CT Scans and Bone Scans

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DancingElizabeth
DancingElizabeth Member Posts: 415

Hi All,

I'm having my first CT Scan - tomorrow - 6/20. And, first bone scan - 6/27.

I've read a lot of your posts on here and MANY of you have been doing well - for many years. And, that gives me much needed hope... and inspiration....

But - right now - I am very scared of getting these scans and am crazy/obsessed with every minor pain or twinge in my body.... (not scared of doing the scans but scared of the results).

I have tried researching the internet - on how or when MDs deliver the news of these scans. Did some of you - find out - the DAY of the scan? Or how many day(s) go by before you get the results?

And, are the results given over the phone - or do they call to tell you that you need to come in to "discuss the results"? I'm most afraid of getting a call like that....

I have so many scenarios running through my mind... I am Stage3A - so I feel that unfortunately ups my odds on mets....

Comments

  • zarovka
    zarovka Member Posts: 3,607
    edited June 2016

    Hi Scared -

    The results are available in 24 hours. I usually arrange to get my scans faxed to me. I read through them them before I talk to the doctor. Not the usual sequence it seems. I see some people getting a phone call and other people having an appointment with their oncologist schedule a day or two after the scan.

    I want to process the information, drive the conversation to my concerns, have all my questions lined up.. It's too overwhelming to take in good or bad news in a 30 minute meeting much less a phone call. So I have arranged with my doctors to get the full report as soon as it is available.

    The main thing to know is that if scans are "bad" and you have metastasis there are a lot of options for treatment and a lot of tough brave women here ready to show you how its done. Good or bad, we'd like to hear back from with all your thoughts and questions.

    I have all kinds of aches and pains and my cancer is receding at the moment. I am sure I will have aches and pains if and when it progresses. If you have aches and pains that worry you, you need to get a scan. You've done that. Now let it go. Whatever is coming, you can deal with it.

    Frankly if you have mets it's best that you know. It seems like so many people are mis-diagnosed. I would have been as well if it weren't persistent. Push until you feel confident you know what is going on.

    >Z<

  • jensgotthis
    jensgotthis Member Posts: 937
    edited June 2016

    I have learned to ask my MO or RO as appropriate when the results will be available and set an appointment for that day, get a copy of the report in advance so that I can read it and have questions ready, and try to tell myself 'what is, is.' If there is something bad on the scan, I know there will be options to discuss so worrying a lot now won't help.

  • indenial
    indenial Member Posts: 504
    edited June 2016

    I know how scared you are, because that was me just a month or two ago!!

    My onc knows that waiting for test results is pure agony for me, so he and I have made a deal that he will call me with results the same day of tests -- usually within a few hours. My end of the deal is that I have to call him that day and remind him I'm having XYZ test, because he can't possibly remember when *I* have tests scheduled. :) So for basic scans, you should be able to get the results within 24 hours, but some doctors prefer to deliver results in person. I've insisted I'd rather hear over the phone. You can also schedule an appointment for the day after any tests, so you can get the results in person if that's what you prefer.

    OK so here's what happened to me, and although I did end up stage 4, I hope this story doesn't scare you (feel free to stop now if it will be too much!!) but I was looking to hear these kind of details before the mets diagnosis.

    I was stage 1, 3 years ago. By November of this past year, I was having significant, disabling pain in my hip and neck. Finally my primary and onc agreed we needed to do scans. So I went for a bone scan. Doc called me the same day and told me the scan was clean. PURE RELIEF. However, what I didn't realize is that it was a preliminary report... I'm still not sure exactly what happened, but an addendum was added to the report that showed a small spot on my rib. It's an unlikely first place for cancer to metastasize, and my onc didn't even tell me about it til my next appointment in March of this year. He said it was probably nothing but he wanted to repeat the bone scan. He called me the same day to tell me it showed a slight increase in activity, but they were still thinking it was not cancer. However, because I was wanting to get pregnant, he wanted to be thorough, so he sent me for a CT. That was also kind of ambiguous. He consulted with another doc and called me the next day to tell me, "It REALLY doesn't look like cancer, but because you want to have a baby, let's just do a biopsy to put this to rest." Cue the panic!! I kind of felt by that point that it must be mets, but was still hoping my doctor was "just being thorough." The biopsy results took a really long time... a week and a half? My husband finally called for the results because I was too scared to. I could tell in seconds from the look on his face that it was positive, and I grabbed the phone to get the details.

    That call was one of the worst moments of my life... but so far, being "stage 4," while horrible, hasn't been as bad as I expected. It's kind of like my worst fears have been realized, and now there's nothing else to fear. I am just living my life, preparing for the worst but hoping for the best. Treatment is far easier than early-stage treatment so far. I'm lucky in that I only have one met, in my bone, and it seems to be slow-growing, so I have it easier, I have time and am relatively healthy compared to some of my stage 4 sisters. I know it will get worse and harder down the line, but I am just enjoying my life in the meantime. I didn't know that it was possible to go on after hearing such bad news, but I am proof that it is, for some of us, possible! I hope you get great news!! As you can see from my story, the spots where I was having such debilitating pain, didn't even show cancer, and the spot that did have cancer wasn't particularly painful.

    I also hope that if you get bad news, you realize you can still live for years or even longer as stage 4. There are some here that have been around for 10, even 20+ years since their mets diagnosis!! All the survival stats were gathered in 2001 I believe? So many new treatments have come out in the last 15+ years and this can be treatable for a long time. Hugs!!

  • car2tenn
    car2tenn Member Posts: 515
    edited June 2016

    Well I have to respond to in denial. My first oncologist delivered the news to me that the biopsy was malignant over the phone by an NP I did not know. The announcement of Stage 4 was delivered three days before Christmas 2013 over the TELEPHONE so the doctor could go on her Christmas trip. I had no more contact from anyone medical for 3 weeks. I took 2 more months of this abuse from a very major University Cancer Center before I walked quickly to another oncologist. Anyway, I will not put up with waiting a week for word of scans. I go to U ofFlorida at Jacksonville, Fl to the Proton Center for all radiology.. I love the personnel who deliver the news to you of PET and Ct as soon as possible. Then you get to talk to the radiologist about the results. It is the only way I can deal with the results is to get the results good or bad as soon as possible. After news of progression in Dec o 15, I had taxol and HERCEPTIN and am now in remission after 2.5 years of treatment. I actually have an appointment with an oncologist in another city than mine next week to get another opinion on my treatment during remission. She is using HERCEPTIN only for this remission treatment and I want to know if I should be doing something else. I am fortunate to feel absolutely wonderful and want to keep it that way. From Music City, Carolyn

  • DancingElizabeth
    DancingElizabeth Member Posts: 415
    edited June 2016

    Thanks Everyone....I had the CT today....and still waiting for the results to show up in the "my health online" portal....but still.......not...there......

    I hope that's *not* because it's bad news...now it's almost 10:30 pm PST.....and worried about tomorrow.....

  • indenial
    indenial Member Posts: 504
    edited June 2016

    I've had results not show up in the portal and only some of them were bad, most were good! I think they just wait for the doctor to sign off before they make them available in the portal? Not sure. But I hope you get results today and that they are good! Please let us know!!

  • pajim
    pajim Member Posts: 2,785
    edited June 2016

    Scared, often the results will not appear in the portal for a while. They want you to discuss with your doctor first. Do you have an appointment? Or a promise that they'll call you?

    After lo these many years I schedule my scans for the day before my doctor's appointment. Often he e-mails me the results in advance (we've been at this a long time -- I wouldn't recommend it to everyone). But the results don't appear on the portal for a week.

    I hope the CT turns up benign.

  • HLB
    HLB Member Posts: 1,760
    edited June 2016

    This probably sounds crazy but I don't even look at the scan reports until my onc appt and let him explain. The first time I did this he said it was a really good scan with no progression, and when I read it all I saw was lesion lesion lesion. I am better now at knowing how to interpret, but I still prefer to do it that way.

  • DancingElizabeth
    DancingElizabeth Member Posts: 415
    edited June 2016

    Thanks-you All for your support - Good news! Scan was "fine" and "no evidence of cancer spread".

    However, still have that bone scan next week...

    Thanks again for listening to me!

  • DancingElizabeth
    DancingElizabeth Member Posts: 415
    edited June 2016

    Thanks-you All for your support - Good news! Scan was "fine" and "no evidence of cancer spread".

    However, still have that bone scan next week...

    Thanks again for listening to me!

  • zarovka
    zarovka Member Posts: 3,607
    edited June 2016

    yay.!!!!!!!!!!!!!!!!!!

  • Tigwin
    Tigwin Member Posts: 275
    edited June 2016

    Hi Scared67,

    Right here with you! I had a Bone scan and MRI last Friday and a PET/CT scan this Friday. I am six months into stage IV breast cancer which has metastisized to the bones. It is report card time. I look at it this way, if we are on the correct medications, we will see improvements and if not, then we are at the beginning of my wellness plan so perfect time to make some adjustments to the medications. I go in with the most hopeful and positive mindset I can but try to be prepared as best as I can as for any results. I don't expect to hear my results until sometime next week. I know my oncologist will want all results before she shares the entire story. My motto is Let go and Let God. Takes the pressure offme when I trust God has a plan. Thrilled to hear you got amazing results on your scan!!! Great to hear the positive!! Let's keep the positive energy going for both of our upcomg scans!!

  • DancingElizabeth
    DancingElizabeth Member Posts: 415
    edited June 2016

    Well...it turns out the RN was NOT FORTHCOMING with me. She told me it was "fine".

    BUT left out the part about the 6 mm NODULE noncalcified (which is bad according to Google)found in my right upper lung and that a 3 month follow-up CT is recommended.

    My breast cancer was in my RIGHT breast, so knowing I have a lung nodule on the RIGHT side - to me is BAD news.

    I am so angry right now....and it's after hours - so I sent my oncologist a couple emails......

  • Jojo0529
    Jojo0529 Member Posts: 193
    edited July 2016

    was it a peri fissural nodule? They are benign and common esp in former smoker

  • Tigwin
    Tigwin Member Posts: 275
    edited August 2016

    forgot that I posted I had scans and I was waiting for my results. I got the results and I am responding very well to the treatment. Scans looked good and tumor markers continue to go down. Wishing you all good health and full recoveries!!!

  • zarovka
    zarovka Member Posts: 3,607
    edited August 2016

    Congratulations Tigwin. here's to many more excellent scans. What is your treatment protocol?

    >Z<

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