restaging??

[hopeful?]

I have noticed several comments mentioning restaging. I am stage IV; several nodules in both lungs and lymph node involvement. Currently being treated with Chemo only.Is it possible for me to be restaged and become a surgical or radiation candidate if all dissappear except the primary?

[Connie B]

You can go from I to IV ,but once your a IV you can't go backwards. I'm a stage IIIB, and I am cancer free for 12 years via, surgery, chemo and radiation treatments. My stage never chaged. HOWEVER, still could become a Stage IV. Just can't go backwards. (Unless the doctor's goofed on staging you) and to be honest with you I have seen that happen a few times over 12 years to people. Stuff Happenes!

[recce101]

This staging thing is an inexact science at best, and all Stage IV folks are NOT equal, not by a long shot. A number of our own Stage IV and IIIB members are doing very well, better than some who carry the label Stage I or II or IIIA. In the case of Stage IV or IIIB, cancer cells are either known or assumed to have traveled beyond the lung area, so systemic treatment (chemo) is needed and lung surgery or radiation with curative intent is usually not in the cards. Current technology cannot accurately determine if chemo has killed all of those wandering cells, some of which may start to grow somewhere else even after a successful lung surgery.

From what I've seen, NSCLC staging is useful mainly towards the beginning, sort of like triage after a major accident, and provides guidelines on what initial treatments are most appropriate (and likely to be covered by private insurance or Medicare). After a while, treatment becomes more individualized. It takes into account the patient's response to previous treatments, and "stage" becomes less of an indication of how "sick" a person may be. I tend to think of my stage in the past tense -- that I was diagnosed IIIB in September 2006, but that's not as important as how I'm doing right now and my treatment plans down the road.

Aloha,

Ned

[RandyW]

now there is a prposal to rethink and redo the whole "Staging" system or program also. THis has been proposed to be done over the next 12 months in order to allow more surgical candidates than there are right now.

The new guidelines, which will overhaul a decades-old staging method, are expected to be adopted within the next year. Among the changes expected: creating more sub-stages for tumor size, reassigning some large tumors to a more advanced stage, reclassifying tumors that have spread into the fluid surrounding the lung, and recognizing that spread of cancer to certain lymph nodes is more dangerous than its spread to others.

[DrWest]

It is true that you can't be "downstaged" after presenting with stage IV disease, but also true that there's a lot of variability in how people do with that. The new staging system will separate stage IV into a group (IVa)now recognized to have better prognosis, with disease limited to the chest (pleural effusion with cancer, other nodules within the lung or involving the pleural lining around the lung), versus a stage IVb population that have more distant disease outside of the chest, recognized to have not as favorable a typical prognosis. However, there's plenty of variability within those groups. Some people with quite advanced disease happen to have a more indolent cancer and/or quite responsive to treatment and can do quite well for years.

We're often tempted to do surgery or radiation on a single spot of active cancer if there's no evidence of any other other disease elsewhere. I've done that with a few patients, but unfortunately the cancer has almost always recurred within a few months in other places. So while I'd never say never, as a rule it's quite unlikely that stage IV NSCLC can be effectively treated with local therapy like surgery or radiation to improve survival.

-Dr. West

[blaze100]

Hi Hopeful, Many of us have had "spots" pop up on one scan and then disappear again 6 months later. Does this mean our stage changes for awhile, then goes back when the spots disappear?

Honestly, I don't even know my stage for sure anymore and that's the way I want to keep it. I think the docs use staging to guide the treatment options, that's all.

We should not be thinking about our own survival in terms of staging. Only God knows how our lives will end. Everyday we are alive is a reason for hope. Barb