SandraL Posted February 18, 2009 Share Posted February 18, 2009 Until yesterday, the mystery remained as to why I went into full kidney failure, abcess, etc during my recent hospital visit. I had my first regular follow up with my med onc yesterday although I had seen her a few times while I was in the hospital. I have been off Tarceva since all this craziness started and presumed we would be talking about going back on that or some other treatment. She had been away in Dec and I was under the care of another doctor. I had some confusing CT scans from which to assess the effectiveness of Tarceva so had another one done on Dec 24. I explained to my doc yesterday that I had never seen the results of this. The results were not on my file either. So she went and looked on the system. When she came back to the room she looked surprised and explained that she had located it. And that the lump on my chest had been there on Dec 24. And also that there was a cloudiness surrounding both of my lungs. She said had she seen this she would have followed up on this with a bronchoscopy and sought some other professional help. Trouble was...NOBODY appears to have ever looked at this scan. And had they, it might have been followed up on right away instead of my condition getting worse, and landing me in hospital with a life threatening condition. I have absorbed all of this since yesterday and am very MAD and intend to follow up on how this could have happened. My med onc then also put out the thought that the abscess and the cloudiness just may be an allergic reaction to Tarceva. That would be a very rare reaction but she said entirely possible. The reaction then grew into an infection and an abscess which subsequently poisoned my kidneys. So we are following up all this with another CT scan and she is going to consult with some lung specialists. She said after the CT we may get a bronchoscopy done to have a look around. I sure hope the infection is all gone. Anyhow, I am mad that my life was put at risk because of improper follow up of a scan. It does appear though to be unraveling a bit of the mystery of all that happened. Boy do you need to be your own advocate in all of this and follow up on every single test etc. Things it appears can easily get missed...important things that can have an impact on your life!!! So I am getting a CT scan next week and we will see next steps after that. Quote Link to comment Share on other sites More sharing options...
Kasey Posted February 18, 2009 Share Posted February 18, 2009 Boy, I am so sorry, Sandra. And you are so right about being your own best advoate. We can NEVER let our guard down, take a rest from being anything other that vigilant ~ and yes ~ even aggressive. I know many here wait lengthy periods of time for scan results. Some (not ME) prefer to wait and find out at a future appointment. Others (like ME) want/need to know ASAP. Scans are in the system almost immediately ~ if not the same day, for certain the next. Shame on the healthcare system for allowing this to happen. I hope you puruse this and make LOTS of NOISE about it too. I'm holding onto the hope that no permanent damage has resulted from this negligence. Like ya don't have enough on your plate already! Can you tell I'm pretty fired up? Anyhow, Sandra, glad you are getting some answers. I hope those yet to come are of a positive nature. Kasey Quote Link to comment Share on other sites More sharing options...
jaminkw Posted February 18, 2009 Share Posted February 18, 2009 Sandra, I can't tell you how sorry I am that you went through all of this in the dark. It's hard to sort out, isn't it, how much of what happend to you was due to a substitue doctor's neglect. I am so glad your original oncologist is back on board and hopefully you'll find out what's what now and get back on track with a treatment plan. I'm with Kasey. I'm freaky about getting my scan results the same day. So much so that my onc came in carrying the films to show us on a screen last time. Someone dropped the ball in the lab and my CT was late and consequently the scan results weren't in the computer yet. Once she got up and left the examing room to go to the radiology dept to demand someone put them in so she could access them because they should have been ready. I feel a little bad sometimes for being so demanding. Not bad enough though to suffer the anxiety of waiting. There was a day though I would not have been able to assert myself like that in a medical environment. Judy in Key West Quote Link to comment Share on other sites More sharing options...
shineladysue Posted February 18, 2009 Share Posted February 18, 2009 Sandra, I am angry with you. That is gross negligence, somewhere. Yes, you do have to be your own best advocate. Many times, my mom will say " no news is good news, I've always thought".. well, unfortunately "no news" may be that no one has bothered to follow up or get the news .. which has been the case on all too many occasions where my family has been concerned. I can't tell you how many times Mike or my mom would arrive at the doctor for scan results and find out the doctor didn't have them yet. Wouldn't it be wonderful if the doctors actually made a note to check on the results themselves? This is something that all cancer patients need to know.. you can't assume anything and you have to look out for yourself. Sandra, I'm just so very sorry for all you have been through. Know that my thoughts and prayers are with you . Hope you get answers and hopefully solutions to all your problems soon. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
RandyW Posted February 18, 2009 Share Posted February 18, 2009 You amy want to run the results up Dr Wests Flag pole as well and see what he says about results. Wish i knew who to fuss at for neglecting you like that but your system is different! Hugs and Prayers for a Great new scan and Glad your ONC is on things now !!!!!! Quote Link to comment Share on other sites More sharing options...
Patti B Posted February 18, 2009 Share Posted February 18, 2009 Sandra- Wow - I sure would be p@ssed too if I were you. That is totally uncalled for. You are right that you have to be your own best advocate - you know I have had to tell my onc a few things lately. And he now treats me like a queen!!! A phone call to the Medical Director of the facility seems to be in order here. Like Judy, I was once the kind of person who would not cause waves but this is cancer we are talking about, not an ingrown toenail!!! I am so sorry and hope that all this gets sorted out real soon. Keep us posted!!! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Tiny Posted February 18, 2009 Share Posted February 18, 2009 Chiming in with the others about having to be your own best advocate. I had a similar occurrence of a test ordered by a substitute doctor not being followed up and it delayed my recurrent diagnosis by about 2 months until I coughed up some blood. Mostly I'm mad at myself for not going to see about the scan results myself. When I didn't hear from anyone (the onc's office or my primary doc who had been cc'd), I wrongly assumed everything was OK. WRONG! Keep following the trail and try to get some answers. Best of luck on new scan and treatment options. Quote Link to comment Share on other sites More sharing options...
recce101 Posted February 18, 2009 Share Posted February 18, 2009 Are there provisions for malpractice suits in the Canadian health system? Ned Quote Link to comment Share on other sites More sharing options...
LovesLife Posted February 19, 2009 Share Posted February 19, 2009 OMG Sandra - that absolutely sucks! It is all too believable though. I don't know how many times I have had doctors say to me "Don't call us, we'll call you" with results. Having worked in the medical system all I have to do is share a story where a report was filed by a junior clerk prior to the physician seeing it - the report stated cancer. Luckily it was caught that very same day (purely accidental finding) and the patient didn't suffer from what could have just been accidental filing! To this day I believe physicians are doing a disservice by not having staff contact patients (like they used to!) regarding lab work, scans, whatever ... just to let them know that a physician has seen it - even if it is all normal. Sadly this happened to you and it makes me hoppin' mad. Does the one who let this finding slip by have any clue as to what you have gone through; what your family has gone through; and what you are continuing to go through?!? I am so very angry at this entire situation. If there is any way or manner in which I can help please just let me know. I hope you know we are all praying hard and sending out positive thoughts that the infection is gone. Many hugs to you my friend, Linda Quote Link to comment Share on other sites More sharing options...
Bud Baker Posted February 19, 2009 Share Posted February 19, 2009 Dangit, that is maddening! It's today's reminder that we, indeed, need to do our best to stay on top of what our doctors are doing. Quote Link to comment Share on other sites More sharing options...
fillise Posted February 19, 2009 Share Posted February 19, 2009 Sandra--it's bad enough to deal with the stupid disease, but this type of negligence is rediculous. I hope you will be standing over the radiologist/drs reading the next set of scans. You should never have had to go through that. Susan Quote Link to comment Share on other sites More sharing options...
Andrea Posted February 21, 2009 Share Posted February 21, 2009 Wow, there are no words. It really is sad how we have to be our own advocate. I hope you raise heck!!! Of course get better first. Sending good thoughts your way. Quote Link to comment Share on other sites More sharing options...
carolhg Posted February 21, 2009 Share Posted February 21, 2009 I am glad to hear that you are certainly going to follow up. It makes me angry right along with you for something like that to happen. Carol Quote Link to comment Share on other sites More sharing options...
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