Hi, I have a few questions for folks who had radiation/chemo at a distant CCC:

-- Did the distance to the CCC make it harder to access support care during treatment and in the months following? (speech therapy, swallow therapy, PEG, followup scans, etc.)

-- How did you handle medical emergencies (i.e., PEG issue at midnight Saturday)?

-- Did you have any problems w/pain med prescriptions that can't be faxed/mailed/phoned in under controlled substance laws?

-- Any other considerations?

Our nearest CCC is a 4-hour round trip. I went there for trans-oral robotic surgery and every facet of the care was outstanding. I'm wondering, though, if long-distance care at a CCC would truly be better for the radiation phase of my treatment.

I live 5 minutes from a major teaching hospital that has a team specializing in head and neck cancer. For all I know it could qualify as a CCC, if CCCs were still being endowed. I'm trying to figure out if the CCC "brand" really carries enough genuine advantage to justify the burden commuting for care would put on me and the friends and family who are going to get us through this.

Your thoughts?

Hi Mamacita,

I sought treatment at Johns Hopkins in Baltimore. It was a 4 hour round trip from our home. We were fortunate to be put up at Hope Lodge in Baltimore. There are many close to major CCC's. Also, most CCC's have arrangements with lodging facilities that offer discounted rates to patients.

Concerning your questions....

-- Did the distance to the CCC make it harder to access support care during treatment and in the months following? (speech therapy, swallow therapy, PEG, followup scans, etc.)

Since were at Hope Lodge, we were only a mile or so from the hospital during treatment. We went home on the weekends. The 4 hour round trip is small potatoes for the level of care I received. It hasn't been an issue. I rarely have to wait for a call back or an email if I have questions or concerns. They offered recommendations for PT and SLP closer to home as well if I needed it.

-- How did you handle medical emergencies (i.e., PEG issue at midnight Saturday)?

I had such an emergency as 10 days after my 2nd surgery a tonsil bed blew out and I was bleeding rather badly. I went to my local ER and after they contacted my team at Johns Hopkins I was transported by ambulance to their ER. I was fortunate that the bleeding wasn't a "gusher". I still lost well over a pint of blood! They were waiting for my arrival at JH and I had emergency surgery to stop the bleeding. Had I needed an IV or minor issues, I'm confident the local hospital would have been able to handle it.

-- Did you have any problems w/pain med prescriptions that can't be faxed/mailed/phoned in under controlled substance laws?

None whatsoever.

-- Any other considerations?

I just responded to another post concerning Johns Hopkins and the treatment I received there. I started out locally and I'm convinced, had I decided to seek treatment there, I wouldn't be here writing. The treatment I received from the first call on has been second to none. This is your life and if a little distance is all that's in the way between saving it, the decision is clear. A CCC is more likely to have the latest equipment and options than a local hospital has. I'm not saying you cannot receive excellent care at a non CCC but I'd rather be seen at a place that lives and breathes cancer treatment on a daily basis.

Positive thoughts and prayers

"T"

Here is the list of the country's top cancer treatment facilities. This list includes both CCCs and cancer centers (CCs) who are approved by the NCI.

List of CCCs

It really does matter where a patient is treated. Studies have been done on this and the patients who are treated at CCCs have a better survival rate. At CCC's you will find the brightest and most experienced physicians who treat hundreds of OC patients per year. Smaller facilities may only see a handful of cases per year so the doctors do not treat many OC patients so they see alot less of all the side effects and everything else that goes along with it. Plus the CCCs use a team based approach which benefits the patient tremendously as everyone is on the same page. Bottom line, its your decision to make about where to get treated. You want to get the very best medical team you are able to, your life depends on it.

We at the Oral Cancer Foundation can help you with many things including help with your PEG in the middle of the night. There are places next door to many of these facilities where they have rooms for free or very nominal cost ($5 or $10 a night) to cover meals. Some airlines will even fly patients for free when traveling for treatment. I can give you these links if you need them.

Good luck!!!!

Thanks so much, Christine & T, I really appreciate your input.

Christine, can you please post links to the studies you mentioned?

I agree completely that it matters where the patient's treated. That's exactly why I'm agonizing over this decision. My local hospital does use a team approach and has a team dedicated exclusively to head and neck cancer. I don't know how many cases they manage, but it's a large teaching hospital serving an area with a population of about 1.8 million. Our CCC is in an area with a population of about 500,000.

Our CCC doesn't have a Hope Lodge. Things are complicated by the fact that I'm a single-parent of an 8-year-old and want to minimize disruption to her life to the extent that I can.

Hi Mamacita,

A young child certainly complicates things. No matter how you look at it, cancer is disruptive to one's life in many ways. There is no "easy" part about it. Being a single parent raises the question: Do you have a caregiver/support system in place? If not, start putting that together. There were times I couldn't drive to Baltimore and relied on friends to help (Marcia doesn't drive). There were also times I was so sick I could barely fend for myself. We had a list of names, numbers, emails etc. that we kept handy for such a time. There were several occasions that if it weren't for them, I don't know what we would have done.

I remember initially thinking I would get treatment locally and continue to work. Little did I know!..... I probably could have worked for about the first 2 weeks but I hit the wall hard the third week and was useless until about 4 weeks post treatment anyway. I worried about financial aspects as I'm one of the 99% living paycheck to paycheck. I was very fortunate and blessed that I have a group of friends and fans (I'm a well known local musician) that threw a benefit for me that helped with our living expenses while I underwent treatment. I also did a fundraiser at www.giveforward.com and used social media to advertise and that helped a lot as well.

Here's a list of hospital rankings based on cancer as their specialty.

US News Rankings

At the very least, get a 2nd opinion. Most will tell you that attitude is more than half the battle. Having confidence in your team is vital. Whatever you decide, base it on confidence in the team that's treating you. Research the doctors as well as the facility. I had a rather negative experience at the local hospital which prompted me to go to Hopkins. I had a friend who was treated there for lung cancer and didn't make it. That and the fact that another friend was treated at Hopkins for BOT SCC and was practically screaming at me to go there! It turned out I had the same RO and ENT/Surgeon that he did. He's close to 2 years NED now.

Positive thoughts and prayers

"T"

Here is the link that will take you to the article about CCC's having better results with OC patients. there may be some other articles out there too but this is the one I have found on the OCF newsfeed.

Where You are Treated Matters


Where treated info

Hi Mamacita,

From your signature it appears you are well into your treatment plan, having TOR and ND surgery. Most all the discussions around CCC and other facility/doctor selection is usually sorted pre-treatment. I am not in the medical profession but I think once you select a boat and it set sails, changing mid-voyage is generally not done.

There are those who change doctors and facilities but it seems these changes occur at logical breaks and when a new symptom or condition is starting up. I could be all wrong on this so wait for those who have lots more experience and mileage. don

I agree with don. I was wondering about the same thing. if you have already begun your treatment plan, its not easy to switch midstream. Most doctors dont like to come into the middle of a patients treatment and "take over".

Best wishes!

I had started the ball rolling locally with the first tonsillectomy and biopsies. I had separate consultations with the MO and the RO and had the mask made and fitted. They even tattooed a dot on my stomach for lining up the radiation machine. Then the BS started happening. I was told that treatment would start in about a week. After two weeks I started calling and asking questions. I even drove to the hospital and asked in person. There was no communication between the doctors. Where was the scheduling? I got blank stares and shoulder shrugs when asking questions.

The head of Oncology called as he had heard I was a little upset by what was going on and we spoke at length. He said he would check things out and call back. I never got a call back! I even left him a voice mail the next day! I finally spoke with the oncology nurse and she said, pertaining to the head of Oncology.... and I quote "Ohhh, he doesn't always know what's going on around here." REALLY??!!

My treatment plan was to do 35 radiation treatments with concurrent chemo and evaluate for surgery afterwards.

I called and asked the patient advocate why they didn't have a team approach and she said, and I quote..."When you're done treatment, fill out the questionnaire and suggest that"... WHAT??!!

Needless to say I was taken back by the Three Stooges approach. That and the fact that the hospital had a terrible track record (according to US News and other reviews) of survival had me running!

When I had my meeting at Johns Hopkins, they reviewed the treatment plan. We also discussed my singing voice etc. My RO had the plan in his hand and all of them agreed. Had I proceeded with the plan laid out locally, I stood a very good chance of permanent and irreversible damage to my voice. I asked the local RO the same question and he said I'd be fine. He lied!

My experience may be unusual but that's what happened. The team at Hopkins felt it was better to remove the cancer and do further biopsies to locate the primary (unfortunately they were unable to do so). The logic was if they could remove 99% of the cancer (which had grown substantially in the 6 weeks after Dx), then it would mean less treatment. As it turned out, it was a wise move as my cancer was aggressive and the tumors wrapped themselves around the nerves, blood vessels and muscles in my neck. I had 30 rads and 6 chemos. Less than I would have had locally. I had the best and latest equipment and care as well.

I saw the team at Hopkins on a Friday morning and that afternoon I decided to seek treatment there. I called and spoke with the the local RO's office. They put the oncology nurse on the phone. When I told her, she was flippant and short with me. My call and voice mail to the MO's office was not returned. I have no regrets.

As I mentioned in a previous post. I'm convinced, had I stayed local and got treatment here, I would not be writing this. It comes down to confidence in your team. Personally, since you haven't actually started rads and chemo, you can still make a move. I did and I'm here to write about it.

"T"

Thanks all, lots to think about here.

The CCC was the ONLY choice for surgery because it was the only place regionally offering TORS, which I'd decided I wanted. At this particular CCC, after surgery the RO replaces the surgeon as the lead. So in my mind, this is a natural transition point if I decide to change institutions. All of my medical records are seamlessly available electronically.

I have consultations at both locales this coming week.

I have some deficits post-surgery that have led me to think more realistically about my ongoing access to supportive care (dysphagia, speech impairment, trismus, arm ROM).

Also, the RO is recommending radiation only. That contradicts my surgeon's comments and those of another attending doc, who thought chemo would be needed due to lymph node size (2.8 cm) and location (both neck and retropharangeal). When I question the RO he doesn't really explain his thinking.....But he does offer involvement in a clinical cetuximab trial open to rad-only patients. So I want a second opinion on whether or not chemo is advisable, in any case.

T's story is horrific, but I almost wish the distinction were that clear here!

Mama,

Personally, of course I am no Oncologist, but I would be VERY hard pressed to rads only. The rationale for chemo along with rads is makes a lot of sense. That is, platinum based chemo acts as a radio-sensitizer, meaning it makes the radiation more effective and the chemo in the larger doses may mop up any stray cancer cells outside the rad zones.

I also had induction chemo with TPF (Taxotere, Cisplatin, and 5FU). This triple cocktail is VERY powerful and generally kills all microscopic cancer cells as well as reduces the primary cancer too.

Mamacita,

I agree with Foo above. Chemo is rads helping hand. The tumors in my neck were extracapsulated so chemo was required as a mop up for any stray cells that may have been on the lymph highway. I'm surprised based on the size and location of your tumors that the RO is recommending rads only. All it takes for a recurrence is one cell taking hold. Chemo get's those little hiding buggers away from the primary site.

Good luck with the consultations!

Positive thought and prayers

"T"

I like to have the best of both worlds, a distant CCC, which is not far in NYC, but going 15 miles can take a few hours, and a local oncologist. who I keep in the loop with everything, who can handle any minor, sometimes life threatening, after care issues, as happened to me several times with severe anemia, acute kidney failure, infections, that were treated, hospitalized locally. A distant CCC may be too far away, doctor may not be available, and top ones seem to be away often giving lectures, attending seminars. A local dr may have even referred some to a CCC, who do the treatment planning, surgery, chemo, radiation, who may have a working relationship with a CCC, which is even better. Good luck.

Paul,

Given your very extensive treatment history and your own thirst for knowledge, you are quite qualified to pick and choose and assemble your own custom medical team, combining independent and CCC expertise.

The issue the other 95% face is going to a doctor on Monday, getting a biopsy and results later that week and learning they have cancer. Then everything is just a blur, fast and furious, and there is no time or ability to get up to speed sufficiently to make informed decisions about treatment and selecting the best medical staff for the specifics of ones case.

When faced with obvious substandard care such as "T" experienced, it becomes much easier to say PEE-OOH, this stinks and I am out of here. But most providers offer reasonable patient interface so it is much harder to evaluate their competence.

Even asking simple questions like, "How many cases like mine do you handle each year?" These can be overlooked with the overwhelming cloud now looming overhead, thundering CANCER at you.

So, if a CCC is an option for care, it is quite reasonable and prudent to seek and push for having your care at a CCC, just play the odds the CCC will offer better outcomes.

don

I'm not saying not to go to a CCC, do so, but long after your treatments, maybe sooner, you will need care that is not a major issue, maybe not even cancer specific, although reoatec like anemia, kidney, thyroid, infection, teeth issues, etc, which can be treated/monitored locally, sometimes required weekly, instead of traveling, possibly hundred of miles, maybe longer, for some to their CCC. Many seen a local oncologist, ENT, before going to a CCC, and may be a good idea to keep them in the loop, not during TX, but after for future purposes, if not, sometime along the line maybe find one, and a CCC can help with that. I do, and after I see my MO, RO, and ENT every three months, I see my local MO to keep in the loop, and for prescriptions, CBC, shots, sign medical papers for various reasons, anything else I may need, who also oversees my care if hospitalized locally, which happened unexpectingly several times. One is not running to the CCC, if not nearby, for that stuff, and I'm close to mine, 13 miles, compared to some living further away. It is not my recommendation, but a professional one I read about, and what some CCC do anyway, treat the cancer issue, and send you back to your original doctor back home, wherever it is, and whoever he or she may be, for care. Mine did for my recent acute kidney failure in May...go see your PCP, which is basically my local hematologist/oncologist. I don't even think my ENT deals with dry mouth issues or anything minor, and is strictly a cancer surgeon. I would have to see the SLP for that. I left one CCC for my last treatment, and was going to be sent back to them after treatment, post scan, but coincidentally, my ENT at the other hospital left for private practice, and did not have any current ENT, although there was a replacement I never met, but I'm sticking to where I'm at now. That's another issue, some use the CCC as a stepping stone, and may not be there long term, but another doctor will be assigned. Since my original treatment four years ago, my MO and ENT left the hospital.

Here's where I landed.... I'm going to have chemoradiation at the large teaching hospital in my neighborhood, not a CCC.

My MO here is a national leader; he co-chairs the RTOG clinical trials board, edits journals, etc. etc. He explained quite clearly why I'm high risk for recurrence, citing specific research for every one of the assumptions that lead him to believe I need chemo:

-- "clean" margin <1 mm
-- retropharangeal node + multiple nodes
-- smoking history >10 pack years, regardless of how long ago

His recommendation for chemo contradicts the no-chemo recommendation from the RO and MO at the CCC, but his reasoning is sound and makes intuitive sense to me.

My local RO comes with the highest possible recommendation from the top RO at the CCC. I feel very confident with this team and plan, which as T points out is essential.

The local convenience is already paying off. The MO wants a baseline hearing test right away, and when they called this morning and offered me an appointment today I was able to leave work for a few hours to take it.

I'm very glad to have had my surgery at the CCC, and to have sought opinions there about my next phase of treatment. In my case, though, the non-CCC option and treatment plan turned out to be the smarter choice in quality of plan, quality of docs and logistics.

I'm super relieved to have made this decision this week and be moving forward. Thanks to everybody who helped me sort this out, I really appreciate the input and support --

<<<HUGS>>>

Mama

I know I am late to the party but I would like to relay another story. My brother had metastatic kidney cancer. He chose locally in a smaller city in a rural state. His do our was on the clinical trial boards for all kidney cancer. This alone gave my brother enough confidence to stay local. I would have to say the care was second rate compared to the CCC I went to. The doctors here even followed the case and suggested several things that were ignored and cause excessive suffering and struggles. He had to have his lungs drained multiple times yet they up used a needle each time and it was incredibly painful and the docs expected to do this often aince my brother was diagnosed terminal from initial diagnosis.

Also, dialysis was never even offered and the edema was so bad from compromised kidneys that he gained 50 lbs in each leg. After weeks of complaining they sent someone over to wrap each leg over 2 days. It brought the weight down almost 100 lbs total and prevented him from wearing a pressurized suit because of the pain. Over the two years of suffering I believe had just these two areas been addressed early, quality of life would have greatly improved. My brother was offered lading edge treatment ala clinical trials and this was what his doctor did. When the trials weren't panning out, my brother changed doctors and the care improved exponentially till the end. However, the quality of life issues prevented him from enjoying his last two years beyond what I would call inhumane.

None of this is meant to create fear but the truth is...many only get one chance to fight this horrible disease and the things I have seen in the past 10 years are enough to keep me seeing the best possible treatment in terms of doctors and facilities.

It must have been so hard to see your brother suffer, and believe it was preventable. My heart goes out to you.

I know CCCs are the holy grail around here, but I am the wee small voice in the corner saying, "...usually best....not always." I think it's dangerous to assume that CCCs invariably provide better care, and close-minded to conclude that no non-CCC institution can ever be as good as a CCC.

The non-CCC I am using is a large, academic and research institution that treats HNC all day long, has a dedicated HNC team, the same technology as the CCC, and some major talent assigned to my case.

Many, many people don't have the luxury of a CCC due to distance, insurance, logistics, disposition, you name it. Please don't make them feel anxious about their option. Consider that 16 U.S. states do not even have a CCC. In my case, going to the CCC would mean foregoing chemo. Maybe some will think that if that's what a CCC recommends, that's what I should do.

Hey Mamacita,

I'm glad you made a decision to go with your gut on the team. The fact that the CCC recommended the RO had to make you feel good. Researching your team members and their credentials is a vital step in giving you the confidence to move forward. I agree that there are many non CCC hospitals that are on the cutting edge and a teaching hospital is often filled with the best and brightest. Johns Hopkins is a teaching hospital and a CCC and I can tell you that some of the interns and students that attended to me during my treatment were scary smart! You'll be in good hands I'm sure.

Now, get yourself ready for the ride. No sugarcoating here...it's a rough one. It sounds like you have a good team behind you and one that is looking out for your best interests and survival. Now, go kick cancer's a$$!

Positive thoughts and prayers

"T"

As I have previously posted earlier in this thread, it does make a difference where you are treated. This is not an opinion, it is a scientifically proven fact explained in greater detail in the links on my other post. A hospital can only be as good as the people who work there. Not every single small facility gives sub-par care and not all CCC's are created equal either.

OCF will always recommend a patient get the best doctors and get treated at the best facility they are able to. Everyones situation is different and they need to do whats in their own best interest.

90% of cancer patients are treated at community hospitals, and some may be a Comprehensive Cancer Center or Cancer Center having top doctors, state of the art technology. Any place can be called a CCC or CC for that matter. There is no trademark, qualifications or restrictions for its use. There are ones designated by NCI, and NCCN, and as Christine mentioned, not all are equal. As far as NCI, some may have qualified for one cancer, but not all, and it has do more with grant money, meeting other qualifications, and not the outcome of any cancer treatment. and some may have even used their clout to get a designation. Then there is the listing themselves, there are 26 or so NCCN designations, and almost 50 on the NCI approved list, maybe I have it backwards, but about 25 are not on both listings or more, although some may just do research, but otherwise, why? I guess you have to look further if it truly is a CCC or CC, how obtained, patient outcome, who they really serve, and probably goes deeper than just a CCC or CC designation. Also, I was treated at two large high volume world renowned CCC for HNC, one community hospital, none which are on the NCI or NCCN listing, and see some other top rate CCC in NYC that aren't either, then some unheard centers are...makes you wonder?

Not to be stubborn, but I still have a great deal of disquiet about blind faith in CCCs. Christine, you very kindly provided links to two news articles about outcomes at various institutions. I tracked down abstracts for those studies (couldn't get the full studies), and I don't read them as endorsing CCCs. Neither study abstract mentions CCCs, and neither concludes that CCCs are superior or more likely to follow NCCN guidelines.

http://onlinelibrary.wiley.com/doi/10.1002/cncr.27976/abstract
Concludes that for HNC patients older than 66, high-volume hospitals provided nearly statistically significant gains in survival and that both high- and low-volume hospitals followed NCCN guidelines.

http://oto.sagepub.com/content/147/6/1083.abstract
Concluded that HNC survival rates are higher in academic institutions.

I'm guessing that these may not be the studies you had in mind -- Or is there something I'm missing here?

Please understand, I'm not anti-CCC; I just don't think any doc at any CCC is automatically better. My own experience is that choosing a CCC isn't enough:

-- It's essential to get at least one second opinion from another CCC or high-volume academic institution. There are major controversies in HNC treatment, particularly for HPV+, and the best docs can have widely varying perspectives.

-- No matter where you go, you should also choose the best doctors. Do your research before you call so that you can request the best doctors by name. Even CCCs have some docs who are stronger than others. Ask your GP, ENT or medically connected friends to recommend the top docs. Look at each docs publications -- Do they publish? Does his/her research show a predominant and recent interest in HNC? Do any of their publications concern your particular HNC? Is the doc in a leadership role at his/her institution or in national medical groups? All are signs that the doc is at the top of his/her field.

I think it's great to consult a CCC if at all possible, but I don't think people should rely solely on the CCC designation. Just my two cents --

I would like to be seen at an institution where they have the most modern equipment (means they can pay for it), they hire the best of the best (they can pay the best salaries), and where the are doing clinical trials (not everyone gets to play in this game, and if so not in most trials related to our area of interest), where they see the largest patient volumes, (they have the most experience, have seen the most complications and are better prepared for when something doesn't go as planned, as they have seen that something a hundred times before), and are rated well by an independent source like the US News and World Reports annual survey which looks at many more criteria than I have mentioned here. By and large a small community hospital on more than one of these points can't offer the same as a big teaching institution that is a NCI designated CCC. This isn't my opinion alone. The hospital ranking system uses these same criteria, including which I didn't add, survival rates, doctors education, number of doctors per patient, number of nurses per patient, and affiliated ancillary staff such as a dedicated dental oncology department with in the H&N department.

Top ranked cancer hospitals in the US by an independent surveyor.

http://health.usnews.com/best-hospitals/rankings/cancer

How this survey is conducted and using what benchmarks

http://health.usnews.com/health-new...ranked-the-best-hospitals-2013-14-an-faq

Often times we justify our actions based on less than completely objective criteria or lack of fully exploring all options. For many reasons, I submit researching and selecting cancer providers may well be given less time than selecting a new car.

There has been ongoing discussion and debate about receiving the best outcomes for HNC patients from the many provider options: local, regional, and national. Most focus has been on local vs national and not much discussion on metro/regional options.

Many of us live in or close proximity to metro/regionally ranked facilities and wonder how much we give up by selecting a regional facility due to location and access, time, etc. In other words finding a balance between good outcomes and managing many months of numerous short and long trips for service.

Over the years I have worked very hard to quit second guessing decisions and this applies to all my cancer decisions. That said, I still revisit past decisions not to do the woulda coulda shoulda thing but just to assess the pluses/minuses of my decision.

Maybe living in the SF Bay Area is an unearned luxury as it seems there is an abundance of excellent national and regional choices for cancer. I did not have the luxury of having a blank check nor the time to really assess my options so maybe more by dumb luck and circumstance the providers who have and are treating me turned up in the top metro/regional rankings.

http://health.usnews.com/best-hospitals/area/san-francisco-ca
http://health.usnews.com/best-hospitals/area/san-jose-ca
http://health.usnews.com/best-hospitals/area/sacramento-ca

What I wonder and maybe others facing similar choices would like to better understand is at what point do the differences become small enough that other factors can lead to a regional vs national selection?

I know this is a repetitive post but having been treated at a CCC (Johns Hopkins), I can attest for the level of care I received. Fortunately, I didn't have to look too far away. The US News report, the fact that a friend was successfully treated there and the credentials of my team was enough to know I had selected a Cadillac as cancer hospitals go (insurance covered it too).

However I agree with Mamacita that we shouldn't just "blindly" decide to be treated at a CCC just because it is a CCC. You still have to check out the team and feel comfortable and confident in them. I also agree that a teaching facility is a plus as they will attract some of the brightest and best.

My decision was made even easier based on my negative experience locally. Also, what made my decision easier was the fact that my ENT/Surgeon and RO treated my friend's BOT cancer. He is a musician as well and they saved his life. He's 2 years NED, performing/singing again and doing fine. Finally, upon researching my team members, I found them to be some of the brightest and best in their fields.

IMO, one aspect that is vital regardless of the facility is the "team" approach. CCCs, to best of my knowledge use the "team" approach and the team then consults with a tumor board where even more experts discuss your case. Knowing my team were in constant contact with each other concerning my case was quite comforting. My experience locally was the complete opposite.

Bottom line, I definitely agree with going to a CCC but it doesn't mean you cannot be treated with the same level of success any elsewhere. Ultimately, it comes down to logistics, insurance, financial consideration, confidence in your doctors and your own gut feeling.

"T"

Here is an article that may be helpful from the Journal of Clinical Oncology, "Understanding Cancer Centers."

http://jco.ascopubs.org/content/20/23/4503.full.pdf

Great article, Paul. It really peeks under the cover the medical institutions and reveals just the tip of the iceberg of the realities of what and how and who is organizing and operating the facilities as well as the agendas naturally inherent in any organization.

[quote]Well over 90% of cancer care is provided in community settings[/quote]
If in fact this quote is true then it is desirable the forum temper its zealousness over NCI designated CCC and offer comfort to the vast majority of patients who receive treatment at regional-local facilities.

It is wonderful when one has the opportunity and ability to take advantage of services at a CCC but comfort should be offered to the 90% who find service elsewhere for many different reasons.

Thanks, Don. I thought it was interesting also.

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

Hi Mamacita,
After making a few calls to the RO I finally will start radiation on Monday as well as Cisplatin 3Xs.
To answer your question about Cetuximab well when first diagnosed, the ENT surgical oncologist said that surgery was out of the question. It would be too extensive. He said I should consult someone for chemo with radiation. I went to a CCC, after speaking with the doctor about my wanting surgery, I was started on Cetuximab and after one week my lymph node responded, what I thought was very dramatically. After my second chemo I had my next scheduled visit with my ENT oncologist. He looked down my throat and said that he could do the surgery. I asked him about his previous comments. He shut me down by saying that he was the expert. He did not follow up with any other info. I continued with my chemo and told the CCC oncologist at the scheduled visit with her. She said that the ENT did not contact her with any info. She called him and he said that he didn't remember exactly what he had told me. I stopped going to that doctor. I went back to my second opinion ENT surgical oncologist. He had been more thorough at my first visit. He still stated that Cisplatin and radiation was the way to go. So, between scheduled office visits and misleading info all of July and most of August went by. That is why I was taking Cetuximab with no radiation.
I am wishing the best for you. Hang in there. Talk to you soon.
Steve

Pretty much all IMRT radiation these days is arc based. The very nature of how IMRT is delivered is the principle that lots of very tiny (pin point even) beams of radiation from an unlimited number of angles, intensity, and duration, provide the exposure. Hence the delivery head of the machine rotates in an arc around your head to do so.

The most important part of IMRT technology is having a great RO, dosimetrist and physicist to do the map of what is going to get radiated and how much to where. Considering the primary, the known pathways of metastasis to the neck, and all the vital structures you would like to avoid or touch as little as possible, they come up with a map of what your radiation exposure looks like, almost like a topographical hiking map of concentric forms, each band with a different intensity and duration and spread of radiation. So regardless of the type of IMRT machine, and the software that runs it, it is really up to the staff to get you the optimum map that will give you resolution of the cancer while avoiding vital structures if possible. To suggest that heliarc IMRT is somehow better, is negating the fact that someone has to program it properly, without which it is no different than any other machine or software.

RO's and the dosimetrists/physicists that they work with, have to know anatomy like a surgeon does these days to get the optimal results. But given how few institutions out there that have not converted to IMRT delivery systems in the last decade (hardly any, and certainly no bigger ones), this is a discussion that you don't have to have with them.

The old adage that you can give a monkey a typewriter but that does not mean he can write War and Peace, comes to mind. The variable in all this is not the piece of equipment or software (the real breakthrough) it is the knowledge and experience of the human team being applied to use that tool. Since this is in the big versus smaller institutions section, it can take years for this team to get really good at using the IMRT technology as it requires a great deal of sophistication in anatomy, and actually working with this breakthrough software that is so completely customizable. Bigger institutions may get up to speed on things faster given that just see huge volumes of patients compared to smaller institutions. I have been told by several RO's that there is a significant learning cure involved when all this technology came about.

http://www.ncbi.nlm.nih.gov/pubmed/20384272

http://oralcancerfoundation.org/facts/radiation.htm

http://oralcancerfoundation.org/facts/imrt_radiation.htm

Thank you, Brian. You always explain it best.

Hi Brian,

I'd like a bit of help clearing up the role of dosimetrist vs medical physicist. My experience had me believing the RO and dosimetrist worked together to create the map and dosage using the software planning tools.

My understanding of the role of physicist is to establish and monitor standards and procedures are being followed as well as calibrating and testing all the accelerator hardware and software and facilities. It did not seem the RO and medical physicist had regular interaction on each individual case as is the case with the RO and dosimetrist.

Not every facility has all three types of people, and those behind the curtain that we never see, are sometime one, two, or multiple people with different titles. While they are two different kinds of jobs, this is an issue of semantics when you look at it nationally. In some smaller institutions one person does the work of both job titles.

Bottom line a patient will never interact with these people and patients coming to the forum don't need to concern themselves with these individuals, as they do not interact with patients as a matter of routine, and we will never know or understand their job well enough to consider (scientifically ) what they do our how it might impact us, nor offer questions up to them that might change the direction of our treatments.

Suffice it to say there is a person who labors over your scans creating a computer map of what radiation, how intense, and of what duration and dispersion is going to hit you in all the right places. That person is a vital part of the working of it all. There is in every department in a cancer center an individual that see that equipment is in calibration, that proper protocols for the administration of things like radiation are being put in place and followed. Be it the radiation department or the pathology lab, there are oversight people who are ensuring that things are calibrated, state and national laws and procedures and protocols are being followed.

If someone really cares to dig into all this they should go here or have a conversation about it with their RO.

http://www.medicaldosimetry.org/generalinformation/medical_dosimetrist.cfm

http://www.aapm.org/pubs/reports/rpt_38.pdf


Going into detail of what all these vitally important people do is beyond the scope of the forum, and what patients need to know to navigate to a good institution or understand the care they are going to receive.

If anyone is really interested I will post more links on what all these different people do. While it's all interesting, it isn't something that you can evaluate or have a really informed opinion about that would alter your treatments. If it was we would have put up articles about it in the radiation section of the main web site. The review of that section of the site was done by OCF board member Dr. Kian Ang, who up until his death not long ago was head of radiation oncology at MDACC.

Thanks Brian,

I had the same links in my journal plus this one http://www.mdcb.org/ which is more for certification. Your description is much as mine is about these folks. I more equated it to the wizard of Oz, behind the curtain doing miraculous things but ultimately still a human being. :-)

Personally, at my radiation facility there is a wall with all the personnel there with their titles/roles. From my recollection, which could be way off, there was one medical physicist, two-three dosimetrists, and five radiation oncologist plus supporting staff.

The RO went over my map on paper, not the computer program, showing the targeted areas, the varying intensities and contouring. I was assigned to the Varian Trilogy for IMRT and I asked if they used Eclipse for the mapping. He was not sure so it seems this facility has the dosimetrists running the mapping programs.

Thanks again for your informative reply,
don