Sorry for all of the questions. This one is pretty important, though. I'm finding out that getting my case transferred to Stanford may take over a month. Holy hell. I'm wondering if it would be better to stay with a local "comprehensive cancer center" instead of going to a real NCI CCC. The local cancer center can take me next week. I may have to wait a month at Stanford.

I know that going to a NCI CCC is the best bet, but I really don't think I should be waiting around another month. Any thoughts on this? Also, has anyone been to UCSF or Stanford for cancer treatment? Judging by the Yelp reviews, it seems like a mixed bag. Although, outcomes are probably the most important indicator of how good a center is.

I have not been to either one but what are your symptoms and history so far?

Just got diagnosed. Had a lymph node removed this past week, got the path report: SCC. I'm pretty much stage 4. I'm having my case transferred to Stanford. But, I'm also considering UCSF. I'm 39, I know I have oncogenic HPV, and I'm pretty sure the primary will be found there. Although, I will update once they find it--if they do.

Anyways, I'm just looking for anyone in California who has been to a NCI CCC here. So far, it doesn't seem like the CCC centers here are that great, like Sloan or MD Anderson. But, I guess I'm stuck here.

I think Brian Hill has been to MD Anderson from here. Has anyone else transferred their case there? If so, how expensive was it with insurance? I have decent insurance that pays 80% and up to $2000 max out of pocket deductible. I have read that deposits can range up to $40,000!! WOw. Any thoughts on that or experiences? I want to get the best treatment.

For insurance questions it may be a good idea to call your insurance company directly. There are so many plans out there and it isnt possible to compare what one person has vs another. Too many variables with things like that.

As far as where to get treated a CCC is the best place to go. If that is not possible for you then find the best medical care you are able to. A second opinion is also a good idea.

Best wishes!


PS.... Please take some time and review the private message (PM) I sent you. It is full of info to help you with navigating the forum and making a signature. The signature is very important in helping us to help you.

Hi,

I hear the anxiety in your voice that anything less than a CCC is compromising your outcome. There is a current debate here still about this topic.

Here are a couple thoughts which would offer you comfort for selecting a non-NCI CCC.

1) Only about 10% of cases are handled by NCI CCC facilities, meaning 90% of population "suffer and make do" at regional and local facilities.

2) Although the main CCC can attract and retain top talent, that does not mean that non-CCC only have second rate talent. My ENT-surgeon at John Muir completed his FELLOWSHIP at MSKCC (Memorial Slone Kettering Cancer Center), a highly prestigious center. It does not get better than that to have have someone who has shown significant passion, interest, and brains to have such an achievement.

3) CCC do tend to get and do much better at the very complex and unusual cases, as the regional-local facilities just do not get the volume of rarer conditions. In this case, referral to CCC makes sense.
The flip side of this is the CCC look for and take extra interest in these unusual cases. They offer new challenge and increased interest among the CCC staff.

How excited do you think they get treating a run of the mill non-complicated SCC with node mets? Do not be surprised to not be getting the top talent of the facility nor someone who is passionately involved in your symptoms and treatment. This may get a lot of reaction but the truth is these centers do lots of research and on the cutting edge of finding new therapies and pioneering and advancing the science. The fact is the unusual cases fulfill this more than run of the mill cases.

4) Although HPV+ SCC survival rates are still be computed, numbers north of 90% are often quoted. My own common sense tells me that if ever a study of our type of cancer is done, the difference would be a few points at most. Still, you want the very best outcomes but if you are at 92% and the other 10% is at 95%, I'd look in the mirror and smile. Life can be a hella worse.

No matter what keep a positive attitude, knowing in the grand scheme you are lucky to be where you are with this cancer diagnosis, and will surely continue to have a great life.

How do you know you have oncogenic HPV?

Hi, sorry for your diagnosis but glad you found us to help you through.

Call the # on the back of your insurance card as Christine suggests. Tell them you have cancer. You need to know your co-pay, deductible, co-insurance, annual and lifetime maximums. What preapprovals are required for radiation, chemo and surgery? Also ask if any cancer-specific services are available to you. Finally, ask how many 2nd opinions you can get -- mine had no limit.

If you have no limit on opinions, I urge you to keep your local appointment, go to Stanford, and also consider lining up a 3rd opinion at another top facility. There are some big controversies in how to treat oral cancer and it's common to find widely varying views among the top minds. There's no cookbook for treating HNC right now. If you only go one place, you'll only get one perspective and that may or may not be the treatment plan that gives you the most confidence.

Don't be swayed by personalities. Look for the docs that cancer fears, not the ones who give you the warm fuzzies. But also watch for organization, energy, communication among team members.

If you can only obtain one opinion, make it from an institution that:
1. Has a dedicated HNC team and treats a large volume of patients, AND
2. Is a teaching/academic institution.

CCCs are among the top institutions for both of the above and a number of large, academic non-CCCs are also leaders.

Lastly, handpick your docs. Use the hospital web sites to identify the surgeons/MOs/ROs. Dig up their CVs and scan their research interests to make sure they're dedicated to HNC, actively publishing and engaged in their fields. Be cautious if you are offered a doc who does no research, even at a CCC. As Don mentions, everyplace has its weaker links and that's just not good enough for cancer this nasty.

Good luck!

Mama

www.medscape.com


Head and Neck Cancers Increasingly Referred to Teaching Hospitals
Sep 09, 2013
By Will Boggs, MD

NEW YORK (Reuters Health) Sep 09 - An increasing proportion of head and neck cancers is being treated at teaching hospitals and academic centers - which may be good news for patients, and bad news for the hospitals.

"Higher volume centers end up doing more complex work," Dr. Eliot Abemayor from David Geffen School of Medicine at UCLA, Los Angeles, California told Reuters Health by email. "Since more specialized centers are doing this work, they cannot be held accountable to having poorer outcomes per se since the patients in general are the sickest and most complex."

The care of patients with head and neck cancer is labor intensive and expensive, and over the past decade, a greater number of patients seem to be receiving care at teaching hospitals and academic institutions than at local or community-based institutions.

In an effort to document this trend and its implications, Dr. Abemayor and Dr. Neil Bhattacharyya from Brigham and Women's Hospital in Boston used data from the Nationwide In-patient Sample for the calendar years 2000, 2005, and 2010, which included roughly 29,000, 33,500, and 37,500 inpatient hospital head and neck cancer stays, respectively.

This trend represents an increase of approximately 29% over the three study years, the researchers note.

These data demonstrated a significant increase in the proportion of stays for teaching hospitals, from 61.7% in 2005 to 79.8% in 2010 (p<0.001).

At the same time, the number of admissions to medium- bed-size hospitals for head and neck cancer inpatient stays decreased, although the overall change was not statistically significant.

Although a head and neck patient in 2005 was only 10% more likely to be admitted to a teaching hospital than in 2000, a patient in 2010 was 2.5 times more likely to be admitted to a teaching hospital than in 2000, the research team reported September 5 online in JAMA Otolaryngology Head and Neck Surgery.

Medicare or Medicaid covered more than half the patients in both 2000 and 2010, and there was no significant difference in payer mix between teaching and nonteaching hospitals.

"On the positive side, regionalization of head and neck cancer care to teaching institutions is likely to offer significant individual patient and societal benefit, although such benefits will need to be confirmed over time," the authors say. "The net result of such an increase in volume would be anticipated improved quality and outcomes."

Because most head and neck cancers will be performed at academic centers (and few elsewhere), goals and objectives of residency training as they pertain to head and neck surgical oncology may need to be revamped, Dr. Abemayor said. Earlier subspecialization may be one approach.

"Irrespective of payer distribution," the authors conclude, "such intrinsically more expensive care must be part of the discussion between hospitals, health care providers, and payers when bundled payments are made if the fiscal viability of academic institutions is to be maintained."

JAMA Otolaryngol Head Neck Surg 2013.


Reuters Health Information � 2013


Cite this article: Head and Neck Cancers Increasingly Referred to Teaching Hospitals. Medscape. Sep 09, 2013.

UCSF has one of the most respected H&N centers in the country.

And you can't use my MDACC choice as a guide, I private paid a large portion of my own treatments. I couldn't do that these days, but back then it was a choice I had.

Hi Mama,

I think we are all in agreement that if you have the ability and opportunity and time and knowledge to obtain services at a CCC, that is a solid bet. Most get hit blindsided they have cancer and very limited time to absorb and ask all the right questions and make the right decisions when things are a blur and spinning.

I'd bet less than 50% even know the meaning of CCC on the day they start the first treatment.

Again, most are going to get care locally/regionally.

Let me share a very recent experience with having to face obtaining medical insurance coverage today. For the first 5 decades of my life I did not worry two shats about insurance as I rarely needed any service. Kids did of course so choosing the best for them was the priority. We never hit any out of pocket caps.

2013 and Don gets cancer. Fortunately, our prior coverage was good enough and shouldered the vast brunt of the financial costs.

Due to job change we need to select new medical policy. Well, reading those corp insurance packets had a level of interest never experienced before.

The lens of a consumer with a chronic disease alters the calculus of estimating total annual costs out of pocket for care.

Nothing new to say that in-network coverage is far more cost effective. It is simply luck of the draw if a disease you may contract in the future is covered in-network at a top NIH rated facility specializing in that disease.

The policy options place punishingly high caps and out of pocket expenses which are quite onerous for those of modest means. If you stay in network you still have to pay a fair amount until you hit the out of pocket max limits. Some policy options do not even have out-of-network options so you are limited to in-network providers.

We ended up choosing Kaiser as offering the best overall quality of care and the great value proposition with the most affordable limits on out of pocket expenses. I did not even pursue asking if Kaiser allows additional opinions and referrals to specialist facilities like CCC if case is rare or complex. There was no point as the other policy options has excessive out of pocket annual caps which put excessive strain on our family budget.

Long story to just highlight CCC are great but in today's realities off tightening covered medical services and ever increasing costs moving to consumers of services, it just seems clear paths to CCC are less achievable going forward.

Brian - the brief you posted is great but it refers to "inpatient" patients. I did get some service at the hospital but never admitted for any procedures. Is the term's opposite out-patient? If so, then most HNC treatments are done on an outpatient basis. For more complex cases, maybe patients are directed in-patient for services. Just not sure if that article applies to the majority who are treated on an outpatient basis.

don