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Different Docs, same center, different opinions.....?


Guest hearrean

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Guest hearrean

Well after today's MD Anderson visit, I am more confused than ever! Yesterday I saw my Thoracic Oncologist at MD Anderson & he was pleased with the results of my (4) weeks of chemo treatments. As my profile states, there was as much as 50% reduction in my mass & nodes. He said he would suggest now adding radiation and treat as "curative." (He actually used that word)! He said I would be seeing their Radiation Oncologist today and he would probably set up the protocol.

Today I met with the Radiation Oncologist & he just impressed me as "Mr. Doom & Gloom". He wouldn't comment on what his colleague said yesterday, but did say that I should be aware that LC (beyond stage I,possibly II) just doesn't have a good prognosis particularly my Stage IIIa. I asked him about continuing my treatment here at home with the added radiation, but he advised I do it there at MD Anderson due to their state-of-the-art facility. Also he wanted to possibly try Proton Therapy even though he said that many insurances won't cover it. I would have to go for 35-37 treatments (7 weeks X 5 days) + weekly chemo using the same chemo drugs as before. But he didn't & wouldn't give me positive feedback about the outcome & just kept saying that any advanced stage LC doesn't have a good prognosis. So I say to myself, if he believes that, then why would he want anyone to put their body through his recommended treatment which, even he said, would probably carry heavy side affects even using Proton Therapy.

So now, I am considering going with IMRT (Intensity Modulated Radiation Therapy) with chemo & having the treatments done here locally in my home-town which is where I had my chemo. There is "The Cancer Centers of SE Texas" here which has (3) former MD Anderson alumnus & although they can't do the Proton Therapy, they can do the IMRT which I am hearing is just about as effective. I just know I probably need to get my chemo going again pretty soon. I had my last infusion on 12/27. But I can't see the Radiation Oncologist here at this center until Thursday week. So it would be alt least that long before I can re-start chemo + I think it takes them a week to get someone's radiation protocol set-up.

I just hate this confusion & roller coaster ride. One day, good news & the next....not so good.

Ken

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Hi Ken,

Hey -- IIIa is considered curable. I'd keep that in your heart and soul and forge ahead. Good luck in your decision making process and I'm glad to hear you had such a great response from the chemo already. A 50% reduction in four weeks is awesome. :D

Regards,

Welthy

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i find it odd based on my experience which has been that rad onc drs seem to be more optimistic than a lot of the med onc folks. which is not unlikely given the role they play in the process. med oncs see everything, the rad guys just see the patient for a finite period and send them off hoping for the best. so they do tend to have a bit more optimistic attitude. i found that with kelly's team but i also find it with my work colleagues. 3a and 3b can be cured, the numbers may be low and sure as heck not where we all want them to be, but the fact is, they can be cured and until all data says otherwise, the drs should be treating with curative intent. i used those words a lot when explaining things to my sister. she too did 2 cycles of chemo, then a scan that showed enough reduction that they could irradiate without as much worry of damaging healthy lung, then concurrent rad and chemo. and all of it done with curative intent. now we are heading for surgery and again, with curative intent.

your rad does sound like a doom and gloom sort. i can't speak to the proton therapy vs standard radiation and comparative efficacy or toxicity. but i think you should listen to your med onc and forge ahead with curative intent.

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------ Cat,

I don't think doctor's treat any stage of lung cancer with anything other than curative means. Although we knew my husband was in the "incurable" stages (IIIb & IV) and they termed it palliative, he received the same treatment as any other earlier staged cancer patient and then some. If a doctor isn't being aggressive and treating it from that perspective, I'd get another doc. Any change would be if the patient isn't a candidate for aggressive treatment. What I'm saying is that any treatment in a later stage cancer is the same for an earlier stage. The only difference is in the possibilities for a positive end result, not the word used. That is why I cringe seeing the word palliative used, because it makes people think they are getting less than someone with earlier stage and that's just not true. (I enjoy reading your posts, but pretty please, can you use capitals as it would make them easier to read for my older eyes! :D )

Ken - I think the radiologist was merely being cautious in his wording. I am a little surprised that he did impart this to you, but don't let it rock your world.

Welthy

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At my job, we don't call 3b incurable. There is a 10-15% cure rate with 3b. It is small but it exists. And i don't mean to myself be doom and gloom, the fact is that in the field, we use the words curative intent with 3a and 3b, we don't with 4. And we see many stage 4 patients treated slightly differently because of that. Doesn't mean that many stage 4 patients don't get the same dose/drug/schedule treatment, but they don't all. Some drs won't do concurrent raditation and chemo with stage 4, the attitude being that when doing so can't cure them, they don't want to put them through the rigors of the combination. Though i would strongly encourage anyone to be as aggressive as they want to and if you dr doesn't want to do that, then find a new dr. Kelly's med onc still thinks she is stage 4, the rad onc, surgeon and my co-workers and i disagree. But his words to her were that he still wanted to be as aggressive as he could and he wants the surgeon to take out her adrenal gland too. I love him for his combination of both compassion and agressive methods, sometimes you don't find them both in the same dr!

And we all know that numbers are just numbers and although I find them helpful to a degree, mainly I'm sure because I work with them all day, for the most part, once people hear them, they should throw them out of their heads and attack with all they can and want to, and all that medical science can offer them.

And just for you, I went back and added a few capital letters. :) But I wouldn't get too used to it, I just don't usually hit that shift key often. Since I type all day long for hours on end, I get very lazy. Thank heaven Word automatically capitalizes things for me. :) And don't get me started on my reliance on spellcheck! (which would have caught all the aggressives I had to go back and spell correctly)

And apologies again, I don't mean to sound negative but sometimes it is hard for me to divorce myself from my profession. I have had to work hard to speak differently to my sister than I ever would at work. I can be too clinical and cold sometimes and that works in the global scenario of work but not when dealing one-on-one with my family and I need to work to not do that here either, as you all aren't data on my papers but real people. Not that I don't realize you are all real people and all, but the work hat stays on pretty much all the time, hard to take it off at times. It is actually one reason why I don't post that often here, I worry that I can be too clinical and it would be more like talking to the oncologist than to a friend/supporter/person in the same boat. It is an odd feeling being on this side of the desk, so to speak.

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When my mom was diagnosed with IIIA she was told that IIIA is a "potentially curable disease". Hold onto what the positive doctor said! Another surgeon told my mom that she had a 50% chance, either she will make it or not and not to consider statisticcs.

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Yes, to Ken, back on thread, keep positive and pay no attention to that radiation oncologist behind the curtain! Was this your first experience with this dr? Sounds like one pro in the list for going to the cancer center instead. Or at least might you want to talk to another rad onc at MDA? I will say that while we adored my sister's rad onc, he is really Dr. Upbeat, the fact is, she didn't see him that often so even if he wasn't so upbeat, he might have been tolerable for us to deal with. I would never want that in a med onc though and it seems like you are pleased with yours. I wish I knew more (or actually anything) about proton therapy, and I hope someone on the board has some experience with it.

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Ken:

My dad is a fellow IIIA and is having his 3rd chemo and 10th radiation today. His docs at Johns Hopkin are treating him as curative. Their and our hopes when he finishes his treatment is to have surgery to remove his upper right lobe. Dad had to go to several docs before he found one the he "felt good" with. And I think this is vital. He wasn't out looking for a doctor that promised him only miracles, just someone with a positive attitude. Dad knows what he is dealing with, but believes that beeing surrounded by positive people is 95% of the battle.

Hang in there Ken. I see that positive attitude in you to. There are plenty of IIIA's out there to give you reason to know that you can beat this. We will be adding you and my dad to that list!!! :D:D

Blessings to you,

Teresa

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Guest hearrean

Thanks to everyone for all the positive responses. My wife & I decided last night to pretty much ignore the opinion's of yesterday's Doc (the Rad Oncologist). On Monday the Thoracic Oncologist had given me some very good feedback & again, he used the word curative. If anyone remembers that's the Thoracic Oncologist that when I first met with him had been so pessimistic about my case. But since I had such good response to 4 weeks of chemo, I think even he was surprised and that's why his attitude changed. I was just aggravated to leave MD Anderson on Monday feeling so up just to be brought down when we left there yesterday. And BTW, the Radiation Oncologist yesterday was the head of the department!

Someone mentioned in a post just above that I should possibly look for another Rad Onc there at MD. Unfortunately it seems that MD Anderson's unwritten policy is that once you are assigned to a particular Doc within a field, you cannot change to another. Or it certainly takes an act of congress!

The Cancer Center I mentioned in my initial post in this thread is run by a former Oncologist from MD Anderson & 2 other Docs there are alumnus of MD. Now they only do radiation, not chemo so I would continue to go to the other place here where I was getting chemo and then go there for the radiation part. Again, they don't have Proton Therapy there, but do have IMRT which is supposed to be practically as successful, but may have slightly more side affects, but still not as much as conventional radiation.

One last point & I promise to stop ranting. I posted a question over on the Cyberknife forum for one of the Docs to explain the differences between Proton Therapy & IMRT and the answer that the main Doc posted was that he really didn't believe in this more focused therapy particularly in the lungs due mainly to the fact that the lungs constantly move as well as other parts that are attached to the lung. In other words he didn't believe that this focused therapy was accurate and that successful. So this adds more confusion to the mix.

Ken

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Ken: Cyberknife radiation if the most accurate of any of the radiation treatments and probably has the least side effect, at least for smallish tumors, say less than 4 cm. I had ck treatment for a 7 cm tumor and now I have pneumonitis. It is the only radiation therapy that can account for tumor movement during breathing. It has sub millimeter accuracy while imrt can be accurate to within 2 or 4 millimeters, but can often be bigger, because of the movemen of the tumor. There are methods to minimize the effect of tumor movement in imrt. One method is to use an onboard imager to allow the computer to know exactly where the tumor is just before zapping. They call this image guided radiation therapy (IGRT). Some places also use a gating technology. They track the up and down motion of the chest and do the zapping at the top of the up cycle. Some places don’t attempt to account for tumor movement at all and just plan on a target field that the tumor will occupy during the breathing cycle, which is where you would get the most lung damage, maybe as much as 2 or 3 cm. If you are going to do imrt, find a place that uses the IGRT technique. Cyberknife is the best though, but there could be insurance hassles. One nice ting about cyberknife, is that you would be done in 3 treatments for a smallish tumor. IMRT would take 33 treatments.

http://www.accuray.com/patientinfo/index.aspx

http://www.elekta.com/healthcare_intern ... herapy.php

Don M

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Get rid of "doom and gloom".

Either find another rad. onc who is willing to be on your "team" going for the win (regardless of stats and in conjunction with other drs. opinions and YOUR wishes) , or if you can't change that doc then have a frank discussion with this one that what you need is hope and if he can't manage that, then at least some encouraging words or a smile on his face to replace his attitude would be nice.

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Ken, I agree, forge forward. I am a firm believer that nothing is incurable, sometimes we just haven't found the right combination yet. That could happen tomorrow, no one knows. I have no experience with the gloom and doom doctors, as ours have been nothing but positive from the get go. I sometimes wonder if our age has something to do with it. Like sometimes they think we just couldn't handle the facts. From the caregiver prespective, I have two things to look at, I need to know exactly where we stand no BS lay it on me let me know, I do that when I get the doctor alone, the 2nd side is the hey, everything's going to be just fine guy. We just keep pluggin along, if something stops working what's next? Wishing you the best of luck.

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a cyberknife facility in East Texas:

http://www.cyberknifeoftexas.com/

these guys may answer your questions about the various radiation therapies without sounding so irritated as the doc at he ck message board did.

I think you would be ok though with imrt that has some way to account for some tumor movement.

I think it would be worth a consultation trip to the Texas facility.

Don M

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Guest hearrean
"Don M"]a cyberknife facility in East Texas:

http://www.cyberknifeoftexas.com/

these guys may answer your questions about the various radiation therapies without sounding so irritated as the doc at he ck message board did.

I think you would be ok though with imrt that has some way to account for some tumor movement.

I think it would be worth a consultation trip to the Texas facility.

Don M

Thanks, Don & everyone else. When I initially posted on the CK forum a couple of months ago, I gave them my particular situation as to my type of LC, Stage, etc. The Doc there posted then that I would probably not be a good candidate for CK. I believe this was due to my tumor type (Large Cell w/Neuroendocrine features).

The Cancer Center here I spoke of above does have the IGRT technology to go along with the IMRT. They are telling me that this is exactly the same equip. that MD Anderson has. Again, they don't have the Proton Therapy which does sound like a better choice, but once I meet with this local center's Rad Onc next Thursday, I'll try and ask (& hopefully get) his honest opinion about the two techniques.

Ken

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Guest hearrean
"Don M"]Ken: Cyberknife radiation if the most accurate of any of the radiation treatments and probably has the least side effect, at least for smallish tumors, say less than 4 cm. I had ck treatment for a 7 cm tumor and now I have pneumonitis. It is the only radiation therapy that can account for tumor movement during breathing. It has sub millimeter accuracy while imrt can be accurate to within 2 or 4 millimeters, but can often be bigger, because of the movemen of the tumor. There are methods to minimize the effect of tumor movement in imrt. One method is to use an onboard imager to allow the computer to know exactly where the tumor is just before zapping. They call this image guided radiation therapy (IGRT). Some places also use a gating technology. They track the up and down motion of the chest and do the zapping at the top of the up cycle. Some places don’t attempt to account for tumor movement at all and just plan on a target field that the tumor will occupy during the breathing cycle, which is where you would get the most lung damage, maybe as much as 2 or 3 cm. If you are going to do imrt, find a place that uses the IGRT technique. Cyberknife is the best though, but there could be insurance hassles. One nice ting about cyberknife, is that you would be done in 3 treatments for a smallish tumor. IMRT would take 33 treatments.

http://www.accuray.com/patientinfo/index.aspx

http://www.elekta.com/healthcare_intern ... herapy.php

Don M

I contacted the CK facility closest to me and gave them my particular situation. Per their reply, I would not be a candidate for CK due to my regional lymph node involvement.

Ken

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Ken, I agree with others who feel you should forge ahead and I also agree with Welthy that the Rad Onc may just be overly cautious. Since you are not a candidate for CK then I say stay with MDA. They have it all, IMRT and Proton and they are tops in the field of lung cancer.

Whatever your decision I wish you well and I'm impressed with 50% shrinkage in 4 treatments. That's awesome!

Let us know what you decide.

wendyr

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Yes, I think we are all losing sight of the very good news that was in there. I hate when that happens, it has happened with us a couple times and we have to go back and say to ourselves, don't lose sight of the good news there! So congrats on the good news! And maybe you caught this guy on a bad day and next time you see him, you'll like his attitude better. In the meantime, forging on, with all our positive vibes sent your way! :)

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