Lauri Posted October 27, 2003 Share Posted October 27, 2003 Hi, everyone. First of all, some good news. My mom finally made it to the rehab floor at the hospital after going through an unexpected scary ordeal from a VATS lung biopsy that was done on October 17th. I am glad to see her recovering finally...what an ordeal! I have a problem/question though that I want to pose here: Immediately after the biopsy was completed, the doctor (still in his scrubs) spoke to my sister and I and confirmed our worse fears. He told us that she has lung cancer for which there is no cure and surgery would not be an option since it spread to her lymph nodes near her spine. So my sister and I have been dealing with this news since the 17th and preparing ourselves for a real battle with this cancer. We are prepared to take her for a second opinion at Fox Chase and get MOVING. Here's the problem: Since her condition has been so bad and touch-and-go for the past week or so, the doctor has apparently felt it best NOT TO TELL HER about the results of her biopsy. We have agreed with this all week...she has been in really bad shape. And the surgeon has avoided her and us all week. He finally saw her yesterday without us being present, told her she would be in rehab for 5 days or so, gave her an x-ray prescription for after she is discharged and told her he would see her in his office in about 2 weeks! STILL did not tell her the results of her biopsy. He apparently wants to make sure she is FULLY recovered. In the meantime, precious time is sliding by. I am very concerned that this whole process is taking too long. By the time she sees him again in two-three weeks, then gets the news, then gets around to seeing a few oncologists and having more tests done......it's going to be another 6 weeks of no treatment...etc. Am I being overly concerned?? I am sure he thinks she needs the time to recover before starting up again...she obviously couldn't handle the treatments necessary right now....but a part of me thinks we are now wasting precious time. Plus, she is in the dark and, on a few occasions, has asked us if we knew anything. It must be he/// for her... Has anyone else experienced this problem? Is this normal??? We cannot talk to her about it since our hands are temporarily tied. I do not have a problem being the squeaky wheel......I will do ANY KIND of research necessary....but I want to get on with this battle and get away from this doctor ASAP. He is very pessimistic and slow-moving (in my opinion). I appreciate any thoughts or opinions. Thanks for all your help..it does make a difference... Take care, Lauri Quote Link to comment Share on other sites More sharing options...
Donna G Posted October 27, 2003 Share Posted October 27, 2003 Is your mother a particularly fragile person? Is she very old like 96 or something? Does she have a lot or a serious medical problem other than the lung cancer? Does she have a primary doctor? It seems to me that there must be some reason why at this time he could not tell her what is wrong. Didn't she ask? I can see you are really in a pickle now. It would be awful for you to "break the news" You did not say what the "ordeal" was with the VAT biopsie. Did her lung collapse ?, for sometimes that happens. I think it would be very unusual for someone to be discharged to "rehab" or a transitional care unit even after having a lobectomy. Maybe you can tell us more so we can understand the circumstances better. I am sorry you are having to deal with all this. Donna G Quote Link to comment Share on other sites More sharing options...
ginnyde Posted October 27, 2003 Share Posted October 27, 2003 Lauri, My husband is being treated at Fox Chase, his oncologist is Dr. Roger Cohen. You may want to call there and maybe have your mother's medical records faxed, or pick them up and take them there, including films if there are any. This would allow them to review your mother's case without your mother. Now I am not sure they would do this, but it is worth a shot. Their number is 215-728-6900. Ginny Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted October 27, 2003 Share Posted October 27, 2003 Laurie, I would get your mother to Fox Chase for an evaluation ASAP. Find a doctor who will talk to her, this guy is not being professional, unless your mother asked to be kept in the dark and she would have told you. It isn't too late, I had a series of radition plus chemo -- cisplatin and vp-16 all at the same time, and it killed my primary tumor, which had spread hugely and was eating away at the little spiky bones that come off your spine. It also ate five ribs and a lot of other tissue. Meanwhile, be your mom's advocate, and call on the doctor to level with her. You're right, though, about wasting time. Don't. Go to one of the Centers, like Fox Chase, where they are progressive and intelligent. I've never heard of a doctor who would not tell a patient the diagnosis, not today. Good luck, and I hope your mom feels stronger soon. Warmly, XOXOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
Don Wood Posted October 27, 2003 Share Posted October 27, 2003 Lauri, sorry about your mom. My tendency is not to keep secrets from the patient nor the close family. But you know your mother best and can decide that for yourself. You are not obligated to be "tied down" by the physician on this. My intuition tells me you need a second opinion and soon. I don't like the secretness and the slowness of this guy. Just my two cents. Don Quote Link to comment Share on other sites More sharing options...
norme Posted October 27, 2003 Share Posted October 27, 2003 Lauri, You are going to have to be the one to decide when to tell your mom. The surgeon who operated on my dad 30 yrs ago did this very same thing to me. I had to be the one to tell Dad. The surgeon never spoke of cancer. I waited a few days thinking the doc knew what he was doing but my dad kept on wanting to know the outcome. We older people are not dumb. YOu be the judge. YOu know what your mom can and cannot take. I would never under any circumstance want to be left in the dark.... Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted October 28, 2003 Share Posted October 28, 2003 I guess I am looking at this from the patient side. I know I would be so upset if my family or the Dr kept something this big from me. I know every situation is different but if your mom has been able to take care of herself in the past and make her own decisions then she ought to know. I would at least ask the Dr why he felt she should not be told. I probably would then have one of her other Dr tell her. There are treatments for most type of cancers that help shrink or get rid of it all together. Good luck. Quote Link to comment Share on other sites More sharing options...
gail Posted October 28, 2003 Share Posted October 28, 2003 As you can see I am in South Jersey. I am very curious which hospital you are at right now. I left the local hospital and took my body to Pennsylvania Hospital. Go anywhere in Phila that will see you. I have stories about the local place that I still cringe about. You can PM me, or email me at gc508@comcast.net gail Quote Link to comment Share on other sites More sharing options...
Guest DaveG Posted October 28, 2003 Share Posted October 28, 2003 Tomorrow is my 60th birthday. I was diagnosed with lung cancer in September 2001. The doctor told me straight out that I had lung cancer. I am my own advocate and I wouldn't have it any other way. I know that as a Stage IV, I am terminal. When all this terminates is out of my control. I am doing everything in my power to insure that I am getting the best treatment available. I guess what I am saying, is why are you keeping this from your mother? If she is in her 60's, which I suspect, she should be able to accept what is going on. Secondly, what Stage is she and does she have SCLC or NSCLC? Granted, lung cancer does not have the best record for survival, but people do and have survived lung cancer, either SCLC or NSCLC and at all Stages. Don't underestimate your mother, she survived the decade of the 1960's and 1970's. She may just want to have full control over all her treatments. Personally, I want control over what happens to me. Quote Link to comment Share on other sites More sharing options...
Lauri Posted October 28, 2003 Author Share Posted October 28, 2003 Thanks everyone for your thoughts....I have really tried to see it from all angles. I am going to call her doctor myself and just go over his plans for her. I will be diplomatic about it and try not to upset the apple cart before I have permission to do so. I guess my concern is partly that it is NOT ME, it is my MOTHER. She is a strong woman who calls her own shots. I am still her daughter and am trying to be respectful and not just run around doing whatever I want. I would prefer that he tell her and then she could discuss it with us when she is ready. But this is insane! She chose the local doctor and the local hospital...before we, her daughters, "knew"...it was all set up and no amount of coaxing could change that. She wanted to be close to home and heard wonderful things about this doctor (her neighbor has survived lung cancer with his help). We were able to talk to her about the possibility of it being "confirmed". She said that if it was confirmed, she would seek a second opinion from Fox Chase. That's all we've discussed. But now our hands are tied because she does not have her confirmation yet.....We have no diagnosis other than Non-small cell, possibly stage II or III. Dave, your strength amazes and inspires me. I laughed at your reply...surviving the 60's and 70's (geez...the 70's were my teenager years and you're right..she survived them!). I want her to have control of her treatment, but I don't know how/when to pull rank and do what I think is best. It's partly about respecting her decision of chosing this doctor at this point, too. I think this will all be resolved soon. Based on what I've read here and my own intuition, I've decided to hang in another day or two and then make a friendly phone call to her physician. Mom is still recuperating in the transitional unit and she is not pushing it right now, so I am following her cue for the time being. Thanks..you guys kick azz ..... Take care, Lauri Quote Link to comment Share on other sites More sharing options...
Hebbie Posted October 29, 2003 Share Posted October 29, 2003 Hi Lauri, I guess what comes to mind first with me is that you need to clarify the Stage -- because if, as you have said, it is either Stage II or III, the doctors doom-and-gloom comments of being "uncurable" sound ridiculous! Quote Link to comment Share on other sites More sharing options...
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