

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.

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."

.

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."

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.

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.

MikaMika, I take Oncotype results with a grain of salt. Well, a pound of salt, actually. Do a search on this site with my name and "Oncotype". I was responding to specific comments in several posts. Because an Oncotype score had been referenced, I used an Oncotype score as an example. Nothing more.

My very simple post on one very specific point has been taken to imply all sorts of things that I was in no way saying, implying, nor believe. Counter arguments have been made against points I never made, and I in fact agree with the counter arguments. It's become exhausting in this thread to constantly have to explain what I was not saying. So I've deleted my post. I'd decided a couple of days ago that I would be wise to stop posting in this thread. I should have stuck to my guns on that one.

MinusTwo, I get what you're saying. Having a lifetime of problems is a very good reason, IMO, to have BMX. I think there are many women who do come to this board who haven't experienced that, yet end up opting for the whole go-round of surgeries.

My point is not that it is a bad idea for them to do so (although I think it is, for some reasons, for many of them.) My point is that we have conflicting opinions about what the costs and benefits of various treatments are, and what makes it "worth it" for some and not for others. It is interesting and confusing, and something that would be easier to discuss out loud, rather than in this limited format.

Beesie, Beesie, Beesie! Don't tire yourself out on this thread....there will always be another thread that will command your attention! And it will also demand that readers follow your attention!

MountainMia, I totally see what you're saying.

The fact that evidence says mastectomy doesn't prevent metastatic recurrence seems to always get lost in the mx vs. lumpectomy+rads discussions; why should we trust the surgery any more than the systemic treatments to keep us alive? The evidence tells us we shouldn't. But we tell women to go with their gut on this..but on chemo decisions we're more likely to support what the MO/treatment guidelines recommend. (by 'we' I mean generic consensus on the msg board...)

(I understand the *other* reasons a pt might choose a mx ... but when comparing to chemo decisions the underlying purpose of the treatment is the same: to preserve life so on that basis the recommendations should be similarly weighted).

It's an interesting distinction.

Thanks to all of you for your thoughtful comments. Again, I posed the questions in a "devil's advocate" manner, and it's been very interesting to read through responses. I don't think I have a more solid opinion on a "right" answer! But it's a pretty complicated question, and each person's own circumstances mean there will never be a single answer, even for the individual.