Guest Jeannette Posted June 8, 2004 Share Posted June 8, 2004 ... and I'm not the one who's sick. Pardon me for just jumping in here. I'm new on the board. My mother was told she had pneumonia or asthma on 1/13 and was given an x-ray. She was diagnosed with lung cancer on 2/4/04, and it seems like every step we have taken since then has been so extremely S.....L......O.......W. The diagnosis was made from an CAT scan on 1/31. To check for lymph node involvement, she had to wait until 2/21 for a PET. She saw a pulmonary specialist on 3/1 who confirmed the initial diagnosis of pneumonia and lung cancer and recommended a mediastinoscopy since the PET scan was inconclusive. WAIT another 23 days for the mediastinoscopy to find out that the cancer is in the midline lymph nodes and the tumor is definitely inoperable. Radiation treatments recommended. See Onc. on 4/8, begin 7 weeks of radiation on 4/12. And we are WAITing yet again. Now we have to wait another 4 weeks before an xray or scan to determine the results of the radiation treatments??!!! I know it all takes time, but I'm so tired. And my work is suffering. And I guess I just needed to rant a little. I just want to know what's going on, and the doctors just seem to be so closed mouth about everything. All I know right now is she has stage III adenocarcinoma (they won't say whether it's A or B - they look at you like you are crazy if you ask) in the upper lobe of her left lung and that the cancer spread to the lymph nodes in her neck (that's how high they covered with the radiation). The radiation oncologist wouldn't say any more than he hoped that the radiation would have stopped the cancer but we won't know right away. I hope this message isn't too long. Thanks for reading. Jeannette Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted June 8, 2004 Share Posted June 8, 2004 I don't know if this will help, but one reason they are making you wait this time is that radiation continues to work for several weeks after the actual treatments end, so any scan now would be premature in terms of gauging their effectiveness. But we have all been there. My hair is a couple of inches longer than it was back in the day, and that is just from pulling at it so hard. Hang in there. Curtis Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted June 8, 2004 Share Posted June 8, 2004 Jeanette, I sympathize. You do what you can. and distract yourself ( and your mom ) like nuts in between. Keep busy. Rent movies. REad books, play scrabble. Agitating at waiting is like beating your head against a wall. Doesn't accomplish much. Have some faith that the radiation is still cooking away, and the debris is being carried off to give a better scan. You want the best film you can get. Keep posting, company helps!! you're not alone... XOXOXOXOX Prayers, MaryAnn Quote Link to comment Share on other sites More sharing options...
john Posted June 8, 2004 Share Posted June 8, 2004 I *personally* would find another doctor if they did not share all the information with me. For example IIIa vs IIIb. I again *personally* think it would be important for me to be involved. Other people don't want to know, but I would want all the information, all the options and all the details and explainations. Quote Link to comment Share on other sites More sharing options...
Tiny Posted June 8, 2004 Share Posted June 8, 2004 Jeannette I am also one who wants to know all the facts so as to be better able to make important decisions. I ask for copies of all scans and reports. So far, I have not been charged for these, but I deem them so valuable that I would pay for them. I also go in a few days after an appointment with a doctor and ask for a copy of their "chart notes" from my visit. It takes a few days for the notes to be transcribed and filed in your folder. This allows me to see if what is "written" agrees with what I believe was "reported" during the visit. If there were discrepancies or things that were not mentioned or that I didn't agree with, I would follow up ASAP. I keep these copies labeled and organized in a 3-ring binder. At first I was regularly using an on-line medical dictionary or asking the doc or nurse for clarification of terminology, but over time I've mastered most of the lingo. Your mom would need to sign a waiver to allow YOU to access records, or she can ask for them herself. Praying for the best. Quote Link to comment Share on other sites More sharing options...
Guest Jeannette Posted June 9, 2004 Share Posted June 9, 2004 Thank you for the replies and encouragement. Something I didn't mention: my mother lives 200 miles away from me. That's one of the things that makes this hard. And I'm learning that I can't trust that she "gets" everything the doctor says. I think I like Tiny's idea of getting copies of all the reports. I'll have to see about doing that. Mother's oncologist keeps saying he'll call me, but after her appt yesterday Mother called me and told me the onc really didn't say much - just that she is anemic, he wanted her to get some bloodwork done, and he will see her again next Monday. I hate saying I don't believe her, but after talking to her regarding her appt last Wednesday, I know for a fact that she doesn't hear and remember everything the doctor says. I guess I'm off to see the wiza.... uh.... call the oncologist. Jeannette Quote Link to comment Share on other sites More sharing options...
Connie B Posted June 9, 2004 Share Posted June 9, 2004 Hi Jeannette, Sorry to hear things are not going well for you and your mom. I will share this with you. WE PATIENTS don't tend to hear HALF of what the doctor's tell us when we are sitting in there offices! Only because we are pretty much in somewhat of a shock mode! I don't know ANYONE who can relay all the ins and outs of what the doc's tell us. So.... on that note, you might ask your mom to take along a tape-recorder. It's allowed!! Does anyone go with your mom to her appointments? She really shouldn't go this alone! It's very very hard to hear things (second hand) as you are hearing them at this time. Good luck and stay with us, we'll do our best to help you through. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted June 9, 2004 Share Posted June 9, 2004 CONNIE: Thank you so much for sharing that (about that patients don't hear it all). I have been totally amazed at some of the things the onc has said that my husband didn't hear. I thought it was the WBR. JUST KIDDING!!! I didn't really think that. JEANETTE: I've come to the conclusion that I think most oncologists must be "Don't ask, don't tell" doctors. At least the three that we work with are. They will answer anything we ask, but they aren't real quick to volunteer information. One, they don't like giving us bad news anymore than we like to hear it. Two, you just have to ask, ask, ask. I truly think that they expect us to ask. If you stop and think about it, if they told us everything they knew, our brains would probably go into overload mode. Has your mother signed a HIPPA form and told the doctor that he can talk to you about ANYTHING that has to do with her medical condition? The waiting is the worst part. Good news is WONDERFUL. Bad news is devastating, but WAITING is torture!!! God bless you, Peggy 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.