beckyg Posted June 12, 2003 Share Posted June 12, 2003 My husband talked to the pulmonologist today because we were both getting antsy that we hadn't heard anything yet. The news was not clear--he said that the report isn't in on the pleural effusion they sampled, but they think there were cancer cells in it. If so, that means more chemo instead of surgery. As for the PET scan, he said, "It showed basically what we expected to see." Curtis didn't ask him to clarify that, so at the moment I have no clue what that statement means. Is the tumor bigger? smaller? I had doctors tell me they saw both. I went in thinking that the lung tumor was responding and we were looking to see if the lymph node tumors were responding too, and now all I have is "what we expected to see"??? On the good news side, my air conditioner is working again--it was an easily repaired leak, so my old unit can limp along for a little while longer. Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted June 12, 2003 Share Posted June 12, 2003 BeckyG, It sounds like you have the same docs we have here in Dallas...After our first visit to the Pulmonologist, I made a promise to myself that I would not leave a Doctors office until I got the answers to my questions. Sure, they hate to see me coming, but surprisingly, I have found that even hounding them on the phone has been very productive. You hate to bother them, but you also hate not knowing... I prefer to know, even if it's not what we want to hear. Keep your thoughts positive... you'll never guess what they are really thinking anyway. Cheryl was not supposed to get the results of her mediastinoscopy until tomorrow. By working the phones and showing that I'm not going anywhere real soon, we managed to get the results last Fri. It wasn't what we wanted to hear, but at least we are prepared to take this thing on with everything we have. A little more time to do research and make decisions hasn't hurt a bit either. Remember, these docs are just like us, they put their pants on one leg at a time! Our thoughts are with you both. -Jack- Quote Link to comment Share on other sites More sharing options...
Guest DaveG Posted June 12, 2003 Share Posted June 12, 2003 Becky: Not knowing all the answers is very streeful indeed. My wife keeps a note book. When ever something comes up, my wife writes it in the notebook as a reminder to ask the doctor on the next visit. Right now, that's not bad, as, while on chemo, I see my oncologist every three weeks. Some people will use a handheld tape recorder. My wife also takes notes when we are with the doctor. Most doctors don't mind the patient doing these things, because they know that the orders will be followed. It can also help catch the doctor if they ever contradict themselves at a later meeting. (Doctors never contradict themselves - they just forget ) Try keeping notes. My wife also runs a daily journal on me and her. I hope this information helps. Quote Link to comment Share on other sites More sharing options...
Karma1976 Posted June 12, 2003 Share Posted June 12, 2003 no offense but what a pompous *ss he is for making that statement! UMMMM what we expected to see??? so if he is optimistic...everything is working the way we want it too, if he sees the glass as half empty then we knew the cancer will take over??? I am so sorry for that statement! BUT on the other hand congrats about that AC!!! Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted June 12, 2003 Share Posted June 12, 2003 I too am an in your face answer me before I rip your teeth out kinda person. Yesturday at my moms onc. visit. he told us that on her x-rays he could not see any tumors at all. He said either they were gone or so small we'd need a CT to know. She had her chemo (5 hours) and when I went to the doctors secretary to schedule she had me sit there until she got pre-approval from the ins. co. on the phone. when she was giving moms DX to have the approval she said "Yeah Lung cancer with brain mets and bone mets and spinal cord mets" I YELLED what freaking bone and spinal cord mets??? we were never told about them!!!!! I DEMANDED to see her onc. and he came out of another patient and said there isn't any, its just how we code our charts for the insurance co. to approve it quickly. I made him show me her PET scan and prove it to me. my point....? demand answers on the spot. so fear of the unknown is not in the equation. Quote Link to comment Share on other sites More sharing options...
Tiny Posted June 12, 2003 Share Posted June 12, 2003 Hi Becky, I wondered if you and your hubby were asking for copies of CT and PET scan reports, blood work reports, doctors' chart notes, etc.? They can be helpful for you and your husband to keep in a notebook to read and refer back to. That way you can kind of cross-check to make sure what the doctor said and what you heard and what is written down all seem to be corresponding and can lessen the chance of unpleasant "surprises" later. The doctor or head nurse will usually look them over first to see if they have written anything they feel needs additional explanation, but it is your RIGHT to see them and have copies. Ask for clarification of anything in them that you don't understand. Best of luck and glad the air conditioner is keeping you cool . Quote Link to comment Share on other sites More sharing options...
Peggy H Posted June 12, 2003 Share Posted June 12, 2003 Becky - I agree with Tiny. Ask for copies of the written reports. We may not understand all the medical terminology but go right to the "Summary" section at the end - we all know what "increase" "decrease" "no change" and "new lesion" means. Then we can ask specific questions. My sister's oncologist also has a habit of saying things like "about the same" or "some disease progression." Now, maybe that's all some people want to know, so we have to be very specific about what information we demand. Good luck. Quote Link to comment Share on other sites More sharing options...
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