Turned the Corner? Not Yet.

I was standing in the corridor at Johns Hopkins today, and a man was pushing his small son in a wheelchair toward me. The son looked to be about 6 or 7. He was holding on tight to what I could only assume was his favorite teddy bear. It was beaten to a pulp in the way that only happens to a kid's most favorite friend. The boy was starting to lose his hair. Clearly he wasn't riding in the wheelchair just for fun. I smiled at him, and behind the bear that he was holding in front of his face, he gave me the greatest smile back. He made my day.

I wanted to write today about the news that made all the headlines over the past couple of days. It was front page in the papers and led the evening newscasts. As I'm sure all of you know by now, cancer deaths decreased for the second year in a row. The numbers themselves are pretty tiny, only about 3,000 fewer deaths. That's obviously good news, but when you think that there are roughly half a million cancer deaths a year, you realize how far we have to go.

The coverage itself was interesting. You heard phrases like, "We've turned the corner on cancer," and so forth. One thing struck me about the TV coverage: I never once saw a patient. You heard from experts, the numbers flashed on the screen, but the people who are sick, the people with cancer, were nowhere to be seen.

The decline in deaths is partly due to better screening, fewer people smoking and so on. It does not mean that more people are being cured. When that happens, that's when I would say, "We've turned the corner." We've talked before about screening, how important colonoscopies are and so on. And we are clearly making progress on that front. But what I want to see is something that will help the people who have been attacked by the monster.

I want to know when that little boy with the bear will have a better chance to live.

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I'll know we've turned the corner when Cancer discovery and treatments are like a visit to the Dentist and the subsequent drilling and filling- not pleasant, but bearable. When a Biopsy is not a thing to be feared.

With every Biopsy, a part of me dies,A part of my body, a part of my spirit,Like a rock beaten down by the constant drip-drip of water,slowly, surely, wearing, gnawing.

Variable is the location,Constant is the anger, the worry, the despair,A needleful of my Prostate, a snip of my skin, a scrape of my mouth,Death of tissue, death of psyche.

The bliss of benignity, or the malice of malignancy,Which will it be?Push the pause button on your life,Don't start anything new!When, Dear God, when will that Doctor call?

I look forward, like you do, Leroy — to a time when that little boy will continue smiling for a long, long lifetime.

Sent by Don Winslow | 9:46 AM ET | 01-19-2007

Leroy,

You hit home every day. I, too, was left empty from those reports, especially being on the losing side of the fence. I recall taking my Mom to Sloan Kettering for desperate help she couldn't have. Her concern every time was for those children in their wheelchairs and quietly playing, waiting for their turn for appointments and help. My cancer center doesn't accept children under 17. I know I would cry for them if they were there. And where is the cure for some of us? It has to be there somewhere. I was reminded my cancer has no cure or remission this week — on to a second chemo combo. I quipped "no remission or cure because it doesn't exist." My comments drew chuckles, the desired result. Thankfully my oncologist has been on the trials end of chemos, has excellent connections for consultations and he'll try his darndest to keep me going as long as he can. I'd like to live to 60. Let's hope our best and brightest doctors will come upon something to cure very soon.

Sent by Cheryl M. | 9:51 AM ET | 01-19-2007

It's always interesting to see how the media filters what it deems we should or shouldn't see.

You can see a bloody car blown to bits in another corner of the world where conflict rages.

You can see dead soldiers, as long as they aren't from "our side."

Those with diseases, be it cancer, muscular dystrophy and other such diseases, you can show, but only during telethons, when you are sorely trying to raise sympathy and have people reach for their wallet and donate.

The rest of the time, they are to be avoided. Showing them disturbs the viewer, and disturbing viewers is bad: they switch channel, you lose ratings and that's bad news.

Don't you sometimes get the feeling were living in a parallel world, one where the vision the media gives us of the world and the reality of the world are miles apart?

Sent by Benoit Bisson | 10:04 AM ET | 01-19-2007

Amen.

Sent by Brian Bogardus | 10:37 AM ET | 01-19-2007

Thanks, Leroy, for mentioning this story.

You're right — we are making important headway, but haven't got a "cure" as such. You know that this is, in part, because cancer is many different diseases — in the same cell types, as well as in different cell types. Melissa Block's interview of Allen Lichter pointed out, as did Leroy, that these nice numbers reflect the idea that screening has got ahead of population growth. We all need to realize that the "baby boom" will once again skew the numbers, as the incidence of cancers is age related. We are also (on average) living longer.

But don't be discouraged, science has made great progress in my lifetime — since my grandmother only had radiation, back in 1950. Here is a condensed scorecard as I see it:

Thirty years ago, when I was in graduate school, the "war on cancer" was just getting organized. There was a massive effort to screen every unusual plant material, in an attempt to find something that would poison rapidly dividing cells with greater facility than ordinary cells. This is undoubtedly the effort that led to Paclitaxel and other taxol-realted drugs. Drugs like 5FU came earlier, when I was in junior high.

In the last two decades since the human genome project was announced, the increasing understanding of molecular biology within the scientific community has led to the ability to map out the many pathways within the cell and understand their complex interactions. [There is a minority opinion that decries the Human Genome Project as wasteful ? they say that drugs are mainly still discovered the old fashioned way. I disagree. It's kind of like mapping the new world. The information eventually will become our collective knowledge and empower our human wisdom.]

In recent years, we can make cells that incorporate the (hypothesized) disease mechanism and test various strategies to intervene — and hopefully stop the aberrant cells. This is all the more important, since animal models are not always predictive.

Understanding the pathways at the molecular level also lets us find new ways to intervene. For example, the other day, I noticed a clinical trial of conventional cytotoxic drugs administered along with a new inhibitor of one of the DNA building block pathways. Way cool!

Will it work? My fingers are crossed, especially when I look in the eyes of people I know who would benefit. Unfortunately, you're right, most of us seldom hear the patient's voices or meet them in person.

The little boy with the teddy bear, Leroy, my friend T and countless others are the reason why we channel our commercial and national treasure toward this problem. I also pray for them every day. It's why we're starting a new company — why others I know are doing the same. All of my scientist friends are motivated by the thought that they have the potential to do enormous good. They have been given much, and know that much is expected.

From my office, I can't actually see these people every day — Leroy and the little boy, I've never met. I am going to put a teddy bear on my desk — as a reminder of why I'm here.

Can you all do the same?

Sent by Emile Bellott | 10:43 AM ET | 01-19-2007

One of the comments I constantly see regarding lung cancer prevention through anti-smoking campaigns. What about the growing number of us who never smoked and get it? Decreased cancer through better screening but as you said — a cure would be much more to celebrate! (But then the drug companies wouldn't have all us patients to milk for big bucks. How hard are they REALLY working for a cure?)

Sent by Marcia Greer | 11:00 AM ET | 01-19-2007

I so much want to thank you for you sharing some of your questions, worries, and thoughts with your readers. It helps me, as someone who deeply loves another person in my life who is battling cancer to better understand what her experience might be like. My aunt is suffering from stage 4 breast cancer and I have so much wanted to talk with her about it in an authentic way and cry with her. She means so much to me yet I've done none of those things (in her presence). I think that were both expending a lot of energy trying to protect each other from the pain, rawness, and loss that this all represents for us both, individually and together.

I've been reading several books — the most recent, Final Gifts. I am beginning to realize that, the very thing I want most — her physical healing so that we can be together for a very long time, may not be possible. While I want to hold onto the possibility for some miracle cure, I have begun to rethink my role in support of her journey. I have started to see myself as someone who can help with her emotional, mental, and spiritual healing. Cancer can't take away those things and perhaps this is the work of the person and the people who want to so desperately feel useful and supportive.

Sent by Tina Price | 11:06 AM ET | 01-19-2007

Leroy,

I have grown extremely skeptical about media hype and newsmaking. I don't put much stock in anything I read that doesn't have hard facts and explanations.

How must it feel to read that cancer deaths are down — for all the reasons you have outlined — and be one of the unlucky ones who still have it?

The piece I saw on TV had Dubyah smiling like he had accomplished this statistic all by himself. What was HE doing there? It was Clinton who made funds available for research. Bush has cut funds several times.

Sent by Diana Kitch | 12:19 PM ET | 01-19-2007

You hit the nail on the head: fewer deaths does not = more cured. Many of the studies also base survival rates on the magic five years, there has been little change in the rates for survival over five years. Oh, and let's talk about the young adult group (those over 18 and under 40) who have had NO, that is ZERO increase in survival/ cure rates since 1973.

Yes, we have a long way to go and media reports like those splashed around the past few days do us no favors. I am all for being positive and there have been remarkable strides in certain fields of cancer research and treatment, but as long as just about every other one of us will face it and so many of us will die from it, we have not turned the corner.

Sent by Chris | 12:21 PM ET | 01-19-2007

I also AMEN you and everyone today that responded with heartfelt thoughts.

Sent by Marianne Dalton | 1:38 PM ET | 01-19-2007

Leroy,

We've turned the corner on cancer? I don't think so. It feels to me as though we are seeing more and more cancer, not less. Maybe fewer people are dying of it, but that seems a hollow victory. I still get to die of it, and that seems so unfair. I don't want to! Nor is fair that that poor little boy, or the little girl about age 10 that I used to see when I went to radiation, should die of it either. We have discussed the randomness of cancer. No one deserves it! What an abomination. As your T-shirt says, "Cancer Sucks!" And it seems sort of false to say we have conquered cancer. It just ain't so.

Sent by Stephanie | 5:42 PM ET | 01-19-2007

I love the suggestion from Emile Bellott to put a little bear on our desks to remind us of that little boy, and all little children, having to go through cancer. I already have a stuffed bear on my desk, from a fund-raiser for the Leukemia and Lymphoma Society, but I will now look on it differently as a reminder of little kids suffering from cancers and of trying to make a difference so that someday, kids (and adults) won't have to go through it.

Sent by Art Ritter | 5:43 PM ET | 01-19-2007

When I heard the news and saw it splashed on TV I had mixed feelings. Happy that not as many lives as before were lost in this perpetual war against cancer, but sad because it occurred to me that I was part of those statistics. Leroy, you and I and all the others diagnosed with cancer and who are still alive made up those statistics. I felt a gross oversight had been made in the coverage — the figures said nothing about the time lines of these battles or what it took to keep us alive... my story, your story, our story — those many others accosted by cancer. That news I am sure included cancer victims in remission as well.

Seven years now I have been battling with cancer. It invaded in 2000 and retreated into remission by 2002. There was a ceasefire 'til late 2005 and now I am on the losing end of the war. But I still made those figures because I'm still alive. I wonder where my good friend Anne fit in with those stats. She was only diagnosed in March of last year and by early December she passed away. Overrun by a rather aggressive form of the disease in 9 months. Was she one of the 3000, or did they just omit her? Sadly to friends, lovers and family of my friend Anne and the millions of people like her, who made the other side of those figures, that news did not ease their pain or loss by much. That news did nothing for me because it did not tell me how to or what will definitely keep me on the 2007 list of those with cancer who did not die. Or even better how to get out of the stats of people who have cancer. Wouldn't that be nice to be able to say that I had cancer once, but I'll never get it again.

I pray and hope for the day when all forms of cancer will be put on par with diseases like measles (by discovery of a vaccine) or even strep throat (with a cure). That news would make me very happy I wouldn't care what part of the stats I was in and the thought of infants and little children undergoing what I deal with wouldn't make me question my spirituality or the future of mankind.

Sent by N. Amuny | 5:51 PM ET | 01-19-2007

Every time I see, read, or hear about a child with cancer the tears come to my eyes. I know there is no point in railing at the universe, at the unfairness of it, but a child with cancer is too sad for words.

I am on my own journey with my cancer, for a year now. I don't want to go, but I can think about my own mortality with a sense of perspective. But every time I see someone like the 9-year-old boy ahead of me at the PET scan trailer last Friday (and what a chipper little guy he was!) my heart just breaks a little.

So here is hoping that the remarkable progress being made in cancer research and treatment helps all the children, and maybe us old guys, too.

Sent by Bill | 4:20 PM ET | 01-23-2007

I have been listening to you on the radio for a while and finally have a chance to write THANK YOU for your courage, your honesty, and your willingness to share your experience with us. You are truly inspiring. I find myself praying for you and all who are suffering from cancer. You have touched me deeply with your stories. God bless.

Sent by Luz | 5:23 PM ET | 01-23-2007

Perhaps the corner we just turned is the small one that has politicians mentioning cancer. The efforts of Lance Armstrong seem to be gathering an army of people demanding we give this the attention and funding needed.

Sent by Jerry Kelly, cancer survivor | 5:38 PM ET | 01-23-2007

Leroy, thank you for your comments about the recent media blitz on cancer. At this time, I am bearing witness to the struggle of two men who are battling cancer, one diagnosed two weeks ago. From my perspective, we are not closer to a "cure" until there is relief from the despair, disbelief, and disruption of the way life was before cancer entered the picture. After my best friend of forty years died two years ago from colon cancer, I thought I couldn't experience this again... but I am. I will read your journal entries with constant hope for you and all the others on this particular journey.

Sent by Pat Z. | 5:42 PM ET | 01-23-2007

Also worth mentioning is that while the number of deaths from cancer are down, the number of people diagnosed with cancer continues to grow and is expected to continue its climb in the future. Another bummer thought is that while more people are living after cancer diagnosis and treatment, more people are coping with difficult side effects from having chemo and/or radiation. We are still a very long ways from a cure. Hang in there everybody.

Sent by Martha | 5:44 PM ET | 01-23-2007

I took care of my mother when she had cervical cancer. I kept all the letters we wrote to each other during this time. I hope these letters can be used to help someone else. I have posted them on www.myspace.com/elizabethfeaster.

Thanks.

Sent by Chris | 7:15 PM ET | 01-23-2007

As an almost-10-year survivor, I'm one of the lucky ones — not because of any effort on my part, but only because the radiologist who read my mammogram had enough credibility with my doctor, who didn't think a biopsy was really necessary, but did it anyway. So we did the biopsy, then the surgery and the radiation, then more surgery - but it's such a small price to pay for these ten years of health. God bless you Leroy, with health and hope and doctors who keep trying.

Sent by Barbara Gaither | 12:06 PM ET | 01-24-2007

This past Sept. 30, I was present as my dad died, not from cancer, but from the chemo drugs and an inexperienced, callous young oncologist. She, incidentally, was NOT present at my father's final agonized moments. As a result of what we saw happen to my dad, who trusted doctors, my mother and my sibs and I have all changed our advance directives so that no one can foist these poisons on us if we develop cancer. As an RN, I've taken care of patients dying from all kinds of causes, and I would definitely choose to die of cancer than of the horrors of chemotherapy (particularly, the drug 5-FU). I still have nightmares of my father's final moments.

Sent by Kate | 12:17 PM ET | 01-24-2007

I didn't hear any mention of the status of childhood cancer in the media reports this week. For a period of time, my daughter was that girl in a wheelchair in the halls of Sloan Kettering that maybe some readers passed by at some point. But now she is dead, dead from the vicious childhood cancer neuroblastoma, having only had 12 years of life. Neuroblastoma is the second most common solid tumor type of cancer in children but few people have ever heard of it. The survival rate for neuroblastoma hasn't improved very much compared to other childhood cancers. Not only do many neuroblastoma patients face bleak prospects, but the anguished and tragic stories of these young patients are known to few outside their communities of support.

www.caringbridge.org/visit/laurastiles

Sent by Mara Stiles | 1:34 PM ET | 01-24-2007

It struck me today reading the various comments in the "My Cancer" blog that many of the commenters were not satisfied with the recent cancer-related "stories." We may not like it, but what are we doing to change it? Don't care for the current media monologue? Contact the news organizations and provide a different perspective! Is funding down for research? Contact the various cancer research institutions and the members of your congressional delegation! With continued deficits, future cuts to cancer and other related research will undoubtedly continue. Our only option is to actively participate!

Perhaps we frame the discussion with our politicians in terms of the extraordinarily high costs associated with cancer. Unfortunately, it often appears as though money strikes a louder chord with our politicians and corporate America than does humanity and the problems we face! The future benefits to the economy and the long-term savings from decreased health care costs by finding effective treatments and/or cures will be substantial for the country.

Since diagnoses, I'll guess most of us living with cancer (including family, friends, and care-givers) have been "reminded" to not take things for granted...Perhaps we've taken the national perspective on cancer diagnosis, treatment and cure for granted. Of course it's a horrible disease! Of course the general public thinks a cure should be found for cancer! Of course we have "turned the corner," ABC, NBC, CBS and CNN just told me we did, we must be able to relax now because a cure is just down the block! We shouldn't assume anything and start steering our special little cancer craft, as best we can, in this formidable ocean of feel-good sound bites and competing priorities.

It seems to me that all of us share an obligation to make a difference for someone that is diagnosed with cancer in the future. Sooner or later, it will benefit all!

Thank you Leroy and NPR for bringing the many different faces and perspectives of cancer together!

May many blessings and improving health find you Leroy in the coming days!

Sent by John | 2:12 PM ET | 01-24-2007

Thank you for your comments on turning the corner on cancer. I have stage IV breast cancer — incurable. I had annual screening but with lobular breast cancer it does not visualize on mammograms or sonograms. By the time I was diagnosed it had spread extensively to my bones. Even though we do not have the same cancer our feelings about many issues are the same. I even had a friend tell me that with all the money that goes for support of breast cancer research and treatment there is enough being spent.

So why can't I be cured? Or you? Plus the government is taking credit for this drop when they decreased funding last year for cancer research. Having cancer stinks. I am thrilled because I get to not go to the oncologist next month. I get a month off because I am starting a new treatment (because my last one failed) and we need three months to determine if it will be effective until it fails also. Thank you for your daily posts. I hope you are reaching more than just the choir.

Sent by Becky Stead | 2:49 PM ET | 01-24-2007

I can only start by saying I love you — I have a co-worker who recently retired only because of the same issue, CANCER. I would love to see him back to work. A few years ago his wife battled with cancer. He and his children worked with her to keep the faith and things were going OK. Years of remission. Later on during her recovery he started having problems, now, needless to say, they're BOTH home in a fight for there life. What can co-workers do to motivate him?

Sent by Trouble D. | 3:55 PM ET | 01-24-2007



   
   
   
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