Guest Posted May 5, 2003 Share Posted May 5, 2003 Please help!! My lung tumor has shrank to the degree that doctors cannot find it a on cat-scan. My problem is now that when the tumor is gone (or almost gone as I mentioned before cat-scan does not show it) that the friction among the collapsed lung walls causes profuse bleeding. I am not sick any more. I have no night sweats, no temperature, and not afraid of drafts. As a matter of fact I forget what does it mean to have a cold ( and believe me a had a lot of colds before. And some of these colds lasted for more than six months) My greatest challenge now is to find a surgeon to open the lung that was collapsed three years ago. Please help. I cannot recline to have some sleep. I have to stand or to sit strait to prevent excessive bleeding. Is there some way to open the lung myself? Quote Link to comment Share on other sites More sharing options...
Marlon Posted May 5, 2003 Share Posted May 5, 2003 Hi, My mom had collapsed lung that eventually turned into a trapped lung(where a fibrous membrane covers the lung, preventing it from expanding). Her CT and PET scans finally showed up clear, but all these other doctors told us nothing could be done about the lung. Then, we found a wonderful surgeon who operated on my mom like it was nothing. Turns out she is a professor of surgery who knows both minimally invasive and major techniques to re-expand a lung. Only thing is, the hospital's here in Park Ridge, Illinois. I can give you her information or maybe she knows someone there in Florida who is equally as knowledgeable and aggressive. Just let me know. Quote Link to comment Share on other sites More sharing options...
Guest Posted May 6, 2003 Share Posted May 6, 2003 Thank you very much for answering. I am getting desperate seeing that nobody, seems, knows anything. Doctors I visit have no answer as well. I am so happy that somewhere in Illinois is a professor of surgery who can re-expand my lung. For how long was your mom's lung closed? Did she have a tumor in the lung before the lung collapsed? I would be very happy to receive the professor's telephone so I can call her. Adelina Quote Link to comment Share on other sites More sharing options...
Marlon Posted May 6, 2003 Share Posted May 6, 2003 Hi Adelina, Believe me I know the feeling. All my mom's other so-called "lung experts" did not have any options to treat the trapped lung. They said it was a major surgery nobody would put her through. Maybe this surgeon can help you. She is very nice and down to earth and knowledgeable. Here is the link to her contact info: http://www.drolak.yourmd.com http://www.advocatehealth.com/db/physre ... l?pid=2888 My mom's right lung collapsed because of malignant pleural effusion(fluid buildup around the lung). It eventually built up to the point where it filled up her whole right thorax and wouldn't expand after drainage. Her first oncologist knew about the trapped lung, but he just assumed that it meant she was terminal so they sent her home with a do-it-yourself drainage tube. He also assumed that tumor inside was preventing it from properly re-expanding, when in actuality there were never any tumors found. From September to March(6 months), my mom's right lung was functional, but only about 10% the original size. Surprisingly enough, she never needed an oxygen tank. Half of the battle was convincing her to see this surgeon because all the other doctors did not offer us any hope. She went for 6 months having to have her fluid drained every two weeks. All while doing chemo. As long as there is no airway blockage, which seems like the situation in your case because there is no tumor, and the underlying lung is healthy, then the lung should re-expand. If you end up having a procedure, she will probably ask for your latest CT/PET scans and X-Rays. My mom's surgery took about 5 hours, because it started off as a minimally invasive surgery, but turned into a major thoracotomy when the surgeon saw she had to remove the pleura as well. After the surgery, my mom's lung expanded immediately to 85%, then eventually over the course of a month to 100%. When we first consulted with her, she told us it wasn't guaranteed that the lung would expand completely, because it was collapsed for so long, but the important thing is she was willing to try! Actually I read somewhere she was recently named one of the best in Chicagoland. Needless to say, all my mom's earlier doctors are dumbfounded. Also, if you do end up flying to Illinois, you may be able to fly free using either of these services. http://www.corpangelnetwork.org http://www.angelflight.com Quote Link to comment Share on other sites More sharing options...
Guest Posted May 6, 2003 Share Posted May 6, 2003 Marlon, I have already called Dr Olak. Plus tomorrow I am going to see a surgeon in Cleveland Clinic here in Florida. My appointment is supposed to be on Friday, but since I am bleeding today again,the doctor will see me tomorrow and he is squezing me in between other patients. I used to bleed approximately every two months. Now I bleed almost every other day. Did surgeons told your mom to not strain herself, to not pick up heavy things? My husband had two surgeries and I had to work really hard.. and I am afraid I torn something inside of my lung.. I have an awful experience with the doctors. They never share with you any useful information. They treat you as a little child who is not able to understand what is really going on and who is not able to find and interpret any medical information. And what the most I hate about them is that they are always trying to intimidate you into submission while so often their knowledge is so pitifully obsolete.. So many of them stop learning as soon as they leave medical school. I know that they all have rigorous training while in medical school but what is so good about this training if they cannot help you? With the knowledge of alternative medicine I shrank my tumor and forgot how to be sick for months, but when I am trying to explain it to an ortodox doctor he looks at me like I am an idiot and immediately discards everything I am saying.. I have read a couple of times that we have a lousy interaction between a doctor and a patient. It may be because a doctor's large ego and a need to be always right are much bigger than his desire to help. I am so greatful to you for information! Adelina Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted May 6, 2003 Share Posted May 6, 2003 God bless you Adelina and I hope you find some relief soon. Peg Quote Link to comment Share on other sites More sharing options...
Marlon Posted May 7, 2003 Share Posted May 7, 2003 I have an awful experience with the doctors. They never share with you any useful information. They treat you as a little child who is not able to understand what is really going on and who is not able to find and interpret any medical information. And what the most I hate about them is that they are always trying to intimidate you into submission while so often their knowledge is so pitifully obsolete.. So many of them stop learning as soon as they leave medical school. I know that they all have rigorous training while in medical school but what is so good about this training if they cannot help you? I have read a couple of times that we have a lousy interaction between a doctor and a patient. It may be because a doctor's large ego and a need to be always right are much bigger than his desire to help. My thoughts exactly. You sound like you've had the same luck we've had with our first doctors. Most of them talk to you like you're stupid, until you write their patient relations department a nasty letter. I even asked Dr. Olak why those other pulmonolgists said it was too major a surgery, and she was like, "What do they know? When are they ever in the operating room?" Was Dr. Olak able to help you? Quote Link to comment Share on other sites More sharing options...
Guest Kay Posted June 17, 2003 Share Posted June 17, 2003 I am checking to see how your collapsed lung is doing? My Mother is dealing with one as well and I am curious about your treatment. Her's does involve a SCLC tumor completely blocking the airway in the upper left lobe and narrowing in the lower left lobe. We are currently waiting to be seen by specialists to discuss treatment options and I am doing as much research as possible. Any update you have would be appreciated. ---Kay Quote Link to comment Share on other sites More sharing options...
Rocco Posted June 18, 2003 Share Posted June 18, 2003 I'm very sorry to hear about your complications. If something good can come out of this, it should be that cancer patients need to learn to insist on complete diagnosis and information from their doctors. They also need to seek second opinions in a timely fashion. I know the diffeerence between my first onc and the specialist I saw was like night and day. I doubt I would be NED today had I not gotten a second opinion from a specialist. A second opinion can never hurt. Good luck. Rocco Quote Link to comment Share on other sites More sharing options...
David P Posted June 19, 2003 Share Posted June 19, 2003 Hi Adelina. I hope Marlon's information helps with your collapsed lung. I can't imagine having a bleeding, collapsed lung for such a long period of time. However, I do love to see the message board and it's supporting cast members playing a key role in helping someone who is at their wits end; this looks to be just another one of the many such cases - congratulations you guys - it's no wonder being part of this board makes me feel so good. Thanks, and stay in touch Adelina. David P. Quote Link to comment Share on other sites More sharing options...
Guest DaveG Posted June 19, 2003 Share Posted June 19, 2003 I have had 3 collapsed lungs, once after the biopsy, and again after my two surgeries. All were treated with the insertiong of chest tubes, somewhat painful, but bearable. The longest I had a chest tube was for 3 weeks following my first surgery. The chest tubes were successful and my latest scans, which by the way showed 50% shrinkage of the tumors, didn't show any scarring or residual effects from the chest tubes. Quote Link to comment Share on other sites More sharing options...
Guest Kay Posted June 19, 2003 Share Posted June 19, 2003 Dave: Thanks for your reply and the info about not scarring. Congrats on that. We are a week away from seeing specialists to determine what Mom's treatment options are for her collapsed lung. The two that have been mentioned early on were a localized radiation done through a cath like a bronchoscopy or stints. If you have ever heard of anyone who has undergone either if these type of treatments, I would love to hear about it. Just trying to be as educated as possible to make the right decision. Thanks in advance for your time, Kay Quote Link to comment Share on other sites More sharing options...
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