The Good Cancer

Here is a post I wrote in response to a spirited discussion in a CLL forum on the topic of how we patients are informed about our diagnosis and the unnecessary anguish called by sometimes well meaning but poorly informed and of touch physicians. As is everything in CLL, it's complicated and clear and sensitive doctor- patient communication is the starting point for a good outcome.

Friends,

CLL is too often still called the "good cancer" and all of us CLL patients rightfully hate that.

No cancer is good. But perhaps the problem is more with the word cancer than the word good.

We are pleased when our doctors tell us that we have the "good" prognostic factors, knowing full well that guarantees nothing about our future.

We are happy to see a "good" lab result,  knowing full well that it might change tomorrow.

Cancer is such a loaded and malevolent word that the idea of putting something positive in front of it carries a similar horror and disbelief that would accompany  anyone uttering a phrase such as: it was only a "gentle" abuse or a "polite" hijacking. There are worse oxymorons, but I'll skip them.

Doctors want a short hand to say we have good news and bad news. There is never an excuse for poor doctor-patient communication, but we all know it is often going to be a short communication.

Many patients don't know what indolent means until well after they have been diagnosed, and to say slow growing, many patients might only hear the "growing" part especially when it is qualified with the adverb, "usually".

Let's get some perspective.

CLL is not an imminent death sentence, especially now. A significant chunk of us will never need treatment and even more of die with the disease, not from it. Nearly all of have some real time to rub our chins, plan our lives, and consider our options before any therapy is needed. And if and when treatment is eventually needed, today we have a load of non-chemo therapies available and the floodgates of less toxic choices are just starting to open. 

Maybe the cancer isn't good, but all of this is good. Very good!

Ask most patients with pancreatic cancer or MDS  or glioblastoma multiforme or metastatic ovarian cancer if they would want to trade their cancer for ours. Ask any doctor which bad news he prefer to share with his patient. It is easier to say someone has a bad cancer than a good one.

Moreover, doctors want their patients to have realistic expectations, good or bad. There are documented tragic cases of elderly patients committing suicide when they found out they had CLL because they thought it was quick death sentence. It is incumbent on any health care worker to offer comfort always and hope where hope is a real possibility.

Finding the balance is so hard.

I am trying to think here as both a doctor and as a patient. What do you think if you heard this as a starting point from your doctor?

"You have CLL, a chronic form of a blood cancer. (Pause…) While all cancer is bad, some are much worse that others. Now I want you to listen carefully to what I am about to say. (Another pause...)  While no-one knows the future, CLL is most often, not always, but most often, one of the least aggressive kinds of leukemia".

That takes longer than saying you have the "good cancer" but not too much longer. And there are a millions other ways it could be said better. And that is just the beginning of a much longer discussion to come. 

Tough stuff. Whole books on medical ethics and patient communication are written on this topic.

These and similar and usually much easier issues are what I struggled with everyday as a doctor turned patient.

Stay strong

We are in this together.

Brian

Other blogs about transplants

I wrote this answer to a patient on ACOR or Association of Cancer Online Resources to her questions about other's experience with transplants and CLL with the bad prognostic marker of 17p del.

It sobered and depressed me to have to divulge so much bad news. I believe it is better to know. Not every one agrees,

Hi La Verne

A HSCT is narrow road, but sometimes it's the best road and sometimes it's the only road, but it is always a narrow and difficult road.

Have you contacted BMT-TALK@LISTSERV.ACOR.ORG? That's a start.

Here are some blogs:

Mine is bkoffman.blogspot.com ( not 17p but 11q CLL). I am here and doing OK 3 years post a rejected HSCT.

Wanda Zimmer is still in first 100 days with 17p del CLL at http://m.caringbridge.org/visit/wandazimmer

Chonette Taylor and Dennis Bayer have done pretty well, but they don't have a blog that I know.

And Susan's with CML http://www.caringbridge.org/visit/susanleigh is many years out, not without challenges, but living a big full life.

Another friend has done super well with both CLL and MDS post transplant: http://www.carepages.com/carepages/MyTransplantForCLLandMDS/updates/3020524?client_code=mdanderson&ipc=mur

Paul's story is helpful and pretty calm, but with some recent bad news: http://www.caringbridge.org/visit/paulplunkett

IF YOU DON'T WANT ANY REAL BAD NEWS, STOP HERE.

Robert was good friend with 17p who died suddenly post transplant: http://www.caringbridge.org/visit/robertpassananti

So did PC VENKAT, a hero of mine. He was also 11q del like me. See http://www.journal.clltopics.org/ Tough stuff

Prepare for a wild CLL/ transplant ride with Greg: http://www.caringbridge.org/visit/maddog23 He's a great writer too.

Another whom I know is Aaron who has had a tough time: http://www.caringbridge.org/visit/aaronstransplantjournal

My friend Ron didn't make it. http://www.caringbridge.org/visit/rongottula

My memory is distorted. As a doctor, I am often guided by the worst cases, as they are the ones you must learn from to best avoid repeating the dangerous moves.

I am sure that I have forgotten other voices that have guided and comforted me by sharing their trials and trails. Please forgive me.

I am so sorry to have included so many tragic stories. I personally know or knew many of these brave souls, and yet I still chose to do a HSCT and will likely do a second one. 50% or 60% odds of being alive in 10 years are way better than 0-10% if you are 17P del. Then again, statistics never predict for an individual but only for a group

Still despite all this bad news, actually odds are in your favor, but it is never easy. It is alway complicated and tough to decide and tougher to do.

Stay strong

We are all in this together. Let me know if I can help- if I haven't too scared or depressed you too much.

Brian

Letter to a friend at the beginning of February, 2009

I wrote this before I had any recent results. It is minimally edited to protect the recipient's identity.

Captures a moment in time. Seems like prehistoric time.

Here goes:

Dear Friend,

Seems my pattern is to wait too long to write you in the hopes of sending mail filled with only great news.

No such luck. I have both good and bad results.

Truth be told, my life remains full of hairpin turns, made in the fog, on icy roads, while listening to Leonard Cohen. But I am still on the road.

Let me catch you up.

As you may recall, the hematopoietic stem cell (bone marrow) transplant went off without a hitch on Canada Day, July 1, 2008. Unbelievably, only three weeks later I was sent home. No transfusions. No IV feedings. Except for a few storms of nausea and vomiting, bone deep fatigue, and the loss of my hair, it was scary how easy it was.

Turns out too easy. My dysfunctional “host” immune system that nearly killed me a few times in 2007-2008, somehow managed, despite the onslaught of big time chemo, to fight on well enough to “protect“ me from what was to be my life saving foreign graft. It turns out that with all my vegan ways and meditation and weight training, I was too damn healthy, and rejected the bloody stem cell transplant that was meant to cure me.

Which means I will likely have to do the whole tortuous process again. This time with a bigger hammer (read stronger chemo, read more time crawling on the floor and hugging the toilet). Without a newly installed immune system, the risk of relapse is very high.

Or maybe not. The great news is that on my last tests, I was 100% cancer free. Occasionally those who reject the transplant, also reject the cancer. Like throwing out the baby with the bathwater. I may be cured and just not know it.

A CT scan and bone marrow biopsy later this month will determine if I am heading for the redo, or back to work.

My “host” immunity may have thwarted my plans for a peaceful transition of power with the goal of my new donor’s cells taking up residence in my executive branch and running the show, but it is not yet strong enough for me to return to the world of sick people that was my workplace as a family doctor. I am hoping to return to the office after the flu season if I get my doctors' OK.

In the meantime, to fill my time with meaning, I have been writing. My blog http://bkoffman.blogspot.com has had about 55,000 hits and Purdue University has proposed a study using my site. My readers have encouraged me to make a book from what I have learned and written about. It feels right.

The book will be a narrative non-fiction with the working title: The Difficult Patient.The subtitle for now is: How a Contrarian Attitude Saved My Life and Might Save Yours.

It is an anti-inspirational comic tale about how to demand and get a recut and reshuffle if you don’t like the hand you’ve been dealt. It celebrates brokenness and chides forbearance.

For me writing is demanding. I know dry science writing, but this is a entering a whole new world. In a universe full of agents and publishers, I am arming myself for the upcoming battles. Fighting for one’s art is nice work compared to fighting for one’s life.

Patty and I have not traveled much due to my health, but I am going to NYC in March to lecture, maybe meet some agents, and get some expert opinions on what to do next about my cancer and my book. My mask came off in November.

In April, I am scheduled to do stand up comedy to introduce the keynote speaker at an International Leukemia/Lymphoma Conference in Niagara Falls, Canada.

My son, Will, the artist, is back from four months in Italy and is busy with his fine art and illustration. My son, Ben, is showing his latest film about the orbiting Spitzer infra-red telescope at a local film festival, my daughter, Heather in NYC is writing the bar, and my oldest daughter and son-law, Rachael and Nick, who you met, are traveling around the world on a scholarship studying the architecture of American military bases and how they effect the surrounding communities. Very sweet. They’re in Hawaii this week.

I will send you a shorter note when I get my CT and biopsy results and map out my next move.

Be well. Stay in touch.

 

Brian