Faith and cancer

BY KATHY LATOUR | MARCH 18, 2010

Why is it so hard to talk about spirituality and cancer?

I originally began the story on cancer and spirituality /faith that appears in the spring issue ("Keeping the Faith") for the Healing Well department of the winter 2009 issue.

As I got into the story, I found there was no way to even address the question in fewer than 1200 words, and then everywhere I turned there were more nuances and approaches that I wanted to address. Finally, it was moved to a feature spot in the spring issue to have more room to explore what had become a long list of topics: How should I address faith and cancer when there are so many religions around the world, some of which ascribe to suffering as part of our earthly journey?

How do I respect those who use "God" in every sentence when it offends some people as not being intellectual? How do I bring in the fact that there is science about those who belong to a faith community and how much it helps people in so many ways – and the discrepancy our survey showed about those who believed in a higher power but did not get support from their faith community.

And what about spirituality, which was my original focus of the story before I found out that there is no real way to define it. I thought I would finally have a definition when I interviewed Ryan Campbell, the hospital chaplain who speaks on the video slide show, "Chaplains Speak About Spirit" and in the Speaking Out department. I asked Ryan to define spirituality for me. He laughed and said, "No way." Even he wasn't going to try and define it.

Our beliefs are ours and, while there are studies about aspects of what we believe and how it affects us, my hope is that in your life you have found help with your cancer through faith, spirituality, or some other belief in "things unseen." I know I have.

Infections. . . newest strains are scary

BY KATHY LATOUR | MARCH 8, 2010

In the fall of 2008 I left the hospital after what I planned as my last-ever breast surgery. The year before, I had been diagnosed with DCIS in my left breast, which was treated with a mastectomy. I had had a mastectomy on m right breast in 1986 as part of my journey with stage 2B breast cancer.

After the 2007 mastectomy for DCIS, I had immediate reconstruction with the back flap and an expander inserted. My trip back to the OR in fall 2008 was to replace the expander with the newest model of implant. The trickier surgery was a redo of my then 21-year-old reconstruction on the right side. My surgeon planned to take out the old implant and replace it with the same one used in the left side to fill in a divot on my chest.

All was well for a week, then, the day I went in to get the drains out, I began to feel really bad. To make a long story short, I had a staph infection in the right breast. In fact, the surgeon took one look at what was in the drain and sent me to the infectious disease specialist one floor down. What followed was a picc line, my own I.V. pole, and oral antibiotics for three months. It was horrible. And worse than the fatigue and feeling terrible in general, was the depression that accompanied my body dumping all my serotonin in reaction to an infection.

When I learned my infection was methicillin-resistant Staphylococcus aureus, also known as MRSA, I was really upset. But I soon learned that there were a number of drugs to treat MRSA, and we would become good friends.

What has become an ongoing battle for me even today seems not quite as bad when I read about the newest strains of hospital-associated infections in a recent article in The New York Times, some of which have no drugs available and are killing people right and left. These global nasties, which are spreading in a number of ways, are a testament to the resilience and morphing ability of these bacteria. The newest infections, called Gram-negative organisms, can cause severe pneumonia and infections of the urinary tract bloodstream and other parts of the body.

The scary part of this is that as more and more resistant strains are popping up, fewer and fewer antibiotics are being developed--in part because they are costly to develop for such tricky organisms and then there isn't much payback when the patient only takes them for a few weeks. The challenge is that advocacy groups argue that more antibiotics will only result in more resistant strains that are harder to kill, and the real job is to keep patients from getting infections while they are in the hospital. It's a scary problem.

Radiation risks explored by Congress

BY KATHY LATOUR | FEBRUARY 27, 2010

I am spending a few days in Washington,D.C., with Suzanne Lindley, the founder of YES, who is here to testify before the subcommittee on health. Since a series documenting radiation treatment errors in The New York Times earlier this year, there has been an ever increasing call for federal oversight into issues of accreditation and training for those who dispense radiation therapy. Suzanne, a 12-year survivor of metastatic colon cancer, is here with the Medical Imaging and Technology Alliance to advocate for the benefits of radiation, which has added to her life.

Diagnosed with stage 4 colon cancer in 1998 and told to go home and wrap up her life, 31-year-old Suzanne decided to try the new drugs emerging before giving up. In 2004 she was close to death and out of options when a friend told her about Selective Internal Radiation Therapy, where small beads of radiation are sent to the tumors directly. Within six months of receiving the treatment, she had a 65 percent reduction in her tumors.

Suzanne is an amazing advocate. She founded YES for any patient with cancer in their liver to provide information and support, and for someone who used to hide from college classes that required she speak in front of the class, she can now keep an audience spellbound.

She reminds me of one of the gifts of hanging out with cancer survivors. You get to see what courage, hope, and faith really look like. You'll be reading more about Suzanne in the summer issue of CURE.

Aspirin and breast cancer recurrence

BY KATHY LATOUR | FEBRUARY 16, 2010

Can it really be that aspirin can reduce the risk of breast cancer spreading to another organ and cut the death rate by half? According to a study out today in the Journal of Clinical Oncology online, it's true.

The results come from the Nurse's Health Study. This is the ongoing observational study of more than 200,000 nurses who signed on to be followed back in the mid '70s. The study has revealed lots of great info about a number of diseases, among them breast cancer.

Some 4,000 of the nurses in the study were diagnosed with stage 1, 2, or 3 breast cancer between 1976 and 2002. The study looked at their use of aspirin after treatment ended and compared it to frequency of metastatic disease and death from breast cancer. What they found is amazing. Women who took aspirin six or seven days a week had a 43 percent reduced risk of metastasis and a 64 percent lower risk of breast cancer death. Note here: If you are in treatment for breast cancer, the study emphasizes that you not take aspirin because of potential interactions that can increase side effects.

While researchers don't know exactly why aspirin has the effect it does, they suspect it reduces inflammation, which is linked to cancer development. The researchers also did not collect data on the dose, but surmised that women who take aspirin regularly are doing so for heart disease prevention. The dose recommended for that is 81 mg a day.

The lead investigator in the study, Michelle Holmes, MD, DrPH, is hoping other trials will confirm the findings, which will means aspirin will become a low-cost, effective tool against breast cancer. Who would have ever thought it?

By the way, researchers found that women who took non-aspirin, non-steroidal inflammatory drugs (NSAIDs) six or seven days a week, also had a reduced risk of breast cancer death around 48 percent, but women who took NSAIDS less frequently and those who used acetaminophen did not experience such benefit.

So, add an aspirin a day to your list.

Cancer Survivorship

BY KATHY LATOUR | FEBRUARY 8, 2010

I love it when I stumble on a great resource for cancer patients and survivors. The newest find is the Voices of Survivors Foundation, begun by prostate survivor Lynn Lane.

Lane, a documentary filmmaker was diagnosed in 2008 and, after recovering, couldn't find the resources he wanted on the web – a place where survivors talk about what they have gone through. In Lynn's words, it was the power of the spoken word he wanted. The result is a great website where survivors can hear Lane interview other survivors or read survivors stories in their own words. Every situation seems to be addressed. Lane lives in Houston, and those of you in the area should know they are planning a live meet up soon. Let me know how it turns out and if this has been a helpful site for you.

Radon causes lung cancer

BY KATHY LATOUR | JANUARY 25, 2010

This sentence just caught my attention: Radon caused more deaths in the United States last year than drunken driving, fires, and carbon monoxide combined. Wow!

Radon is a naturally occurring gas released into the environment from the normal decay of uranium in rocks and soil. When it gets to be a health risk is when it is released into a home where it is breathed in by people. Then it becomes the second cause of lung cancer in this country. In fact, the World Health Organization report in September 2009 estimated that the number of deaths due to radon-induced lung cancer ranges from 15,400 to 21,800 at year.

If you don't believe me, go to Cancer Survivors Against Radon and read for yourself the stories of those who have been affected by Radon. Then go to the EPA zone map to see how great the Radon risk is for your neck of the woods.

Testing for Radon is as simple as buying an inexpensive kit and mailing it in. Go to a local hardware store or go online and you can have one mailed to you. According to the government, indoor radon levels are affected by the soil composition under and around the house and the ease with which radon enters the house. So, if your neighbor tested his house and it was negative, it doesn't mean yours is. In addition, precipitation, barometric pressure, and other influences can cause radon levels to vary, which is why both short and long term tests are available.

If you have radon levels at or above 4 picocuries per liter (about 1 in 15 US homes), you need to take action. Your state EPA office can give you costs and options, which, no matter the cost, is cheaper than cancer. January is National Radon Action Month. Do this for yourself and your family to prevent the possibility of lung cancer.

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.

Treatments for metastatic breast cancer

BY KATHY LATOUR | DECEMBER 13, 2009

The data presented on options for treatment for advanced breast cancer is still less than data for primary breast cancer, but it seemed like many of the researchers were reporting on new findings for combination drug options for metstatic breast cancer at SABCS this year. With the options seemingly increasing weekly, I could hardly follow what was the most effective protocol for any given metastatic situation, further complicated by the woman's hormonal status, Her2 status and other determining factors.

It seems many of the oncologists present were having the same problem I was. I went to a dinner on one evening where the topic was "Critical Concepts in the Use of Novel Cytotoxics for the Treatment of Patients with Breast Cancer."

This dinner, which was attended by a standing room only crowd of around 400, hosted three top oncologists who presented case studies on nameless women they had treated. They each began by offering the woman's basic pathology and her initial treatment before giving details of the woman's recurrent disease. Then they offered four or five options for treating the woman and asked the audience to choose which option each would use by punching buttons on a hand held survey device. They then put the audience choices on the slide in a bar graph, showing what percentage of those present had voted for which treatment choice.

The great news is that there are many options now for women with metastatic breast cancer, including endocrine therapies, traditional chemotherapeutic agents, new targeted therapies, and combination cocktails that combine two or more of the above. The options offered the audience were all reasonable and every choice of treatment was chosen by at least a few of those in the room (although there was no way to determine what percentage were bogus votes by those who were not clinical professionals who were guessing).

Each oncologist then offered a teaching moment on what he or she considered the besgt choice of treatment, before asking the audience to vote again.

Well, as one of the oncologists pointed out, more than a few of those present weren't convinced by their teaching moments. Each of the options still got a percentage of support, with 40 percent being the highest percentage offered in one discussion. This meant that the other 60 divided their votes between the remining four choices,

Does this mean that some of those answering were stupid, no. It means the options are many and oncologists will make a personal studied decision about which to suggest.

I sat next to Claudia, an advocate from New Jersey, at dinner, and she was listening as closely as I was because she is metastatic, with mets in her peritoneal cavity and two nodes in her neck. She was diagnosed originally at 31 and made it 9 years before the mets popped up in 2007. Claudia, one of the approximately 165,000 women living with metastatic cancer in the US today, has just learned that her current regimen "is failing her," as she put it, and she is looking for the next option.

I asked Claudia if she was surprised that there was such a wide choice of answers . Not at all, she said. There are lots of things to consider. What it did point out, she said, was that women with metastatic breast cancer need to be well educated on the options themselves and be able to ask questions about not only what treatment they would use, but what the impact might be on a clinical trial or the use of another drug in the future.

I asked Claudia if listening to the options had helped her find her next option. She said it had. I wish her the best.

Advocates everywhere at SABCS

BY KATHY LATOUR | DECEMBER 12, 2009

I am always sad to leave SABCS because it's been a time to reconnect with the amazing men and women who work full time, mostly as volunteers, advocating for breast cancer and the women and men who are diagnosed with the disease.

Advocacy is one of those words that can be scary if you don't know what it means because it sounds like something that requires a PhD, but advocates come with all levels of education. What they have that others don't is amazing passion to help after having been through it themselves, or to honor someone they love.

Passion is an amazing thing to watch. It's what prompted Nancy Brinker to create Susan G. Komen for the Cure to honor her sister, Susan Komen, who died of breast cancer. Now Komen is the largest funder of breast cancer research outside the government. It's what prompted the creation of Breast Cancer Action, the Young Survival Coalition, and literally hundreds of other groups locally and nationally.

Every advocate and advocacy organization has its own focus, and, believe me, with breast cancer, there will never be enough advocates to cover every aspect of this disease. For example, this week I have highlighted seven of the 186 advocates in San Antonio this year, each of whom works to bring attention to a different area of breast cancer whether it be policy change, male breast cancer, inflammatory breast cancer, young women with breast cancer, African American women with breast cancer, women with metastatic breast cancer, and many more. Indeed, many of the advocates work in multiple areas because once they tackle one issue, they find that there are 10 more underlying issues that need attention.

There are also those who advocate with whimsy, the approach of Rene Bowditch and Mary Beth Gibson who are co-founders of Beyond Boobs!. The women met at a retreat for survivors in 2006 where Rene was dressed as her alter ego, the Good Health Fairy, the persona she has brought to SABCS and one that gets a lot of attention. The two formed a support group that became a nonprofit whose mission is to educate all women about breast health while offering support for young women who are diagnosed.

Being in the passion of the advocates here is what keeps me coming back year after year to this event, because as tired as I am by the end of the day, when I go to the Alamo Breast Cancer Foundation Hot Topics session every evening, I am renewed by the room full of women and men who have come to learn more so they can go home and advocate for others. Last night I met a young man named Peter, one of 52 men (so far) with breast cancer who lived at Camp Lejeune North Carolina between 1957 and 1985. Peter stands out in this mostly female group and the women have clearly come to adore him. Peter is battling metastatic breast cancer and has been a national advocate for the other men and women stationed at the Marine Corps Base at Camp Lejeune, North Carolina, who were exposed to contaminated drinking water from 1957 until 1987.

Peter sits with the other advocates as they listen to a panel of doctors who clarify, and simplify, the day's lectures to hit on the high points (this is also a favorite spot for those who are not medically trained to come and get some effective translation of medical to real life).

On Sunday the advocates will head to their homes to take what they have learned to their own communities -- and to be there for the next wave of advocates who will hear the words you have breast cancer this year.

Prophylactic mastectomy on other breast increasing

BY KATHY LATOUR | DECEMBER 11, 2009

It wasn't surprising to me today to hear data that showed a large increase in women choosing prophylactic mastectomy on the side not affected by breast cancer. You can read the details of the study in a brief from Laura Biel in Day 3 coverage of the symposium, but in a nutshell it showed that a woman diagnosed with breast cancer is more likely to undergo prophylactic mastectomy if she has an MRI and biopsy of the healthy breast during treatment. The 3,000 women were studied between 1997 and 2005, while researchers were trying to explain why mastectomy rates are increasing. I wish I could sit down and talk to these researchers, because I think I understand exactly why women want the other breast removed – fear. And, while there weren't details on why they used MRI in the presentation, MRI is not the first line diagnostic tool.

This tells me the medical professionals were not able to determine the status of the second breast, a scary piece of information for women. I agree that women with DCIS may be overreacting to choose to remove both breasts, but, you know what, after being diagnosed in 1986 with stage 2b breast cancer at age 37, I begged them to take off both breasts. I had a 1-year old and I wanted to be around to raise her. Back then they wouldn't consider it, but I wished I had fought them when, in 2007, I got DCIS in my other breast and underwent a second mastectomy.

This kind of story is out there more than anyone knows and women talk. In addition, with breast cancer being publicized the way it is, it's very much seen as a killer. When you have one breast that betrays you, it makes sense that you want the other one gone, and the younger you are the more motivated you are.

The women I've talked to who demanded prophylactic mastectomy were not going to be deterred, but most of these women had advanced diagnoses.

I think that removing both breasts remains a decision to be made by a woman, her loved ones and her doctors.