Frustrating/endless delays

sadie1105
sadie1105 Member Posts: 8
in Esophageal Cancer #1
My apologies for what is about to be an uneducated rant, but I desperately need some affirmation as to whether or not this is warranted.

Having experienced dysphasia and ongoing weight loss since October of last year (which was unsuccessfully treated as an ulcer) my mom was scoped 2 weeks ago and her cancer was found. It took quite a bit of prodding to get her local surgeon to hand over her medical records to a local cancer center, so that she could have a follow-up visit there and initiate the necessary testing. After her visit to a Thoracic Surgeon at the center last week, she finally had her PET scan today. Results pending.

In the meantime, however, her next appointment at the cancer center (with a Radiologist) is scheduled for April 11th. That's nearly a MONTH from now.

Is this timeline normal? It just seems to me that this is all taking a very long time, when time may be of the essence.

Any insight would be greatly appreciated for a daughter who is becoming increasingly frustrated.

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • paul61
    paul61 Member Posts: 1,392 Member
    #3
    Things seem to be moving slowly
    Sadie,

    These people are moving way too slow!!! I went to my primary care physician with complaints about acid reflux and some pain swallowing. He scheduled me for an endoscopy “just as a precaution”. The GI doctor who did the EGD said I see lots of irritation but nothing that looks like cancer. But “just as a precaution” I have taken biopsies and we will let you know. I got a call from the GI doctor on Monday of the next week that said “you have esophageal cancer”.

    He arranged a CT scan for Wednesday of that same week and made an appointment with an oncologist the following Monday for a review of the results. The CT scan showed no evident cancer, but the oncologist said “we know from the biopsies that cancer is there”. He arranged to have me sent to a teaching hospital with a leading cancer center to have an endoscopic ultra sound to provide an initial staging for my cancer. That appointment was the next week. While I was coming out of the anesthetic from that procedure a thoracic surgeon reviewed the results and came in and told me you have Stage II cancer and I would recommend surgery as soon as possible.

    My point in my long story is that all the testing and staging took place in about a three week period. At each stage the medical professionals I saw understood that time was of the essence and took the initiative to make an appointment for me that moved me to the next step. Quite frankly, my wife and I were in a state of shock, and just numbly went along from place to place.

    To wait for three weeks for the next step seems to be moving way too slow to me. You should have the results of the PET scan within 24 hours of the scan or within 5 days if they send it out for review. Your Mom still will need additional testing to finalize diagnosis stage and define a treatment plan.

    You may also want to consider a second opinion from a thoracic surgeon who specializes in surgery related to esophageal cancer. That would add additional time as well. As a first step they will be looking for test results used to establish preliminary staging (e.g CT/PET scans and EUS results.)

    Given my experience I would say you have cause to be concerned about the pace that things are moving forward. Physicians have a tendency to refer patients for appointments and testing within their own medical networks and sometimes, as William has pointed out, in order to move quickly you need to prod them to move outside their network to get things done more quickly.

    I would start asking why things are taking so long????

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED
    3/14/2011 CT Scan NED

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • birdiequeen
    birdiequeen Member Posts: 319
    #4
    Seems slow to me as well
    My husband was dx on 11/3/10, had PET scan, ultra sound etc. once we had the second confirmation that it was truly cancer; we took a few days to decide how to proceed and meet with two surgeons. He had surgery on 12/4/10. 8 days in the hospital and back to work before March. Still have some bad days and just got rid of the hospital bed.

    We had the same experience as Paul; the Dr's were setting appointments for us (even when their offices were closed). In some cases the Dr was the only one there and called us back to the room. I had never ever seen Dr's go out of their way as much as they did to take care of my Husband. They gave us personal cell phone numbers even.

    Just so you have a complete understanding of our timeline, it’s important to know my husband had Barrett’s for 11 years that his GI Dr was scoping every 2 years. 20/20 vision would say we should have taken action sooner, but the Dr's had given us all the options at the time.
  • sandy1943
    sandy1943 Member Posts: 824
    #5
    Sadie, The time line does
    Sadie, The time line does seem long. I was diagnosed on Nov. 13--had all the testing and my first chemo was on Dec. 26. My nerves wouldn't have taken a longer delay. The waiting is the worst part of starting treatment. Good Luck in speeding things up.
    Sandra
  • sadie1105
    sadie1105 Member Posts: 8
    #6
    sandy1943 said:

    Sadie, The time line does
    Sadie, The time line does seem long. I was diagnosed on Nov. 13--had all the testing and my first chemo was on Dec. 26. My nerves wouldn't have taken a longer delay. The waiting is the worst part of starting treatment. Good Luck in speeding things up.
    Sandra

    Extended timeline
    Thank everyone for confirming what I knew in my gut to be true.
  • Unknown
    Unknown
    #7
    sadie1105 said:

    Extended timeline
    Thank everyone for confirming what I knew in my gut to be true.

    This comment has been removed by the Moderator

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