kate1621 Posted September 16, 2004 Share Posted September 16, 2004 Well, we went for 2nd opinion at another center. The oncologist came in, w/a case manager/social worker. He didn't know all the details, that J's already in treatment. He was looking at a possible incoming new diagnosis patient. He sat on the stool, at eye level with us. The current guy is always looking down at us, and it never feels like a converation between us, more of him talking at us. What a difference. He started by asking J how he was feeling. J started spieling off the usual: fatigue, throat constriction, nausea etc. The dr then clarified the question. How are you feeling? (as opposed to What are your physical symptoms?) Then he explained his role in a cancer patient's treatment, and asked what our expectations were from the visit. We gave him the chronology of events, and our list of concerns. He took J's films, and the packet I brought. (I have his complete medical history-summary reports, blood counts, pathology reports, chemo orders, daily radiation log, etc.) He asked if he could present all info to his colleagues, and said he'd be back, handed "floor" to case manager. She explained her role w/anyone treated at the center, then opened up a discussion about coping, fears, struggles etc. He came back, and explained J's tumor inside and out, how each drug works, how the radiation ties in, the challenges a surgeon faces in direct relation to J's tumor. He spoke of vessels, nerves, and their function. Then he did a brief physical exam. J actually engaged in the conversation. If he didn't understood what was said, the dr reworded his phrasing. This thing in him has seemed so alien to him, and the current onc speaks in scientific terms, so J stops listening as soon as he can't understand. (usually early on) He explained which drug was causing him each problem. The dr even moved to J's other side when he realized that his hearing has been seriously affected. (talking to J can be a real challenge) He explained that J needs to drink at least 1 gallon of water daily, instead of "plenty of fluids". I felt silly, because I had to fight back the tears. Happy tears, as I watched this man "flip the on switch" for J. This man gave us more information in an afternoon than we've gotten from current place in 3 months. I might even bet that he said more words in one visit than current guy has said in 3 months. He said that he completely concurred w/current treatment, except he would spread out the cisplatinum. He said the 8 day regimen was making him so sick, and it wasn't absolutely necessarry, though it is most aggressive. THE BAD NEWS: He doesn't think it's in his best interest medically to interrupt treatment right now to change facilities. (J's set for chemo again all next week) He said he'd be happy to speak w/current onc about the cisplatinum schedule, but maximizing the treatment's potential requires staying put for now. He said I just need to remain vigilant about the areas that are so sloppy. He said it would be more beneficial to switch after this cycle, if that's what he wants to do. If only I'd been more aggressive from the onset. I feel strongly that this guy would be so much better, just because of his manner. Maybe he wouldn't have ended up hospitalized, if he had the cisplatinum over a longer period. J is highly fearful of this next time around, and it didn't have to be this way. I honestly don't know if he's committed to continuing treatment, or fighting this. J went back to work after appointment. I cried all the way home.(not swift during rush hour traffic when you drive a standard) I cried late into the night. Sadly, J had someone else "assisting" him in the early diagnosis stages. Someone else "assisted" him in choosing his care. I respected his choice, and stayed in the background, quiet. What was I thinking??? I thought it was the right thing to do by him, even though I knew there would be consequences. I didn't want to fight, when the word cancer had just been introduced to him. What an idiot I am. I showed "respect" by standing by and watching him make bad, life altering decisions. Though obviously irrelevant, the dr (yesterday) had a slight speach impediment/stutter. I wonder if that plays a part in how he's developed such clear and "humane" communication skills. Sorry to ramble..anyways, I have no idea what the next few days will bring. I only wish to get them over with. Kate Quote Link to comment Share on other sites More sharing options...
Elaine Posted September 16, 2004 Share Posted September 16, 2004 The GOOD news is that J. can change after this round. That's not so bad. By the way, what did he say, if anything, about possible surgery? And did he confirm the staging? I am glad that you have a DR in your future that will be someone you and J, will be more comfortable with. Try not to look back and place blame. It's hard not to, I know. But the future is what is most important. love and fortitude elaine Quote Link to comment Share on other sites More sharing options...
Snowflake Posted September 16, 2004 Share Posted September 16, 2004 Sadly, J had someone else "assisting" him in the early diagnosis stages. Someone else "assisted" him in choosing his care. I respected his choice, and stayed in the background, quiet. What was I thinking??? I thought it was the right thing to do by him, even though I knew there would be consequences. I didn't want to fight, when the word cancer had just been introduced to him. What an idiot I am. I showed "respect" by standing by and watching him make bad, life altering decisions. Kate, Do not second guess anything. Were you to have done it "your way", it also may not have turned out as you're guessing it would have. You will never know. Your bad news isn't really all that bad. Dr. #2 agrees mostly with treatment - a GOOD thing to hear. Dr. #2 is willing to take on J as a patient when this course is done - another GOOD thing, SWITCH DOCTORS THEN! J seems to have an easy time talking to Dr. #2. Work through the "lumps" now and then move to the personable doctor. Easy enough... Though obviously irrelevant, the dr (yesterday) had a slight speach impediment/stutter. I wonder if that plays a part in how he's developed such clear and "humane" communication skills. No, it does not. It means he was probably teased as a youngster (or whenever the impediment made itself known) but does not point to him being better or worse in humanity. Everyone has "handicaps", some are visible and others are not. Do not despair. It was ALL good news, really. Hang in there, Kate - the ride is just beginning. Take care, Becky Quote Link to comment Share on other sites More sharing options...
TeeTaa Posted September 16, 2004 Share Posted September 16, 2004 As difficult as it may be, you've just got to chalk it up to being a lesson learned, and be glad that you and J have other options in the future. Praying for us all, TeeTaa Quote Link to comment Share on other sites More sharing options...
kate1621 Posted September 16, 2004 Author Share Posted September 16, 2004 2nd guy agrees w/staging. He said surgery will be a challenge, and explained exactly which nerve bunch the tumor needs to shrink away from. He explained the decisions a surgeon will be making, and that J will have some say so in how much he's willing to risk. He said that the tumor is in a nasty location, the odds are slim, but he won't say impossible. He said that believing it can happen is the first step in making it happen. He said "I'm not God." This was odd because the doctors are so clinical, and it seems like having faith isn't part of their prescribed treatment plan. At times I feel a little foolish around oncologist because faith is all I can understand, I certainly don't understand the science. I will do my best to look beyond my failings, though I imagine I'll probably lick my wounds for another day or so. It's so hard to shake it off. I know in my heart if I hadn't dropped the ball, he wouldn't have ended up in the hospital, and wouldn't be so terrified now of round 2. I could've spared him so much pain and doubt, and he'd be better equipped to fight. However, I will learn from my mistakes, and all I can do is not keep quiet when I see something's wrong. I won't be afraid of ruffling feathers, I won't be that cowardly again. Yes, batten down the hatches, get through this cycle, and move onward and upward. Thanks so much for being here. Kate Quote Link to comment Share on other sites More sharing options...
elnodel Posted September 16, 2004 Share Posted September 16, 2004 Dear Kate, G_d knows we all have failures, but don't beat yourself up over it. Who knows what would have happened had you intervened. It's possible that you would be at the same place and would be asking yourself WHY you had interfered. The good news is that now you have a future plan and a doctor you both feel confident about. And one more round is not terrible, particularly if you can, with the second doctor's assistance, get the infusion spread out a bit more. I'm so glad you've got options in front of you, and J. must be feeling greatly relieved as well. That alone should help you get through the last, difficult as it may be. I know that Len, who had had no side effects of any importance to speak of, had the toughest time with his relatively easy carbo/taxol combination on the last cycle. You know what to look for and you know it's the end...so take heart. Keep us posted! Ellen Quote Link to comment Share on other sites More sharing options...
cathyjack Posted September 17, 2004 Share Posted September 17, 2004 Kate, Please don't beat yourself up!! It is unhealthly and a waste-it won't solve anything. Sounds like to me from reading your posts that you have been j's rock. I'm sure lots of us here would change a thing or two if we could. Hang in there, praying for you! Cathy Quote Link to comment Share on other sites More sharing options...
paddy Posted September 17, 2004 Share Posted September 17, 2004 Wow! I am impressed with the "second-opinion" onc Kate! PLEASE don't blame yourself, you didn't know, (at that time,) what you know now. There are so many "Shouda, Woulda, Coulda's" in this roller coaster ride, we just can't look back. Love and prayers. Paddy Quote Link to comment Share on other sites More sharing options...
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