Im stuck. How do you really choose where to go for treatment? Im speaking of CCC's (a term Ive learned here in 1 day- thanks!). We're obviously thinking of the most well known; houston, baltimore, new york and here in NC we have DUKE (DCCC). Distance isnt an issue however if we chose out of state we'd like somewhere that offered reasonable lodging expenses. I really dont know how we'd afford to visit her in NY. If we go to Duke, it's only an hour away.
I feel like the place we choose will decide her future. What if we pick to stay in NC and she doesnt make it?
Then we will feel like maybe it would have worked had we gone somewhere else.
I know these things probably run through everyones head but I just don't know how to rationalize this. Mom is okay with going to Duke. I just want to feel GOOD about going there too - not because it's convenient
As a reference, we are now dealing with her 4 recurrence of SCC in 2 years
This is the only REAL choice that you are going to get in things, picking your treatment team/facility. There is no question, and there are even published articles on this in peer reviewed journals, that people treated at teaching hospitals, CCC's, have not only different, but sometimes better choices, and subsequent outcomes.
One of the many things that is screwed up with our healthcare system in the US, is that not all institutions offer the same standard of care. There is no doubt that community hospitals offer a different standard of care than CCC's. There are even differences in CCC's, based on philosophy of treatment. Without mentioning names, In the Chicago area, one CCC will give you the NCCN guideline chemo and radiation with surgery for salvage, and the other one goes right for the knife as the first choice. This is a fact. Given all these disparities, God help you if you are on an HMO system that won't pay if you go outside your local system, and you don't live next to a world class place. If you don't have insurance or are poor.... a completely different set of choices, and subsequent outcomes.
Your dilemma is worse than most people fully appreciate, as they are of the belief that care from doctors and institutions around our country is equal. It is far from it. That doesn't mean that lay people do not fall in love with a particular doctor at a small institution and swear by him. But just to put this in perspective, only 30% of the hospitals with cancer facility in the US have IMRT radiation available. IMRT is the best current mechanism for delivering radiation, since it is capable of sparing anatomy that is not cancer involved via its programming, though there is no proof that it eliminates cancer any better than any other delivery means. If you don't know that, if you don't know to ask, you are making a choice that may not be the best. This is the real tragedy of care in the US, that there are huge disparities. If you are a for profit community hospital that does not get federal funds for anything, than your standard of care is whatever you decide that it is. This is reality.
I am not stating this to disparage good doctors in community hospitals or small institutions. But there is just an obvious difference between working with someone that has not only seen your problem 50 times a month instead of 50 times a year, and has also dealt with the inevitable complications that arise multiple times and is not unfamiliar with all of them, or unsupported by a large team of others that are part of the decision making in both initial treatment decisions and complication resolution. It is just the nature of the system, and within it we are supposed to make the best decisions, as LAY PEOPLE that we can. Most do not even realize that there is a difference. Most cannot afford to go outside their coverage area to a world class institution. It is what it is. 7 presidents have recognized that the system is not the best it can be in many ways, and 7 presidents have failed to be able to break the hold of the vested interests that keep it the way that it is. Do not think that Obama Care, for all the effort that went into this, fixed it all. It only opened the dialog for a short time. The vested interests still have control, and the average patient is still getting very different grades of care based on things which many of them have no control over. It sucks.
The rule of thumb is second opinions are always a good thing, and in my personal opinion that second opinion should come from a teaching institution. In all this, remember that time is not your friend and if you are going to get multiple opinions for an advance stage disease, time is of the essence.
Each one of us makes the best decisions we can with the information at our disposal, and the insurance and financial capacities and assets that we have.
Emily,
If I am understanding you correctly, you are trying to decide if your Mom should seek treatment locally at DUKE, or elsewhere.
DUKE is ranked 9th in the nation for cancer treatment and it is a NCI designated CCC. Duke is an elite top tier facility.
http://health.usnews.com/best-hospitals/rankings/cancerNevertheless, a second opinion elsewhere (such a (#1)MD Anderson, (#2)MSKCC, (#3)Johns Hopkins) is always a good idea particularly since your Mom is dealing with a recurrence.
Brian - everything you say is so true. And I do not trust that any one doctor has the right answer. To me, it's almost like a game of luck. Who will guess what the right course of action is correct for my Moms particular case and get it right? Its like russian roulette.
Anyway, the previous place we went for radiation does offer IMRT. They also have a Gamma Knife and Cyber Knife. TO be honest with you, Im not sure which she received. At the time, you just trust what theyre doing to her. To me it was just "radiation". I didnt know there was more to it. I guess I should ask and find out what kind of radiation she received.
Don, yes Duke is ranked in the top 10. But it's not the top three. Thats why I wonder if it's my best choice. Nevertheless, I am calling Duke today to make an appointment. Hopefully we can get in within a week
Emily ...as far as lodging goes..check the American Cancer Society. Many of the CCC's have a Hope Lodge that offers a suite at no charge while you are undergoing treatment..no income parameters are considered. I think their biggest requirement is that there is a caregiver residing with the patient. The one we toured at Moffitt Cancer Center in Tampa, Fl was extremely nice.
Just a thought,
Deb
i contacted duke CCC today - they immediately agreed she needed to go to the tumor board. all i have to do is gather her records. waiting to hear back when our appointment is. theyre tryingn to get us in by THIS thursday