Need some info...a lot I assume...please... - 1247261

dkm5859 - Just to kick off: this new turn of events must be perplexing for you. However I think it's already been mentioned that the treatment of stage IIIA is a area where doctors sometimes differ in their approaches. Dr Pinder wrote a post about this:
http://cancergrace.org/lung/2010/08/22/introduction-to-locally-advanced….
I suspect the only people who can properly answer your main question (why are the UPenn team advocating a new strategy that includes surgery?) are the tumour board or multi-disciplinary team who have your mother's scans and history in front of them. It would be reasonable to ask if someone could explain how they came to their conclusion.
As to proton radiation, these threads are worth a look. The message, in a nutshell, is that proton radiation isn't significantly different from other kinds of radiation:
http://cancergrace.org/lung/topic/sterotactic-radio-surgery-vs-proton-t…
http://cancergrace.org/forums/index.php?topic=3526.msg20940#msg20940
Best wishes.

You asked a couple of days ago about the difference between getting treatment at one center vs another.
One very big difference in who or where something is done is thoracic surgery. It's very important that a thoracotomy is done by a dedicated thoracic surgeon not a general surgeon or even a cardiothoracic surgeon. I assume the board at UPenn was comprised of a dedicated thoracic surgeon who believes he/she can perform the surgery.
but like certain spring (thanks cs) the best people to decide on how to proceed with a stage 3a treatment plan are the people involoved. UPenn has a great reputation.

Good Luck,
Janine

Do you know why the thoractoomy was aborted? And I too would ask why UPenn thinks they can now do the surgery. I am stage IIIA adeno. Had one tumor each in both the upper and lower right lobes. I chose not to do surgery, as it would've involved two surgeries. I had stereotactic radiation then carbo/alimta and I'm NED. I finished tx 12/30/10 and just do my follow-ups. I also got a second opinion and they agreed with the first, so I can imagine why it's confusing you. You need to ask the hard questions that you want the answers to from those who have all your mother's info. Wishing you all the best.
Take care, Judy

As certain spring indicated, these are questions that are so unique that they need to be answered by the actual doctors involved.

There are no real comparative data that indicate that proton beam therapy is superior to other more readily available forms of radiation for lung cancer.

-Dr. West

I agree that it would be an excellent idea to repeat a chest CT or PET/CT (it's not likely an insurer would cover a repeat PET/CT until an interval of 60-90 days, but you're right at the 60 day interval since 6/28 now). Given that it's been two months since last imaging, there is unfortunately a real chance that the status of the cancer has changed. If it has progressed appreciably, surgery may not be appropriate now, even if it was potentially appropriate based on the status of the cancer on 6/28/12.

The treatment that would be indicated really depends on what is seen on the new scan. It may be that surgery isn't appropriate but potentially curative chemo/radiation would be. However, if there are new nodules that would represent advanced NSCLC, the most appropriate treatment would likely be systemic therapy, which unfortunately couldn't really be anticipated to be something done with curative intent.

-Dr. West

Here in the UK the maxiumum waiting time is supposed to be 30 days from referral to hospital for suspected cancer to treatment. I don't know the position in the US but I am sure others will be able to fill you in.
dkm5859, if you are torturing yourself about the length of time your mother has been waiting, please don't. There obviously have been some problems and doubts along the way, including the operation that didn't go to plan. None of that is your fault. Coping with cancer is all about holding one's nerve. Once you and your mother decide where she is going to be treated, and find a medical team you have confidence in, everything will fall into place.

I think it would be most typical for treatment to be initiated within about 4-6 weeks. We need to remember that the process typically involves seeing a primary doctor, getting an initial chest x-ray, then a chest CT, then referral to a pulmonologist or other doctor to evaluate, sometimes a course or two of antibiotics, sometimes repeat imaging, a biopsy procedure that can be nondiagnostic initially (that's not rare), then referral to the appropriate cancer docs (potentially med onc, rad onc, thoracic surgeon), often additional staging such as with a PET/CT and head imaging, back and forth discussion among the docs about the best option, and then sometimes the planning (such as a radiation simulation, or a mediastinoscopy before planned lung surgery) before initiating treatment. That's a lot of steps, and I think it tends to take longer when people are often on summer or Christmas holidays.

I agree with certain spring that when the situation is particularly complex, and that's often the case for stage III, there may be some tweaking of the plans in real time. Sometimes this really just can't be helped when the revision of plans is based on new information (life findings at a surgery).

-Dr. West

I'm sorry I don't think we can treally be helpful here. Your questions are extremely specific to her own situation, and much of what you're asking is about why people did what they did. I think it's really most appropriate to have the people directly involved address their own decisions, rather than to have someone who isn't part of that team and doesn't have all of the details try to speculate.

A PET/CT would likely only have a good chane of being approved if it has been at least 60, and maybe 90, days since the last one and if it would have a good chance of changing management.

-Dr. West

Yes, it's a very focal therapy, but it still makes no sense to give that to someone with multiple nodules. When there are multiple areas of cancer, you can cut out or radiate every spot you see, but new ones will appear because the cancer is present but not visible in far more places. There are perhaps some radiation facilities or practitioners who may be irrationally exuberant about giving radiation, including in settings in which it makes absolutely no sense at all, but they are either clouded by a painful lack of needed understanding of cancer biology (in which they are recommending it for people they should know won't benefit from it) or a financial motivation to give it to people who they truly know won't benefit benefit from it. See this link for a little more on your question:

http://cancergrace.org/cancer-101/2011/01/01/cancer-101-faq-i-have-meta…

The truth is that proton beam facilities are extremely expensive, and there are many institutions that have created them in an equipment arms race, but there are very, very few cancer settings in which proton beam radiation is truly known to be helpful -- so these institutions have a brand new $200 million hammer for which they need to find nails. There is no real evidence that there are situations in lung cancer in which proton beam therapy is appropriate but other forms of radiation are not, or where proton beam radiation is established as superior.

-Dr. West

Several of the newer radiation techniques can be directed focally enough to potentially be used for reirradiation of viable disease within a previously radiated field; while this can be done with proton beam therapy, that isn't the only technology that would potentially be employed in this setting.

As to the over-production of proton beam facilities, my strong sense of this is that radiation techniques and facilities are driven overwhelmingly by "market-driven" forces, rather than by "data-driven" demonstrations of a real incremental value of one technique over another. It's kind of like the compulsion of tens of millions of people to upgrade to a new iPhone the week it's introduced. If you were to ask, "what is this going to do that is astonishingly better than what I could do with the last 1-2 iPhone models or various hyped phones from other manufacturers?", you'd be hard pressed to generate a good answer. Proton beam has its zealots, but they're zealots, not able to actually point to great evidence of why someone actually needs that. And insurers are increasingly disinclined to cover treatments like this that are newer, pricier, but not demonstrably needed or better.

-Dr. West