Screening Options For Breast Cancer - My 2 Cents

There's been a lot of attention on mammograms for women as an early detection tool for breast cancer - early detection saves lives! - and yet, the American Cancer Society recommends against women under 40 getting them. With such an effective tool out there, many women are demanding to know why.

I just added an amazing physician as part of my "Cancer Team," Dr. Jon Greif, who actually wrote a journal article on the subject (http://newsfromthebreast.blogspot.com/), and explained to me how and why breast cancer develops and spreads, and how mammographies and MRIs are used as screening tools. I also had a thermogram with Dr. William Amalu, who started his practice after his sister died young from breast cancer that was missed by mammography.

As it turns out, yearly mammograms are actually NOT effective screening tools for women under 40 who are not at risk for breast cancer. They're not only expensive; they also expose you to radiation that is unnecessary if you're not at risk for developing cancer (i.e., you are under 40 and have no family history, no genetic predisposition, or no environmental factors that put you at risk). Another factor is, mammograms are not perfect screening tools. I had two "clear" mammograms in the 4 years prior to being diagnosed with Stage IIIA Invasive Ductal Carcinoma, most likely because they were film mammograms, not digital. Film mammograms are apparently notorious for "missing" cancer in some women (after hearing Dr. Amalu's sister's story, I wonder if she too was a victim of film mammography).

In addition to mammograms, there are two other procedures that image the breast. Thermograms are "heat pictures" that detect blood vessel development in the breast - and MRIs - Magnetic Resonance Imaging scans - which can detect cellular changes in the breast. Even these two screening options have their limitations, though.

So, what's a girl to do, when being surrounded by pink ribbons inspires anxiety about the Big C? There are a few things, with various costs and benefits, that you can do to improve your chances of detecting breast cancer, whether you are "at-risk" for it or not. Here they are:

1. Self-Exams. First, you should know your breasts. Every dimple, every lump, every little twinge-y area and how they all change during your menstrual cycle. I check my boobs in the shower every month, and it was during one of these self-checks that I noticed a little lump on my right breast. The size of a red seedless grape, it felt kind of firm and different from the rest of the tissue around it. I waited a month, and when it was still there, went to my OB/GYN, who recommended a mammogram and sonogram. At the end of the sonogram, the technician told me, "Well, we have a two out of three - there's something there, it's not cancer, but we don't know what it is." They recommended I keep an eye on it and come back if it changed. Two years later, I was getting a breast reduction and I mentioned the lump to my plastic surgeon, who recommended another mammogram, just to be sure. Back I went to the screening facility, and again, they told me, "No cancer, keep an eye on it." No biopsy, no MRI. All this time, I was still giving myself exams, still monitoring the lump, and it was still there, but it never occurred to me to demand it be removed - it couldn't possibly be cancer, I told myself - I was too young, right? When I developed a second lump in my armpit, and the lump in my breast started to feel like a wad of chewing gun instead of a grape, I went to another doctor, and because I had been monitoring it for four years, I knew with absolute certainty that it had been there, and that it had changed shape. My new doc recommended an immediate lumpectomy, and I was diagnosed with Stage 3A breast cancer. The diagnostic tools at my disposal failed me, but my own knowledge of my body saved my life.

2. Thermograms. Less expensive than a mammogram or an MRI, Thermograms are non-radiation based, non-invasive, and low-cost (http://www.breastthermography.com/breast_thermography_mf.htm). So, why don't we use them instead of mammograms or MRIs? Because there are things a mammogram and an MRI can detect that a thermogram can't. Thermograms are "heat pictures" of the breasts, based on the idea that tumors require a network of blood vessels to feed them, and that those networks have a different heat signature than the surrounding tissue. A tumor with a blood supply shows up on a thermogram like a starburst. I had a thermogram about a year after my first mammogram and sonogram, when the lump persisted, and it showed, clear as day, a small mass with a blood supply. Sadly, I doubted the validity of the report because someone told me doctors consider thermograms "fuzzy science." Had I ignored them and demanded a lumpectomy, I might have been able to catch my tumor early enough to avoid chemo!

In my opinion, thermograms can be extremely helpful in providing an additional level of surveillance, even for women who are not at risk for breast cancer. The fact is, it saw my lump when a mammogram didn't, and had I taken the thermography report to an open-minded physician, she might have recommended a biopsy of the mass, despite my "all clear." That biopsy might have detected my cancer before it spread. When you are under 40, with no history of cancer, a mammogram is unlikely to be covered by your insurance and can expose your to unnecessary radiation. If you can get information about anything that might be going on in your breasts (granted, not the same information, but still relevant information), with no risk to your health, for a low cost, that might be able to save your life, why wouldn't you?

I've chosen to get a thermogram every year, as an adjuvant screening tool that helps me document the changes in my breasts consistently. It's an affordable, non-invasive procedure that doesn't expose me to additional radiation AND gives me an another level of surveillance on top of my doctor-prescribed screenings.

3. Mammograms and Sonograms. When you have an identifiable lump, that you have been feeling for at least a two months, whether it is fixed, moving, painful, not painful, whether you have a history of cancer or not, you should have it examined by a doctor - at least your OB/GYN, or a breast surgeon if you can get an appointment with one. Usually, they will recommend a mammogram, or at least a sonogram. Keep in mind that while mammograms don't expose you to a dangerous level of radiation, it's enough radiation so that you don't want to get one unless you need it. And don't worry about the pain or discomfort you might have to go through during one - seriously! If you have a persistent lump, a mammogram can save your life, so you don't want to be scared of it or avoid it. Trust me - a few minutes of pain or discomfort getting a mammogram are NOTHING compared to getting a chemo port or Neupogen injections weekly for three months. That being said, ALWAYS request a DIGITAL mammogram. There was a Wall Street Journal article (http://online.wsj.com/article/SB114894538244165778.html) back in 2006 that said the benefits of digital vs. film mammograms are negligible unless you're over 50, which, in my opinion (and, I think, my breast surgeon's) is complete crap. I got two film-based mammograms and neither one detected my cancer. When I compared the film images to the digital ones years later, it seemed ridiculous that they would even be considered a screening tool - the film images were slightly blurry, and my boob looked like a globby gray mess. By contrast, the digital images were sharp, distinct, and my doctor could literally zoom in and out and enhance areas of the image with a mouse click! Request a digital mammogram - fight for it if you have to - no matter how small your lump is, no matter how old you are, no matter what your family history is. It can save your life.

4. The BRCA Test. This is a genetic test you can have done - very easy (a cheek swab), but very expensive (about $2500-$5000) - to test for the presence of two genes which have been shown to pre-dispose women to breast cancer. If you have a family history of breast or ovarian cancer, you may or may not have the gene, but this test can give you a definitive answer, and some insurance companies even cover it. If you test positive for the gene, you also have a higher risk of developing ovarian cancer, which is even harder to detect than breast cancer.

A few months into remission for breast cancer, I developed lower back pain, irregular periods, and constipation for about two months. Coupled with my BC diagnosis, it made me a high risk for ovarian cancer, so my doctor ordered the BRCA test and a pelvic ultrasound. Luckily, my ultrasound was clear, and I tested negative for the gene, but without that information, she would not have been able to recommend an appropriate course of treatment.

5. MRI. MRI, or Magnetic Resonance Imaging, is a highly effective tool for detecting cellular changes in the breast.... but it's also highly expensive, slightly uncomfortable, and not really necessary unless you have a history of cancer (either personally or within your family) or symptoms that require further evaluation. Although MRI can detect things that mammograms can't (like tumor cell activity), mammograms can detect things MRIs can't (like calcifications, which are precursors to cancer). This is why doctors don't just order MRIs for every person who has lumpy breasts. It's not a money or reimbursement issue; it has to do with a doctor's review of his or her patient's history, symptoms, and the diagnostic tools at everyone's disposal. Usually a doctor orders an MRI for a specific reason, and it's important you communicate with each other to understand not only what you'll be looking for, but the ramifications of what will or won't be discovered. Which brings me to my last (and, sometimes, most important) tool....

6. Advocating For Yourself. Participating in your own care, by listening to your doctor and advocating for yourself, is SOOOO important. It is the one thing that, given everything else, can truly save your life. Nancy Brinker tells the story of her sister, Susan G. Komen, who did everything her doctor told her... and died. Nancy, by contrast, was a strong advocate for her own care, and survived. The fact is, all doctors go to medical school, but not all of them give every patient the same attention. Some doctors will see a lump in a 27 year old woman and tell her "You're too young to have breast cancer." Another doctor will immediately order a mammogram, sonogram, and schedule a biopsy. I am very lucky to have a Dream Team when it comes to my current health care, but I wasn't so lucky when I first found my lump six years ago. Back then, I had doctors who barely knew me, didn't take my symptoms as seriously as they should have, and dismissed my concerns.

Medicine is a two way street - listen to your doctor, but participate in your own care. Understand your diagnosis and your doctor's justifications for treatment recommendations. If you don't like what your doctor is saying, or he or she won't listen to you, won't support you, or recommends a course of care you don't agree with, get a second (and even a third) opinion. Now, if you talk to three people, they all say the same thing, your doctor might be worth listening to, but, if you still harbor concerns, do some research in the Internet. Reach out to other people who might be facing what you're facing. Get a nurse navigator to help advocate for you. Do your best to make an informed decision (which means, of course, doing your homework).

I learned the importance of advocating for yourself the hard way. When I first found my lump, I suspected something was wrong, but when one doctor told me not to worry, I stopped worrying. I didn't get a second opinion, I ignored the naggning voice in my head. I wanted to believe it was just my imagination! I didn't want to believe I had a tumor growing in my breast (who does?!). But if I knew then what I know now, I would have pushed for a biopsy, and if it was inconclusive, a lumpectomy, and then stopped worrying about chemo or cancer. My mistake wasn't relying on the opinion of someone who delivers babies all day (instead of an oncology surgeon) - it was being passive about my own health care.

If you have a lump, and people are telling you not to worry about it, but no one is telling you what it is, participate in your own care. Seek out a doctor who will listen to you, familiarize himself with your case, and give you an informed diagnosis. My breast surgeon thoroughly evaluated my case, and recommended a monitoring schedule that takes into account, my history, my cancer's pathology, and the current protocols in the medical community. I may not be able to predict the future, but I feel I am (finally!) safely in the hands of someone who wants me to have the most information I can have going forward, and is prepared for whatever course of action that information may dictate. That, to me, is as good as it gets.