Macro vs. Micro

There are few decisions, few things in life, which are “every single time, 100% guaranteed” right courses of action. Almost every decision has risks and benefits, upsides and downsides. That’s just the way things are.

It’s a no-brainer that seat-belts save lives, right? But they also may take lives in certain instances. A few years ago on Oprah, there was a family whose young daughter was decapitated by a seat belt when the vehicle crashed. My Grandma probably survived a wreck which totaled her car because she wasn’t wearing a lap belt. She ended up with a broken pelvis, but because she only had a shoulder belt on (one of those automatic seat belts that required manually latching the lap belt, which she did not do), when she pulled out into oncoming traffic, and the car smashed into her, she had enough leeway in the shoulder-belt that the force of the wreck pushed her out of her seat and towards the other side of the car instead of crushing her in the driver’s seat. But my father was undoubtedly killed in a car wreck because he did not wear his seat belt. On balance, seat belts save many more lives than they could possibly be blamed for taking.

Often, a certain decision will be the right or best course for the majority of people, although a minority might either be hurt or harmed in some way. The recent change in recommendation for mammograms is a perfect example of this. The new recommendation is that women younger than 50 not have mammograms at all, and that women 50-74 have mammograms only every other year. ACOG disagrees, finding fault with the science or method of study on which the new recommendation was founded, reiterating their support for annual mammograms for women aged 50-74, and annual or biennial mammograms for women in their 40s. [But we’ll say that ACOG is wrong, and the USPSTF is right, for the sake of argument.] The reasoning behind the new recommendations is that a lot of women are being exposed to a lot of radiation by way of mammograms; some cancers are not detected by these mammograms anyway; some cancers that are detected are slow-growing or are actually mild or not life- or health-threatening, but there is the urge to treat even these cancers aggressively, which may cause a lot of pain and suffering; many “false positives” (or other cancer “scares”) along with much unfounded fear is being endured by healthy women; and many healthy women are undergoing painful procedures such as biopsies (or even mastectomies) because of the test results which may be wrong or inconclusive.

The first news I had of the change in recommendation was from a Christian news source that was decrying the changes, pointing to the fact that there would be some younger women who would not have these breast X-rays done, who would actually have breast cancer, and would die since they did not get early detection nor early treatment. This news organization treated the recommendations in a negative light, taking the tone that women would die from following the new as opposed to the old recommendations, and that this was not right or good, because life is precious and valuable, so every effort should be made to conserve life. Macro vs. micro — the big picture vs. the small picture. Yes, it’s possible, perhaps even probable, that a few women in their 40s might die from breast cancer that might have been detected and treated earlier, were they to have regular mammograms. But there are women who come down with breast cancer in their 30s — why not screen all 30-year-olds as well? Is it not possible for women even in their 20s to get breast cancer — why not screen them as well? Are their lives not worth saving? Is not their life as valuable?

But at what cost? How many women might be exposed to enough radiation from mammograms as to give them fatal cancer? How many women are going to be given life-altering mastectomies (particularly unnecessarily)? At what point do the above negatives and risks outweigh the positives?

A similar argument was made some time ago on some birth blog, in which the blogger pointed out that if such-and-such recommendations were carried out, something like 38,000 women would have to have a C-section in order to save the life of one baby under X circumstances or with X disease. Naturally, a woman whose baby had that condition responded (not very happy), because she took the statement to mean that the blogger was saying that her child wasn’t worth the sacrifice. Obviously, that’s not what anybody was saying. That statement was not intended to be personal — a “micro” look, but rather a “macro” look at the broad situation… but it was personal to that particular woman, because she was affected personally by it.That’s the “little” picture.

The big picture is looking at groups of people who will be affected by a certain policy or procedure. Mammographies for all women which will greatly increase milder negative outcomes (the pain of the procedure, the costs involved, the false positives, etc.) and potentially slightly increase the major negative outcomes (increased risk of cancer, etc.) vs. mammographies for fewer women, knowing that a tiny percentage of women will be severely adversely affected. As soon as the recommendations came out, women who had breast cancer at a young age came out of the woodwork to tell their stories of early detection and treatment which saved their lives. These stories are obviously compelling. But equally compelling would be stories of women who endured the hell of a false diagnosis, going through (perhaps) unnecessary mastectomies and chemotherapy with months of sickness and recovery time, and believing they were going to die, or worse, actually dying from a complication of an unnecessary surgery, or dying from an infection due to being in a weakened state from chemotherapy.

The point of these types of discussions is not to say that one person’s life or health is more valuable than another’s; but just to try to figure out what is best for the population as a whole. In the above example of “38,000 C-sections to save the life of one baby” — there is a cost involved in 38,000 C-sections — certainly a monetary cost, but also a cost in the lives and health of the women undergoing C-sections, as any major surgery has potentially fatal complications both in the short-term and the long-term; plus long-term health implications for the mother and potentially fatal complications for future babies. Recently on some blog, I read about a woman who died several years following a C-section, as a result of the C-section, due to some sort of bowel problem. Adhesions are a common problem after any surgery including C-sections, and they may cause bowel and other problems (including pain, sometimes severe); and C-sections certainly increase the risk of future complications to the mother and any future pregnancy she has, with the risk increasing exponentially with every additional C-section. I remember reading some time ago (though perhaps not in a medical journal or study) that the typical rate of maternal mortality associated with a vaginal birth is somewhere around 2/100,000, while the mortality rate associated with C-section is either 5 or 6 times that. Assuming that these facts are correct, the MMR for C-sections is 10-12/100,000, or about 1/10,000. So, if 38,000 C-sections are necessary to save the life of one baby (in that example), it may be that 3-4 women would die. Plus, 38,000 women would be put at risk of future complications that may threaten or take their life, or they may have a problem in a future pregnancy that could take the life of that baby, or themselves. For instance, the risk of placental problems like accreta or increta or placenta previa (and possibly placental abruption, but I can’t remember off the top of my head) increases with a single C-section and increases exponentially with every additional C-section. With placenta accreta or increta, the placenta grows into or through the wall of the uterus, often necessitating a hysterectomy; and all of these placental problems increase the risk of maternal blood loss, which can be problematic and even potentially life-threatening if steps are not quickly taken. Rare, perhaps, but possible. While the woman in the above case could say that it would certainly be worth 38,000 C-sections to save the life of her baby… is that what is really best for the population as a whole? We save the life of one baby, but take the lives of 3 women within 6 weeks of the birth; plus potentially more, years down the road, either as a direct result of the surgery like the woman with bowel problems, or indirectly like a future pregnancy problem due to a uterine scar; plus rob many other women of their possibility of future childbearing (increased risk of hysterectomy); plus the increased risk of miscarriage and fetal death due to a scarred uterus. And there is evidence to suggest that babies born by C-section unnecessarily (which would be the case in 37,999 C-sections, in this example), are more likely to have problems such as more NICU admissions, longer NICU stays, increased risk of childhood asthma, etc. Some people point the finger at C-sections for a whole boat-load of problems including things like an increased risk of learning disabilities, autism, etc., but I don’t know if that is necessarily accurate. What if 1% of babies born by unnecesarean have asthma that they wouldn’t have had, had they been born vaginally; and of that number, 1% will have such severe asthma that they will likely die from an asthma attack (or some sort of lung infection, or something) before they reach the age of 5 or 10? That’s a small number, but it’s still 3-4 children, which is far more than the number of babies saved (1) due to the level of unnecessary C-sections (38,000). And if the rate of these other complications (some life-threatening; others not) is also increased, then you have a higher health and potentially a higher life cost as a result of trying to save the life of that one baby.

Is that one baby not worth saving? Most certainly! Every baby is worth saving! Every life should be saved if possible. But… it’s not always possible, and sometimes there are unintended consequences. I’m not arguing that some lives are worth more than others; or that some people should be allowed to die so that others can live. But I’m pointing out the necessary problems that occur when you look at only one side of the equation and not the other. If there were no “human costs” involved in mammography (increased radiation, false negatives, unnecessary painful biopsies, etc.), then I would not necessarily have a problem were there to be a recommendation to screen every woman from the age of 16 or 18 or whatever. It certainly wouldn’t be “cost effective” — there would undoubtedly be millions or billions of dollars spent on mammograms to find 1 woman in her 20s and 3 women in their 30s and 100 women in their 40s who had cancer and save them. If there were no human costs involved in a C-section, it would likewise be not “cost effective” but still worth doing if it would save lives. I’m frugal, but you can’t put a cost on human life (although “bean counters” make a pretty good effort at it!). However, it is possible, as I pointed out in my above example, for there to be more lives lost by a “conservative approach” and an attempt to save every life, than there will be lives gained. This is not to diminish the value of the life lost; but to place a value on all lives.

Looking only at the “little picture,” you see that some lives will undoubtedly be lost by following one approach, and most people (including myself) draw back in horror at the thought of callously saying, “Eh… big deal — one life — it doesn’t matter.” No — that life is valuable too! But looking at the “big picture,” you see that — as things stand now — there may be a much higher cost in both human life and health, in attempting to save every life that is threatened by a certain disease or anomaly. There are still plenty of situations where there are risks and benefits both of action and non-action. We can say (sometimes) which is better in the big picture; but that does not mean that by following “the safest route for most” that everyone will be saved. Just like there are instances in which seat-belts actually take lives, instead of saving them.

In the case of a 37-year-old woman who dies of breast cancer, we can say, “If she had just had a mammogram, it might have been caught in time,” and that might be true. But for every younger woman whose life might be saved, it’s possible that two other lives would be lost and ten or a hundred or a thousand might undergo painful and unnecessary procedures — procedures which might end up harming her health and well-being for the rest of her life. And these women’s lives and health are also important.

To sum up, this is why informed consent and patient choice is so important. You don’t want a person coming back and saying, “If I had only known that that was a possibility, I would have made a different choice”; nor do you want someone coming back and saying, “I was forced to undergo a C-section, or I was not allowed to choose a C-section, and look what happened.” Although these recommendations on mammography have been made, younger women can still choose to have mammograms, if they want to, so if they want to expose themselves to the risks which the USPSTF has said are unnecessary, nobody’s stopping them. But we also need to keep trying to further refine our technology and procedures and knowledge so that we can reduce the number of unnecessary procedures while maximizing the number of lives saved. For instance, fingerprint patterns can indicate a higher risk of developing breast cancer, with no exposure to radiation. Maybe other advances will be made in the near future, that will reduce the risks, but keep the benefits.

I like these videos

One of these women is reducing her risk of breast cancer…

h/t Wonderfully Made Bellies and Babies

and

Would you eat in here?

h/t Baby Dust Diaries

Why you might not want to get a mammogram…

Of course the obvious reason is that they hurt. (I’ve heard this from other sources — I have not yet submitted my double-Ds to it, and don’t intend to until I’m 40… if then.) But my cousin’s experience highlights another reason. She found a lump in her breast, and they did an ultrasound of it instead of a mammogram. She’s just 35 so she hasn’t had a mammogram yet, but this was the second lump she’d found (the first was benign). She had a large cyst in her breast, which would have been squished and possibly would have… (there are probably some technical terms for this, but I’m just going on what my mom said her sister said that my cousin said) broken the cyst and/or made it spread.

I’ve heard some people being concerned about mammograms for this reason — that it may compress the breast and squeeze the cancer in such a way as to make it spread and make it harder to get all of it; but I’m pretty sure this cyst was benign, like the first lump. Still, it needs to come out, and since she didn’t have a mammogram, it will make it easier to get it out in one piece. Other people don’t like mammograms for breast cancer because, after all, they use X-rays which are known to be cancer-causing. It does seem stupid to me to use a cancer-causing procedure in trying to prevent cancer, but I know that it is standard practice, and may be the most accurate means that we currently have.

Still, it would be good to ask your doctor about other options, including an ultrasound, to get an image of the breast. I vote for that, simply because it’s less painful. You may end up needing a mammogram to be most sure or most accurate, but in some instances ultrasound is a perfectly valid alternative.

C-sections and Mastectomies

No, not saying there is a link between the two — I’m just drawing an analogy.

Since I have many posts decrying the outrageous C-section rate today, and draw attention to the fact that an ever-increasing number of C-sections are unnecessary, and talk about how women many times have negative feelings towards having had a C-section (especially an unnecessarean), I’ve gotten a few comments from women who have had C-sections who take exception to what they read into what I said. Many of them feel as if they need to justify their C-sections, as if I think that since some C-sections are unnecessary that all C-sections are unnecessary. Many also think that I must think that they are poor mothers for having had C-sections instead of giving birth vaginally. Nothing could be further from the truth!

On to the analogy, which I hope will make things crystal clear.

Many women have mastectomies in the United States every year. A few women choose to have their breasts removed for no other reason than a fear of breast cancer — perhaps some of these have a family history of breast cancer. Most women who have mastectomies do so because they already have cancer, and it is clear that removing their breasts will save their lives or at least give them a better chance of living. But there are undoubtedly some women who have had mastectomies done in error — just as my friend I mentioned the other day was incorrectly diagnosed with a very rare type of cancer on his leg and he never had cancer at all. Does the fact that some mastectomies save lives give any consolation to women who had their breasts removed for a wrong diagnosis?

I’m sure many of you are inwardly cringeing at the idea of having a mastectomy in error. It’s not a surgery to be taken lightly — although I’ve not done research into it, it seems dreadfully painful with a long recovery time, an increased possibility of infection, a body forever scarred, not to mention the fact that most women who have mastectomies will endure chemotherapy which also wreaks untold havoc on the body. We take some comfort in the fact that such lab errors are (we hope and assume, anyway!) blessedly rare; yet it is the rarity which helps strengthen the horror of it, because it is not a common and everyday occurrence. When it happens, it is regrettable and may possibly even end up in the news, while other regrettable things may never be mentioned because they happen all the time. But what if there were a high false-positive rate in a test for breast cancer, and half of the women who had mastectomies due to a positive diagnosis found out later that the test was wrong, and they never had cancer at all, and had their breasts removed because of a lab error? Would the fact that half the mastectomies performed each day in the United States were unnecessary make the problem seem better or worse? We would become inured to it, I daresay, just as people who live in a war zone for years just become used to the bombs and grenades and death. But don’t you think that if it were the case that half of the women who had this disfiguring surgery had it performed unnecessarily should be headline news, even if it were a commonplace occurrence? So why isn’t the unnecessarily high C-section rate not receiving more news coverage?

Let’s imagine a scene in which three women meet — one still has her breasts, another had a necessary mastectomy, and the third just found out that her mastectomy was done in error. Would you expect the women who had mastectomies to think that the first woman thought she was better simply because she still had her breasts? Do you think the woman who had the necessary mastectomy would feel like she had to justify her surgery to the other two? Do you think that the woman who had the unnecessary surgery should feel better about it because “some mastectomies are necessary”? I didn’t think so.

Instead, what I imagine is that the unscarred one would be, yes, glad she still had her breasts, but not puffed up in her own imagination about her status; and she would be sympathetic towards both the other women, and perhaps even extremely angry on behalf of the woman who had had her breasts removed unnecessarily. This wouldn’t in any way diminish the status of the woman who had had the necessary mastectomy, and she would be glad for her sake that the surgery was available to save her life. The woman who had had the necessary mastectomy would also be glad for the availability of the surgery, but would be angry on behalf of the woman who had had it unnecessarily, and might even join her in a campaign to reduce the number of unnecesary mastectomies, although hers had been necessary. And the woman who had had the unnecessary mastectomy would be probably extremely angry on her own behalf, and everyone would understand that, and no one would try to say, “Well, just be grateful that you’re healthy,” because everyone would realize that going through an unnecessary and painful surgery is worth getting upset about — no matter how many painful surgeries are actually necessary.

So, why is it that women who have had unnecessary surgeries are just told to be happy that they have a healthy baby, as if it didn’t matter that they are permanently scarred, had part of their femininity unnecessarily ripped away from them, and endured an unnecessary and painful surgery with a much higher potential for complications than normal birth?

With Child, With Cancer

This was an extremely interesting, though long, article. Fortunately, having cancer while being pregnant is rare, so it’s not something that most women have to worry about; but when you do have to worry about it, then what are your options?

Prior to reading this, I assumed that most women could not undergo chemotherapy while pregnant. I have heard of numerous women being advised to have an abortion (even on a viable or near-viable baby); and I’ve heard of women who have refused abortion, choosing instead to delay chemo which might save their life, to give their babies a better chance at life. One woman in my community did that. When she was about 24 weeks along, she was diagnosed with a rare but aggressive form of cancer, and chose to have the baby at 30 weeks (which has a high survival rate) and then begin chemo. She died a few weeks after her son’s birth.

In this article, it does mention that some drugs are not given during pregnancy — some of the women had milder forms of chemo while pregnant, and then once they had the baby (either at a normal time, or an early induction or C-section), chemo was kicked up to the very hazardous drugs. That there are any chemo drugs that don’t seriously mess up the baby shocked me; but at least one doctor (mentioned in the article), has compiled a lot of research on cases of pregnant women with cancer, and actually found that the birth defect rate might be as low as 5%, although other studies put it at 10-15%. But, the rate of survival with an abortion is 0, so for women who want to try, it is a reasonable option.

Consider your options. Obviously, there will be a lot of things to consider, if you are a pregnant woman with cancer — the type of cancer, how aggresive it is, what stage it is, how far along you are, etc. But it is important to know all of your options. One of the things that stood out to me, as I read the aforementioned article, is that so many doctors automatically counsel a pregnant woman to undergo an abortion. They may not know the latest research. Some older research suggested that when pregnant women with cancer have abortions, the survival rate is better; newer research seems to indicate the opposite — whether because pregnant women have something to live for, or because the grief and guilt over the abortion (even if they considered it necessary at the time) depressed them. It is a recognized fact that people who “think positive” tend to get better and stay healthier than those who are sad, so this is a possibility.

So, before you make these very tough decisions, do your own research, because your doctor may not have the time or inclination to be up on the latest findings.

Inflammatory Breast Cancer

This is not your “normal” breast cancer. It doesn’t show up in a mammogram. It doesn’t have lumps. Here’s a link to the blog I read, which also has the youtube video of a segment that aired on a local TV news show.

I don’t exist…

Because I was conceived several years after doctors were supposed to stop prescribing DES, I’ve been told that I can’t possibly have been exposed. But everything I’ve read says definitively that a cockscomb cervix only occurs with in utero DES exposure. So I’m an impossibility. I don’t exist… because I can’t exist. Not in the world that is obstetrics and gynecology, anyway. Not with “in the box” thinking. My existence (or, more specifically, the existence of my abnormal cervix) puts doctors on the horns of a terrible dilemma: either one of their own stupidly and/or arrogantly prescribed drugs which were shown not to work and also to be harmful, or I am the only case of a cockscomb cervix that was not caused by DES. Both of these are impossible in their minds, so they don’t even try to reconcile the two. They do not attempt an explanation. They just say that I couldn’t have been exposed–I’m too young. But they can’t find another example. What I want is proof that a cockscomb cervix can form in the absence of DES. Until then, I’m going with the simplest and easiest explanation: they screwed up. Doctors blindly accepted what other doctors said. They blindly accepted what drug reps said. Some continued to prescribe it even when they were warned by the FDA to stop. But this behavior by doctors didn’t stop in 1977. They’re still doing it. Not with DES, but with other drugs and procedures. They’re playing with fire, but it’s we who get burned.

Accept nothing. Believe nothing. Question everything.

Here is the last letter I received from Fran Howell, Executive Director of DES Action:

You are not alone – there are other DES Daughters who were born after 1971 – and so you share in common with them the problem of having doctors tell you it isn’t possible. Most doctors dismiss DES exposure as not a concern – even for those who were born in the timeframe and clearly were exposed. That’s going to be a burden for you throughout your life. [A woman from my Independent Childbirth Educators email group told me of a case she was personally familiar with, of a girl born in 1974 who had been exposed to DES in utero. She died of adenocarcinoma when she was 12. She was born 3 years after the warning was issued — not a ban — a warning. We are here. We exist. We want answers. We want recognition.]

The increased breast cancer risk for DES Daughters starts at age 40 – so you’ve got a few years to calm your fears. I do understand about not wanting to go through the experience. None of us like it. But even if you weren’t exposed – as a woman you have a risk for the disease so at some point you’d have to make peace with your concerns and get a mammogram.

One thing newly diagnosed DES Daughters do is wonder if everything is related to exposure….

I’ve certainly fulfilled this last statement! Everywhere I look, I see evidence of DES exposure. I think about how an entire generation of women had greater problems with infertility and pregnancy, thanks to DES. I wonder how these abnormalities have affected the way OBs practice. Do they accept as normal a certain rate of infertility, ectopic pregnancy, miscarriage, multiple miscarriage, stillbirth, preterm labor, premature birth, etc.? All of these things can be caused by or exacerbated by DES exposure. Are they operating under the impression of a false normal? Are they fearing a certain rate of pregnancy problems, and working to prevent them… when they’re not normal? and they may not be able to be fixed?

One of the things that really irritated me in doing some of the initial DES research is the number of times I read that while DES can cause a whole hat-full of reproductive-tract disorders in both DES sons and daughters, they frequently dismissed the concerns about female infertility by saying, “But most of these problems should be able to be corrected with fertility treatments,” or “most women will have success…” or some such wording. They just don’t get it, do they? I read the infertility blogs on wordpress. I tag-surf for it. I hear the struggles, the anger, the depression, the cries of “why me??” echoing from every part of the blogosphere. And these insensitive docs just blithely dismiss it as not a big problem! I read about women who have had to have rounds and rounds and rounds of various treatments–Clomid, Gonal F, IVF, IUI–plus some names and abbreviations that I don’t even know what they stand for nor what they mean. I read their difficulties when they wonder how in the world they’re going to be able to afford their fertility treatments, but they don’t want to give up just because of money. So, yeah, given unlimited time and resources and money, most women will eventually be able to conceive. But who has that? And then, there are the stories of multiple miscarriages, “chemical” pregnancies, stillbirths, and so on. Stuff I don’t even want to imagine, but I know is a daily reality to a lot of women.

I have reason to believe my oldest sister was also exposed to DES in utero; which means there is a strong possibility that our other sister who is between us in age was also exposed. If my mom was prescribed DES-laden prenatal vitamins when she was pregnant with me in 1976, five years after the warning to stop prescribing DES to pregnant women, why wouldn’t she have been given them two years earlier? My oldest sister had three miscarriages — they made her have that many before they would refer her to a specialist to see what the problem was. She was one of the fortunate ones — her problem was easily diagnosed and repaired. She had a septated uterus, or a septum in her uterus — in plain English, her uterus didn’t develop normally, leaving a little “wall” down the middle of it that shouldn’t have been there. Some DES-exposed babies developed bicornate uteri — “two horns” — which also frequently causes miscarriages, infertility, and preterm birth. It is my understanding that a septum is a much milder form of this abnormality, but I could be mistaken. Even though she was born in 1972, so could have been conceived prior to the FDA warning, it was never suggested to her that her abnormal uterus was possibly due to DES exposure. I guess it’s a good thing she didn’t die of adenocarcinoma or cervical cancer before she found out!

If DES was given a “free pass” and was “innocent until proven guilty” (and prescribed at least occasionally even beyond that), it just makes me wonder what “wonder drugs” are out there now, or in the near future, that will be given to millions of unsuspecting people, and cause who-knows-what problems with them. Or with their children. Or with their children.

Yet some people seem to make fun of natural-birth advocates — those of us whose goal it is to give birth without any drugs. Most of us also tend to stay away from drugs at other times, or use them much more rarely than the general population. Some people mock us as if we’re too stupid to know that medicine can help. That’s not it. We’re just smart enough to know that medicine can sometimes hurt. We weigh the risk very carefully. The known risks of epidural are low. But it’s possible that there are unknown risks. Epidurals have benefits too. Whether the known benefits outweigh the known and unknown risks is something for you to decide. What you don’t know CAN hurt you. What you don’t take can’t.

I have an increased risk of breast cancer, vaginal cancer, cervical cancer, ectopic pregnancy, stillbirth, preterm birth, preterm labor, premature rupture of membranes, and am automatically considered “high risk” for pregnancy (which I’m glad I didn’t know about before I had my two safe, natural, uncomplicated home births) due to a prenatal vitamin my mother took 32 years ago. What are you taking that you don’t know about?