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!