Living Well With Metastatic Breast Cancer

This morning, I was fortunate enough to finally meet “Bear,” the male breast cancer survivor I told you about yesterday. He was exactly as described … tall, kind, and strong. I told him that he had touched so many on my staff, and that even though we hadn’t met, I felt compelled to share a small part of his story in order to shed light on this under-reported patient population. I made him promise to keep in touch, so stay tuned for more reporting on male breast cancer, and “Bear” at www.curetoday.com.

Welcome Back, Kotter” and

Today, actress Marcia Strassman (whose roles include Gabe Kaplan’s wife in “the mother in “Honey, I Shrunk the Kids”) spoke to a group of breast cancer survivors about her personal experience with metastatic breast cancer and the importance of medication compliance.

In March 2007, Marcia discovered a large mound on her left breast and immediately went to her gynecologist for a diagnosis. Unfortunately, not only did she leave her doctor’s office with a diagnosis, but following surgery, she was told that her cancer had spread to the bone.

Marcia is currently on an aromatase inhibitor to control the disease and receives a bisphosphonate in order to strengthen her bones, which can become fragile due to the aromatase inhibitor. As of today, all of her scans show there is no further damage to her bones.

At the breast cancer advocate luncheon, Marcia spoke about her personal experience and added a special message to those men and women whose cancer has spread to the bone. She wanted to make sure that patients understand the benefits and risks associated with not taking their medicine, and her message was delivered passionately and succinctly.

Pennsylvania

After her talk, Adam Brufsky, MD, PhD, a breast cancer oncologist and researcher from , gave an informative talk about bone metastases in breast cancer patients. He noted that between 65 and 75 percent of those breast cancer patients, whose cancer recurs, discover that the cancer has gone to the bone.

Elizabeth

When I heard this statistic, I was reminded of Elizabeth Edwards and her battle with recurrent breast cancer. Like , many people with bone mets live long lives post-diagnosis. Brufsky said, “Many people … who have disease in their bones can live exceptionally well for an exceptionally long time.”

Very inspiring news, indeed.

—Published 12.13.08

Male Breast Cancer: Not Pink and Not Enough Awareness

A gentleman came to our exhibit yesterday to tell us how important CURE had been to him when he was undergoing treatment for breast cancer. With tears in his eyes, he told several of my colleagues that our magazine offered him information and support which hadn’t been readily available to him previously. I didn’t get the opportunity to meet him, but he apparently touched the hearts of several CURE staffers, because I kept hearing about “this wonderful man who came by to say, ‘thank you.’ ”

Apparently, this gentleman was very tall, kind-looking, walked with a cane and went by the nickname, “Bear.” He had a pink button on his blazer that identified him as a patient advocate for the Alamo Breast Cancer Foundation. This encounter with “Bear” made me think about what it must be like to be a man, diagnosed with a disease primarily associated with women.

In the sessions that I’ve attended, no one has mentioned men. Although breast cancer is almost 100 times more likely to occur in women, surely we all understand that men, because they also have breast tissue, can get this disease. In 2008, the American Cancer Society estimates about 1,990 cases of invasive breast cancer will be diagnosed in men. On the flip side, the ACS estimates about 182,460 cases of breast cancer will be diagnosed in women this year, and while the number of cases in men is one percent of that, I’ll bet if your dad, brother, or son was one of that one percent, that statistic would surely feel more like 100 percent.

So, male breast cancer doesn’t get much “play” even at an international meeting of this size, due to the incredibly small number of men diagnosed each year. I get it. What I didn’t know is that there are very few, if any, investigational trials for male breast cancer because, once again, the patient population is so small. I didn’t know that men are therefore offered the same treatment protocols as their female counterparts.

Texas

When I was a kid, my grandmother, an elegant and powerful woman, was diagnosed with breast cancer. The family immediately “circled the wagons,” as they say in , to provide her with all of the love and support necessary to help her through a very difficult radical mastectomy. Her brother, Bob, couldn’t believe all of the attention that was being lavished upon her, and one day he blurted out, “Ah, come on, it’s not that bad. I had breast cancer when I was in the military years ago, and I’m just fine!” My Uncle Bob was very competitive with his sister, and everyone thought that his outburst was a mere act of jealousy because obviously men don’t “get breast cancer.”

In hearing stories about men who, until only recently, kept quiet about their breast cancer diagnosis because they didn’t want to put up with the embarrassment of being labeled with a “woman’s cancer,” I wonder about the possible disservice our family paid to my Uncle Bob.

Next October, when the world turns pink, take a moment to consider the brave men, like Bear, who speak out in order to educate the rest of us about male breast cancer. I would also like to propose that we create a new ribbon for these men … perhaps pink and black stripes? Just a thought.

—Published 12.12.08

Being Your Own Advocate

As I made my way to the convention center this morning, I heard dialects from every country imaginable. Over the course of the next few days, more than 9,000 people (a new record) from all over the world are expected to converge upon this Texas town, to share critical information that will improve breast cancer treatments worldwide.

In an opening statement, AACR President Raymond N. Dubois, MD, PhD, told attendees, “We have to remember that breast cancer is the enemy and that we need to work more closely together … to have as much impact on cancer as possible.” He encouraged doctors to contribute to the meetings and discussions, and said, “Hopefully, we’ll come up with some great ideas to take back to our home institutions.”

The general sessions were filled to capacity. Most of the smaller sessions, which were capped at around 200, had another 100 or so attendees milling about outside, hoping to get in, but in the meantime, mingling and discussing the conference with their peers.

Listening the sharing of ideas gave me hope that attendees were taking Dubois’s message to heart.

In between sessions, I ran into the executive director of a non-profit, and a personal friend, who confided that her cancer had returned and that she was traveling regularly to another state in order to participate in a clinical trial. This is her third bout of cancer in the past ten or 11 years, and she is trying everything possible to knock it out once and for all.

I asked her how it was going, and she told me how awful it was this time, as her new medical team seemed unwilling to address her severe chemotherapy-induced nausea and vomiting. The research facility where she is being treated suggested that she enroll in a clinical trial to combat these symptoms but seemed less willing to prescribe the plethora of drugs already available. “I’m already IN a clinical trial,” she protested. “I shouldn’t have to feel this rotten in order to participate.”

To me, that conversation demonstrated how important it is to be a strong and determined self advocate while going through treatment. My oncologist once said that it is easy for doctors to become so fixated on ridding patients of their cancer, they sometimes forget to consider the devastation that treatment can cause to a patient’s well-being. It is not only your right, but your responsibility to tell your medical team how you feel, what you need, and how your treatment is impacting your quality of life.

—Published 12.11.08

Finding Inspiration at San Antonio Breast Cancer Symposium

Hi CURE readers! For the second year running, we are proud to bring you daily updates from the San Antonio Breast Cancer Symposium (SABCS). For 31 years, this program has provided ground-breaking information on breast cancer to physicians and researchers, and I believe that while many organizations provide updates, most don't attempt to tackle it as CURE is—as it happens. The CURE team is here "en masse" to arm you with the latest information on breast cancer. Our scientific affairs team will be scouring the conference, looking for the newest, emerging data to report; our editorial staff will be delivering breaking news as it happens; our editor-at-large will be reporting on advocacy and survivorship issues; and I will be offering the perspective of a breast cancer survivor—providing "color commentary" if you will, on what it's like to attend a meeting of this magnitude.

This is my third year at SABCS. Last year, when I was preparing for the trip, my then 12-year-old son asked, “Mom, don’t oncologists celebrate the holidays?” As I packed, I asked myself the same question. Once I arrived, however, my question was answered. The researchers, physicians, and patient advocates, who travel from all over the country (all over the world for that matter) in the middle of the all-too-hectic holiday season, are here for several reasons—they are passionate about finding a cure for breast cancer, they want to share their findings with others to advance treatment, and they are eager to take what they’ve learned back to their communities so more of us can live longer, happier lives as survivors.

I hope that you are educated and inspired by what you read in the coming days. There's much more to come!

—Published 12.10.08

Read more of CURE's coverage of the 31st annual San Antonio Breast Cancer Symposium at https://www.curetoday.com/view/living-well-with-metastatic-breast-cancer