ursol Posted February 27, 2007 Share Posted February 27, 2007 I had an apt last Tuesday with the Thoracic group at Sloan in NY. I showed up with my scan reports and my latest PET Scan and MRI scan. My apt. was at 1:00 and they saw me at 2:30 PM. I figured they were looking at my scans. I was wrong, after the doctor asked me a series of questions and quickly left the room to look at my scans, he said that he could not give me an opinion until he conferred with his radiologists about my PET scan. He said it would take four to five days, he would call my oncologist. today was day four, I figured I would call them tomorrow. I get home from work and find a UPS envelope. Within it is contained a disk from Sloan. It was my PET scan and Brain MRI disk with a note from their radiology that they needed my doctors signature to digitize the scans something about incomplete info. I couldn't believe it. I took a day to go to NY for absolutely nothing. I have also lost two weeks of treatment as my oncologist here is ignoring me since I was going for a second opinion. I no longer know what to do. The sad part is that my insurance company won't pay for more than 50% of the cost of the Sloan apt. Tomorrow, I need to call my oncologist to figure out what his problem is. Lilly Quote Link to comment Share on other sites More sharing options...
needhope Posted February 27, 2007 Share Posted February 27, 2007 Lilly, Continue to have faith. Hopefully you will be on the right path soon. I am battling whether I should push my Dad to seek a second opinion. Nothing against his doctor but its just good to know you are on the right track. With another opinion, the outlook can come out a lot different. Who knows? Sincerely, Rochelle Quote Link to comment Share on other sites More sharing options...
2weimies Posted February 27, 2007 Share Posted February 27, 2007 My mom and dad both went to sloan , I was not impressed but that was 20 plus years ago.Apparently they did not consider your urgency in their routine planning and necessary paperwork.Is there someone you could call there to help you navigate the system? A patient advocate or someone??Is there a particular physican that you can contact and actually speak with? I think most docs have excellent "gatekeepers" that keep them far removed from personal involvement with their patients its purely cvlinical that way. I wish you good luck getting some answers... I think you are definitely entitled to a second and even third opinion. I'd call the insurance company after you research a bit and see who else you can try to see. Quote Link to comment Share on other sites More sharing options...
trish2418 Posted February 27, 2007 Share Posted February 27, 2007 I'm so sorry you got the runaround at Sloan -- that just seems so unfair. If your oncologist isn't cooperating, perhaps your pulmonologist or primary care doc might be able to offer some alternatives? I hope it all works out. Keep us posted. Trish Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted February 27, 2007 Share Posted February 27, 2007 Ew, now that is aggravating. I am sure you have been on pins and needles waiting and then this. I hate that for you! It sounds like it is time to start making some very LOUD phone calls! Hugs.. Quote Link to comment Share on other sites More sharing options...
Don M Posted February 27, 2007 Share Posted February 27, 2007 Jeez Lilly. I hope you get the 2 offices to communicate a little better. Your onc should be ashamed of himself if he is acting as a stumbling block. I told my local onc at one point that I wanted a second opinion and he was very helpful. he recommended Dr. West to me. I hope you get something going quickly. Don M Quote Link to comment Share on other sites More sharing options...
Heather_T Posted February 27, 2007 Share Posted February 27, 2007 Well that just sucks. I don't know what to tell you. I am sorry you have to deal with this. Try and stay positive. Quote Link to comment Share on other sites More sharing options...
Treebywater Posted February 27, 2007 Share Posted February 27, 2007 ((((Lilly))))) These things make me just want to hit somebody. As if you don't have ENOUGH to deal with. Keep us posted on what progresses. And hang in there. Quote Link to comment Share on other sites More sharing options...
DrWest Posted February 27, 2007 Share Posted February 27, 2007 Of course, I wouldn't pretend that a website provides as much utility as an expert second opinion (although it could apparently do better than some of the lousy ones), but I started OncTalk.com so that people could get a sense of a lung cancer expert's perspective on the what are the general best practices, ongoing controversies, and emerging new approaches for lung cancer. I can't provide a tailored, individualized perspective -- that's a real limitation (and lawyers tell me I'd risk being hung by my toenails if I were to give real medical advice to someone who I only have an online medical relationship with). However, I wanted to at least offer a chance for people to get easy access to some basic ideas of whether what I'm saying about "best practices" in lung cancer corroborate what they're hearing locally. If not, it could be because of a very good reason to individualize a treatment plan (who wants to be treated just like everyone else?), but if it doesn't make sense, I hope people do ask and find out if they're getting the best treatment. No substitute for having your case reviewed at a major center, but you can't beat the price, and you don't have to deal with the airlines. I don't mean to be an info-mercial. Just wanted to say that I started the website to give everyone access to useful specialist information on an important topic like cancer. -JW Quote Link to comment Share on other sites More sharing options...
twodogs Posted February 27, 2007 Share Posted February 27, 2007 Lily, Please try to follow up on the advice from "2weimies" about getting someone to front for you at Sloan. Try your local American Cancer Society, your oncologists or surgeons and even your insurance company. Use family or faith connections too, if you have anyone near there. You deserve help from all of them so you don't get this kind of treatment again. I've been lucky in many regards, being in a small community. I've had everyone and everything I need close at hand, including an insurance "care counsellor", making sure I was happy or, at least, fairly happy. I'm on Social Security now but everyone here still looks out for me and often go out of their way to help. Stay strong and keep fighting. Best wishes and prayers to you. John Quote Link to comment Share on other sites More sharing options...
ernrol Posted February 27, 2007 Share Posted February 27, 2007 Lily, Sorry you are having such a hard time. I can’t believe that your oncologist is ignoring you. I was always encouraged by my oncologist to get a second opinion. I don’t understand why they need your doctor’s signature. The scans belong to you. I would call Sloan ask what they need and why they need it, and then get it from your doctor and FedEx them back. I know the time always seems to be a concern, but my oncologist says that it is not that serious to wait a few weeks, but it does bother me anyway. I will pray that you can get the results that you want quickly. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
Kasey Posted February 27, 2007 Share Posted February 27, 2007 I am so sorry, Lilly. I can offer you no advice in this particular situation except to let you know I dealt with quite a similar situation as well. Unfortunately it happened at Sloan too AND at another CCC closer to home here. If you don't mind my asking.........maybe you could PM me what ou are looking to do.....just where you are with tx, etc. I know my guy at NIH is great, but not sure it is what you are after. Kasey Quote Link to comment Share on other sites More sharing options...
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