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CT results are in but can't see them :(


michellep

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My hubby had his CT scan on July 29th and apparently the results arrived with the onc doctor this morning. I called and asked if I could see them and they said not until his appt with the oncologist which is scheduled for next week! I don't understand why we have to wait....makes me think it's really bad. Plus, the pain he is having in his liver area is just awful....I want to know if there are mets or not and I want to know NOW. Is this protocol that docs make you wait until your appt for results? Seems to me that we are entitled to get a hard copy now or am I wrong. Has this happened to anyone else? The waiting is torture. Besides, what if the liver pain is just an infection...shouldn't he be on some kind of antibiotics? I'm really annoyed about this! Think I'll call the pcp and see if he has the results. He's much easier to negotiate with!

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My sister has been told before that they do not want her to have the report without seeing the doctor first. To a degree, I do understand this, as most people are not able to interpret the results and will get very worked up over things that they need not worry about. Though I have to admit, somehow she's managed to get a hold of them anyway. :) Her last one, I found that out when she emailed it to me, a week before her appt with her doctor. But even with that one, 2+ years into this, she didn't understand a lot of it and sent it to me to translate it to English for her.

I'm betting you will find people here that the doctor's don't mind telling them over the phone or them getting a copy without seeing them. But the policy at two hospitals my sister has had scans at has been that they don't want the patient having them before talking to the doctor. But like I said, at both places, she still has managed to get them.

It is frustrating though. She seems OK waiting and I tend to want to know NOW. Given the pain your husband is having, I can totally understand your wanting to know what the results are as soon as possible. One scan my sister had, she had an appt with rad onc an hour later. He brought it up on the computer before talking to us and told me all I needed to know right there. I wish all scans could happen that way.

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Michelle,

I have had a CAT scan burned to a cd and taken it with me after the scan. I justed popped the cd into my computer and there you go. My ONC has her nurse call me the same day I get the scan and tell me how the scan came out. Does that mean hubby had a bad scan? I don't know, some doc's are just real jerks. This I do know, when they first told me about my spot? I was going crazy wondering what it was. I asked myself maybe it's better not to know, or is it? When they told me it was sclc, it was better not to know. I think you are much more couragous then I am. Prayers are on the way!

Dana

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There are a lot of doctors that don't release the reports until you are in their office- then they are yours to get copies of or take with you. I am pretty sure that's because we aren't medical professionals and they don't want us trying to read the results ourselves. Also, if there is something of concern, they want to be able to talk it over with you in person.

I know there are some doctors and cancer centers that will give you results over the phone- maybe they can do that for you before your office appointment and maybe they haven't yet because your doctor hasn't had a chance to look them over.

Good luck, I hope you get some answers soon and I hope they are positive ones.

Please keep us posted!!!

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I got the reports from the pcp a bit ago. I noticed that the imagining place "did not" compare to the prior ct scan from May. But I looked at these closely for any differences I could see for myself.

When my husband was diagnosed it was in the right lung with pleural effusion. The reports from the full body scan he had then showed all other areas were clear. The one I got today of the abdomen showed multiple metastases involving the iliac bones, sacrum, lumbar and thoracic spine. So......obviously here we go again.

It's difficult because as many of you know he will not discuss this disease "period" and I'm really feeling overwhelmed with all this information and not having the "needed conversation" with him. I still wonder sometimes whether he is in total denial or if he is just simply trying to protect me. Truth is....if it's protection, I don't need that. I need for him to share with me what he's feeling and let me do the same.

We have an appt with the onc next Wednesday, so I suppose we'll learn more then. And maybe they will have been able to compare to the prior scan.

Well, I've rattled on long enough to you guys for now. Hopefully you won't run when you see my name on so many posts huh?

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Michelle,

I'm sorry to read about the mets and so very sorry that you are having to carry this load all by yourself. We don't get results from Mom's oncologist until we see him and that's ussally a week after the scan. He wants to be able to help us understand the results. I don't mind that, I think it is helpful to be able to talk with him, but I do wish she didn't have to wait a whole week.

You can only do what you can do. You can't make your husband talk about things he can't or won't talk about. At some point you have to accept that you will do what you can do, but you can't control other people.

((((Michelle))))

Susan

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Michelle,

Would never not read your posts. I'm just so sorry you are having to go through all of this. If hubby won't talk we sure will! So you keep posting! Scream and yell and cry all you want! We are here for you! Sending you prayers for strength and serenity!

Dana

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  • 3 weeks later...

Picked up the ct comparison report yesterday. It says.....improvement....improvement and more improvement :D:D It also says possible bone mets and says another bone scan should be done. I don't believe it! The last bone scan was in May and it just said arthritis. So......I shall do a happy dance.....please join me friends? LOL

PS I slept like a baby last night. First good night in months. And today I feel like I'm 20yrs old again! :D

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Take the news as it comes and not one minute before!! Happy Dance indeed!! I will keep your mom in my prayers for her upcoming bone scan and hope that it is just arthritis.

YAY for improvement and prayers for continued improvement!!!!!!!!!!!!

Keep us posted!!

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