Learning of a cancer diagnosis from email or online test report, and not from the doctor himself

A few references to some patients being informed of their cancer diagnoses in electronic and not personal ways have been mentioned in some earlier posts.

Some notes about it. A little webreading says that this may be happening more and more these days, as patients gain greater and quicker online access to their cancer test results, and sometimes patients actually find out their results even before their own doctors have seen them.

The prospect that patients may be learning that they have positive diagnoses for cancer from looking at an email, or from test data on a computer screen, rather than hearing it in actual words spoken over the phone by their doctors, is, for many, troubling.

Suppose, for example, someone receives an email from a testing lab with an attachment labeled "Oncology report."

Perhaps he was expecting this email or perhaps he wasn't.

so he opens the attachment and sees this:

https://imgv2-2-f.scribdassets.com/img/document/23648032/original/4b01c33617/1588315333?v=1

First of all, if he is unsophisticated at reading pathology reports such as this one, what is he to make of it?

Not everyone receiving a cancer test result is as knowledgable at reading one as we are, and for some doing so would be frankly bewildering.

Does he even know what "Adenocarcinoma" in red at the bottom of the report means?

So he tries to call the doctor's office hoping the doctor can explain it to him, but is told the doctor is unavailable, and will try to call him back later.

How does he deal with this?

Here's the story of a man who had essentially this experience:

https://www.bing.com/videos/search?q=cancer+diagnosis+by+email&docid=608006905157000590&mid=75491d00c2482786c7f275491d00c2482786c7f2&view=detail&form=vire&msclkid=d02fe88acfb811eca784d7c2f53ad6e5

Next, what about the whole matter of learning in this way that cancer is present, as opposed to answering a phone call from the doctor, to be so informed?

For some, even a phone call is too remote a way of handling this. An article pointing out the negatives of not using a direct person-to-person meeting to announce a cancer diagnosis:

https://www.asbestos.com/blog/2012/10/31/phone-diagnosis/?msclkid=4a70fa04cfca11ecac39f90e95285cc9

But then, perhaps there are some patients who honestly don't care how they find out. There may even be some who actually prefer a quick, short, simple text-on-screen notification, and that's it.

Then there's the fact, often left unmentioned, that some doctors themselves actually hate delivering bad news, and doing so by some form of text messaging minimizes the discomfort of doing so for them.

(I found some good write-ups on that particular subject, the reluctance of some doctors to deliver bad news, which I think is worthy of its own thread, and I will pursue that later).

But on the matter of patients learning on their own of a positive cancer diagnosis, the quick research I did would indicate some division of feeling on the topic, but maybe something like a 70-30 split in favor of person-to-person communication.

What do you think?

DjinTonic said...
T Knowing I had cancer before the first of my two post-biopsy visits meant I could stay level-headed and concentrate on the information and ask questions.
Djin

I agree. My experience was a little different but worked out very well. My doctor called the house and I was not home. He informed my wife (she had my HIPPA clearance), told her that it was G7 but very treatable and told us to call the office for an immediate appointment (he promised he would inform his staff to make that happen). We were there the next day but that gave us the time to let the shock wear off a bit and to get educated enough to get some questions together.

I don't think getting the news from a portal is a good thing but I do think getting a call and then scheduling the follow ups for more intense discussions is a good way to do it.

Jim

Each case is different ~~~ proximity of one's clinic, treatments needed, and patient preferences.

When I was first diagnosed, aggressive treatments started immediately. It was like getting thrown on a roller coaster, bypassing the ticket booth.

It was SO important to me to have my doctor there --- to provide CONTEXT --- background --- interpretation --- and explanation. Words can't convey how important that was to me, following a tough diagnosis.

My PSA was literally skyrocketing then ---- so immediate treatments were needed.

These days, my appointments are more "routine" --- so to speak.

Once, I looked at some lab results on my patient portal in advance, before seeing my doctor. It led to some needless worry --- as I found out later --- once I consulted with my doctor.

My lesson learned? For me --- I have found out that I prefer to visit in person with my doctor. He has a tremendous way of sharing and discussing lab results.

Two simple-to-implement strategies that work for me, that might help another reader here:

* #1: I stop by the lab ahead of time --- then run errands, have lunch, putter at a bookstore, and so forth.

By the time I return to the clinic, all my lab results have been processed --- and my oncologist and I can discuss results ON THE SPOT.

Timely data from that very day --- with context provided by my doctor --- and any questions I may have are immediately answered.

#2: Before we wrap up the appointment, my doctor and I briefly plan what we will talk about or look at NEXT TIME. He even takes a moment to type it into my patient appointment summary.

It's a way of laying "groundwork" --- it takes only a moment --- and keeps us looking towards the future.

Interesting topic, and it's great to read & share varied experiences!

Best to each & all ~~~
CYCLONE ~ # Iowa State University

“There may even be some who actually prefer a quick, short, simple text-on-screen notification, and that's it. “

That’s me.

I learned of my MRI PIRADS lesions, biopsy G6, and JHU review bump up to 3+4=7 from the patient portal. For that last one, I had called JHU and asked if it was complete, got a copy, and sent it to my CNRP who said they were still waiting for it at the local hospital. My seeing it first gives me time to do my education, hours of getting smart. The time with the doctor is short by comparison.

I just had the pathology results from my HoLEP posted, and frankly don’t need to hear anything from my doctor, it’s pretty self-explanatory (good news, BTW).

As an FYI, out of 140cc prostate the HoLEP removed 90cc. That’s a lot of prostate scoured out!

I’ve mention in the past how I found out about mine so I will only review the short version which is that it was a PA who ordered the biopsy, a urologist who performed it, and the results went back to the PA who did nothing with them. After 12 days of hearing nothing and not having my calls returned, I went to the Patient Portal and read them myself and used “Dr. Google” to help interpret them for me. Luckily, for me, I’d been practicing meditation for many years which helped me to just take this in stride as another in life’s bumpy roads and challenges.

I learned of my diagnosis via a phone call from the urologist. about 10 minutes later, I received a "sorry about the news" phone call from my primary doctor who noticed my rising PSA levels during an annual check-up and sent me down the PC path. I was particularly impressed by that primary doctor's call, since he was retiring, it was his last day at work, and the phone call was his last official bit of work.

I’m seeing tests results being posted much quicker lately as well, like, not even waiting for Dr to see it.

I have very mixed feelings on this issue. On the one hand, I feel like if I had a really bad result, I’d immediately need a conversation with the Dr, on the other hand the anxiety of waiting is a level of intensity that most all of us are familiar with.

AZ Guy said...
I remember calling the surgeon's office three months after my RP asking for the results of the PSA test. The nurse/admin (I wasn't sure) told me .4 and I was naturally distressed. But the nurse/admin said that .4 was good and within normal ranges and I found myself explaining to her that it was post RP and should be 0 and not good. She didn't understand and I just ended the conversation. But the news is the news and can't get dwell on how you receive it.

I had to explain that to my Primary Care Physician. (This should probably go in the Rant thread LOL)