I realize that being in academic medicine at a tertiary care center often produces the "ivory tower" syndrome, but occasionally it is brought home to me that the way we practice surgery here often differs considerably from how surgery is practiced "in the trenches." This time around, it was a study about how often surgeons referred women whose breast cancers are large enough to require a mastectomy to treat to plastic surgeons for a discussion of reconstruction options prior to the mastectomy. The answer was: Not nearly often enough. See for yourself:
ANN ARBOR, Mich. -- Forty-four percent of surgeons do not refer the majority of their breast cancer patients to a plastic surgeon prior to the initial surgery when the woman is choosing her treatment course, according to a new study by researchers at the University of Michigan Comprehensive Cancer Center.
The finding may help explain the consistently low number of women who pursue breast reconstruction after mastectomy.
The researchers surveyed 365 surgeons, asking them how often they referred patients considering a mastectomy to a plastic surgeon before performing the mastectomy. The surgeons were identified from a population-based database of women in the Detroit and Los Angeles metropolitan areas who had been treated for breast cancer.
The study found 44 percent of the surgeons referred fewer than a quarter of their patients to a plastic surgeon prior to the mastectomy. Only 24 percent of surgeons referred three-quarters or more of their patients for reconstruction.
The study appears March 26 in the online edition of the journal Cancer.
Here's the abstract, published online, before the print version:
BACKGROUND.
General surgeons' attitudes toward breast reconstruction may affect referrals to plastic surgeons. The propensity to refer to plastic surgeons prior to surgical treatment decisions for breast cancer varies markedly across general surgeons and is associated with receipt of reconstruction. In this study, the authors used data from a large physician survey to examine factors associated with general surgeons' propensity to refer breast cancer patients to plastic surgeons prior to mastectomy.METHODS.
The authors surveyed all attending general surgeons (N = 456 surgeons) from a population-based sample of breast cancer patients who were diagnosed in Detroit and Los Angeles during 2002 (N = 1844 patients), with a surgeon response rate of 80%. The dependent variable was surgeon report of the percentage of their mastectomy patients in the past 2 years who they referred to plastic surgeons prior to initial surgery (referral propensity). Referral propensity was collapsed into 3 categories (<25%, 25-75%, and >75%) and regressed on the following covariates using logistic regression: Surveillance, Epidemiology, and End Results registry; number of years in clinical practice; surgeons' sex; annual breast surgery volume; and hospital setting.RESULTS.
Only 24% of surgeons referred >75% of their patients to plastic surgeons prior to surgery (high referral propensity). High referral propensity was associated independently with surgeons who were women (odds ratio [OR], 2.3; P = .03), high clinical breast surgery volume (OR, 4.1; P < .01), and working in cancer centers (OR, 2.4; P = .01). High-referral surgeons and low-referral surgeons also had different beliefs about women's preferences for reconstruction, with the low-referral surgeons perceiving more access barriers (cost, availability of plastic surgeons) and a lower patient priority for reconstruction.CONCLUSIONS.
A large proportion of surgeons do not refer breast cancer patients to plastic surgery at the time of surgical decision-making. Surgeons who have a high referral propensity are more likely to be women, to have a high clinical breast volume, and to work in cancer centers. These data support the importance of comanagement through multidisciplinary care models. Women need more opportunities to discuss reconstructive options to make informed surgical treatment decisions about their breast cancer. Cancer 2007. © 2007 American Cancer Society.
It must be the ivory tower syndrome, because I found the results of this study astounding, and unacceptable. I certainly don't hold myself up as any sort of glowing example of what a surgeon who treats breast cancer should be, but I do at least try to refer as close to 100% of my patients with breast cancer who require a mastectomy as possible to a plastic surgeon before the mastectomy to discuss reconstruction options. Immediate reconstruction (reconstruction done at the same operation as the mastectomy, in which the cancer surgeon and the plastic surgeon work in tandem to perform the mastectomy and reconstruction) almost always gives a better, more aesthetically pleasing (or at least acceptable) result that matches the remaining breast the best. Sometimes I'm surprised when it is the woman who says that she is not interested in reconstruction and insists on immediately scheduling surgery. In such cases, it turns out that immediate reconstruction is less important to the patient than it is to me, and I must respect that. However, most of the time, this is not the case, and the age of the patient is no reliable indicator over who will consider reconstruction important and who will not. I've taken care of 70-year-olds who consider reconstruction very important and 40-year-olds who do not. It's an individual choice, but the point is that not having reconstruction should be, as much as possible, the patient's choice, not a default treatment that occurs simply because the surgeon doesn't refer patients to a plastic surgeon.
One of the more disturbing aspects of this study were the reasons given by some of the surgeons:
Many surgeons believed that patients did not undergo reconstruction because of a lack of patient desire. Specifically, 57% of surgeons believed that reconstruction was not important to patients; 64% believed that patients were not interested; and 39% believed that patients were concerned that reconstruction would take too long. However, nearly half of surgeons (46%) reported that patients were concerned about the cost of the procedure.
Reconstruction not important to patients? That's certainly true for a minority of patients, but the majority are usually very interested in some form of reconstruction. Oddly enough, though, this belief did not differs significantly between the low, medium, and high referrers, which means that it's probably not a difference in perception of the importance of breast reconstruction that accounts for the difference between low and high referrer. What did differ was this:
By contrast, there were marked differences across surgeon referral propensity categories in surgeon beliefs related to potential patient access barriers, such as inadequate knowledge (32%, 16%, and 12% for low, moderate, and high referral propensity categories, respectively; P < .001), concerns about cost (58%, 47%, and 22% for low, moderate, and high referral propensity categories, respectively; P < .001), and unavailability of plastic surgeons (30%, 13%, and 8% for low, moderate, and high referral propensity categories, respectively; P < .001). There also were marked differences across propensity referral categories in surgeon beliefs about patient priorities for treatment. In particular, 31%, 13%, and 12% of surgeons in the low, moderate, and high referral propensity categories, respectively (P < .001), believed that patients were too preoccupied with other elements of their cancer therapy to consider reconstruction.
Now we get to the meat of the matter. Even though there was a federal law passed in 1998 mandating that insurance companies cover breast reconstruction procedures, there is still the widespread myth out there among patients that insurance companies do not pay for reconstruction. In fact, they do, although the myth is not entirely without basis in reality, as HMOs and insurance companies often put up barriers to covering reconstructive surgery. Another significant barrier is that, at least in my area, some of the plastic surgeons can affort to cherry pick the very best insurance plans and thus do not belong to many of the common commercial insurance plans that patients carry. Thus, if patients want what I consider to be the best plastic surgeons, they sometimes find themselves in the situation of having to pay out-of-network rates--that is, if their plan allows them to go out of network at all. Thus, part in perception and part in reality, there really are barriers to getting reconstruction done for patients requiring mastectomy, and it is quite possible that the low referrers practice in an area where plastic surgeons aren't as available or where insurance companies produce more hassle about paying for reconstruction, leading to more of a perception that it's more trouble and that it's way down the list of considerations in getting the cancer treated as quickly as possible.
I can see how this can happen, even from my ivory tower. The problem that I run into more than anything else when a patient needs a mastectomy and would like immediate reconstruction is that there are, in essence, no plastic surgeons around who take Medicaid or our state's charity care. A significant fraction of my practice consists of what is so delightfully termed "medically indigent," meaning that they have no health insurance and they qualify for charity care. The problem that comes up with these patients is that, not infrequently, we are unable to find a plastic surgeon willing to take them on because plastic surgeons who accept Medicaid or charity care are rare in our area. This leaves these patients in the unfortunate situation that their mastectomy is covered but their reconstruction is, in practice, not.
There are, of course, legitimate medical reasons for not recommending immediate reconstruction. For example, if a patient's tumor has characteristics that suggest that the patient will need chest wall radiation after mastectomy and that patient, for whatever reason (usually smoking, diabetes, and/or vascular disease) is not a good candidate for a muscle flap using tissue from the abdomen, then immediate reconstruction may not be a good option at all. The reason is that, if a plastic surgeon can't use a muscle flap, the only option remaining is a tissue expander or an implant, and such foreign objects produce notoriously bad cosmetic results if they are radiated. Similarly, if a patient has such an aggressive tumor that waiting a few weeks for the patient to recover sufficiently from a large operation, like the abdominal flap procedure (known as the TRAM flap) before starting chemotherapy would endanger the patient's life, then it's not unreasonable not to do immediate reconstruction.
Of course, none of these legitimate medical contraindications to immediate reconstruction is what seems to be causing the problem of such a low rate of reconstruction after mastectomy. Indeed, the authors conclude:
Our results have important implications for patient care and policy. Prior research suggests that low rates of breast reconstruction reflect unmet need, especially in vulnerable populations. Our findings indicate that there are systematic differences among surgeons with regard to referral to plastic surgeons prior to surgical decisions for patients with breast cancer. Patient decision aids that include information about reconstruction or comanagement of patients through a multidisciplinary approach may improve patient knowledge about all surgical options and aid in this complex decision-making process. Referral to a plastic surgeon prior to initial surgical decision also may influence this decision; for example, women may be more inclined to choose mastectomy with a good understanding of the reconstructive options. However, our results suggest that barriers to comanagement may exist, especially in smaller surgical practices, which may have a more challenging patient mix and limited resources. The acceptance of multidisciplinary breast cancer treatment as a practice model, coupled with advances in breast reconstruction in the past 2 decades, should motivate strategies to enhance the involvement of plastic surgeons in the education and treatment counseling of patients with newly diagnosed breast cancer.
I mostly agree with this, with one grain of salt. It has to be remembered that the lead author of the study is a plastic surgeon, who naturally wants to promote plastic surgery. My other caveat is that a plastic surgeon is probably only necessary in cases where mastectomy is being considered, adding little in cases where breast conserving therapy (lumpectomy) is going to be the treatment. Finally, it must be remembered that these results may not reflect the whole country, as they were obtained from two large urban areas, Detroit and Los Angeles.
What this study boils down to is that there is a definite deficiency in many areas and among many surgeons when it comes to recommending breast reconstruction. Not all of it is due to surgeon attitudes or misunderstanding, but it would appear that too much of it is.
How much extra would it cost?
That's pretty unbelievable. If I were a doctor, I would want to mention it because (for those women that it is important for) it's like a bit of hope. I would imagine that for an oncologist that might be a nice to thing to offer patients once in a while.
My best friend is scheduled for her reconstruction next week. (Finally, after nearly a year of chemo, radiation, and skin stretching!)She can't wait, and I'm excited for her.
I think the process would have been harder for her if she didn't have this light at the end of the tunnel to look forward to. Her doctor referred her to a plastic surgeon almost immediately. She met with him before she even elected for the masectomy, which I think was absolutely the best way to do it.
It's not that getting a new boob makes dealing with all the hairy issues of mortality easier, it doesn't. It makes dealing with the hairy issues of self-esteem and feeling disfigured just a little bit easier.
Not to mention, the prospect of having a new pair of boobs has surprisingly been a pretty good source of jokes for us along the way.
This is only disturbing if one thinks women have some kind of patriotic duty to have two boobs. One might contemplate what role a physician considering whether to refer mastectomy patients to plastic surgeons has in this perception.
Orac, you wrote:
if a patient's tumor has characteristics that suggest that the patient will need chest wall radiation after mastectomy and that patient, for whatever reason (usually smoking, diabetes, and/or vascular disease) is not a good candidate for a muscle flap using tissue from the abdomen, then immediate reconstruction may not be a good option at all.
Given that core biopsy is not always representative of the main lesion, and that intra-operative rapid frozen section is sometimes (if not always) little better (artefacts, limited sample size etc), how can you tell whether a woman with breast cancer has favourable or unfavourable disease without a pathologist examining the mastectomy specimen and excluding nasty surprises (unexpected deep margin involvement etc.) first?
I wonder if, in lauding reconstruction as some sort of gold standard, the literature (the 'ivory tower') is not going for form over function.
Maybe it's just because I've just spent three years training in rural practice where immediate reconstruction (even in a semi-nationalised health service such as Australia has) is simply not an option due to the lack of rural plastic surgeons (and where the women themselves are more likely to push for total mastectomy over lumpectomy-plus-radiotherapy, even though the latter has recently become available where I was). And I am also thinking about third-world surgery, where to think of referring every woman for a discussion on reconstruction is simply living in a dream land - they're probably lucky if they get their operation in the first place.
No, the "gold standard" is not that a woman necessarily undergo immediate reconstruction, but rather that she have the choice to do so if she so desires. It is not the "patriotic duty" of a woman to "have two boobs," as Frumious so quaintly put it. Rather, giving women the choice is the ideal towards which we should strive. Not all women will take that choice, and that's OK.
I also realize that rural areas may not always have access to these sorts of services. Such areas also often don't have access to a lot of services that we consider state of the art, and practitioners in such areas have no choice but to do the best they can with what they have.
I think it's not at all a simple matter; in fact, I've been planning a post on it as well. I completely agree that addressing reconstruction is a mandatory part of the pre-op discussion and planning. I also agree that surgeons' attitudes affect the path a woman may eventually take. I don't think a visit to a plastic surgeon is necessarily required preoperatively, nor do I think that the "low-referring" surgeons are ipso facto derelict. I happen to have a bias against immediate reconstruction for reasons I consider important, although I willingly participated in many. I think I'll indeed write about it in the future. I don't claim unassailable wisdom -- in fact I'd predict assailing. But it's a matter worth plenty of discussion.
Neither do I. However, I do think that the offer of a referral to a plastic surgeon preoperatively should be made wherever possible and especially whenever the patient might be a candidate for immediate reconstruction. Heck, I've had plastic surgeons tell patients that perhaps they should wait for reconstruction for reasons that I hadn't taken into consideration.
Also, things evolve; the pendulum is swinging towards immediate reconstruction these days, for good reasons. Your difference of opinion with me might be a generational thing.
This study surprises me too, if only because my own experience was so different. Far from not being advised about the possibility of reconstruction, my surgeon pushed it at me as if it were inconceivable that a rational person could possibly decline; I wound up getting two wasteful plastic surgery consults, for a procedure I had no intention of accepting, just to satisfy her nerves about it.
Which is a roundabout way of bringing up a point that I do think is important, even if it's the opposite of the one this study makes. Some surgeons may not be doing enough to advise women who'd really like to have reconstructive surgery of the options, but there are certainly others who go overboard in the opposite direction. I've never been sorry that I didn't have reconstruction done -- there are a few evening dresses I rather regret not being able to wear now, but it's nothing when balanced against the backaches I no longer have -- and I know women who did choose reconstruction and have regretted it. It's not a no-brainer of a decision, even if you have ideal insurance and excellent surgeons willing to work with you.
I still can't understand why anyone would accept that muscle-flap procedure. I mean, yes, excellent cosmetic results, but I like my abdominal tissue where it is, thank you very much. And I find it difficult to entirely believe that it isn't more useful there than it would be providing a nonfunctional lump on my chest.
If a patient refuses a referral, I will briefly try to talk her into it, but I won't badger if her decision remains firm. It's the opportunity to choose that's more important than the actual choice that is made.
And I do appreciate the need to make sure a patient understands her options, to the extent possible. But, here's the thing I don't get (and I ask out of genuine desire to know, and not with any intent to harass you about it): If your patient says she's not interested, why do you try to talk her into it at all? I mean, assuming that your discussions with her indicate that she does understand that reconstruction won't increase her risk of recurrance, that it may have excellent cosmetic results? Or is that simply a level of understanding you don't normally see in a patient before she's had the plastic surgery consult?
To support Phoebe, from my experience, folks from a more rural or farm background seemed less interested in reconstruction OR conservation therapy (lumpectomy and radiation). City Slickers seemed more attuned to conservation therapy and or reconstruction. So Phoebe, were you raised with cows and chickens, or taxis and bus exhaust?
And I've seen all sorts of sad imposition upon a patient from a surgeon who wasn't "culturally sensitive" to the patient's needs or desires. I'd be wary of swinging too hard one way or the other. Reconstruction doesn't add any to survival, but for some, it enhances quality of life.
Frumious wrote:
Wow Frumious. What an insightful observation.
Frankly, it is pretty crass of you to imply that women wanting reconstructive surgery after a masectomy is somehow vain or silly, which I assume is what you mean by 'patriotic'. It is neither. It's actually pretty traumatic for some people to have parts of their body surgically removed.
I know it seems unbelievable, but it's true.
If I had a biopsy come back positive for breast cancer, the three things I would most be concerned about first are: 3)Is this an aggressive type of cancer, 2)Has it spread to my lymph nodes and 3)will I need chemotherapy. For me, the decision to have reconstructive surgery would have to wait.
I think that a surgeon should broach this subject with a great deal of care, since there's no telling which side of the spectrum a woman will fall on with regard to this decision.
I have to wonder, how many women get reconstruction for their own reasons, and how many get it because they're afraid that the man in their lives will consider them unattractive without two breasts.
Epador, that's interesting to know. I had no clue about the distribution, and if I'd had to guess, I'd have guessed that it would be the other way 'round. I'm a city girl, as it happens, but I'm used to being eccentric.
For what it may be worth, my guess would have been based by both my own reaction and the reaction I've seen from friends to the peculiar culture of breast cancer. There are all these odd expectations that swirl around the diagnosis, most of which seem to go something like, "We understand that the most precious aspect of yourself, your femininity, is profoundly threatened by this horrible news. But, never fear! You can compensate for it! We know you'll display your femininity by becoming completely hysterical and unable to cope with anything related to actual medical information, and also obsessed with your appearance! We love you, Feminine Girl -- here, have something pink!!"
Seriously, it was incredibly creepy. And not just to me. But my guess would have been that it would be us cynical bicoastal folks who'd be more likely to have a problem with it, and therefore more likely to rebel. I'm oddly pleased to know that my stereotyping would have been wrong.
I live in a major urban area. My surgeon (a female breast specialist) referred me to one plastic surgeon. Both recommended pediculed TRAM recon. I asked about the free flap (DIEP) proceedure, a suggestion that was poo-pooed by both doctors. I didn't get a second opinion - a mistake I will regret for the rest of my life.
In the whirwind of a cancer diagnosis, it is very difficult to properly weigh reconstruction options. You're wondering if you're going to live, choosing oncologists and researching chemo therapy options, and all within the span of a few short and depressing weeks.
I wish I could turn back the clock. The chemo and surgeries are over, but I'll have to live with the cost of my reconstruction for the rest of my life. I have constant back pain from the loss of the muscle, and am in physical therapy to strengthen my one remaining abdominal muscle. And for nothing. I could have gone to a major surgery center and had the free flap. But my surgeon's didn't do it, and clearly didn't want to lose my business.
I spend more time mourning the loss of my muscle than the loss of my breast. The result is not as good as I thought it would be, and I was pushed into an obsolete surgery.
So, yes, patients should get referrals to plastic surgerons. But they should also be given the option of the most current surgeries.
BTW: it's no fun being a breast cancer patient sitting in a plastic surgeon's office. All the other women there are getting nose jobs, tummy tucks and botox. The lighting is subdued and there's lots of advertisement. It feels like you're at a spa or salon, and you feel incredibly out of place. The PS treats you like a charity case, and doesn't spend more than a few minutes with you. The receptionist looks at you with pity. For your follow up, you're a sick, bald freak in a room full of glamour queens. I'd rather be at the oncologists office anyday.
Phoebe, you're not the only one who thinks the peculiar breast cancer culture is creepy. Just looking at it from the outside, it appears like once a woman is diagnosed, she gets to join this really fantastic sisterhood, that will welcome her with open arms and allow her to be the very best Feminine Girl she could ever want to be.
To be fair, I'm sure that support groups and fundraising are very important to a lot of patients, and I don't want to knock anyone who finds getting involved in these things and finds them rewarding.
I know a woman who is unhappy with the implants she got after having a double mastectomy. From what I can gather, she was pushed into having the double mastectomy, then pushed into getting the implants, all while she was undergoing chemotherapy. She also felt that her general surgeon was pressuring her to only see one particular oncologist and only one particular plastic surgeon.
On top of this, her family doctor was pressuring her to not see ANY of the above three doctors, because these three were in a competing hospital network. Family doctor said that the woman HAD to go to the hospital network that was associated with her practice. (BTW, all these doctors and hospitals accepted the woman's insurance, so it wasn't an insurance issue.)
Laura, I just wanted to stop by the thread one last time to tell you how sorry I am, not that sympathy from a stranger does you a damned bit of good.
But what happened to you is precisely the sort of thing that makes me question the value of directing women toward immediate reconstruction at all. I do understand the appeal of not putting someone under general more often than necessary, and that there may be something to be gained by the whole surgical team being there to manage the case together. But those benefits strike me as being relatively marginal, while the value of going without reconstruction for a while and seeing whether that works for you is potentially tremendous. Mastectomy is a relatively minor procedure, after all, particularly if you don't need extensive axillary node dissection (I had my bilateral mastectomies at noon, was on a conference call at seven that evening, and had checked out of the hospital by nine that same evening because it was clear I didn't need to be there). There's not that much risk, as these things go, and not a lot by way of long-term physical side effects. Add reconstruction and you're talking about much more surgery, a much more difficult recovery, and a nontrivial risk of very substantial side effects down the road. Why encourage women to take those risks for a cosmetic result, rather than encourage us to see whether the world is really that awful when you have a flat chest? What's the more rational risk? It's not as if reconstruction can't be done later, if it turns out you really want it after all.
Renee, it's good to know I'm not the only one. I too remind myself that the advocacy types mean well, and that the support groups are important to some patients. And I don't want to knock anything that makes treatment easier for people. But on the other hand, well, I worry about situations like the one your friend found herself in. It's just hard to know how many people make decisions that aren't really what they'd have chosen if they hadn't been under pressure to conform to a particularly odd set of social norms about what it means to be a woman.
phoebe,
Thanks for the comment.
I just want to clarify that I wanted immediate reconstruction, I'm just sorry that I picked that particular reconstruction (pediculed TRAM). In hindsite, I really should have opted for no recon at that time because I didn't really have enough information to make a truly educated choice. If I could do it over again, I would have done a bilateral instead of single mascectomy, and would have done the DIEP proceedure.
Laura