natalie Posted January 21, 2004 Share Posted January 21, 2004 we went to the doctor today and the doctor determined my mom has fluid in her lungs. She pulled out a sample and said that we will know in a couple of days whether it's cancerous fluid (she sent it to the lab). The doctor said that if it's cancer fluid, then she can drain it out, but that it would come back each time she drained it so she's recommending hospice if it's cancerous fluid. I'm shocked at this and not familiar with fluid in the lungs. She said that cancerous fluid is a jello type consistency. I didn't know that fluid can be cancerous...does this mean its multiple, small cancer tumors? Should we give up if it's cancerous? The doctor said today that she is pretty confident it's cancerous...i didn't expect this. Quote Link to comment Share on other sites More sharing options...
Andrea Posted January 21, 2004 Share Posted January 21, 2004 Nat, I remember awhile back you said your mom's doctor was moving, but you could still be in touch with her. Is she gone yet and this is a new dr? If so, maybe call the old one to see what she says. Or possibly go somewhere for a second opinion? I know it is hard to get a second opinion when you are so comfortable with who is treating you. My thoughts are with you and your mom Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted January 21, 2004 Share Posted January 21, 2004 I just had about 2 litres of fluid taken off my right lung yesterday and they sent a sample in also. I have to wonder why they put your Mom through the procedure of taking a sample and did not drain it all at that time?? Seems like they are making it harder on your Mom than it needs to be. My Dr. said that the fluid looked "good" when they drew it out but they still need to do a culture on it. I would look for a second opinion or at least someone who would not make your Mom go through the same procedure twice. Prayers are with your Mom and your family, MO Quote Link to comment Share on other sites More sharing options...
natalie Posted January 21, 2004 Author Share Posted January 21, 2004 Andrea, This is the original doctor...she leaves in Feb...this is the one I like...so I find myself sometimes trusting her judgment because I know she doesn't want my mom to suffer...but then I don't want to 100% trust her judgment b/c she's been wrong about other things. Mo, I don't know why they didn't drain more fluid either. They only got 30 cc's. I asked why she couldn't drain more and she said it's because she's pretty confident it's filled with cancer and that there are complications with the procedure such as puncturing her lung...she really didn't give us the option to take the chance and plus she made me scared to say okay, well we'll take the chance. She also said that she could tell if it's cancerous immediately because it will turn red...well I saw it and it was yellow, so I said "phew, it's yellow, so that must be a good sign", she said "well, there's a little blood in it and the consistency is a little thick" I swear I stared at the sample throughly and didn't see any blood but accepted the fact that I'm under qualified to make that judgment. Tonight, again, she called my Dad and recommended hospice...she recommended hospice a month ago...well we declined and recommended my mom stay on Iressa and my mom regained her strength (with the exception of this weakness starting about 10 days ago) and her tumors showed some shrinkage since they said "hospice" They also said my mom wouldn't make it passed Christmas and she's still here. My mom's set for Gamma Knife on Thursday to get rid of a tumor they found in her brain that is less than a cm. Well the onco called the surgeon and told her what was going on...well now the surgeon wants to cancel the procedure and schedule a CT scan (that can take weeks!). To do the procedure they have to do an MRI anyway and it's a more detailed MRI that detects small tumors mm in size, so I'm confused...why wouldn't he just do things as planned and if they see something strange on the MRI, go from there? Why the CT scan vs. MRI all of a sudden? We've tried to call the neurosurgeon, but he hasn't called us back...we are just going to show up for the surgery and see what happens. This is an HMO, so I've noticed I've really got to take charge in my mothers care. Although it breaks my heart and makes me sick, I'm ready to accept that this is it, if it will mean that anything further will definitely decrease my moms quality of life and cause her pain, but she's not in any pain right now, she's tired and weak, but on no pain pills, so why give up if my mom's not in pain? I don't understand why they are giving up? Why would the doctor recommend hospice already when she doesn't even have the results from the drained fluid? Do you think she already knows and trying to break it to us gently? Oh my gosh, I'm so sorry for making this so long and venting...its just been such an emotional day today...I don't know what I would do without you guys for support. thank god for all of you. Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted January 21, 2004 Share Posted January 21, 2004 Natalie, There is still alot they can do. Seek another doctor's opinion. I've heard of a procedure in which a permanant type of drainage port is implanted so that the talc procedure doesn't have to be redone over and over. Sorry, I can't remember the name of it. Prayers for her are being said now. Cheryl Quote Link to comment Share on other sites More sharing options...
berisa Posted January 21, 2004 Share Posted January 21, 2004 natalie, i second others to seek another opinion. For myself as a caregiver, we don't want to surrender. If your mom doesn't want to give up now, then fight hard and adopt aggressive approach, certainly there is no point to give up under manageable situation. Ask your oncologist about the honest behind reason of why she recommended hospice. Ask her don't hide any facts. Quote Link to comment Share on other sites More sharing options...
Andrea Posted January 21, 2004 Share Posted January 21, 2004 Natalie, My advice is to be pushy. I know it is easier said than done and sooo awkward when you like a doctor, I had that problem once. But hey, you can always blame your actions on your mental state I say call the neurosurgeon office every couple of hourse and demand a response. Are there any other drs involved? Like my mom does not have a pulmo, but we have thoracic surgeons who also handle pulmo stuff. If there is a pulmo dr, call them and demand an immediate consultation and/or referral to another oncologist. If you don't get return calls from her dr, say something like "I am so sorry for sounding harsh and my constant calls, I just am so scared and I only have one mom. Can you please document in her chart that I called a few times on what I believe to be an emergency situation where every day counts and no one is returning my calls." Emphasis urgency. Also misrepresent yourself if need be. Seriously. I did this uninteionaly. I called the oncologist I wanted who has a two month wait list and said "Hi, I am calling from Cedars in LA, this patient underwent a mediastoncopy today and lives in Orange County, CA and Dr. ____ said she must be seen by Thurs." (I'll leave the name out) Next thing I know, I got an appt Thurs. What I really meant was that I personally was at Cedars, my momhad the test, and the dr said it was positive for cancer and Thurs would be a good day for her to see oncologist after recovery. Turns out, they thought the Cedars doctor personally demanded it, so i got it done. PUSHY PUSHY PUSHY is the way to be and we have a right, we are already mentally drained. Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted January 21, 2004 Share Posted January 21, 2004 Hi Natalie, The polite word for pushy is PROACTIVE. That means you will not take no for an answer. You will camp at their doorstep, swamp their phones, demand answers. Look things up from other sources, and flabberghast them with your knowledge of things beyond what they personally have told you. Talk specifics. Have your list of questions written down. Have your list of options written down. Quietly but firmly remind them your mom isn't dead, and therefore there's every reason in the world to continue to deal with her brain mets. Ask what is to be gained by the different test and the delay in the surgery. I was astounded at how quickly my father's surgeon called me back from North Carolina, but then I realized I was calling from NIH, where I work, and he had no idea of what my capacity there was. As I sounded authoritative enough on the phone (it was MY dad), he was quite frank and forthcoming with technical details. Don't quit. Get second opinions. Find out WHY they are doing what they are doing, it might start to make sense. God bless your mom, and you for taking her part in this. You're in our prayers, MaryAnn Quote Link to comment Share on other sites More sharing options...
ginnyde Posted January 21, 2004 Share Posted January 21, 2004 Natalie, My sister, who does NOT have lung cancer had fluid drained from her chest 2 times. Both times it was red, the second she said it looked like tomato soup. They tested for LC. No cancer. Then they did the surgery to put in the talc. She has had no fluid since. Prayers for your Mom. Ginny Quote Link to comment Share on other sites More sharing options...
Fay A. Posted January 21, 2004 Share Posted January 21, 2004 Natalie, I was told that once my right lung was removed the space that was left would fill with fluid, and that over time that fluid would thicken to a jello like consistency. I was told that this happens to everyone who has a lung removed, no matter if the lung came out due to cancer, TB, an injury, whatever. Even the best docs -who rarely make mistakes- sometimes DO make mistakes. If your Mom want to continue with treatment, and continue with the brain surgery then she should have those options. No one should be FORCED into Hospice. I know how tough it is to be the daughter in this situation. I am sending you my best wishes. 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.