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.

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.

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.

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.