cafe99 Posted October 30, 2009 Share Posted October 30, 2009 Hi all, My brother-in-law was diagnosed 10/2/09 with non-small cell lung cancer. Unfortunately they live in Florida & I live in NJ. We (as a family unit) have never had to deal with cancer before & are very confused & despondent. We have no idea how quickly things should be happening with treatment --it seems like everything is happening too slowly. We were told in the ER that the mass is blocking the bronchus & is inoperable because of the location, chemo & radiation would hopefully shrink it so it would become operable. OK, got it. 1st chemo while in the hospital. Goes to radiation doctor for mapping -- can't do it, no one checked with the insurance company in time. Has PETscan as outpatient, 2nd mass in pleura. Nobody has sat down with him & talked about what the options are, what the pros & cons are -- nothing. Any info we have, we found ourselves. Anyway -- he hasn't had any radiation yet & now there's insurance issues because they want to do IMRT & the insurance says "no". He's having his 2nd chemo on Monday. Does this all sound slow & disorganized? I'm not sure if it just feels that way because of our anxiety. Any insight would be great. Thank you, thank you....... cafe Quote Link to comment Share on other sites More sharing options...
Patti B Posted October 30, 2009 Share Posted October 30, 2009 Hi Cafe- Welcome to this forum. Hope you find a lot of information here. I don't understand why they can't do radiation "because noone checked with the insurance in time". Sounds to me like a second opinion with a doc and hospital that knows what they are doing would be a good idea. This is nothing to take slightly and if your BIL (or anyone in the family) feels the least bit uncomfortable with the medical team, RUN, don't walk to a second opinion. PLEASE keep us posted. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Janet B Posted October 30, 2009 Share Posted October 30, 2009 I know that when I was first diagnosed it seemed just like that - totally disorganized, confused and rushed. I was diagnosed in the hospital and the hospital doctors just kept making decisions and changing their minds , scheduling surgery and then canceling it and finding more lesions and scheduling radiations and chemos and tests with little explanation to me and my family. It wasn't until after I sat down with that doctor and then a second opinion and third opinion doctor with a pad and pencil and my husband and sister to help with the questions that it all started to make sense and a plan that I understood and agreed with was put in place. Once they have sat down for a long consultation with a doctor they trust - with questions ready and pad in hand for notes - things will make more sense and seem more organized - I am a FIRM believer in second opinions - Prayers to you all - come here with questions or just to vent - peace - janet Quote Link to comment Share on other sites More sharing options...
fillise Posted October 30, 2009 Share Posted October 30, 2009 I agree-it sounds like a second opinion is worthwhile here. It may be helpful to try to get to a comprehensive cancer center where he can be treated by a coordinated team. He also sounds like he needs an advocate--cancer patients really need someone to do all the arguing for them. Susan Quote Link to comment Share on other sites More sharing options...
recce101 Posted October 31, 2009 Share Posted October 31, 2009 Also, a truly competent cancer clinic or center will have people on staff (including the docs in many cases) who understand the insurance side of the picture and what Medicare and/or the various companies and plans will and will not cover, and you don't get a lot of unpleasant surprises. Basically, you won't be scheduled for something unless it's been checked out and the skids greased, so to speak. They know what details to provide and what terms to use to ensure that a procedure or drug is approved. Good luck and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
tjrasMOM Posted November 3, 2009 Share Posted November 3, 2009 This sounds like how my mom's treatment has been from day one. I have found that you have to push & push. But find an oncologist who will push with you and for you. It is ok to change doctors, to seek 2nd opinions. Tha family and friends must be the advocate for the patient. Blue Cross denied my mom for almost everything. PET scans, MRIs, etc. But her onc pushed and pushed until we'd get it covered. We'd even rush some tests at the end of the calender year if her deductible was going to start over at the beginning of the new year. (Maybe Blue Cross knew that they wouldn't get their $7500 and this was why they'd deny claims) -- but thanks to our amazing dr., we have gotten through it. It is not easy. The waiting is the hardest part. And insurnace companies do NOT help. They cause more pain, but that's why it's so important to find a doctor who is willing to fight with you. I'm so sorry you are struggling through this difficult time. But just remember, the doctors are not God.....you will need to start researching on your own -- or coming here and posting questions. There is an amazing group of beautiful and wonderful people here who will ALWAYS help you. =) I speak from many experiences. Tova Quote Link to comment Share on other sites More sharing options...
jaminkw Posted November 3, 2009 Share Posted November 3, 2009 While you are considering a second opinion, I recommmend going to cancergrace.org and asking the docs there for their opinion. They are careful not to give specific recommendations to a patient they have never seen. But they respond quickly for no fee and are excellent at giving general opinions on treatment proposed according to the industry standards. Good Luck. Judy in Key West Quote Link to comment Share on other sites More sharing options...
tjrasMOM Posted November 3, 2009 Share Posted November 3, 2009 Judy... do you think they would also help diagnose when we can't figure out what went wrong with my mom's mental state? Although, we are faxing all of mom's medical records to UC Davis where another doctor will give us a 2nd opinion. I wish we had done 2nd opinions a while ago...not that I don't trust her onc 150%, but who knows what would be suggested, or discovered....etc. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted November 4, 2009 Share Posted November 4, 2009 They can't give a diagnosis but they can tell you what they believe could have happened as a result of what. I'd try anyway. They are very good and kind. Judy in Key West Quote Link to comment Share on other sites More sharing options...
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