Reading about Elizabeth Edwards' breast cancer recurrence brings my own patients to mind. On any given day in my practice, the greatest number of office visits were women (and the occasional man) with breast problems. The majority of those who saw me for cancer appear to have been cured, but many weren't. It took a long time for me not to see them as personal failures, and in some sense I think I still do. For everyone involved, there's enough pain to go around. My patients came to me wanting cure, expecting it. My hope was to be a part of that. Yet no matter how expeditiously, how skillfully I did my job, cure did not always result. That it wasn't my fault (had I delayed diagnosis, done the wrong operation, failed to coordinate surgery with other needed treatments, it would have been) didn't change the fact that I saw myself -- and assumed the patient did, too -- as having let them down.
When such a public figure deals with serious illness, people learn a lot. One important fact that I've heard countless times in the past couple of days is that breast cancer that has spread to bone is still breast cancer, not bone cancer. We name cancers by their organ of origin, and it's important because breast cancer, for example, behaves as breast cancer no matter where it ends up. In other words, the response of a type of cancer to particular treatment depends more on what kind of tumor it is, than on where it's found. Mrs. Edwards' treatment options depend on the type of breast cancer she has (there are several variants, with different general behaviors and responses to drugs: in particular, some respond to hormone manipulations and others don't). Cancers, however, can change: it's a laboratory of "unnatural" selection. Any cancer is made up of millions of cells, not all of which are equally responsive to particular treatment. You may wipe out all those that are, leaving others that aren't. That's one reason why most treatments combine several drugs.
I suppose it's just semantics, but I object slightly to the notion that her cancer has "returned." It never left. And that gets back to my opening statement about guilt. Our ability to cure cancer depends on a fortuitous coming together of happenstance and science. If the woman looking back at me with fear in her eyes has had her cancer discovered before it's spread from her breast, or if the cells that have escaped are few in number and sensitive to the drugs she'll get, she will be cured. If that's not the case, then treatment will most likely prolong life -- often very significantly -- but it won't wipe out the tumor. It will stay there, somewhere.
On NBC news last night, when Brian Williams reported on Elizabeth Edwards, he said (probably not an exact quote) "her cancer is back, and it's malignant." By definition, cancer is malignant. The ability to spread is, more than any other criterion, what distinguishes a malignant tumor from a benign one. "Tumor" means a group of cells -- the patient's own formerly normal cells -- that have undergone a change such that they grow at a faster rate than necessary to replace the natural turnover of their cell type. Skin cells, for example, die off at a certain rate: that's why we flake. New cells are constantly formed to replace them. If a cell changes -- mutates -- randomly, or as a result of sun exposure, or for whatever reason, in such a way as to increase the rate of division, all its "daughter" cells will carry on that change. A tumor is the result. If slow-growing, without the ability to insinuate itself into surrounding tissues -- getting into blood vessels or lymphatics, or locally infiltrating like a weed -- we call it a benign tumor. If it includes those dangerous abilities, it's malignant.
The important thing is this: it's all about timing. No one really knows -- particularly for any given person's tumor -- how much time is needed from the time the first cell or cells change to the point at which they slip beyond local control. But most people agree -- for "solid" tumors anyway (as opposed to tumors of the blood cells) -- that that window exists. You read reports that mammograms don't save lives, that breast self-exam doesn't help. In this, I'm a denier. I can rationalize that there's poor standardization of those studies among various types of mammograms and of the quality of interpretation; I can say self-exam is done better by some than others. Whatever the reason, I've never been convinced by those nay-saying studies. I've had too many patients who came to me because they found a lump, or because their routine mammogram discovered something, and who went on to be cured, for me ever to tell women to abandon regular self-exam and screening Xrays. And I've wondered from the beginning whether Elizabeth Edwards put off seeking attention because she had other things on her mind.
13 comments:
What an excellent and helpful post. I learned a number of things. Thank you.
Mimi
"My hope was to be a part of that."
As usual, you show the humanity of your frustrations, and I hold your desire to help in the highest regard. I have my own sad rant going on at my blog over those who have forgotten what it's like to be human. How I wish you were my mom's doc...
i like your conclusion at the end. i continue to recommend sbe as well. most of the illnesses i diagnose are first found by patients.
lynn:
I'm lucky. He was my mom's doc. I've had 23 more years (and counting) to make her crazy.
I'm struck by the lack of optimism in most of the media reports; once upon a time, bone mets were indicative of an excruciatingly painful but hopefully short trip to the grave. The New Reality in treating MBC is just as the good doctor says; that at least some women can be effectively treated over very long periods of time and not see disease progression, even with distant mets. As a result of people not knowing the New Reality, I think there are women out there who fear a diagnosis of breast cancer so much that they live in constant denial and don't take proactive steps.
I wish the mass media would have found an expert or two (Larry Norton or Eric Winer would be my two faves) who would go on and say something along the lines of "Look, you're right, we haven't got a cure for metastatic breast cancer, but we don't have a cure for high blood pressure, Type II diabetes or lots of other chronic conditions, either. What we have now are well-tolerated therapies that target cancer cells and starve them, block them from talking to their buddies, keep them from getting new blood supplies and treat the symptoms of the disease. Women are living for *decades* after diagnosis with cancer that has spread beyond the breast, leading full, active, pain-free lives. We don't have a cure yet; we have a pause button that can keep women alive until we find a cure."
I've always been a little...uncomfortable...with the approach of some BC advocacy groups about the focus on a "cure" - yes, we need a cure for breast cancer. I'm the last guy to suggest otherwise. It's a massive undertaking, though, and right now the focus needs to be on expanding access to screening and optimized treatment to create a pool of long-term survivors who are continuing to enjoy life while we find a "cure".
We have an aunt who was diagnosed with breast CA last September, which had spread to her neck and groin.
Yes, she did have warnings and symptoms that she hoped would go away. her sister had a breast removed from the disease and so she was familiar but didn't say anything to anyone.
I have to admit that when I heard it had gone through the lymphatic system and that there wasn't enough skin to suture her back up post breast removal - I thought she had a death sentence.
Amazingly, with chemo and radiation the have reversed the CA as evidenced by recent tests. She will be meeting with the surgeon Tuesday to discuss breast surgery.
This is all wonderful news and I admittedly, am surprised. She is doing well and is optimistic. :)
I saw that same surgeon (per my OBGYN's request) back in October to have a breast lump that came back with a good report from both a mammo and an ultrasound. It unnerved me that she wanted me to do that 4 mos later, but she is just extra cautious with lumps.
I was fine. I told him I was not good about doing monthly self exams and he said that studies show it doesn't make any difference whether or not women do self breast exams. Sounded good to me. :)
However, Dr. Schwab - it sure can't hurt. :)
I've had too many patients who came to me because they found a lump, or because their routine mammogram discovered something, and who went on to be cured, for me ever to tell women to abandon regular self-exam and screening Xrays.
The thing is, you don't really know if some of those women who got to be cured had a non-progressive tumors to begin with, do you?
Mind you, I do believe that in some cases early detection makes a difference, but are you denying that overdiagnosis exists? There are studies that say it is small, but then there are studies that estimate it to be fairly large. So for every woman it is a trade-off - a chance that her life will be saved vs the higher chance to become diagnosed with cancer and suffer side effects of what could have been unnecessary treatment.
In either case, it is wrong to assign guilt to a woman who is sick; one can never say that in her particular case early detection would've made a difference.
I make recommendations, and explain why. People are free to take them or not. In addition, I think I'm more able than some to decide how to avoid over-diagnosis. And under, for that matter. That's why some people are called specialists.
Nor was I blaming Mrs Edwards, if that's what you took from my last sentence. On the other hand, there are many people who choose to ignore symtoms and signs of many diseases, delaying diagnosis and making things worse for themselves. "Blame" isn't the issue. Trying to educate people in order to help them help themselves -- that's the issue.
I don't think mamos save lives, nor do I think self exams save lives. When you find a lump, you have to follow through. Action can save lives. I also think that sometimes people have had enough battles. If a person is walking through fire and fighting another fight, and then a lump is found and the doc wants to remove it, and you are like, ok, I lost count at 20 surgeries and you wanna what??? You tend to look at that and don't walk, run. If you won't die right now, it doesn't really matter. You tend to continue putting your energy in the the battle that will immedaitely save your life, or not. Maybe she had something like that going on?? I don't know. That's HER business. I'm just saying, in the end, it's your body, your life and everyone has to do what's right for them, it really does not matter what a doc or anyone else thinks.
yes, everybody has to do what is right for them.
and, i wonder why mrs. edwards chose to wait to have a lump examined and perhaps what other instances she did not make herself a priority...
In addition, I think I'm more able than some to decide how to avoid over-diagnosis. And under, for that matter. That's why some people are called specialists.
This is interesting. And here I thought that there is currently no science that can say for sure which tumors would progress. And then there is incidence data that shows that significantly more cancer is diagnosed in screened women, and that unscreened women never seem to catch up. This is discussed in zillion papers. Also, I guess the experts in Malmo study weren't good enough because the recent published review of data showed overdiagnosis of 10% (more than twice as much if one fixed their math - as pointed in rapid responses to their BMJ article). Same with NIH website that clearly mentions overdiagnosis risk on their website. They must be all wrong.
Nor was I blaming Mrs Edwards, if that's what you took from my last sentence.
I didn't mean your post exactly - I am sorry if this came out this way. It's just that your words brought some memories. When Mrs Edwards' desease was first announced in 2004, there were zillion articles, letters to the editors calling her irresponsible, stupid, you name it. So much so, that a well-known radiologist (Dr Leonard Berlin) felt compelled to write a reply to one such letter - I believe it was in Chicago Tribune - about respecting woman's choice not to have mammograms. I cannot find the link to his reply any more - it must've been removed - but many of the arguments came from his article in Imaging Economics.
Kathleen - I am with you here, although I do believe that there is a mortality reduction with mammograms, although not nearly as much as many women believe. The trouble it this reduction comes at a price of false positives, overdiagnosis and longer morbidity in cases where early detection doesn't help. Whether it worth it is up to an individual to decide.
It's true that there is no way, based on xray image, to predict exactly how a given tumor will behave. However, when you see the typical "stellate" picture, that's pretty much by definition an invasive lesion. There's greater controversy about calcifications, which is a way to pick up cancers at a very early (and theoretically nearly 100% curable stage). Some of the calcium patterns lead to biopsy of what turn out to be benign lesions. Others find cancerous cells, the future behavior of which is unknown. Thus, the issue of xray leading to "unnecessary" biopsy, and to diagnosis of cancer that may or may not have behaved badly. It's also true that we remove skin lesions because we're not sure if they're malignant or not, many of which turn out to be innocent. We're not omniscient. And yet.... and yet. Having treated many hundreds of women with breast cancer, having seen many with small but clearly invasive and therefore certainly dangerous tumors, and having seen women die who refused certain treatments or who'd put off seeking attention earlier, I believe strongly in regular screening. In saying I'm able to avoid overdiagnosis better than some, I mean I'm willing to (and have not regretted) watching certain lesions without biopsy, given the right circumstances. We all do the best we can. We all live with knowing we're far from perfect, either in diagnosis or treatment. Medicine differs from "pure" science in that there is and will likely always be a place for a coming together of science, experience, instinct and method that transcends data that are often incomplete and conflicting. Maybe we'll see in a few decades purely robotic diagnosis of all disease. Until then, docs will differ in some things. One can only hope the differences are based on reasonable criteria.
So where does this talk about screening leave women like me? I was diagnosed with stage II BC at 38 - never had a mammogram because of my age and the fact that I had no family history.
On youngsurvival.org, you can meet dozens and dozens of women under 40 with stage II, III, and IV breast cancer. Some had family histories. The majority did not. Almost none are diagnosed at stage I.
Many of us feel guilty that we didn't find our cancers earlier. Everytime the media speaks of BC as curable, I think about whichever of our young members has entered hospice that week. When it talks about how easy it is to catch BC early, I can't help but feel guilty and highly insulted.
Writing about the benefits of prolonging life is findeif you're referring to middle or late aged women - the current majority of women with BC. But the disease seems to be becoming an epidemic among young women, many with young families.
My oncology nurse said that just five or six years ago, their office saw maybe a dozen BC patients diagnosed under the age of 40. Now it's becoming a major portion of their practice.
For this growing population of patients, better palpative care isn't enough. We need both a cure and a better understanding of the cause of the disease.
Everyone tells me I have a great prognosis, as I was a stage II cancer. But my gut tells me that my disease, which was multi-focal, highly aggressive (grade 9/9), and only weakly ER positive, might not be as easy to control as grandma millie's stage II cancer.
I'm scared, and none of the pink ribbons you can tie around Elizabeth Edwards are going to make me feel any better.
Dr. Schwab,
I stumbled into a John Edwards rally last night (he was speaking at the same school that my daughter was having an off-season basketball game in), and I wanted to let you know that he started off by saying that Elizabeth is doing very well.
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