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donfoo Offline OP
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In another thread this post was made by Brian and rather going off topic this new one addresses the specific issue.

[quote=Brian Hill]
........
Getting to the physicist will be tough, and they routinely do not interact with patients. Not their job, and also they likely do not have any kind of tracking or reporting system to gather data.

So when a a doctor tells you that 80 percent of their patients have no dry mouth issues or whatever, I think they are pulling that number out of their rear ends´┐Ż at best it is a gut idea, and anecdotal information. [/quote]

Well, this is a bit disconcerting to say the least as one wonders how these professionals gauge their own effectiveness over time and make adjustments to their understanding and techniques to achieve improved QOL and survivability.

Increasing my awareness of the critical nature of the radiation plan and work done by the "Wizard" behind the scene has initiated a new mission to obtain/extract a "second opinion" on the physicist's calcs and mapping plan.

Given others have far more experience with requesting and getting second opinions, how unusual a request is it to ask for a second this deep into an existing treatment plan?

My impression the great majority of second opinions are performed in the window when the primary team develops the diagnosis and treatment plan and it would be somewhat unusual to ask for a second opinion on a specific aspect of the plan once started.

Of all things one can get spooked about the entire cancer experience, CRT for me is the "gauntlet" and nearly universal anecdotes support the impression it is inescapable and just plan nasty or nastier and rather prolonged, even post CRT.

Anything I can do the ensure optimal IMRT delivery is what I am working on and getting peer RO/physicist review of the plan would offer great comfort that my custom CRT plan is going to leave me with the least amount of suffering and collateral damage while not compromising the efficacy of the CRT. May need to add the MO back in as the chemo and radiation are partners in the overall plan.

Thanks
Don

Last edited by donfoo; 03-08-2013 08:12 AM.

Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
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I think that you get one chance to decide something in your journey, and that is to pick the best cancer institution and team that you can find, afford, or that your insurance will pay for. After that we have to put ourselves in their hands.

For me, even with a strong science background, I went with opinions of others who were experts in the field, to find the right hospital. I don't think that I was capable of asking the right questions, nor was I capable of understanding the answers.

Respectfully, 99.9% of us are not physicists - anyone that is, is going to have to dumb down the answers for us to get us the basic understanding of things, and then, your case is really unique and cannot be compared side by side with any other case that is exactly the same. I get more than most, the desire to understand all this, and I question everything. But at some point you have to say these are smart, current people in knowledge, with the latest technologies at their disposal, and they and the institution have stellar ratings when looked at by other critical sources. I think anyone who believes that they can get up to speed on radiation technologies enough to have an intelligent conversation with the planning physicist, in which they could actually be a productive part of it all, and afterwards make a decision to do A or B is kidding themselves.

We have lost a couple people here that got caught up in multiple opinions and wasted lots of time traveling from place to place. Not suggesting that you are one of those people. But at some point in time, cancer treatment becomes less something that we can actually contribute to, and more a leap of faith with people that we put our trust in after evaluating not what they are going to do, but the doctors themselves. I think at at top rated cancer center, like an NCI designated CCC teaching institution, which has multiple teams of doctors, and very strict protocols and oversight, it would be hard not to get the best plan and treatments.

Picking the institution and team is the one thing you have a choice in. We are not going to tell doctors how to treat us for the most part. Our desire for control anything in this situation in particular is a castle built on sand.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Agreed with what Brian says - go to the top facility you can go to - and trust that they know their stuff as its what they do. Honestly even the best RO's ,don't know all of the fallout from rads because they've never been there - and they only know what their patients tell them about what they're experiencing and can give you an educated opinion on what the potential of frying a particular will bring about - they get their knowledge from teachers, text books, and patient interaction . That's why being here and reading what others have been through is invaluable.

Last edited by Cheryld; 03-08-2013 08:48 AM.

Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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You can always seek a 2nd opinion, but will be asked, why, being you are already being treated elsewhere, and may even not been seen. Major CCC pick you, you do not pick them. I was denied as consultation at MSKCC for my last recurrence, even after I sent them 400 pages of documents, 10 cd's, and said sorry. My current RO, who was also in consideration, then said, I know you have been searching around lol, but you will not get a better offer elsewhere than what I'm offering you. No doctor is obligated to see or treat you.

Sometimes you have to trust your MO, who is overall in charge of your treatment planning, and physicist. I would not insult him by requesting to see the physicist or treatment plan, which is very complex mathematics, and they probably put them into a sophisticated program. I sought out the best RO, researched his background, read his abstracts, and many books. I'm somewhat familiar with the treatment planning, equations by name only, with QL, GTV, BED, EQD, etc. but is beyond my scope to figure out.

Also, you already started the train rolling by having 2 rounds if induction chemo.
Your time is more limited, and have to complete the whole "treatment package" in a certain time, for optimal results. Getting a 2nd opinion, going elsewhere, will take time, and some may require thier own testing, scanning, and planning, which takes up more time, but it is better to delay radiation, than to disrupt it, but should be for good reasons.

You can always ask any question politely, by not being insultive and not effecting future relationship with your doctor, and each can be different in thier response. I do have copies of my records, and treatment planning report with the cumulative dose volume histogram, ratio of total structure volume, target volume, fractionization, fields, color CT images, etc after I started or rather completed treatment, for my records.

I hope this helps.

Last edited by PaulB; 03-08-2013 09:19 AM. Reason: Doody for repeats, did not see responses.

10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
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06/11 30 HBO
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08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
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12/13 25 Protons 50Gy 6 Wks Carbo
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03/15 Sequestromy Buccal Flap ORN
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02/19 Finally Cancer Free Took 10 yrs






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donfoo Offline OP
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Thanks all. I truly respect your opinions. It was the earlier post that got me jumping, forgive me. At this point the only thing I could influence is maybe the assignment of physicist on my case but even that is a long shot, especially if this function happens to be sourced to special practice of rad physicists and it is just a draw of who gets assigned to do your mapping.

I am in fact quite impressed so at John Muir Cancer Institute. I've only visited my RO once so far but the facility surely has sufficient capacity to indicate to me they do this alot so I am confident the expertise and experience lies inside the walls of the facility and will place my trust in them as I have each specialty team I am working with thus far.

Thanks again for keeping me focused on the right stuff!

Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com

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