• Just when I start to feel safe

    Asked by StaleyStacy on Tuesday, August 14, 2018

    Just when I start to feel safe

    Why won’t my new doc give me my cancer numbers?hes been making me wait.done with round 2.im losing faith in docs every day.

    11 Answers from the Community

    11 answers
    • carm's Avatar
      carm

      You can go to the medical records and request a copy of your results. They are your records... You pay for them. Best of luck to you.

      about 1 month ago
    • GregP_WN's Avatar
      GregP_WN

      What specific numbers are you wanting?

      about 1 month ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Have you asked your oncologist WHY he won't give you the numbers you want? My oncologist and I have gone around and around about when patients should get to see their radiologist reports after scans. I want mine right away because I want to know if there is an issue or not. I want to be prepared for what may come when I see the oncologist.

      My oncologist, on the other hand, does not want patients to see their reports until after they have visited with him. His reasoning is solid. First, there are often errors on radiologist reports. Some are more thorough than others. Some have terrible transcription errors (I had one that talked about issues with my arm, even though the scan was of my lungs ... it was just a transcription error that wasn't caught before the report was issued, but still...). Second, he doesn't always agree with the radiologist's conclusion. He wants to be able to show you the scan and let you look for yourself to see if you agree with him or the radiologist.

      So, I lose the battle on when I get to see my report most of the time (Occasionally, I can talk the nurse into scheduling my scan far enough in advance of my doctor visit that I will automatically get the report on MyChart, but not often). I can get a copy of the scan itself if I wait for them to make me a DVD, but I have never tried to read it.

      Anyway, my point is that your oncologist may have a good reason for why he doesn't want you to know the numbers just yet. Maybe he doesn't want you to be discouraged. Maybe he knows they are meaningless at this point in your treatment. I'm making up those reasons, but I suspect he must have at least what he considers a good and valid reason for denying you the information.

      If you totally don't trust him, I would look into changing doctors. I believe it is vital to have a real bond between patient and doctor and that bond is made up of trust.

      about 1 month ago
    • geekling's Avatar
      geekling

      Insist. Every record is yours. You and your insurance pay for them. Sometimes they try to stall because they want the doctor to look over your records first and explain them to you.

      It doesnt matter. The records are yours and you are entitled to see them any thime you like. You may be charged for copying but you ought to have your own copies.

      Best wishes. Please dont worry.

      BTW, did you switch from a different doctor?

      about 1 month ago
    • StaleyStacy's Avatar
      StaleyStacy

      Yes I switched places.but just for my chemo as it’s closer to home.to go the UM it’s 3 hrs and my after care was questionable after my second chemo.this doc is ok,still having trust issues.but I should have my cancer numbers,I just wanna know where I’m at.do I need 6 mnths of chemo?

      about 1 month ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I think you need a different doctor, @StaleyStacy, since you obviously do not trust the one you have. Do you have a medical background?

      about 1 month ago
    • StaleyStacy's Avatar
      StaleyStacy

      Thank you everyone.Live with Cancer no I’m not,just a scared cancer patient that wants a better experience.abd my docs to keep me informed.this hasn’t been a good thing at all.i feel like a lab rat.

      about 1 month ago
    • Carol-Charlie's Avatar
      Carol-Charlie

      What numbers are you looking for? I started chemo with a specific course of action. I was to have six 28 day cycles of chemo infusions.... Day 1 was I/V, days 2 and 8 were I/P infusions. Then I rested until the 28 day. The next day we started all over with Day1.... We did this for six months.... I had low bloodcount on the first cycle on day 8, got a shot of Neulasta...but no infusion that day. then on my next cycle... I never had a problem... but did received Neulasta shots after completing each cycle's day 8...(on day 9) I trusted my doctor completely... And here I am almost 13 years later.

      about 1 month ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      StaleyStacy, does your doctor inform you as to why he feels you don't need to know your numbers or why he (or she) is not sharing them with you at this time? As everyone has stated, they are yours, you can get them ... but I am curious as to why your doctor feels you don't need them at this point. I am totally guessing that he doesn't want you scared by or too encouraged by the numbers after barely beginning treatments. Good luck with whatever you decide.

      about 1 month ago
    • macfightsback's Avatar
      macfightsback

      I have had 1 gynecological oncology surgeon and 2 oncologists. I also.have a primary care doctor. Two different cities. All of them have always informed me of results and usually give me paper copies. Sometimes I forget to ask but I know they will give them to me next time. I also have copies of all my scans except the last one, I forgot to ask. (It was last week) Does your doctor's group have an online portal? If not they should be giving them to you during your appointments. I am a nurse and believe me everyone knows it. It is an expectation. Have you told them this is required and not an option? If you are waiting for your CA-125 they can take a few days to come back in my experience. So you either need to be very assertive or if you don't like your doc, switch your doctor. Most docs don't do CA-125 with each lab draw, a tumor marker. May be one has not been done recently. Just remember it is only a number. How your health is doing generally, how you feel and how you are functioning, physical exam, and other labs like if you are anemic, if your Neutrophils are low, if your platelets are too low, if your electrolytes are abnormal, if your kidney or liver functions are abnormal and if you are in pain and other factors, all figure in to how you are doing. My tumor marker was over 600 when diagnosed but did not go.up at all when I was diagnosed with my recent reoccurrence, confirmed it by PET scan cause my docs were surprised as I was. Hope this helps.

      about 1 month ago
    • pammyjo's Avatar
      pammyjo

      I always get my own copies directly from the lab and from radiology. I get both the report and CDs of the images from Radiology. I look at them before my appointment so that I'm prepared and can ask intelligent questions instead of being an emotional mess.
      LOL, my Drs have no choice about it. I don't need their permission!

      about 1 month ago

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