Dr. Brawley: How we do harm

@vr:



I'll do the smart thing and take your word for it regarding Dr. Brawley at least until I meet him or read him.



All I "know" of him is 2nd hand representations of him in this thread. Not a great basis for a strong personal opinion of a person. So I don't have one.



But now you're peaking my interest about the man.



I still have the same issue with people calling out "overtreatment!" when there is so much those same persons can only assume they know about what treatment a specific cancer patient needs/ doesn't need because it's SO unpredictable still. IMO, we just don't know enough to make bold statements about overtreatment in specific cases. JMO.



If Dr. Brawley doesn't do this, good for him.



Thanks for the information.



God bless.

Violet... I said what happened. She didn't have time off from work, she had little money to miss work, she was under insured and ignorant about how to go about getting her lump checked. Benign neglect...until her breast fell off. We should all step back and ask ourselves how this could have ever happened and what does this say about each of our own complicity that it happened in The United States.

Colt, I hesitate to get into this but I really have to comment about your statements about over-treatment.  You say "I get extremely uncomfortable with what I perceive as overconfidence by doctors who do not understand breast cancers near well enough to be so outraged that people are being overtreated."  From that statement it appears to me that you do not understand the issue and implications of over-treatment near well enough to be so outraged that doctors are making an issue about over-treatment.

A diagnosis of breast cancer presents patients with a number of risks. There is the risk of local recurrence.  There is the risk of a new breast cancer.  And most serious of all, there is the risk of mets and eventually dying of the disease. 

At this point, there is nothing that can be done to completely eliminate these risks.  But we have treatments that can reduce all of those risks.  The problem is that every single one of those treatments comes with a whole other set of risks.  There's the risk of short term side effects, which can range from uncomfortable to life-threatening. There is the risk of long term side effects, which can be minor or can significantly impact the rest of one's life.  And most serious of all, there is risk of serious illness and eventually dying from a condition that develops as a result of the treatment.

If someone only thinks about the risks from breast cancer and is willing to do anything to reduce those risks to the lowest possible level, then there is no such thing as over-treatment.  But a woman's long-term health and survival is about more than her breasts. So in thinking about the overall health of the woman, over-treatment can become a significant concern.  

"How can anyone vilify doctors for erring on the side of treatment?"  Well, you tell me.  Does it make sense to offer a patient a treatment that will reduce her breast cancer recurrence risk by 1% but at the same time will increase her risk of other serious diseases (and possibly dying from one of those diseases) by 2%?  Does it make sense to treat a very low risk non-life threatening pre-invasive cancer with treatments that have significant side effects and even a small risk of death? I spend most of my time in the DCIS and Stage I worlds, and I see this sort of thing all the time. We may be a long way from fully understanding breast cancer, but we do understand enough to be able in many cases to assess the benefits vs. risks of a treatment, specifically as it relates to the individual patient and her diagnosis. 

Now, having said all that, I can turn around and make an even more compelling argument about why under-treatment is worse than over-treatment.  But that's the point.  Both over-treatment and under-treatment are bad for a woman's health. You're only seeing half the picture if you only rail against one.

And, to get back to the earlier discussions, the challenge for the medical community is to better understand the genetic make-up of breast cancer so that the appropriate treatments can be made available to each patient.

Dr. Brawley discusses over and under treatment in his book. In fact, in eloquently explaining the drawbacks of both, we then can understand better the title of his book, "How We Do Harm." The "We" is not just the physicians, but EVERYONE who has a pulse!

@Beesie:

What I'm trying to say is that without KNOWING who's safe with which treatments, that nobody should be outraged about overtreatment.



We can all agree that the concept of overtreatment is bad, but actually getting outraged that it happens is unwarranted UNTIL we get to a point where we KNOW who's actually SAFE with what treatment(s).



There's no problem with weighing risks as we understand them-----we all have had to make treatment decisions based on the limited knowledge we have....BUT people shouldn't be OUTRAGED at what they THINK might be cases of overtreatment-----because those people really don't KNOW.



None of us do.



I'm not saying everyone throw the kitchen sink at everything.



I'm saying nobody get outraged or judge if somebody DOES and don't act like you KNOW for certsin someone doesn't need a treatment

when BC is still so unpredictable.



I don't like when people act like they KNOW. To the point where they get up in arms about people being overtreated. They DON'T know.



That's the problem.



I also don't want anybody overselling how well BC is being treated or overselling how much they know about BC.



We are so lacking in these areas that I hate people pretending that BC is under control.



No wonder why the public is so oblivious, ill-informed and cavalier.



I just don't want people overselling what they KNOW.



Admit you're guessing.



Admit there's a huge problem with that in the 21st century.



That's where I'm coming from.

Please, folks...



I understand nothing is guaranteed. I understand there are risks and benefits to everything. But there are degrees of uncertainty and we know SO freaking little about BC. There are levels of consequences when you know so little about something----and act like you know more than you do. With BC, the stakes are as high as they get.



My wife had to weigh risks and benefits of treatments.



I understand.



Doctors SHOULD be humbled by what they don't know about BC.



But sometimes they don't really seem to be.



I am all for weighing risks and benefits in individual cases, YES, of course!



But you see/ read doctors who go further and start exclaiming that larger GROUPS of women don't need this or that.



Don't talk about women. Talk about WOMAN. One. Individual.



There are doctors who said that women don't need yearly mammograms until they're 50.



That suggests to the public that they don't need to worry about BC until they're 50.



We can argue the accuracy of mammograms, but to say you don't annual ones until you're 50 to all women?



I'd rather see doctors say to an individual woman "we recommend this based on results for a cohort of women who are NOT you" ...."you are an individual and not a statistic, so we really do not KNOW what we can safely tell you to do with any guarantee".... "but odds are----and here are the odds based on results for a sample of women who are not you----you don't need this/ do need that"...etc.



I'm turned off by 1 doctor who makes it his business to say that another doctor is overtreating his patients, without really KNOWING those ladies' cases.



And then even when they DO know the case (as much as our lacking bank of BC knowledge currently allows), what do they still actually KNOW?



For everyone who has/had good docs, GREAT !



But there's docs out there railing against other docs for overtreatment of cases that they don't even know about.



Again, I am against overtreatment.



I am also against docs claiming other docs are OVERTREATING their cases without knowing those individuals themselves.



I am against claiming overtreatment when the knowledge is so lacking.



Don't overstate what you know.



I don't feel the need to explain this anymore. Either I cannot explain it clearly enough, or certain parties just cannot see my point/ don't care to see my point, but would rather use a broken off piece of my explanation as a springboard for their agenda and then they pontificate on. I'm certain I do the same at times. It's okay.



No hard feelings. But I'm done. Those who understand me on this don't need anymore. Those who don't or don't want to understand---there is no more I can do to improve the situation. So I'm leaving it alone. And I hold no animosity and thank you all for the discussion.

VR, great post!

Colt, you are continuing to only look at half of the picture.  What I'm interpreting your comments to mean is that until there is a guarantee that the cancer can't come back and the treatment really isn't needed, no treatment should be considered over-treatment.  It's an individual decision and no one can judge what is over-treatment to someone else. The problem with that argument is that you continue to only look at the risks from the cancer; you are not looking at the risks from the treatment.  And you are not acknowledging that while there is a lot that we don't know, there is a lot that we do know. Someone can make an educated and informed assessment that what was done in a particular case is over-treatment.

It's absolutely true that today we can't know for certain who needs a treatment and who doesn't.  But it's also absolutely true that we don't know who will suffer from the side effects of the treatments and who won't.  There are no guarantees on either side.  What we do know is what the odds are that someone might benefit from a treatment, and what the odds are that someone might suffer side effects. We have this information gathered from groups, and it can be adjusted and applied to the individual.  If the odds favor the benefits of the treatment, then the treatment should be recommended.  But if the odds suggest that the potential risks from the treatment outweigh the potential benefits, then the way I see it, it is irresponsible of a doctor to recommend that treatment. A doctor should be considering the over-all health of the patient, not just her risks from the breast cancer. This is exactly why you see many doctors refuse to prescribe chemo to patients who have very low Oncotype scores.

Let me give you one example:  Tamoxifen being prescribed to someone who's had a BMX for a high risk condition (ADH, ALH, LCIS) or DCIS (or frankly, even DCIS-Mi), where the patient has no significant risk factors (not BRCA positive, no extensive family history of BC) and where the surgical margins were wide and clear.  In this situation:

- Approx. 1% - 2% of women will suffer a recurrence or develop a new primary breast cancer in the small amount of breast tissue that remains after the BMX.  The recurrence or new primary will be a pre-invasive cancer (DCIS) about 35% - 50% of the time and be IDC (i.e potentially life-threatening) approx. 50% - 65% of the time.

- Taking Tamoxifen for 5 years can reduce this breast cancer risk by at most 50%.  This means that the maximum benefit from Tamox is a 1% risk reduction, recognizing that a portion of that 1% would have been a pre-invasive, non-life threatening cancer.

- Approx. 40% - 60% of women experience quality of life side effects from Tamoxifen.

- The percent of women who develop serious side effects from Tamoxifen is: 

.   2% - Cataracts (i.e. 2% more women will develop cataracts than would have if they had not taken Tamoxifen)

.   1.5% - Uterine cancer

.   1% - Serious blood clot

.   0.5% - Stroke

.   0.2% - Death

The risk of death from Tamoxifen, while extremely low, is probably about equal to (or may even be higher than) the risk of death a patient faces from breast cancer after having a BMX for DCIS or a high risk condition.  And Tamoxifen presents the risk of all these other conditions which don't lead to death but can have serious consequences. 

Can anyone say that prescribing Tamoxifen to someone in this position isn't over-treatment?  Yet I've seen it happen, too many times. Doctors recommend it, or they prescribe it when their patient asks.  Yes, it's true that we can't know if this one woman will be the 1 in 500 who has an invasive recurrence that develops into mets, but we also can't know if she will be the 1 in 500 who succumbs to a condition caused by the drug itself or if she will develop catarcts or blood clots or suffer significant quality of life side effects.  This is perhaps a more extreme example of over-treatment than most, or may it's not.  Maybe it's just a more easily documented example. 

Remember the Hippocratic oath and the words "Do Not Harm".  Here's a quote from the modern version: "I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism."

Edited to add:  Colt, I wrote most of this prior to your latest post - but I got called away from the computer and didn't have a chance to post it until well after your last post came through.  But I think it's still relevant to the discussion and your position.

"But you see/ read doctors who go further and start exclaiming that larger GROUPS of women don't need this or that."  

Isn't that what Treatment Standards or Treatment Guidelines are all about?  Where would we be without those?  And how would they ever be changed if we didn't have doctors who upon seeing evidence start to question whether a particular treatment is needed for a particular group of women?  Of course, treatment standards need to be personally applied in each case but they are a necessary and valid starting point.

"Don't overstate what you know."  And don't under-estimate the significance of what we do know. 

jessica, to your comments, unfortunately the data is limited and I can only assess the data that's available (or that I can find).  So I had to draw conclusions from that.  It's imperfect.  And that's why I said it "seems to suggest" because there is no study that I can find that definitely answers the question Colt asked, however the data does seem to point in a particular diirection. 

Whether in fact there are more women being diagnosed who have regional breast cancer or whether the numbers are completely flat over the 20 year period from 1989 to 2009 I don't think really matters.  What matters is that it appears to be quite clear that early stagers are not making up a higher proportion of the total over this 20 year period.  The other factor that led to my conclusion that it's not just early stagers who are skewing the survival rate improvement is the 5 year survival rate.  Those diagnosed with a regional cancer, i.e. lymph node involvement, have seen as 7.8 pt improvement in 5 year survival over the 20 years, the biggest improvement of any group (vs. 2.3 pt improvement for localized and 3 pt improvement for distant).  Do we know that these 5 year improvements are reflected in 10 year or 20 year survival rates?  No, because that data isn't available anywhere.  But it's probably reasonable to assume that those with regional breast cancer are at least in part contributing to the long-term survival improvements.  And then there is the data from M.D. Anderson, which was included in the BC.org article.  That data again shows that it's those diagnosed with regional breast cancer who've seen the greatest net improvement in 10 year survival rates over the past 60 years.

So do we know this for sure?  No. I wish the data was available, but it doesn't seem to be. However working with the data we have, I'm pretty comfortable in saying that it appears that the long-term survival rate improvements for breast cancer are not being driven just by the fact that a greater percent of women are being diagnosed at an earlier stage (in fact that might not factor into the improvements at all) but more by the fact that a greater percent of women who are diagnosed with regional breast cancer are now surviving long term.

Edited for typos/grammatical errors only.

Beesie,

I read the Atlanta article. Thanks for suggesting it...it was good and I want to get his books...;)

Beesie, Vor, and EveryOne:



What other books about BC, cancer in general, advocacy, etc. are your *favorites* ...the ones you highly recommend?



And, which Medical Journals, cancer blogs, magazines, websites, and email newsletter subscriptions do you most prefer?



I'd really appreciate this particular thread's favorites...Please share...it will help many of us...;)



THANKS!!!

Violet

Violet... I posted the link for The Atlantic article. I'm glad you enjoyed reading it. I hope you will enjoy his book as much as Hortense. I have the same sentiments as she has.



With respect to reading, I couldn't begin to list all the places where I find reading material. I always suggest that people begin reading Pubmed. In fact, when I recently met with some researchers at Sloan Kettering, whom I met from reading their research on Pubmed, I shared some Pubmed articles with them that they had some how missed. All of us agreed that unlike the rest of the universe, when we had downtime, we would prefer surfing through Pubmed than Facebook.



Knowledge is wherever you can find it. Keep your mind nimble and curious. My best piece of advice is to try contacting sources when you read something interesting. You'd be surprised how welcoming people are when you discover their writings. People love hearing from others and they enjoy explaining their passions. Train your mind to also listen. Those echoes are also helpful in finding knowledge.

Vor,

Do you think it's best to start with Dr. Brawley's older book or his new one?

I will check out Pub Med... I saw it when reading on my phone the other day. I think you need to sign up with a password ...I'll do that and read from my laptop.

And I did see your post before about showing doctors articles from PubMed that they weren't aware of...very cool. I realize that you /others couldn't list all of your favorites. I just had wondered if there were a few that really stuck out --as if, you could only mention say, 5 sources to someone...;)

And you are right, cancer is not the only horrendous disease out there. I think I mentioned before to you on a different thread that I had a 2 month old baby/ child that died of SIDS. They STILL don't really know what causes it. There are theories, but they just don't know, and of course SIDS is fatal with no warning signs...:(

The Human Condition is plagued by so many serious and complex diseases...many of which we, personally, won't become knowledgeable or passionate about...unless of course, either we or a beloved friend or family member gets diagnosed with such an illness.



It IS a good reminder for ME to remember that breast cancer isn't the ONLY disease to be concerned about (& my family, as yours, has had way more than its share of various diseases/illnesses/ med. conditions!)...NOR the only disease without a "cure"...



I LOVE when I can step back for a bit and gain some Perspective...get off of "ME Planet" for a time...

so-to-speak...;)



Love all of the #foodforthought



Violet

Jessica... No one here needs to justify the treatment they received. If you have some time, try reading Dr. Brawley's book. Once you read his book, you will understand what he means by what patients, and in some cases their families, "need." I hate to sound too simplistic in trying to summarize the important issues he discusses in his book. They are very complex issues about healthcare. Again, all I will say about his book is to paraphrase his words by saying, we all need "rational" healthcare and with so many competing forces, it is difficult for patients to determine what is "rational" and what care do they actually I"need." Likewise, his anger at the medical establishment is found in most chapters. Beginning with the first chapter with the story of the woman who arrives at the hospital with her breast in a bag, he argues that she was given too few opportunities to in her life to even address her health care "needs" before her situation became dire.





Most of us here discuss our treatment options. We argue over the amount of screening that is "necessary." What none of us discuss is how over, and in that woman's situation, under used the healthcare system is. Dr. Brawley drives home that point in every chapter. How the system is skewed leaving people over and under treated. After you read the book, you will come away feeling that the way the system presently works, makes it almost impossible for the average person to know what is "rational" and what is not. That is very scary and that is what makes Dr. Brawley the most angry.





My favorite chapter was the one where he flings grenades at advocacy groups. Reminded me of Gail Sulik's terrific book Pink Ribbon Blues where she takes jabs at the whole "Pink" movement that she believes has done more harm than good.



Once again, I think Dr. Brawley is very courageous for having written the book and giving a voice to this complex, important issue regarding healthcare.

Colt... Many of us have been supportive of you with respect to your beloved wife's breast cancer diagnosis. However the tone of your anger at the medical establishment not giving you the answer you want to hear has IMHO become deafening. Over and over again you rail about the uncertainty. I choose with grace to accept, that, on one hand, with life there is no such thing as certainty while also appreciating where there is life there is hope.



I don't doubt that you have an appreciation for other illnesses. My concern for you is that you want to hear something that will engulf certainty in your life. I believe from my own life experiences that will never happen. I choose to humbly accept uncertainty in my life and let all the possibilities, good and bad unfold around me. Uncertainty doesn't necessarily mean that our outcomes of it will be bad. Nor does uncertainty make me angry. And most importantly, uncertainty hasn't changed me from living my life to the fullest.



And yes... It was my intention to give you a talkin' to. I hope you will accept what I am telling you from a perspective of meaning well by you and not from a point of being critical.



Perhaps you can read Dr. Brawley's book and then decide how critical of him you wish to be. I think if you read his book you might become all the bit wiser and become his chief advocate. And then maybe someday we will have a healthcare system in place that we can all respect.

Relax. She didn't twist anything. She simply made the point that there are mulitudes of terrible illnesses that many of us are unaware of because they don't get much press. I'm helping at a fundraiser this Sunday for one that we hope will lead to more recognition and awareness, and through research, better diagnostic tools so that those of us who get it can be diagnosed and treated faster. While I have breast cancer and understand that it can kill me, so can many other things. 

I should have stopped at:



"No hard feelings. But I'm done. Those who understand me on this don't need anymore. Those who don't or don't want to understand---there is no more I can do to improve the situation. So I'm leaving it alone. And I hold no animosity and thank you all for the discussion. "



MY bad.



I apologize for detracting from what should just be a productive discussion.



God bless everyone here.