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    KB2013 wrote on Space19's wall

    It's April 1st, just saw your initial post re: stage IV nsclc.. Welcome, ask anything you like, many lc pts here.

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    KB2013 asked a questionLung Cancer

    Diagnosis and follow up visits

    8 answers
    • BudBandit's Avatar
      BudBandit

      My oncologist won't tell me anything..In the 4 months Iv'e seen him I wouldn't know what a follow up is.It was another dr. , a radiologists that told me where the cancer had spread,all the oncologists said was we won't be doing an infusion today,see me in 3 weeks.He don't tell me why ,what he saw or nothing,the blood charts I get are emailed and I have no clue what I'm looking at.A female doctor,his fill-in when he's not there has told me than he has.The radiologist said I was in serious condition,my oncologists has no game plan since keytruda didn't work.Except for radiation,I really haven't had no other treatment,and the cancer is steady growing and spreading..

      3 months ago
    • Paperpusher's Avatar
      Paperpusher

      BudBandit that's inexcusable. Maybe you need to have a sit down with your oncologist. Hubby's onc is always too painfully cheerful even when hubby was feeling horrible. He's also very cut and dry and quick. We walked out of there one day and hubby turned to me and asked if I got the feeling that the onc was avoiding/hiding something. I had felt the same way. The next time we went in we told his onc that we wanted the truth good or bad. With the differences in his scan reports noted above and the nurse saying there were no changes, and with hubby asking but what about this...I put all the questions on the message center of the patient portal. We got a call yesterday when we were out.The onc wants us to come in since it was too much to cover in a phone call. I have an appt( hubby doesn't want to talk cancer or testing for a while) on the 13th to get the answers. Actually this will give me a chance to ask about memory changes I've noticed that I don't know whether they're from aging, chemo, or his stroke 14 years ago.

      3 months ago
    • DanielD's Avatar
      DanielD

      Based on the facts as you laid them out, BudBandit, this is unacceptable. How do you fight for your life with a general manager of your cancer treatment who won't communicate with you?
      Easy for me to say, but in my very humble opinion you need a new oncologist == from same treatment center perhaps or perhaps from another cancer treatment center. Switching cancer centers may not be that difficult and may be worth the hassle.
      You need every thing possible stacked in favor of beating this!
      Good luck , my friend.

      3 months ago