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If you haven't heard - Cures Act 2020


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Hey Everyone,

So Fed gov't apparently passed a new law where healthcare providers now must share the test results with the patient at the same time they send it to the ordering physician.

MyChart (online patient portal) had this link - I haven't read it cuz all matters to me is now I get the result even faster.  According to the little blurb on MyChart, this law went into effect on 10/25/20 and I've gotten all (CT, PET, blood work, but NOT mammo, hmmm) super fast.  The CT tech said the doc *could* block it, though, so there's that...

MB

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Personally, I think stuff like that should be up to patient and doctor, with patient getting final say (they are patient's tests, after all). As long as results aren't unduly delayed, I'd sooner get them from my doc than from the portal. 

I just dropped my NP a note to ask her to "release" the labs from last week--which had already been discussed with me but I hadn't seen all the details. She released them within 5 minutes of the request. 

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I can actually see both sides of the issue because some scan reports can be super scary without medical evaluation and explanation. My oncologist has to sign the report and confirm he discussed it with the patient before it can be uploaded. 

For some reason my 10/28/20 PET/CT scan report never was uploaded to the patient portal, so I had to call and ask that it be mailed to me. I need to share all of my cancer-related records with the World Trade Center Health Program. 

The following is a little off topic: although my oncologist said I was stable in our last call, the report showed no tumors, and it says that lymph nodes and my right lung are "normal", which is a huge improvement. It only shows paramediastinal air disease in my left lung with a maximum SUV in the region of 2.8 (compared to 3.1). I'm going to ask the NP next week if this means I'm on my way to NED or whether the radiologist left out some stuff. 

On the other hand, the spirometry test I had at my initial WTC Health Program workup last month says that I have the lungs of an 80 YO, lol. (I'm 67.) 

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Personally, I prefer my doctor discussing the results with me.  Sometimes when I read them myself (without context) I feel like I'm terminal with so many things until the ONC explains it all then I'm calm again.

Lou

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Funny I should come across these posts today. 

I had a PET/CT scan yesterday to show the chemo/radiation treatment results from September through October. Sheilds, who does the scans, usually posts the images and the report. I was eager to see the report today before my doctor's appt. tomorrow but it wasn't available. While the full body imaging is probably too large, the previous diagnostic report was made available within a few days. I am fortunate to have doctors that will go over the details and answer any questions I have. When I read the last report online, it lacked the context and depth a physician could offer. What is very valuable for me is the access to the images, MRIs for example, from a few years ago and reports that document a timeline of conditions.

As for me, I am not very optimistic as to the results even though I would like to be. I have been experiencing a much worsening shortness of breath and pain, or more specifically, an ongoing ache at the radiation site on my chest. So, as usual, anticipating the test results may be worse than the actual facts. The next step proposed a month ago is immunotherapy with Infinzi. We'll see. My appointment are with the Chemo doctor on Thursday and Radiation doctor on Friday.

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Personally, I like this new law. I was able to review my PET scan day after I took it and before my scheduled visit with the onc.  I am so glad I was able to because my oncologist canceled my visit last second.  Tho far from an expert on PET scans I do know enough to understand there does not appear to be any additional tumors.  If not for that I would be a wreck.

Peace

Tom

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I like getting my labs and scan results through the portal. My Onc or her PA, always go over the labs that are complete with me within a half hour or so after they were drawn. The other values, like TSH, PSA, etc. that come in later, they have a nurse to call me about. Sometimes they are posted before they call and I have looked at them. As for the scans, I always get a copy of the disc right afterwards. It doesn't have a "read" yet and I don't usually see that until after my Onc has discussed it with me, which is typically the next day or two. They have a three buisiness day protocol before posting the results of imagery results.

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Well the CT/PET scan showed no activity in my body other than "normal" inflammation caused by the radiation treatment that ended Oct. 28.

It might have been problematic for me to determine what a 3.3 degree of activity meant at the targeted upper left lung location. Both doctors were upbeat

with the results.

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