I think the message may finally getting through.
That message is that it’s not always the best strategy to treat cancer aggressively. Don’t get me wrong. If I have acute leukemia, I know I’ll need the big guns, every bit of chemotherapy appropriate to the disease that modern oncology can throw at it up to and including a bone marrow transplant. But what about prostate cancer? Breast cancer? Thyroid cancer? It turns out that more treatment isn’t always better for these diseases, depending on the subtype, and in some cases, such as early stage prostate cancer of low aggressiveness, it is quite reasonable to conclude that the treatment is more harmful than the disease. That’s because, if you’re a man and reach your 80s, there’s a 75% chance that you will have small foci of cancer in your prostate that you live with but are not what you ultimate die from. Autopsy series have shown this time and time again.
This concept is counterintuitive and goes against what most people understand about cancer. It even goes against what most physicians understand about cancer to suggest that there are limits to what early detection can do and that the early detection of cancer is more complex than moe people–again, even physicians–think. However, as I’ve described on this blog, study after study over the last few years have shown that detecting cancer ever earlier, finding ever smaller cancerous lesions, even down to small clusters of cells, does not necessarily translate to saving more lives. It also comes with a downside that has frequently been downplayed. As I’ve pointed out, the problem of overdiagnosis–detecting small tumors that would, if left alone, never grow to endanger the life of the patient is huge, but, more importantly, overdiagnosis leads to overtreatment.
The mainstream media is actually starting to pick up on this message, too. Th elatest evidence of this is a story published yesterday by the AP authored by Laura Neergaard entitled Overtreating earliest cancers _ but which ones? As is typical of a news story, Neergaard starts with an anecdote:
D.J. Soviero wanted the least treatment that would beat back her small, early-stage breast cancer, but her first doctor insisted she had only one option: tumor removal followed by radiation and chemotherapy.
Then she found a novel program at the University of California, San Francisco, that gave her an unbiased evaluation of the pros and cons of all treatment options.
“I realized that I didn’t need to use a sledgehammer. It was my choice,” said Soviero, of San Francisco, who went with the lumpectomy and radiation, but refused the chemo.
And it’s true. Again, let me emphasize one thing about this. We are not talking about large, palpable tumors here but rather earlier stage breast cancers, the kind that are typically asymptomatic and detected by screening mammography alone. Symptomatic cancers need to be treated, as we have good evidence for these that regression or failure to progress is rare and that failing to treat these cancers greatly increases a woman’s chances of dying of the cancer. However, as I have taken to blogging about lately, for mammographically-detected small tumors, almost always those detected by screening mammography, it’s not so clear whether all of these need to be treated. Overdiagnosis is being increasingly appreciated as a significant problem, and, indeed, may account for as many as 1 in 3 breast cancers detected by screening mammography (although more common estimates are on the order of 20%). There is even evidence–not bulletproof by any means, but intriguing evidence–that as many as 20% of mammographically detected tumors may actually spontaneously regress. Problems such as this in prostate cancer, for which overdiagnosis due to PSA screening was appreciated as a significant problem long before overdiagnosis was appreciated as a problem in other cancers, and breast cancer have produced new recommendations, such as the USPSTF guidelines on screening mammography that caused such an uproar last fall.
So we know that screening to find every earlier and ever tinier cancers results in overdiagnosis, the finding of cancers that do not require treatment. The problem is that we don’t know which cancers are safe to observe; so we treat them all, as Neergaard reports:
“The message has been, `Early detection, early detection, early detection.’ That’s true for some things but not all things,” said Dr. Laura Esserman, a breast cancer specialist at UCSF. She helped lead a study, reported last week, that found mammography is increasing diagnoses of tumors deemed genetically very low risk.
“It’s not just all about finding any cancer. It’s about being more discriminating when you do find it,” she added.
Today’s cancer screenings can unearth tumors that scientists say never would have threatened the person’s life. The problem is there aren’t surefire ways to tell in advance which tumors won’t be dangerous – .just some clues that doctors use in prescribing treatment.
I blogged about the study by Esserman to which Neergard is referring, by the way.
I feel obligated right here to point out that trying to predict which tumors require aggressive treatment and which do not is nothing new. Oncologists and surgeons have been doing that for decades. Commonly used predictive measures include characteristics such as how a tumor looks under the microscope to a pathologist, some molecular markers, location, and some radiographic characteristics. It’s not even an entirely new concept that some tumors don’t need treatment or don’t need a lot of treatment. Some of the chronic leukemias, for example. What is new is generalizing this concept and learning that it applies to many more cancers than we previously thought, including very common cancers, such as prostate and breast cancer, coupled with an understanding that screening tests tend to detect less aggressive tumors more readily than they detect rapidly growing tumors. I described this problem in detail three years ago. Now, it appears that we may finally be getting up the guts to try to do something about it, compelled by evidence like this on prostate cancer:
Nowhere is the disconnect more obvious than with prostate cancer screening. Most men over 50 have had a PSA blood test to check for it even though major medical groups don’t recommend routine PSAs, worried they may do more harm than good for the average man.
What’s the evidence? A study of 76,000 U.S. men, published last year, concluded annual PSAs didn’t save lives. A separate study estimated two of every five men whose prostate cancer was caught through a PSA test had tumors too slow-growing ever to be a threat.
A European study of 162,000 men screened less aggressively – a PSA every four years versus none – found seven fewer deaths per 10,000 men screened. But 48 men had to be treated to prevent each death, meaning many men who weren’t facing death experienced treatment that can have such side effects as incontinence and impotence.
Neergard also points out a study in JNCI that found that nearly one quarter of cancers diagnosed by mammography may be overdiagnosed. Somehow I apparently missed that study, because I don’t remember it. Maybe I’ll go back and look it up to blog about it, although its findings are in line with the findings of other studies recently, albeit with a lower estimate of overdiagnosis than some studies I’ve seen. Be that as it may, the study also apparently found that much of what mammography diagnoses is ductal carcinoma in situ (DCIS).
DCIS is a difficult problem. Frequently, it’s described as breast cancer that hasn’t broken out of the milk ducts yet. However, after decades of study, it’s still argued whether DCIS is truly a premalignant lesion or a precursor to invasive breast cancer. We do know that death from DCIS (more appropriately, an invasive cancer that we suspect to have developed from DCIS) is uncommon when DCIS is treated but we don’t know what percentage of DCIS lesions would, if left alone, actually progress to frankly invasive breast cancer; so we treat them all with surgical excision and most of them with radiation therapy afterward. Yet estimates of how often DCIS progresses to actual cancer when not treated are hard to come by, ranging from as low as 20% to over 50%. Being able to determine which cases of DCIS require no further treatment after surgical excision or even no treatment at all after biopsy would be a huge boon to women, sparing thousands of them every year from lumpectomy and radiation therapy, often followed by and estrogen blocking drug (Tamoxifen) for five years.
Esserman’s group is taking it even further than that. She has researchers looking at whether drugs like Tamoxifen can allow DCIS patients to avoid surgery altogether. I’ll have to be honest about this study, though. I doubt it will work for the simple reason that a large percentage of DCIS doesn’t even make the estrogen receptor (i.e., is estrogen receptor-negative). Some of it even makes HER2/neu. In fact, I wonder how they got that study through the IRB.
More promising to me are approaches looking at molecular markers described in Neergaard’s article to try to identify which DCIS lesions don’t need treatment. I’m also intrigued by this study:
Beyond DCIS, Esserman is designing a first-of-a-kind study to start by summer’s end at five University of California health centers. Women whose mammograms turn up a specific type of suspicious spot that is unlikely to be aggressive cancer will get the option of skipping today’s usual biopsy and repeating the scan in six months instead. She hopes to learn which early abnormalities are safe to leave alone.
“If you’ve had a normal mammogram and develop a new mass, don’t ignore that. If you have a new symptom, those are things you don’t want to ignore,” Esserman said. “The public also has to understand that it’s complicated and there are some cancers that are very slow-growing.”
A point of clarification is in order here. We actually already do this for certain mammographic lesions. I’m sure there are women out there among my readers who have been called back for the infamous “six month followup” mammogram. Most of those are for a lesion that’s categorized as a BI-RADS category III by the radiologist. (The BIRADS classification is a rating system of the level of suspicion for cancer there is.) In fact, for category III studies, the standard of care is a six month followup mammogram because only 0.5-1.0% of these will turn out to have cancer. Also, early all of those will be DCIS or stage I cancer. Waiting six months doesn’t impact survival in these cases. What it sounds as though Esserman is doing is to study women with category IV studies, for which biopsy is virtually always recemmended and which portend a 25% chance of there being cancer. She’s probably taking a subset of these women at the low end of the risk scale of women with category IV mammograms. While this is a good idea, it’s not going far enough. We need new imaging technology and a deeper knowledge of the biology of DCIS and early breast cancer. The same is true for many other cancers. Until then, we have to assume that every cancer we find is potentially deadly and treat them all. Until then, the key is to be able to explain the uncertainty involved with these issues to patients and help them come to a collaborative decision for care based on science, the level of uncertainty in the science, and their own tolerance for risk.
Neegaard mentions one type of harm that comes from ever-more sensitive imaging technology, namely the problem of the “incidentaloma.” Basically, an incidentaloma is a lesion found on a test done for another reason. Back when I was a resident we used to talk about them in patients who had a CT scan after major trauma in which a mass was found. The classic general surgery question is what to do with an adrenal incidentaloma, because all these abdominal CTs were turning up adrenal incidentaloma, the majority of which were benign. Over time, indicators of malignancy were derived based primarily on size. Below a certain size, and adrenal incidentalomas can be safely watched. Above a certain size, they need to be biopsied and excised because of the high likelihood that they represent a malignancy. If only it were so “easy” for other cancers.
There is another consquence of ever more sensitive imaging technology for cancer patients, and that is overtreatment of a cancer that does actualy need treatment. This is mostly due to what’s known as stage migration (colloquially dubbed the Will Rogers effect 25 years ago), a phenomenon I discussed in detail here. One example in breast cancer is how MRI scans. MRIs are more sensitive than mammography and ultrasound and therefore pick up more lesions cancer patients that, especially because the patient has cancer, surgeons feel obligated to work up fully. Unfortunately, although there was a period where practice changed to offering MRIs to evetry woman with breast cancer, it’s become clear that preoperative MRIs do not improve surgical management by decreasing the percentage of time it’s necessary to go back to take more breast tissue after a lumpectomy. Worse, there is more and more evidence that MRI use is associated with more mastectomies in women who probably didn’t actually need a mastectomy. Over time, surgeons started to realize this, and studies supported the hypothesis that doing MRIs preoperatively on every woman with breast cancer didn’t add much to the treatment plan for most women and are very likely increasing the mastectomy rate.
One of the interesting aspects about blogging is that I can go back and see the evolution of my own thinking on a topic. When I started writing about these issues, beginning back in 2007, I was pretty much of the mindset that screening is good and more screening is better. Well, not exactly, but I didn’t appreciate the phenomena of overdiagnosis and overtreatment anywhere near as much as I do now. My thinking has evolved considerably since then. In fact, I can honestly say that blogging about some of these studies has definitely been a significant contributor to the evolution of my thought on the matter. I’ve now become very much more interested in what approaches we could develop that would improve the specificity of treatment and spare cancer patients who don’t need them the harsh and nasty treatments that we so often subject them to. I can’t say that I’ve figured out yet how to study this problem in a way that hasn’t been well trod before, but I’m definitely working on it.
27 replies on “Cancer overdiagnosis and overtreatment revisited”
I am really glad there are people who get paid to understand everything in this blog post.
Thanks for the summary/update.
As a (potential) patient, I find myself torn between the desire to fix things, and the desire to avoid unnecessary surgery. Of course, both are reasonable goals: the trick is defining/figuring out what is necessary.
I agree that the new studies to evaluate less aggressive approaches, including observation, in DCIS management are critical. And that over-treatment of indolent tumors is a costly and (medically) harmful practice.
But I’m concerned this post may add to the general confusion about the value of screening for different kinds of tumors (e.g. breast and prostate cancers). Also, why focus on data regarding MRIs in breast cancer screening? MRIs are far more expensive than mammograms and have much higher false positive rates.
I think digital mammograms are the way to go. These should be studied for their capacity to detect true (invasive) breast cancer and save lives among middle-aged women. The task force in their November 09 analysis didn’t even look at the data for digital mammograms.
I wonder if we get to the same stage in dealing with early cancer signs like dentists do with problem teeth. I’ve had the same “potential cavity” mark on my chart for a decade, every time I go the dentist pokes the tooth, says it’s ok, and we wait another six months to see if we have to do anything about it.
Is there any data on how fast a breast cancer can grow from “lesion” past the “just” lumpectomy stage to full mastectomy? In other words, what’s the risk that observation only will lead to a more aggressive treatment due to a missed chance for early intervention?
What bothers me is the stated position on the ethics of observation. In prior discussions, MDs (I specifically recall Dr. Hall) have stated that it would be unethical to not treat a detected tumor, so it’s necessary to simply not look.
That bugged me, and it took a while to understand why. Aside from my bone-deep bias against willful ignorance, I mean.
What I realized is missing from that analysis is the patient as a “partner” in the decision process. As described, once a tumor is detected the treating physician has no alternative to going Gonzo. Sure sounds like the patient is strictly an object here, as though the last 50 years of medical ethics had never happened.
I’m one of those over-50 males who gets a PSA screen annually, right along with the head-to-toe-under-bright-light skin exam and greasy finger. I’ve discussed the guidelines with my PCP, and we’re both quite comfortable with the idea of establishing a baseline and keeping calm if there’s an uptick. If the risks for someone my age aren’t greatly worse for 4-year testing intervals, there’s also no harm done watching for a couple of years. If there’s a big change on retest, reconsider.
The thing is, I’m a reasonably intelligent and reasonably well-informed adult quite capable of making my own decisions and taking my own chances — especially if the experts I hire give me the executive summaries I need to do so.
Blog posts like this one, and the changes in practice and studies they describe, but the lie to sCAM claims that modern (real) medicine is all about making patients get more surgery, chemo, pills, etc., spending more money all the way.
Perhaps because I wasn’t referring to the use of MRIs in breast cancer screening but rather in the preoperative assessment of a known breast cancer. The point was simply that more sensitive isn’t always better for cancer in situations other than screening as well as in screening. Moreover, digital mammography is not significantly more sensitive and specific than good quality old-fashioned analog mammography. The primary advantages of digital mammography are storage (no more need for rooms filled with shelves full of folders of mammograms) and the ability to digitally manipulate the images and make flawless copies.
You should also discuss screening colonoscopy, for which the parameters are very different. As I understand it, there isn’t much of a problem of overdiagnosis: colon cancer is cancer, period, and will become very dangerous if left alone. While we may not know exactly what the likely fate is of pre-cancerous lesions, the good news is that they can be removed right then and there without invasive surgery, so you can actually do prevention as well as detection. I believe screening colonoscopy starting at 50 has been found to be quite cost-effective; subsequent intervals can be adjusted based on what is found in the first one, which also helps.
But I’d appreciate hearing your take on this.
Different cancers, different rules. Progression through the polyp to dysplastic polyp to carcinoma in situ to invasive cancer sequence in colon cancer is much more predictable than progression through the atypia to DCIS to breast cancer sequence.
Maybe one day I’ll do a post about this…
Is this a fundamentally American problem? I don’t want to get too much into politics, but my impression watching the health care debates over the course of 2009 was that people didn’t want to be cut off from the aggressive treatments, even if those treatments didn’t work. People in other countries seem totally okay with not having access to these screenings and procedures that we have do, but I’m not sure if that’s because of a difference in their culture or just because they haven’t been offered it.
A legitimate concern, but I think the waters are already so muddled that potentially stirring things up a little more won’t make things much worse.
D.C. Sessions @5 brought up a point that I think is essential in this discussion.
My father was diagnosis with prostate cancer at 70. I believe the general guidelines would have been against surgery. However, he and his doctor had a long discussion about my father’s excellent health and fitness, the demonstrated longevity in his family, and the risks and benefits of the different courses of action. The doctor made recommendations and allowed my father to make the final decision to go with the aggressive treatment.
On the other hand, I have a thyroid nodule that is technically over the 1 cm threshold for biopsy by fine needle aspiration, that my endocrinologist has been monitoring for 15 years. She knows all of the details of my case and we have discussed whether I should get the test or not. We have decided to watch and wait before doing any invasive testing that could lead to a false positive. The nodule has been stable for 15 years, so even if it is cancerous, it so slow growing that we have time to see what it does. But, that was a decision that was made with my doctor based on my medical history which a simple guideline cannot address.
If you read articles discussing overscreening, inevitably patient advocates will jump into the comments and hyperventilate about healthcare rationing and “if these guidelines were in place two years ago, I’d be dead right now” and so forth. There’s just a huge amount of resistance in the U.S. to the idea that you can do too much to diagnose and treat disease, that treatment itself can be dangerous, and that you need to balance the risks of treatment against any potential benefit.
It’s really too bad we can’t have a sane conversation about these issues because aside from anything to do with costs, cancer treatment is hell and you don’t want to go through it if you don’t have to. Side effects of chemo and radiation can include heart failure, infertility, memory loss, lymphedema and secondary cancers (which are usually fatal). It’s in everyone’s best interests to limit treatment to those who really need it.
When I worked in an NHS clinical biochemistry lab in the UK we would only do PSA on men with symptoms of prostatitis, not as a general screening test. Many elevated PSAs are due to benign prostate hyperplasia, and as Orac says, many men have prostate tumors that will never cause symptoms, and they would die blissfully unaware of it, unless they get a routine PSA. I had my prostate checked by my doctor today, coincidentally; it took about 30 seconds, didn’t even interrupt our conversation and was entirely painless, in case any of you gentlemen are dithering about getting checked, as I was.
The early detection dilemma reminds me of a similar problem with prenatal screening for Down’s Syndrome. The program I was involved with was for gestational age 15-20 weeks, women with a positive screen were offered amniocentesis and a diagnostic test. A positive diagnosis often left the parents with a very difficult choice between a Down’s Syndrome child, or a late (sometimes very late) termination of the pregnancy.
So new techniques were developed that allowed for earlier screening, using CVS for the diagnostic test. Then you have the problem of detecting embryos with problems that would have spontaneously aborted, which leads to a higher rate of positive screens. That leads to extra expense, more invasive tests with greater risks, anxiety for more parents, and the end result not much better than later screening, in terms of Down’s pregnancies detected.
These things often seem to be somewhat counter-intuitive where cost (not just financial, but anxiety, pain, risk) benefit analyses are concerned. Earlier more sensitive detection you would think would always be a good thing, but it ain’t necessarily so.
Dan Weber – as a NZer who grew up with a public health care system, from watching my fellow Kiwis many of them don’t want to be cut off from the aggressive treatments, if they think there’s some chance they might work. (Of course there are also ones who reject various parts or the whole hog of scientific medicine). It’s very controversial when Pharmac decides not to cover something.
One experiment that was tried in the 1980s to cut healthcare spending was to let doctors know the costs of the medications that they were prescribing, but with the government still covering the costs of whatever was charged. The idea was that if the doctors knew that the two medicines were both as effective they’d chose to prescribe the cheaper one. What actually happened was that drug spending went up as doctors chose to prescribe the more expensive one. The illusion that paying more automatically means better quality is a hard one to dispell. So instead we got Pharmac.
Dan Weber –
I don’t know if this is a symptom or a cause, but I noticed that during the recent health care debate some opponents of a government plan brought up different rates of screening and certain types of treatment in Europe as compared to the US. They meant it as a positive statement about US healthcare. IMO focusing on outcomes is more effective, but there is certainly something in the cultural stew that leads us to accept that “more screening” equals “better” healthcare.
On the one hand we have dedicated physicians working in the trenches fighting to save lives. They know the realistic chances far better than the average medical consumer.
On the other hand, we have a Massive Medical Marketing Machine (plush offices across town from the medical centers) that has hit upon an excellent formula:
Constant stream of Medi-Scare Advertising + Insurance–> Demand for screening tests–>Demands for treatment = Profit$$$$
Calls for balance in our approach are met with stiff resistance because the advertising has been so successful.
Like a poster above, I was curious how colonoscopies fit in this discussion. Just four hours ago, the Kaiser business office called to tell me my scheduled colonoscopy is an elective procedure, not covered by my plan, unless medically indicted (she asked if I was bleeding). Might cost me $500+. I found this very strange. My father died of colon cancer. I had my first scope at ~ 51, and a second at ~61, both within the same Kaiser system, both covered, and now I am 71. Was also told that I need to call Medicare and see what they will cover. Will be some more discussion with customer service tomorrow. My wife and I have been with Kaiser since 1970, plus two kids up to age 19, and we have been generally happy with them.
JoeB, I have three theories.
1. They know that Medicare will cover it so they push you off to a Medicare provider to get it.
2. The science on colonoscopies changed, so getting one was not in your (average) best health.
3. They were just thinking short term.
I’m wondering if the increase in the breast cancer cure rate isn’t related to treating these little spots that wouldn’t progress even without treatment. Is this inflating the cure rate, and “real” cancer isn’t any more curable than it was 20 years ago?
I thought your input on autopsys was interesting; is there any more research about that?
I agree that one of the points left out was the partnering with the patient. The other is the sharing information in an unbiased way. If you tell a patient that a treatment will reduce their risk of death by 50%, they’ll jump at the treatment. If you tell them there is an 85% chance the treatment will either not be needed or be ineffective, then maybe they won’t be so eager, even with the information that it will reduce their risk by 50%. In my experience, the practicing oncologist is less likely to share the latter statistic when discussing adjuvant treatment, because whether conscious or not, there is a strong financial incentive to treat people.
I think not. From my post:
What bothers me about overdiagnosis is not that it occurs, but that information about it is deliberately withheld from women who have been told to get a mammogram. Unless the woman has studied the issue in some depth and is able to sort out the propaganda and BS from the facts she will never know that screening mammography could subject her to the agony of unnecessary cancer treatment.
I’m at the age when a number of acquaintances (all in their 40’s) been through the breast cancer mill. The treatments they described sound like absolute torture. And I can’t help but wonder if these women, who were very fit and thin were simply overdiagnosed.
A great commentary was posted in the BMJ about this issue – please see: http://www.bmj.com/cgi/eletters/340/mar23_1/c1241#234667
It’s time to make sure that everyone considering screening knows all the facts.
Dear Interested Observers,
I am writing to you all as a 51 year old with early stage breast cancer. I detected a different feeling inside my right breast when getting into highly contorted yoga positions which essentially involved my entire body weight resting on one breast or the other plus a loss in rotation on the same side in my highly mobile shoulders. Two GP’s felt the area and found nothing.
I took myself off for a mammogram which detected an abnormality. I have had mammograms every two years since my early 40’s [10 years before recommendation] due to female relative with b/c.
Dense breast tissue meant I was already accustomed to being called back for more mammograms, however when I got the call back this time I knew it would be more serious this time around. It was.
They did a total of around 14 mammograms, then an ultrasound and then a needle core biopsy [6 of them]under a local aneasthetic. All one the same day. As the day progressed, all the other recalled women drifted off after being cleared except for me and one other woman. You could cut the air with a knife. Suddenly the staff commenced being extra solicitous. Not a good sign.
The surgeon was called that same day to review the mammograms and ultrasound. I had an appointment two days hence in his office to officially receive the results of the biopsy – but I could tell from their dememour what it would be.
Two days later invasive cancer was confirmed but at a very, very early stage – around 6mm only. I had a wide local excision [lumpectomy] the following week.I instructed the surgeon to “go for it” and take out much more than the recommended 1-2mm margins. I did not want to be going back in for more surgery simply because of conservative cutting. I also had one sentinel node removed at the same time – it was cleared for cancer while I was under general anaesthetic so no other nodes more removed. My tissue encasing the tumour was sent off for more intense pathological analysis.
This is where my story gets interesting in terms of treatment versus overtreatment.
My refined diagnosis based on finely sliced and analysed tissue was a rare form of cancer called Tubular, which in some cirles is not even within the formal definition of cancer. There was a tiny portion – less than 5% – with DCIS – also controversial because of its low status as a pre- cancerous, non-cancer or cancer [depending on who you talk to]. I was node negative. The cancer was extremely also extremely slow growing – the least aggressive status one could have. Due to non-conservative cutting I had 11-12mm clear margins [huge in cancer terms].
I got on to Adjuvant! the US cancer website to work out my survival and other stats. The result was so amazingly positive I thought I had made inputting errors.
I later attended the meeting with the Professor Oncologist who inputted the same histopathogy data and my personal info like age into Adjuvent! and hey presto, he stats matched mine.
He then declined to offer me any chemo and/or hormone therapy because he said:
– 5/100 women with my condition would die within 10 years;
– 4/5 of those women would die for non-cancer reasons eg., heart attack, car accident etc;
– the 1/100 who would die from breast cancer could have a local recurrence, an ipsilateral recurrence or a distant recurrence which could be based on many factors realted or unrelated to the initial cancer diagnosis;
– importantly, if he treated me aggressively with the chemo and hormones, the ONLY benefit I would get is 30% of 1% ie., around 0.033% boost to my survival BUT the treatments were associated with a 4-6% mortality and morbidity on their own account.You can do the math. To gain a 0.033% increase in survival I would be risking a 4-6% death or disability.
In other words, the “treatment”for my form of cancer was much more likley to damage me than doing nothing.
His words ringing in my ears were “” you have a trivial cancer. Don’t let this ruin your life. The biggest danger facing you now is not the cancer but over treatment.”
He recommended solid follow up and monitoring. He foreshadowed no radiation either but hastened to add that was a decision for me and the radiation specialists.
Last week I went for my Radiation Oncologist apppointment. I was examined and questioned by a the Intern who announced to me my case had been discussed at their full meeting as a case study. This didn’t surprise me as I knew there were so many reasons not to radiate me that it would pose them some interesting questions.
What she said next did surprise – we all recommended you receive full radiation cycle on your whole breast.
My jaw dropped – she noticed and asked why I was surprised and I told her some people might think full blast radiation was drastic to someone like me with “trivial cancer.” She toddles off to confer with the great man. For more than half an hour.
I was then summonsed in and again told yet again the “team” had met, discussed my case and recommended full breast irradiation for the full 6 weeks with a one week boost. I feel like I was being presented with a radiation fait acompli and being made to appear unreasonable, argumentative or even churlish in querying their considered opinion.
I am certain most women faced with all that full weight of consensus would fold and simply not probe any further and submit themselves to radiaton. However I have been exposed to group think phenomena in my working life and know its dynamics as well as being well aware of defensive medicine due to fear from eg., litigation. I decided to question him to try and elicit the REAL reason why they made this recommendation.
Getting to the real or operative reason about why this team has decided on this recommendation was a hurcluean task taking up far longer than it needed to.
I wanted hard stats not words.
I noticed the Radiation Oncologist had a print out of Adjuvent! beside him so I asked him for the hard stats from that.
He told me generally women with my type of cancer had an 8% risk, but my personal stats made it 5%. I had to ask for clarification – risk of what? Most women would assume he was referring to death.
When I pressed for clarification I found it was NOT death at all but a 5% risk of cancer recurring in the same breast in the next 10 years. Something I had already been through and coped with and could cope with again it it happened.
I then had to press to find out okay 5% risk of a local recurrence in the same breast in 10 years – how does scortched earth radiation improve those on those pretty decent stats.
I get another 3% improvement.
So I go from a 5% risk of local recurrence in 10 years to a 2% risk.
I then had to ask lots and lots of questions about morbidity associated with radiation – keeping in mind the Oncologist Professor had primed me about the mortality or morbidity associated with over treatment causing me more harm than doing nothing.
What I found most fascinating was how the language he used twisted and turned trying to evade my ever more pointed and direct questions from me about radiation side effects.
I was told radiation would lead to ‘pinking’of the breast, then’suntanning’and the worst that could happen was called ‘blistering’.
His lack of precision and evasiveness made me even more determined to get to the bottom of these terms.
I find medical people deliberately underplay all sorts of things to suit their conveniene and not patients [pain being one of them] and fudge the true facts to lull you into a false sense of security.
When I said the only ‘blisters’I ever had were little bubble blisters from a match burn on the end of my finger so was he talking about little ones like that? He said they could be bigger. Could be bigger? Hmm. Like how big? Well huge was the final answer. Bascially the entire breast and more. For a year or years in bad cases!
Then I said you see this stuff all the time but I don’t so your version of what a ‘blister’is and mine may be totally different so could I please see a photo of an average radiation caused ‘blister’and a bad one, because some can weep fluid, get infected and be full of puss, etc. Guess what? Immediately I asked to see actual photos his language to describe this changes – he’d using the word “Ã¼lceration.” now.
I am 100% certain the word “ulceration” would never have been revealed to me, except I kept pushing for precise descriptions and when he realised I was determined to see pictures, he only then started using what to me what is likely to be the more accurate term! None of which inspired any trust or confidence in him.
How can you possibly trust the recommendations of someone lying by omission and doctoring the facts to this extent?
I then said I was extremely interested in the reasons why his team recommended so strongly I have full breast irradiaton when the only benefit to me was a measly 3% and I could spend a couple of years battling side effects – especially the skin ones as I have a long history of slow healing and suseptibility to skin infections.
The only two things I could get out of him as reasons for their recommendation were:
1. my relative young age [51 going on 52] and
2. his radiaology team has lots of or an unusual amount of vacancies in their dairies in a few weeks time!
Needless to say, you know which Ã³perative’ reasoning I suspected was the main one in recommending me for full blast radiation.
These radiation people are nuts!
I asked the Radiation Oncologist the following question – is it true that if I go ahead with this radiation for my low grade cancer with excellent prognosis even without further treatment, if another cancer does recur in my right breast, thats it.I cannot have a second round of radiaton. So if I get a worse cancer in my breast a second time, radiation is not an option so it will probably mean a full mastectomy – he said yes.
So what they were recommending I do was to waste my single shot at radiation on this trivial cancer!
I am now seriously considering having no radiation treatment at all.
I am 51 – I have a 5% chance of local recurrence in next 10 years. I can closely monitor my breasts from now on and if something comes back, the close monitoring means I can get it early again. I therefore retain all future treatment options of lumpectomy with or without radiation and with or without adjuvent therapies, or mastectomy and whatever.
If I accept the radiation teams recommendation now, I know I will have lots of really bad morbidity from it which will take years and years to heal, I can’t be radiated again, it significantly limits my future options should cancer recur in the same breast and all I get for all that misery is lousy 3% boost in stats.
I say it again – these Radiation people are nuts!
The previous poster reminds me of what was recommended for my mom.
After a suspicious mammogram on her (also dense) breasts, she had a needle core biopsy, which revealed “possible pre-cancerous” results.
It was recommended she remove at least 1/3 of that breast.
She was already confined to a locked assisted living facility, with dementia so severe she needed assistance feeding, dressing, and bathing.
Fortunately, I found another doctor (head of clinic at the local hospital) who recommended doing nothing given her advanced dementia.
Which is what we did.
5 years ago i had a breast tumor (it was not found by mammogram as it was behind the nipple) -found by needle biopsy–and it was (estrogen receptive ductile invasive about 3 cms ) and I had it removed by mastectomy and had a sentinel node removal as 6 lympth nodes were involved .
dr said it was stage 2 so then I underwent chemo and taxol and herceptin.
I have been on arimadex since then.
my mother and aunt and grandfather all died from cancer and 2 of them had refused all treatment offered,
BUT would I refuse it NOW IF it came back.
NO I WOULDNT.
having had friends who did face a reoccurance bravely and who DID undergo treatment AGAIN and who are doing FINE now, I’d have to say I sure would again save my life.
The worst thing about chemo actually IVE found is the memory loss it took from me.I was very focused before this on details. Was it horrible and all that– yes but IT saved my life.
Im here BECAUSE they took that tumor OUT and chemo is trying to keep it away from my blood system.
Its a trade off
BUT make sure YOU know THAT
you have NO choice BUT to treat it when you decide THIS.
I’m just finding this post this evening, but it’s a terrific discussion about a serious concern of mine.I have been a fan girl for Dr Esserman for a long time.In my blog I decry celebrities like Martina Navratilova fear-mongering over DCIS. Over-treatment carries real risk for patients! along with all its public health implications.
When patients & doctors consider cost/benefit analysis in treatment decisions, too little emphasis is placed on “cost” to the patient’s well being. The 51-year-old Christine, above, explains very well the potential for side effects that are a legitimate part of her deliberation. Adjuvant! has its limits, as she notes.