Monday, August 29, 2011

Getting the right doctor can save your life

This proves what I have been saying for years. You need a CLL specialist heading up your team. Odds are you will live years longer.

This is probably less true in common diseases such as diabetes or breast cancer where most providers have many such patients.

But this is sure true for CLL/SLL.

Thank you ACS and thank you my friends at Mayo. The research may be seen by some as self serving, but it is hard to argue with the numbers.

Hematologist/oncologist disease‐specific expertise and survival: Lessons from chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL)


Tait D. Shanafelt, Neil E. Kay, Kari G. Rabe, David J. Inwards, Clive S. Zent, Jose F. Leis, Susan M. Schwager, Carrie A. Thompson, Deborah A. Bowen, Thomas E. Witzig, Susan L. Slager, Timothy G. Call



The impact of physicians' disease‐specific expertise on patient outcome is unknown. Although previous studies suggest a survival advantage for cancer patients cared for at high‐volume centers, these observations may simply reflect referral bias or better access to advanced technologies, clinical trials, and multidisciplinary support at large centers.


We evaluated time to first treatment (TTFT) and overall survival (OS) of patients with newly diagnosed chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL) at a single academic center based on whether they were cared for by a hematologist/oncologist who subspecializes in CLL (CLL hematologist) or a hematologist/oncologist with expertise in other areas (non‐CLL hematologist).


Among 1309 newly diagnosed patients with CLL cared for between 1999 and 2009, 773(59%) were cared for by CLL hematologists and 536 were cared for by non‐CLL hematologists. Among early‐stage patients (Rai 0‐I), median TTFT (9.2 vs 6.1 years; P < .001) and OS (10.5 years vs 8.8 years; P < .001) were longer for patients cared for by CLL hematologists. For all patients, OS was superior for patients cared for by CLL hematologists (10.5 years vs 8.4 years;P = .001). Physician's disease‐specific expertise remained an independent predictor of OS after adjusting for age, sex, stage, and lymphocyte count at diagnosis. Patients seen by a CLL hematologist were also more likely to participate in clinical trials (48% vs 16%; P < .001).


Physician disease‐specific expertise appears to influence outcome in patients with CLL. To the greatest extent possible, patients should be cared for by a hematologist/oncologist expert in the care of their specific malignancy. When not possible, practice guidelines developed by disease‐specific experts should be followed. Cancer 2011. © 2011 American Cancer Society.



Blogger Jenn said...

Wow! That's about a 25% survival advantage, and these were hematologists. Imagine how much worse it would have been for general oncs.
I picked my local hem/onc because he's one of the smartest guys I've ever met and he's also thrilled to share me with a specialist.
Very interesting.

August 30, 2011 at 9:29 AM  
Anonymous Anonymous said...

Can you explain - TTFT is 9.2 yrs median and OS is 10.5 yrs median. Which appears to say that the median survival time after first treatment is 1.3 yrs. Clearly, that cannot be right!. Someone treated for the first time after 9 years generally has a few years at least! I'd appreciate some light shed on this.

Thanks, Heléne

August 30, 2011 at 7:10 PM  
Anonymous Anonymous said...

The numbers leave me perplexed and perhaps your doctor's view can help. If the median TTFT is 9.2 years and median OS is 10.5 years, it would seem the average time from treatment to death is 1.3 years. Clearly, this is not correct, as once someone who has gone 9 years without treatment is treated, they could usually, barring a very bad (and unusual) situation, expect, several years more. Probably a "median" of 3-7 years, from first treatment to the end. How do you account for the short interval btwn 9.2 ys TTFT and 10.5 yrs OS?

Thanks, Heléne

August 31, 2011 at 5:16 PM  
Anonymous Anonymous said...

One of the authors is my hem/onc and I speak with experience when I tell you he is not up to date on vaccines: flu, pneumonia etc. Instead, he relies on in-house infectious disease docs which also are not fully up to date. That is why I bounced the issue of flu vaccine dose off you. I find exchanges with people with similar problems to be more fruitful than with one's doctors. Not seeking medical advise as you thought just your ideas, experiences etc.
Just so you know, my situation is doubly complicated because I am a CLL patient and a care giver to my wife who has multiple myeloma: lucky us having 2 B-cell cancers. Thus, I have two souls I am trying to protect and any feedback is welcomed.

August 31, 2011 at 7:17 PM  
Anonymous Anonymous said...

Why do we have to call breast cancer a common disease? My Mother died 31 years ago of this dreaded disease, at age 50. I'm now 60 and 4 years ago I was dx. with it and just last month my second sister was dx. My two remaining sisters are wondering who's next. I know you are asking, "are we BRACA 1 & 2 positive?" The answer is no. We have been tested at City Of Hope. When is our country going to do something about this. ENOUGH IS ENOUGH.

September 1, 2011 at 4:40 PM  
Blogger Brian Koffman said...

Many were disturbed by the minimal 1.3 year different between TTFT and OS.
Good questions!
This is the way I understand it.
You are conflating the statistics. The average TTFT was 9.2 so some went 6 months and some went 10 years.
Same kind of numbers with the OS. Some patient probably died in the first year and many are still alive. Could be that one was treated at 6 months died at a year and another treated at 2 years is still alive. And some may have died before any treatment.
In other words, the mean OS is 10. 5, the mean TTFT is 9.2, but that does not not tell us how long the average persons survives after first treatment. They are not tightly linked. You can die with no treatment. Another factor that is really driving the finding is that at 10 years out, the majority of patients were both still untreated and alive in the expert group (but not in the non-expert group). It is those patients that are are contributing big time to the statistics.
Does that help? It is a bit more complicated. The article is worth getting to read to get the details. Read it and tell me what you conclude.
Be well

September 3, 2011 at 3:15 AM  
Anonymous Anonymous said...

I'd be dead by now (or wish I were) had I accepted Clive Zent's invitation at the Mayo Clinic in 2005 to join his Campath and Rituxan study. See Chaya's views regarding the outcome of the study.

Following my declining to participate in the study I describe above, Dr. Zent's formal recommendation to my GP was of PCR then subsequent BMT, and was just as lame. See CLL Diary dated Sept. 1, 2011 by David Arenson.

While I agree that "Getting the right doctor can save your life," Dr. Koffman, you are wrong about the CLL specialist.

September 3, 2011 at 5:13 AM  
Anonymous Anonymous said...

Hi from Oz, Brian! Still reading your blog. Alison.

September 7, 2011 at 9:31 PM  

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