When Sportswriters Cover the Cancer Beat: The Uneven Reporting of the Bob McNair CLL (chronic lymphocytic leukemia) and Skin Cancer Story

The owners of the NFL team, the Texans, Bob McNair has come out and shared his successful battle with CLL and a very aggressive squamous cell (skin) cancer.  The newspapers in Texas were full of the good news, but they didn't quite get the CLL piece right.

Please take a look at this news report:

Texans owner McNair gets clean bill of health after cancer fight

Or check out:

Texans owner McNair healthy after 10-month cancer battle

where you will read:

"McNair's remarkable recovery has included ground-breaking experimental treatment for chronic lymphocytic leukemia (CLL)…"

I want some of whatever that is.

Here is my published comment in response to the article:

Good news. While Mr. McNair's skin cancer may be curable, not so with his blood cancer, CLL. At least not yet, however, it is often controllable with therapy. Since CLL weakens the immunity, it can make skin cancers more aggressive. The message here is that anyone with CLL and many other cancers needs to be particularly careful about their sun exposure and vigilant in checking their skin for any suspicious lesions. Sadly one cancer, especially CLL, can lead to another.

Turns out a few of the sportswriters got a bit scrambled in their understanding of the management of his slow moving CLL versus his aggressive skin cancer that spread well beyond the skin requiring extensive and repeated surgeries, radiation, chemotherapy and eventually skin grafting.

The press conference with Dr. Michael Keating out of MDACC (MD Anderson Cancer Center) tells a clearer story with the full transcript at this link. Dr. Keating has a long and broad view of what we CLL patients need and I am glad he is a leader on our Team CLL. I also love the way he can generated much needed publicity about our cancer that seems to spend most of its life in the shadows, avoiding the bright lights and headlines.

The ground-breaking experimental treatment mentioned in the report was pheresis or more commonly called apheresis and its experimental use is to increase our wimpy immune response and lower our high risk of secondary cancers and their reoccurrence. 

Dr. Keating explains it at the press conference:

"You’re all aware that there’s an increased instance of melanoma that occurs because of tanning beds and things like this, but the most common forms of skin cancers are Basil Cell cancer and Squamous Cell cancer and many people like Mr. McNair have more frequent visits to their dermatologists than to the other members of their families sometimes because they keep on coming back. So the one element of Chronic Lymphocytic Leukemia or CLL, which is the most common leukemia that we see in the western world, is that there is a complex suppression of the immune system and the only non-AFDA approved activity was part of an extension of a protocol where we could take immune cells out by a process called apheresis, where you go through a machine and you take white cells out and separate the immune cells and then stimulate them up a thousand fold so they go to one-hundred-million to one-hundred-billion and give them back and rebuild the immune system to try and prevent these events from occurring."

Looks as if the transcribers may have missed a few key words and phrases.

A few reflections on what we can learn from the news.

1: Another celebrity, Bob McNair, the owner of a proud NFL team, tells the world he has CLL and skin cancer. Of course I wish he had shared the CLL news earlier, perhaps even at the time of diagnosis in order to help remove the cancer stigma and demonstrate how well he continued to live his active life for many years post diagnosis. I recognize that sharing a cancer diagnosis is a complex and very personal decision. Still I wish he had told the world when he was in the battle and not after it was at least partially over, but still I am grateful for his thoughtful and generous comments to the media about his two cancers and the treatment. I have posted extensively on this subject and received many lively comments on the decision to share the news or shut up. This link will get get you started if you wanted to revisit that topic.

2: We CLL patients are all at heightened risks for skin cancers and even the usually well behaved ones can become very nasty with our suppressed immunity. We get more cancer and the cancers we get are more aggressive. We need to use our sunscreen and our hats and have a full body skin check (and that really means full body) at least once or twice a year. See this prior post on secondary cancer risk with CLL (and CT scans).

3: MDACC and others are working hard on ways to improve our immunity. We need that. Dr. Wierda talked about his immune boosting research last year in this post. Remember that it is secondary cancer and infections that kill the majority of us that arise as a result of our weakened immunity from the disease itself and its old school chemo treatments. No point of knocking the CLL back and then dying of a secondary problem.

4: Sportswriters should stick to covering sports. Or if not, get some help and fact checking. Many otherwise fine reporters when covering cancer go for the feel good story. I guess they get tired of writing about the bad news and dirty laundry the rest of the time. That's nice, but it is not the whole picture. I promise I won't write on sports (except maybe a little about my beloved LA Kings and ice hockey) if they won't write on CLL. You don't need a medical degree to be a good medical reporter, but it sure helps. If not, then please do your research or ask for help and please tell the whole story, the good and bad.

More Comments on to Tell or Not to Tell About Our CLL

Here are three comments that tell a very different story about the risk of sharing the CLL news.

Would that the world was different. My hearts especially goes out to the first anonymous commentator, who ironically is not so anonymous at church and home. He speaks poignantly of the cruelty of friends and family and the kindness of strangers.

Strong arguments for keeping our mouth shut, when possible.

For the origins of this discussion, please see my recent post on the death of George Duke,  the follow-up post with a related comment and my much earlier post on the CLL death of Jill Clayburgh.

The comments speak for themselves.

Anonymous said...

I can't relate to what you are saying and the experience of others you have described.
I told everyone I knew about CLL, people I trusted and loved. In doing so, over time, my friends and close family deserted me, my church didn't understand and wasn't able to relate how ill I was nor provide me with the support I needed, eventually I left that church.
You see for me CLL, in combination with another chronic illness, made me very ill, so ill I couldn't work anymore and I lost my job, lost my career, my friends started to distance themselves and so did my close family, it was as though I were leper.
Now it is rare for any of those to phone to ask how I am, none offers to help; none visits; only my wife supports me. I use to be always the one who would keep in touch and phone and see friends and family, but now when I am in greatest need all I get is silence. Old friends busy themselves with self interest activities, I use to ask them to meet me for a tea or coffee but they always had some excuse not to meet, same goes for close family, I haven't seen my brother and sister for many years even though both are capable of visiting they choose not to. So I've given up hoping anything from them anymore. Even the medical profession has been woefully poor in providing support, so often I (and my wife) have been left to fend for ourselves.
Only now my life is close to the end does anyone seem to care, and those who do have been strangers, and at last this has got my sisters attention and she shows some concern and occasionally phones but alas it's usually a case of her saying something like "keep me posted etc.", same old habits same old complacency.
The strangers are people on CLL forums, people in palliative care, people who can relate to illness, suffering and ultimately have known people who have died. They provide words of comfort, they put an arm around you and hold you as you cry, they make you a cup of tea and offer you food, they help you walk and support you as you struggle to walk or stand. These are the real angels in this world, these are the people with love and compassion in their hearts, and these are the people who share your pain and suffering.
Yes, there really are good Samaritans in this world, however there are others who choose to look the other way and walk by on the other side, but the ones who have love and compassion in their hearts are angels in this world.

AUGUST 10, 2013 AT 7:12 AM 

(Another) Anonymous said...

The problem often lies in what you must reveal due to medical appointments. I went through a clinical trial and never missed a day of work except for days when I had infusions. I elected to tell a very small number of people who were in my direct line of reporting so they would understand my need to specify firm dates out of the office. Unfortunately a couple of those people chose to tell others out of "sympathy." Within a few days, I was inundated with cancer doe eyes, the sorrowful misty look one gives when talking about Old Yeller. Needless to say I was irate over my supervisors revealing a personal medical matter. Cancer puts you in the lineup of those due to checkout next. You are denied opportunities, treated as a lesser entity and suffocated by the premature sad news of your demise. I managed to set things straight by doing my job at a high level of productivity, much to the dismay and even annoyance of my family. But you can't show fatigue or you are out of the game. Some people started talking about my retirement, something I neither wanted nor could afford due to health insurance issues. We all have different circumstances and needs, but I would opt for silence.

AUGUST 8, 2013 AT 6:23 PM

 justme said...

Couldn't agree more with (another) Anonymous writer, especially this: "Within a few days, I was inundated with cancer doe eyes, the sorrowful misty look one gives when talking about Old Yeller ... Cancer puts you in the lineup of those due to checkout next. You are denied opportunities, treated as a lesser entity and suffocated by the premature sad news of your demise."
I'm not so concerned about keeping or moving up in my job as to seeing the pitying eyes, etc... Since I'm mutated and haven't had treatment since diagnosis in 1/06, I would most likely have to deal the cancer label for quite some time.
Only my family (including extended) and one close friend know I have CLL.

AUGUST 11, 2013 AT 6:33 AM

CLL: More on to Tell or Not to Tell

The following personal note on whether to share our cancer diagnosis or keeps the battles secret was send by one astute and candid commentator in response to my recent post about George Duke.

This anonymous well written and considered comment deserves to be seen by more than those few readers who always check out the many thoughtful comments from my readers and fellow travelers.

I can so relate to the writer's experience of the pitying looks and the pre-terminal planning that a cancer diagnosis seems to foster.

Here is the comment:

The problem often lies in what you must reveal due to medical appointments. I went through a clinical trial and never missed a day of work except for days when I had infusions. I elected to tell a very small number of people who were in my direct line of reporting so they would understand my need to specify firm dates out of the office. Unfortunately a couple of those people chose to tell others out of "sympathy." Within a few days, I was inundated with cancer doe eyes, the sorrowful misty look one gives when talking about Old Yeller. Needless to say I was irate over my supervisors revealing a personal medical matter. Cancer puts you in the lineup of those due to checkout next. You are denied opportunities, treated as a lesser entity and suffocated by the premature sad news of your demise. I managed to set things straight by doing my job at a high level of productivity, much to the dismay and even annoyance of my family. But you can't show fatigue or you are out of the game. Some people started talking about my retirement, something I neither wanted nor could afford due to health insurance issues. We all have different circumstances and needs, but I would opt for silence.

Thank you to the anonymous writer.

You might also want to read my almost forgotten post from nearly three years ago written when Jill Clayburgh died of her CLL keeping her secret to the very end. So much has changed in those three years, but when I reread my thoughts from back in November 2010, I was pleased to see that I can still relate to what I wrote back then in what was a very different world for those of us with CLL.

George Duke Dies of CLL and None of his Fans Knew of the Battle until his Obituary

"Jazz, funk and soul keyboard maestro George Duke (pictured) passed away at the age of 67. The musician reportedly battled chronic lymphocytic leukemia, according to his record label, Concord Music Group." says a score of press releases.

I am  sadden by the loss of this great musician at a relatively young age, and I send my condolences to his friends and his family.

This is the first I heard that he had CLL. I totally respect his decision not to share his struggles.


"He was battling and being treated for chronic lymphocytic leukemia (CLL)." is the only clue we have. 

Was his end a complication of his treatment?  The press release hints at that. Or maybe not.


I wonder what therapies he accessed? Was a clinical trial part of his path? Did he try any of the new small molecules or mAbs? Was he cared for by a CLL expert? 

We will never know.

When I hear, again  and again of a TV or music or movie star who dies of CLL, I really do respect and understand their decision to hide their disease from their fans, and often I am sure from most of their colleagues. Might lose work if someone knew that you had cancer and the entertainment and many other business are very competitive and very phobic about any illness.  And besides, it's about the art, not the cancer.

Many hide CLL simply because they can. 

Most therapies are outpatient. Surgery is almost never indicated (maybe a rare lymph node biopsy or a splenectomy for intractable AIHA or  ITP). We don't generally lose our hair or drastically drop our weight or even look much like a cancer patient is "supposed to look."

It is easy to hide CLL to very near the end.

And it is going to get easier and easier with the new oral drugs in the pipelines. 

CLL as a non-event!

We are not quite there yet, but it may be becoming less and less of a visible and burdensome disease.

Easy to hide and getting easier.

But is it a good idea?

Several positives. 

Hiding our CLL focuses our lives and our relationships on topics other than our cancer. 

It forces us to compete in work and play without playing the "cancer card" for sympathy and a leg up.

We spare family and friends worry and concern that is often needless, especially if we have very indolent disease.

Those are all good things.

Several negatives. 

We miss the support and knowledge of others who might be able to help us and whom we might help by sharing out experience. It's a give and take that only comes from sharing our truths.

We don't expand the general awareness in the community of the gravity of the disease, the need for more research (and funding) for the  promising new and improved treatments, and despite our best efforts, the human toll  of our killer. We are competing for scare resources with much more visible and active cancer advocacy organizations. 

We deny family and friends a chance to support and care for us.

We deny a part (but not nearly the whole) of who we are, when we don't share the raw truth of our illness.

Those are all bad things.

For each of us, we must decide whether to come out of the CLL closet. 

Just as in treatment, there is no one size fits all in the world of CLL.

I understand and respect George's decision to play his cards close to the chest.

I have chosen to play mine in the public eye.