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I 100% agree with David. The treatment center absolutely does make a difference. If someone is going to radiate your head, you want the mostly highly skilled crew possible. Originally, my husband was offered treatment at our local, quite good, suburban hospital. Considering where they were radiating, we immediately arranged consults at MD Anderson, Mayo Clinic & University of Chicago, keeping Sloane Kettering in reserves, if we needed another choice. We got our kids covered by a family member, then did not allow geography to play any role in the decision of a treatment facility...the only factor being, where would my husband have the best chance of survival.

I stood at an observation booth, behind the women administering my husband's radiation this past summer for every one of his 50 rads. My main (self-assumed) role, was to watch his feet like a hawk, in case he got in trouble (i.e. started choking). While I stood there, I could also see the screen that showed the ever changing shape of the radiation beam that was treating (burning...whatever we want to call it) my husband, as the maching moved around his head. All I could think was, thank God his rad onc was so freakishly smart, thank God the room full of planners we walked every day were so good at their jobs as well.

When you consider the increased risk on reoccurances, you want do not want to leave anything on the table on the first shot at getting this cancer. Why not stack the deck, as much as possible, in your favor?!


wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
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[quote=davidcpa]I disagree w/ Lady re "it doesn't matter where you get the TX". IMO it matters a lot. Knowing WHAT the Tx will be and knowing HOW to administer it are as different as knowing what to do to fix your car and knowing how to do it. Designing the correct radiation plan and making sure it is followed can make a huge difference in life altering side effects. Moffitt gave me the option of being treated in St Pete, way closer to my home, but after talking to Moffitt's Dr Trotti, a leader in IMRT technology, I decided to make the 90 round trip miles every day for 7 weeks and I'm glad I did. Remember this is ONLY 7 weeks out of your entire life. Why take a chance with your body and the rest of your life? Go with the best and minimize your risk. [/quote]

But David,

Your same Dr. Trotti who knew our local MO and RO gave his blessings and suggested that we would be fine treated locally. He was familiar with both docs and their facility and equipment. Driving for us would have been a 200 mile roundtrip and Bill was receiving rads twice a day so we would have opted to stay at the Hope Lodge at Moffitt had we had treatment there. Fortunately we had an easier option.

Everyone has a little different situation and yes, you must research to make sure the facility you are choosing applies best practices but sometimes there are good options locally.

JMTC,

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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But Deb....luv you now....

I agree that everyone's situation can be different but the over riding consideration should be where can I get the best possible treatment. Everything else should be a distant second. Now I'm sure that there are treatment facilities that can and do provide great OC treatemnt and just going to a CCC doesn't guarantee the best BUT what I said doesn't change that, taking everything into consideration IMO going to a CCC to be treated will minimize your risks and again this is only 7 weeks out of your life so before I would opt for convenience I would want to make sure, as you and Bill did, that I was not potentially sacrificing long term health for convenience.

Trotti told me post Tx that he had stopped designing radiation plans for other doctors where the treatement was not going to be at Moffitt because 1. he didn't have the time and most importantly 2. he feared that he would not be able to make necessary adjustments along the way. He also told me that just because you have an IMRT doesn't mean you are the best operator of it.

So if you do your homework and are satisfied that you or your loved one will get the same or better treatment locally then you have made the best possible decision but if you have any doubts then stick with the facility that minimizes the risks.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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[quote=davidcpa]So if you do your homework and are satisfied that you or your loved one will get the same or better treatment locally then you have made the best possible decision but if you have any doubts then stick with the facility that minimizes the risks. [/quote]

Totally agree and there are probably more times that you should have treatment at the CCC vs a local facility but I wanted to put a face to the alternative that so far has worked for us. I did do tons of research and got several opionions before we made our choice. Some people would choose not to be bombarded with all that input and simply take the path of least resistance but I say..knowledge is power! Had I had any concerns we certainly would have chosen to stay in Tampa for that 7 weeks.

I think we are definitely on the same page here...due diligence is in order.

Deb



Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
Joined: Sep 2006
Posts: 8,311
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Extremely brillant people think alike, or something like that. lol


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Clarification- we happened to live near Moffitt so no need to travel to Cleveland for treatment when Moffitt was closer to home. Not sure why we didn't get referred there to begin with (one doc said it was probably a business decision not to refer) but anyhow we got a second opinion. I am glad we did after reading many posts on here. Doesn't hurt. I agree go with the best and also get more than one opinion.

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Who are you seeing at Moffitt?


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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[quote=Lady1]Clarification- we happened to live near Moffitt so no need to travel to Cleveland for treatment when Moffitt was closer to home. Not sure why we didn't get referred there to begin with (one doc said it was probably a business decision not to refer) but anyhow we got a second opinion. I am glad we did after reading many posts on here. Doesn't hurt. I agree go with the best and also get more than one opinion. [/quote]

We got no referral (local ENT was very weak in all arenas..we never went back) either so I self referred by calling them and setting up an appointment. I was able to get a time within a week so I did not feel as though they put me off because of this.

Having said this, our insurance allowed me to do this...some would require a referral.

Deb

Last edited by debandbill; 10-23-2012 06:30 AM.

Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
Joined: Oct 2012
Posts: 17
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Well, I visited a RO Monday and had many questions answered. He laid out the 5 different treatment options and did a thorough physical exem.

I have a PET Scan on Friday that will give us more results - ultimately helping to give direction to which treatment will be best for my situation. He also recommended I get a second opinion on treatment from an RO at Beth Israel in NYC. We believe to have found the tumor on my right pharyngeal wall. It is small 2 cm by 2 cm. if this is in fact the tumor and there is no other spread I may be a candidate for surgical removal and radiation with no chemo.

I have started the process to get a second opinion at MSK.

Fingers crossed for good news.

The worst part of this whole process is not knowing what to do. I am a type A personality that usually has the answers - I'm really out on a limb here so am at the mercy of others.


Ray

SCC Right Pharangeal wall Stage IV HPV+
T1-2N2bMO
Dx 10/12/2012
Father for the second time to 2nd beautiful boy 11/2/12
Port Implanted 11/20/12 - no feeding tube
Tx - 11/26/12 35 IMRT Rads 5X/week Weekly Cisplatin
Last treatment 1/15/13
"Grind it out, I will be cured as I have too much to live for"
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You are in the right pace to get answers. We will help guide you thru everything plus our members are a great support system.

Get business cards and keep them from every single appointment. Also take along someone to be an extra set of ears. Some doctors will allow a patient to record their session, ask first. Then you can go back and replay it in case you forget something they reviewed with you.

Best wishes with your appointments!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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