Paul, I can't thank you enough for posting that Journal of Oncology editorial. It really lays the groundwork for getting smarter about choosing institutions. Don nailed it, this is usually a choice given less time and energy than picking a new car.

From the article:
"NCI designation is not synonymous with high quality cancer care for every cancer. The NCI designation and the CCSG grant are awarded for support of research activities; the NCI review process is not designed to assess the quality of care. "

Brian, thank you for your thoughts and info (and for this wonderful forum!). The question isn't whether small community hospitals are as good. It's whether large academic non-CCC hospitals are as good in some cases. In my state, the 560-bed CCC has the same equipment as our local 500-bed non-CCC teaching hospital, both are offering the same HNC clinical trials, and the HNC teams have the same number of docs and a comparable prominence in HNC research.

Within the US News ratings, some non-CCCs are rated higher than CCCs for cancer. As Don asks, when are the differences between institutions negligible? Since the ratings aren't specific to HNC, what other info should people consider?

I'm suggesting that making the best choice entails looking at multiple criteria, especially the qualifications of individual HNC doctors..

It's a good article but it is also more than a decade old, and our healthcare system and institutions do evolve� however that does not negate some of the good points in it. Please note that the team approach, and tumor board approach, no matter where you are, is important. In my previous post I didn't say go to a CCC, I laid out a list of things that I thought were good decision making points, and a third party source to vet your choices against, that lists many good institutions that are not CCC's.

Lastly I would like to observe that we have had numerous people come here that were being seen by a single doctor, usually a surgeon, and not working with a multidisciplinary team, which I think is a less than desirable idea. I would like to have people evaluate me for the existence and extent my disease, and decide what treatments are best for me, as a group drawn from different training and experience backgrounds. The old adage that if all you have is a hammer, everything looks like a nail comes to mind. Radiation, chemo, surgery etc. should all be part of the decision making team.

Bottom line you have to be comfortable with your doctors, wherever they are. And financial/insurance issue will play into choices, but if at all possible, do not let geography be your prime mover in deciding where to go. It's your life at stake, not something you are going to have a second chance at making this decision about.

I thought you would pick up on the date, Brian. I often check too, and did, and weigh it from there, and like you said, some info is stil applicable, others evolve. My newest doctor, a radiation oncologist, specializing in HNC, wrote the book, "Head and Neck Cancer, a multidisplinary approach." He chastised me for going all over NYC to be treated lol. He said you have to be treated at one place!

Part of the problem, I think, has to do with the evolution of the term "CCC" as used on these boards.

When I first joined seven years ago, new members were encouraged to seek at least a second opinion, if not treatment, at a comprehensive cancer center (CCC), meaning an institution where each case would be considered by a dedicated team of multidisciplinary specialists working together to determine recommendations for treatment -- a "comprehensive" approach, as it were, rather than the patient having to find an ENT surgeon, an MO and an RO (along with ancillary personnel if needed) on his or her own and hope that (a) they knew something about head and neck cancer and (b) they would talk with one another. (Mamacita, from the way you describe it, I'll bet that your 500-bed "non-CCC" teaching hospital actually is a comprehensive cancer center, using this definition.)

Over the years, the emphasis here has switched to getting to an "NCI-designated CCC" -- which is a very specific term that has nothing to do with patient care or a team approach to treatment and everything to do with an institution's research interests. Granted, NCI designation can open the door for patients to a wider variety of clinical trials and make more research funding available. And in general, academic institutions, like the NCI-designated centers, attract top-notch clinicians.

But in NCI-speak, designation as a "comprehensive cancer center" means that the facility has made it through a rigorous years-long process that examines the quality and scope of its research in three specific areas (an NCI-designated "cancer center" focuses its research in one or two of those areas). Remember, too, that institutions choose to apply for NCI designation; some places may think it involves too much time, bother and expense and don't even start the process. For example, my first comment on this topic, back in 2007, was on a thread wondering why Stanford wasn't on the NCI list (though it is now). Friends of a good friend of mine traveled from the Middle East to be seen by the HNC team at Beth Israel in New York City, which is highly regarded for HNC and isn't an NCI-designated facility.

It's certainly easy (I'm not blameless here) to simply post the link to the NCI-designated CCCs/CCs and say "You should go here," since the odds are overwhelming that any facility on the list -- with the obvious exception of those that do research only and don't treat patients -- will approach each case in a "comprehensive" (as explained in the second paragraph) manner and that its head/neck cancer department will see far more cases than the average community hospital. Perhaps what we should be doing is encouraging new patients or members of their families to use that list (or the list of facilities that comprise the National Comprehensive Cancer Network, which actually does relate to patient care and devises the annually updated state-of-the-art treatment protocols) as a starting point for their research, and not necessarily as a final destination, and to make sure that wherever they are treated, their case will be considered by a team of specialists with experience in HNC.

[quote]Lastly I would like to observe that we have had numerous people come here that were being seen by a single doctor, usually a surgeon, and not working with a multidisciplinary team, which I think is a less than desirable idea.[/quote]FIRSTLY, this is the point I'd drive home first. And that team approaches and configurations and multidisciplinary can be found beyond the walls of CCCs.

CCC likely have fully integrated records and patient care IT systems, enabling information flow between practitioners and patients smoother and seamless whereas docs not in CCC likely have non-integrated systems which require more manual flow of information.

Going to a single doctor, even if he were world renowned would be shortsighted to me. HNC is a complex disease in a complicated part of the body and requires expertise from multiple disciplines.

My own experience outside a formal CCC felt as effective. The ENT was part of hospital group A, MO was part of hospital group B, RO was part of cancer institute of hosptial group C, yet they are all formally and contractually bound together and convene tumor board on a standing basis much as a CCC.

One could argue that having even greater diversity of viewpoints and expertise and experience and possibly freer of politics could offer as good, maybe even better, more objective recommendations.

My RO is listed individually in the latest US News ratings and the facility he is part of. The ENT did his fellowship in HNC at Memorial Sloane Kettering, hard to find better credentials. My MO was very passionate and made very sound and supportable recommendations which the tumor board backed up. He was very egoless and more than willing to go back to tumor board open to getting more experienced minds to review different options. (We did go just the one time, which I did attend, another plus).

A quasi CCC team does require more personal oversight and sheparding due to the lack of integrated practice systems but as long as you stay on top of it, it was no big deal; very much like the back end of medicine has been forever.

One comment on CCC, more specifically academic associated CCC, not mentioned much before is that as teaching institutes I find there is far more turnover in doctors as they come and go. I experienced this with my son who received audiology services at a teaching institute and the lack of continuity was less than comforting.

Well, I think we have covered every possible angle of this, and there were some good ideas exchanged. In the end this decision unfortunately has a huge financial consideration in it that many do not have control over. I think we have given future visitors to the forum a lot to think about when they make this important decision.

Brian,

Let's say both all sides of the topic have been fully exposed and others following the blow by blow account has sufficient information to trigger their own thinking and direction on where and how to get the best care they can given their circumstances.

We all can agree that the best option is to seek the best care one can acquire given their own constraints.

Thanks for your patience in following and contributing your wisdom to the discussion; it surely makes for a better quality and richer perspective. don

Beaten to death at it's best! Tho thoroughly enjoyed the read. : )

Hi Mamacita,
I am in a similar situation; however, I still have the tonsil tumor and metastasis to 2 R lymph nodes (HPV+). No surgery. I am still waiting for the call to start the treatment of cisplatin (3x) and rads (6.5 weeks). This is the standard treatment from all I have read and from what my MO & RO say. Hopefully no "salvage" surgery afterwards on my lymph nodes. ENT oncologist told me about 25% will need this surgery after Chemo-radiation treatment.

Since you have had surgery, it seems that you should not need to get the same full blast of radiation? Did your post operative contrast CT show something of concern? I would ask your RO about possibly reducing the treatment intensity or at least reassess during treatment. Plus is the chemo really necessary if the radiation is just a cautionary post surgery treatment. Just my opinion.

The CCC group should be using an Intensity Modulated Radiation Therapy (IMRT) device which will reduce most of the harmful effects of radiation on healthy tissue. If the nearby teaching hospital also uses IMRT you may want to see if that is possible instead of driving 4 hours.
Helical tomography IMRT is the best of the current IMRTs.

Take care Mamcita,
Steve

Hi there Steve! I'd hoped for reduced radiation and no chemotherapy, but several docs I consulted (though not all) think I'm high-risk for recurrence. One tumor margin was <1mm, which some consider a positive margin even though technically defined as negative. Also had a retropharangeal node, which is linked to recurrences that are particularly deadly. The real surprise for me was hearing that smoking is still a risk factor even though I quit over 25 years ago. There's research linking ANY 10-year pack history to a poorer prognosis. I think it doesn't get much play because it could discourage people from quitting -- it really counters the common thought that your smoking related risks reset to zero a few decades after quitting.

So in a sense, the surgery isn't being factored into my treatment plan at all -- I'm being treated as having active disease.

I appreciate the info on the latest IMRT. My local hospital will be using IMRT on me, will ask if it's helical.

Curious that they started you on an early round of Cetuximab -- how does that fit in? Are you going nuts waiting for the call to start? I was dreading treatment, I'm still afraid but now feel relieved to finally be starting.

<<<HUGS>>>

Mama