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Friday, February 17, 2012

Sharing Our Stories, and Our Data, May Save Lives

By Heather Millar

clinical trial

When it comes to cancer research, you might say that I’m an outlier. Since I was diagnosed with breast cancer 18 months ago, I think I’ve participated in at least four clinical trials: one surgical trial that took a little extra tissue when I had my lumpectomy, a trial about “chemo brain,” a trial tracking the medical and emotional side effects of chemo, and a trial that seeks to help patients save their hair during chemo.

I’m not at all the norm. Estimates vary, but only 4 to 7 percent of adults with cancer participate in cancer research. In contrast, nearly 60 percent of children with cancer do. Experts have lamented this forever. Ten years ago, the National Cancer Institute was trying to identify the barriers to patient participation in research trials.

They listed the working theories:

• Many patients don’t have access to cancer research centers, or they may not know about current research.

• Some patients may be afraid to deviate from “standard care.” They’re afraid of becoming research guinea pigs.

• Others may be concerned that sharing their medical histories and data might result in a loss of insurance coverage.

• Both physicians and patients fear the “loss of control” that participating in a trial may bring. Are you getting the real drug or the placebo? That question may just create too much anxiety for some of us.

Yet, here’s the thing: We’re coming up against the limits of what cancer screening can do to prevent deaths. Sure, improved screening saves lives. In fact, I’m pretty sure it saved my life. But when you go beyond the personal to the broad scale, improved screening also results in over-treatment, treating early stage cancers that may never have grown bigger. This may result in needless expense. Concerns about these issues have led to the recent controversial changes recommending less aggressive screening for both breast and prostate cancer.

Cancer, as we all know, is not one disease, it’s hundreds of diseases. My breast cancer will not be like your breast cancer. Your Dad’s lung cancer will not be the same as his work colleague’s melanoma. Put another way, you may not need to treat a small cancer with a sledgehammer. Or, then again, you might. The big question is: How do doctors know which is which?

As a recent overview from the National Cancer Institute, puts it, the “cellular characteristics” of your cancer will be “an important predictor of cancer behavior.” In human speak, this means: How disordered your cancer cells are, what genes they switch on, what hormones they react to—all this will determine if your cancer spreads like wildfire and resists all attempts to control it, or, if it grows slowly, responds to treatment and goes into remission.

In many ways, your cancer is as personal as your fingerprint.

Last week, I attended the first public forum of the Athena Breast Health Network. There, I listened to about a dozen experts talk about how personalized treatment—analyzing the particular genetics and biological markers of each cancer—will be the future of cancer care.

And how do these doctors propose to get there? With data, data, data. And who needs to give them that data? We, the patients, do. Or, at least, some of us do.

The Athena project brings together the five University of California campuses with medical centers: UC-San Francisco, UC-Davis, UC-Los Angeles, UC-Irvine and UC-San Diego. They will pool their resources to track 150,000 women, both those who are healthy and those affected by cancer. Then, they will organize the data in a consistent way so that many researchers can try to determine what makes one cancer deadly and another one treatable.

Athena hopes to do for breast cancer what the famous Framingham Heart Study—which tracked 5,000 people and two subsequent generations over decades—did for cardiac care: Come up with things that tag cancers as high-risk. For instance, Framingham taught us that high cholesterol is bad for your heart. Might there be another simple marker for cancers?

Athena also hopes to develop a structure and a model that can be used to combat other cancers and other diseases. Already, UC faculty members are discussing the possibility of a similar network for prostate cancer. A Swedish project, called KARMA and directed by Stockholm’s Karolinska Institute, is now recruiting 100,000 women to be tracked for breast health.

Obviously, most people do not live in California or Sweden, but there are other ways those who want to do so can pitch in:

An Oakland, California website matches breast cancer patients nationwide with clinical trials that might be appropriate for them.

The Love/Avon Army of Women plays a similar matchmaker role between women and breast cancer researchers.

The National Cancer Institute features a search page that lists more than 10,000 clinical trials currently accepting participants. You can search by condition, stage, zip code, hospital, or institution.

Cancer is complicated. It’s not only up to doctors and biologists to find the cure; it’s a job for all of us.

Photo: Fuse

Posted by: Heather Millar at 11:44 am

Wednesday, February 15, 2012

Happy Chemo-versary to me

By Heather Millar

Cancer-versary

Last Friday marked exactly one year since I finished chemotherapy. I’m calling it my “chemo-versary.” I took myself out for lunch and allowed myself to have a couple of glasses of wine with dinner. (There’s quite a lot of data that shows more than three drinks a week may increase the risk of breast cancer recurrence.)

Of course, this “chemo-versary” is different from my “cancer-versary,” July 15, 2010, the day I was diagnosed with early stage breast cancer. This, in turn, is separate from the day of my first lumpectomy (September 7, 2010), or the day I had a second surgery to make sure they got out all the cancer (March 8, 2011). And that is different from the day that I started chemo (October 28, 2010), or the day that I started radiation (April 19, 2011) or the day that I finished radiation (June 9, 2011), or the day, (October 10, 2011), that I finished infusions of monoclonal antibodies.

My mental calendar used to be crowded with birthdays and holidays. To that, I’ve now added all these cancer markers.

I know people who make big gestures when they finish chemo, or when they finish “active treatment.” They have a huge party and invite all their friends. They go on that Hawaiian trip or that mountain vacation that they’ve always wanted to experience. They do something adventurous, like parachuting out of a plane or running a footrace, so that they can cross one more thing off their “bucket list.”

I am not a shy person; I rarely stop talking. And I love to give parties. Yet I have yet to throw the big cancer bash. When I was just finishing chemo, I didn’t feel well enough to clean up the house and organize hors d’oeuvres and drinks for my friends. But I thought about it. I’m still thinking about it.

I’d be surprised if most cancer patients didn’t do so, too. Or at least, I bet they think about somehow marking the important dates of their cancer experience. This isn’t just self-involved navel gazing. Marking days is one way that we humans try to make sense of lots of mysteries: being born, getting married, graduating from school and embarking on adult life, becoming a parent or grandparent, yes, being diagnosed with cancer and surviving cancer treatment.

The market seems to bear me out on this: Various websites sell gifts and jewelry to mark your special cancer dates. Other vendors not only sell mementos, but encourage survivors to post their stories.

Maybe it’s different if you’ve lived through several recurrences, or if your cancer has metastasized — that is, spread to several parts of your body. Maybe, then, there are too many beginnings and endings and milestones to remember.

As my cancer dates roll by, they give me a chance to reflect and to give thanks for being here to reflect, to remember how far I’ve come.

A year ago, I was sick, exhausted, stressed out, and facing eight more months of active treatment. The last 18 months have been tough: I was diagnosed just a few weeks before moving from Brooklyn, New York to my hometown of San Francisco, California. My husband Pete and I joked that we were just trying to see how many stressors we could put on our marriage: a cross-country move, our then 9-year-old daughter Erin starting a new school, a major illness, a home renovation, a loss of income as my cancer treatment made me too sick to work.

But now, it’s a year later and we’re OK. I just had my oncology check-up and everything seems to be fine; fingers crossed. The contractors are long gone. My husband and my daughter seem happy with their new West Coast lives. I’m writing for magazines again, and continuing to post at My Left Breast. I’m honored to be joining the WebMD team to blog about the cancer patient experience.

Let me know about your questions and concerns, your stories. The beauty of the Web is that this blog can be a conversation. Here’s to marking our cancer-versaries together.

Photo: Stockbyte

Posted by: Heather Millar at 12:19 pm

Monday, February 13, 2012

Losing My Hair

By Amy Kalman, RN

Losing Your Hair

More than a week after surviving neurosurgery for a ruptured brain aneurysm, I was able to open my swollen my eyes to see. During my first trip to the bathroom I happened to look in the mirror and noticed both eyes bruised and my head covered in gauze with a long, thin clump of hair hanging out the right side. I removed the cling, investigated a shimmering horseshoe of staples in my once dark, shiny haired scalp, and met myself for the first time after a lifelong fixation with my appearance, particularly my hair. I proceeded to cover the whole mess with my favorite Yankees hat.

Three weeks after discharge from the hospital, my hairdresser shaved off the pathetic remains of those formerly thick long locks. The remainder of my image, identity and self expression were left lying on the floor of the salon only to be swept away minutes later.

It was a vulnerable, naked feeling. For many of us, our hair is our identity. It’s an expression of who we are; and with many types of chemotherapy, losing it is a completely unavoidable process. The loss associated with chemotherapy happens with different timing and in a different manner than my own, and may include losing body hair as well (eyebrows, eyelashes, etc.). There is a chance that your tresses will initially grow back a different texture or color, but in time your hair will very likely return to pre-treatment appearance.

Give yourself the opportunity, during the time you’re receiving treatment, to reflect on your uniqueness beyond external appearance. During the period I went smooth on top I learned to be thankful for my beating heart, expanding and contracting lungs, and a second chance to use them both with love and appreciation. Excessive attention to what we look like can prevent us from identifying the most important priorities in our lives. My guess is that your loved ones, family and friends are at the top of your priority list, along with love for and from them. I’m sure almost any cancer survivor will tell you that during their stage of baldheadedness, they had an abundance of emotional support available to them from loved ones.

Having a day where you feel your confidence plummeting? Feeling like a victim? Sadness creeping in? I refer you to a study done by Yale University indicating those without hair are seen as most intelligent—so wear it proudly! Whether you choose no intervention, shaving your remaining hair, wearing a scarf or wig to deal with your hair loss, as both the nurse and the patient, I must remind you that when your hair has grown back, the most important part of your story is that you’re a Survivor.

Have you lost your hair due to cancer or some other medical treatment? How did it make you feel? Share your thoughts in the comments below.

Photo: iStockphoto

Posted by: Amy Kalman, RN at 10:46 am

Wednesday, February 8, 2012

Keep Your Eye on the Ball

By Dave Balch

When I was about 11 I joined little league and played baseball. Well, that’s not exactly true… I TRIED to play baseball. I was a good runner, but my batting and catching weren’t so hot, and when you’re talking baseball that pretty much kills the deal. But I digress…

During batting practice one day I kept swinging the bat but missing the ball. This kept happening over and over until the coach came over to me and said, “You’re not watching the ball as it’s coming toward you. You can’t hit it if you don’t look at it. Keep your eye on the ball.” I realized that I wasn’t looking at the ball because I was distracted by the fear that it might hit me. To put it another way, hitting the ball was the goal and if I didn’t keep focused on the ball I couldn’t hit it.

The very next pitch I did what he said, though, and hit the ball solidly over the pitcher’s head. Even today I can still feel that satisfying thump and hear the loud crack of the bat when I hit it. It felt good. I was proud. (The fact that I can still remember that one moment tells you something about how many times I was successful at bat!)

What does this have to do with stress? Everything, because as you are living your stressful life, dealing with cancer, and trying to cope sometimes the stressful things we are dealing with get the better of us and we get caught up in them. We get so upset about one particular situation or incident that we get distracted from the ultimate goal, which is to deal effectively with our lives.

I, too, am trying to control my own stress, which is caused by my wife’s cancer and welfare as well as too much month left over after the end of the money. I try to practice what I preach and most of the time I’m doing ok, but last night I was packing for a speaking engagement and I couldn’t find my toothpaste. I lost it. I was frustrated because I had left my shaving kit in a hotel room during a trip last week and I just couldn’t believe that I had left my toothpaste as well. Suddenly I was slamming doors and throwing my clothes around… I had taken my eye off the ball.

After about five minutes of this nonsense my wife came in and said, “You’re going to give yourself a stroke!”

She was right. It was stupid and I knew it. And it was over.

I remembered to watch the ball, and the rest of my packing went smoothly. SIDE NOTE: the toothpaste was right where it was supposed to be, with all of my other liquids and pastes in the little clear plastic bag required by airport security. DOH!

It’s very easy to get distracted and let little things get to you. Coping with cancer and the related stress is a tricky business, so keep at it and remember to watch the ball!

Posted by: Dave Balch at 3:37 pm

Monday, January 30, 2012

What is Great Cancer Care?

By Richard Frank, MD

I remember meeting Mr. Albert and his wife about four years ago. In their 70’s, they had been married for nearly 50 years and still couldn’t bear to be apart for very long. He was seeing me because he had recently been diagnosed with lung cancer. A persistent cough led to an X-Ray and then a CAT scan. The tumor in his chest was large and could not be surgically removed. I had reviewed his records in anticipation of seeing him and was prepared to talk about the treatment of stage III lung cancer, which involved chemotherapy and radiation given concurrently.

Bert took his position on my examination table; his wife Margie sat close by. He wore an anxious but resolute expression; she had her heart in her mouth and was very scared about what I was going to say. Still, she was hopeful, had a great deal of faith in God and told me they would make it together, whatever the challenges. I then took his medical history and examined him. I explained the diagnosis, the different stages of lung cancer and that while stage IIIB is not the most advanced stage (which is stage IV, when the cancer has spread to another part of the body) and that some patients may be cured, many unfortunately are not. “But there is a chance?” Margie asked as tears streamed down her face. “Yes, absolutely,” I replied.

Just then, Bert said, almost in passing, “You know, I forgot to mention that I have been getting headaches. They don’t bother me much but I never got them before.” I immediately developed a sinking feeling in my stomach. “I see…I think we should have Bert get an MRI of his brain. I know he had a CAT scan that showed no cancer but I just want to be sure.” A look of shock broke over Margie’s face as she considered, just for a moment, an even worse scenario than the one they were already trying to come to terms with.  I immediately did two things: 1) led them into the office of one of our oncology counselors for emotional support and 2) ordered an MRI to be done stat.

Bert went for the MRI while Margie was comforted by Michelle Dailey, LMFT, an experienced family therapist who would ultimately support them through years of battling lung cancer.  Meanwhile, in another office, I received the result I feared:  Bert’s cancer had spread to his brain, meaning that he had stage IV cancer and the plan we had discussed would have to be changed: he would first need brain radiation. This finding also meant that Bert’s cancer was not curable. I had to somehow deliver devastating news and avoid Margie’s collapse.

I led them back into my examination room and girded for the very difficult conversation ahead. This also meant having Michelle at their side so that they would not have to leave my office overwhelmed and feeling helpless. I told them the new findings and the new strategy and answered their questions about the prognosis. They cried and hugged and we talked it out, trying to be realistic and hopeful at the same time.

Bert lived nearly three years, mostly with an excellent quality of life. They traveled and lived life to its fullest. But what made their cancer care great was not the quality of the medical care they received, not the chemotherapy or the radiation. What made it great was that they felt cared for by their cancer care providers throughout their experience. They had individual counseling, attended patient support groups and after Bert died, Margie attended our bereavement group; all of these without charge as they are services provided at our center.

Great cancer care is about much more than surgery, chemotherapy or radiation. It is beyond “the best” hospital and “the top” doctor. It is about being cared for and feeling supported emotionally throughout the most difficult time in one’s life. That is the most challenging part of delivering great cancer care. But it is not advertised and it is not sought after initially. In fact, many cancer patients never receive the emotional support they need and do not even know what they are missing.

How did you feel about your (or a loved one’s) cancer care? Did you feel like you got the emotional as well as the medical support you needed? What do you wish the doctors and other medical professionals had done differently? Share your thoughts in the comments below or in our Cancer community.

Posted by: Richard C. Frank, MD at 11:47 am

Friday, January 27, 2012

Fatigue

By Amy Kalman, RN

“I’m so exhausted, I just can’t sleep enough” is a statement I hear from nearly every cancer patient I care for, regardless of diagnosis. Absence of energy can affect quality of life and your determination to complete treatment successfully.

This chronic fatigue, which tends to progressively worsen during the weeks of radiation therapy, can be caused by several factors, including anxiety and stress, medication side effects, anemia, pain and dietary habits. Here’s a list of some things that you can do to help improve and sustain your energy level.

Tip 1: It is important to let your Oncologist know about your lowered energy level. They may have medical and pharmacological therapies available to help restore your physical and emotional strength to a more acceptable level.

Tip 2: Design a schedule that includes a scheduled consistent waking time, frequent breaks for rest, and plenty of sleep. Brief naps (15-20 minutes), an option even if you must continue to work during treatment, can provide your body with a period of recovery time. You might consider speaking with your supervisor about arranging for an abbreviated schedule, the option to work from home, or taking medical leave.

Tip 3: Limit your daily to-do list! Allow your support team of family and close friends to assist you with responsibilities such as house cleaning, carpooling, and errands whenever possible. In addition to giving them the opportunity to contribute to your wellness and healing, it will permit you time for stress-reducing activities such as pursuing hobbies, listening to relaxation CD’s, meditation, and more.

Tip 4: Though it may sound counterintuitive, continue your normal fitness routine…at least as much as you can tolerate. If exercise is not a regular part of your agenda, consider a daily gentle walk with a friend or family member. The American Cancer Society promotes strength and fitness programs for improvement in quality of life, physical and psychological well-being for oncology patients.

Tip 5: Cut caffeine, nicotine and alcohol intake. According to the Oncology Nursing Society, these are key non-pharmacological therapies in improving energy level during cancer treatment. Caffeine is a stimulant and alcohol consumption causes rebound wakefulness as it wears off. According to the American Society for Radiation Oncology, smoking during radiation treatment can reduce your overall survival rate.

Tip 6: Communicate with an Oncology Social Worker at your treatment center. They can provide you and your family with resources available for coping with your diagnosis.

Though it may be difficult to imagine now, your energy will return gradually in the weeks after completion of a cycle of treatment.

Posted by: Amy Kalman, RN at 1:43 pm

Monday, January 23, 2012

Caregiving Defined

By Dave Balch

It doesn’t matter what you’re doing, whether it’s clearing snow from the porch or running a marathon, it is always a good idea to know the primary, overriding objective of the task. Why? Because keeping the main objective in mind may alter the way you actually perform the task. Are you trying to make the porch look nice or are you trying to keep the snow from tracking into the house on people’s shoes? Are you running the marathon to improve your health or to win?

“What difference does it make?” you ask. Maybe a huge difference, maybe not. If you are merely trying to keep snow from tracking into the house, simply clearing the path to the door may be enough. Why go to all the extra work of clearing the entire porch when it isn’t necessary to achieve the objective? If you are running simply to improve your health, you don’t have to run as fast; in fact, slower may actually be better!

The same is true of caregiving. We caregivers have way too much to do, and way too much stress and pressure to do it all. What is it all about, anyway? How can we take off a little of the pressure? How can we make our jobs a little easier? When you boil it down to the very basics, the single most important task of caregiving, in my opinion; in fact its very definition, is to “reduce stress” on the patient. Period. Everything we do should be based around that simple concept. I try to keep that in mind every day, and it helps guide my thinking and my activities.

Here’s the tricky part: every patient is different, so reducing stress may be different for your patient than mine. I wanted to do all the scheduling and driving in order to make it easier for my wife, and she loved the fact that she didn’t have to worry about it! I was reducing her stress, so I was doing my job.

On the other side of the issue, I recently spoke to a man whose wife was going through breast cancer treatment and she wanted to do everything herself; she didn’t even want him to go with her to treatments or appointments. If he had insisted on doing it all and going with her as I did with my wife, that would have INCREASED her stress rather than reducing it.

The second point, then, is to concentrate on things that actually stress your patient rather than the things that you THINK stress your patient or that SHOULD stress your patient. This is about them, not about you.

Some people find it very stressful to talk about their situation with others and to hear the inevitable comments such as: “I’m so sorry” or “What can I do to help?” or “Here’s what happened to my friend…” or “I knew someone that was in your situation and they died.” (Really, people say things like that!) Others find it comforting to talk about it and the more they talk the better they feel. What should you do? Should you take over the responsibility to communicate with family and friends or let your patient do it? The answer is: it depends. If your patient finds it stressful then you should do it, end of discussion. What if YOU find it stressful? Do it anyway.

This brings up point number three: sometimes you’ve got to do things you don’t like to do in the name of reducing stress on your patient. Do them anyway, because when all is said and done you will feel a sense of pride and accomplishment and, more importantly, you will have succeeded in reducing your patient’s stress.

We do have to take care of ourselves, though, so taking on a task that is too stressful could be difficult to bear considering all of our other responsibilities. There is an option: find another way to do it by either changing your method or finding help.

Point number four, then, is that taking responsibility for tasks that are stressful for your patient is different than actually doing them yourself. If you need or want help, get it. If you find an alternative way of doing something that makes it less stressful for YOU, do it that way. Remember the primary objective: reduce stress on your patient. That doesn’t necessarily mean doing everything yourself, but rather finding a way to get stressful things done so that your patient doesn’t have to do them.

This is the power of keeping the ultimate objective in mind – it can change the way you think about things and how you go about doing them.

Posted by: Dave Balch at 4:01 pm

Friday, January 13, 2012

Building a Support Team

By Amy Kalman, RN

Stop for a moment and think about an achievement and disappointment that you have experienced in life. Regardless of success or failure, you likely received some form of support from friends or family, and in some instances both. They were either cheering you in victory or opening their arms for a warm, comforting hug in a moment of difficulty. Either way, you recognize that the journey would have been much more difficult if you had done it all alone. Creation of a support team applies this philosophy to your experience with cancer.

Bringing a trusted friend or family member to appointments provides you with emotional support when stress or anxiety seems overwhelming. Having company during tests and treatments can make a potentially painful or uncomfortable experience tolerable, even positive. Spouses, parents, siblings or adult children can act as a second set of eyes and ears. And if equipped with pen and paper, they can also be your note taker. With so much information on your mind to process, your support team can also serve as an excellent source of information that you may forget to provide your physician or other healthcare providers. Friends, family, and members of your religious affiliation (church, synagogue, mosque, or other prayer center) can also tend to daily responsibilities such as food preparation, dog walking, and housecleaning in addition to providing spiritual encouragement.

It is important to express your needs and communicate with your support team in an assertive and upfront manner. In other words…tell them clearly what you want them to do! As a result, in addition to improving some of life’s stressors, your support team can alleviate feelings of restlessness, tension, irritability and fear. In return you are giving your loved ones a chance to contribute to your recovery as well as an opportunity to improve your own physical, mental and spiritual wellbeing!

How has your support system helped you? Share your thoughts in the comments below or in our Cancer community.

Posted by: Amy Kalman, RN at 1:02 pm

Friday, January 6, 2012

Using My Wife’s Head

By Dave Balch

This isn’t the first time I’ve harped on trying to find the good in a bad situation, and it probably won’t be the last. As long as I have good examples I will continue to write about it, and today I have a great example.

One night about 7:30 p.m. I was in the kitchen when I heard a loud thud and the floor shook. I ran in the direction of the sound and found my wife, Chris, unconscious on the bathroom floor with her head against a tiled step into the shower. Blood was dripping onto the floor.

It was immediately evident that she had fallen for an unknown reason (later I found out she tripped over a cat) and cracked her head against the shower step.

I tried to remain calm even though I was screaming in my head and called 911. They came, put her in a neck brace, and took her to a hospital nearby. We waited for tests, then got results which indicated more tests… turned out that everything was ok; she didn’t even need stitches. It was quite a scare, though. We got home at 3:00am.

All’s well that ends well, right?

This has become an exercise in looking for the good in a bad situation:

1. This is the easy one: her injuries could have been a lot worse, including a broken neck (which they suspected, necessitating the 2nd round of tests).

2. I was home when this happened. I travel a lot for speaking engagements, so this is a VERY good thing.

3. The weather was good – what if there had been a bad snow storm or heavy fog, both of which we get where we live?

4. Her head missed the glass shower door by inches… if she had broken it, imagine what could have happened. Besides, do you have any idea how much it costs to replace that kind of door? (That was a joke, by the way…)

5. A good hospital was available to take her. Given the options we had, I shudder to think of what her experience would have been at the hospital that was the 2nd choice.

6. I got a good story and article out of the experience, and we can all learn from it.

The point here is that you can always find some good in a situation, even if it’s dire. When Chris was first diagnosed with breast cancer, we chose to look at it like this: she was otherwise healthy and would do well during treatment, we caught it early, and so on.

Find the good: it isn’t always easy to find, but it IS there. It will help you put your bad news in perspective.

Posted by: Dave Balch at 1:50 pm

Tuesday, December 27, 2011

Bilateral Mastectomy for Breast Cancer

By Richard C. Frank, MD

When a famous person is affected by illness, especially one as serious as cancer, they may publicly share their experiences and when they do, the world takes note. When First Lady Betty Ford went public with the her battle with breast cancer that included a mastectomy (removal of the whole breast) in the 1970s, the “C word” came out of the closet, igniting a revolution in patient advocacy. Mrs. Ford’s courage led to women taking charge and demanding less disfiguring surgery, breast preservation when possible and attention to their physical and emotional needs.

Many years of research and the brave participation of thousands of women in clinical trials proved that for local control of cancer in the breast, the less-invasive “lumpectomy” (removal of only the cancerous tumor) followed by radiation to the breast was equal in efficacy to mastectomy. This changed the approach to breast cancer for millions of women and has allowed the vast majority to preserve their breasts despite a cancer diagnosis.

Recently, however, the pendulum has begun to swing back and an increasing number of women are choosing to undergo mastectomy or even bilateral mastectomy (removal of both breasts), for a variety of reasons. Two women in the public eye,  actress Christina Applegate and E! News host Giuliana Rancic have publicly discussed their decision to undergo bilateral mastectomy. Their reasons differed and will be discussed below.

For women who have an inherited predisposition to breast cancer, removing both breasts can reduce the risk of developing breast cancer by over 90%. An inherited predisposition is indicated by a strong family history of breast cancer. Many (but not all) such women will be found to have an abnormality or mutation in the breast and ovarian cancer susceptibility genes BRCA1 and BRCA2. This was the case for Ms. Applegate. Her decision to remove both breasts was purely preventative; she did not have breast cancer.

For women diagnosed with breast cancer, the cancer will be one of two types: noninvasive or invasive. A non-invasive cancer (also called DCIS, which stands for ductal carcinoma in-situ) means that when the pathologist analyzes the specimen, the cancer is well-contained and does not penetrate the tissue barriers around it.  Such a cancer does not have the ability to spread (metastasize) to other parts of the body, so it is curable by treatment of the breast with lumpectomy and radiation or mastectomy. Regardless of which procedure is chosen, however, the hormone therapy tamoxifen is often recommended in order to prevent a recurrence of breast cancer. If both breasts are removed, then there would be no need for tamoxifen or radiation. Some women who choose mastectomy for the affected breast are also choosing to undergo a prophylactic mastectomy in the unaffected breast. One of the main reasons given is that they will “never have to do this again.”

Although I do not know the details of Ms. Rancic’s cancer, from her interview it would seem that she had non-invasive cancer in both breasts and that a bilateral mastectomy would relieve her of the need for any further therapy. It would also provide psychological relief by eliminating the need to undergo regular breast cancer screenings with mammograms, ultrasounds, or MRIs.

On the other hand, when the pathologist deems that a cancer is “invasive,” this means that it has the potential to spread to other parts of the body. Regardless of which treatment is chosen for the breast (lumpectomy plus radiation or mastectomy), hormone therapy, and/or chemotherapy may be indicated to lower the risk of metastasis  as well as the chances of a new cancer developing in the unaffected breast.

As discussed for noninvasive breast cancer, some women with invasive breast cancer choose to have a bilateral mastectomy. This will not affect the risk of metastasis from the original cancer or change the recommendation for hormonal therapy or chemotherapy. It will, however, greatly reduce the chances of developing a new breast cancer and eliminate the need for ongoing breast cancer screenings.

The bilateral mastectomy is not without its negative consequences, which must be considered. Reconstructive surgery can cause discomfort and involve many months of treatment. Some women may experience an altered body image and effects on sexuality. There are many other considerations, some of which are mentioned in the above links.

Because of space limitations and the complexity and sensitivity of this topic, I cannot fully do it justice. Nothing can replace speaking with your physicians about the risks and benefits of procedures such as the bilateral mastectomy.

Posted by: Richard C. Frank, MD at 11:37 am