kdaru Posted October 25, 2004 Share Posted October 25, 2004 Saw an onc for the first time last Friday. He told us that b/c there were 3 lung lesions, it qualified as metastatic, and was thus stage IV. Shock to my Dad, he'd figured himself for stage I. Then he said my Dad wasn't even a candidate for radiation, becasue the field would be too big and too much of the lungs would be involved. Shock to me - I'd hoped Dad would have a shot at concurrent RT and chemo at least, even if he wasn't a surgical candidate. They're setting us up for a head CT tomorrow to check for brain mets (Dad has a pacemaker, can't do MRI), and planning a course of chemo with carboplatin/Taxol. Dad still feels great, thankfully. I'm hoping that maybe the chemo will kick it's butt, get rid of some of the hot spots, and make my Dad a candidate for XRT or surgery. We're going to see a rad onc tomorrow anyway, at my insistence - if Dad's not a candidate I want to hear it from the horse's mouth. I would like to talk with a surgeon too, just to find out what's out there. Hard to tell how he's taking it, he doesn't show a lot of emotion generally. Some days I'm doing good, do a lot of research; other days I just can't face it, and shop or watch TV instead. A couple of times he's said he's not sure about going through with the chemo: he's feeling great, so why? He's talking like he thinks he can coexist with this cancer for several years even without treatment. Myself, I don't think so; I'm afraid that if we do nothing, we'll miss our chance and regret it later. I thought about quoting the average survival time for untreated stage IV, but he can surf the web as well as I can, so I figure if he doesn't know he doesn't want to know. Sorry for the ramble, I'm still new at this. Any thoughts? Quote Link to comment Share on other sites More sharing options...
karenl Posted October 25, 2004 Share Posted October 25, 2004 Hi I think its great that you are checking and double-checking all your options. I know there was one case on this board of a patient who was initially diagnosed as stage IV, and it turned out to be (I think) two different types of lung cancer, both early stage. Anyway, she ended up being a surgical candidate - thank goodness they didn't just settle for the first opinion!! Obviously this is relatively rare, but you never know!! My Mum was asymptomatic at diagnosis over 15 months ago, and remains so. She has had pretty rigorous chemo, and has tolerated it very well. My recommendation to anyone who is in relatively good health is to have a go at it - if you find the side-effects intolerable, you can always stop treatment. Just my opinion. Whatever your father decides, I wish him well. He is lucky to have you for an advocate. Keep up the good work!! Karen Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted October 25, 2004 Share Posted October 25, 2004 Hi Kdaru, Welcome and sorry to hear about your dad. It's hard to take everything in at first for sure. Perfectly understandable how you and your father feel. Speaking only for my self I would do some type of treatment. What ever was available. Never know what will happen. They have come a long way with chemo and medications to offset any side effects. Of course everyone is different and reacts differently to treatment. Any decision your father makes should be respected. It is up to him. I've said from day one I was going to beat this and still feel this way to this day. But it's not going to go away by itself unless one does something about it. Take it one step at a time and one day at a time. Stay positive and focused. Learn as much as you can. Seeking a second opinion never hurts. Weigh all your options. Be pro-active. Hope this helps, My thoughts and prayers are with the both of you for the best of results. Peace, take care and God Bless. Rich Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted October 25, 2004 Share Posted October 25, 2004 It sounds as if you are on the right track. When he goes to the appointments that you set up for him, hopefully, the doctors will address the "do nothing" part, and that will take the burden off you. It is a gift to him to have you in his corner. And it is our gift to each other to come here for support. Thanks for posting, and keep coming back. Cindi o'h Quote Link to comment Share on other sites More sharing options...
luvmydog2 Posted October 25, 2004 Share Posted October 25, 2004 I just wanted to say welcome to the group. I am sorry that you had to come looking for us.Come visit us often. We will laugh with you or cry with you; whichever you need. If you want to scream, yell or just vent, we will let you do that also. There are plenty of people here who have beaten the odds. Whatever you need you will find it here. Come share a laugh with us in the Just For Laughs Forum. A good laugh will always make you feel better. We Chat on Tuesday and Wednesday...and any other time you need to. It is from 9 PM untill ??? EST. Does your dad have access to a computer? Perhaps he might like to join us. He will feel better about it. If not perhaps you can print some of the threads out for him. Either way, once again welcome. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted October 25, 2004 Share Posted October 25, 2004 Hi, and welcome! I'm not sure I understand the staging in your dad's case, but if you are getting other opinons, that is good. I, too, want to commend you for being such a good advocate for your dad. All patients need that. Let us know how we may help you. Don Quote Link to comment Share on other sites More sharing options...
Snowflake Posted October 25, 2004 Share Posted October 25, 2004 Katie, Your dad is probably still in a bit of shock. I posted a sticky in the newcomer forum regarding the thought process with diagnosis if you would like to read it... The news is enough to knock someone on their fanny, to say the least. When his brain becomes less numb, I'm sure he'll be open to suggestions and other opinions, but for a while, he's shell-shocked and won't hear much of anything you say... After that initial numbness wears off, he should decide to do what needs to be done to take care of business. Remember, you can suggest things, but ultimately, the choice is his. He may not choose to do anything medically to fight this beast...you can try to change his mind, but beyond that, it's up to him. Either way, he will need your support. Hope it all comes out right in the end, Becky Quote Link to comment Share on other sites More sharing options...
Fay A. Posted October 25, 2004 Share Posted October 25, 2004 My suggestion is that you find another Medical Oncologist...one who is more interested in helping your Father. I shared a room in the hospital with a lady who was in her mid 70s, who had a pacemaker. She had had an upper lung Lobectomy and lower lung wedge resections. She ran circles around me as far as recovery goes. (When things were rough I would tell myself "...if she can to this I can do this.) Has your Father had Pulmonary Function Tests to determine how well he would do if part of the lung were removed? Have you checked into Radio Frequency Ablation to the three lung tumors? Please don't accept that there is nothing much that can be done, especially if this attitude is based upon your Father's age. Not a good enough reason to not treat aggressively if that is what your Father wants. Good luck and best wishes. If you tell us where you are maybe we come up with some names of other docs and other cancer centers that might be more inclined to work harder for your Dad. Quote Link to comment Share on other sites More sharing options...
john Posted October 25, 2004 Share Posted October 25, 2004 I agree with Karen and Fay. As Karen pointed out, maybe all the lesions are not the same type or maybe not all malignant. Has a biopsy and/or PET scan been done? Fay also has a good point about RFA. Something to check out it might not be possible but you won't know unless you find ask a qualified doc If he doesnt smoke it may be BAC this *tends* to stay in the lungs, but I think it may look different than lesions on a scan - Not positive about this. Non-smokers sometimes respond very well to Iressa and maybe Tarceva. Multiple lung nodules are more common in metastasis to the lungs (so it might not be the primary) Multiple pulmonary nodules are most commonly encountered in patients with metastatic disease to the lungs. Other less commonly encountered diseases that present as multiple pulmonary nodules include infections, arteriovenous malformations, Wegener's granulomatosis, and lymphoma. The evaluation and management of the patient with multiple pulmonary nodules are usually guided by the history, physical examination, and laboratory findings. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted October 25, 2004 Share Posted October 25, 2004 John, BAC comes in a number of forms. I've had solid tumors, non-solid tumors, semi-solid tumors all show up in the same lung at the same time. Some are mucinous, some are not. BAC is one weird disease. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted October 25, 2004 Share Posted October 25, 2004 Hi Katie and WELCOME! I'm so sorry that you are having to deal with this monster, but I sure am glad you found this website. There are people here who will do everything they can to help you. I agree with the others here that, if you have given us all the info, a second opinion sounds like a very good idea. Are the 3 lung lesions in the same lung? If they are, it's my understanding that would not be considered stage iv. Do you know the size of the lesions? I have heard of several who were not able to have radiation because of the location of the tumors, but again, that's a decision that would definitely warrant a second opinion. I'm glad to hear that you are getting a second opinion from the radiation onc. Best of luck and please keep us posted. God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted October 28, 2004 Share Posted October 28, 2004 Actually, 3 lesions even if in the same lung is considered stage IV. I'm not sure of the wisdom of performing RFA on 3 seperate lung lesions, if you shop hard enough you could probably find someone willing to try it. That still doesn't necessarily mean it's the right thing to do..... Quote Link to comment Share on other sites More sharing options...
nadri Posted October 29, 2004 Share Posted October 29, 2004 Katie So sorry to hear about your Dad's dx, this is the right place to ask for support and advice. They are all the nicest and most compassionate people I have ever come accross. Best wishes Hi Dr Joe Thank-you very much for the time and interest you show in this board it is greatly appreciated. I always look for your posts because they alway seem to clarify areas I don't understand. Could you expand on your above comments about RFA for this. I would like to understand your reasons for saying this and some context for this. Also I have a query. In the UK on TV they recently had a programme showing a breast cancer sugery. In it the women in question had 4 tumors 2 in both breasts. The surgeon didn't say oh she's stage IV, just she must have some inbuilt weakness which means she grows tumors in her breasts. Is it not possible that someone could have a similar weakness in their lung, causing more than one tumor? Thanks Sarah Quote Link to comment Share on other sites More sharing options...
J.C. Posted October 29, 2004 Share Posted October 29, 2004 Katie, I just want to welcome you, can't help but so many on this board could that I will leave that to them. Sorry you had to reach for this board, but you are on the right one. Hugs J.C. Quote Link to comment Share on other sites More sharing options...
Gamblerpl Posted October 30, 2004 Share Posted October 30, 2004 Hi Katie, I'm sorry to hear your Dad is having such a hard time finding care that you feel is appropriate for him. I'm new at this too, and it's a very scary time for us with the "beast" and our family members and loved ones. Please get a second opinion. My first Dr.s scared me to death... made it sound like I was on my death bed and that I couldn't survive surgery, that NSCLC was not treatable, and I needed to talk to my Maker and look at clinical trials. I referred myself to another Dr and he made all the difference.. I am a canidate for surgery, I just had to build up my lungs. So get another opinion, it can change the whole scope of things for him and you. I wish you the best and will keep you and your Dad in my prayers. Hugs and prayers, Paula Quote Link to comment Share on other sites More sharing options...
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