kristinj Posted August 30, 2010 Share Posted August 30, 2010 Hello Friends, We are in the earliest part of our LC process and are desperately trying to get our appointments scheduled. Do you have any help tips for how to get appts. to see the specialists any quicker? We are located near several excellent Cancer hospitals, but cannot seem to get appointments with speed- end of the month for the first one. We will meet with the local Onco. this week, but were hoping for a consult or two before starting treatment. Also, if my Dad begins his treatment with the local Dr., can that be tweaked based on the rec. from the Univ. hosp. specialists or should we wait until we consult with several specialists? Is it worth going to Sloan Kettering? We just want to get the best doctors to recommend the best protocol- of course, so does everyone else! HELP!! Thanks! Kristin J. Dad- age 59 NSCLC 3B- waiting for PET results...fingers crossed. Quote Link to comment Share on other sites More sharing options...
Joppette Posted August 30, 2010 Share Posted August 30, 2010 Kristin, any lung cancer diagnosis is shocking and upsetting. Trust me when I got it, I was like no way, and didn't trust the doctors telling me that they wanted to remove my lung. I immediately flew to mayo clinic for a 2nd option and they agreed! So I had my lung removed, had adjunct chemo, and am doing fine today. I wish the best for you. Go with your guts. Judy in MI Quote Link to comment Share on other sites More sharing options...
ts Posted August 30, 2010 Share Posted August 30, 2010 Somewhere along the way, someone wiser than me said to take your time making the first decision. There are cases where that first treatment decision can alter what is possible in the future. Since I was pretty much on my own with this as far as the decisions went, I went with my gut and agreed to surgery without a 2nd opinion. It still took two months from ER to surgery. It is possible that an early 2nd opinion might have determined I was not a good candidate for surgery. Would I be in a better place now had I not had surgery? We will never know. I could be worse. There are a few trials that don't enroll previously treated patients. If he's inclined to do a trial, this may be of interest. Otherwise, there area a lot of pretty standard treatments to choose from based on stage, type, patient status, and doctor's preference. Has your Dad had a biopsy to confirm the diagnosis and type? Just to push it, my friend who was dx the year before me (oh, coincidence) was told she was not a surgery candidate from her local doc, and that she should get her affairs in order. She fled to a bigger place and larger cancer center, had chemo, surgery (!) and a bit more chemo. Coming on to her 3rd anniversary. I don't have much more info from her, but it shows you how two opinions varied greatly. Good luck, again. Quote Link to comment Share on other sites More sharing options...
recce101 Posted August 30, 2010 Share Posted August 30, 2010 ...cannot seem to get appointments with speed - end of the month for the first one... If you mean the end of September, that does seem like a long time. If you haven't been to cancergrace.org yet, what you might do is gather up as much detail as you can (specific subtype of NSCLC, scan results, results of any molecular testing for EGFR mutation, recommendations of the local oncologist, how your dad is feeling right now, etc.) and post it for the GRACE docs to review. Of course they can't give actual medical advice to someone who's not their patient, but they can tell you whether the recommended treatment seems appropriate for your dad's situation and what other treatments might be considered. Unless there's some controversy over staging or whether surgery is an option (it's usually not with IIIb), there are a limited number of FDA-approved, evidence-based first-line treatments for NSCLC IIIb, and the difference between them has more to do with side effect profiles and individual oncologist preferences than with any measurable difference in outcomes. Later, when and if second-line or third-line treatments are being considered or the possibility of a clinical trial arises, there's more room for differing approaches and a second opinion might be useful then if it's not feasible to get one now. I'm not saying a second opinion should not be pursued now, only that the possible benefit (assuming your dad's case is a fairly straightforward IIIb) needs to be weighed against the resulting delay in starting treatment. If it wouldn't delay the start of treatment more than a couple or so weeks, then getting a second opinion now might be useful and provide some peace of mind. On your other question, whether treatment could be started locally and tweaked later based on the input of a lung cancer specialist, that's a good question for your local oncologist when you see him this week. You could also get his take on how long treatment might be safely delayed while getting other consultations. Most oncologists worth their salt encourage second opinions, but if he expresses concern about the resulting delay in treatment, I would consider that carefully. Hope to see you at GRACE! Aloha, Ned Quote Link to comment Share on other sites More sharing options...
recce101 Posted August 30, 2010 Share Posted August 30, 2010 One other thing. I just read the response by ts, and want you to know that I agree with everything she said. I think the main difference in our posts is one of focus and emphasis. Some good reading material: http://cancergrace.org/lung/2010/04/05/ ... ng-cancer/ http://cancergrace.org/lung/2010/04/16/ ... ced-nsclc/ http://cancergrace.org/lung/2010/08/22/ ... iii-nsclc/ Ned Quote Link to comment Share on other sites More sharing options...
kristinj Posted August 30, 2010 Author Share Posted August 30, 2010 Dear Judi, TS, and Ned, Thank you so much for your thoughtful responses. I am beginning to think of this forum as a real support and place to find help from quite informed people. We have 2 appts. in one day this Thursday and will find out the results of the PET scan to determine the spread of my Dad's cancer- hopefully, it is only in the large mass that we already are aware of...and will also hear of treatment options. The first appointment is with the local oncologist and the second is Fox Chase Cancer Center in Philadelphia- all on the same day! So, we will get to hear several options and possible clinical trials before we schedule any treatments. Thank you again. This really means so much to me. K,J. Quote Link to comment Share on other sites More sharing options...
ginnyde Posted August 31, 2010 Share Posted August 31, 2010 Kristin, My husband was treated at Fox Chase (Dr. Roger Cohen) and at Penn, (neurosurgeon Dr. Kevin Judy.) While I am a very strong proponent of multiple opinions, a sense of the dr. being the right one is vitally important. I currently have 3 friends with lc. One is being treated at Abington Hospital, one at Doylestown Hospital and the other one at Fox Chase. All of them feel very comfortable with where they are being treated and, thank God, all are doing well. Keep us posted. Quote Link to comment Share on other sites More sharing options...
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