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Alert Number 156

CLL, the "Chronic Condition"?

Date: March 22, 2006

If any cancer can be called a "chronic condition", it may well be CLL, the so-called "good cancer" to have. And that admittedly annoying cliché is true, if you compare the average survival rates of CLL patients against people with more aggressive cancers such as pancreatic cancer, lung cancer, liver cancer etc. Our fuse is quite a bit longer!

Some day, and not in the distant future, I am fully confident that we will find a way of truly making CLL a chronic condition, something that can be treated with medicines and life style changes, akin to high blood pressure or diabetes. That is not quite the same as a "cure", but it is close enough for government work! The article below from Medscape underlines some of the issues you need to think about as you contemplate surviving CLL.

There is no free lunch here. Just as in serious and life threatening diseases such as diabetes and chronic heart disease, success depends a great deal on active participation of the patient in learning more about his/her individual condition, learning enough to make smart therapy choices, and making sincere efforts at life-style modification to back up medical intervention. Type A personalities want action, want it now, and want it with the least fuss and bother to themselves. As one patient put it to me, he is busy 24/7 being a cancer patient and he does not have time to bother learning about it! That does not work for CLL, in my opinion, and unfortunately that patient is no longer with us. You have the best chance of living a long and good quality life if you are prepared to learn and be an informed participant in your own healthcare. If you cannot be bothered, why would it matter as much to any one else?

Even in the past few years a lot has changed in the “Best Practices” of how to care for CLL patients. The conventional thinking of the last decade short changes us. Truly, what you and your oncologist do not know can kill you. Here are a few links to get you started on the path of being an informed consumer:

What You and Your Oncologist Need to Know;
Conventional Wisdom;
Are We There Yet?;
Winning the Battle but Losing the War;
Journey of a Newly Diagnosed CLL Patient.

Be well,

Chaya
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Abstract

Webcast Video Editorials

Cancer Survivorship: The New Chronic Condition

Harvey V. Fineberg, MD, PhD

Medscape General Medicine. 2006;8(1):66. © 2006 Medscape

Medscape Article (Requires free registration)

Posted 03/13/2006

Half of all men and one third of all women will develop cancer in their lifetimes. As of 2002, there were more than 10 million people in the United States living as cancer survivors.[1] Despite these numbers, primary care physicians and other healthcare providers often are not familiar enough with the consequences of cancer, and seldom receive explicit guidance from oncologists.

The lack of clear evidence for what constitutes best practices in caring for patients with a history of cancer contributes to wide variation in care. The Institute of Medicine report called "From Cancer Patient to Cancer Survivor: Lost in Transition" cites shortfalls in the care currently provided to the country's cancer survivors.

The report recommends that each cancer patient receive a "survivorship care plan." This plan summarizes information critical to the individual's long-term care, such as the cancer diagnosis, treatment, and potential consequences; the timing and content of follow-up visits; tips on cancer prevention and on maintaining a healthy lifestyle; legal rights affecting employment and insurance; and the availability of psychological and support services.

Besides being at risk for recurrence of cancer and for developing new cancers, survivors may face psychological distress, sexual dysfunction, infertility, impaired organ function, cosmetic changes, and limitations in mobility and cognition. All of these deserve attention.

Advances in the detection and treatment of cancer, combined with an aging population, mean greater numbers of cancer survivors in the near future: As this number increases, it is essential that oncologists, primary care doctors, nurses, social workers, psychologists, and others who are involved in survivors' care begin to recognize cancer survivorship as a distinct phase of cancer care.

Cancer survivorship should be treated for the long term, and innovative models can provide the survivor with coordinated, effective, ongoing care.

That's my opinion. I'm Dr. Harvey Fineberg, President of the Institute of Medicine.

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References

1. Institute of Medicine. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: National Academies Press; 2006:23. Available at: http://www.iom.edu/CMS/28312/4931/30869.aspx Accessed March 2, 2006.

Harvey V. Fineberg, MD, PhD, President, Institute of Medicine, Washington, DC.

Disclosure: Harvey V. Fineberg, MD, PhD, has disclosed no relevant financial relationships.

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