I was just searching for something on this topic in the on-site search function and no results came up...also I did click on any of the previous searched topics and no results came up...I guess this might have something to do with the recent site issues from being 'cyber-attacked'...
I apologize if this has been addressed before..
my question(s) is/are as follows :
My mother has adeno, stage 3A at this point. We were just seen by a Dr. Roger Cohen @ UPenn in Philadelphia, PA yesterday. (Do any of the doctors on here know him and or know of him?)
He brought up an interesting point yesterday (at least interesting to us) that the standard of treatment/care for lung cancer for chemo has not really changed too much over the last ten to fifteen years. Is this true?
This really leads me to my question/issue... my Mother is seriously considering receiving her treatment at UPenn versus where we currently has it established and is to start this coming Tuesday the 28th. The current scheduled location is gerographically closer to our home and is more rural. It is Geisinger Health System's main location in Danville, PA. Anyone know of Geisinger Health system? Anyway.. to the real question/issue..what benefit(s) and or drawback(s) is there and or could be in receiving standard treatment for Stage 3A aden at a somewhat smaller facitlity versus a larger more academic based, prestigous institution?
...what concern(s) if any which I'm sure there are..what should we be concerned with versus one place giving radiation and chemo verus another if current standard of care/treatment is the same for basically most if not all the medical providers in the United States?? For example...the 1st oncologist did not ask anything about my mother's hearing and the other oncologist did and stated that a chemo drug can cause deafness & she have an audiogram prior to any application of cisplatin? My Mother's gradual loss of hearing is in her medical records and the 1st oncologist didn't address
standard of care/treatment at different facilities - 1247140
dkm5859
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Reply # - August 21, 2012, 11:29 AM
Reply To: standard of care/treatment at different facilities
From Dr. J Weiss' very good blog post on second opinions he describes the the academic second opinon doctor and the local doctor working together, "Well, if you have a good local oncologist, you have just added another member to your team. Many patients fear that their local oncologist will be jealous or that the academic doc will only be interested in them if they can take over care. Neither could be farther from the truth. For a variety of reasons academic and local docs often love to cooperate to provide optimal care for a patient—in quick summary, it naturally aligns with the interests of what each enjoys doing. Success in providing best care as a team involves communication. Doctors primarily communicate via notes. While phone calls and emails are a part of care at some decision points, notes are especially powerful because they convey a great deal of detail. You can facilitate this exchange of notes by bringing each of the doctors each other’s cards. This is worth doing even if one of the doctors referred you to the other." http://cancergrace.org/cancer-101/2011/11/13/an-insider’s-guide-to-the-second-opinion/
You ask about standard of care in stage 3a. Certainly you know by reading other content on previous threads that stage 3a has a spectrum of standard practices that make the term "standard of care" difficult to use. But it seems the 2 doctors recommend the same treatment?
Reply # - August 21, 2012, 01:13 PM
Reply To: standard of care/treatment at different facilities
Did you go to UPenn for a second opinion?
My husband talked with an MD Anderson(Houston) oncologist before I got treated because he researched it back in '03 as no. 1 or 2 center for lung CA. (Memorial Sloan as the other one. I wish we'd known about GRACE/ Dr West back then. The onco. agreed with the treatment plan locally, San Jose, CA so I went ahead. I am so lucky that my local oncologist chose the chemo combination I got and was very effective. As long as the treatment is comparable or the same it make sense to be local and have family/friends support. I ended up in Houston later , it was isolating but necessary evil and glad for the experience but having a lot of support and expertise/excellent reputation is ideal.
Good luck to your Mom and all you caregivers/supporters. God bless.
Reply # - August 21, 2012, 02:52 PM
Reply To: standard of care/treatment at different facilities
I agree that getting a second opinion from a doctor you have confidence in at a major cancer center who specializes in lung cancer is all you need to judge whether you are making treatment decisions that are optimized for your situation. Often these consulting doctors will continue to work with your local oncologist as your treatment continues. You can also ask your local oncologist to make inquiries on your behalf.
Being hooked up to chemo and having scans, blood work, and other testing done close to home is the best way to go. It's the mechanics of the process, not the art.
There is a lot of ground to cover in initial discussions about treatment options and side effect management strategies. As you and your dr talk, things will come into better focus and you'll be able to ask questions that help. My local onc and I chose carboplatin over cisplatin to minimize risk of hearing loss and neruopathy (I already had tinnitus). Type both drug names as key words in the GRACE search engine and you will see many dr blogs and patient posts about effectiveness + sympt
I think Dr. Weiss had a blog about questions to ask that are generic but will prompt the oncologist to focus on important topics -- there are so many nuances and considerations! If your head isn't already spinning (and I know it is) it will be!
There is time to cover all the bases and make the right decisions. Be ready to ask, "Is there anything i should be asking that I haven't thought of?" and, I think Dr. Weiss and others would also suggest, "If this were your mother or sister, what would you recommend?"
The important thing is open dialogue. When you've run out of questions on the spot but come up with more at home, write them down + email them to your doctor's office. And the clinic nurses can be every bit as informative because they are there with the patients as the treatment is administered and know what to look out for.
Good luck to you. Keep us posted!
Reply # - August 21, 2012, 03:27 PM
Reply To: standard of care/treatment at different facilities
Update: First...I apologize for the grammar at times.. I've been writing so much and doing so much at the same time, at work taking and making 'non-work' calls but when else even under 'normal' circumstances can one get this stuff done?!?! Anyway.. yes we seeked out UPenn at the very least to seek a '2nd' opinion or at the very least an affirmation/confirmation of her case and the plan going forward. Actually the thoracic surgeon thought it was a very good idea before we told him where we were seeking it from and he stated a 2nd opinion is good from "pretty much" any institution. We knew he was a Penn grad and Penn is 'fairly close' & from what I knew prior and found out from many sources is well respected or at the least near the top..don't know for sure.
Both groups of doctors have agreed that my mother should be a candidate for the "tri-modality' approach for Stage 3A. The 1.9cm primary lung nodule is located in upper left lung, limited meditasinal lymph node involvement in two contiguous nodes near the aorta that were described as non-bulky. I would definitely like to keep her closer to home & she does also but it would still require to keep her at a 'house of care type arrangement which has already been established. It really scares me alot as the oncologist and or a member of his department/group did not even have her as selecting chemo as a treatment when we never stated otherwise or even indicated otherwise. He medical record as of late last week read that "we were to decide and get back with their department before they were going to proceed with establishing a regimen and or actually scheduling her treatment. We had the cancer clinic with the cancer team on 8/02/12 and told them and had the chemo port surgery on 08/08/12? I mean..am I overreacting to this type of blunder/overlook??
If it is a team approach between departments and we told them to schedule the port procedure on 08/02/12 how does a team of medical professionals overlook this? Sorry..
Reply # - August 21, 2012, 04:32 PM
Reply To: standard of care/treatment at different facilities
I'm not sure what you're saying was overlooked. Were they waiting for the port surgery to be completed before actually scheduling the treatment? Were there choices to be made about which chemo drugs to use? Perhaps there was a misunderstanding between you/your mother and the medical staff about whether you had made a final decision about treatment.
In any event, I think that no matter where your mother receives her medical care you need to be an active participant and stay on top of everything. Ask questions, not only about the medical questions about proper treatment, etc., but also the "nuts and bolts" issues such as scheduling. Double check to make sure everyone is on the same page. Medical providers can be very busy, so you can avoid oversights by keeping in close contact.
JimC
Forum moderator
Reply # - August 21, 2012, 07:57 PM
Reply To: standard of care/treatment at different facilities
You've covered a lot of points that are competing with each other, in that it's hard to follow your exact concerns. I'd like to be able to help answer a limited, focused question, if you can distill it down to that.
If you check on the summary content about managing stage IIIA NSCLC, you'll see that about the only expert consensus that there is centers around the idea that there isn't just one approach, and that a team-based multidisciplinary approach is optimal.
I can't speak to why the first oncologist didn't ask about hearing loss. If cisplatin wasn't the agent being considered there, it isn't as critical of an issue. Alternatively, it might not have been asked because it was just overlooked.
-Dr. West
Reply # - August 22, 2012, 07:16 AM
Reply To: standard of care/treatment at different facilities
Hello again. We were at their cancer clinic which involved the thoracic surgeon, oncologist, & the radiologist on 08/02. It was the follow up to the attempted thoractonomy on 7/23.
We discussed with each team member the different plans/options, potential advantages, disadvantages, risks and such and actual anticipated timeline and when the chemo and radiation would commence whether surgery was to be attempted or not during the"cancer clinic" on 08/02/12.
We decided prior to leaving the exam office that we were going to pursue the tri modality approach. The oncologist came in last after the other two..he left the exam room & stated that he was going to speak with the thoracic surgeon and that the T.S. would be in to see us before we left for the day. The thoracic surgeon came back into the exam room and stated they are going with the tri-modality and will be scheduling the chemo port for 08/08/12. We had the chemo port completed on 08/08/ & her 'mapping' for radiology completed on 08/07.
I realize they are likely very busy but... how does the oncologist miss something like this...which is...when I called his office on 08/17/12 the notes in her medical record read that we were still deciding whether to have ANY chemo treatment?! We had the radiology schedule complete on 08/10 & she is scheduled to start on 08/28/12. They wanted both chemo & rad to start together. Also this same oncologist apparently missed my mother's documented hearing issue which includes tinnanatus(sp?). The medical records and audiogram/hearing tests were completed in the same health system that the oncologist works at. The one drug that he included in the planned regimen was cisplatin which from my very limited knowleage has potential deafness side effects. I do not even begin to know much about all of this.. though I am beginning to 'learn' but since the other oncologist pointed this out very quickly & ordered an audiogram as a benchmark prior to any treatment. should we seek trmnt. elsew
Reply # - August 22, 2012, 09:06 AM
Reply To: standard of care/treatment at different facilities
dmk, that's a decision you and your mom will have to make. Like noted in Dr. Weiss' blog a second opinion doctors can work with the local group to come up with the best treatment. From what you've said about the oversite I'd say that is an excellent example of why the two teams at different places make a more solid plan.
Jim said in his second pp that you being an active participant is also a great advantage in helping to make sure everything is covered. You're doing that now.
Dr. West says in #3 of the forum guidelines, "Please don’t ask what you “should” do. We can provide general information, and we’re delighted to do it, but we can’t provide medical advice to people who aren’t our patients. We could get into legal trouble, and we don’t want to try to replace the local team that has access to more relevant details, such as scans, labs, and the ability to evaluate a person directly. “Should” is the one word on the forum that is a trigger that we’re crossing a line."
All best moving forward,
Janine
forum moderator
Reply # - August 22, 2012, 07:31 PM
Reply To: standard of care/treatment at different facilities
I can't speak to how or why this got missed. It is absolutely true that potential damage in hearing is something that can happen with cisplatin, and it's definitely appropriate to ask about this.
I suppose one of the downsides of having a multi-disciplinary team is that there is a capacity for miscommunication/missed communication. It can happen when there are many moving parts, but it's obviously not great.
-Dr. West