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Why can't I see scans?

SalliesMom
SalliesMom Member Posts: 16
edited February 2022 in Stage III Breast Cancer

I was diagnosed with IDC breast cancer last April. A mastectomy scheduled for later that month was cancelled by the surgeon after an MRI showed it had spread to my chest wall. Stage 4, I was told. I live in podunk, so I transferred my care to a major teaching hospital. Stage 3b, they say. I've had two more MRI's and the chest wall tumor appears to be shrinking (I'm told), but five lumps in the breast have not. They want me to have a "simple mastectomy" next month and possibly radiation for the chest wall tumor because they don't think I can handle a major thoracic surgery due to age, low BMI, and a lifetime of smoking. My issue right now is I have NEVER seen a single scan, xray or picture of what's going on inside my body despite repeated requests. My chest wall tumor originally involved five ribs and now encompasses two and with every dr. appt. I expect someone to walk in with side by side so I can delight in my progress. I can read the reports in my chart, but I want to see a picture so I can wrap my head around this. Is this normal? I don't want to be a pita and keep asking and I trust the doctors, but isn't it normal for a woman with such serious disease to want to see it, or are they trying to spare me?

Comments

  • lw422
    lw422 Member Posts: 1,375

    Hello ElaineKeno. I'm sorry to hear of your diagnosis. Do you have an online patient portal with the hospital or treatment center? I can log on to my patient portal, called "MyChart" and have access to all my scans, images, lab work, etc. online. If not I'd say be more assertive; you have patient rights to see your own records. (Assuming you are in the USA.) My best to you for a good outcome.

  • SalliesMom
    SalliesMom Member Posts: 16

    Thank you for your response. I have Epic My Chart and am pretty well versed in it, I thought. I even uploaded my first MRI to my second care team, but I don't see anywhere on there where I can see pix. In "test results" I can read the report (and then have to look up the meaning of every other word). The last report on 1/4/22 said chest tumor is continuing to decrease in size and enhancement but is difficult to measure and gave no measurement for me to compare. This is so infuriating - as if I'm not already stressed to the max.

  • parakeetsrule
    parakeetsrule Member Posts: 605

    It's definitely normal to want to see your scans! It's NOT normal for no one to show them to you, especially despite repeated requests. I've seen all of my scans, some multiple times. In addition to finding out if you can see them in an online patient portal, you can try asking the radiologist to go over them with you. My oncologist has gone over my scans with me but she warned me that she's not a radiologist, so sometimes she's not entirely sure what's what on the scan either, and she depends on the radiology report too.

    If you continue having trouble, see if your hospital has a patient advocate office that can help.

  • kbl
    kbl Member Posts: 2,639

    Elainekeno, after every scan I have, I go to the front desk of where I scanned and ask that a disk be made for me. I’ve got more scans than I care to, but I’ve always been able to get the disk. I have mets to all of my bone and bone marrow from my skull to my femurs. I can’t make out anything they see. It just looks like a spine to me. I still get them, though, in case I go somewhere different and they want to see the scan.

  • SalliesMom
    SalliesMom Member Posts: 16

    Thank you to everyone who has responded. I think I will call radiology today and find out if scans are available on MyChart and, if confirmed they are not, I will ask them to send me a disc. I don't want to ruffle feathers and I know I'm getting the best care possible, but I've been passed around from nurse navigator to nurse navigator and I don't want to deal with them anymore in the miserable state I'm in. Also super frustrating is these generic figures in my reports of a woman's torso showing a couple of red dots. I know it's not me and not even tailored to me. At my first care center the oncologist tried to tell me it was. Then I pointed out that the picture showed cancer in the left breast and mine is in the right. She and her assistant just looked at each other. That's when I excused myself to use the bathroom, and never went back. A few weeks later I received a CYA letter from the hospital saying it could "no longer treat" me because of my "documented behaviors". I feel like Elaine in Seinfeld in the episode where she's branded as a difficult patient. For all I know, they sent that letter with my file. I felt like saying, "Document THIS"! It's unimaginable to me that a CANCER patient could be treated so poorly! (Walking out was the smartest thing I ever did. Half of the nurses there quit, rather than get a Covid vaccine! Can you imagine?)

  • parakeetsrule
    parakeetsrule Member Posts: 605

    Good luck! I hope you can get them. Just be aware that it may not be possible to tell what's in them. Some of my scans are impossible for me to interpret. I have to depend on the radiology report to tell me what I'm seeing and where, so make sure you get the reports too. And I still had to look up a lot of the medical terminology to even understand the reports.

    Sometimes medical images seem backwards even if they aren't. A diagram of a body with cancer locations indicated will show a cancer in the left breast on the right side of the diagram, because the image is looking at you as another person would: from the front. Your left side is going to be the right side of a diagram.

    Also keep in mind that the images aren't always the view or direction you might expect. Some of my scan images for example are hundreds of individual slices from the top of my torso to the bottom, as though I'm looking down at the top of my head. It's not a single picture with an obvious "cancer here!" area.


  • minustwo
    minustwo Member Posts: 13,002

    elaine - Be prepared - Some places charge for getting a copy of the disc. And Parakeets is correct - I found the images impossible to read myself. The person who always explained it the best to me was the actual radiologist.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,648

    It’s good to know that I’m not the only one who can’t “read” scan images! I have no medical training beyond CPR so I will happily let my radiologist or mo guide me through the images. Perhaps someone with medical experience can read them.

  • muska
    muska Member Posts: 224

    I agree with all the above and I have no interest in seeing the pictures myself because I know I wouldn’t be able to read them.
    However, in my almost nine years of dealing with this and after about a dozen CT scans I have not yet had a chance to talk to a radiologist who wrote the report directly. How do you go about doing this? I do have questions

    Thank you

  • kbl
    kbl Member Posts: 2,639

    muska, I ended up in the emergency room last year for something unrelated to cancer. The radiologist wrote he thought I had bilateral hydronephrosis. During my whole process of my journey from 2013, I never spoke to a radiologist. I took a chance and wrote the practice this radiologist was from, and he actually called me. I’ve been in contact with him ever since, and he's been so gracious to answer any questions I have. That's the only way I knew how to do it. I was so appreciative he took the time and still does.

  • parakeetsrule
    parakeetsrule Member Posts: 605

    I haven't tried but I would ask my oncologist first and she would probably be able to arrange it. If not, she would tell me how. If she couldn't even do that for some reason, I would reach out directly to the radiology office myself.
  • muska
    muska Member Posts: 224

    Thank you, KBL and Parakeets for your suggestions.

  • SalliesMom
    SalliesMom Member Posts: 16

    Thank you all, again, and I am SO sorry we are all going through this. To this: "Sometimes medical images seem backwards even if they aren't. A diagram of a body with cancer locations indicated will show a cancer in the left breast on the right side of the diagram, because the image is looking at you as another person would: from the front. Your left side is going to be the right side of a diagram." I already addressed that. The dr. goofed. I was one day away from having a port implanted for chemo that would not have worked, acc. to my new drs., so, again, walking away was the best thing I could have done. Talking to a nurse navigator yesterday got me nowhere, and on the rare occasions I have tried to talk to a dif. dr. - like when I tried to ask the thoracic surgeon his opinion on my last MRI, my onc. gave me $hit, claiming she's in charge and I need to do everything thru her. I know what a rollercoaster ride this is, as I watched my best friend lose her battle ten years ago. I also know the little victories are few and far between, and I would think people who deal with this for a living would want us to celebrate any good news, and celebrate it with us, but not so. Adding insult to my injury, the NN sent me a resume of sorts describing her role in all of this and...guess what? THIS is her role! I guess I will focus on something else for now. Thank you all so much. So many different perspectives and experiences....

  • SalliesMom
    SalliesMom Member Posts: 16

    Thank you all for your answers. I googled my hospital and a few other key words and was amazed at how easy it was to order a c-d of a scan. Thanks to all of you, also found I can ask for a scan when having imaging done and - 15 minutes later - Voila! Thank you so much for all the advice. Cancer sucks!

  • wondering44
    wondering44 Member Posts: 247

    Salliesmom,

    Contact the Medical Records dept. at the hospital and ask if you request copies of scans from that dept. or an Imaging dept. The two may be separate. You may need to sign an Authorization Release. On the form, put "self" with your name and address as the third-party requesting the scans. You can request all dates of all scans to include mammograms, ultrasounds, CTs, MRIs, bone scans, etc. The dept. can print the scans on a disk or multiple disks while you wait. It only takes a few minutes. If you do this, be sure to confirm all requested scans are given to you to prevent repeated trips to submit another request.

    I recently did this last week. It took me six Authorization Release forms, three emails, and two trips to the hospital before they got it right. The disks are much better at showing you the imaging than the portal.