Breast cancer patients can reduce their risk of recurrence

BY KATHY LATOUR | NOVEMBER 16, 2009

A few blogs ago I told you about my discussion with Otis Brawley, MD, the chief medical officer of ACS and his message that we have to use what we know to prevent cancer and be well, and it comes down to applying what we know about healthy living , meaning diet, nutrition, stress management, exercise, and the kind of psychological support we get from loving and supportive relationships.

I just heard the same message from Dean Ornish, MD, who has been promoting healthy lifestyle as a way to cure heart disease for more than two decades. Ornish was speaking at the annual meeting of the Society for Integrative Oncology in New York City. This meeting brought researchers from 19 countries with 25 different degrees to New York City to discuss the power of complementary healing modalities for cancer. Ornish's research is just as compelling now and he has offered a number of studies about the power of lifestyle change and its impact on cancer. Repeatedly, the researchers here have offered studies, well designed scientific research, on the power of the patient in being a part of his or her own cure.

This is a hard thing to write about without it sounding like there is some kind of blame being placed for getting cancer or for not being able to impact your own ability to impact cure, but in no way should you read it that way. Instead look at the research the same way you would if you were considering a drug to help you get better.

For example, I was excited to hear David Servan-Schreiber, MD, PhD, talk about the research of Barbara Anderson, PhD, at the University of Ohio, which you will read in the cover story of the Winter Issue of CURE. Anderson has followed a large contingent of breast cancer patients for more than six years. Half of them were followed with no intervention and the other half were enrolled in stress reduction program that had a number of components to it, such as relaxation, meditation, problem solving, finding community support, and exercise.

What she found was a 68 percent reduction in recurrence in the group doing the stress reduction. Servan-Schreiber, the survivor of a recurrent brain tumor and author of Anticancer, brought up Anderson's research, saying that if there was a drug that offered this kind of response and it was not given to patients, the doctor would be sued. I agree. So why are women not being told about these findings much less being offered the same support. I asked Barbara Anderson this question while talking to her about the research. She said she didn't have any idea.

So spread the word, ask your oncologist about Anderson's research. It was reported in 2008 in the journal Cancer. Get the article; send it to every one you know.

Getting support at Gilda's Club by just showing up

BY KATHY LATOUR | NOVEMBER 9, 2009

Last week I met with 30 cancer survivors at Gilda's Club North Texas to talk about survivorship, the time after treatment ends when we have to find our life again. We spend lots of time and energy on getting through cancer treatment, but little on the issues and concerns that linger when treatment ends. CURE published a great supplement called Surviving Well this spring to help survivors understand the physical and emotional issues related to survivorship.

At Gilda's Club, a cancer support community named for the actress Gilda Radner, those who came to talk about survivorship represented a wide range: men and women, old and young, those who were considered cured and those who were in stable remission. They represented a vast array of cancers: breast, lung, lymphoma, colon, brain. Some brought family, some came alone.

Despite their differences, their concerns were often similar. They are the same issues we hear from readers: fatigue, pain, survivor guilt, fear of recurrence, the feeling that they no longer inhabit their life. We only had an hour and a half so there wasn't time for in-depth discussion of everyone's issue, and I asked them to each give me one reason they had come. As we went around the room they talked about how cancer had come into their lives and how they had endured treatment -- for some repeatedly -- and what they wanted from that night.

In offering their questions or concerns came a magic moment of awareness that I often see at gatherings such as these. As they talked about fatigue or the sense of being out of line with their life, others who felt the same way nodded in agreement. It was the affirmation we all need that we may have diverted from the old life we had, but that the new life as a cancer survivor has commonalities that can be recognized if not embraced. In listening to others, your view of your situation often shifts just enough to feel the presence of the support that will get you through.

After the official meeting time ended, I chatted with a few of the attendees and noticed that others had formed small groups of two or three around the room where, brought together by the similarities of their feelings, they found community.

Do you understand your diagnosis?

BY KATHY LATOUR | NOVEMBER 3, 2009

In the upcoming Winter issue of CURE we have a story on health literacy. As most of you who have been there know, this phrase does not relate to how many people who are diagnosed with cancer can read and write. The day I was diagnosed it didn't matter that I had a master's in communication because I heard very little after the words you have cancer. For the piece we interviewed Helen Osborne, M.Ed.OTR/L (which means she is also licensed in occupational therapy). Osborne, the founder and president of Health Literacy Consulting, became interested in health literacy in the mid-'90s and has received awards for her "plain English" writing.

She is also the one who determined that health literacy should have its own month and decided it should be October. Osborne consults with lots of folks about how to educate people on health issues, including cancer. In addition to promoting the use of plain language, Osborne speaks on the barriers to understanding health care information. These barriers include the obvious things, such as the inability to read or write or a disability such as dementia. But she also addresses another barrier that we don't consider that often – the emotional impact of information. This points to one of the most ignored aspects of health literacy--emotions and how we often cannot hear when we are trying to figure out the issues of life and death--no matter how much education we have.

Over the years she has written a number of cancer education items for the National Cancer Institute, among them Surgical Options for Early Stage Breast Cancer. She laughs about how, a year later, when she was diagnosed with early-stage breast cancer, she had no clue what to do. "I literally wrote the book but it made no difference," Osborne says.

That was how I felt the day I heard I had breast cancer. I could paint you a picture of what the room looked like, but I don't remember any of the words. At one point a few years ago, my oncologist and I were asked to do a skit for a meeting of oncology fellows where he read my actual pathology report into a microphone while I listened. When he said something that set off an emotional or mental reaction in me, I would start saying out loud what I was thinking. Of course, he is still telling me important information, but I'm not hearing it because my own internal dialogue is going. The oncology fellows got it in a way that no amount of classroom instruction could – and I have heard from more than one of them that they now know their patients need information repeated before they actually hear it.

This brings up another issue about literacy. Osborne says the only way to guarantee that cancer patients get the information they need is to get to know them and how they communicate. She gave as an example a time when her own oncologist was discussing with her the use of hormonal agents. Osborne concedes that she does not "do" numbers despite being surrounded by a husband and children who are all numbers driven, so when her oncologist started giving statistics on relative risk and absolute risk, Osborne zoned out. "Then she did something so simple. She took her right arm and held it really high and said, 'I see this as your benefit,' "Osborne says. "Then she took her other hand and held it low and said, 'this is possibility of side effects.'" She made it clear and simple to Osborne, who decided to do the drug that she had had misgivings about.

Osborne recalls the reaction of her hospital co-workers when she began talking about health literacy in the mid-'90s, asking if she meant the ability to read. Today, it's an issue on the national agenda. To read and hear stories about the importance of health literacy, go to Osborne's website

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.

Pink ribbons and cause marketing -- be informed

BY KATHY LATOUR | OCTOBER 20, 2009

It's the month of pink everything and as a breast cancer survivor, I am the first to say I love it – and I hate it.

I love the fact that there is now no way to avoid breast cancer information. While you may think every woman out there knows the facts, I have had two women this month who have told me they aren't at risk for breast cancer because it's not in their family.

How they have missed the fact that genetics is a very small part of the cause of breast cancer, I'll never know. This points to the need for continued information. On the other hand, I hate the fact that the pink ribbon is everywhere because in some ways it diminishes the reality while commercializing a terrible disease. Maybe women have become immune to the messages because there are so many.

As a 23-year survivor I have watched the evolution of the entire pink ribbon movement. When I was diagnosed there were no pink ribbons and no one talked about breast cancer. One elderly woman came up to me at church and whispered in my ear, "I had the operation too." I turned and said, "You had a mastectomy?" She almost ran the other way.

I was not ashamed of having had breast cancer, I was angry. And, like many women who came of age during the women's movement, I wasn't about to sit home and hide. I wanted action. I wanted a cure. And then my mother was diagnosed, and I realized my daughter may have inherited more from me than just blue eyes. Then I got angry. Not my daughter, I screamed at the universe.

I've heard more than one person attribute the success of the breast cancer movement to the women like myself who were diagnosed in the 1980s. We had just come through a period in history when we were learning how to make ourselves heard about a number of social issues. So when breast cancer showed up, we applied what we had learned to breast cancer. This included marketing professionals who understood that a product attached to a cause will get attention for the product as well as the cause.

And now we know that, when given a choice between two similar products, people will buy the one connected to a cause --- and Ta Da, a pink empire was born. What we have now are pink everything, many of which bring a promise of all or some of the purchase price going to breast cancer in some way. In many cases, these products and events do result in significant money going to the places we need them for early detection to save lives and research to look for a cure.

But with the pink ribbons comes a responsibility on the part of those who are pulled in by these promises. Check them out. Know where your money is going, and be sure it's what you think it is.

When someone says a percentage of profits goes to breast cancer research, find out what percentage, find out if it's capped at a certain amount, and find out exactly who will get the funds. Is the donation based on gross or net profit, which is a huge difference.

Read the fine print to determine if there are other things you have to do once the product is purchased for funds to be sent. Was it a come-on or was it legit? Do your research.

For example, I heard about a winery called Cleavage Creek that purported to donate funds to breast cancer. Checking it out online, I found that the owner had lost his wife to breast cancer and that breast cancer survivors are featured on the bottles – and he has donated funds toward helping create the Integrated Oncology Research Clinic at Bastyr University.

Now, instead of assuming he was telling the truth, I went to the web page for the university where it was confirmed. And I liked the fact that the clinic would be working in conjunction with the Hutch in Seattle to do clinical trials on complementary therapies.

It doesn't take much energy to check out where these pink-focused funds go to in these days with the Internet.

The same can be said for any nonprofit you are considering for a donation. There are a number of watch-dog organizations that evaluate nonprofits, such as www.charitynavigator.com.

Now, in light of the apparent connection between alcohol and breast cancer, you may find you don't want to buy wine for the cause. Then don't. There are lots of other ways to contribute. Just do your homework first.

Why I joined a lymphedema clinical trial

BY KATHY LATOUR | OCTOBER 16, 2009

I joined a clinical trial this week, but it has nothing to do with a drug or treatment. It's to see whether aquatic (water) exercise will have any effect on my lymphedema, the swelling of my right arm that resulted in an infection I had four years after my first mastectomy in 1986.

Lymphedema remains one of the most difficult late effects of breast cancer because it can show up for no apparent reason, there is no cure, and managing it can be difficult.

My lymphedema occurred as the result of an infection in my arm that was caused by a hang nail. That's right, a hang nail. When I felt the familiar pain in the middle finger of my right hand, it was 1990, four years after my mastectomy. My surgeon had mentioned that I needed to care for my arm after surgery, but, like many women diagnosed with breast cancer, my thoughts were on other issues at the time –such as dying.

So, when, four years after surgery, I had a hang nail, I didn't give it a thought. I ran it under hot water, which was the only thing I had ever done to kill what had always been a mild infection. This time it was different. As my hand and then my arm started to feel strained that day, I never connected it to my surgery or the possibility of lymphedema. But the next morning when my arm was hot, swollen and red, I knew I was in trouble. I called my surgeon, who immediately put me on the nuke of antibiotics and told me to see her first thing the next morning, which was Monday.

By the time we reached her office, the red from the arm had traveled onto the chest wall, and she took one look at it and marched me off to the hospital where I stayed for five days on IV antibiotics.

The result: my right arm is larger than my left, and I had two more infections in the next year. Luckily since then, it's only been the swelling that has been a problem.

Over the years, I have undergone manual lymph drainage, wrapping, and I do self massage when I think about it. Alas, I refuse to wear the sleeve due to the fact that it cuts me, and in Texas in the summer, well, let's just say that I detest it. And after a story we did in CURE questioning the effectiveness of the sleeve, I was eager to give it up. I bought a sequential pump that made no difference, and then reverted to the only thing that seemed to work for me to keep the arm at its smallest, which was swimming.

So, when I heard about this clinical trial being conducted by a local breast surgeon, I signed up. In the trial, he is looking at 50 women with "lymphedema secondary to breast cancer."

We all agree to take part in 12 Water Works aquatic exercise classes at the Tom Landry Wellness and Health Center, a beautiful facility close to the hospital where I was treated that has a heated exercise pool and a staff of young, energetic professionals. And there is no charge for the classes that are held in 89 degree water in the shallow pool. The classes are an hour each and include low-impact movements for warm up, stretching, breathing, and upper- and lower-body resistance training. Before the first class, both my arms were measured and I filled out a questionnaire about overall health and wellness. At the end of six classes, I will be measured again, and then again at the end of 12 classes.

Then they will keep me informed about findings for the next five years.

I am hoping it shows some success. I have read research on lymphedema over the years and I know many women suffer with it in ways I don't – not being able to wear sleeves, the heaviness and pain of the arm, constant infections, and the obvious embarrassment of having a large arm.

There are other clinical trials looking at issues related to having had cancer. I want to encourage you to research the trials near your home and take part.

Go to http://clinicaltrials.gov and type in search words for your type of cancer and survivorship and look at your options.

Free mammogram -- read on

BY KATHY LATOUR | OCTOBER 7, 2009

It's breast cancer awareness month again, and this week there were two events I attended that reminded me once again how much I hate this disease.

Since it's been 23 years since my bad diagnosis of breast cancer (I had DCIS in 2007 in the other breast), I forget the pain sometimes.

I forget the bald head and the fear and the anger. Then I am blessed with an event in October that reminds me. I say blessed because, as hard as it was to go through breast cancer, I never want to forget what it did to my life and how very much I don't want other women to have to go through it.

That's one reason why I was appalled at one statistic I heard yesterday at the Faces of Breast Cancer event put on by Astra Zeneca here in Dallas. As part of the event there were presentations from the executive director of Susan G. Komen for the Cure Dallas affiliate and Gilda's Club, both of which do remarkable work in our community.

Chris Packard, the executive director of the Komen affiliate in Dallas, told the assembled group that Texas is number 42 out of 50 states in the ranking of the number of women who should get screening mammograms at age 40 and don't.

I was appalled. That means there are only 8 states worse than Texas. How could my Texas sisters be so stupid.

Then I realized that part of the reason has to be that Texas has the largest uninsured population in the country, which is another horrible statistic about the Lone Star State.

Breast cancer can be deadly if left undetected and is very survivable if found early. And a mammogram costs $110 at most reliable places – less when it's subsidized. So let's do something about that. No matter where you are in the country when you read this – but particularly if you are in Texas – send an e-mail to your whole list of friends and remind them that it's breast cancer awareness month, and that if they are over 40 and haven't had a mammogram they may be harboring a very survivable cancer.

In fact, I challenge you to go a step further. If you know a woman who has no insurance, pay for her mammogram.

That's what I am going to do. I will pay for a mammogram for the first uninsured Texas woman over 40 who has not had a mammogram who sends me an e-mail at kathyl@curetoday.com.

If you want to pledge to help a Texas woman get a mammogram, let me know and I'll send you number 2, 3, 4 . . .

We are our sister's keepers.

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.

Needles, giving blood and cancer flashbacks

BY KATHY LATOUR | SEPTEMBER 22, 2009

I had to have blood drawn for a test last week and it was a nightmare. I didn't have great veins before chemotherapy, and now they are impossible because of scarring. I also have to worry about lymphedema in the left arm since my second diagnosis of breast cancer in the fall of 2007. Even though I had a sentinel node biopsy, which only removed one node, I am still at risk of getting lymphedema.

I never thought about my veins before cancer, making that just another of cancer's gifts that keeps on giving. But after having a few inept technicians try to find a vein in the years after chemotherapy, I have a very clear boundary about my left arm and the veins that live there.

No 1. Know what you are doing when you come at me with a needle. No. 2. Don't fish in my arm. If you don't hit the vein, get out.

I know this about myself, so when I had to be stuck for a test last week, I told the person making the appointment that I needed a pro. And she was. I went to my happy place through self hypnosis as she prepared the arm with the patting and slapping that precedes the stick. The stick was painless, but then the vein dried up, as scarred veins sometimes do, and she tried to get it going again with a little tug.

Well, that did it. There is something about that particular pain that takes me back to chemotherapy in an instant. It's one of those body memories, like the smells of the chemo suite that can STILL make me nauseous after 23 years. I have no control over it no matter how hard I try. We were done.

She immediately pulled the needle out and was very apologetic. I tried to explain that it wasn't her, it was my body reminding me that there are feelings that cannot be explained that are held in our cells and that re-emerge no matter what we do.

She called in the top person at the lab who asked if she could look for another vein. The fact that she asked impressed me. I said it was OK but we would discuss the next option. I knew she wouldn't find one because I was shivering by then, another body reaction when I get stuck and upset. And cold is the last thing you need when giving blood because the veins seem to head to deeper tissue when you are cold.

She agreed that there was no vein and said she would look at the test to see if we had enough. By then I had regained some control and left.

As I sat in my car before heading back to work, I thought about the past 23 years and how many ways cancer has impacted and continues to impact my life--and the body's ability to store such strong responses to something so insignificant.

Healing through art

BY KATHY LATOUR | SEPTEMBER 14, 2009

Art can do amazing things to help us understand ourselves and the world around us, including healing from cancer.

I met with an old friend and fellow breast cancer survivor and a group of her artist friends last week to talk about using art to help women heal from cancer. Diane Hosey, who I had interviewed in the early '90s for my book The Breast Cancer Companion, was diagnosed in 1987 at 31 with stage 3 inflammatory breast cancer, a year after I was diagnosed.

In 2007 she decided to celebrate being alive by diving again into the abyss of breast cancer to more fully understand what had happened to her. As a very artsy woman and business consultant, Diane asked an artist friend named Karen Blessen (who was the first graphic artist to win a Pulitzer Prize, by the way) to interpret her experience through art. Blessen, a journalist and graphic artist, was the perfect person for the job, having founded the nonprofit Today Marks the Beginning, whose mission is to use art to impact public awareness of social issues.

The resulting story and art created by Blessen appeared in the Dallas Morning News and was so powerful for Diane that she wants to explore how the same process might be used for other women who have survived cancer to gain new understanding of their experience as they heal. It was a dynamic discussion, with the six women gathered around the table bringing insight and excitement of their own remarkable lives to how such a project would work. How do you find the right match of survivor and artist? What would the resulting presentation look like? Is it a gallery show or performance art or both?

It's an exciting idea and I want to know what you think. Would you work with an artist to interpret your cancer to better understand what has happened to you? Would you revel in the possibility of finding new territory? What kind of presentation would you like to see whether you took part or not?

I am intrigued by the possibilities because in 1996 I created a piece of art that helped me understand the power of artistically interpreting my own experience. I had compared my feelings after breast cancer to being shattered and then having to put myself back together again--using that analogy when I spoke about one of the positives of cancer. Positive? Yes, because when you put yourself back together you can add things that weren't there before. I actually put a piece of pottery, by a well-known potter named Mary Whitkop, back together that broke the year after receiving it from a gallery in Taos, New Mexico. I reassembled the pot adding things as I went: the pink rhinestone ribbon, the crystals of an old necklace that belonged to my mother, beads chosen by my daughter to represent her, a symbol of Southern Methodist University where I was welcomed to teach while going through chemotherapy.

As I finished assembling the pot, I saw that one piece was still missing, probably because it was clearly the point where the pot had hit the floor and the pieces were too small to save.

How ironic that my pot would be missing a piece. I filled the hole with beads that I had collected over the years, making it the most beautiful part of the pot. Like me, the pot had lost part of its original symmetry, which had been replaced with something bright and beautiful.