Adjvnt Therapy: Destroys or delays growth of stray BC cells?
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For me with "extemely" dense breasts, the mammograms I've gotten fror 10 years were USELESS! The worst part is that the doctors never told me they couldn't see anything. I found my own cancer because my breast turned red. IDC 3.6 cm. If they are going to do tests, they should at least tell us if they can't see anything in the test.
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The question has been answered. Whether adjuvant treatment prevents or delays recurrence, the results are the same. Fewer women diagnosed with breast cancer are dying from it. Therefore, the treatment has saved some lives...or life/years, more accurately, because no life can be saved forever. We all do end up dying of something -- whether BC that didn't respond to treatment; a late-term effect of treatment; or something else entirely.
Although all studies have flaws, like all people, it doesn't make them worthless. Taken together, they have yielded a wealth of information about breast cancer, treatment, effects, etc.
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The original "question" was a whole series of questions. The studies have implied answers to some of the questions, but I don't think we have reached the definitive answers by a long shot.
My MO is very no frills in his follow-up of women at my early stage. No tumor marker tests, no scans, no Oncotype (but I asked for and got that one anyway.) He used Adjuvant Online for treatment planning, and now just does routine bloodwork, that's it.
cary1, the first year to two years, I was seeing someone about every 2-3 mos., but over time I dropped my RO and my BS, so now my B/C follow-up is only with the MO every 6 mos., and I do the 6-mo. mammos every six mos. staggered in between. Personally, happy to have as few as possible now.
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For me, the difference between prevention or delay is a significant one. The reason I feel so trapped in my life (to my extremely stressful job with its good insurance policy) is that deep down, I see recurrence as inevitable. If health-care reform had been different and immediately protected adults with preexisting conditions and had a national health plan, I might feel otherwise. I guess that is why I would like to know how chemo actually works.
I reread the original question and no, I don't think it has been answered, especially on the issue of chemo for Stage IV as opposed as for early stages. What makes chemo sometimes seem like so much smoke and mirrors is that the mechanism, as the poster pointed out, is not clear. Only the statistical correlations about survivor rates are. Those results could be other factors all together.
I did every form of treatment they told me to do. I didn't question that at all. I do not regret doing chemo, even with all the SEs during, the continuing brain-fog issues after, and, for me, the worst part of having dozens and dozens of people around the office look at me then (and sometimes now) with that disgusting stricken look. Honestly, the violation of my privacy in this BC thing was equal to any other aspect of chemo. That said, while I don't regret it, I would like to know exactly what chemo does and it troubles me that we don't know the difference between prevent and delay. My onc will never be straight with me about odds on recurrence.
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cary1,
If you look at my signature line below you will see that we have similar stats and I was diagnosed in 2008. No, I do not think your followup treatment is what is usual. I actually have two med oncs because I am seen locally and at Moffitt Cancer
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continue post.................
I have my testing, mammos and mri's done at Moffitt and see an onc there who I originally saw at the beginning for a second opinion. So I am the opposite, I may be on overload. I still see the local on every 3 months and have my bloodwork done there. I assume they will switch me soon to every 4 months or every 6 months, but I also see the onc at Moffitt 3 or 4 times a year.
My oncs are in agreement about not tumor markers and I never had a PET. They will only do that if I present symptoms, so hopefully I will never have a PET
.Personally I like being under a microscope, somehow it makes me feel safer. I celebrate 3 years on July 14th and I hope to go as long as Betty Ford........................37 years after diagnosis and treatment.
I would question the infrequency of your bloodwork and checkups. Just my opinion.
Caren
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Kira, I quit taking Tamoxifen after 14 months, because I went deaf....It is called Deafness from Tamoxifen.... And my little Oncologist just wanted me to stay on it, for almost 4 more years. I printed off so many pages of information to show her WHY I quit the pill. But then she wanted me to start Femara. I am just scared to death of any more drugs, to "prevent" cancer from coming back. So since I am not taking Tamoxifen, I didn't know why I should stay with the Oncologist who wouldn't listen to me..... She was ordering blood-work every 3 months, & it never changed.
I called my Radiologist, explained the situation to her, showed her all of the information about Tamoxifen, and she said she would continue my care, like ordering Mammograms, and NOT doing the 3 month blood work, because she didn't believe it did any good, because I was " IDC, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-" My Oncotype score was 19, and I didn't need chemo.... So I go back in November after a "diagnostic Mammogram" and I'll bet by then she will say "Okay, you are 2 years out" so come back next year....
I just feel I am one of the very fortunate ones...
Beeb....I like what you posted! It's true.... We can all only do as much as we can to try & convince ourselves that this cancer is gone...and will never come back.... I'm more afraid of Heart Disease now than anything, especially at my age.... So I try and prevent THAT problem....And I don't like to fall....Ha! But I've had the pneumonia shot, the shingles shot, & every year those flu shots.... And I drink chocolate cokes once in awhile...
So I'm in good shape! 0 -
I disagree that there is a problem with overdiagnosis.
The problem, as I see it, is with overtreatment. And with the fact that doctors seem to be unable or are unwilling in many cases to explain to patients that not all cancers are alike. They don't all present the same amount of risk. Some cancers warrant the big guns, others don't.
I recall reading some time ago that there was a study that showed that women diagnosed with DCIS believe that they are just as likely to die of breast cancer as women who are diagnosed with late stage breast cancer. That is just so sad and so wrong. In my mind this misunderstanding - which can have a huge impact on the choice of treatments and the emotional well-being of the patient - is the fault of the medical community for not properly explaining to DCIS patients what DCIS is and what DCIS isn't. I would say that same thing about very early stage invasive breast cancer.
I was diagnosed with a very early Stage I breast cancer. In the sentence immediately following the one where he told me that I had breast cancer, my doctor went on to explain the exact nature of my diagnosis. So I understood right from the start the severity (or lack of severity) of my condition. I am grateful both for the fact that I was diagnosed at the time that I was - while my BC was still very early stage - and that my doctor had the sense and ability to explain my diagnosis to me. I never had the fear that I see in so many others who come here with early stage BC. And I never had the urge to overtreat.
JMO.
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Beesie, I so agree with you about over treatment, but unfortunately the Dr's have no idea who will go on to have a second cancer later on. Yesterday I saw my BS, I know his brother who is also a BS has been involved in much of the research Moffitt is doing. It is the first time I have seen him questioning if we are any further along in finding a cure or not. His response about my early stage cancer is "I just hope it doesn't come back, but we don't know". He is having second thoughts about all the Oncotype testing that has been going on, and has no faith in it anymore.
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Treatment does prevent recurrences in some women. That much is clear. It's the mechanism of prevention that the OP seems to be asking about. Does treatment just delay the recurrence for 100 years, so that the person dies of something else? It doesn't matter, because a dead person can't have a recurrence. So the recurrence has still been prevented (through a long delay).
Again, the simple way to ascertain that is to look at the number of women dx with breast cancer, vs. the number of women who die from it. Only about 20 percent die from it. The rest have had recurrences either prevented, or delayed beyond the end of their life.
However, no one knows if they will be the person who does have a recurrence. I deal with it this way -- since, after all of my treatment, I will have about a 15 percent chance of recurring, I allow myself to worry about it 15 percent of the time. The other 85 percent of the time, I have to assume I'm cured.
Cary1, whether or not you ever have a recurrence, your cancer history means that you are likely to need lots of medical care in the future -- whether for monitoring of recurrence/new primaries; for after-effects of treatment; for taking medications, etc. I'd say it's key to have good health insurance. But, I'm sure there are other ways to get that, without necessarily sticking with your current high stress job.
I agree with you, that the Obama Health Plan left a huge gap for people like us. But, it is what it is. Only time will tell who treatment has worked for, and who not. Nobody has a crystal ball.
Your onc should be willing to tell you about your recurrence risk. If not, Adjuvant Online and/or CancerMath can also calculate it. But again, that doesn't tell you whether or not you will recur, only how many women did out of a 100 women with cancers just like yours and treatment just like yours.
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Can someone elaborate about the Obama Health Plan gap for cancer survivors? I am admittedly very ignorant on it.
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Pejkug3 - the gap is one that the health plan would close - not create. The trouble is that it would not come into effect until 2014 due to industry pressure - it would prohibit insurers from imposing pre-existing condition exclusions for adults, something helpful not only to cancer patients but anyone with a history of a serious illness or a chronic condition.
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The other problem with the health care bill is that it required each state to offer a plan for high-risk people (like us.) You are guaranteed entry for a 'reasonable' premium. However, one of the conditions of eligibility is that you cannot have had health insurance for 6 months before enrolling in the high-risk plan. That would mean that someone like me or Cary1 would have to give up our insurance and go without it for 6 months in order to qualify for the state's high-risk plan. Well, that would obviously be terribly risky for any of us, so we have to hang onto whatever insurance we currently have, or can get -- even if it costs an arm and a leg (like mine) and has coverage gaps.
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I'll just chime in here rather out of order - chemotherapy damages cancer cells and many are not able to recover from the damage and they die. If there are cancer cells in other areas of the body some may die and some may survive chemotherapy. Do the survivors go on to produce mets? I think its an interplay between the surviving cells, the surrounding tissues, the person's immune response and any medications they may take to inhibit the cancer cells. As far as I can tell we just don't know if there are any cells out there and so we do the best we can.0
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I see. Thanks for clearing that up for me, Athena.
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kira, it's true that doctors don't know who will go on to have a recurrence but they can assess your risk based on your pathology and other factors (regardless of whether the Oncotype is helpful or not) - we do not all have an equal chance of having a recurrence and we do not all have an equal chance of dying of breast cancer and our doctors know this.
Because all treatments come with risks and side effects, the treatments that are appropriate for someone who has a 20% chance of distant recurrence likely should be different than the treatments given to someone who has a 2% chance of distant recurrence. The treatment offered to each patient should be determined based on assessment of the overall benefit vs. the overall risk of each therapy for that particular patient. It is true that the woman who has a 2% chance might be the one who has the distant recurrence and the woman with the 20% chance might live the rest of her life never having to deal with BC again. But it's also true that even with treatment there are no guarantees - no treatment is 100% effective and every treatment has side effects.
So let's say that we have a treatment that is 50% effective and has a 5% risk of serious side effects. If 100 women in each group are given this treatment, in the 2% risk group, you will have 99 women who don't develop mets (including 1 woman who otherwise would have), 1 woman who will develop mets (despite having the treatment) and 5 women who will develop serious side effects from the treatment. In the 20% risk group, you will have 90 women who don't develop mets (including 10 who otherwise would have), 10 women who will develop mets (despite having the treatment) and 5 women who will develop serious side effects from the treatment. Looking at it that way, if it were me and I was in the 20% group, I would take the treatment. But if I was in the 2% group, I'd pass on the treatment.
And I did. I think Tamoxifen provides a tremendous benefit to many women with breast cancer, but I passed on Tamoxifen. This was on the advice of my oncologist, who advised me that for me, the benefits barely (if at all) outweighed the risks. So I live with the fact that I'm not taking anything to help reduce my risk of recurrence, but I balance that concern by knowing that I'm not taking something that would put me at possibly an even greater risk of other health issues. And I realize that if my risk of a local or distant recurrence had been just a little bit higher, I probably would be taking Tamoxifen because the risk/benefit equation would have swung the other way.
This is the sort of treatment discussion and assessment that every patient should have - after their diagnosis is explained to them so that they understand their risk and aren't just reacting to the words "you have breast cancer". That might reduce some of the over-treatment and that in turn might alleviate some of the concern about the harms of over-diagnosis.
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Beesie, As always your knowledge is so helpful. I think you have just stated my BS opinion in so much more helpful words. For me the chemo proved to be worse than it's benefits hence his and the Onc's decision I should not continue, but Femara for me makes sense, I have no over riding health issues with it, and it will reduce the risk for me. As far as more than 5 years of any AL his feelings at this time is no.
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Beesie... I'm the one that asked my Oncologist for Tamoxifen....I was thinking because my friend took it for 5 years, after her mastectomy, and this was 12 years ago, that since she did not have Breast Cancer again, I would have the same treatment.....and outcome!But I am older than she was when she was diagnosed...and she had no problems or side-effects. I wasn't bothered by too many either....until I lost my hearing..... So after 12 months, I couldn't hear. I spent 2 more months trying to figure out WHY!! Tried treating it like allergies.... More pills! It didn't help. My Husband kept saying "it HAS to be something you are taking"....I said "No, that I am only taking Tamoxifen"....But I thought maybe I can find out something by researching it. And I did! So I quit the pill 2 months later... Another gal on BC.Org also lost her hearing, after 6 weeks on Tamoxifen..... I found a lot of information that made me believe that this was the cause. My hearing will never come back, but it doesn't matter....
I can hear with good hearing aids now..... If my Oncologist would have just sat down & listened to me when I was asking her questions, if she would have had the slightest bit of sympathy when I cried and asked her if it was the Tamoxifen... If she could just have treated me with compassion and respect for what I was going through... But she acted like she couldn't have cared less....
So that's why I won't take any more drugs, nor go back to her. I WAS at risk, and there is nothing on the label that talks about hearing loss.... But it happens....Just like other drugs can cause something un-heard of in other women.
Sorry, but I don't trust the major pharmaceuticals....Their job is to push their new drugs onto the Doctors & medical profession.... I know a LOT of women have benefited from Tamoxifen and the other Als, but I can't take the chance. I won't post on the Tamoxifen thread anymore, because I don't want the gals to be afraid....
I'm just glad this thread can kick around all of our thoughts, and find other women who feel the same way.
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Chevyboy, You really have been through quite a lot. I think we have similar stories in some respects. After my 1 and only chemo treatment I got the worst headache I have ever had, along with losing my eyesight. When I talked to that Onc. her response was do you think you have brain mets? What, I never even gave that a thought. Thank goodness it was not permanent, but she really didn't give a you know what about me. So the next morning my breast becomes infected, burst open, and is burned inside my body. Took my poor BS 4 months to finally get me healed, but I am permanently very badly scared from the entire thing.
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Kira....What a dink your Onco was! What a moron! She should NEVER have said that to you! I'm so sorry..... Sheesh! I hear of so many freaky things happening, that I never would have thought of. I'm sorry about your problems....I mean that is major!
What caused that? Did they ever tell you? I got an infection from the MammoSite Device being inside my breast, and the tubes hanging out, but after they took the Device out, the antibiotics did their job,.... You are scarred? I know...... but what can you do? I'm just sorry....
Tell me who it is, & I'll come smack them along side their head.0 -
Losing hearing, losing eye sight.... We really need to come up with better treatment, especially since both of you, Kira and Chevyboy, didn't even know for sure if there was cancer that needed treatment. I have a huge problem with adjuvant treatment, even though I agreed to some myself. But your cases are not especially rare. They are very real risks for an unknown hazard.
We don't know how many lives are saved. We do know how many are scarred. We must do better.0 -
Chevyboy, My BS is of the opinion I am very sensitive to chemo. I had my first infusion about 3 weeks after the radiation, and yes it was internal. It was the Contra device. I got something called radiation recall from the chemo, but since it was internal it burned from the inside out. The onc's opinion was she wanted nothing to do with the situation, so basically don't talk to me. I guess it went before some review as I was told by the BS yesterday I was very unusual, but they would never do chemo so soon after radiation again.
By the way had no problem with the contra device or infection. I had almost completely healed. It looked great, and the BS had done a very good job.
By the way the only thing holding the incision together now is radiation scar tissue, so very week, and must be treated with care.
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This is from NPR.
Is Preventive Medicine Actually Overtreatment?
February 11, 2011
[20 min 47 sec]
text size A A A February 11, 2011In Overdiagnosed: Making People Sick in the Pursuit of Health, Dr.
H. Gilbert Welch argues that modern medicine is looking too closely for disease,
and that unnecessary screenings, MRIs and CT scans turn healthy people into
diseased patients, by revealing often harmless abnormalities.Copyright © 2011 National Public Radio®. For personal,
noncommercial use only. See Terms of Use. For other uses, prior permission
required.IRA FLATOW, host:
Up next, for decades, one of the routine treatments for women with breast
cancer has been not only to remove breast tissue but to cut out a large number
of cancerous lymph nodes around the armpit also. But a new study out this week
in the Journal of the American Medical Association suggests that sort of
extensive surgery may actually offer no benefit for some women with the early
stage breast cancer.For women in this study with and without the operation but undergoing chemo
and radiation, survival rates were very high, both of them, around 90 percent
over five years. In this case, at least for about 20 percent of breast cancer
patients, it appears that less is more, and they can do without the painful
surgery, an example of overtreatment.But overtreatment isn't just a problem for patients diagnosed with cancer. It
could sometimes be a problem for healthy people, as my next guest writes in his
book "Overdiagnosed: Making People Sick in the Pursuit of Health," because even
healthy people are subject to more and more tests every time they visit the
doctor.Think about it, what do you do? You get the normal tests. You get your
cholesterol level, maybe your liver test if you're doing statins, you have a
PSA, you have a body scan, tests that are often they often result in treatment.
And because the traditional dogma is, as my next guest writes, more early
diagnosis means better medical care, which means more treatment; and more
treatment means better health.But is that traditional view true? Is it accurate? Should we still be
thinking about it that way? Are all these tests and treatments actually
improving our health or are we looking too hard for disease?Dr. H. Gilbert Welch is the author of "Overdiagnosed: Making People Sick in
the Pursuit of Health." He is professor of medicine at Dartmouth Medical School
in Hanover, New Hampshire. He joins us from Vermont Public Radio. Welcome to
SCIENCE FRIDAY, Dr. Welch.Dr. H. GILBERT WELCH (Author, "Overdiagnose: Making People Sick in the
Pursuit of Health): It's great to be with you, Ira.FLATOW: Why is it because doctors can do all these diagnoses, all these tests
that they do, do them?Dr. WELCH: Well, certainly, part of it is what's possible, and what's
possible is, of course, changed dramatically over the last year. But it's also
part of our ethos, if you will, that it's always a good thing to look for early
forms of disease. And, of course, that message just been sent out to the public
through the media and other sources that, of course, the thing you want to do is
look for early forms of disease.But the truth is there are really two sides to the story. I think patients
are used to thinking of treatments as having side effects, but so does testing.
And the side effect of looking for early forms of disease is that we find,
virtually, all of us have some. That's because we all harbor some abnormalities.
And we never know which patients are those that have abnormalities that are
going to cause problems in the future. So we tend to treat everybody we find
with an abnormality and that means we're just treating some patients who can't
benefit from our treatment because they were never going to develop the problem
at hand if they're overdiagnosed.FLATOW: But how do you say to the person, you know, that maybe in the
minority, as you say, that you may have saved that person's life by
overdiagnosing them? Is that worth of maybe one in a hundred cases?Dr. WELCH: Well, I think that's the question we all need to face. And, you
know, sort of, traditionally, doctors have focused on the one out of a thousand
we might help by looking for early forms of disease. But we haven't really asked
the question, what happens to the other 999? And this problem was really
demonstrated to us in prostate cancer screening, which is really a poster child
for the problem of overdiagnosis.20 years ago, a simple blood test was introduced. And 20 years later, over
one million Americans have been treated for a cancer that was never going to
bother them. That test was the PSA, or prostate specific antigen. And it turned
out an awful lot of men had abnormal PSAs. Many were found to have microscopic
cancers far more than whatever suffer from prostate cancer.Now, you might say, does it matter? Yeah, sure it matters because most of
these men were treated with either radical surgery or radiation. And roughly a
third suffered side effects of treatment generally related to bowel, bladder or
sexual function. Even a few have died from it.So this is a problem. It's a matter of finding the balance between the
question of just how hard we should be looking for problems in well patients.FLATOW: This is SCIENCE FRIDAY from NPR. I'm Ira Flatow with H. Gilbert
Welch. We're talking about overdiagnosis. He's the author of "Overdiagnosed:
Making People Sick in the Pursuit of Health."And I you know, you picked up on an interesting line there because prostate
cancer is one of those things where people are now saying, you know, every man
is probably going to have prostate cancer if he lives long enough sometime in
his life. And maybe we should just be do watchful waiting instead of doing all
that treatment for some people.Dr. WELCH: Well, I think that the question here is - before we get to the
question of watchful waiting, at which point the patients already been told they
have prostate cancer, I think we need to move back a step and recognize that the
really important question is how hard to be looking and what different patients
want. And I'm not arguing people shouldn't have PSA test. I'm arguing they
should know both sides of the story. And I think different people in the exact
same circumstance can make different decisions about it.FLATOW: And so you have opted out of the PSA test?
Dr. WELCH: I certainly have. Just - first, there's a little bit of confusion
about whether the test actually does do what it says it's suppose to do, which
is to lower prostate cancer mortality. I believe it does. But I think you have
to screen about a thousand men for a 10-year period annually for one to avoid a
prostate cancer death. Now, that might seem like, sure, let's do it, if there
was no downside to the process. But there is a downside to the process.
Somewhere between a hundred to 200 hundred will have to biopsied over that
period.And more concerning, somewhere between 30 and 50 will have to be treated for
a cancer that was never going to bother them. Now that treatment, as I said
before, you know, had some real side effects. About a third of men will have
some sexual, bowel or bladder dysfunction. Now, for me, as I look at those
numbers, I said, boy, that's not a very good deal. I'll stay away from it. I'll
accept the fact that maybe I'm the one in a thousand that will be helped. But I
don't want to make that mistake, somewhat more common side effect of being
treated unnecessarily.FLATOW: Mm-hmm.
Dr. WELCH: But it doesn't really matter what I think. It matters what
patients think. And different patients may feel differently about it. And if
they want to have prostate cancer screening, I'd say, go ahead. I just think
people should know both sides of the story.FLATOW: All right. We're going to come back and talk more with Gilbert Welch,
author of "Overdiagnosed: Making People Sick in the Pursuit of Health." Our
number: 1-800-989-8255. What do you think? Do you think you're getting too many
tests at the doctor's office? Are you willing to forego some tests and maybe
take your chances, thinking that, you know, it's not quite necessary? Give us a
call: 1-800-989-8255. You can tweet us @scifri. Stay with us. We'll be right
back after this break.I'm Ira Flatow. This is SCIENCE FRIDAY from NPR.
(Soundbite of music)
FLATOW: You're listening to SCIENCE FRIDAY. I'm Ira Flatow.
We're talking about overtreatment this hour. And just to let you know that we
are keeping our eyes on the wires and what's going on in there at other parts of
the world and keeping you up to date, especially about what's going on in the
streets of Cairo, where there has been lots of jubilation following President
Hosni Mubarak's stepping down from his post today and ceding all power to the
military.Vice President and intelligence chief, Omar Suleiman, announced during an
evening prayer that Mr. Mubarak had passed all authority to a council of
military leaders. And President Barack Obama said, just a few moments ago, that
the world has, quote, "witnessed a true moment of history." And you can stay
with NPR News throughout the day. We'll bring you up to date as things happen.Right now, we're talking about overdiagnosis with my guest, Gilbert Welch. He
is author of "Overdiagnosed: Making People Sick in the Pursuit of Health." Our
number: 1-800-989-8255.When I go to my doctor, he takes, you know, vials of blood and he runs dozens
of tests through them. Am I being foolish having all these tests done?Dr. WELCH: Well, it's certainly a relevant question. We've gotten much more
sort of infatuated with sort of routine screening tests, and some of those tests
are reasonable to consider. But one of the things you should know is that we've
been consistently changing the rules about what constitutes abnormal.I'm talking now about conditions that are defined by numbers - things like
high blood pressure, high cholesterol, diabetes and osteoporosis. All those
diseases are defined by a number. If you're on the wrong side of that number,
you have a condition.FLATOW: Yeah.
Dr. WELCH: If you don't - on the right side of the number, you don't. But the
numbers we've used to define those diseases have changed over the last 20 years.
And in each case, they've changed in the same direction, to label more Americans
as abnormal. And that's happened for a number of reasons. One, it's sort of true
belief that it's always good to identify more people at risk, sort of a language
that people would use. But there's also a lot of money behind it because it is -
the quickest way to expand a market for a drug is to expand the number of
patients who are supposed to take the drug.And so there have been a lot of problems with conflicts of interest and
physicians on these consensus panels that define these diseases. And that's just
another dimension of the problem of overdiagnosis. This is labeling more people
as abnormal, as needing treatment. And as you move into people who have milder
and milder forms of a condition, fewer and fewer of them will actually go on to
develop the feared consequence of the disease. But they still suffer the harms
of treatment.FLATOW: Mm-hmm. Let's go to...
Dr. WELCH: And so this is the kind of balance we have to think about more in
this country, particularly since, you know, every day we get new tests. You
know, you hear about a cancer test...FLATOW: Right. Ask your doctor.
Dr. WELCH: ...that can find a single - yeah.
FLATOW: Ask your doctor about this drug or this new test. Let's go to Dave in
New York, New York. Hi, Dave.DAVE (Caller): Hi. Thanks for taking my call.
FLATOW: Mm-hmm.
DAVE: I just am curious as a patient whether or not physicians are guided by
liability to categorize as much as they can about a particular patient. And as a
patient who carries insurance, am I at risk of being dropped? Because now, all
of a sudden, even though I'm asymptomatic, I've now been tagged with a potential
problem.FLATOW: Is - are doctors over-testing because of liability? Are they afraid
that if they don't, there's some liability there?Dr. WELCH: Well, David actually brings up two issues. Let's first deal with
the malpractice issue, which all my colleagues would want me to mention, which
is part of the problem. It's not all of the problem. We feel, as physicians,
that we're punished for underdiagnosis, but there's no corresponding penalty for
overdiagnosis. So that's totally a symmetric set of incentives and, of course,
that pushes us to overdiagnose.But he also brings up another problem, which may, hopefully, will be fixed
with health care reform, although I think it remains to be seen. And that is -
there are downsides to having diagnoses. And one of the most immediate one for
patients is - in the past, at least, and probably still currently - it does
threaten your insurance. It may make it a lot more expensive to get insurance or
you may not be able to get it at all.But there are other downsides for diagnosis. You know, just being given a
diagnosis tends to - can affect people's self-perception of their own health.
The truth is, you know, health is more than simply a physical state of being.
It's more than simply the absence of all abnormality. It's also a state of mind.
And it's hard to feel too well when doctors are constantly looking for things to
be wrong.But the biggest problem with overdiagnosis is that it triggers overtreatment.
And all of our treatments have harms. They range from the headaches of renewing
prescriptions, scheduling appointments, subsequent testing, to the physical
harms of the side effects of drugs, complications from surgery and even death.FLATOW: Thanks for calling. And some of the times, is it not the case that
these treatments - you talked about overtreatment as being the real danger here
- that doctors make money on those treatments? They might be happy to have that
diagnosis because they've got a treatment they can give you that will make them
money?Dr. WELCH: Yes. It's true that doctors make money on it, probably even more
important, institutions make money on it. And now I'm thinking both about
pharmaceutical companies and device manufacturers. And I'm also thinking about
hospitals who have learned that disease screenings, free disease screenings, are
a great way to recruit new patients. And that raises some huge ethical issues,
whether this is the right thing for health care system to do is to be going out
to look to identify in new patients who will then be paying patients.FLATOW: Let's go to David in San Antonio. Hi, David.
DAVID (CALLER): Hi. As a prostate cancer survivor, I must say I generally
agree with what you're saying about overdiagnosis. But the PSA, in general, just
raised my ire and desire to call, because I feel like - I'm four years out from
having prostate cancer and having the organ removed by robotic-assisted surgery,
and I am totally happy that I did it.And if I had not been having the regular PSA test, which my physician
recommended since age 45, established a baseline for what my normal was and saw
an up-going trend. Mine had reached - it was 1.1, 1.2, 1.3, then the other year
it was 2.3 and then 3.9. He said, well, you know, it's trending up. We better
have you sent for a biopsy.I went in and saw the urologist, and he did the famous DRE and felt nothing.
And said, well, we better schedule a biopsy anyway just to be sure because my
finger isn't 100 percent accurate. And, well, a couple of weeks later, I had the
biopsies as well. Make sure my people call you back. I don't see anything
abnormal in the ultrasound that guides the probe nor in what we see so far.Well, bottom line, the following Friday, the doctor called me. And when the
doctor calls you, it's not to give you good news. And basically, he said your
Gleason score 3 plus 3 bilateral and (unintelligible) to remove it. And I had it
removed. And I was very happy that I did. So my bottom line is I think the PSA
is a very useful tool. It does not diagnose cancer. But in the long term, it -
watch your trend, and it'll tell you something is going wrong in your personal
case.FLATOW: Okay. Thanks for that testimonial. Gilbert? Dr. Welch, any - how do
you react to that?Dr. WELCH: Sure. I hope David was helped by the test, and I'm glad he's doing
well. That's great and that's important. The truth is most men found to have
prostate cancer following a PSA are not helped by the test. Probably one out of
1,000 that have been screened for 10 years will be helped by the test. We
believe that to be the case. But somewhere between 30 and 60 are treated
unnecessarily. I hope he's not in that group but the chances are he is.And that's the problem with the - with early detection of, particularly,
prostate cancer, but also thyroid and breast cancer. As we look for early forms
of cancer, we recognize that virtually all of us harbor some early cancers. And
we don't know which ones are ultimately going to be -matter, so we end up
treating all of them. And that's the problem with looking for early forms of
cancer.FLATOW: So what do you do? What kind of advice do you give to people who go
in to their doctors for their checkups, their annual, their physicals? Do you
say to your doctor, I don't need this test? Don't give me that test. I've done
my homework. I shouldn't be having this. Are you telling your doctor what to do?Dr. WELCH: Well, I think the first thing people need to do is develop a
little bit of healthy skepticism about the value of early diagnosis. I think, as
a profession and the public health community, we've sort of systematically
exaggerated the benefits of it. And we've either downplayed or totally ignored
the harms. And it's time to be a little bit more open about both sides of the
story, and the story is a complex one. It's a little counterintuitive. And
that's why my colleagues and I wrote the book is so we could put it in one
place, across the series of diseases, the problem of overdiagnosis.And then I think patients have to do a little bit of a sort of
self-assessment. Where do they sit on the spectrum between wanting to pursue
disease? Is that the way they want to go through life, looking for things to be
wrong, always hoping that there'll be a chance that they'll be able to avoid
some future outcome? Or - and they accept the fact that they maybe medicalized
unnecessarily along the way. Or whether you want to go to the other extreme,
which I call to pursue health, which is to live well while you're feeling well.
Certainly, you see a doctor when you don't feel well. But recognize that you may
miss some potential benefit of avoiding a rare cause of death, but you also
avoid being medicalized prematurely.Now, I've drawn those as pretty discrete extremes. But I think this is a
question we all have to address particularly as there are more and more tests
and more and more ways we can look for things to be wrong within ourselves.FLATOW: Mm-hmm. So you're saying the treatment may be worse than not doing
anything at all? It's very...Dr. WELCH: It's not that - it's - I want to go back a step. It's before the
treatment. It's the test. Because once you're tested, once you're told you're
abnormal, I think you've already suffered some of the downsides of testing.FLATOW: Mm-hmm.
Dr. WELCH: So, again, I want to be clear to your audience. I'm a
conventionally-trained physician. I teach. I do research. I see patients. And I
believe American medicine can do really good things for sick patients. The
question is, how much to be involved with it when you are well.FLATOW: Mm-hmm. 1-800-989-8255. What don't we know about diagnosis? That it's
heading in a right direction or new techniques? Are there new techniques that
you think are welcome, that you're happy to see being developed, diagnostic
techniques, or we just - we have enough already?Dr. WELCH: Oh, no. I think we're making a lot of advances. And, you know, so
take CT scanning, for example...FLATOW: Mm-hmm.
Dr. WELCH: ...I mean, this is a way that - you know, it's been around 20 or
30 years, an MRI. It's a way we can now see the inside of the body in exquisite
detail. It's been a great advance for us to evaluate people who are acutely ill
and try to decide whether they have appendicitis or whether they're bleeding in
their head or something. This is - there have been wonderful advances.The problem is, when you deploy them on a normal population, the well
population, you also find a lot of abnormalities. Almost all of us harbor
meniscal tears in our knee, whether or not we have knee pain. We have discs
popping out of our back even - whether or not we have a back pain. So the
problem is they identified so many abnormalities in normal people, you don't
know what to do. But all of the pressures on us are to go ahead and to treat
those people.FLATOW: I got you. Dr. Welch, thank you for taking time to be with us today,
and good luck to you.Dr. WELCH: Well, thank you for having me.
FLATOW: You're welcome. Dr. H. Gilbert Welch, author of "Overdiagnosed:
Making People Sick in the Pursuit of Health." He's also a professor of medicine
at Dartmouth Medical School in Hanover, New Hampshire.This is SCIENCE FRIDAY from NPR.
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Hmmm. I think going deaf on Tamoxifen or blind from a chemo infusion *are* especially rare. And we *do* know how many lives are saves, we just don't know exactly which lives they are. That's the cost benefit analysis Beesie was talking about.
I had an almost 50 percent chance of dying of breast cancer in 10 years (and I was 35 at dx) with no adjuvant treatment after surgery, so for me, the choice was easy. But if I had been older, or earlier stage, my decision might have been different.0 -
Beesie...According to the author of the book that is discussed above, you can't separate over diagnosis from over treatment. Furthermore, if you look at the studies that I posted on this thread, the authors mention, like you mention, that one treatment that offers a 50% reduction in the risk of future recurrence for one woman, in absolute terms, may be only a tiny reduction for a second woman. It's sad that most people never take a statistics class and have difficulty understanding this concept. And like Dr. Welch says, some of what we learn runs counterintuitive to what we THINK we know......
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Here's the amazon link for Dr. Welch's book.....
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Kira (realizing this post will be many pages after you posted the article)....that is why I took scant lasting comfort in my ballyhooed score of 6 on my OncoDX....I mean I am not unhappy it was low but as I read the fine print on the test ...it only measured less than 700 women....oh well...progress not perfection. My onc tests fairly agressively even very early low grade small tumors following BMX.
Again, no guarantees. Absolutely every single study, results paper, etc....has more disclaimers in the fine print than a used car sales agreement. One of the ones that have been discussed here mentioned it included deaths from all causes in totals for BC deaths when it was not specified as to cause of death...numbers are numbers....I do analysis every day of the week...what you include or exclude makes all of the difference in the world. Of course the numbers I deal with do not address life or death matters. But philosophy is the same.
I told my onc i wanted a protocol I could live with the rest of life...not for five years or 10 years or whatever the next recommended length of time for AI or tamox...for it seems (just my observation) that there is a spike once treatment ends....in fact my arguement with my onc when she railing against my choices to do alternatives was a slam dunk when she said- do the AIs now and once you are off of those you can do the DIM and grapeseed extract...WTF? I thought you said those were woohoo.
When pushed about the most recent 2011 NCCN physician guidelines that stated in my case- "...antihormonals could be offered to prevent recurrence in contralateral breast ..." i pointed out the "could" and then reminded her I did not have a contralateral breast any longer.
Even in the guidelines none of the docs really agree on much- they code everything with numbers as to the level of disagreement...
Today I remain cautiously optimistic and ready to re-evaluate as needed.
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annettek, your onc might be more aggressive with the bloodwork because they can't get you in the mammo-squeezer any more. Do more BMx women get their tumor markers done, then?0
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my bc was found during annual mammogram...in the very same spot where the clip had been left following my needle core biopsy 8 years previously identifying beneign microcalcifications that were tracked closely the subsequent 8 years...at .5 cm I probably would not have been able to feel it for another 8. I am glad I had my mammo no doubt about it.
edited to repsond to elimar- no- the onc was not going to see me for another six months but base don my choices, wants to do the blood work every 90 days- that is ok with me...i see my BS at the end of the year- I just saw her last month and she showed me what to look for and how to look for bumps etc and will do an ultrasound in December. Currently the boobs are seen often by my PS as I go through the reconstruction process and he is astute as to any changes.
Have I been overtested? Yes, based on my pathology. Am I upset about it? No, I am not. I have had CT, MRI, PT/.CT, Bone Scan and Bone Density. I have had a zillion blood tests measuring everything in me (although to what end- who knows really, regarding the value of these). Base lines have definitely been established. That is never a bad thing. I have heard far too many stories of people being poleaxed by mets that were not found or higher stages not correctly diagnosed initially. The oncs and BS argued and contradicted each other (all are good physicians-different philosophies) as to the need for them (I was in the midst of changing oncs) but I said go ahead. I have signed any form there is offering my resuls to any researcher that wants them. I signed away my breast tissue for research. They can have my pee (which they took by the way) Sure I get anxiety before any of these. Most of which god willing I won't need any more (except perhaps bone density as I age and ultrasounds for my chest that now has implants) - the blood work, well, it is the best thing we have right now so they are welcome to it. We all approach this in different ways. I know ME and ignorance is not bliss, even while understanding I can't really KNOW anything.
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annettek, I agree with so much you are saying about the AL's. It is something that I have thought about hard and long. I wonder if taking the AL's now and doing something like DIM after I'm done with the AL's might give me that added time.
As far as the AL's and chemo as well I'm also in the might be considered. My tumor was .6mm .5 and less was not needed. As with so much it leaves us having to make very hard decisions on our own with little info in a very short time span. This is where our Dr's must hopefully give us good advice. I was very lucky with my BS who gaave me good advice as well as the radiologist he chose. I picked the Onc. I wanted local what a mistake. should have stayed with tried and true rather than local.
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