Long Term Small Cell Extensive 5-18+ years

[lc46]

Article from the Journal of Oncology on long term survival with Small Cell. It's dated 1995 but still show's long term survivors. http://jco.ascopubs.org/cgi/content/abstract/13/5/1215

[Guest hearrean]

Very interesting article...It amazes me however that an article such as that can start out stating the good news, but has to end on a bad note. (Notice the very last sentence). To me, this shows the bias out there with many in the medical community over this disease. It was true then & is definately still true today. Very few of the medical professionals seem to want to admit or commit to the fact that a cure is possible & definately happens!

It wouldn't surprise me to learn that when many folks are first diagnosed with this disease, they go onto the web to learn, read the stats & then, because of those, just simply give up! (I stop slight of calling that involuntary manslaugther by the medical community). Their stats should take that into consideration! I know that could have happened to me had I not found this site which has given me encouragement.

Sorry to rant, but I just pray that soon in the near future our medical professionals attitudes will change and biases will be removed.

Ken

[Starr13]

But, did you read the entire article, or just the abstract? I paid the $22 and downloaded the full article some time ago. It gives the same statistic as every other study for sclc extensive long term survival (ten years+), around 1.2% or so.

Of course, these studies are very old, but, if you think about it, they HAVE to be old in order to be able to track survivors who live that long.

Still, this article and others like it (you can find several by searching through pubmed.gov) are very encouraging because they at least indicate that the number isn't ZERO. And, it's very, very encouraging to see that there are people with mets to liver, brain, bones, etc., who do go on to live many more years, and often with a quality of life similar to what they had before diagnosis.

As to the perceived negativity of the medical community, I thought that way too, as recently as a month ago. But the more I talked to various oncologists, and examined their direct patient experiences, etc. the more I realized that they can really only view the world through their personal lens: what have they actually seen and observed in their practice experience, and what has happened with their patients. If you think about it, with a long term survival rate of around 1-point-something percent, most oncologists are not going to have a lot of long terms survivors of sclc extensive in their practices, and, I would even venture to speculate that very possibly the BETTER, more prestigious doctors, and the highly ranked national cancer centers are going to be the most pessimistic of all, because it seems logical that perhaps they would see the most desperate and hopeless of cases. The long term survivors that I have spoken personally with were treated by local, unknown, unpublished oncologists in smaller or even remote U.S. cities. To a person they have no clue why they survived and others don't, except that perhaps they were very involved in their own care, and they also had a high degree of confidence in their medical teams. So I no longer fault the doctors for being so negative, because they are viewing it all through the lens of their direct experience.

It does seem from what I can tell - the long term survivors of this that I have spoken to personally - every single one of them was treated by a very aggressive doctor who pushed the envelope. These are sclc extensive with mets to brain, liver, etc. Only one of them that I have spoken to personally had just simply conventional standard of care treatment, and, she was sclc limited, not extensive.

[ztweb]

Yes! This is what we need to hear!