TamD Posted April 30, 2004 Share Posted April 30, 2004 Hi everyone. I have things to get off my chest and this is the place to do it. My mom has nsc with mets to brain. She has been going through chemo with a set back due to low platelet count. She went back a couple of weeks ago for her treatment and explained to her nurse that she has been very short of breath. They told her that she had fluid on her lungs and that is causing the shortness of breath, she could get it drained if she wanted to or if it got worse. So, after watching her struggle to even carry on a converstation I had enough and called her doctor to explain just how bad it is, and they said she should go get it drained. Well my mom was very afraid to get this done and it took her a day and a half to decide to go get it done. Yesterday we went to the local hospital (which is not were she goes to get chemo) and they ran a lot of tests. There was no fluid on her lungs. They did the c-scan two different ways and nothing showed. It did show that her tumor is cutting off the blood supply to her lung and is compressing her wind pipe. They said that they did not feel comfortable giving her any other advice as they are not her doctors and don't know her case. WHich I am fine with. We had a great experience at this hospital. So he suggested she go home,call her onc. and get her in. (She has a chemo appt this Thursday May 6) This doctor said do not wait until Thursday get in as soon as you can and get some answers to what is going on. She called when she got home and they said, we will see you Thursday. As I was not there I could not say, no get in sooner. So she said ok. I don't understand. Why did one doc say fluid the other said no. One said get in noe the other said you can wait. Who and what do I believe. My mom just goes along with what her doctor tells her and does not stand up for herself. If it were up to me we would go to another doctor and get another opinion. SHe is on a clinical trial and it worked for awhile and now her tumor is growing agian. I am just so frusterated and I wish she would stand up for herself and say this is what I want done. Thanks for letting me vent. I am going to try and talk to her tonight and see what she thinks. Tammy Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted April 30, 2004 Share Posted April 30, 2004 CALL THAT DR.'S SERVICE NOW AND DEMAND SOMEONE SEE HER OR MEET YOU AT A HOSPITAL NOW. IF THEY WON'T, FIRE THEM TODAY AND GO TO A HOSPITAL FOR EMERGENCY TREATMENT AND GET ANOTHER ONC. no one, NO ONE should have to suffer like this with struggling to breathe. its her life were talking about. Quote Link to comment Share on other sites More sharing options...
Snowflake Posted April 30, 2004 Share Posted April 30, 2004 Nicely put, Shelly. There's the third opinion.... Either return to the same emergency room and explain that previous oncologist is no longer on case (even though S/HE may not be aware of it) OR go to the emergency room of the hospital the current oncologist works from OR go to the emergency room of a third hospital. From what you have stated, she is getting worse, not better. Be sure to have paperwork on the trial your mother is on so the doctors treating her know what is going on (no guarantee Dr. Dumb is going to share the information in a prudent manner) along with a general timeline of when the symptoms started to occur and how they've progressed. Go with your mother, don't let her go alone... Take care, Becky Quote Link to comment Share on other sites More sharing options...
Don Wood Posted April 30, 2004 Share Posted April 30, 2004 Good advice given here. Get your mom in to see the onc immediately. If you can't, you need to change doctors. Your mom is of a generation that let the doctor do all the leading. That does not apply today -- one has to take charge of one's own health. Good luck. Don Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted May 3, 2004 Share Posted May 3, 2004 What Don has said is very true. Have to be proactive today in cancer treatment, be aggressive about problems. Get second opinions. Get a second doctor if need be. Explain to your mom what she needs to tell you so you can get her to the doctor in a timely way. I'm sorry this has been so confusing, families don't need extra trials and tribulations at this time. Keep us posted. You're in our prayers, XOXOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
jamie Posted May 3, 2004 Share Posted May 3, 2004 Hi there, My dad also got some conflicting information, and also was not demanding answers. They originally told him that he was going to try chemo and radiation, and then hope for surgery, then he was not a canidate for surgery (4 weeks into the chemo and radiation) ,and now his doctors tell him that they will probably be removing his tumor! I can understand how fusterating this can be... My advice to you and your Mom is to edjucate yourself and demand a straight answer. I think doctors forget that they may know what is going on, but forget to keep you informed. I would keep on with her regular oncoligist, but schedule a meeting to get all the facts straight. That is what my Dad finally did, and when they realized that he was getting information that wasn't clear, they looked harder at his files to explain things to him, and finally were able to give him clearer info. But ask questions!!! My dad went 4 weeks thinking that he was going to get his tumor removed, and when they told him that he wasn't , he was let down. He should have asked in the first place. I hope everything goes well. Keep us posted. Jamie Quote Link to comment Share on other sites More sharing options...
Nushka Posted May 4, 2004 Share Posted May 4, 2004 I agree about the emergency room. Then one you went to sounds good to me. Tell them that your doc refused to treat your mother and that you are looking for another onc...meanwhile you want them to treat her. Then do get all the info you can...(her entire file) and take it with you to your new onc appointment. My daugther has bad asthma and I have witnessed what it is like to have trouble breathing. Blood supply cut off to the lung is serious business....don't wait. Nina Quote Link to comment Share on other sites More sharing options...
TamD Posted May 4, 2004 Author Share Posted May 4, 2004 Thanks to everyone for your input. I talked it over with my mom and although it made her upset to talk about it, I think she understands my point. She still is going to wait until Thursday to go (I can't force her to go elsewhere) to her regular chemo appt. She is going to talk to the doctor and see what he has to say. I did tell her that if I did not like what he says, she is going to someone else and get another opinion. So I guess we will see what happens. Thanks again, oh by the way, she finally got on this site. (My mom has never been on a computer) I showed how to do it, and she told me last night that she got on it for about an hour. YEAH! Now I just have to show her how to post questions... Tammy Quote Link to comment Share on other sites More sharing options...
Don Wood Posted May 4, 2004 Share Posted May 4, 2004 Welcome to Tammy's mom! We are all family here. Don Quote Link to comment Share on other sites More sharing options...
Melinda Posted May 5, 2004 Share Posted May 5, 2004 I second Don's welcome. Tammy, I am, too, of the opinion that a second opinion is something you want to get rather than wish you had gotten. Doctors, too, are only human, after all... Best of luck to both of you. Please keep us posted. Melinda Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.