lewellen9581 Posted November 30, 2006 Share Posted November 30, 2006 First of all I would like to say this site is awesome. Although I so wish there wasnt a need for this site and that me or you had never had to look for it. My Daddy was diagnosed 2 weeks ago with Non-Small Cell Lung Cancer with METS to the bones and Liver. I am having a hard time getting questions answered from his Oncologist, which is annoying me. We have had 1 appt with him, and Daddy was in soooo much pain that day I couldnt hang out to ask questions. Now when I call I have to talk to the Nurse. I dont like this because I have so many questions. I am going to ask a few of my questions on here. #1~His bone cancer is in both hips and lower spine. He is in pain most of the time, and at the very best, he is just uncomfortable to lay or sit, and his legs are too weak to stand. He is also unable to bend, so he cant dress himself. I called and asked the nurse about the possibility of doing radiation to help with the pain. The doc said, with as many spots as he has, he is afraid the radiation would be at toxic levels. I think they should attempt maybe just one spot at a time? #2~Does the PET scan check for Brain Cancer? If not, should I request one? I think so, but if he is having no symptoms, I sont want to give him anything else to worry about. Quote Link to comment Share on other sites More sharing options...
Treebywater Posted November 30, 2006 Share Posted November 30, 2006 It seems that Mom did a separate test for the brain scan, but I'm not going to swear to that. YES, I think radiating just an area or two at a time to relieve the pain your Dad is in is a good idea. DO ask that question of the doctor. I'm no expert, so I'm not sure exactly waht the doc may mean by what he is saying, but I know that not all of my Mom's mets were radiated--just the ones causing her the most pain at the time. I would also encourage you to possibly seek a second opinion if you are not satisfied with the care your Dad is receiving or the answers you are getting. I'm sorry you've had to find us, but glad to meet you. Let us support you! Quote Link to comment Share on other sites More sharing options...
john Posted November 30, 2006 Share Posted November 30, 2006 1) Zometa is often given for bone mets. cyberknife might be an option 2) PETs don't do well for brain mets. MRI with triple-dose gadoteridol is the best I believe I am not a Dr. so I would ask your current Dr or get a 2nd opinion at a good cancer center, such as one designated by the NCI Good luck. I think ask the experts forum on here is back up so Dr West may offer answers Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted November 30, 2006 Share Posted November 30, 2006 Hello and welcome lewellen I am sorry about your Dads diagnosis but glad you found this site. You have some valid questions here. If you and your Dad are not happy with this oncologist, please take John's advice and seek a 2nd opinion with a cancer center or even simply a different oncologist. Keep us posted here and let us know how we can help, My best to you and your Dad, Chris Quote Link to comment Share on other sites More sharing options...
dchurchi Posted November 30, 2006 Share Posted November 30, 2006 My Husband had an MRI to the brain to check for mets. If your Dr. is not willing to take the time to answer your questions, especailly at this time when everything is so new and scary I say get another Dr.!!!! Quote Link to comment Share on other sites More sharing options...
marym Posted November 30, 2006 Share Posted November 30, 2006 Hi , There is a brain PET that can be done - but I did not have the brain done as part of a standard PET. Ask for an brain MRI and a spine MRI. THat will let them see with specitivity what is there. I would think they could see what must be causing the most pain and go for radiation - perhaps to one or two sites. You might ask to see a radiology oncologist or perhaps look for another thoraxic oncologist. Mary Quote Link to comment Share on other sites More sharing options...
Nick C Posted November 30, 2006 Share Posted November 30, 2006 MRI definitely for brain in my experience with Mom. And definitely go see another doc/hospital. A different doctor may have a thought. I'm sorry you had occassion to find the site, but since you did, welcome. Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted November 30, 2006 Share Posted November 30, 2006 Go for another opinion. Your Dad needs help with his pain. Radiation seems the standard course of action to the most painful areas. (palliation) Glad you found us. We all want to help. Cindi o'h Quote Link to comment Share on other sites More sharing options...
TamHol Posted November 30, 2006 Share Posted November 30, 2006 First of all ............ In my experience the nurses are the people who will give you the true answers. Also they are the ones that actually deal with the bedside manner portion and are very accomidating compaired to the doctor. I know you want more education, but sometimes experience and working knowledge is better information. But if you don't like either of them and they won't respond to the natural urging of answering your questions .... go elsewhere. Tammy Quote Link to comment Share on other sites More sharing options...
RandyW Posted November 30, 2006 Share Posted November 30, 2006 If you have not checked your mailbox Please do. If you have no problem Not sure where to start but pain management should be top priority in order to get a second opinion. We met in Chat And I hope something is being done by Medical personnel for pain. I know how hard you have been advoccating and that is important to do for Dad. You are doing everything you can and Dad is doing what he can. Now it s the Medical fields turn. I know thepainis so bad that he can not get out for a second opinion and that is why he needs to get pain under control, and that you are doing everything you can. Sending prayers for you and Dad tonite! Keep us posted when you can. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted November 30, 2006 Share Posted November 30, 2006 The pain should be managed and those specific tumors that are causing bone pain should be considered for radiation. Don Quote Link to comment Share on other sites More sharing options...
lewellen9581 Posted December 1, 2006 Author Share Posted December 1, 2006 Thanks so much for your replies. Daddy is switching to another clini that will be easier for him to get to. It is the same DR just a different office. The nurs there is super great! She talked to me forever tody and kept praising me for doing a good job. The other nurse acted as if I was more of a bother than anything else. She was extremly unfriendly. I have called severaly times in the past few days trying to get questions answered and other things in order. My family is Military, and we are currently stationed in Japan. My two kids and I have been home with my Daddy since October 24th. We are going back to Japan next week to stay until January 5th. Some of my mothers family (they are divorced) is giving me a hard time about "abandoning" my Daddy right now. His brother and a few frinds havebeenlined up to help and ARE coming back. I just wish ppl would inderstand the emotional and physical toll this has taken on me, and instead of passing judgement offer to help. I am 6 months pregnant with a 2 and 6 year old. Most days Daddy feels too bad to have the kids around, and the possibility of getting a germ from one of them frightens me because I know he will have to miss chemo then. I havent spent any time with my children since I have been hre, and I miss my husband. I need someone to lean on for a few weeks. Sorry I didn mean for this to turn into a rant, but I really got my feelings hurt today. I am trying 24 hours a day to do everything I can to get him better, and keep him comfortable. Quote Link to comment Share on other sites More sharing options...
RandyW Posted December 1, 2006 Share Posted December 1, 2006 lewellen, When the germs become worrisome, would it hurt to possibly get masks at local drugstore? Less germs more fun I think. and tehy are not expensive. Glad to hear things are coming around. Make sure Doctors know about your location situation and can you call for Info whenever need be? Wortth looking into. Good Luck, Don't let anyone put you down for not doing your job. You are doing fantastic!!!! Prayers and thoughts. Quote Link to comment Share on other sites More sharing options...
Ladyintheglen Posted December 4, 2006 Share Posted December 4, 2006 lewellen, Don't let anyone make you feel guilty. You are doing the very best you can! You should not have to do this alone. When I was going through this I found that the ones who tried to act like I wasn't doing everything humanly possible were the ones that wanted to do the minimal amount possible and then pass judgement onto me. Don't let them do this to you. I know that this statement is easier said than done but trust me...no one has the right to pass judgement on you. You are doing a great job and I am sending you a pat on the back. Cheryl Quote Link to comment Share on other sites More sharing options...
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