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PETSCAN results over the phone

phlorada
phlorada Member Posts: 9

HI everyone...

I had my first PETSCAN. The Nurse told me I can get the results over the phone!! My tumor is large and is in the lymph nodes.I am scared the PETSCAN results. Is that normal that they would give me the results over the phone? Should insist on an appointment with my breast surgeon? I have not met with an oncologist yet...but I know my surgeon has met with him. Should I ask for an appointment with him??? Looking for some direction and help!!

Thank you!

Comments

  • Wigging2000
    Wigging2000 Member Posts: 56
    edited November 2018

    I’ve never had a PET scan, but I did get MRI results over the phone. If you are uncomfortable with hearing results over the phone, then ask for an appointment to be scheduled. Do you have a nurse navigator who you could call and discuss this with? I have found my nurse navigator extremely helpful.

    Waiting for test results is terrible. Did they give you a timeframe? I hope that you are able to speak with someone tomorrow and get a plan in place to receive your results that you are comfortable with.


  • phlorada
    phlorada Member Posts: 9
    edited November 2018

    Thank you for your response!! Yes, I have a nurse navigator. She told me I would have the results tomorrow or Friday. My concern is if I receive the results over the phone, I will be alone and not be able to ask questions to the doctor and have to wait for an appointment with the oncologist for a plan. I am thinking I want to wait until I can meet with the oncologist so I can hear the results and the plan.

    I appreciate your help!!

  • veeder14
    veeder14 Member Posts: 267
    edited November 2018

    You could ask for a copy of the report to be faxed or emailed to you. I get mine through confidential email from the provider. I'd request an app't with the breast surgeon unless your health care providers provide you with an Oncologist at the beginning of the process.

  • Kstinekd
    Kstinekd Member Posts: 12
    edited December 2018

    I agree it seems better for an appt for that. I got my pathology over the phone and it was a hard blow to take over the phone. As eager as I will be for my PET results, I will also be scared and may need the doctor there to talk me through options right away. Our minds spin too much with scenarios and it helps to have a knowledgeable teammate by your side through this like your oncologist. Hang in there. I'm right there with you!

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited December 2018

    My MO said it is my choice how I receive the results. She said some patients want to know asap no matter what, and so they ask to get a phone call. Others prefer to wait until a follow-up appointment to talk more in depth about the results.

    Waiting for scan results can be nerve wracking, so you're not alone in feeling that way. Also, don't be alarmed if something does light up on your PET scan - sometimes things light up, but that doesn't automatically mean "cancer." Hugs and best wishes for your results.

    Heart

  • sbelizabeth
    sbelizabeth Member Posts: 955
    edited December 2018

    I've had three or four PET/CT scans and if I hadn't received results over the phone it would have prolonged the wait, and I would have been even more anxious (and angry at the long delay). A phone call is faster and I didn't have to wait for an appointment.

    Long ago, when I went to my surgeon's office for what I thought was just a drain-pull after the lumpectomy, she broke the pathology results to me in person. It was terrible news, and I was alone. I was numb, in a grief-stricken and fear-filled haze, and I don't know how I managed to drive myself home. It would have been easier to receive that news at home on a speaker phone, with my husband by my side.

    But we're all different! If you feel strongly that you'd rather receive results in person, then ask for it. You get to be in the driver's seat.

  • edwards750
    edwards750 Member Posts: 1,568
    edited December 2018

    I’ve never had a scan but I can only imagine the anxiety of waiting for the results. I received my BC DX over the phone but admittedly I was already prepared because the radiologist pretty much told me that’s what it was. Although I hated to hear the DX confirmed it wasn’t a surprise.

    Idk which way I would rather receive the news. Being alone would be extremely tough and even over the phone because I certainly would have barraged the nurse with questions she couldn’t really answer. I have always heard if the nurse calls you it’s usually not dire news but I’m sure that’s changed since the BC epidemic.

    I had a friend who got the dreaded news at work and she went into hysterics. Understandable.

    Diane

  • sbelizabeth
    sbelizabeth Member Posts: 955
    edited December 2018

    When the nurse calls, it's good news. "The scan was negative, all is well."

    When the doctor calls...let's just say the physician wouldn't be wasting her/his time to deliver joyful tidings on the phone.

  • jo6359
    jo6359 Member Posts: 2,009
    edited December 2018

    I received my breast cancer diagnosis over the phone while working with a patient.. I was in total shock . I maintained control and continue to work for the next 3 hours . Prior to my dx, I was not even concerned about having a biopsy. My ultrasound report indicated high possibility of a benign cyst and I could wait 6 months for another ultrasound. I chose not to wait the 6 months and saw a surgical oncologist. He also told me upon examining my breast and comparing my ultrasounds and mammograms that there was a high probability I did not have breast cancer. He ordered a biopsy to be on the safe side. I'm so thankful he did it. I would have preferred being told by my doctor face-to-face. To make matters worse I was also informed it would be three weeks before I could see my surgical oncologist. After I raised all kinds of hell I was able to see my surgeon the same day. My surgeon was very surprised that my small mass was cancer. That's how my journey began. I did file a complaint with the cancer center. To be informed you have invasive breast cancer and then immediately told you have to wait 3 weeks to see your doctor was unacceptable. I felt it was handled very badly. Can you imagine the emotional state I would have been in if I had to wait 3 weeks with the knowledge I have breast cancer and no other information. I remained with the same cancer center and have been extremely happy with my surgeon, medical oncologist and radiation oncologist.

  • salamandra
    salamandra Member Posts: 719
    edited December 2018

    It was about two weeks for me between my biopsy result and my first oncology appointment. It was crazy making. I assumed it was normal. I wish I'd come on the boards sooner, I didn't know enough to realize I had enough information to know, or at least reasonably infer, that I was early rather than later stage.

  • WC3
    WC3 Member Posts: 658
    edited December 2018

    I prefer to get my results by whatever means are fastest. I can ask questions via the online system my health care provider has but I often wait for the appointment as to not increase my doctors' workload. I like to get copies of the images of my scans on my way out and take a look at them myself. I'm not a radiologist but I have some basic scan reading skills.

  • phlorada
    phlorada Member Posts: 9
    edited December 2018

    WC3 Hi Thank you for responding!! You get a copy of your scans on your way out...how do you do that???

  • WC3
    WC3 Member Posts: 658
    edited December 2018

    phlorada:

    I just ask the technician where I can get a copy of the images and at my facility they typically send them over to the front desk where the receptionist burns them to a CD.

    There are things it takes a well trained eye to spot but I am familiar enough with anatomy of certain body parts these days to spot the more obvious things, like a brain tumor a family member of mine had that the radiologist missed on her MRI. With PET scans you are usually looking for a glow because many, but not all, cancers are hypermetabolic so uptake the radioactive glucose based tracer quickly, but they can also yield a lot of false positives due to benign hypermetabolic tissue and artifacts due to the way the computer program constructs the image, and other things.

    For example, the region adjacent to my right shoulder glows. Why? Because that is the arm the tracer was injected in to and it did not have time to disperse before it was uptaken by the cells. So I advise against looking at the images if you are prone to anxiety. On fewer occasions PET scans can also yield false negatives.

    Whether or not you can read the images though, or want to look at the images, I think it's good to have a copy, because the facility won't keep them forever.

  • L-O-R-I
    L-O-R-I Member Posts: 56
    edited December 2018

    I had a biopsy of a small lump in my right breast and the results came back benign. A Ductal Papilloma.  I had a few of them in the past so wasn't worried.  I decided to have it removed. (2 inch incision just under the surface of my breast skin)  Almost a month later I got a call for a follow-up appointment with the surgeon in my small town hospital.  I assumed it was to make sure I was healing properly.  I didn't bring my husband with me because I had no concern.  I figured that if there was something to worry about, I would have gotten a call within the first week.  After all, it tested benign!  Well, . . . . . . . my surgeon broke the news to me that I had BC and that he had already booked a surgery to do a further lumpectomy and remove some lymph nodes.  He also said that I would have to follow it up with radiation but that if cancer was in my lymph nodes, my options would be a mastectomy and/or chemotherapy.  I was in total shock!  When I told him that I was shocked that it took almost a month to let me know, he said that it wouldn't make a difference over-all whether it was a month or even 2 months.  I looked at him and said, "Why the urgency to book this follow-up surgery for next week then?"  He just ignored my question.  Needless to say, I cancelled the surgery and found another surgeon in an entirely different hospital.  Maybe it was small-town vs Toronto, but I found it totally unacceptable!

    Lori

  • JPowell67
    JPowell67 Member Posts: 1
    edited January 2019

    Good morning ☀️

    I was diagnosed with breast cancer 1/15/19. I was experiencing sharp pains on the left side. I did a Pet Scan yesterday and we’re waiting on the HER2 results before discussing treatment. I’m single and live alone and I’m the first person in my family to have breast cancer. Any information anyone can share to help me prepare for this journey would be greatly appreciated

  • edwards750
    edwards750 Member Posts: 1,568
    edited January 2019
    So sorry you got the dreaded DX. Did your doctor offer any other information? I know you are waiting on the pet scan results. That will tell him a lot and you too of course.

    Try to be calm as best you can and stay busy. You are early in the process so once more results are available you will have a better idea about surgery, treatment, etc.

    It isn’t the death sentence anymore but we all know how scary this DX is/can be. Trust your medical team. If you have confidence in them it will make it so much better for you emotionally and physically.

    We are here to help. Once you know more post here and we’ll do our best to offer suggestions/advice based on our experiences.

    Keep the faith and keep us posted.

    Diane
  • elephanttriggers
    elephanttriggers Member Posts: 1
    edited February 2019

    Nice topic, Thank you.