Post Breast Cancer, Happiness Is A Clear Mammogram

I had my mammogram last week. I don't talk about these ahead of time because I don't feel the need to. If I feel the need to, you can bet my blog will be covered in mammogram information.

But even if I don't talk about it, doesn't mean I am not thinking about it. You can bet I was thinking about it. I was convinced that I had a recurrence and I timed my mammogram (for two days before my annual oncologist appointment). I was sure I had a something.

I had already started putting together a plan in my head on how I was going to handle it, tell people, deal with treatment, talk to my oncologist on Friday about it. I was positive.

I can convince myself I am going to die next week if I really try. Anyone who has gone through a cancer diagnosis can easily convince themselves its back. Face it, there is always that little tiny voice in the back of your head that says you know it has come back. It whispers in your ear while you are sleeping, or trying to sleep, in the middle of the night.

But I am so happy that it was clean, nothing exciting to talk about. I talked with my oncologist about it just to be sure. But in the meantime, I am happy.

Those pesky breast cancer screening recommendations

Can I ask who is confused over the 'revised' breast cancer screening guidelines? Or should I just ask who isn't confused? Yes, no, yes, maybe, no one, everyone? How old? Not that young, should be older. Well maybe not. Not for everyone. Wait, oh just test everyone. No only for some people, talk to your doctor. That's a lot of different answers.

And in both my cancers I was clearly not a candidate for hitting the so called criteria for any testing. So I just ignore all the comments about too young or too old. Those really should be less likely or more likely instead of age related if you ask me. But they didn't ask me.

Anyway, so the USPTF (US Preventative Task Force) released a clarification on their breast cancer screenings earlier this week. They also claim they were misunderstood. And they want to clear up confusion. Well maybe the confusion was because what they said back in 2009 concerned everyone.

"The U.S. Preventive Services Task Force (USPSTF) released its final recommendations for breast cancer screening Monday in an attempt to clear up some of the confusion.

The group recommends that women at average risk for breast cancer should have a mammogram every other year beginning at age 50 up to the age of 74. Women in their 40s are advised to make an individual decision in partnership with their doctors, since the likelihood of benefiting from screening is lower for women in that age group.

Though this is an update from the group’s 2009 recommendations, the guidelines remain largely unchanged and a draft was released earlier this year.

The report, published in the Annals of Internal Medicine, also concluded that there’s not enough evidence to determine if newer 3D mammography is a good option for routine screening, or if women with dense breasts need extra testing.

The group’s 2009 report drew controversy for questioning the usefulness of mammograms for women in their 40s. But the task force says their words were widely misunderstood."

Blah, blah, blah. So in their clarification here they state that a mammogram every other year is all that is needed starting at age 50 if you have average risk. Let me ask all my friends in their 40's with breast cancer what they think if they had waited until 50 for a mammogram.

Okay, so medically maybe there is some logic in their plan. Or maybe not. If you look at breast cancer occurrence rates (from Cancer.gov):

Age 30 . . . . . . 0.44 percent (or 1 in 227)
Age 40 . . . . . . 1.47 percent (or 1 in 68)
Age 50 . . . . . . 2.38 percent (or 1 in 42)
Age 60 . . . . . . 3.56 percent (or 1 in 28)
Age 70 . . . . . . 3.82 percent (or 1 in 26)

It sees clear that most breast cancers occur after the age 40. So I don't understand this wait until 50 business at all. Now I am even more confused.

Early detection and saving lives

Laurie over at Not Just About Cancer blogged about the myth of early detection and linked to a very good article on the same subject in Psychology Today. Early detection is supposed to be a good thing meaning they caught your disease (whatever it maybe) before it got really nasty.

Amy Robach and others say 'my mammogram saved my life'. But is this really true? I am not saying that they are lying but the question is did their mammogram really save their life? I have friends who believe the same thing. They attribute their still being alive because of their 'life saving mammogram'.

Let's take a look at this. First of all, as the Psychology Today article points out, if we were detecting more cancers earlier wouldn't the numbers for late detection or deaths be decreasing? They aren't.

"But this dramatic increase in "early-stage" diagnoses has not been followed with a decline in advanced breast cancers, as would be expected if early detection was the key to stopping progression."

Next, breast cancer is not a linear disease. There are many types which are more or less treatable and some it doesn't matter when they are caught, they are still going to kill you. And others are never going to be fatal and will resolve themselves. We just aren't very good about telling them apart. 

"For all we do not know about breast cancer (i.e., what exactly causes it, how to prevent it, how to keep it from recurring, how to keep people from dying from it if it spreads), there are things we do know. Breast cancer is complex. It stems from multiple causes, some of which include radiation, carcinogenic chemicals, and cancer promoters such as endocrine disrupting compounds(link is external). There are at least ten subtypes of breast cancer that behave and respond to treatments differently. One-size-fits-all treatment does not work. Mammograms do not prevent breast cancer; nor do they guarantee that the cancer found on a mammogram (if it is found on a mammogram) is indolent, lethal, or somewhere in between. Acknowledging these complexities would not only help to shift the breast cancer paradigm, it would serve those who want to be well informed."

So if you feel your mammogram saved your life, you may or may not be right.

Annual state of denial

This week, I believe, I have my annual mammogram. I can't remember when it is and that is just fine with me. I just cannot afford to let my life be stressed out by a single annual appointment. I have too many annual/six month/three month and other appointments to get stressed by any of them.

In the meantime, I have other things going on. First of all the new kitties have settled in quite nicely. We have kept two of them. Layla was just too shy and intimidated by the other ones. That little saying that 'curiousity kills the cat' is very true with two less than a year old intrepid explorers.

I took my pills out of the closet to fill our weekly pill boxes. Immediately Boots (dark gray with white feet boots) climbed up on the closet shelf and tried to explore this newly accessible area. Operation fail. Peanut (the all black one), a/k/a Penguin, who will now be known as Zitipat is sporting a scrape from some effort to squeeze his tiny body into or out of an even tinier space.And they managed to rip a curtain rod out of the wall - pulling the bracket and nails right out of the wall.

But I woke up in the middle of the night with a purring cat sleeping on me.

So life moves along. I will survive handle my mammogram and any other medical adventures coming my way

$1500 for an MRI

This was in the Boston Globe on June 12, 2015.

I had to post it. Too funny.  But not funny 'ha ha'.

The imperfect mammogram

Sometimes I start to think, which can be a dangerous proposition and something that my husband believes I should not do too frequently. One thought that has wandered through my brain is that we make assumptions about mammograms and other medical tests and procedures. I also found an article that agrees with me.

To give a little history, I had a benign fibroadenoma at the age of 23, which was three years after my thyroid cancer, and have had mammograms since then. Fibroadenomas are benign and common in younger women but can put a woman at 1.5 or 2x the risk of breast cancer later on. (A little factoid I just learned and wish I had known decades ago.)

But after decades of mammograms, and breast cancer and a later fibroadenoma at the end of chemo, I can tell you I never felt they so wonderful or perfect. My first fibroadenoma was found by me and confirmed by a mammogram (my first). My breast cancer was found by a mammogram. My second fibroadenoma was found by an MRI and grew during chemo.

There has been a lot of disagreement, false information, arguments, stories about mammograms saving lives, and more in recent years. Komen says mammograms save lives (as her sister wanted - but that's another story). The AMA, ACS, and other groups have their own opinions.

But lets take a step back, as this writer describes, and think about the real mammogram numbers and results. Some cancers are missed on mammograms. Sometimes mammograms find benign conditions. These can lead to more testing or procedures or even over treatment.

First, no medical procedure, test, surgery or whatever is perfect. There is always a margin of error. Strep tests are good 99% of the time, flu shots don't prevent all cases of the flu, any surgery could have complications. Second, as patients we make assumptions that a medical whatever is going to save us. A doctor will come along and be able to save us from whatever. They do their best but research is always on going to learn more.

Screening for cancer can save lives but none of the tests I know of are perfect. A high number on a test can be a sign of cancer but it could be caused by something else. I am all for cancer screenings but we can't rely on them completely. We need to accept that medicine is not perfect but it is all we have.

Dense Breast Tissue and Laws

I feel conflicted about this one. There are new state laws enforcing that women with dense breast tissue must be notified by their medical providers. Okay, that's great but then what do they do?

Yes there have been women diagnosed with breast cancer which was not seen on mammograms but that is a small number. Advocates for this law want to help women be in more control of their healthcare. Advocates against it are concerned about overdiagnosis and additional costs - particularly in states where insurance companies are required to pay for ultrasounds after clean mammograms.

And doctors have said they don't have the tools to do much with the information.

"New ways of classifying dense breast tissue could put even more women in the category of receiving dense breast notifications, said Dr. Priscilla Slanetz, who recently wrote a New England Journal of Medicine article questioning the effectiveness of dense breast notification laws.

One reason she wrote the article, she said, was "in our state [Massachusetts] very few of our primary care providers have any knowledge about breast density and strengths and limitations of these different tests" for supplemental screening.

The same may hold true in California, where a small survey of primary care doctors found that only half of them had heard of the state's 2013 dense breast notification law and many felt they didn't have enough education to address what breast density meant for their patients.

On this point, both supporters and critics of the laws agree: doctors need better tools to help their patients identify their individual cancer risks."

Okay, so now we have people who want to have these laws but we do not have a way to deal with the information. How helpful.

The age range

There has been the on going controversy on when to start annual mammograms for all women - is it 40? Is it 50? Many go with age 40 but some don't. And its another debate.

But there is the other end of the scale - when to stop yearly mammograms. Breast cancer becomes more common in women as we age. The older you are the more likely you are to be diagnosed with breast cancer. Its a known fact. But when do we stop screening women for breast cancer? (There is the same conversation about colonoscopies on when is too old.) Currently the advice is stop at age 75.

Seriously. I had never really known this. As we age, we become less healthy and less able to tolerate cancer treatment. Its pretty nasty.

A friend's great aunt was diagnosed with colon cancer at age 98. She was too fragile to stand treatment. My aunt was diagnosed with early stage breast cancer at age 76. She had a lumpectomy, radiation and is on an aromatase inhibitor (I'm not sure which one). If she was younger, they might have recommended chemotherapy.

Another side of this issue is the increasing costs on medicare for continued mammograms for women over 75. Yale did a recent study on this. Part of the increase is due to the switch from the cheaper older film mammograms to the new digital ones (from $73 to $115). But also the continued mammograms after age 75.

One side says the stress and anxiety for older women along with the costs are reasons enough for stopping them.

""Clinicians and patients need to start thinking about the bang they are getting for their buck," said Dr. Anees Chagpar, director of the Breast Center – Smilow Cancer Hospital at Yale-New Haven, and a co-author of the study. "We must be cognizant of our use of technology and healthcare dollars."

"Our country and health system have finally recognized that this aggressive and dramatic rise in health care costs is not sustainable," said Dr. Cary Gross, director of the Cancer Outcomes, Public Policy, and Effectiveness Research Center at Yale Cancer Center and one of the study's lead authors. "We need to make choices about how to prioritize our healthcare spending.""


The other side says that as long as women are healthy, they should continue to have them.

""Women should get an annual mammogram as long as they are healthy, and age should not be the discriminator," said Gruen. "Breast cancer is the enemy. We should not politicize things (such as screening mammography) that have been shown to save lives.""

So the age range for mammograms is somewhere around 40-75. If you get breast cancer before age 40 and after age 75, you may be SOL. Let's take the politics out of this and stop 'prioritizing' crap and look at the health of women as the real concern.

Snake oil or good treatment?

Every so often I become a skeptic, well maybe a bit more frequently, but sometimes I am just not sure what I think of new treatment options. And here is an example.

Women with dense breasts run a higher risk of breast cancer being detected later as opposed to sooner as the density makes it more difficult to detect tumors by mammography. So in Australia, there is a new treatment for women with dense breasts. It is an implantable tablet that is placed under the skin and lasts for about four months before they need to go through it again. It has two benefits - reducing breast density and to reduce perimenopausal symptoms. You can see a video on it here and visit their website for more information here.

But its hormones - testosterone and others. Its called T+Ai.... Me I am not a big fan of hormone treatments after what happened to women who were treated with them in the 1980s and 1990s and then found it lead to higher rates of breast cancer. I know testosterone is not a breast cancer hormone per se but I feel it would be messing with my body's balance too much. And if it reduces breast density it is making a permanent change in your body which can't be undone.

It sounds good and could help women be able to detect breast cancer sooner. But is it fear mongering? OMG, you have dense breasts and that means you will get breast cancer and die because it won't be detected early no matter what you do?!!!! Maybe for high risk women with dense breasts but not for huge groups of women.

So my jury, of one, is still out on this one. I am a skeptic.

Putting emotion into our medical decisions

Have you ever gone to the doctor and insisted that you needed a specific test or treatment? You were so wrapped up in the emotions of moment and the ailment that you were not being rational.

You aren't alone. Emotion often leads us to choose unwisely. An example of this is the mammogram decision. Why have one? What if the result is bad? (This is the reason I will never go to a psychic.) Who wants to get bad news. And then the worst, what if the bad result is wrong and its actually nothing. That would be a false positive.

But apparently women do not think about the risk of false positive when they have mammograms.

"American women face conflicting advice about whether to be screened for breast cancer, at what age and how often. The decisions they make are often more strongly influenced by fear or a friend’s experience than by a thorough understanding of the benefits and risks of mammography."

But before we have any test or procedure, we need to be sure we educate ourselves on the possible outcomes and potential problems. In the case of breast cancer, it can be anything from a false positive to over treatment of a cancer. We just need to know first and make a smart decision.

The mammogram benefit discussion

There have been a few (thousand) discussions on the benefits of regular mammograms in the past few years. There are all sorts of claims on the problems of false positives, over diagnosis, false negatives, and all that.

So stop the presses and read the results of this latest survey. Its a bit of a statistics lesson so allow me to break it down with my stellar liberal arts education and marketing background

This survey looked at the incidence of breast cancer and the increased diagnosis trend from 1941 on. The first half of the time studied was from 1941 to the 1970s before mammograms - the base data.* Then it looked at the rates of diagnosis from the 1970s to the present.

What they could tell from the base data is the trend in increase in breast cancer from increased environmental or whatever factors and got their base rate of increase of 1.3% annually - or the expected rate of increase in breast cancer diagnosis. They also got their percentages of expected diagnoses of early and late stage diagnosis.

Then they looked at the date from the 1970s to present. What they then determined is that since the introduction of mammograms, the proportion of diagnoses of early stage cancer are up significantly and there is a 30% decrease in the expected rates of late stage diagnosis.

That is the benefit of mammography. The 30% decrease in late stage diagnosis. If you wish to debate the benefits or lack of benefits of mammography, please figure out a way to dispute that point.

*My 1981 cancer resource book from my first thyroid cancer diagnosis does talk about how mammography was being considered for annual screening for all women.

3D Mammography

3D Mammography, also known as digital breast tomosynthesis, has been around for the past few years. Originally I hadn't heard such great things about it but now I have heard more and find it an acceptable addition to cancer screening. Or at least in my opinion, which is what counts for me.

Basically in 3D mammography they take lots of pictures of slices of your breast as opposed to the single image from regular mammography. (Think CT vs x-ray) It takes a little longer for the radiologist to read all the pictures because there are so many of them, but they do  provide much clearer images, better detection, and fewer false positives.

When I went for my annual mammogram a few weeks ago, something I chose not to discuss until I got the results, I had a 3D mammogram. The hospital has added the newer machines in the past year. Their current arrangement is that if you have a doctor appointment the same day, you get a regular digital or screening mammogram. But if you do not have a doctor appointment the same day, meaning the radiologist has lots of time to read all the pictures from a 3D mammogram, that is what you get.

I had decided I see too many doctors and cut back on my radiation oncologist - I don't know why I was still seeing her anyway - and canceled that appointment this year. Some how my surgeons office never scheduled my annual appointment with them, even though I thought I was supposed to be followed by them for life, so I am down two appointments for the year. I will talk to my medical oncologist and my primary care when I see them to make sure I am getting the follow ups I should.

And I learned something, I will have my annual mammogram without a doctor appointment the same day so that I get the 3D mammogram. And my results this year were clean.

A Way to End the What Age for Mammograms Controversy?

Work with me here, what if everyone could agree on one option for the mammogram controversy? Wouldn't it make a lot more sense? I mean there has been so much ink about this single issue. On one hand is prevention and on the other is over diagnosis and false positives, with a lot of other data, crap, history, and arguments added on to each. So what is the real answer?

I believe JAMA has the right idea here. In the age of personalized medicine, why are we hung up on cross the board requirements? JAMA suggests that we "Stop One Size Fits All Mammography".

"A woman's decision to undergo mammography "should be individualized based on patients' risk profiles and preferences," concludes a systematic review of 50 years of breast cancer screening data, published in the April issue of JAMA.

How to best go about achieving that individualization is not entirely clear, but clinicians need to make an effort with the tools that are currently available, such as decision aids and risk models, 
suggest Lydia Pace, MD, MPH, and Nancy Keating, MD, MPH, both from Brigham and Women's Hospital in Boston, in their review."

Their argument is that a woman should be able to make a decision on mammography with their doctor based on their risk. The problem is that current science does not allow us to accurately estimate all women's risk of breast cancer. So the problem isn't with mammography but with the ability to predict breast cancer.

Before we jump ahead to that issue, let's stick with making mammography a personalized decision. I think this is a great idea. If someone has a high risk background, they should start mammograms earlier. If they do not have one, they should decide with their doctor when they should start them. Insurance companies should cover them regardless. There doesn't have to be a national rule on when they should be started.

Now switching to being able to predict breast cancer. We can't really. The BRCA genes allow us to predict women who are high risk but that does not cover all women who will get breast cancer, really less than 10% I believe. There can be other risk factors, family history, genetic background, and more.

Since we can't really tell who will or will not get breast cancer and may never be able to, we do need to use whatever screening methods we have. Until we have something better than mammography, it is our tool to use as best we can. But it should be the patient's choice and not the insurance company's.

Thoughts on mammograms and false positives

There has been a lot of controversy in recent years about the benefits of mammography and false positives. I read Dr Susan Love's take on how "Mammography is like the TSA" and the comments left by women. It made me think.

I started having annual mammograms at age 22 because of a benign fibroadenoma so I am sort of out of the discussion. My breast cancer was discovered 23 annual mammograms later at age 45. I went to all those mammograms without any concern until the one in 2007 (and if you are trying to figure out how old I am, currently I am 37) which turned into an ultrasound, a lot of denial on my part, followed by two surgeries, chemo, radiation, and hormone therapy to where I am now.

But if it was me to do it all over again, at this point I would rather be over treated and have a few false positives along the way than to have a cancer missed. My cancer could not be felt in a manual exam. My benign one way back when could be felt. My subsequent benign fibroademona, six months after my diagnosis, could not be felt either due to scar tissue. But it was visible in an MRI and ultrasound.

If you think about it, we have a tool available to us that helps with early detection and that alone does equate to saving lives. Its like wearing your seat belt. If you wear it every day, you are making your best effort. But on the one day you need it when that car pulls out of a side road in front of you, you are saved.

Dr Love makes an analogy of a mammogram like TSA screening which I can understand as well. Any effort we can make to help us live more safely makes sense. You can opt out of wearing your seat belt at your own risk. You can opt out of your annual mammogram at your own risk. But there shouldn't be someone blocking you from access.

The risk for breast cancer starts to increase for women at age 40 so there is no reason to delay mammograms until age 50 - just because the risk is significantly greater. As Dr Love points out there are many types of cancers and each are different. She raises the question that we may need to reevaluate the goal for early detection . But until it is changed, I am sticking with my annual mammogram.

Blood tests for breast cancer?

You mean maybe we could skip the annual mammogram and just have another blood test? That would be too cool. Now I couldn't read the article without subscribing to another magazine but suffice to say the abstract is promising enough:

"A new blood test may be able to detect the early stages of breast cancer, researchers say. Scheduled to begin vigorous clinical testing in early 2014, the test successfully identified the presence of breast cancer cells from serum biomarkers in preliminary testing, a huge step forward that could make breast cancer testing more widespread and more regularly detected early..."

Wouldn't it be nice if a test could be replaced by a blood test? How much money would be saved? How much time could be saved? Mammograms and MRIs only after an older age - 55? - or for high risk groups? This is something I would call progress - of the good kind.