bphyllis Posted January 12, 2004 Share Posted January 12, 2004 Hi, I have applied for radiofrequency ablation at the University of MS with Dr. Sewell. My oncologist at the University of Chicago has the referral form now and I am on pins and needles. I just don't think I can handle bad news right now. I read my CT scans. I have two tumors about 1.5 cms. in the right lung and one 1.5 in the left lung. They should not be on anything vital. One is under my collar bone and the other two are in the lower portion of the lungs. I have two nodules on my trachea which I hope I can have surgery to remove. My throat surgeon is out of town right now until the 24th unfortunately. I just now found out about the nodules and this thalidomide I am taking makes it really hard to think straight. My oncologist are very much against rfa because they feel that it is a local treatment only and that other tumors will emerge. But rfa should be able to hopefully take care of those. I know the CPT-11 is not really doing anything. It is the thalidomide that they are testing and I am not so sure that it is shrinking these tumors because I can still feel them. I am just scared that they will turn me down for rfa. I know once if I have this procedure I may not be able to do anymore clinical trials, but I am willing to take that chance. When I went to Loyolla for a second opinion that doctor was so brutal telling me I should not have lived as long as I have I am almost too scared to try to get second opinions these days. So it took a lot just to apply for this procedure. Thanks. Quote Link to comment Share on other sites More sharing options...
ginnyde Posted January 12, 2004 Share Posted January 12, 2004 Bphyllis, I don't have any information just some words to say don't give up hope. As the doctor told my husband this a.m. if the Iressa doesn't work 'the drs. shelf is not empty'. Each day brings a chance for new drugs. Each day is an opportunity to be happy. You have a strong support group here. Ginny Quote Link to comment Share on other sites More sharing options...
DeanCarl Posted January 12, 2004 Share Posted January 12, 2004 I don't know what to say about the waiting. For me it's the hardest part of dealing with anything, let alone a major disease. I just try to get my mind focused on something else. It's like trying NOT to think about a zebra. Soon as you try not to think about a zebra ... POING! ... there's a zebra sitting in your brain with black stripes, donkey ears and big ol' smile on his face saying, "naner naner naner" at you. So the trick is to not try to not think about a zebra ... but to think about an elephant instead. Big ol' grey elephant. Big floppy ears and REALY big trunks. Poor ol' zebra doesn't stand a chance. As for that dinko doctor. Where the heck does he get off saying you shouldn't have lived as long as you did?! It's obvious you da** well SHOULD have lived this long ... because you HAVE! And, from the sound of it, you've got some living yet to do. If that ever happens to you again stick it right back in the joker's face! Maybe if enough of us start doing that these so called "experts" might figure out they aren't as smart as they think they are. Dean Quote Link to comment Share on other sites More sharing options...
Snowflake Posted January 13, 2004 Share Posted January 13, 2004 Oh man, I get to follow Andy Landers! Encouragement and advice.... Lessee...about that doctor who says you shouldn't have lived this long - maybe you can point out that no matter HOW LONG he is a doctor, he will always be in PRACTICE. It must really suck to go through how many years of school and real-life situations and still be PRACTICING...wonder how long before he gets it right... Weigh the advice with the experts, and throw in your OWN opinion. Most of the people on the board will say that this battle is a lot of attitude to go with a lot of trials... Heck, if there were any one PROVEN "cure" for lung cancer, none of us would be here! ANYWAY, what I was getting at is that YOU need to believe you are doing the right thing. If you have looked at the options given to you and your heart is YELLING for you to seek an opinion elsewhere, go for the opinion, weigh the NEW options and go with your heart. You have to BELIEVE in what you are doing.... Believe in yourself and believe you are NOT going to give in to some dumb doctor's idea of when you should have died! I swear, some of 'em need a refresher course in bedside MANNERS! Bah! Find someone you trust, it's very, very important. I have specialists and oncologists, but bounce all the options off my GP. She's the hub in my wheel of treatment - were it not for her, I'm sure I'd be in a far different place right now. I trust her judgment and know that she wants to keep me around for a while. (I plan on sending her kids to college! LOL) Doctors should answer your questions when you ask them and volunteer information you need. Find some you are satisfied with to join you in the fight of your life! Best of everything to you, Becky aka Snowflake Quote Link to comment Share on other sites More sharing options...
lilyjohn Posted January 13, 2004 Share Posted January 13, 2004 I'm in agreement with Dean. Throw it right back at anyone who says that to you. I've seen Dean say before that you ask them where they got their God Licence. That's the best way to look at that kind of looser. I'm a firm believer that that attitude from doctors is in many ways just as dangerous as cancer and as cruel. If they spent as much time trying to help keep a patient's attitude positive and looking at some of the other things that help in the fight against cancer they could do a lot more good than harm. God has the only say about how long any of us should be here, that so called doctor included!!!!!!!!!!! Just stay positive and keep fighting. Do all you can to help yourself and avoid loosers like that. Come here for support whenever you need it. You'll get a lot more here than from someone like that who writes you off from the beginning. I don't know why it is but there are a lot of doctors who can't accept the idea that they do not know everything and there are other things available to try besides their specialty. Kind of like the way they are about nutrition and exercise and other alternative treatments. All of your life they tell you to eat right, exercise and keep a good attitude and less stress. Mention the word "cancer" and they do a backflip away from all of the advice that they gave before. Is it just me or does something sound wrong with that? Just remember that there are some medications that doctors don't give and you can get those here. They are faith, hope and above all love. The best combination of medicines you can find anywhere. Hang in there and keep us posted on your progress. Lillian Quote Link to comment Share on other sites More sharing options...
LindaMRG Posted January 13, 2004 Share Posted January 13, 2004 If for some reason the RFA doesnt work out, ask about IMRT (intense modulated radiation therapy). High dose radiation targeting tumor or node sparing surrounding tissue so there are little or no side effects. Might be worth just asking onc about. Quote Link to comment Share on other sites More sharing options...
jane Posted January 13, 2004 Share Posted January 13, 2004 Hang in there, you obviously SHOULD be living this long and longer!!! My sister's first oncologist "gave" her a projected lifespan, and she has FAR outlived it, and nicely the vast majority of the time. Notice I said "first" oncologist. She quickly got another who has a much more positive attitude. We are also very interested in rfa, and are communicating with three places, including the one in Jackson MS. Shane (my sister) has had her ups and downs, as you all know so well. But each time she has gotten not-so-good news, another plan of attack comes along and things turn upward. So, like everyone else says, keep yourself thinking positive. I wish you the best..... Quote Link to comment Share on other sites More sharing options...
karen335 Posted January 14, 2004 Share Posted January 14, 2004 Bphyllis, Please keep us posted on the RFA. I am curios about this treatment. I was not a candidate for surgery. According to my pulmonary doctor, I had a broncoscopy the end of October he said he couldn't find a tumor and the biopsy came back negative. Now my onc is wanting to do more chemo, she says the tumor and cancer still there. I am really confused. Will your insurance pay for the treatment. Please post the details. Thank you and prayers for you and your family... You can PM me if you want to. God Bless Karen Quote Link to comment Share on other sites More sharing options...
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