terrified for friend, how do you go on?

I agree with Leah...second opinion for sure!  When I was first diagnosed, and not sure what stage yet, my doctor told me even the worst case scenario has hope, so don't assume if you are stage IV that all is lost.  I am not stage IV, but she would not have said it, if she didn't believe it, and she has been practicing for twenty three years.  I will keep your friend in my prayers.  Take Care and try and keep your head up.

Are you saying she has mets to her brain (i.e., MRI and headaches).  That could be where they're getting the stats.  But brain mets (and others) can be beaten back.  I've been at it for over 3 years -- (brain for only 6 months).  If your friend does have brain mets, here's a great site to find out more info:  http://brainmetsbc.org/  It is encouraging.

There is an essay in the June 1, 2010 issue of Journal of Clinical Oncology with the discomforting title, "Certain Death in Uncertain Time:  Informing Hope by Quantifying a Best Case Scenario."

The essay describes the difficulty our oncologists have in being realistic about a cancer patient's prognosis, while at the same time allowing the patient to maintain a sense of hope rather than futility.

The essay is too long to reproduce completely, but I'll copy some excerpts and provide links for those of you who have library privileges:  

http://www.ncbi.nlm.nih.gov/pubmed/20406926

http://jco.ascopubs.org/cgi/content/full/28/16/2802

Here are some excerpts from the essay.  I apologize for the medical jargon, but that's the way the author expressed herself.  She was writing this to other oncologists, not to patients like us:

++++++++++begin quote+++++++++++++++

"Research informs us that the majority of patients with metastatic cancer desire information about their likely survival duration. The literature also recommends that prognostic information be communicated to those who request it in a manner that is meaningful and realistic, but maintains hope. Knowing these general principles is different than applying them in practice, and when confronted by versions of "how long have I got?" we struggle to find suitable answers. Although patients, caregivers, and health care professionals have identified hope as an integral part of prognostic discussions, the key practical questions of how to define, quantify, and convey realistic hope remain unanswered. …

"… [Doctors] need to believe hope exists before we can convey it. But how do oncologists find hope? A potential source of hope stems from our experiences with patients who manage to defy the odds and become long-term survivors. Such experiences can help us envision, and therefore convey, hope. … [The author uses Teddy Kennedy as an example, and cites some text from his memoirs.  I've omitted that part.] ...

"Long-term survivors provide oncologists with hope, and telling stories of long-term survivors with similar cancers is an obvious way of conveying hope when discussing life expectancy. However, this hope needs to be tempered by the realization that few achieve such long survival times. Long-term survivors are outliers, and the more extreme their experience, the greater the doubt that they represent a realistic example. Quantifying and explaining the best case scenario representing the best 10% of patients is preferable to describing an individual long-term survivor, and is more realistic. …

"As Stephen Gould published 3 years after reading that his median survival with abdominal mesothelioma was 8 months, 'the median isn't the message.' He argued that median survival can be both misleading and discouraging and believed few people have sufficient understanding of statistics to evaluate what the term median really means. He noted that most people would read such a statement as 'I will probably be dead in 8 months.' Explaining that a median survival of 8 months means that 50% of patients will live longer than 8 months, and encouraging patients to review aspects of their personal situation that move them into the better 50% is a way of using the median to convey hope. …

"Patients understandably want hope and optimism from their doctors. A previous Art of Oncology article described a patient who requested that her oncologist 'be more optimistic' about her prognosis. The oncologist's optimism was necessary for the patient to maintain hope. Achieving the correct balance between conveying hope and being realistic is where the difficulty arises. We need to be honest without being blunt. We need to foster realistic hope without creating false expectations of longevity that might lead to wasted time and futile treatments that impair quality of life. Discussing the best case, worst case, and typical scenarios is a simple method that appropriately balances hope with realism. …

"Setting optimistic and achievable goals is also an important means of conveying and sustaining hope for patients with incurable cancer. There is more to life than its length, and we sometimes forget this as we focus our attention on survival times.

"Providing a range of prognostic estimates, including outcomes that are more likely, and outcomes that are less likely, but still possible, allows patients to both maintain hope for the best and plan for the worst. We hypothesize that efforts to convey hope, suitably balanced by realism, will leave fewer patients feeling defeated after discussion of their prognosis. A patient's expectations of their survival must also be considered. It is when these expectations exceed reality that an estimate of survival becomes bad news. …

"Life is inherently uncertain and unpredictable, with or without cancer. We cannot tell patients how long they will live, but we can do much better than giving them a single number. Improving the accuracy of our predictions is important, but conveying the limitations and uncertainty of these predictions is even more important, not in the least because it offers a means of quantifying and conveying realistic hope and understanding."

+++++++++++++++end quote+++++++++++

I think the distilled version of this is that our oncos often give us a number that represents the "median survival time," and we misinterpret that number as the longest we might live.  What we need to realize (and what they should be telling us) is that 50% of patients will live longer than the median (while 50% will not live that long).  Also, as was noted in the essay, "there is more to life than its length."

Hugs...

otter