Mouse5 Posted September 22, 2010 Share Posted September 22, 2010 Hi. I am looking for questions to ask on my Dad's first Oncology appointment next week. We got the results from my Dad's bronchoscopy today. He has NSCLC, Squamous, stage 4, bilateral. His PET scan was scheduled for last Friday, but the hospital screwed up and is rescheduled for September 24th, so we don't know if it has spread outside the lungs. He is sending Dad to a Cardiacthorasic surgeon, but said the chances of surgery are "slim to none, don't hold out hope for this option." He just wants to be 100% sure. I'm ok with that. Because Dad has cancer in both lungs, I guess radiation isn't likely either. So that leaves Chemo. I have been reading about his type of LC and Chemo, but I am not sure what questions I need to ask the Oncologist. I would really appreciate any questions you think are important to ask on his first visit, tips or any advice you could give me. I learned a lot from this site already and am greatful it's here. Thank you and keeping you all in prayer. Lisa Quote Link to comment Share on other sites More sharing options...
recce101 Posted September 22, 2010 Share Posted September 22, 2010 Hi, Lisa. It's good that you've been reading up on squamous cell lung cancer and the common treatments, and it's a very good idea to have a list of questions for the oncologist when you see him. Make sure you're ready to take notes, and in fact I'd recommend taking a small digital recorder to the session. I seriously doubt that the doctor would have any objection. Here are a few questions, and you've probably thought of most of them already: 1. What chemo agents are being recommended, and on what schedule? 2. What are the expected side effects of those drugs? 3. What complications/symptoms would merit a call to the oncology clinic, and who should you ask for? 4. If it's a weekend or holiday, what complications/symptoms would merit a visit to the ER? 5. When will a followup scan be scheduled? I would recommend that you not ask about prognosis. Any number you'd get at this point would be the average/median survival of a very large number of patients with a similar diagnosis at some point in the past, and there's a great amount of variation from one end to the other of that group. Since nobody knows how well your dad will respond to treatment, any number that you could get right now would be essentially meaningless. When I received my diagnosis, if I'd asked or if my onc had volunteered such "information" (which I didn't and he didn't), I'd have probably heard something like 10 or 12 months. Well, it's now been over 4 years, and I'm feeling better than at any time since this whole cancer thing started. You just never know. If you haven't visited the GRACE site and need some more reading material, type this in a Google window: site:cancergrace.org squamous Aloha, Ned Quote Link to comment Share on other sites More sharing options...
ts Posted September 22, 2010 Share Posted September 22, 2010 This list from Katie might be of help: viewtopic.php?f=50&t=41778 and these on Grace, for some discussion: http://cancergrace.org/forums/index.php ... 4.msg23062 and http://cancergrace.org/lung/2009/03/21/ ... ous-nsclc/ If you can read thru these, you'll be very well equipped. There are additional links at the bottom of the post by Dr. West. (Ned posted while I was getting you links.) Quote Link to comment Share on other sites More sharing options...
Joppette Posted September 22, 2010 Share Posted September 22, 2010 Hi Lisa, You already got great answers from ts and Ned. So I won't add anything there. Wishing you the best. I'm curious though that they told you stage IV but there is a question if it has spread. No matter what I wish you the best in helping Dad deal with this. Judy in MI Quote Link to comment Share on other sites More sharing options...
Bud Baker Posted September 22, 2010 Share Posted September 22, 2010 Best wishes for your dad and let us know how the onc visit goes. Quote Link to comment Share on other sites More sharing options...
ts Posted September 23, 2010 Share Posted September 23, 2010 Judy in MI - I think the dx of bilateral means both lungs, thus Stage IV? Yes, I see Lisa already said - "both lungs". Quote Link to comment Share on other sites More sharing options...
jaminkw Posted September 23, 2010 Share Posted September 23, 2010 Best of luck to your Dad and all your family. You've already heard from some of the most knowledgeable survivors on the site so I'll just say, we'll be waiting to hear about his appointment. Judy in KW Quote Link to comment Share on other sites More sharing options...
Mouse5 Posted September 26, 2010 Author Share Posted September 26, 2010 Thank you all for replying to my post. It's nice to know that there are caring people in the world who are willing to help a total stranger get through a difficult time. God Bless you! Dad had his PET scan yesterday and the doc said we should get the results on Monday. I'll keep you posted. With much appreciation, Lisa Quote Link to comment Share on other sites More sharing options...
fillise Posted September 26, 2010 Share Posted September 26, 2010 Lisa, Let us know what you find out from the PET scan. I'm sure you will have lots more questions and we will do our best to help answer them. Susan Quote Link to comment Share on other sites More sharing options...
Mouse5 Posted October 5, 2010 Author Share Posted October 5, 2010 Katie, Hi! Dad's scan showed that he has cancer in his hilum lymph nodes. Dad's one lung node has a score of 3 and the other 3.6 on how much gulcose the cancer used during the scan. Can't remember the name of the "scale" or what it's called. His scan was from his lower neck to his abdomen. I assumed that it was going to be a whole body scan. This journey is so frustrating, but I'm rolling with the punches. :/ What you created with this website is a God send! Thank you! Lisa Quote Link to comment Share on other sites More sharing options...
jaminkw Posted October 5, 2010 Share Posted October 5, 2010 I'm not an expert on the PET uptake scale but I've had a 6 before and am still kicking strong. Don't know anything about the location of your Dad's 3's but would be reassured by the low number. Judy in KW Quote Link to comment Share on other sites More sharing options...
jaminkw Posted October 5, 2010 Share Posted October 5, 2010 I'm not an expert on the PET uptake scale but I've had a 6 before and am still kicking strong. Don't know anything about the location of your Dad's 3's but would be reassured by the low number. Judy in KW Quote Link to comment Share on other sites More sharing options...
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