As odd as it seems, my timing in posting about removing chemotherapy ports yesterday was eerily coincidental.
I've alluded to this before, but I'm most definitely not a big fan of John Edwards and would never vote for him for President. That being said, I can't help but feel for him and, even more so, his wife Elizabeth, given their announcement today that Elizabeth's breast cancer has recurred (see here as well), with a biopsy proving that it has metastasized to a rib. Neither she nor he nor their family deserve this, nor does any patient with cancer. I've gotten a few e-mails asking what this means, what Mrs. Edwards' chances are. For example, here's one:
This is a pretty noteworthy news item, and I haven't seen anyone else on scienceblogs really do a post specifically about it. Meanwhile, the news I've seen on the subject is throwing around little fragments of vague, garbled medical information in a frankly confusing manner-- for example saying that the fact the cancer recurred means it is now "treatable but incurable", or that the cancer has "retreated into the bone" and that that is somehow a good thing, but not really explaining why any of this is the case or how the underlying medical science for these statements work (i.e. why are they saying recurred cancer is not curable?).
I'm a long-time reader of your blog, and your posts on the science of cancer have invariably been clear and informative; and in fact yours is frankly the only blog I can think of which can be specifically said to have a focus on cancer treatment. It's not a big deal, but I was wondering if you'd consider trying a post on what is happening to Elizabeth Edwards and maybe interpreting some of these little media-science snippets in the news stories.
Well, I'm flattered, and I'll try to answer, and do it more succinctly than my usual long-winded style. My usual disclaimer applies: I haven't taken care of Mrs. Edwards and have no direct knowledge of her case. What follows is a general discussion of patients who present as she did, with my information coming from news reports.
First off, saying that a cancer is "treatable but not curable" is oncologist-speak that means exactly that: Mrs. Edwards' breast cancer is now stage IV, and stage IV breast cancer is not curable. She will die either of or with her disease, much more likely the former. The only question is how much time she has left. Her tumor is, however, eminently treatable, and her survival can be prolonged and quality of life improved by various therapies.
Bone happens to be one of the most common organs to which breast cancer metastasizes, the others being liver, lung, and brain. How much time Mrs. Edwards has left depends a lot on what her true presentation is. Not all stage IV breast cancer is created equal. For example, isolated bone metastases, with no disease anywhere else, tend to have an indolent course compared to other stage IV disease. The five year survival for all comers with metastatic breast cancer is in the 20% range, with a median survival of around 16-24 months. However, for isolated, low volume bone disease, which is what Mrs. Edwards appears to have, the prognosis, while still grim in the long term, is usually better than that. For such patients, I've seen a couple of series with median survivals as high as 48 months reported, although that's at the high end. Probably a reasonable expectation for a single isolated small skeletal metastasis is for a five-year survival rate of around 30-40%, maybe even slightly better than that. Prognosis also depends upon the disease-free interval between conclusion of her primary treatment and recurrence. Rapid recurrence portends a worse prognosis. Since Mrs. Edwards was diagnosed in late 2004, her disease-free interval is on the order of two years, which is fairly typical and probably doesn't suggest an unusually virulent tumor. (Unfortunately, it's virulent enough.) In any case, we don't know enough to determine for sure whether Mrs. Edwards will have the better prognosis of a patient with isolated bone metastasis or the worse prognosis of a woman with metastases to other organs, because it has been reported that she had abnormalities in her lung as well that were too small to characterize but sound mildly suspicious. If these turn out to be lung metastases, then Mrs. Edwards' prognosis is likely to be considerably worse than if her rib is the only site of disease.
It should also be remembered through this, however, that metastatic breast cancer has a long "tail" on its survival curve. The numbers above are medians and averages. There are some patients who lives several years with metastatic disease, sometimes even considerably longer than 10 years. (One also has to remember that, because the above are medians, half will do worse than the estimates.) A very few even approach 20 years, but this is rare. These women, of course, are a small minority, but there does definitely appear to be a definable subset of women with less aggressive, more indolent disease who can do surprisingly well for a surprisingly long time. Their disease never goes away, but they seem to do alright.
The treatment of metastatic breast cancer is palliative in nature. It used to be fairly nihilistic 20-30 years ago, when expected survival was shorter, but now that more recent treatments have significantly increased expected survival times, how metastatic breast cancer is treated is evolving. First, local treatment usually consists of radiation therapy if the bone metastasis is causing pain. Systemic therapy usually consists of estrogen-blocking drugs. However, this would depend on whether or not Mrs. Edwards was already taking Tamoxifen at the time she recurred. She likely would have been if her original tumor were estrogen receptor-positive because the usual course of Tamoxifen is 5 years. Obviously, if the tumor grew while she was on Tamoxifen, that would be of concern. Newer estrogen blocking drugs, such as the aromatase inhibitors, are also a consideration and indeed appear to be supplanting Tamoxifen in many ways in the treatment of breast cancer. Other drugs that are often used are biphosphonates to lessen the likelihood of pathological fractures due to tumor. Chemotherapy is usually reserved as the last line, for when other modalities have failed or when rapid palliation is needed for pain or other symptoms caused by tumors impinging on nerves or other structures.
In the end, as for all patients, it's impossible to predict how long Mrs. Edwards has, especially since she has breast cancer. We can cite median survivals and expected five year survival percentages all day, but breast cancer tends to be so variable that making anything other than the vaguest prediction is fraught with uncertainty. It is quite difficult to extrapolate population data to any single patient in making such predictions. I'm hoping that she's one of the small subset of women who manage to do quite well and lives another decade or more. Even if she is, what we can predict, assuming that she has bone metastases only, is that, sadly, were Edwards to succeed in his Presidential bid, it would be more likely than not that Mrs. Edwards would not make it through his first term, and it would be highly unlikely that she would survive through a second Edwards term. I hate to be so blunt about it, but that's the reality of her situation, and the situation would be considerably more bleak if she does turn out to have lung metastases, where her estimated survival would be in the range of 18-36 months. Be that as it may, if she does have indolent disease, campaigning over the next 10 months or so until the Democratic primaries is unlikely to cause her harm and may even help her maintain the positive mental attitude that she will need to handle the medical trials that are to come. After that, there's a decent, but not as good, chance that she will continue to do well through a general election campaign, if it were to come to that. After that, it becomes very hard to predict, and there is always the sad possibility to be considered that Mrs. Edwards may turn out not to be one of the fortunate ones who do well and live a long time with this disease.
Here's hoping that's not the case.
ADDENDUM: The Cheerful Oncologist has more, explaining the factors that need to be taken into consideration to decide on what treatment she needs and make estimates about her prognosis. His explanations of the variables involved should help you understand that, when we as doctors waffle about making predictions, it's not because we're dissembling. It's because there's so much variability among patients in this disease.
An excellent post, and setting it out very clearly.
I would suggest one or two changes, wording only,to make it a little more intelligible to the lay public (who, after all, this blog is designed to educate). Us oncologists, pathologists, etc. are used to quoting survival times in months, but 48 months is (after a quick bit of mental arithmetic) four years, and I've never understood (nor would many laypersons) why 48 months is stated when four (calendar) years would suffice.
Many people might not know what dissembling is either.
PS: Out of interest, would anyone resect a single bone metastasis?
Thank you.
stupid question, perhaps, but I'm not an oncologist- to follow up on Justin ... why would anyone not resect this, given that it's just in one rib, and a rib isn't exactly a femur, in terms of "gotta have all of those"?
would that improve long-term outcome? if not, why not?
Re: resecting single bone metastasis.
That's a very controversial issue, and, oddly enough, while reading about other things the other day I came across a paper from a few years ago that argued that, in select cases, resection was indicated (they were talking primarily about metastases to the sternum) and could prolong life considerably, but to me the paper suffered from serious selection bias.
The short answer is: usually no, because there's no good evidence that resecting a solitary bone metastasis prolongs survival and because other treatments have gotten much better at slowing down progression of the disease. Also, radiation is usually quite good for a solitary lesion. The long answer is that resection is usually not done with curative intent but it is not infrequently needed for palliation. For instance, if there is a bone metastasis in the femur, sometimes surgery will be needed to stave off a pathologic fracture from the metastasis. Similarly, for metastases to the spine, surgery is sometimes needed to prevent or relieve spinal cord compression.
The answer to the resection question gives the "what" (no good evidence it enhances survival) but not the "why." As a layperson, I'm curious whether much is known about the answer to the question, "Why doesn't cutting out the bad thing help?"
Dr. Orac should come clean and confess that the reason he wouldn't vote for Edwards under any circumstances is because the latter made his fortune as a plaintiffs attorney suing doctors for alleged malpractice.
Thanks, Orac. Your post answered many of my questions, and confirmed my suspicions on her outcome. I just didn't buy that comparison to diabetes, or even heart disease.
This is a good essay by Stephen J. Gould for anyone faced with grim cancer stats
http://www.physics.utoledo.edu/~ljc/median1.htm
Jud -
I'd assume that this is because the presense of one bone metastasis indicates that there are numerous microscopic metastases, so removing just the ones that can be seen isn't going to do a lot of long-term good, and taking a couple of months out of a person's remaining life for the treatment may not be worth it.
Of course, to the non-oncologist such as myself, this brings uo more questions..
(a) If the primary tumor has been removed, where do these mets come from?
(b) If they were present when the primary is removed, is there any way of detecting them?
(c) And why do they take several years to appear?
Thanks for explaining what is going on with the Edwards.
SLC - what are you trying to say? That Orac's reasons for not supporting the Edwards presidential bid have something to do with his estimates of Elizabeth Edwards' survival rate and treatment course? That you even know what those reasons are? That they have any bearing whatsoever on the conversation at hand?
Re Bey
With all due respect to Ms. Bey, my statement relative to Dr. Orac had nothing at all to do with Mrs. Edwards. It is well known that former Senator Edwards made his fortune suing physicians for malpractice (often successfully). Such a calling is unlikely to endear him to physicians of which Dr. Orac is one. Please learn how to read.
SLC,
Your comment is completely irrelevant to the topic discussed in Orac's post. It's simply an attempt to get in a cheap shot about doctors.
SLC:
What is the relationship between Edwards and his wife prognosis from cancer?
Are you so blinded by your ideology?
Re anonimouse
"I've alluded to this before, but I'm most definitely not a big fan of John Edwards and would never vote for him for President."
Above is the opening sentence of Dr. Oracs' comment on the Edwards matter. Since Dr. Orac brought the subject up, I see nothing in any way, shape, form, or regard irrelevant in my comment.
Thanks for the great blog posts about Elizabeth Edwards. I've linked out to your post in my blog (http://www.revolutionhealth.com/blogs/cline/elizabeth-edwards-ca-3132) on Revolution Health's (http://www.revolutionhealth.com/) site. FYI, I'm the cancer center manager.
Thank you for the explanation re Mrs. Edwards prognosis. One cannot help but admire them for the way they are dealing with this; however, since it is just a few days into this new trauma there seems to be a lot of denial which for the time being is helping them cope and carry on. From my viewpoint as a therapist I think this is the best they can ask for at this time. From your remarks it looks like campaigning may be the best thing for her. But I do wonder how long she will feel "fine." Hopefully her faith and positive energy will give her the strengh to carry on for a long time to raise their two young children.
Re Enrique
As a supporter of former Senator Edwards for the Democratic nomination, I would like any reader who might be influenced by Dr. Oracs' negative appraisal to be aware that he may be biased for personal reasons (just so there be no misunderstanding, Dr. Orac, to my knowledge, has never been the subject of a malpractice suit where former Senator Edwards was the plaintiffs' attorney).
SLC-
The subject of the post is the prognosis for recurrent breast cancer, using a currently-publicized case as an example. Are you suggesting that the recurrence statistics and other data given by Orac are unworthy of belief because Orac is a doctor and Edwards sued doctors? How will this information become more valid if, as you recommend, Orac "comes clean and confesses" the political views you attribute to him? Anonimouse is spot on about your motivation.
SLC,
What particular part of Orac's post do you think is biased?
How does Orac's political views relate to the body of the post?
Answer these questions, please, rather than just making assertions that Orac doesn't like John Edwards because he tried malpractice cases and is somehow "biased".
Re DT35 and anonimouse
This is getting rather tedious so let me spell it out carefully.
1. The comment about Dr. Oracs' bias had nothing to do with his analysis of Ms. Edwards condition. I assume that his analysis is absolutely correct and accurate (I have no competence or expertise to think otherwise).
2. The comment was strictly relative to his opening sentence which I will again repeat, "I've alluded to this before, but I'm most definitely not a big fan of John Edwards and would never vote for him for President." I have opined that the reason he would never vote for former Senator Edwards is because of that gentlemans' former employment, namely as a plaintiffs attorney who often sued doctors for alleged malpractice. For anybody who is unable to connect the dots, my position is that Dr. Orac doesn't like lawyers who sue doctors (nor does any other physician). That constitutes bias against a class, since I suspect he is not personally acquainted with former Senator Edwards. Further, I have not seen such a statement from Dr. Orac about any of the other candidates from either party.
SLC,
Thank you for your respectful suggestion that I learn to read. I'll get right on that.
In the meantime, however, I am curious as to why you seem to feel that Orac might be incapable of separating his political preferences from his professional assessments. Could it be, perhaps, because you seem unable to?
FWIW, I am not a supporter of Edwards' candidacy either and I'm not even a doctor!
Okay, I agree that Orac did, at least, open the door a crack to the political discussion. I, personally, disagree with his view of Mr. Edwards, but I have gained a good deal of respect for Orac's overall objectivity. Since he has clearly chosen to leave the political topic aside, let's respect that and move on.
As a breast cancer survivor of three years, I would like to address the previous inquiry about why removing the tumor doesn't cure everything. In my case I had a small primary tumor but cancer was present in nine of 11 lymph nodes removed. This means the cancer got into my bloodstream but we don't know where it went. I did go through chemo and radiation but I know it can still come back. Had I not had the tumor removed then it surely would have killed me.
I was 34 at the time of diagnosis and am 37 now.
Obviously, you've never seen my negative opinions of Barack Obama and Hillary Clinton, both of whom I hold in nearly equally low esteem. I've also expressed my disappointment in John McCain in the past for his pandering to the religious right, although the last time I recall posting that was quite a while ago and may have been before I joined ScienceBlogs. Don't worry. It's easy to have missed them, because I seldom write about politics and usually when it comes to the current crop of candidates it's usually been brief snide little comments buried in large posts that may not have even mentioned their names. The last time I even mentioned them, I believe I said something along the lines of how little I thought of all the current crop of Democratic candidates and singled out one as "not being ready for prime time" or something like that. Guess which one I meant. (Hint: It wasn't Edwards.)
Now listen up, because I'm only going to say this once, and quite frankly I do not care sufficiently about what your response might be to argue with you about it:
The sole reason that I mentioned my distaste for Edwards is because I wanted to point out that, even though I don't like him or support him and wouldn't vote for him, even so I wouldn't wish such a calamity as what has happened to his family on anyone and that I sincerely hope that Elizabeth is one of the fortunate ones who lives a long time with a good quality of life with this disease. Period. I would have said something similar had I learned that Laura Bush, for instance, had been diagnosed with the same cancer. My comment had nothing to do with the medical discussion that followed.
It is you who have injected your apparent dislike of doctors and defensiveness about Edwards into a thread where it doesn't belong. (How else am I to interpret your first remark,"Dr. Orac should come clean and confess that the reason he wouldn't vote for Edwards under any circumstances is because the latter made his fortune as a plaintiffs attorney suing doctors for alleged malpractice"), which was utterly unrelated to the meat of the post? Really, even if what you said were 100% true, what possible purpose does it serve to bring it up in such a snarky manner in the comments of this, other than to be an asshole?
None at all, in my opinion.
Even then, if you had only posted once, I would have ignored you, but you then hijacked the thread to harp on the topic after being justifiably criticized by others. I agree with you on one thing. This is getting tedious--because you are making it so. I don't know why you are being such a prick about this, given that you normally don't behave like this, but in this thread it's gotten to the point where I don't care.
You've clearly got a bug up your butt about doctors and malpractice, and I really don't want to hear about it anymore if it's not related to the topic at hand. I don't expect you to apologize for behaving so badly, but I do expect you to stop, at least on this thread. I'm normally very tolerant, even too tolerant, of trolls (yes, you are clearly trolling right now), but even my tolerance has limits.
As a 45-year old patient going through Chemo for a Stage IIA breast cancer, I'm interested in what stage Elizabeth Edwards was, her lymph node status, her treatment and what her survival prognosis was at the time. I've been led to believe that with the aggressive treatment I'm doing my changes for survival to 5-10 years out is 96-98%. I've always assumed I'll have "another" cancer, but I'm hoping it will be in my 60s or 70s, not in my 50s.
Does anyone know about her 2004 cancer information - staging, treatment, etc?
thanks
MET
Not much for me to add to the oncology thing above. An added corollary is that the reason you can get differing opinions from experts is the multitude of variables and options. I admit I breezed through the long post, but I didn't catch any references to biphosphonates used both for active treatment, and being researched into delaying or preventing bone metastases.
Lastly, a single anecdote. I treated a woman complaining of chest wall and back pains several years after her mastectomy. A bone scan was positive in only one rib. The biopsy proven metastasis to a single rib was treated with hydroxydaunorubicin for a protracted time, all the while she continued to complain of musculoskeletal pain. Finally, after four years of continued treatment (I used a low dose infusion regimen and monitored cardiac function regularly), we stopped for a breather. That lasted almost a decade (I left town so I don't know when and if the inevitable recurrence happened). We had to refer her for treatment of her fibromyalgia which had been the source of her musculoskeletal complaints that had led to the rib biopsy in the first place. That got better with exercise and antidepressants. I can conclude that Adriamycin does nothing for fibromyalgia, but it can lead to some impressive remissions in breast cancer.
I think the physicians and laypeople are talking past each other somewhat on the "why not remove the metastases" issue. The key thing to understand is that the alternative to surgery is not ignoring them, it's targeted radiation therapy. Radiation therapy is obviously less invasive, more feasible for multiple areas and appears to be just as good or better than surgery for bone mets, which is why it's now the gold standard for treating them (because they can be so painful).
Morbo said: "The key thing to understand is that the alternative to surgery is not ignoring [bone metastases], it's targeted radiation therapy."
Thanks, that was very helpful.
A couple of comments, coming from a breast medical oncologist.
First, the prognosis for patients with bone-only recurrences is excellent, with most living 5 years or more. In my practice alone, I have 5 bone-only patients living longer than 10 years past their diagnosis with no evidence of progression. Importantly, all of them have hormone-responsive disease, meaning a positive estrogen receptor overexpression in their tumor.
Second, while it would be important to determine the hormone receptor status and HER2 status of a new metastatic lesion (these can be different from those found in the primary lesion), obtaining these from bone biopsies is notoriously unreliable. The processing that the bone has to undergo so that it can be cut to be placed on slides tends to ruin the surface markers that we look for in the laboratory, resulting in a lot of false negatives.
Assuming that Ms. Edwards intially had ER or PR positive disease, I would simply change the hormonal therapy that she had been taking, eg from Tamoxifen to Femara, or from Arimidex or Femara to Aromasin or Faslodex.
At any rate, without knowing all of the details of her history, from what we have heard, she does have a good chance of surviving many years with a good quality of life.
...two in one week now.
I am a 3 1/2 yr survivor. Diagnosed at 34 with Stage III Invasive BC. After bilat mast. and intense chemo... I, like MET above, also wonder what Mrs. Edwards initial diagnosis and treatment were. I cannot find it anywhere. Anyone have this info? It would be very helpful to some of us.
I find the information Dr. Orac gave interesting and to the point. Thank you. I am a 6 year survivor, having intially been diagnosed at the age of 42. I was diagnosed two months ago with extensive skelatal metasis. No one is willing to give even the scientific research results regarding survivial rates. Because of this, and the attitude perpetuated by media and others, my spouse now believes, and has stated "but it's not like you're going to die from this". Previous to that he made this comment at a family function - "You don't die from breast cancer". We were with two breast cancer survivors (including myself) and two people who had lost their wives to breast cancer. Needless to say, it didn't go over too well. He is an educated, professional man who has only heard the positive aspects of recent research and successes, (of which there are many! Thank God) but no one, including the doctors, want to tell you the other possibilities or discuss probability. Because of his misguided beliefs, I am receiving very little support from him - but how can I ask a crippled man to carry me? Thank you for your honesty and solid information.
Energizer Bunny, please accept my silent prayers for you and your family. It brings tears to my eyes as I write this to you. My Husband was shocked by Mrs. Edwards recurrence and said, "I didn't think you could "catch" breast cancer again." CATCH---- what the heck is he talking about! Silly man. Did he really believe that breast cancer is like the chicken pox? You can only get it once? I WISH!
Here is an update on Elizabeth's cancer - it is estrogen-responsive. Would you like to explain to us what that means?
estrogen positive means the tumor depends on estrogen to exist. the treatment is thus to deprive the body of as much estrogen as possible to starve the tumor. I've heard that hers is also progestorin positive & that portends a less aggressive tumor &/or that gives them another 'food' to fiddle with/deprive the tumor of. Femara works in the adrenal gland to limit the post-menopausal woman's body from creating/converting estrogen. Pre-menopausal women who are estrogen positive may have their ovaries removed if they have an aggressive cancer.
for those who are as curious as I about EE's original diag -- what I've gleaned from interviews & other articles, her original tumor was "the size of a half dollar" and she was node negative & slightly estrogen positive. I did not look that up but think that makes her a stage 2, for the tumor size. those of us with breast cancer want to know about recurrences because we pray it won't happen to us. Unfortunately, even a 'good' initial diag doesn't give us a free pass, as Dr Susan Love stated in her "breast book", she had a stage 1, node negative, her2 negative patient who metasticized & died within a year of first diag. BC is extremely variable. My mother has survived almost 30 years with diag'ed metastatic BC. I am 6 months post diagnosis and hope for a similar survival -- but we can't count on it.
I am a survivor of breast cancer. I had a lumpectomy followed by six weeks of radiation. I am now cancer free, and my five years will be up this coming May. Praise God!
I wish the very best for Elizabeth Edwards and admire her courage in standing by her husband as he tries diligently to place well in this upcoming election for President. I shall pray for both of them and will vote for her husband.
I'm 7 1/2 years survivor. Stage 3 so many lymph nodes involved they stop counting after 15. Chest xray at the time revealed nothing. never had a cat or pet or mri till 3 years after diagonsis. Had an mri of the breast and cat scan from the neck to my waist. nothing. I never took tamoxifen either -figured one cancer was enough for me.
6 month chemo - radiation that was it. Quite enough and I have voved never to touch the stuff again!. after 5 years my ono let me go. Shocked by the fact i was still there. Still have my breast and they have cleared up..no mirocalcifications another shock to my ono. He said what are you doing...I started to tell him and he said no never mind I don't want to know...! just keep doing what your doing. So I'm still doing it..progesterone cream, coq 10, balancing my ph. I was E + P- and her 2 +...aggressive so they say. At the time of my diagnosis I was in good health my labs were good so I was told. The doctor couldn't believe I was in such good health except for this cancer thing. I did have pain in my breast same spot for 6 years
the mammograms showed nothing..for years. obgyn thought I was nuts.Finally I got a dimple..now do I have a problem. Actually the pain was bad. When they removed it ..It's Funny the surgeon said my tumor was 6 years old. No history of cancer in the family so I never connected the pain with BC. obgyn said don't worry cancer is painless..ya right.
Oh well I pray for BC patients everyday..for their inner peace and their miracle! Bless all of you