Mixed Messages About Breast Cancer Screening

Almost 2 weeks ago, the U.S. Preventive Services Task Force (USPSTF) announced a change in their recommended routine breast cancer screening guidelines: "The USPSTF recommends against routine screening mammography in women aged 40 to 49 years." This set off a swarm of controversy and confusion.

The USPSTF's reasoning behind having women delay mammographic screening for an entire decade (!) cited that mammography has the most benefit for women aged 50 to 74, meaning that it is more effective in finding actual breast cancers among women in this age group. Mammography was cited as having "maximum effectiveness" for women aged 60 - 69 years.

For women aged 40 - 49, the recommendation mentions specifically that false-positive results occur more often within this age group. This might well be true, but as roughly 25% of breast cancers are found when women are in their 40s, I cannot begin to understand how delaying screening for 10 years could ever be advised. Also, many of the most aggressive cancers occur when women are in their 40s.

According to the American Cancer Society, for the year 2006, women in their 40s accounted for 17% of the deaths from breast cancer. This is not an insignificant number. If the USPSTF thinks that the ratio of 1900 women screened to 1 life saved is not enough to justify recommending screening for women in their 40s, they are overlooking the fact that most of the patients surveyed for any disease will not have it; that's why they call it "screening". If 17% of breast cancer deaths, and over 25% of breast cancer cases occur in women 40 - 49, their recommendation to do nothing until age 50 is completely outrageous.

And, if you're a gal who is 75 or older, you have apparently lived long enough, according to the USPSTF. There is "insufficient evidence" to recommend mammography screening for this age group. I have read some very heated comments on the web from women in this category: they are planning to live a very long time, and who is to decide that their lives are not worth as much as women in their 60s and 50s...? The answer is, "no one".

The USPSTF also mentions the "psychological harms" of undergoing screening and biopsies; I can tell you from personal experience that the anxiety which you feel while waiting for your biopsy results is nothing, compared to hearing those utterly devastating words, "We found cancer". Most women would rather undergo a temporary period of anxiety about their mammogram or biopsy results, because for most of them, it is followed by the relief that they feel when they find out they are cancer-free.

The entire biopsy process is much easier now than it was when I had my first cancer scare 16 years ago: I had to undergo general anesthesia, have an excisional biopsy/tumor removal in an operating room, then awake from the anesthesia to find out whether or not I had cancer. When my cancer was found in 2007, I underwent a stereotactic biopsy in a surgical suite, where I was awake the entire time, and only needed a tiny incision. A month later, post-MRI, I had to have another stereotactic biopsy of a suspicious growth in my other breast; thankfully, this turned out to be benign, although I had mentally prepared myself for the possibility of having cancer in both breasts.

I am very concerned that women who don't routinely get mammograms will use this as an excuse to delay or forego being screened. We all know friends or co-workers who put off getting their mammograms for one reason or another, and they will use the USPSTF's recommendation to justify their decision. This will ultimately cause more harm, and have women presenting with more advanced cancers, diminishing their chances of survival. This is costly to the patient's quality of life, and to the entire healthcare system, as these cases are more difficult and expensive to treat.

Many medical professionals are now angered by the climate of confusion and conflicting messages which the USPSTF has created: for decades, women have been encouraged to have regular mammograms, which do save lives. My cancer was found by my yearly, non-digital mammogram, and I remain extremely grateful for this. I am convinced that my mammogram saved my life.

The American Cancer Society and the National Cancer Institute still recommend yearly mammograms for women aged 40 to 49. This is the important thing to remember, and please, get screened. Life is precious.

My Biggest Health Challenge

My biggest health challenge right now is losing the extra pounds I gained during and in the months following my radiation treatments. As I have written here, I have never weighed as much as I do now; besides the aesthetic and wardrobe limitation issues this brings with it, I need to lose weight for my continued health. I was always a tiny little person; now, I'm still tiny vertically... To minimize the risk of my cancer returning, and to prevent heart disease and diabetes, I have to lose weight.

I literally wanted to sleep all of the time during radiation; I even started drinking coffee at work (something I had never done before) just to stay awake. For someone who was always described as "perky" and "bubbly", I barely managed to drag myself through the day, by sheer force of will. The fatigue that I experienced was profound, and it made the slightest effort seem truly overwhelming. Exercising was impossible; everything seemed like exercise!

Sometimes, I would find myself eating just to keep awake, and I could no longer eat the same foods that I formerly enjoyed. At the end of the day, there was no "second wind" to draw upon for my usual working out with weights, or walking on the treadmill. Napping became a major activity; when I finally managed to go out on the weekends for a 4-mile walk, I would have to take a 2-hour nap afterwards just to be able to stay up until my usual bedtime.

Now, I find that I'm running around at work or at home, and I consciously realize that I'm getting my energy back. Last weekend, I walked 4 miles both days, and I'd like to keep it that way! I'm working out with weights regularly, although at times I feel like the photo above; I'm walking on the nature trail near my home, and on the treadmill. It's much easier walking outside than on the treadmill, though, because I feel like I'm enjoying nature, and not "exercising".

My eating habits are better now: whole grains, fruits and vegetables, lots of water, small meals. I try to maintain some of my "old" rules, such as not eating anything after a certain time of day (usually 8PM or so). I don't believe that some foods should be "forbidden"; you will just crave them even more. That's why snack-size candy bars and ice cream cones were invented! My daily medications present challenges to some patients in their efforts to lose weight; I managed not to gain any weight when I fractured my ankle and couldn't even walk for 2 weeks. That, to me, was an achievement! Right now, I'm losing 1 pound a week, and I'm happy with that.

I saw my oncologist Thursday, and said that by the next time I see her, I hope that there's less of me to see. That would be another "milestone" to reach on my way back from July 2007. Wish me luck!

Over-Screening for Breast Cancer?

Earlier this month, both the American Cancer Society (ACS) and the Journal of the American Medical Association (JAMA) published communications alerting the medical community about over-screening for breast cancer. The estimate now is that 30% of the breast cancers which are found are so slow-growing that they are not life-threatening; and, some of these will disappear completely without any medical intervention at all.

Breast cancer screening has greatly improved the ability to find very small tumors; mine was only 2mm in size, and showed up on my yearly screening mammogram as a concentration of white dots, called microcalcifications, indicating an area of rapid cell turnover. The tumor wasn't found at my OBGYN exam a few weeks before; it would have taken months before it had grown large enough to be felt.

My tumor had already reached the invasive stage; it had broken through the breast duct, and was invading the surrounding tissue. At this point, the cancer cells have had a chance to reach other areas of the body, possibly creating secondary tumors. If the patient is fortunate, there has been no metastases, or tumor formation at other sites, and the cancer cells which did migrate elsewhere have been killed by the patient's immune system.

People have asked me how I feel about undergoing biopsies, 2 lumpectomies, 6 weeks of radiation, several screening scans and MRIs, and taking anti-cancer meds for a 5-year course when there is a 30% chance that my cancer wasn't deadly to begin with.

My response is that there is a 70% chance that my invasive cancer would have killed me, so I am very happy that it was found so early. If I had not gotten my yearly mammograms as recommended, my cancer might have spread to my lymph nodes, greatly decreasing the odds of my survival. Another advantage is that my node-negative status meant that I avoided needing chemotherapy, and I am very grateful for that.

I don't feel that I should have delayed treatment, hoping that my cancer would resolve itself. Once you find out that you have cancer, you just want it out of your body. It would be difficult, if not impossible, to just "do nothing" when you're diagnosed, unless there is an additional means of confirming that the cancer you have is indeed the non-fatal type.

My cancer was Stage 1, but even cancers this small, and some at Stage 0 (non-invasive) have proven deadly. There is so much that we still don't know about what causes some cancers to grow, and others to become dormant, or even totally disappear.

So, until researchers can determine which breast cancers are non-fatal, women shouldn't forego being screened. The ACS is standing by its recommendation of yearly mammograms for women over 40. That is vital for us to remember amid all of the current controversy.

Your "new normal"

As a cancer patient, your goal is to reach the end of your active course of treatment, and to get your life back to where it was before you were diagnosed. But, like so many other things, this is not as easy as it sounds, physically, mentally, or emotionally. And, the truth is: your life will never be the same. You have gone through a life-altering experience. There's a term for what you're attempting to establish: your "new normal"; meaning living as normally as possible, knowing that you cannot restore your pre-cancer life.

Your transition from a "cancer patient" to a "person with cancer" isn't easy. You eagerly hoped for the end of your active treatment period, when it seems as if all of your waking moments are spent going to medical appointments, imaging studies, chemo and/or radiation, lab testing, etc. You know that it's necessary, but you can't wait for it to be over, and you feel more like a patient than a person.

When you're placed on "follow-up", you're going to really miss the personal contact with, and support from, the majority of the wonderful people who got you through a hellish period of your life. You will feel very alone as you face the future. You need to prepare for how you will handle this transition, and what resources you'll need to establish your "new normal".

You may find that emotions which you suppressed during treatment are now coming to the surface, such as anger and sadness. This is similar to post-traumatic stress, or delayed grief. It's vital that you face your feelings and work through them; otherwise, they will prevent you from moving on with your life. Talking to family, close friends, or even joining a support group will help you realize that you are not as alone as you might feel at this time.

Chances are, you'll deal each day with physical reminders of what you've been through as well: I see my scars, and as they are healing, I'm also healing inside. I don't think about my cancer returning, but if it does, I know that I'm strong enough to face it. I won't allow cancer to "co-opt" my present, or my future. I wake up each day seeing the person in the mirror as someone who has "had" cancer, even though I still visit my doctors, take daily meds, and will be doing so for a few more years.

Many people, as part of their "new normal", choose to do something which gives meaning and purpose to their cancer experience. For me, it was deciding to begin this website, writing about my journey. Previously, I wouldn't have had the courage to do something like this, but this is one of the "gifts" of my cancer. I wanted to take something negative and turn it into a positive; I also hoped that sharing my feelings might be of some help to other cancer patients.

People also decide at this time to follow their dreams, do things they never had the chance to do before, or take their future life in an entirely different direction, such as: going on that trip they've only imagined, climbing a mountain, or starting their own business. The rest of your life from this point forward should be defined by you, not by your disease.

For me, the dream is to retire and to move to Maui. After all that I've been through, I'm even more determined to make this my reality. I want to die there, and have my ashes scattered at Keawakapu. When Lindbergh was receiving medical treatment in New York, and it was confirmed that he only had a few days to live, he asked to be flown back to Maui so that he could die at his beloved Kipahulu. I feel the same way.

Focus on your future, and do something meaningful with the life which has been "given back" to you.

Life is precious. Don't waste it!

Do You See Miracles?

"There are two ways to live: you can live as if nothing is a miracle; you can live as if everything is a miracle." Albert Einstein

I read this quote on another website about a cancer patient, and it really hit home. I have always been someone who lives as if everything is miraculous, and this has been greatly magnified by having cancer.

Is life really worth living if you never take delight in what you see around you, who you have around you, and what gifts you have been given? To me, that's not living; it's just existing, and there is a huge difference.

I know that the fact that I'm alive is a miracle: when I was born 2 1/2 months premature, weighing 2 lbs. 7 oz., all that could be done was to baptize me and put me in an incubator. The amazing technology we now have to assist very tiny babies didn't even exist.

For a while, the doctors thought that I was born blind, that I would probably have severe problems ever walking or moving normally, and there was a good chance that my brain would be damaged by the inexact oxygen levels of my contained environment. My chance of survival was slim. All that I had going for me was my will to live, and the tender care of the nursing Sisters of Providence, who were completely devoted to me. I was released from the hospital 3 months later, weighing a whopping 5 pounds, still resembling a doll more than an actual baby. The doctor who delivered me used to call me "the little atom", because I was so small at birth.

I beat the odds, and survived, with no adverse affects. So, perhaps why someone like me sees life as miraculous - for me, it really is.

It's easy to get jaded and cynical about life, but it doesn't have to be that way; and, you don't have to experience life-threatening illness to make you appreciate being alive. There are miracles for you to find each and every day. It all depends on your outlook, as Einstein wisely observed.

So, I ask, "Do You See Miracles?" I hope so...

Back on my feet again - with caution!

I went to the orthopedist today, and I have been medically cleared to put weight on my foot and walk around again. I have to wear the Aircast brace for a couple of weeks or so, but this means that I can now leave the house, drive my car, and...go back to work!

My ankle is healing exceptionally well, even though my ankle and foot still look disgusting; an overall yellow, with a purple undertone, and bruises which will take some time to go away, I'm sure. I will be doing exercises at home to increase the mobility and strength of my ankle, and I'm getting used to walking around with the Aircast.

I'm sure that a lot of my progress is directly due to the terrific care and advice I received from my husband while I was unable to walk. As a former runner who has even done a marathon, he is a veteran of many ankle injuries, and his experience was invaluable to me during this time. We're planning to go out walking again this coming weekend; this is permitted, as long as I'm wearing the Aircast brace. It might not be a 4-mile walk, but I will be out there on the trail again! (Watching out for lurking holes in the grass...)

Just being out of commission for a couple of weeks made me feel truly sorry for anyone who is permanently confined to bed, or housebound. My Irish Nana who raised me used to say, "Every day that you wake up and you put two feet on the floor is a good day", so now I have a greater realization of just what she meant by that.

So, even though I didn't break anything in 1995 when I was run over by a van in Manhattan, but managed to break something just walking near my home, I feel very happy about the way this entire experience worked out. I will be wearing my Aircast, working out with weights soon, and getting back to my usual activities.

I would have been totally lost without my iPod Touch, its fantastic apps, and its wireless Internet, as I couldn't get to the Mac during my non-weightbearing stint. It was a lifesaver!

A Minor Setback

One week ago, I was out for my usual 4-mile walk with my husband, on the nature trail near my home. We were only a few blocks from home, and had just exited the trail, walking at the side of the road on some grass, when I suddenly stepped into a hole several inches deep, slammed into the ground on my forearms and hands, and injured my ankle. The hole was completely covered over by the grass surrounding it, so I didn't see it as I looked ahead.

As I struggled to stand up, I was acutely aware that I had done something terrible to my right ankle. Placing weight on my foot was difficult, coupled with a sharp, scream-inducing pain, which traveled up the outside of my ankle and calf if I moved my leg in the wrong direction. I insisted on "toughing it out" and carefully walking home, with my husband helping me. It was obvious that I needed to be taken to the hospital, as my ankle was swelling up considerably.

At the ER, I was placed in a wheelchair, and wheeled in to be evaluated. I noticed that the NP was wearing a breast cancer pink ribbon pin. When I commented on this, she said that she had been diagnosed with breast cancer at age 36, and had undergone a double mastectomy, and chemo, which "kicked her ass". I told her that I was also a breast cancer patient, and that I was glad that her ass had been kicked, because that meant that she was still here! As I have written before, you really do bond with other cancer patients, which is one "gift" of having had this experience.

I was placed on a gurney, and after a while, was wheeled into the radiology area for several foot/ankle x-rays. At this moment, it occurred to me that this was the first time since being diagnosed that I was NOT here at my "usual" hospital for anything related to my cancer treatment; and it was a positive realization. Today, I was just "the woman with an ankle injury"; how different for someone who had spent many days there seeing doctors, undergoing surgeries, scans and tests, having my radiation treatments, etc.

I was sent home wearing an Aircast, but told to see an orthopedist ASAP, preferably the following day. I managed to get an appointment with a MD at my husband's ortho MD group, and they confirmed that I had a hairline fracture (described as a "good" fracture) where the sprained ligament attaches to the ankle bone. I left the orthopedist's office wearing a knee-length, black "boot" that looks as if it was designed for Darth Vader.

Mine is black, not navy blue (the above photo was the best one I could find on the web), and the ortho nurse told me "Black goes with everything" - hmmm - what would anyone wear with the likes of this futuristic, velcro-laden footwear? The boot makes the ankle feel a lot more protected and better isolates the joint; although, it also evokes images of Frankenstein lumbering around as well...!

I have been home now for a week (one more week to go!), forbidden to walk anywhere except for short trips to the bathroom or other areas on the same level. The pain has gone from a "9" to about a "2", but if I move in the "wrong" direction, or something presses on the outside of my ankle - yeoucchh! My foot is bruised on both sides of my ankle; I have purple bruises at the bottom of my toes (!), and the top surface of my foot is now turning a lovely yellow color, which complements the purple.

I'm seeing the orthopedist one week from today, and hopefully, then I can go back to the Aircast, which means that I can drive a car, and thus, return to work.

My wonderful husband has been taking very good care of me: driving me to the ER and to the orthopedist, preparing and bringing me my meals, getting my pillows, refilling my drinking bottle, helping me get around, and making me laugh, which really is very good medicine. He has been amazing, just as he was when I was recovering from my surgeries.

I'm determined not to gain more weight just because I can't exercise right now, and, as soon as it's medically possible, I'll be back "out there" on the trail, walking my post-cancer pounds away. This is just a setback, and I have already laughed about it! Why, it's as easy as "stepping in a hole"! So now, I know exactly how that expression came to be.