Anyone out there with IIIB NSCLC with malignant pleural effusion?

reinstones1

My beloved mother (age 68) was diagnosed with Stage IIIB NSCLC on 12/7/05. She presented with shortness of breath, which was found to be due to pleural effusion around her right lung . . cytology of the fluid removed via thoracentesis identified malignant cells.

She started chemo last week (chemo was delayed due to complications and pleurodesis which had to be performed to address the pleural effusion problem). Doctor's "best guess" is that with chemotherapy she has 1-3 years to live.

I am just now crawling out of the very black hole I fell into after her diagnosis, and now I'm trying to arm myself with hopeful, positive information. Mom's spirits are good, and I want to be that way too. Any information is appreciated. Thanks in advance for any replies.

Plymouthean

Hello. I was diagnosed, at age 67, with nsclc, stage 3b. I was inoperable/incurable. My very positive doctors focused on treatment, not "how long". After "aggressive" chemotherapy and radiation, the tumor was shrunk by 75%, and surgery removed the upper lobe of my right lung. Two months after surgery, I had ten radiation treatments, and twelve weekly chemo treatments. Since then I have been cancer free. I am approaching 5 years from diagnosis! The doctor's best guess is just that, - a best guess. Doctors will always be conservative in their prognoses. They base their "guesstimates" on statistics. Statistics can often be made to say what you want them to say. Every year, a percentage of patients survive nsclc. Someone has to make up that percentage. Why not your mother? Now that the "black hole" is behind you, (we've all been there) try to educate yourself, and your mother about her illness. Ask lots of questions, - be active in the decisions regarding her treatment. Maintaining a positive attitude is one of the most important factors in this fight. My prayers and best wishes to you and your mother.

reinstones1

Plymouthean said:

Hello. I was diagnosed, at age 67, with nsclc, stage 3b. I was inoperable/incurable. My very positive doctors focused on treatment, not "how long". After "aggressive" chemotherapy and radiation, the tumor was shrunk by 75%, and surgery removed the upper lobe of my right lung. Two months after surgery, I had ten radiation treatments, and twelve weekly chemo treatments. Since then I have been cancer free. I am approaching 5 years from diagnosis! The doctor's best guess is just that, - a best guess. Doctors will always be conservative in their prognoses. They base their "guesstimates" on statistics. Statistics can often be made to say what you want them to say. Every year, a percentage of patients survive nsclc. Someone has to make up that percentage. Why not your mother? Now that the "black hole" is behind you, (we've all been there) try to educate yourself, and your mother about her illness. Ask lots of questions, - be active in the decisions regarding her treatment. Maintaining a positive attitude is one of the most important factors in this fight. My prayers and best wishes to you and your mother.

Hi. Thanks so much for your reply, and congratulations to you on doing so well on your journey. It is encouraging to read stories such as yours, and I am excited to share it with Mom. She too was told that she's "inoperable/incurable". For her, radiation is apparently not an option (right now, anyway), because the pleurae encompass such a large area that targeted radiation can't be used. So right now, we are hanging our hopes on chemotherapy, a positive attitude, and prayer.

You are so right about conservative doctors. I know that we'll never find one who'll tell us what we want to hear. . . and even if we did, would we believe them anyway? :-) I will look forward to reading continued posts from you, and will have you in my thoughts and prayers for continued good news and good health. Thank you again.

crot1998

reinstones1 said:

Hi. Thanks so much for your reply, and congratulations to you on doing so well on your journey. It is encouraging to read stories such as yours, and I am excited to share it with Mom. She too was told that she's "inoperable/incurable". For her, radiation is apparently not an option (right now, anyway), because the pleurae encompass such a large area that targeted radiation can't be used. So right now, we are hanging our hopes on chemotherapy, a positive attitude, and prayer.

You are so right about conservative doctors. I know that we'll never find one who'll tell us what we want to hear. . . and even if we did, would we believe them anyway? :-) I will look forward to reading continued posts from you, and will have you in my thoughts and prayers for continued good news and good health. Thank you again.

Hi there. My father was diagnosed in Aug. 05 with stage 3b nsclc with pleural effusion, thoracentesis revealed that the pleural effusion was benign. My father has just finished 4 rounds of carbo/taxol with great results. Just wondering what the original size of your mother's tumor was and why surgery wasn't an option. My father is doing well, it is a roller coaster but things do get better.

reinstones1

crot1998 said:

Hi there. My father was diagnosed in Aug. 05 with stage 3b nsclc with pleural effusion, thoracentesis revealed that the pleural effusion was benign. My father has just finished 4 rounds of carbo/taxol with great results. Just wondering what the original size of your mother's tumor was and why surgery wasn't an option. My father is doing well, it is a roller coaster but things do get better.

Hi-- if she were just dealing with the tumor (which is localized and small), her cancer would have been resectable. However, it's the malignant pleural effusion that makes the cancer inoperable. Once the pleurae are involved, the cancer is considered to have spread to the chest wall, and the pleural layer that forms part of your chest wall cannot be removed via surgery. I'm glad your father's pleural effusion was benign. I'm happy to hear that he's tolerated the carbo/taxol well, and that his results were good, and wish him continued success and good health. Thanks for your reply.

scungileen

Hi,
My dad was just hospitalied with a pleural effusion and a lung embollism. The effusion was surgically attended to and a talc powder was used to inflate the lungs. We are waiting for the results of his drained effusion. They believe the cancer has spread to the chest cavity and that the effusion is malignant. My dad had lung cancer two years ago which was surgically removed successfully and no lymph nodes involved. Unfortunately, we didn't insist on chemo at the time and we believe that is why the cancer is back. Our oncologist gave us a lot of hope with the new drugs, but unfortunately during his recent stay the surgeon did not share the same opinion. Our oncologist was away for my dad's surgery and he is going to see him this Friday to get an update on his prognosis. We are hoping for the best.

reinstones1

scungileen said:

Hi,
My dad was just hospitalied with a pleural effusion and a lung embollism. The effusion was surgically attended to and a talc powder was used to inflate the lungs. We are waiting for the results of his drained effusion. They believe the cancer has spread to the chest cavity and that the effusion is malignant. My dad had lung cancer two years ago which was surgically removed successfully and no lymph nodes involved. Unfortunately, we didn't insist on chemo at the time and we believe that is why the cancer is back. Our oncologist gave us a lot of hope with the new drugs, but unfortunately during his recent stay the surgeon did not share the same opinion. Our oncologist was away for my dad's surgery and he is going to see him this Friday to get an update on his prognosis. We are hoping for the best.

Hi-- that's what my mother had done (pleurodesis with talc, and then again later with doxycycline, because the talc didn't work as well as they'd hoped). Just to clarify, though, the talc doesn't "inflate the lung". . . what it does is fuse the 2 pleural layers together, eliminating the pleural space, and therefore, eliminating the pleural effusion (at least that's the idea). Does your Dad have a chest tube in now? Probably; my Mom did. Seeing the fluid drain out is pretty darn sobering. I am wishing the best for your Dad. Stay positive. NOTHING I've read about malignant pleural effusion is positive, so I stopped reading about it. It was self-defeating and scary, and counter-productive. It's best to stay positive, help keep your Dad's spirits up, and pray for the best! Chemo is also supposed to help pleural effusion. . . my Mom's fluid hasn't come back in copious amounts since her surgery. . . I guess the pleurodesis combined with the onset of chemo have been a big help. Don't allow yourself to be brought down by negative medical professionals, either. Take care of yourself!