How much does it matter where you have your radiation therapy?

Melisande

How important is it to have your radiation therapy done at a well-known institution? If you had the exact same radiation treatment plan (the same areas were to be radiated with the same dose for the same number of sessions) would it make a difference if you had this plan realized at a good local hospital or at a national cancer center? Or how much variability in quality is there between institutions? 

Pclark21st

I think it makes a huge

I think it makes a huge difference.  On our 2nd round with throat cancer we took our treatment to Dana Farber.  The radiation machine was brand new. The radiation process was very different by the fact that they did a mild CT each morning while administering the radiation to be sure the exact spot was being targeted and seeing the shrinkage to make any adjustments going forward.  

ERomanO

Do you know for a fact that they are the same?

There might be more diferences than you realize - the equipment, the planning process, the procedure, the follow-up, etc.  All things being equal I would have preferred the short drive to my local hospital, but the hospital I chose (a one hour drive one way) is one of the top rated hospitals in the US.  I had no idea what I was getting into since I didn't find this site until after I finished treatments, so I think I made the right choice.

bugsyboy

I Agree With Pclark21st and ERomanO

I'm not sure how to put this, but Cancer treatment is a service, not a product.  You need to have faith in your team, not just the equipment.  Like Pclark21st, I had a CT prior to each radiation.  I made it through 28 of 33 treatments before I had a panic attack and became an inpatient for my remaining treatments.  We believe the attack was caused by the Fentanyl I was taking.  Thanks to my team adjusting my meds and providing me the support I needed to make it through, I did.  I believe facilities that deal only with Cancer will do a better job than those who don't.  These are the facilities that have "been there done that" and don't panic should something go wrong.  H&N Cancer treatment is tough.  Go someplace where they've seen it all and done it all and will provide the best service.  Just my $0.02.

Good luck with whatever you decide.

Bugsy

Melisande

Thanks so much for these

Thanks so much for these comments. I am thinking the same thing. I so much want to stay locally. It is all the more appealing because I do not have the best prognosis and am wondering how much life I will have left to spend with my husband and friends. And no one wants to be alone undergoing tough treatment in a relatively distant city all alone. It is even harder to go when I know my husband and friends want me to stay. But, the truth is - you only get one shot at first-line treatment, so you’d better make sure you go with the best.

wbcgaruss

I Agree

With the rest of the folks on here, I had treatment at our local cancer facility.  Ann B. Barshinger Cancer Institute-Lancaster General hospital. Not a household name but a Cancer Center nonetheless and I can't say enough good stuff about all the folks they are professional and highly skilled and were right on top of things. From my radiation and chemo people, the nurses, schedulers and many more. I had some tough times and they got me through it all and treated me like family on top of it.

Logan51

Melisande

From my experience, it might make a big difference. I'm 10 years and 4 months down the recovery road. I was treated at a local Regional Cancer Center, which was the first in the Quad Cities (population 320-K+), and believe the Technicians did just what the Dr.s ordered. From what they said, I was under the impression they had talked to the U of Iowa...But I was wrong. Couple years ago they announced they finally were! And I don't see how you can go wrong with at least getting a 2nd opinion from a Major C Center on the Rad tx regiment. Your team of Dr.s- ENT, Chemo and Rad- are in charge. Mine was a bit of a joke in that for every negative symptom the Chemo Dr. blamed the Rad, and the Rad blamed the Chemo! So, I guess they really weren't working as a team- though right across the hall from one another in the same building. If I had it to do over- I would have made the drive to Iowa City and gotten a 2nd opinion from them. I'm now on a FT for the rest of my life due to Rad damage, and have been treated for years by a Neurologist for the Rad damage done to both sides of my neck.

I know we're not to talk of negatives, but...Had an ex-coworker who had H&N of unknown variety and was treated at the same place in 2006. The C came back within 2 years and he went to the U of Iowa. They told him his first tx in the Quad Cities had not been done as it should have, without pulling any punches. He ended-up going thru a 15-hour Op. in Iowa City that got him a new tongue, a long emergency Op. overnight, there, when a complication developed, and a very long recovery. And, changed him for the worse, mentally: divorce, then a couple years later arrested for rape and found guilty. And to know him before his bout w/C- no way. Just my opinion, but I think his 1st local tx that was wrong turned him into a bitter man because of the physical impact the 2nd bout at the U of Iowa had left him.

That said, I think the most important thing is to get a tx regiment plan established by the most competent "C-team" possible in your area. Wish I had taken that route.

CivilMatt

make your first shot at a cure the best it can be

Melisande,

All things being equal with the equipment, the nod would go to the most experienced (and successful) team in your area.  Also, if it matters to you, if they are nice and have a good bed-side-manner, it is nice.

If like you say “I do not have the best prognosis” why would you pick anyone other than the best? You are correct to say “no one wants to be alone undergoing tough treatment in a relatively distant city all alone”, but to be quite honest, this cancer is not your friend and (if you have a realistic) chance of beating it, then give it everything you have got to get rid of it.

There have been a number of H&N members who temporarily setup camp in another city for the duration and it does end and it is not forever and then you go home to (metaphorically) kick your husband’s butt and each of your friend’s butt’s too, for suggesting anything other than the best for you.

Matt

Sabrina23

I agree with ERomanO

Where you get treated can make a difference I believe best recommendation is to go to cancer specialty facility hospital - I went to University of Miami Slyvestor Cancer Center and teaching hospitals are good I have heard others mention that too.  Keep the faith and God will see you thru. 

ERomanO

Melisande,

Melisande,

Since we're giving examples... I had a neighbor that was a heavy smoker and got esophogeal cancer.  He went to the local doc and hiis prognosis was "There's nothing we can do for you".  So he went to Cleveland Clinic as I did and they had a surgeon that had experience in dealing with his type and severity of cancer.  He had surgery that removed most of his esophagus (leaving his voice box intact) and part of his stomach. Afterwards he lost 100 lbs, no longer had high blood pressure or cholesteral, and his diabetes disappeared.  He got 10-15 years more to be with his family.  So where you are treated can make quite a difference.

Eugene

OKCnative

I went to a local cancer

I went to a local cancer center. To me, what I liked the most was how conveneient they made it. I did 7:30am treatments daily because I drove myself to them and then straight to work. Getting up first thing with somehwere to go and something to do made a huge difference.

I also complained when they rotateed out my techs on about the 25 visit. I told their boss that as a patient I looked forwarrd to the known routine. I had enough stress without new techs learning my norms. They promptly put the old tteam back in place.

johnsonbl

If you have the option....

You should try and receive all your care at the highest level cancer center you can (academic medical center, NCI cancer center, large private multidisciplinary center)...  However, not all of us live convenient to such an institution (I work at one so I just walked down the hall for my treatments).

If it is truly a hardship to travel for daily treatments for 6-8 weeks then have your rad onc refer you to a center more convenient for you.  They will give you a good recommendation.  My Rad Oncs know who is out there and what their capabilities are.  They'll also be honest if your cancer is tricky enough that you should stay with them.  If it means you'll be compliant with your treatment plan that's the most important thing.

I've said it before, head and neck cancer in the grand scheme of things is a pretty rare cancer type.  In Iowa, it's only 3.6% of new cancers each year.  This means that at smaller centers where they treat say 400 new cancer patients every year only 14 of those would be head and neck patients.  So your rad onc is treating all kinds of patients and is likely good at all cancer types but maybe excellent at none.

At a larger center like an NCI cancer center (University of Iowa) we treat upwards of 3500 new cancers every year...so around 125 head and neck cases per year.  We have Otolaryngologists, Medical Oncologists and Radiation Oncologists that ONLY TREAT head and neck cancer.  They are EXPERTS at that type of disease.

So, if you can...get your treatment at the most robust program you can...  But if you have to receive care locally, it can be done... your docs can help you find the best place.

Best of luck,

Brandon

Logan51

johnsonbl said:

If you have the option....

You should try and receive all your care at the highest level cancer center you can (academic medical center, NCI cancer center, large private multidisciplinary center)...  However, not all of us live convenient to such an institution (I work at one so I just walked down the hall for my treatments).

If it is truly a hardship to travel for daily treatments for 6-8 weeks then have your rad onc refer you to a center more convenient for you.  They will give you a good recommendation.  My Rad Oncs know who is out there and what their capabilities are.  They'll also be honest if your cancer is tricky enough that you should stay with them.  If it means you'll be compliant with your treatment plan that's the most important thing.

I've said it before, head and neck cancer in the grand scheme of things is a pretty rare cancer type.  In Iowa, it's only 3.6% of new cancers each year.  This means that at smaller centers where they treat say 400 new cancer patients every year only 14 of those would be head and neck patients.  So your rad onc is treating all kinds of patients and is likely good at all cancer types but maybe excellent at none.

At a larger center like an NCI cancer center (University of Iowa) we treat upwards of 3500 new cancers every year...so around 125 head and neck cases per year.  We have Otolaryngologists, Medical Oncologists and Radiation Oncologists that ONLY TREAT head and neck cancer.  They are EXPERTS at that type of disease.

So, if you can...get your treatment at the most robust program you can...  But if you have to receive care locally, it can be done... your docs can help you find the best place.

Best of luck,

Brandon

Brandon

You have no idea how much I wish I had been one of your 125/year H&Ns. I did make a drive to Iowa City using an alternative route than 80 and actually walked into your C center. Did so because at the time with my Insurance would have approved a 2nd tx w/C there. The head Dental Dr. down the hall from the ENT Center is the one I went to for an explanation on my teeth problems. Did you know you/U of Iowa is ranked #3 in H&N C?

johnsonbl

Logan51 said:

Brandon

You have no idea how much I wish I had been one of your 125/year H&Ns. I did make a drive to Iowa City using an alternative route than 80 and actually walked into your C center. Did so because at the time with my Insurance would have approved a 2nd tx w/C there. The head Dental Dr. down the hall from the ENT Center is the one I went to for an explanation on my teeth problems. Did you know you/U of Iowa is ranked #3 in H&N C?

Dave,

Yes, they are ranked very high.  I actually worked in the Cancer Center a few years back as an administrator....was obviously shocked when I ended up walking through the doors as a patient.  I'm a strong supporter of receiving your cancer care at a center like mine.  These guys are as smart as they come and they dedicate their lives to specific types of cancer.  They do it all day, every day and there is little they haven't seen and are on the leading edge of new treatments/techniques.

I feel extremely fortunate to have access to these folks.

Brandon

Drivingdaisy

Bigger Center vs Local treatments

Go please, I so wish I had.  I had Stage 2, HPV+, No lymph involved, small leasion on left tonsil skins .   They pushed Me so fast locally to jump on Treatments immediately since I had had it for 3 yrs traveling Europe, any Dr I saw I would ask, they said it was nothing till I went to an ENT at one office for allergies.  He suspected it was something & did a biopsy, Came back Cancer.  Sent Me to a Chemo Dr another place & a Rad Dr at another place locally.  Said they would do a Team Approach.  Boy he was wrong.  Rad Dr was not the nicest & My first treatment when I saw the machine had a bad feeling, looked old & it did break down probably 3 times during My Treatmen.  Rad Dr didn’t really confer with Chemo or ENT so forget Team Approach.  I am almost certain he over radiated & too big an area.  Almost 4 yrs later at this moment Cancer free won’t know till next Month for next check-up with Chemo Dr But......NO Saliva already had to go to Baton Rouge to have dilation surgery to open damaged ducts.  They have since shut down again & looks like the glands are probably fried.  Thyroid is shot.  So yes, I’m angry at Myself for not putting the brakes on till I went somewhere like Mayo or MD Anderson for their opinion.  They have better machines & a real Team.  It’s worth going.  No Saliva & desert dry mouth 24/7 is really horrible, Thyroid is a mess, please think about a second opinion & trust your gut where you feel more confident at.  Your the one that has to pay the price Not them so go for the best so you can live a quality of life.  Trust Us that admit to making a mistake, now I have to live like this in pain, so very uncomfortable, many new medical conditions due to the treatment, for possibly the rest of My life which I wish would just end.  Going to Mayo In Jacksonvill,Fl next week to see if they can help with some answers or treatments.  Fla Local Drs In My area are the worse I have ever had from New ENT ( old one left & moved up North), to a Endo, Kidney, GI, won’t ever speak to Rad Dr again he was so insensitive, Internist.  Money grabbing, pill pushers & Not very competent.