JoniRobertWilson Posted May 8, 2004 Share Posted May 8, 2004 I know this cancer is growing inside my husbands body, not mine, but I feel like the dr and his nurse aren't "getting it". My husband was dx 3/17/04. SCLC limited. He's been scanned, etc and has undergone 28 days of radiation and 3 3-day rounds of chemo. I found a lump on his back and called the nurse. Another nurse checked him out and said it was nothing. I wanted the doc to see him and "feel" it. Geez, I'm thinking if a nurse can "feel" a lump and determine it's nothing, we can do away with all sorts of CT scans. Help - I'm not sure how to push this. We had to go back, go back, go back to the doctor over a period of time (short) and they had passed us off to a specialist over 2 weeks away. I pushed to get an x-ray and they found the cancer. Seriously, waiting the two weeks just to see a specialist (not even the right kind, mind you) could have likely ended him up with Extensive SCLC. I don't want to alienate the nurse/doc though. Advice please. My husband is young (41) and I just can't deal with this somedays. Quote Link to comment Share on other sites More sharing options...
Debi Posted May 8, 2004 Share Posted May 8, 2004 Hi Joni, I realize what you mean about not alienating the doctor or nurse. At this point though, as you are well aware of, the stakes are pretty high. My advice to you would be to push, push, push until you get the results you want. If this includes maybe going for a second opinion, then go for a second opinion. One thing that I have found out is that we are the ones responsible for getting the care that we need. All too quickly, either in my own experience or on the board, I have seen patients get less than adequate responses from their doctors and nurses. I think we are taught to generally respect what doctors say, this disease teaches us to rethink that notion and to demand respect from our doctors and nurses instead for what WE say and need. You seem to have already began this journey insisting on what you needed. Just keep going.... I wish you and your husband the best... Quote Link to comment Share on other sites More sharing options...
Ry Posted May 8, 2004 Share Posted May 8, 2004 Joni, I can't really add much to Debi's post except to stress how important it is to find a doctor you have confidence in and that is a good fit for you. We tried 2 other oncologists before we stayed with the guy we have now. The thing that made him different was he responded to John's complaints and didn't just say it was part of the disease. If his cough was bad, he got a perscription, etc. So find someone you trust that will work for you. Good luck, keep posting how you're doing, and welcome to the wives club. Rochelle Quote Link to comment Share on other sites More sharing options...
ginnyde Posted May 8, 2004 Share Posted May 8, 2004 Joni, So sorry you have to be here but welcome. I know what you are talking about. We were raised to believe that doctors are 'perfect'. We now know better. The person that was last in med school is still called dr. The insurance cos. put such demands on them, xx number of patients per hour etc., it gets tough for even the good drs. to do a good and thorough job sometimes. BUT, this is your husband. You must do whatever you need to do to make sure he is getting the correct dx. and informed treatments. Second and third opinions are the norm - not the exception. Also having a dr. that treats you with respect and listens is critical on this journey. Ginny Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted May 8, 2004 Share Posted May 8, 2004 KEEP it up. I know from first hand experience NOT all Dr are what they are supposed to be. I had one Dr friend who said the scary thing is anyone can be a DR all they need is money and lots of time (meaning it takes along time to finish med school) My Dr is good about doing xrays and CT if there is a question about a lump or cough that is abnormal for me. It helps put my mind to ease. Good luck Love Cindy Quote Link to comment Share on other sites More sharing options...
jamie Posted May 8, 2004 Share Posted May 8, 2004 Joni, My Dad has some doctors that you really have to push around. He sees the nurses more than his oncologist. Not to lessen the importance of nurses, but aren't the doctors paid the big bucks to answer your questions??? I second the idea of pushing the doctors for tests. I think sometimes doctors forget that every patient is an individual, and everything should be checked individually...by a doctor...and actully checked!!! Be sure you have open lines of communication with your doctors. My dad was put into a "group" at his office, where they really just gave everyone the same advice, and treatment because they had SIMILAR stages and dx's. My Dad went in there kicking and screaming, and he actully stood in the waiting room yelling that he's about to "fire all of you b*st*rd doctors", if he couldn't talk to one now! (He went in with a question for his doc. who was in the office, and the receptionist told him its not Wed., and the doc. only sees patients on Wed!!!) After he flipped, he gets in there right away. Wether or not they like it, it has changed the way they deal with him. He also had to push for a second PET scan they werent going to give him. They were just going to start him on another round of chemo, but he pushed and pushed. Guess What??? They found out that the cancer was out of his lymph. and he is going in for surgery at the end of the month! Doctors are not perfect, and that is why you need to question everything... Hope this has helped Best of Luck Jamie Quote Link to comment Share on other sites More sharing options...
JoniRobertWilson Posted May 8, 2004 Author Share Posted May 8, 2004 Thank you all so much for your replies and advice. It's great getting advice from people who know what you're talking about and feeling. I am going to follow your advice and push for the doctor to check him out. I hope and pray that they were right and all is well with this lump. I can't believe you all responded so quickly. What a blessing. Thank you, thank you. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted May 8, 2004 Share Posted May 8, 2004 Joni, each cancer patient needs an advocate in the system and you are his (as I am for my wife). So often the patient is too tired, too sick, too medicated to fight for his/her own rights and that is why a clear-headed advocate is needed. As the others have said, push for what you want, what you need, until you are satisfied you've gotten the right attention, the right information for you. Keep us posted. Don Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted May 8, 2004 Share Posted May 8, 2004 I would call the office and get another appointment maybe Monday and even just say you have some questions. While you are there asking questions, the doctor can check it. That nurse might have been just having an intense day, may have even regretted saying that by the next day. Surely they would not deny you getting your concerns answered. Go ahead and get a list of them. We like our medical team very much but I find they are so busy they seem to forget things sometimes, I do not mind at all reminding them and they are okay with that. Like - setting up an appt in another clinic, I say,yeah, and the bloodtest and the Procrit,too, and she says, Yes, I better put that on the order ... Like she wasn't going to. Maybe she was and was just being diplomatic with me. No matter - at least the order went in right. Another thing. If I need something and the order hasn't been given, I just tell the drug store, lab, whatever, call them - they do and whatever is needed gets done right away. I am not saying they are a bad team, just that they have hundreds of patients, I only have one person to advocate for. Quote Link to comment Share on other sites More sharing options...
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