Where are we in breast cancer research?

BY KATHY LATOUR | DECEMBER 13, 2010

One of my goals for this year's SABCS was to get a sense of where we are from those who have been coming to this meeting for a number of years.

The result was somewhat predictable in that the physicians see more progress than the advocate/survivors – except perhaps for those survivors who have benefited from one or more of the findings in the treatment area over the past 10 years.

Overall, the physicians see progress in diagnostics and treatment - two areas summed up by Debu Tripathy, MD, professor of medicine and co-leader of the Women's Cancer Program at the University of Southern California Norris Comprehensive Cancer Center, and John Pippen, MD, a medical oncologist at Baylor Sammons Cancer Center in Dallas.

Tripathy, who is also editor-in-chief of CURE, has not missed a meeting since 1989 when he began attending as a fellow.

"Many things have happened that have made an impact," he says. "There has been progress, definitely more than in the preceding 20 years. In the last few years, we have two drugs for prevention that have been approved and better imaging techniques - neither perfect but progress. We have shown that preventive surgery helps women with the BRCA1 and 2 mutations. We have approved new treatments in the adjuvant setting that improved outcomes: taxanes, dose-dense therapy and Herceptin for HER2-positive cancers. These have lowered the risk of recurrence to only 10 to 15 percent - half of what it used to be. 0ur biggest challenge is still metastatic cancer."

John Pippen, who has been attending for 15 years, points to molecular information as the greatest breakthrough.

"The last two or three years, I have come away feeling much more positive. The era of molecular medicine means being able to look at a tumor ahead of time to maximize the effectiveness of treatment. This minimizes toxicity and cost."

On the other side, Susan Love, MD, was pessimistic about the meeting, wishing more of the research looked at the causes of the disease and how to stop it.

"We are stuck in trying to make the treatments the best we can instead of finding the cause and stopping it," she says.

Love's sentiment was voiced by many of the advocates, who are asking for information about prevention for the next generation when their daughters may face the risk of developing breast cancer.

But as Dr. Tripathy points out, it's at SABCS where all the disciplines come together to learn from each other in hopes of going home with new ideas about ways to end this disease.

• Dating Teleconference Today
• Make a difference
• For the Cure to a broken heart
• An update on the Cancer Genome Atlas for breast cancer
• Video blog: Test could spare some DCIS patients from radiation

Choosing an Oncologist

BY KATHY LATOUR | AUGUST 26, 2010

This month I had reason to think about the past two decades of cancer research when I interviewed my own oncologist about treatment for early-stage breast cancer. Bob Mennel, MD, was the oncologist recommended to me by my Dallas surgeon in 1986 after my mastectomy revealed I had 4 centimeters of ugly cancer with one positive lymph node. For those of you who want more detail, here is what I also learned about my tumor back then: grade (poorly differentiated), proliferation (they did what was called an S-phase but I'll be darned if I remember the number), estrogen (slightly positive on a completely different scale than we use now), Her2neu (predated that one), Oncotype DX (predated that one).

I was really lucky that Mennel was recommended to me. I would like to say I interviewed many docs and thoughtfully chose him based on his personality and knowledge, but, come on, I was terrified and we patients had not been told we had choices back then. I was just lucky.

But now I know I got one of the best, because in the ensuing 24 years since my diagnosis of invasive breast cancer (stage 2b), I have learned a lot about oncologists. Clearly the medical community agrees with my assessment because Bob Mennel is now the director of clinical oncology at Baylor Sammons Cancer Center in Dallas.

But it was more than his expert knowledge that was important, it was his ability to explain things in a way that I could hear through my terror. It was also the caring way he dealt with the panic attacks that followed me for the decade after my diagnosis and treatment.

After my interview with Mennel for the current story on treating early stage breast cancer, I realized how far we have come and how much changes so fast for these men and women who try to stay on top of what will keep us alive. The story in this issue focuses on the new ways to determine a woman's risk for recurrence if she is estrogen positive, which includes 75 percent of the women diagnosed. In fact, the formula for who gets chemotherapy for this subset has become so complicated that there are Internet tools to help oncologists distill information for the best options.

While I was interviewing Bob Mennel about this, he mentioned that he had talked with his oncology fellows (you know, the baby oncs) only that week about how complicated the information has become, going over all the options that have to be considered. He then told them how many tests were there beyond basic staging when he was a fellow more than 30 years ago – none.

So since my diagnosis he has had to constantly update his education to stay on top of the newest information about that nasty cancer cell, which can elude even the best drugs. He also has the thousands of women he has treated who gave him his own research study of sorts as he watched how they responded to treatment.

I was ruminating on how important my oncologist has been in my life when I happened on the new ASCO patient website where I opened a blog called "On Being Wrong" written by the current president of ASCO, George W. Sledge, Jr. MD, a professor of oncology at Indiana University Simon Cancer Center. He is also a researcher who has studied molecular and tumor biology, growth factors, and anti-angiogenic therapy related to breast cancer.

His blog topic was about being wrong, not something we think of oncologists studying much and certainly never admitting to.

Sledge really put something in perspective for me, and that is how hard it must be for these physicians to juggle all the facts that come their way from studies, clinical trials, and their patients. How do they assess a treatment that they adopted because of a clinical trial result only to find that it, ultimately, will not impact long-term survival. It's what he calls a "thicket of value judgments." For every therapy, Sledge says, physicians are faced with cost and value, possible side effects, and the biggest question: Does prolonging time to progression improve quality of life or reduce suffering to any significant degree? This final question he follows with a parenthesis ("surprisingly difficult to measure, or to know what the measurements mean").

Don't go looking for his answers to these questions because he doesn't provide any. This is fine with me since I already know there aren't any after watching friends grasp at all the "wrong" choices in treatment during the past 24 years. But with men like Mennel and Sledge on the clinical and research fronts, I know we have the best advocates available.

• Fertility takes center stage at SABCS
• Score one for the Army of Women
• Navigating through the complex web of clinical trials
• A sound and light show
• A biomarker for chemoprevention

When the mammogram is suspicious

BY KATHY LATOUR | MAY 12, 2010

OK, time for a teaching moment. My oldest friend Lynda had her annual mammogram this month, and on the Monday after she received a letter saying she needed to get back with them to explore something that was "probably benign."

Do they know what that kind of letter does to a woman? If you have had breast cancer you know that a truly suspicious mammogram results in a PHONE CALL from your gynecologist, who is the person the center contacts when there is probable cause to believe it could be cancer.

But women in the general population don't know that. They think any time they have a mammogram, breast cancer may be lurking. Lynda had some cysts removed nine years ago, and because she has gone through my experience, she was concerned and called on the mammogram center the day after she received the letter, Tuesday, and left a message for the nurse to get back with her. Nothing. Finally she called her gynecologist and left a message about the letter. Her doc called back immediately and told her that the mammography center had not called her, meaning it was probably nothing.

But the gyn called the mammography center on Lynda's behalf and had the radiologist look at the film. He thought it was scar tissue, but Lynda needed to check it out. She asked them to call Lynda.

So, with her doctor interceding, the mammography center finally called back and said that the first appointment they had was June 4, which will mean that, from the date of the letter, she will wait six weeks to get it checked out.

Again. I know, and any of you who have had a suspicious mammogram know, that something that looks really suspicious results in an "all hands on deck" response. But, again, Lynda didn't know that. There has to be a better way to communicate with women who need follow-up that tells them that it's a "no rush" situation and that they need to scheduled an appointment, but, again, it's not urgent!

There are ways to say, "you need to come back" as opposed to "you need to come back in immediately."

When I was diagnosed in 1986, my gyn sent me for my first mammogram after a physical exam when I pointed out a lump in my right breast that had a deep painful itching. She said not to wait and I went the next day. She called me the next morning with the news that my mammogram was "highly suspicious." I asked her what that meant and she said I probably had breast cancer and I needed to talk with a surgeon. She gave me some names and said this was urgent. Lynda is now calm, but there is still that nagging that it might be something. And she won't find out for two more weeks.

• Fertility takes center stage at SABCS
• Score one for the Army of Women
• Navigating through the complex web of clinical trials
• A sound and light show
• A biomarker for chemoprevention

Another friend with breast cancer

BY KATHY LATOUR | MARCH 30, 2010

For the past 25 years I have lived in the shadow of breast cancer. Since then, I have been both a willing and unwilling participant in the cancer story as it has unfolded in this country. It wasn't something I wanted to do; it was just timing. During those years there have been times when I celebrated progress and times when I bemoaned yet another finding that didn't pan out to be the great answer we wanted. Through it all, I have gotten the calls we survivors hate. It's either someone we don't know who says that a mutual friend told them to call – or as in the last two calls, friends have called to say they have been diagnosed.

First was Suzan Bruce who I blogged about last fall when she had a hat party in anticipation of pre operative chemotherapy for what appeared to be inflammatory breast cancer.

It's hard to take these calls, particularly when something happens that's either really good or really bad but the person doesn't have enough experience yet to know what it means. For example, when Suzan began chemotherapy, she was excited that the tumor was noticeably smaller after only a few treatments. I was elated. It meant she was a "responder." You learn quickly in cancer that either you respond or you don't and the results will be quickly tied to prognosis. When Suzan called to tell me that she could feel the difference in the size of her tumor, she didn't get why I was whoopping and hollering. It continued to shrink until it was all but gone by the time she had surgery. They even reassessed her tumor and decided it was not inflammatory. She is going through radiation with Zeloda right now, a series she will finish in early summer. She learned she carries the BRCA 2 gene, knowledge that caused her great pain because of her young daughter and the risk it means for her. But her response to the chemo means she has a much better prognosis than was originally thought. We celebrated.

Then a month ago I got a second call from an old friend, a friend, in fact, who was part of my support when I went through breast cancer 25 years ago. She moved to another state with her family shortly after I finished treatment and we had only had sporadic contact in the past decade. Then she too was diagnosed with what the docs said was inflammatory breast cancer. I was devastated. It was one of those calls where she didn't know enough about her diagnosis to be worried yet, and at one point in the discussion, I said, "has anyone used the word inflammatory."

"Yes," she said, "what does that mean?"

How do you answer that question? I just said it meant they didn't want to wait around before beginning chemotherapy, so she wasn't surprised when she began chemo before all her tests were back. My last call from her came after her oncologist called to tell her she needed her to come back immediately for the infusion of another drug called Herceptin because she was positive for Her2. What did that mean, she wanted to know?

I said it gave her another big gun in her arsenal and they wanted to use it quickly. And it was clearly a good move. In only a week her tumor was noticeably smaller and her oncologist was beginning to say it wasn't inflammatory, just a big tumor that was now on the way down in size. It was a good day.

I am now worried about that next call. Please tell me these things don't happen in threes.

• Fertility takes center stage at SABCS
• Score one for the Army of Women
• Navigating through the complex web of clinical trials
• A sound and light show
• A biomarker for chemoprevention

Getting the best cancer treatment

BY KATHY LATOUR | JANUARY 8, 2010

It's hard not to notice that cancer is big business these days. With the numbers of people being diagnosed and increasingly knowledgeable patients, it was only a matter of time before the inevitable advertising would appear from some of the elite national cancer centers touting their ability to keep you alive – or in some other way give you better treatment than anyone else.

The growing number of ads finally caught the attention of the media, and in December The New York Times ran a front-page story on advertising by nonprofit cancer centers, who, it seems, are not controlled by the same rules and regulations that affect medical devices, drugs or other cancer related material.

The ads detailed in the Times piece show how a little bit of truth can present a distorted picture of fact.

I also found myself having a few mixed reactions to the story since I have always felt that cancer needs as much ink as it can get. It's an "even bad publicity is good for cancer" attitude because it raises the visiblity of the disease. Then I get in an argument with myself. On the one hand, people reading these ads probably don't have cancer, and the positive is that if they are diagnosed, they may remember in the back of their mind that they saw some hospital's advertisement for how well they treat that cancer. This should result in a feeling that they should research where they want to be treated. On the other hand, will Joe Public think that the only way he will get good cancer treatment is to go to their center, no matter how far it is from home. Not true.

Just the weekend before the story ran, I was talking to a local journalist about cancer, and he asked me if I would recommend to a newly diagnosed person that they do not pass go and take off immediately for one of the top cancer centers in the country. I said it depended; I needed more information. I know that a cancer diagnosis can be easy or hard. Does the person have an often seen, run of the mill (if there is such a thing) cancer, or is it rare? Is it a straightforward pathology or is everyone arguing? I already wrote a blog about oncologists at the San Antonio Breast Cancer Symposium disagreeing about how to treat metastatic cancers. This is because metastasis is complicated and each case is unique. Treatment for many cancers requires the art of the practitioner as well as the science behind the drugs. In these cases, you bet I would recommend the person find the expert in that particular field. There is even some research that shows some cancers have better outcomes if the patient goes to a major cancer center.

What has to be weighed here is traveling far from home for treatment. It's a choice many have to make to begin with because they are in rural areas or areas not served by a comprehensive cancer center. But if you are in a city like Dallas, where we have more than one comprehensive cancer center, the treatment you will receive for one of the usual cancer diagnoses will probably be the same you would get from any cancer center. Cancer is exhausting and traveling for treatment adds cost and stress to an already unbearable time.

The Times writer added a sidebar that irked me more than the main article. The headline was Factors to Weigh in Deciding Where to Get Care and it recommended that in choosing a doctor patients look for a good fit, credentials, and someone with the human touch as the most important things to consider. It's great to have a sensitive oncologist, but if I have a rare cancer with small positive outcomes, I want the most educated, specialized, and egotistical guy in the country who hates to fail working for me.

Bottom line. If you are diagnosed with cancer, research the options. Look into it. There are a number of things that mark a good cancer treatment center from one that may not give you all that is available. Do they offer clinical trials? If you can see from the doctor you are talking to that he or she has never seen your kind of cancer, find the doctor who has, no matter how far you have to travel. And, as with all advertising, look at cancer ads with a grain of salt and just hope you will never be a consumer of this particular product.

• Fertility takes center stage at SABCS
• Score one for the Army of Women
• Navigating through the complex web of clinical trials
• A sound and light show
• A biomarker for chemoprevention

Hats off to no hair - and to being chemo sensitive

BY KATHY LATOUR | OCTOBER 30, 2009

I got one of those calls a few weeks ago. As the assistant to a friend who runs a private school, Suzan and I had met briefly in the past, but this time we were brought together by her news: breast cancer. At 48 and a mother to a 7-year-old, Suzan was keeping the information quiet until she and her husband Joost could determine exactly what they were dealing with and how to tell their daughter, Carey. The news wasn't good – what she thought was mastitis was instead advanced local breast cancer with skin involvement, stage 3B. Suzan and Joost began that whirlwind that is rushing to preoperative chemotherapy that such a diagnosis demands while at the same time Suzan tried to be present for her father who was entering hospice. Whew.

As soon as her friends were given the all clear, they hit high gear to help Suzan cope in what they knew would be her style – with humor and lots of color. Yesterday it was hat day. With hair loss looming now that she is at day 12 after her first chemo, a friend sent out the word that hats and other fun hair coverings were needed. As Suzan headed for home, she tried to find the place of light where she chooses to stay. But it had been a hard day when the little "what ifs" were arriving at warp speed. Then she arrived home and was met by Joost and Carey with squeals and excitement at the mounds of boxes and tissue that awaited her. New hats, old hats, practical hats, vintage hats, and one from a fellow survivor that she had worn on her 20th anniversary of survivorship – covered with pink feathers and tulle and outlandish in the best sense. The card told Suzan that this was for when she would celebrate her 20th year of survivorship. As Suzan and Carey, who had her own assortment of gift hats, played and modeled the hats, Joost took pictures. Suzan wrote a note to friends later about how remarkable it was to feel the kind of love and friendship that such a time brings. While I was sharing dinner with Suzan, Joost, and Carey last night, the conversation was light. My offering for head covering was a scarf that could be wrapped and wound and looked great on Suzan – the gypsy look, I call it, with big earrings to match. In this case the earrings I chose were rhinestone angels wings, knowing that this time is one when a few angels are welcomed. We chatted as Carey practiced tying her mother's scarves in multiple ways that had us laughing and enjoying the wonderful spontaneous moments that a 7-year-old can bring to any experience.

Then Suzan mentioned that she could already feel a distinct reduction in the size of the nodes under her arm. This was great news. Only 12 days into her first chemo and reduction in tumor mass was palpable. It could mean she has a chemo-sensitive tumor that will respond really well to chemo – which greatly improves her possible outcome. It was great news.

Suzan, being a creative type, has agreed to let me follow her and Joost and Carey for the next year as they go through breast cancer treatment and recovery. Suzan has already had a photographer friend begin documenting her story. She hopes that in telling her story she will be able to pass on the love and support she has already begun to receive.

• Fertility takes center stage at SABCS
• Score one for the Army of Women
• Navigating through the complex web of clinical trials
• A sound and light show
• A biomarker for chemoprevention

Ductal carcinoma in situ: Is it cancer?

BY KATHY LATOUR | SEPTEMBER 29, 2009

Ductal carcinoma in situ: Is it cancer?

The argument rages on about whether ductal carcinoma in situ (referred to here as "breast cancer light") should be treated as breast cancer when, some researchers argue, no one agrees on whether it will become bad breast cancer if left alone. First, a visual to help you see what we are talking about.

If you imagine the inside of the breasts to be like broccoli, the flowering part would be the lobules that hold milk to feed a baby, while the stalks are the ducts that carry the milk to the lobules. Cancer cells can be found in the ducts and in the lobules, but the most common location is the ducts. When the cancer is contained inside the ducts, it is called ductal carcinoma in situ (DCIS). When it has broken through the walls of the ducts into the surrounding tissue and blood supply, it is called invasive ductal carcinoma.

The invasive kind is what can kill us as it moves from the breast through the lymph system to vital organs, such as the lungs, bones, or brain, where it can set up shop and eventually takes over the organ. In situ breast cancer, if detected by one of a number of methods, is not deadly until it becomes invasive, which is the rub here because some folks say that it may never become invasive.

Before I state my case in this argument and because I believe in full disclosure, I have to say that I am definitely not your casual bystander in this discussion, having had both the big C and the little c in my cancer journey. My first diagnosis of breast cancer in 1986 at age 37 was clearly invasive, and surgery revealed I had one malignant lymph node under my arm, meaning the cancer had already left the breast and was romping elsewhere in my bloodstream. What followed was four months of chemotherapy followed by years of terror that it would come back.

Then in 2007, my annual mammogram on my remaining breast showed some calcifications, a fancy name for spots of dead cells, that in some instances indicated cancer. That biopsy came back DCIS in more than one spot in my breast.

Some friends found it strange that I was hoping for a clearly malignant pathology report, because I had already decided that if the report was benign I was going to fight to have the breast removed. There was one spot they couldn't biopsy and, well, I don't mess around with the word carcinoma in my life.

Which brings us to the latest comment from a panel of researchers about DCIS. The panel was convened to discuss DCIS and their recommendation was for better ways to determine if and when in situ will become invasive.

Of course, as they often do, the writer didn't lead with this information, but instead began with the group recommending removing the word carcinoma since, technically speaking, DCIS is precancerous. And, said the researchers, the word is too SCARY.

I guess my 23-year history with breast cancer has skewed my perspective a little but I thought our goal with breast cancer was to keep women acutely aware that cancer can kill you. Perhaps it's all those funerals I have attended that have brought me to the conclusion that we need to err on the side of caution when it comes to anything remotely connected to breast cancer.

But, as often happens, the detail that says it all was in the last line of this news piece.

"More than 400,000 women in the world die from breast cancer each year."

Maybe they should start each piece about breast cancer with that statistic, unless they think it's too scary.

• Fertility takes center stage at SABCS
• Score one for the Army of Women
• Navigating through the complex web of clinical trials
• A sound and light show
• A biomarker for chemoprevention

Young, in love, and diagnosed

BY KATHY LATOUR | JUNE 8, 2009

I had one of those lunches yesterday. You know the ones I mean if you make yourself available to the newly diagnosed like I have for the past 23 years. Not that any of these meetings are easy, but this one was particularly hard because it was with a former student of mine from Southern Methodist University.

The last time I saw her we were in Washington, D.C. at the first inaugural of George W. Bush. She was part of a group of students that I was overseeing as they took it all in – the parties, the politics, the fact that the country was being run by 20somethings. She graduated in 2002 and I had lost touch – like I have with many of my former students until they look me up for advice, a job tip, or just to say hello.

This reunion was different. She has just been diagnosed with breast cancer – at age 29. Over the years, I've heard from many of my former students when mothers or grandmothers were diagnosed, but this is the first time it was a former student. How can this be? She is too young, just as I was when I was 37 and facing my diagnosis. And what do I say? Luckily, she has gotten really good medicine so far – a gynecologist paid close attention to her when she said her father's sister had been diagnosed with breast cancer at 48. The same gynecologist didn't try to placate her when a lump appeared in her breast in April – two months after she married her honey of five years. I applaud this doc who didn't say, "You are too young to get breast cancer." Instead she said, "get thee to a breast surgeon," giving her the name of one of the top guys in the city.

He felt certain it was a benign condition called a fibroid adenoma, but said he would feel better taking it out. So he did. And surprise – cancer.

She has since learned that she has the BRCA 2 gene – probably from her dad, although the rest of the family has yet to be tested.

She is handling it as well as can be expected, but it really was hard to hear her talk about her wedding and plans for babies.

"I finally was able to look at the wedding pictures last week," she told me. "I looked at that girl in the picture and had a hard time remembering her and how she felt about life."

I hate this disease.

• Fertility takes center stage at SABCS
• Score one for the Army of Women
• Navigating through the complex web of clinical trials
• A sound and light show
• A biomarker for chemoprevention