Guest blogger Karen Holmgren recounts her cancer story, in light of a new study suggesting that some of her treatment may have been unnecessary:

In 1997 after a routine mammogram I was called in for follow-up images. I thought nothing of it (technical error, perhaps), but 10 days later I was told to make an appointment with a surgeon as soon as possible. He scheduled me for a biopsy, assuring me that "95% of these things are benign." 

Because the area in question was small and deep, the biopsy was preceded by a very stressful ordeal to locate it. I was clamped in the mammogram machine for at least 20 minutes while an image was taken and developed, then the doctor inserted a wire into my breast, aiming for the target. Another image was taken and developed, and he adjusted the wire. Repeat a third time. I could not move until he was sure he had located the tumor. Then it was time for the surgical biopsy, for which I received general anesthesia.

Being confident that I was OK, you can imagine how stunned I was when he called me late on Friday to tell me that it was malignant.  I had a whole weekend to freak out before I was able to find out more. It was called Ductile Carcinoma In Situ (DCIS), about 0.5 mm, Stage 0. (I later learned that DCIS is a non-invasive lesion.) The sample had "no clear margins" which meant that there seemed to be evidence of additional areas of concern. His recommendation was a modified radical mastectomy, which he wanted to schedule the following week before he went on vacation. I insisted on consulting an oncologist. She confirmed the diagnosis and said that mastectomy was the only recourse; no radiation or chemotherapy would work. You can imagine how sick at heart I felt. For days I had the urge to just scream. I found a woman surgeon who was very kind and assured me I wasn't going to die and that surgery would give me a long life. 

So I had it, a modified radical with the removal of 13 lymph nodes, and an implant. And when I got the pathology report, it said "No evidence of cancer." One of the maddening aspects of this is that I was laid off from my job just as this began to unfold, so I had only a very limited conversion insurance plan that paid less that 15% of my costs.

In a recent report in the New York Times I read, "In 2006, Susan G. Komen for the Cure, an influential breast cancer survivors’ organization, released a startling study. It estimated that in 90,000 cases, women who received a diagnosis of D.C.I.S. or invasive breast cancer either did not have the disease or their pathologist made another error that resulted in incorrect treatment." It's hard not to wonder if that was true for my case. So I want other women to know that if they get a bad diagnosis, get a second reading of the biopsy before agreeing to any surgery, radiation, or chemo! 

It took me a long time to get over feeling disfigured. Now I guess I have to get over feeling pissed!



Read more about this study here: http://www.nytimes.com/2010/07/20/health/20cancer.html?_r=1&ref=stephanie_saul

 
 
As someone lucky enough to have survived melanoma (thanks to a quick-thinking family doc and a derm surgeon willing to take on an emergency procedure), I wasn’t sure whether to laugh or cry when I read that talk radio kooks were calling the tanning-salon tax an attack against white people.  As in black president has it in for whites, etc.  Rush Limbaugh et al urge the public to rise up and demand the repeal of this heinous levy.  

See: Is the Tan Tax Racist?

Building on the successful anti-smoking model that includes the federal cigarette tax, legislators included a 10 percent sales tax on the use of tanning beds, as part of the health-care reform package. They hoped it would discourage people – especially young people – from using the machines, since studies consistently show that practice raises a person's risk of developing melanoma, one of the deadliest and fastest moving cancers you can get.  

Listen up, talk show hosts and ltheir fans: Melanoma knows no race, and does not care about your politics. About 70,000 blacks, whites and people in between, as well as Obama lovers and haters will be diagnosed with this deadly disease this year in the US. Many will be those who frequent cancer farms -- excuse me -- tanning salons. Others will get their deadly rays the old-fashioned way.

So far, the studies are clear: If you insist on exposing your skin to too much UV (artificial or natural), you increase the likelihood of developing melanoma. Period. How much is too much? Who knows.

One thing is certain: If the tumor is not caught early (like mine was), you won’t have long to worry about the tan tax or others.  


 


 
 
Most people forget that 1/more than half the people in the US who develop cancer survive five years or more, and  that 2/nonmelanoma skin cancer and lung cancer (not breast or prostate) are still the prevalent cancers in this country. Here are two important cancer stories from this week’s New York Times, in case you missed them.

Important leap forward in treating a certain type of lung cancer and melanoma:
Scientists Cite Advances on Two Kinds of Cancer, by Andrew Pollack, June 5,2010
http://www.nytimes.com/2010/06/06/health/research/06cancer.html?hpw

A (very) little bit of cancer (or none) can be a good thing:
A scare, a scar, a silver lining, by Nicholas D. Kristof, June 4, 2010
http://www.nytimes.com/2010/06/06/opinion/06kristof.html?hp

 
 
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Dear Wonderful Women!
 
Just a reminder to you that October is Breast Cancer Awareness Month,
and if you haven't done it lately, it's time to schedule your yearly mammogram!! Yeah, yeah, it's not fun, but I can tell you from personal experience, breast cancer is a pretty scary experience.
 
And don't think you're safe just because your mother, grandmother, or sisters never had it. No one in my family had had breast cancer, but there I was, with a diagnosis that knocked the wind out of my sails.

But I was lucky: It was discovered early - through a routine mammogram - and a radical mastectomy was all the treatment I needed. No radiation, no chemo.
 
It's been 12 ½ years since the diagnosis/surgery, and I'm in great shape. Tomorrow is my mammogram appointment. I hope to see you there!
 
Love and life!!
Karen
 
PS: Don't forget regular self exams, too!
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I’ve always been fascinated with the Human Genome Project (HGP), perhaps because that single effort by thousands of scientists from around the world offered such extraordinary promise to this generation, and to those that will follow.

With a map of the genes that form human chromosomes and with an outline of the sequence of all three billion units of DNA that constitute one set of those chromosomes, scientists could begin to actually quantify and describe what makes a human, human. (Not much, it turns out!)

They also could point to the miniscule differences that (might) make each of us unique. Those differences might help us succeed as athletes or mathematicians, or could predict how well or poorly our body will respond to the myriad environmental assaults it will endure through a normal life.

Every week, we read about research that picks up new connections between genetic combinations or anomalies, and disease. Thanks to the science that went into the HGP, we know there are markers for certain cancers, Huntington’s disease (remember Dr. 13 on House?) and some aspects of cardiovascular disease, among many other conditions.

According to a 1997 story in The Judges’ Journal of the American Bar Association, the Human Genome Project has given science a great set of tools to understand and, perhaps, fend off some human suffering caused by disease.

Using information gathered from genetic testing, physicians counsel patients on their risk for a number of medical conditions. Sometimes, they can help a person build a lifestyle or find other ways to reduce that inherited risk. Sometimes, they can’t.

After all, risk is -- by definition – a numbers game.  

Within our family, I can think of at least four people – three of them, young – who have considered genetic testing to determine whether or not they carry a marker for a particular cancer. In all cases, a parent’s cancer was considered familial long before there was science to prove it.

All four have declined testing. I don’t know why, but this op-ed in Sunday’s New York Times may provide a clue:

The New York Times
October 4, 2009

Dad’s Life or Yours? You Choose
By NICHOLAS D. KRISTOF

So what would you do if your mom or dad, or perhaps your sister or brother, needed a kidney donation and you were the one best positioned to donate?

Most of us would worry a little and then step forward. But not so fast. Because of our dysfunctional health insurance system, a disgrace that nearly half of all members of Congress seem determined to cling to, stepping up to save a loved one can ruin your own chance of ever getting health insurance.

That wrenching trade-off is another reminder of the moral bankruptcy of our existing insurance system. It’s one more reason to pass robust reform this year.

To read the whole piece, click here

 
 
Young adult cancer patients have a new weapon against the insidious disease waging war on their bodies: Humor!

For a look at what they call "cancertainment," see this week's Newsweek Magazine.

Here's an excerpt from A Malignant Melanoma Walks into a Bar...:


About 70,000 people between the ages of 18 and 40 are diagnosed with cancer every year, representing about 6 percent of all new cancer cases. About 10,000 young adults die from cancer annually, more than from any other disease. This is not the best statistic to stumble on when you are looking online for hope, as I did in September 2006 after my doctor told me he found a growth in my colon. There I was—nonsmoker, athlete, young—diagnosed with colon cancer, the disease that more commonly afflicts overweight, elderly men. And all I could think was: how inconvenient. I was a travel writer and had just scheduled trips to Rome and Cologne for the following week. Bummer. I would have to reschedule those flights.



Read the entire story at http://www.newsweek.com/id/209319

 
 
For all you Daisy Mayhem and May Erlewine fans, we went to a super -- but intimate -- little concert last night up in the hills. Way up in the hills.

The event brought together May and Seth from Michigan, with Rani Arbo and friends from various corners of New England. All were in great form.

Naturally, they sang Shine On, May Erlewine's stellar anthem. I told her how many Birds on a Wire readers love her song, and that is the truth! She promises to send a video soon for us to post and enjoy. Thanks, May! 

Sorry all of you couldn't have been there. I know you would have enjoyed yourselves (as long as you were bundled up and dry). The night was cool to begin with, but then it rained on and off. Nobody seemed to mind.  The food and music were superb.

The evening began with a clambake. An enormous amount of steamers, clam chowder, lobster, barbecued chicken, potatoes, corn, strawberry shortcake and berry pie was consumed. Dave and I might not eat again for a week. 

I promise to put up video as soon as I can edit it but, in the meantime, here are a few shots I took of the festivities. Enjoy! 
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This is the weekend to get out on the track and walk as a survivor, raise money with a team, or write a check to support cancer research.


 

Shine On

05/21/2009

2 Comments

 

Here are the lyrics to Daisy May Erlewine's song, Shine On. I think you'll see why I find it perfect  for all survivors, even those of us who simply made it to a certain age.

Knocked me off of my feet
But I think it's time for me to start walking again,
Stop running away from things.
Next time you see me,
I will be singing a new song/
I am learning to shine on.

Shine on, shine on,
There'll be time enough for darkness when everything's gone.
Shine on, shine on,
There is work to be done in the dark before dawn.

It's been hard not to give in,
And it ain't easy living in hard times.
I know it's weighing on your mind.
Next time you see me,
I'll be uplifting, yes I will give you hope!
I am learning as I go to shine on.

Shine on, shine on.
There'll be time enough for darkness before everything's gone.
Shine on, shine on,
There is work to be done in the dark before dawn.

I know how dark it seems,
Feel it coming up inside of me,
And I feel it in you too, in everything you do.
Next time you see me,
We'll both be laughing, oh just to be alive!
We are learning to shine, shine on.

Shine on, shine on.
There'll be time enough for darkness when everything's gone
Shine on, shine on.
There is work to be done in the dark before dawn.

There is work to be done,
So you you've got to shine on.




If you want to hear a snippet of Rani Arbo's version of this song, go to the Daisy Mayhem website, www.raniarbo.com, or go to YouTube to hear May sing it herself:

www.youtube.com/watch?v=-gWfOhhUJ2c 


 
 
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We went to hear Rani Arbo and her band Daisy Mayhem, the other night. As usual, we were not disappointed.

It was an unusually wet and cold Saturday for May, but all of the wooden pews and folding chairs in the old Unitarian church were filled. All you had to do was look around to see evidence of the hall's former use. What a perfect use for a former church! 


And, could there be a better venue for a band that describes its musical genre as “agnostic gospel?”

Aside from the flat-out excitement and originality these four classically trained musicians bring to everything they play and sing, we enjoy their song choice. On any given night, they'll play Leonard Cohen and Bob Dylan tunes, old hymns, folk tunes, American classics, spirituals, and  sometimes country swing. Sit still long enough – I dare you! – and you’re bound to hear songs you know, or almost know.

Rani, herself, is a cancer survivor. She’s probably pushing 40, maybe a little older, and I could be wrong, but I believe she once said her breast cancer was diagnosed shortly after she gave birth to her son. To the delight of everyone in the audience, he sometimes runs around the stage while his parents perform. 

Daisy Mayhem’s latest CD, Big Old Life, focused on survivorship: hers, theirs and ours.

Survivorship was one of the building blocks of birdsonawireblog, from the very beginning. I saw this blog as a safe place for survivors of one threat or another. Sort of a virtual cafe where we can sit around, sip coffee and gain strength from each other.  

Almost half the women I invited to read this blog are cancer survivors. Some are dealing with it right now, today, as you read this post.  

Others, like me, escaped with their lives long ago. My cancer was detected so early, I’m a bit embarrassed to put myself in the company of those of you who endured hellish treatments and relapses. Still, even a "little bit" of cancer left a big imprint on my soul. That's plenty for me, thank you.  

When Rani started singing “Shine On,” it was all I could do to stay in my seat. I’m surprised every woman in the church didn’t rise up and join in to Daisy May Erlewine’s anthem to surviving whatever it is or was that scared them. My grandmother used to say, a little bit of fear is a good thing. I’ll take just a little bit, please. 

For a taste of Daisy Mayhem, go to http://www.raniarbo.com. They travel all around so, if they’re in your area, I encourage you to go hear them. We keep going back, and always have smiles on our faces when we leave.