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Does anyone else look at scans labelled "To be opened only by referring doctor"?

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Posted 7/8/2017 6:36 AM (GMT 0)
My husband had a PSMA PET scan done yesterday, and our followup appointment is not until Monday. Of course, the first thing I did when we got the booklet of scans yesterday afternoon is to open the envelope and try to interpret the images.

I don't know why they put the sticky label on the envelope flap. Doesn't everyone open the envelope? (Not that it does me any good, as we will have to wait for appointment for analyses.)

Just venting again.

Edited after posting to put in latest PSA results. Now 5.9 in July 2017
Posted 7/8/2017 7:17 AM (GMT 0)
Yes, I admit I always look at all reports, though my PSMA scans weren't marked with any kind of privacy comment. I was also given the disk containing all the images to give to my local RO.

However I would strongly warn against trying your own interpretation of the images. I found the appropriate software, loaded the disks on my computer and had a look and nearly freaked out. There were some horrendous bright areas which I assumed were full of cancer, though I wasn't anatomically astute enough to work out exactly where they were, but they were obviously in major organs. I was a bit surprised that the accompanying report didn't seem particularly alarmist.

When my RO ran me through the results he explained that these super bright spots were in fact the kidneys and bladder which apparently respond to the Gallium 68 but were NOT full of cancer.

In fact he had trouble finding any responsive spots even with the report from the analysing RO who had said the take up was in the prostate bed.

So don't try to understand that which is beyond your level of understanding.

Chas
Posted 7/8/2017 7:38 AM (GMT 0)
I always open them and look at the report. I figure that we have paid for the reports and it's our bodies.

Given the our past history with busy doctors not reading results throughly (my husband's prostate cancer was missed this way, lucky I read the reports), I want to make sure that the doctor fully discusses findings with us. I point out areas of concern which the doctor hasn't discussed.

My thoughts are that if the referring doctor says that the report is unsealed my response would be that's I like being a fully informed patient. If he or she doesn't like that then it's time to find a new doctor. I have moved in the past from a PCP that advised me that I shouldn't worry my pretty little head by looking at the internet, I found that paternalistic and wrong.

An

Post Edited (An38) : 7/8/2017 1:42:56 AM (GMT-6)

Posted 7/8/2017 11:35 AM (GMT 0)
Its not that I personally try to interpret them, I just like to be prepared for whatever comes. I too freaked out at the first PSMA PET scan my husband had when I saw all the bright colours, however, our specialist explained it all thoroughly and why some areas, e.g. bladder, eyes, etc., always show up fairly bright. Its the waiting to get the correct information that I find difficult. So this time, the colour coding did not concern me, its the waiting, the waiting, the waiting....
Posted 7/8/2017 1:45 PM (GMT 0)
Of course! Up the revolution!

@Chask: I refuse to believe, on principle and despite years of counter examples, that anything is beyond anyone's level of understanding - if they put in enough effort.
Posted 7/8/2017 2:12 PM (GMT 0)
1. how can you not?
2. its probably a dangerous thing to do unless the windows are all locked or you are on a low floor
3. although everyone makes fun of me (in a good natured and well intentioned way) for being a lunatic, we are mostly all the same.nono

sorry, just had to add some levity to this discussionturn

After a recent scan, they put results on the patient portal, not just the bloodwork but scans. Worst thing ever. I get the emails, and i go in, I looked at her last scan the report and to make a long story short it referred to a swollen node, as probable mets. I was out of my mind, until the next day when i looked at it again, there was an ammendment, put there after the radiologist consulted with the referring Doc, that stated something completely different, with an explanation.
Next time there is a scan done, i intend to turn off the email feature, and wait till i see the Doc. yeah
Posted 7/8/2017 11:25 PM (GMT 0)
Yeah, I get the disks after scans, and just have to look at them.

in reality, they're awful. Those radiologists that read those things have a lot of training. I just can't believe all the stuff they see in the grainy images. I've slowly learned not to try interpreting the images myself. I've properly freaked myself out looking at a CT scan of my kidneys!

I'd suggest going ahead and looking at the info, because you probably can't help it. But my goodness, just wait for the "official" reading of the scans. It's much too easy to upset yourself with them!
Posted 7/9/2017 6:10 AM (GMT 0)
I believe in subject matter experts. However, if I had years of medical school and years of practice, I could read scans just like them...
Posted 7/9/2017 2:45 PM (GMT 0)
My uncle got cancer when he was only 26, the tumors were in his spine like a tree full of fruits, then moved to his colon and stomach, later to his hips.
The doctors gave him few months to live. He is here now 22 years later, age 48, cancer free. He has been under several serious surgeries (at least 7 as far as I remember) and tons of chemos and RTs. He is a very positive and happy person who really enjoys his life. He plays tennis these days and never stopped working during all these years except for days that he was unable to get out of bed. He still does an annual checkup.
What he recently told me about his long journey (after my father was diagnosed with PCa) is amazing: I would take the test results, scans..., whatever and put them on the car dashboard. I never looked at them. I told myself: this is not my business to deal with them, this is my oncologist job. He says he never bothers himself trying to interpret the results.

This may not work for anybody. But I can relate to that. He wants to enjoy any moment of his life and doesn't want to lose any of it in worries and doubts.
Posted 7/10/2017 1:37 AM (GMT 0)
I think 81GyGuy said it all in his post regarding Huffington article waiting for results.
Posted 7/10/2017 7:45 AM (GMT 0)

cspivak said...
Of course! Up the revolution!

@Chask: I refuse to believe, on principle and despite years of counter examples, that anything is beyond anyone's level of understanding - if they put in enough effort.

I have spent many years trying to understand why my wife needs 12 cushions on the sofa and 8 cushions on the bed (beside the 2 pillows) and I can't work it out. There are some things which are just not understandable!
Posted 7/10/2017 9:57 AM (GMT 0)
I don't think I could pretend to understand or interpret scans. But scans usually come with a report and I definitely read that and try to understand it and note any areas that I don't understand.

Everyone is different, some like putting all their faith in their doctors. My best friend has just been diagnosed with kidney cancer and she does not want to know anything about it. She wants the surgeon that the PCP referred her to to do whatever he thinks is right and wants to get on with her life. That is not the approach I would take and I would look for the best surgeon that I could find. But I respect her for her approach and I am very gentle and careful when she talks about her disease.

An
Posted 7/10/2017 10:46 AM (GMT 0)
I'm with An. I take a hard look at all diagnostics and tests and try to understand them the best I can. Dr. Google is helpful in interpreting the medical terms in the reports and, in any case, I feel it helps me become a better informed patient and one who is better prepared to ask questions.

Jim
Posted 7/10/2017 12:58 PM (GMT 0)
@Chask: Ah, but you have accepted the fact that she needs them, and that is wisdom.

😇
Posted 7/10/2017 1:08 PM (GMT 0)
And what, pray tell, is the problem associated with 12 cushions on the sofa and 8 on the bed???????

This is not a competition I know, but I hasten to the "boudoir" to take account of the number of OUR cushions!!

AH, life requires a tad of levity!
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