More on lung cancer

On Monday I talked about the finger-pointing that goes along with lung cancer.  “Did s/he smoke?” is the first question that accompanies the news of a diagnosis.  A couple of days after Donna Summer died, her family released a statement saying that she didn’t smoke.  While that might have been partially connected to Summer’s idea that 9/11 caused her lung cancer, I hear a strong subtext of her not deserving her lung cancer, an effort to separate her from the smokers who die of lung cancer.

And of course, its opposite implication, that people who smoke deserve it.

I think this is an unintended consequence of the extremely effective awareness campaign linking smoking to lung cancer.  Thankfully, smoking rates are decreasing and yes, the incidence of lung cancer is following the same pattern.  But there are two truths that I want everyone to remember:

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  1. Lung cancer will not be eradicated by eliminating smoking.  As many as 24,000 American non-smokers die of lung cancer every year.
  2. Not every smoker gets lung cancer
I’d love it if the whole world quit smoking.  There’s nothing good about it.  But lung cancer, the disease itself, does not exist because of personal choice and is not a punishment for a modern lifestyle.  Yes, its rates have exploded since 1900 and can be reduced drastically, but the disease itself exists separately from known risk factors.  Lung cancer has been documented for hundreds of years.
I know that people use the disease as volleyball to forward their own agendas, often noble and right-minded agendas.  And it is true that there are significant known lifestyle risks. But we should not make the mistake of dismissing the disease entirely or considering a diagnosis any less tragic than breast, colon, bone, or any other cancer.
I also know that it goes beyond the blame game.  We all want to know how we can prevent a horrible disease with low survival rates like lung cancer.  Cancer is, undoubtedly, a bogeyman of a disease; one that exists to some degree outside of our control.  And that, my friends, is a scary truth.  Truth.
We can reduce our risk factors, we can improve our odds, but we can’t eliminate our risk altogether.
If you’re interested in learning more about the history of cancer, I highly recommend The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee.

New Army of Women Study

I did it.  You can too.  (if you qualify).  They are asking some really important questions about the long term psychological and physical effects of breast cancer and its treatment.


We need women in the United States who underwent surgical treatment for ANY type of breast cancer, including LCIS, DCIS, and Stage IV metastatic breast cancer, to take part in an online survey designed to explore the impact of breast cancer surgery on long-term health, quality of life, and satisfaction with care. A research team at Duke University will use the information collected from the survey to help guide surgical decision-making and optimize the long-term health of women newly diagnosed with breast cancer.

Please read on to learn more about what is involved and who can participate. And please don’t forget to tell any of your female friends or family members ANYWHERE IN THE US who are breast cancer survivors about this online study!

What’s the study about?

The overall goal of this study is to learn about the impact of breast-conserving surgery/lumpectomy, mastectomy, and mastectomy with breast reconstruction on a woman’s quality of life, general healthcare experience, and satisfaction with care and outcomes.

What’s involved?

If you’re interested in this study, you will be asked 5 questions to see if you meet the criteria to sign up for the study. If you are eligible to participate, you will receive a link to the study. If you sign up for the Evaluating Patient Reported Outcomes in Breast Cancer study, you will be contacted via email by the research team with instructions on completing the online screening form and surveys.
You will be asked to provide basic demographic information (such as age and ethnicity) and answer questions about your breast cancer diagnosis and treatment, overall health, problems or complaints related to breast cancer and its treatment, and the impact of cancer on your life. The full survey will take approximately 30-45 minutes to complete. You can complete the survey in more than one sitting; you can take breaks as needed.
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Who is conducting the study?

Dunya Atisha, MD, and Amy Abernethy, MD, at Duke University Medical Center, Durham, NC


Anywhere in the United States – this is an online study which you will be able to complete either on a desktop, laptop, or iPad-like technology.

Who can participate?

You can sign up for the Evaluating Patient Reported Outcomes in Breast Cancer study if you meet ALL of these MAIN criteria:
• You are a woman over the age of 18
• You have had a previous diagnosis OR a current diagnosis of breast cancer at any stage. This includes those who have had a previous OR current diagnosis of LCIS, DCIS, or Stage IV metastatic breast cancer.
• You had surgery to treat your breast cancer
• You have access to the Internet and are willing to complete an online survey
• You live in the United States

Sometimes awareness is a good thing

A few years ago, my friend Christine’s young son had a seizure.  Not long after, he had another.  If you have more than one seizure in a year you have epilepsy, a broad diagnosis defined by the Epilepsy Foundation as “a medical condition that produces seizures affecting a variety of mental and physical functions.”  According to the same source, 3 million Americans and 50 million people worldwide have it.  According to a 2010 program on The Diane Rehm Show, more than half of those 3 million Americans are children.

The Charlie Foundation

The stress and chaos this diagnosis brought into her family is her story to tell, but as a bystander, I can confidently say they were significant.

There are so many variants with this diagnosis: Is the seizure in one part of the brain or does it vary?  How often do seizures occur?  What triggers them?  The protocol is to study the brain, to answer as many questions as possible, then try medications. Some medicines are known to work in some parts of the brain better than others, but getting the right one at the right dosage comes with some trial and error.

Meanwhile, kids and families are trying to live their lives.  One of the top seizure drugs, Keppra (levetiracetam), lists the following possible side effects.

Dizziness; drowsiness; irritability; sore throat; tiredness; weakness.

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); abnormal thoughts; dark urine; decreased coordination; extreme dizziness, drowsiness, tiredness, or weakness; fever, chills, or persistent sore throat; hallucinations; memory loss; muscle or neck pain; new or worsening mental, mood, or behavior changes (eg, aggression, agitation, anger, anxiety, apathy, depression, hostility, irritability, panic attacks, restlessness); new or worsening seizures; pain, itching, or redness at the injection site; red, swollen, blistered, or peeling skin; suicidal thoughts or attempts; unusual bruising or bleeding; vision changes; yellowing of the skin or eyes.


It’s enough to make a parent, uh, nervous.  Grassroots organizations like CURE, founded by David Axelrod’s wife Susan, advocate for more effective and safer treatments.

Christine noticed some changes in her son after he started taking the first medication, but it was impossible to determine if it was caused by seizures, the medication, or simply growing up.  As Christine and her family analyzed the patterns of her son’s seizures, she noticed a few things, one being that a couple of seizures occurred after he consumed sugary drinks.

She did more research and came across The Charlie Foundation, whose mission is to educate and facilitate investigations into the use of a special diet to cure pediatric epilepsy.  Unlike some of the fuzzy math of diet and cancer, there is a long history of successfully using ketogenic diets to control childhood epilepsy.  The dietary method was abandoned in the 1920s when drugs were developed and how often it isn’t mentioned to parents.  The Charlie Foundation is working to change that, to let parents know that there is another option.  There is a percentage of kids for whom medications simply do not work, and often increasing doses and numbers of medications results in debilitating side effects.  Diet is an option that has changed the outcome for many, and The Charlie Foundation wants to spread the word.  In fact, in September they are sponsoring an international symposium in Chicago on dietary therapy.

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Christine’s son has switched medications and made modest dietary changes.  His side effects have diminished as have his seizures.  He is doing well, growing up, and able actively participate in life.  In fact, he recently got together with some of his buddies and Dhani Jones, a former Cincinnati Bengal well-known for his philanthropy.  Jones started BowTie Cause.  Different styles of bow ties are designed and sold, each graphically linked with the mission of a non-profit organization.  Here is the background of the Bow Tie Cause.  (As an aside: watch the video.  It will rock your world.)

The bow ties are publicized, including on Fox Sports, and sold.  The money is designated for a specific organization.Behold the bow tie created by Christine’s son, Jack, and his friends.

The lightning bolts represent the electrical disruption in the brain that causes seizures.  The recipient charity is The Charlie Foundation.  This weekend, it was worn by Fox Sports’ Ken Rosenthal.
I am awed by the work of Jack and his friends — to take something that has been so scary and stressful and to make something good out of it.  Jack is the same age as my daughter, so I’ve shared this story with my children as a fabulous example of just how much a child can accomplish.  My daughter said, “WOW, how did he do that?”  My son, a couple years younger than Jack, told me that he looked for, and saw, the tie during the Yankees/Tigers game.
Much like breast cancer before my diagnosis, pediatric epilepsy never hit my radar until Jack was diagnosed and Christine shared some of their journey with me.  It’s a humbling reminder of all the things I don’t know, things that are just as life-altering as my breast cancer diagnosis was.
It’s a big world out there — people are dealing with all manner of issues in their lives.  And some of them are accomplishing great things despite and alongside these challenges.
(If you’d like to know how you can help, contact The Charlie Foundation or send me a message.  I can put you in touch with the right people.)

Product recommendation

I start off by saying that I was not asked to do this, not paid to do this, nor offered any freebies.  I found this all on my lonesome, just like a big girl.

^^not me^^

I’m on the eternal quest to find the right home for my prostheses for when I want to wear them.  For anyone who doesn’t know, I had a double mastectomy without reconstruction in 2009.

The medical equipment place gave me some mastectomy bras when I was originally fitted, but they are that rayon/shiny/yucky kind of bra that you might find in the 1940s, or maybe on your great-grandma.

Before the big casino entered my life, I was a sports bra kind of gal.  I’ve tried to slip my prostheses into sports bras, but they always seem to slip out.  That makes for a bad day.  And the mastectomy bras make my underarm sore.  I don’t have lymphedema, but I do have some scar tissue on the right side where they removed some axillary lymph nodes in 2008, and the band of those bras just seems to hit that tissue directly.  I can usually feel the soreness the next day.

In my online research, I read about the Genie Bras, which are not made for mastectomies but have a removable pad for the typical breasted women to wear if they so choose.  The cool part is that the opening for the padding is big enough to put the prostheses inside.

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At Target this weekend, they had them so I picked up four.  They came in boxes of two, at $19.99 per box.  As anyone who has priced specialty mastectomy clothes knows, that’s pretty affordable.  I am happy to report that they are as good as I’d hoped they’d be.  The material is indeed very soft and stretchy.  They feel a lot like sports bras.  I wore two different styles over the weekend and my scar tissue is behaving itself.

The only complaint would be that I was hot in it, and sweated underneath the bra on my chest.  I think that was more a function of the weather than anything as it is hot as Hades in the Midwest.  Thumbs up from Uneasy Pink!

What science can do**

A really interesting story about the only man cured of HIV was on NPR’s Morning Edition today.

Brown, 45, had two bone marrow transplants in Berlin in 2007 and 2008 to treat leukemia that is apparently unrelated to his HIV infection. The blood cells for the transplants came from a donor with a genetic mutation that makes his cells immune to HIV — they lack receptors the virus needs to gain entry to cells. Details about his case were published in the New England Journal of Medicine.

Cured!  (probably) – Source

There is some controversy about whether he still have virus cells in his system, as you can read in the article. But the common consensus is that this is amazing.  And now the questions arise: Even if he does have a few HIV cells floating around his blood, is he still cured?

The latest findings are sure to be debated among AIDS researchers and advocates. Their main significance is to show how tricky it will be to determine exactly what constitutes a cure, as researchers devise various tricks to cure AIDS with less drastic means than bone marrow transplants. The question is, when can they be reasonably sure a cure has occurred?

I understand that HIV/AIDS and cancer are very different diseases.  But look at the progress that has been made over several decades.  In 1983, the idea that we would be deciding whether someone was cured or not of AIDS, that we would be debating how few cells mean cure, was unthinkable.  Back then, virtually everyone who contracted AIDS died of it, and in about 9 months from diagnosis.  Now the average survival time after diagnosis is 24 years.

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What made the difference?

Antiretroviral medications.  They were a game-changing medical breakthrough.  HIV is a retrovirus, meaning it attaches to the host cell, then changes the DNA.  It changes these healthy cells making it difficult for the immune system to attack them and giving the virus longevity.  In 1983, scientists were able to identify this nature of HIV, the virus that causes AIDS.  In 1987, antiretrovirals were created, affecting the disease’s ability to change the DNA.  By 1996, death rates fell significantly.  Now it’s possible that a genetic mutation that leads to immunity has been discovered.

Successful ACT UP campaign

How did this all happen so quickly? 

We saw how devastating the disease was, even in mainstream movies like Philadelphia (1993).  And there was huge collective action to break the taboo and demand treatments, prevention education, and a cure, most commonly associated with ACT UP.  I encourage you to read that Wikipedia link.  What they accomplished is nothing short of astounding.

What can we learn from the history of the AIDS activism movement?  

I think that if ACT UP had never bridged the gap between “a gay disease” to “a scourge on humanity,” medical breakthroughs would have been delayed or lost entirely.

We’re missing something here.  We’ve failed to communicate the true cost of breast cancer.  We’ve failed to band together and demand change.  We’ve given over this disease to cultural stereotypes.  Our images of pink fun; our organizations that trivialize with words like “boobies” and “ta-tas;” our triumphant title of SURVIVOR… they’ve done us all a great disservice.  They’ve held us back.

** NOTE:  I don’t want to imply here that AIDS has been eliminated.  It’s a huge pandemic, fueled by stigma, lack of education, lack of healthcare access, and lack of global women’s rights.  My point is that we’ve proven that it CAN be done.