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update on mom


Guest Marlon

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Hello all,

I think I will post here from now on. I know I haven't written much lately, and from the bulk of emails I've gotten I realized I haven't been keeping you posted. Sorry about that. I have some awesome news to report. If you recall, my mom was diagnosed July 2002 with right malignant pleural effusion; probable lung primary. Inoperable because of the fluid. This fluid buildup caused her lung to collapse, and caused a "rind" to form around her lung, preventing it from re-expanding. After getting several opinions and undergoing some rather crappy service at other hospitals, we switched to the Block Clinic in Evanston. The result: she got better.

About a month ago, they ran some tests on her fluid to check for cytology. The result; no signs of infection and no CANCER CELLS. However, the fact that fluid is still building up around the lung is due to a mechanical problem; probably lymphatic blockage. Today, all my doubts about the competency of those previous so-called "specialists" we met with before were confirmed. We went to see this very nice, knowledgeable Lung Surgeon last week at Lutheran General. After months of being told there was nothing anyone could do to re-expand her lung, this lady today told us there are indeed two different surgical options for her. They are both minimally invasive surgeries to remove this rind around the lung, to attempt to get it to re-expand. Then, she can have the pleuradeisis, as confirmed by my months of research. She seemed very confident about it as if it was nothing major. This after being told by other "pulmonary specialists" that no one would put my mother thru that. I mentioned this point to the lung surgeon, and she basically laughed it off, saying that this procedure is not in the knowledge base of most "pulmonary specialists". 'After all, when are they ever in the operating room?", she said. It is something that she performs only 3 or 4 times a year, but with high rates of success. They would use video-assisted surgery, with a thoracoscope, meaning very, very little risk to the patient. Recovery time is a matter of days, because she is not removing any lung tissue. Just this membrane thats not supposed to be there anyway. I wish we had gone to see her first.

The point being, doctors don't know everything, especially oncologists. Also, per our meeting last week, there is a world of difference between a "pulmonary specialist" and a thoracic surgeon. Get as many opinions as you can, and find doctors who are willing to let you investigate your options. Make sure you hear the words str8 from the mouth of the right doctors. Scour the planet if you have to. Actually, since we switched over to Block, my mother has only been hospitalized ONCE, recently, for fever. Also, I never would have convinced my mom to see this lung surgeon had I not mentioned her to our new oncologist, who was man enough to admit he wasn't a lung specialist, and recommended we talk to this lady. He ordered the PET scan when the other doctor wouldn't. See, with my mom, she needs to hear things from people other than me before she finally listens. You have the right to be angry and question everything. See now, the doctors at my mom's first hospital are talking about possible surgery to remove the chest tube(that they put in months ago). They are concerned about infection. Her pulmonologist even gave her a hard time, saying "Well, why don't you just go to the other hospital then?". Can you believe that crap? She gets better without their help and they can't stand it.

Sorry about the length, but I know I owed you guys an update. We are planning to schedule the procedure during my mom's next off-week of chemo, which is in 3 weeks. Hopefully all her other scans come back clean. Please pray with us for a successful surgery, and successful recovery. Thanks to all of you! :)

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