For the Cure to a broken heart

BY KATHY LATOUR | FEBRUARY 3, 2012

First a recap. For the past four days we have been bombarded with information about the decision by Susan G. Komen for the Cure to remove funding from 18 Planned Parenthood sites, using the reasoning that they don't fund any organization under investigation. Well, within about 12hours it became clear that the decision came straight from the office of Karen Handel the new Komen Vice President of Policy and a former Georgia office holder and gubernatorial candidate who is anti-abortion and has even gone so far as to say she is anti-Planned Parenthood.

Now there is enough evidence to confirm that the decision to stop funding organizations under investigation was made in December specifically to stop funding Planned Parenthood, and again it was Handel that drove the decision. Komen has been down the Planned Parenthood path a number of times in the past decade and had made what everyone thought was a final decision–-it would be funded. But that was before someone recommended Karen Handel as the best person for the job of Vice President of Policy.

That person is known in the ranks of Komen as someone who mixes a particularly powerful batch of Kool-Aid that Nancy Brinker has become addicted to.

So where are we? Komen stands by its decision, but now Nancy Brinker goes on television to say it's a policy change to give money to direct service organizations, not pass through groups, which means they want to give the money to the groups that do the mammograms and Planned Parenthood evidently doesn't do that, they must send women out and then pay for it from Komen funds. So why the switch?

Personally, I think Nancy considered what their decision would mean for poor women in Dallas who go to Parkland Hospital, which, I am fairly sure gets Komen funds for its screening program and has been under investigation for two years – and found guilty, by the way, in areas that don't pertain to screening. And no one thought about this before? Komen is in a mess and this is where the broken hearts come in.

At the first headline, I blew it off. Komen has been a target before, a lot. They are big, they raise a lot of money, and the well over 100 affiliates raise money through the Race for the Cure, 75 percent of which is kept local for their own screening, education and treatment needs. This money reaches the very poorest of the poor and the women who work tirelessly for Komen affiliates make a real and tangible difference in the lives of these women. These are the salt of the earth of the American heartland where women are proud to take care of each other and dedicate thousands of hours a year to do just that.

Speaking around the country at Komen events, I have met hundreds of Komen volunteers and I would be proud to call any of them a friend. I have never asked anyone if she was a Democrat or Republican or if she was for or against abortion.

With the 25 percent the national foundation receives they fund numerous other projects including basic research, and as a 25-year and 7-year survivor, and a woman who lost her mother to breast cancer, I count on research to be sure my daughter doesn't have to face this disease, and if she does, she lives through it.

I have been president of the board of two nonprofits funded by Komen, one, the Bridge Network, provides direct support to women diagnosed with breast cancer who have no insurance. The other was Gilda's Club North Texas, now Cancer Support Community. These programs would have had a much harder time without Komen.

But what has really broken my heart this week is talking to the women who built the foundation, some of whom spent upwards of 20 years committed to this cause. The woman who created the policy office at Komen, a survivor herself, spent endless hours in the halls of Congress during her 10-year tenure, which ended in 2008. She worked both sides of the aisle to overcome any idea that Komen was politically driven. She also convinced the leaders of our country that this organization was about more than pink ribbons, it was about the power of the vote. She organized advocacy groups before we understood what advocacy was about. For 10 years she grew the office, only to watch the newest occupant, who has been with Komen nine months, bring it down in two days.

These were strong women who wouldn't take no for an answer, just the way Nancy Brinker wouldn't when she started the organization as a promise to her sister. There are some of the "old guard" left, women who took Komen to the heights in the nonprofit world to make it what it was on Monday of this week: An organization committed to ending breast cancer that was built on integrity and very decidedly non political – because breast cancer doesn't care what you believe, it is an equal opportunity killer. There is no place for politics at Komen.

There are many of us who fear that Komen will not be able to recover from this in part because of the way it has been handled. If I had been Karen Handel, I would have offered my resignation immediately, and I was hoping she would have the honor to do that. Then I saw the retweet she posted, "Just like pro-abortion group to turn cancer orgs decision into a political bomb to throw. Cry me a freaking river" and feared the worse. This woman has no grace, no courage and an ego that doesn't care if she brings down in nine months what it took others 30 years to build.

Resign Karen. You owe it to a lot of people.

1:27 p.m. Nancy Brinker has made a statement that includes the following

"We will continue to fund existing grants, including those of Planned Parenthood, and preserve their eligiblity to apply for future grants," Nancy G. Brinker, the agency's ambassador, said in a statement.

So Handel is still there and to shut down the firestorm, PP can apply. This does not mean they will be funded.

• An update on the Cancer Genome Atlas for breast cancer
• Video blog: Test could spare some DCIS patients from radiation
• Video blog: HER2-targeted agents
• Video blog: Complications with brachytherapy in breast cancer
• Video blog: CLEOPATRA and pertuzumab in breast cancer

Living with cancer

BY KATHY LATOUR | DECEMBER 20, 2011

Suzanne Lindley was diagnosed with metastatic colon cancer 13 years ago at age 31. Since then she has become an ardent advocate for others living with cancer. She also writes about her life for CURE on occasion. This is one of those occasions.

I wake up with cancer. I go to bed with cancer. It has been a daily happening for so many years, I no longer let it be the first, nor the last, thought of every day. It has robbed too much from too many that I know and love. Yet, there are friends that I have met because of it; heroes who have forever touched my life as cancer has shaped our days and changed our directions. The past few weeks have been interwoven with the tapestry of these friendships and the special people and circumstances that brought us together.

I was at a LiveSTRONG Summit when I had the privilege of seeing Jonny Imerman for the first time. I soon became an Imerman Angel and found my angel, Kevin, and his wife Jen. Kevin is also living with stage IV colon cancer. His nickname is "Boa," shortened from Rocky Balboa and perfectly fitting! He has a strong will, a big heart, and embodies the meaning of LiveSTRONG!.

We have been fortunate to meet in person several times....for the first time two years ago after a Dallas Cowboy gadme and most recently just months ago when he spent a few days with our family. In between, we have marched the Halls of Congress, written hope in Dallas, DC, Washington, and on top of Ol' Baldy, seen the beautiful falls in Spokane, and even climbed a small mountain!

During the past two weeks, Kevin's struggle has been difficult. He and his family have weighed heavily on my mind. Kev has been in the hospital and at one point was not expected to survive. Jen hasn't left his side. A few days after this dire prediction I was happily reminded that there is no crystal ball as his voice greeted me on the phone. He assured me that he was a long way from giving up and that he would be spending Christmas with Jen and his girls. As he continues to recover, I marvel at his willpower. With Christmas just days away, I am now hopeful that he will not only be enjoying family - but celebrating in the comfort of his own home!

Other angels have graced my life this week, too. A few months ago I was dreaming that YES! would be able to procure a public service announcement and in my search for support, Eric answered one of my phone calls. His benevolence and dedication actually made our PSA possible and it has already changed lives! Thank you, Eric and CBS!!!

During our first conversation I learned Eric's dad is living with cancer. We shared both the obstacles and celebrations that cancer has put in our path. The pride and admiration he has for his parents was evident, and with every word I was inspired. Terry and I soon began talking on the phone, too.

On Wednesday, I had the chance to hug Eric's neck and thank him personally for making a dream come true. We talked about hopes, plans, and his dad. On Friday, I got to meet Terry, who since that first conversation a few months ago has survived two brain surgeries, an abscess, a stroke, and a cardiac arrest. His determination is enough to encourage anyone! I am amazed by his each and every milestone. I gave him a picture of hope when we met and as I left, he said, "Hope....that is what we all have, isn't it? That and each other."

His words have followed me the past few days, reminding me of how we help each other through the struggles, challenges, and fears. It is our patches of courage, tenacity, and strength that weave our lives together. As each day begins and ends, I am thankful for the blanket of hope....and friendship.

Love, Suzanne

• Two new drugs approved, one pulled from the pipeline
• Cancer screening rates low
• A call for more pancreatic cancer research
• An introduction to cancer: From a father and his daughter
• The cushion of silence

Cancer and Christmas

BY KATHY LATOUR | DECEMBER 14, 2011

I remember well my first Christmas after hearing the words "you have cancer." It's been 25 years, but there are certain things that stay with you. I was diagnosed in October when my daughter Kirtley was only 13 months old. I was in the middle of Chemo at Christmas, sick as a dog and, quite frankly, don't have very many memories of that Christmas except for the omnipresent fear every time I looked at my daughter that I may not live to raise her.

The traditions I had with my family and my new family of stepchildren went out the window as I tried valiantly to get up and down the stairs to bed. To say there was little Christmas spirit is putting it mildly.

The next Christmas was better and worse because it was the birth of the woman I dubbed the Crazy Christmas Mother. She moved in around October and collapsed around January 15, having produced the best and biggest Christmas anyone could remember. Some of you have met her too. She is born out of the fear that this may be the last Christmas, and she begins to run out of steam around year five of survivorship when it appears you might live -- or you can see that it's time to stop spending the family savings on Christmas.

It's an irrational way to live when you think that by buying everything your child wants, he or she will remember you if you die. Now that my daughter Kirtley is 26 I know that what she remembers is not what I gave her at Christmas, but what we did: going to east Texas to cut down the Christmas tree and bring it home; singing Christmas carols at the nursing home with all her friends from church; driving around to find the worst Christmas lights in the neighborhood (the criteria being how many different colored lights were used, whether they blended Christian and Secular ideas (i.e. Santa and Jesus), and just plain bad taste); and making Christmas cookies with her cousins on Christmas Eve. OK the blue suede boots were a hit but she was older.

So for those of you in treatment this Christmas or only a few years out of treatment, my best advice is to be easy on yourself. Let someone else host Christmas for a change. Buy out of catalogs if you have to shop.

Best of all, take a minute to really understand that in reflecting on all the people who have cared for you during this most awful time, you have truly experienced the love that this season represents.

• Two new drugs approved, one pulled from the pipeline
• Cancer screening rates low
• A call for more pancreatic cancer research
• An introduction to cancer: From a father and his daughter
• The cushion of silence

Understanding the new affordable health care act

BY KATHY LATOUR | NOVEMBER 30, 2011

A new poll from the Kaiser Family Foundation shows that the country is still confused by what the new Affordable Health Care Act does and does not offer.

According to the Kaiser poll, 6 in 10 Americans view favorably the provision that requires insurnce companies to provide easily read and easy-to-understand benefit summaries.

Take a minute to think about this. First, the fact that you have to put into law that insurance companies have to make clear what they are offering sure doesn't say much about the ethics of insurance companies. I know, I know, you all want to know what rock I have been living under.

What I read in this mandate is that most people don't have a clue what their insurance will or will not cover -- because the insurance company made it that way intentionally. How do these people sleep at night.

In the one woman show I do called One Mutant Cell, I joke about being denied coverage for a wig because I filed a claim for the wrong thing. Where, I ask you, would I have run into the information that in insurance language a wig is a "cranial prosthesis" -- and that is what I was supposed to file for. Then when I got the reimbursement, it was much less than I expected - of course. I called the insurance company and was given the formula they use to figure out what they will pay.

OK folks, math was never my strong suit, which is why I am a journalist. My trade is in words. But the forumula they gave me was so complicated it took me an hour to figure it out. The big kicker was one sentence that was something like this:"policy pays xxxx percentage of usual and customary costs."

Ok, so what are usual and customary costs for a wig. Well, come to find out that those numbers are on a document hidden in a vault somehere in insurance land. No kidding. They wouldn't give me the figure.

I learned a lot about insurance policies the year before I got cancer when I gave birth to a premature baby. I had never filled out an insurance claim until my daughter was born, and then I got to be an expert. What I learned was that my insurance policy was written in a way that I couldn't possibly know how much was not covered because I had not yet encountered the situation so didn't understand what I should ask.

This is where they get us -- they research what we will need and figure out how not to pay for it and sell us on all the pretty wrappings. It's like taking a bite of a beautifully decorated cake to find cardboard underneath.

When it came time to take my daughter home from the hospital I had to put the bill on a credit card -- $10,000 -- in 1985. It took years to pay off.

So that resulted in me learning how to read an insurance policy, and, since my husband was self employed, I went out and compared and found one that was $1,000 out of pocket and then they paid 100%. I signed us up -- then a month later I was diagnosed with breast cancer. Sorry.

I was well covered for my cancer, but when it came time to renew my policy the next year, the rates quadrupled. This was where they got you. I called and got the gobbleydgook about why before letting it lapse. I had taken a full time job and the insurance kicked in the day after the policy ended. I was very lucky. Today cancer patients face bankruptcy in numbersyou won't believe -- and this is when they have insurance. Check out the story in our winter issue on financial toxicity.

This brings me to a question. Is there a good insurance company out there that has made it easy to file and that has been supportive and clear about what they and do and do not cover.

Which one is it? Tell us please. We want to thank them.

• Two new drugs approved, one pulled from the pipeline
• Cancer screening rates low
• A call for more pancreatic cancer research
• An introduction to cancer: From a father and his daughter
• The cushion of silence

The Emperor of All Maladies: A Biography of Cancer

BY KATHY LATOUR | NOVEMBER 28, 2011

If you or anyone you love has had cancer, you must read The Emperor of All Maladies by Siddhartha Mukherjee, MD, PhD, an oncologist and assistant professor at Columbia University. What sounds like it could be the most boring book this year by its title is actually a page turner and has won a Pulitzer Prize. It also gives those of us who have tangled with this vicious disease just a glimpse of its history and the men and women who have made an impact.

I had a chance to meet Dr. Mukherjee at a company event last month, and he was every bit as interesting as his book, which captures the imagination as it looks at where cancer fits in a 20th century timetable of those who have tangled with the crab.

Of course,I may be a bit biased because when I introduced myself he immediately reminded me that he had used a piece of reporting I did on Larry Einhorn,MD, and the first patient Einhorn treated with the chemo combination that eventually cured Lance Armstrong.

Mukherjee takes us into the lives of the researchers - men and women who were often idiosyncratic and often driven by ego, but who solved a piece of the cancer puzzle. He introduces heroes of cancer research such as Sidney Farber, MD, who took on leukemia when it had been "abandoned by internists, who had no drugs to offer for it, and by surgeons, who could not possibly operate on blood," Mukherjee writes. Farber's first efforts to treat leukemia were met with "skepticism, disbelief, and outrage," but his determination led Farber to partner with philanthropist Mary Lasker who taught him how to use the media and the power of advertising to draw public attention to the disease. Lasker is credited with shaking up the ACS and turning it into a powerhouse for cancer.

Mukherjee also adds moments of high drama, including the day when patients gathered for the first study of Herceptin (trastuzumab). All 15 of the trial's initial women had exhausted their efforts for treatment for metastatic breast cancer. Metastatic cancer patient Barbara Bradfield's cancer had metastasized to the lymph nodes near her collarbone and was clearly palpable. As Mukherjee writes:

"On the morning of the first intravenous infusion of Her-2 antibody, all the women came up to feel the lump, one by one, running their hands across Bradfield's collarbone. It was a peculiarly intimate ritual that would be repeated every week. Two weeks after the first dose of the antibody, when the group filed past Bradfield, touching the node again, the change was incontrovertible. Bradfield's tumor had softened and visibly shrunk."

I think this vision is haunting for me because I know of so many women whose tumors who could be felt, and I could almost feel the joy as those women understood from touching Bradfield's tumor what must be happening to their own.

Most haunting in terms of today's needs is Mukerjee's discussion of the pressure brought to bear on the government after the first man walked on the moon. Cancer activists wanted a "programmatic" effort to cure cancer, just as there had been a concentrated effort to build the atomic bomb in Los Alamos and to put a man on the moon in Houston. It's an intriguing thought. What if all the cancer researchers moved to a remote location and worked in collaboration on the cure for cancer?

And this is one place where the book stops short. When activists demanded action from President Richard Nixon in a full page advertisement in the Washington Post in December 1969, they used the number of Americans dying each year from cancer as their proof that that the nation had to declare war on the disease. The figure then: 318,000.

Today, it's more than 500,000 -- an estimate of 1,500 Americans a day. More people are being cured, but more are dying. Is that progress? Where are we failing? What needs to be done to speed the process?

My other issue with the book is that nurses aren't present or even mentioned. Oncology nurses have become a critical part of the healing of cancer patients in this country and it didn't happen overnight. It's time they are brought out of the shadows of patient care and their professionalism, research and commitment to cancer is recognized and applauded. Perhaps that will be Mukherjee's next book.

• Cancer Coach on your mobile phone
• Shoes for ovarian cancer research
• Advanced screening of 50/50 in California
• Film offers powerful images of John Kaplan's lymphoma journey
• Showtime's The Big C

The environment and cancer

BY KATHY LATOUR | NOVEMBER 28, 2011

Cancer results from a complex interaction of genetic and environmental factors. However, only 5 percent to 10 percent of cancers are hereditary , meaning that a person was born with a gene that makes him or her more likely to develop cancer. Therefore,90 percent to 95 percent of cancers are caused by external factors such as lifestyle choices that includes, among other things, smoking, diet, obesity and drinking alcohol.

Also included in external factors are environmental causes such as exposure to radiation and chemicals, and viral or bacterial infections that can damage cells and weaken the immune system. In the Winter issue of CURE, we begin a two-part look at the environment and cancer with the hope that it will help clarify some of the complexity and confusion around this controversial issue.

It seems appropriate we begin this discussion in 2011, a watershed year for the issue with voices from policy, science and advocacy bringing the discussion into the spotlight.

In March, the National Resource Defense Council (NRDC) and the National Disease Cluster Alliance released a report focusing on "disease clusters" in 13 states, those places where "an unusually large number of people have been sickened by a disease such as cancer or experienced birth defects and other chronic illness."

In May 75,000 names on a petition were delivered to top environmental officials in the Obama administration requesting a response to the 2009 President's Cancer Panel report, which called for a national strategy to eliminate the use of cancer-causing chemicals.

In addition, two pieces of legislation focusing on cancer causing chemicals and needed government action have been placed before Congress.

Determining environmental causes of cancer is quagmire of politics, science and the human factor. It pits researcher against researcher in complicated and often contradictory science.

Take, for example, the May 31st announcement that the International Agency for Research on Cancer (IARC) had classified wireless cell phone use as "possibly carcinogenic to humans," placing it in group 2b of the list of carcinogens.

The next day the headlines read "Cell Phones May Cause Cancer," but few of the stories explained that the classification puts cell phones in the same category as numerous chemicals ending in ene and ine as well as coffee (which has some evidence of causing cancer of the large bowel), gasoline engine exhaust and pickled vegetables. Category 1 agents (classified as carcinogenic to humans) includes 107 chemicals with recognizable names such as arsenic, asbestos and strontium-90. But category 1 also includes alcoholic beverages, leather dust, wood dust and salted fish (Chinese-style).

This finding by the IARC still doesn't clarify cause and effect, says David Gorski, MD, PhD, managing editor of Science-Based Medicine and a researcher and surgical oncologist at the Barbara Ann Karmanos Cancer Institute in Detroit, who points out that epidemiological studies are particularly difficult because of the variety of factors involved as well as the design of studies.

"We set statistical significance at 5 percent chance that the result could occur by random. If you do 20 studies you will get one that looks positive. And all studies have confounders, particularly epidemiological studies." This, Gorski says, is why one outcome from a study must be duplicated.

This is not to minimize potential cancer causing agents, he says, some of which have been tracked down and identified, tobacco for one. What it points out is the complexity of identifying and proving something is cancer causing and the ability to read through the science speak to determine the actual message. It took 14 years for action against tobacco.

The cell phone debacle came only a month after the 25th anniversary of the Chernobyl nuclear meltdown in Ukraine, which was six weeks after an earthquake damaged the nuclear reactor at the Fukushima Daiichi plant in Japan, sending radiation into the surrounding air and countryside. Scientists now know that cancer clusters followed Chernobyl and are applying this knowledge to the Japanese incident to determine who is at risk for long-term effects and how to ameliorate them.

The entire issue is complicated and confusing – and increasingly important, advocates say, as more chemicals enter the environment. Whether any of the questions proposed this year around the relationship between toxic chemicals and cancer will be answered remains to be seen. Understanding the connection requires sorting through the political, scientific and human aspects of the issue, and we hope that the two features we are presenting will do just that.

• Two new drugs approved, one pulled from the pipeline
• Cancer screening rates low
• A call for more pancreatic cancer research
• An introduction to cancer: From a father and his daughter
• The cushion of silence

Pink power moms unite

BY KATHY LATOUR | NOVEMBER 21, 2011

This weekend I was surrounded by 40 powerful women, all mothers, all breast cancer survivors. We gathered in Atlanta, the home base of Kids II,a Georgia-based company that makes infant toys and educational products. Since 2007, Kids II has identified eight Pink Power Moms annually from around the country, women who have made a difference since their diagnosis. Kids II honors the women by supporting the nonprofit of her choice.

These women were nominated because they have created solutions where they saw need in their communities. One mom decided there needed to be waiting rooms for the children, another decided to create a program for young women and another created Breastfriends, which teaches friends and family how to support a person with cancer.

What is wonderful about these initiatives is that they are locally grown and supported and reflect the energy of women.

The programs are as varied as the women, who come from more than 20 states. You can read about each one and her mission on the Kids II website.

I was particularly impressed with the organization created by Mary Ann Wasil Nilan. She was initially diagnosed in 2004 and founded the Get in Touch Foundation to educate young girls about breast cancer and encourage breast self exams. She created an interactive tool called the Daisy Wheel that is aimed at girls in grades 5 to 12 to encourage BSE. Since launching the Daisy Wheel earlier this year, it has been downloaded globally. Nilan, the mother of three, was named the Pink Power Super Mom by Kids II this year, an honor that brought with it a $20,000 check for her endeavor. Nilan brought her daughter with her for the weekend, as many of us did, and it was hard to know that she is also dealing with a recurrence this year in her spine and bones. But, it has yet to slow her down.

In all these women, many of whom are metastatic, comes the power for change. And that is strong stuff.

• 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
• Video blog: HER2-targeted agents
• Video blog: Complications with brachytherapy in breast cancer

Who walks for you

BY KATHY LATOUR | NOVEMBER 14, 2011

The playground of the Scottsdale, Arizona, elementary school was covered with bodies on Saturday as the 1,400 walkers in the Susan G. Komen 3-Day for the Cure sprawled on the grass checking blisters and changing socks. The lunch break on the second day of the 60-mile walk was a welcomed break for the walkers, each of whom raised a minimum of $2,300 to take part. They were at the halfway mark of the event.

The men and women just arriving for lunch looked through the sea of bodies to find their team, hoping to spend a few minutes together before taking off on the afternoon leg of the walk.

Some of the 36 members of Team Thrivr were waiting for their leader, Greg Hoffman, who for the second year headed the top fundraising team in Arizona, adding more than $125,000 to the dollars Komen will distribute this year. Since the beginning of the 3-Day, more than $600 million has been raised from the walks, which occur across the country.

Hoffman explained the Thrivr moniker, explaining that he had to leave out the "e" to be able to get the whole team name on his custom license plate.

Hoffman began walking the 3-day with his wife Jen, who died in 2009 of breast cancer at age 37. His team includes friends of Jen's, family, and two walkers from a past 3 day who Greg and Jen met one night at the campground when they couldn't figure out how to blow up their air mattresses.

Also walking with Hoffman this year was Diana Rowden, a survivor and vice president of survivorship for Komen National.

As more of the team made it to lunch, the energy level began to rise as the group prepared to take off for the next leg of the trip with stops at the medical tent to have blisters doctored or new pressure points bandaged.

Hoffman and I chatted for a minute about the time commitment of the 3-Day for him. Fundraising, he said will start in January. When I said he had turned it into a 365-Day event he said they take one month off. "In December we take a break. If someone says they have an idea for a fundraiser, I tell them to call me in January."

As Team Thrivr headed out, I noticed the quote that Hoffman had added to the T-shirt they all wore.

"To survive is necessary. To thrive is elegant." Maya Angelou

• When the cancer comes back
• The cushion of silence
• The cushion of silence
• Cardiac issues and Avastin
• Surviving cancer

Cardiac issues and Avastin

BY KATHY LATOUR | OCTOBER 23, 2011

One of the issues for cancer survivors is the long-term and late effects of treatment-- from both radiation and the drugs used. For example, we have known for a long time that doxorubicin (Adriamycin) has cardio toxicity issues, and those who receive this drug need to be monitored. If you received Adriamycin, you had a heart scan before treatment and one after to be sure your heart was not damaged. I visited a cardiologist a number of years ago to get a good cardiac baseline when I was around 20 years out from treatment. I had been followed over the years and no problems had shown up, but I thought it was time.

The late effects of radiation are also becoming better known as those who received radiation live long enough to begin exhibiting cardio and muscoskeletal problems. This weekend while attending a conference on Cancer Survivorship for Clinicians put on by Dana-Farber Cancer Institute and Harvard Medical School, I heard of new concerns around Avastin and heart issues. Cancer patients who were treated with VEGF or VSP inhibitors – the drugs that target the angiogenic pathway, need to be followed for cardiology problems because these pathways are also essential in normal cardiac function.

The research around renal patients by Javid Moslehi, MD, co-director of the cardio-oncology program at Dana-Farber Cancer Institute, is scheduled for publication, and it follows researched released earlier this year around women with metastatic breast cancer who took the drug.

Basically, Moslehi showed increased hypertension, arterial thromboses including myocardial infarction, arrhythmias and heart failure in some patients. So the message is clear. If you have received these drugs, be sure you are being followed for cardiac problems.

• When the cancer comes back
• The cushion of silence
• The cushion of silence
• Who walks for you
• Surviving cancer

Surviving cancer

BY KATHY LATOUR | OCTOBER 20, 2011

The room I am sitting in is filled with oncologists and nurses and cancer administrators from some of the country's largest - and smallest - cancer centers. They have gathered here in Boston as part of the LIVESTRONG Survivorship Leadership Training Institute to talk about cancer survivorship and how to create programs that will help us move from cancer patient to cancer survivor as healthy individuals.

As usual, I am in awe of these professionals who have devoted their lives to those of us struggling with cancer. They know, as do we who have been there, that it's not over when treatment is over. There are long-term and late effects. Survivorship programs are an idea whose time has come.

And it's harder than you might think to make it happen. A few of the questions they are addressing include program design - is it a clinical program that is most valuable, where cancer patients arrive with survivorship care plans in hand to see physicians or nurses to be watched for second cancers and other physical issues? Or does the program address psychosocial needs of survivors as they struggle with fear of recurrence, fatigue, anxiety and all the other emotional challenges we face? Or is it a research program where the studies are conducted to say that we need survivorship plans to live fully after cancer and for the rest of our lives? It's the research that will ultimately get insurance companies to say there is benefit in paying for these programs.

These are huge questions, and the 200 or so who are gathered are so passionate about helping people who are going through cancer. I can remember so well how abandoned I felt after treatment ended, when I lay awake at night and projected the absolute worst scenarios for my future. If only someone had told me to be prepared to live with the fear of recurrence, I could have battled the dark nights so much better.

CURE has been committed to covering survivorship issues and will continue to bring you the latest in where we are.

• When the cancer comes back
• The cushion of silence
• The cushion of silence
• Who walks for you
• Cardiac issues and Avastin