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Joined: Sep 2012

I just received my husband's medical records from the hospital. Unfortunately, he did not survive, but I am hoping to help others and I will not give up until I get my answers from this hospital. My husband was diagnosed with esophageal cancer early this year. We were told T3 and N1+. He got through radiation, chemo, major surgery (Ivor Lewis resection), chyle leak complications etc. He was sent home to get stronger for chemo down the road but unfortunately he got weaker. The doctors/surgeons did not give us the details of the pathology report which was available a week after his surgery. I asked a medical student for the copy which was only a few days after he had to be readmitted on an emergency basis. This was almost 2 months since his initial surgery. He was readmitted, then two days later we were told it had spread through his blood to his bones. He passed away at home less than a week later. It is a shame because we would have done things differently had we known there was very little hope. Please make sure you drill these doctors/surgeons for pathology information, even if the patient is in the hospital with complications. The records stated he was staged at T3N3 and pathology showed multiple involved lymph nodes (16 out of 20) had demonstrated metastatic. We as patients and spouses, have the right to know what is going on, something this important should not have slipped through the cracks.

birdiequeen's picture
Posts: 329
Joined: Mar 2011

Thank you for posting this.

I'm so sorry for your loss and that you didn't have the information you needed to make decision.

Time for the caretaker to take care of herself.

Posts: 191
Joined: Nov 2011

How frustrating this must be for you. I think it is essential that we are given all the information so we can make the decisions that are right for us. I don't know how common this is, but one thing I appreciate about M D Anderson is that they have a patient page (My M D Anderson)and one of the things you can access on it is all the patient reports - radiology reports, blood test results, scan results, oncologist reports, path results etc. It gives you a warning that you may not understand some information and may be better off talking with your doc, but it lets you see everything if you so choose. This has been a godsend for me as I am by nature a worrywart and seeing all the details is really helpful for me as my mind will go to the worst case otherwise (I don't think Bill has ever looked at it - not sure he even knows how to log onto the site actually).

Donna70's picture
Posts: 921
Joined: Aug 2009

So sorry to see your post relating the information or should I say lack of you received during your husband's care. I think you are justified to ask for answers. You can schedule an appt with your husbands drs and ask them to explain some of this. I have worked for internists and if someone dies unexpectedly, it was not unusual for the family to come in for a visit with the dr and have their questions answered. I am sad for you because as you said you all may have done this differently if you and your husband had all the facts like less treatment more family quality time. My thoughts and prayers are with you and your family, this terrible disease exacts enough of a toll on all without the problems you have faced. take care,

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