malignant pleura

[jaminkw]

I was hospitalized locally for a complete white out of the left lung. They found cancer cells in the fluid removed from my lung and I eventually got to MD Anderson and received a diagnosis of IIIB lung cancer through further analysis of the fluid since the Chest Xrays, CT scans, CT/PET, and MRI show no tumor. The only thing they see are nodules here and there that may be something or nothing, a thickening of the pleura (the space between the chest wall and the lung which is said to be malignant) in the area of the lower lung where the fluid had been. I don't ask questions about "cure" but the doctors seem optomistic that I will "respond well to the chemotherapy treatments" I am getting. I haven't encountered anyone else with my particular situation even after going thru a dozen pages of posts on the Cancer Society lung cancer message board. It is also unique in that a tumor usually triggers the fluid and once it does and they drain off the fluid, the pleural effusions usually continue to recur in short order. Two liters of fluid were removed from my lung in September and (knock wood) the fluid has not come back. The doctors still don't know why I threw the effusion or why it hasn't recurred. Anybody know anything about this type of cancer?

[nyka69]

Welcome to our little community. I'm sorry that you had to find us, but am glad that you did.

I'm sorry, I don't have any experience with what you are experiencing, but you may want to try posting your questions on http://onctalk.com/. There is a wonderful medical oncologist that specializes in lung cancer that does his best to promptly answer all questions posted.

I hope that you get the answers to your questions and are quickly on the road to healing.

[jaminkw]

Thank you for your good wishes. I am so sorry your husband lost his battle but I am impressed that you are still on this site offering support to others fighting their own battles with cancer. I have a wonderful oncologist with whom I should be addressing this. Somehow no matter how much time she spends with us (myself and my husband and sometimes my RN daughter), I'm still left wondering because I haven't asked the critical question: Is this cureable. Maybe I don't want the answer or maybe the reactions of all the physicians I've seen tell me they really don't know in my case.

Thanks again. I will try the website you suggested

[Wendy]

Hello,

My lc hasn't been similar to yours but I wanted to say hello. I believe I have seen others here with similar stories but I can't remember their names.

Unfortunately the board is a little slow over the holidays so it may be a few days before you get more responses.

I truly understand how hard it is to get all of your questions answered. I would go to the doc with a list of questions and then on the way home I would start another list with questions. It is a scary disease and you are fighting for your life.

Can you be cured? There is always a chance that we can be cured of lc. You can also live with lc. Some people ask the question of time or cure, others don't want to know. Some docs will give you the information others will state that they really don't know - based on your case.

I wish you the best,

Wendy

[recce101]

Hi, welcome to the group! I agree that your situation is quite unusual, but it's not unheard of to have a malignancy for which the root cause (primary tumor) is never found. I'm glad you're planning to post the question for Dr. West -- he's an amazing resource and can give you a better perspective on this.

I'm also a IIIB who started my cancer journey 16 months ago with a massive pleural effusion, but I do have a primary tumor (adenocarcinoma) in the right middle lobe. Although IIIB is generally considered to be incurable, please don't get hung up on the word. Most of us have other incurable diseases which we manage as chronic conditions as a part of normal daily life, and cancer is starting to be thought of in that way. I think what we're really asking is, am I going to die from this? Probably the answer at this point in time would be "not necessarily," and our odds are gradually improving.

I'm in better condition now than I was at diagnosis, and at age 72 my expectation is to die "with" cancer but not "from" it. That's my totally unvarnished response to your very valid concern. My best wishes and Aloha,

Ned

[MsC1210]

jaminkw,

Hello and welcome~ I am sorry you had need to find a site like this but glad you have joined us. This is a wonderful community full of support and advice.

Please let us know how we can help..

Warmly

Christine

[Don M]

WWelcome Jaminkw. I don't know much about your disease. I would be interested to hear what Dr. West has to say. I hope the chemo makes it stay away and that you don't have to have any more fluid drained.

Don M

[jaminkw]

Don,

Sounds like you have had a really rough time for a long time. I am so sorry for your struggle.

Dr West said he didn't have much to add. He presumed I have some pleural-based nodules (I do). He said sometimes they see very little tumor bulk but a documented malignant pleural effusion (I'm not completely alone) and convention is to treat it like NSCLC with the most aggressive approach being what MD Anderson is doing with me (I have never questioned my oncologist but it's nice to hear a 2nd to what she's doing). The interesting thing he added was that over the next couple of years he expects they will break up advanced NSCLC into "chest only" disease like mine and advanced disease with spread to the liver, bones, brain, etc. He also said that the overall survival is much more favorable with disease limited to the chest only. He words were comforting. I certainly didn't feel like advanced anything cancer before the diagnosis and even though I have generally been handling chemo well, the fatigue has left me feeling not the person I was before the effusion. I get really scared.