When is information too much information? - 1268265

pmharper
Posts:5

The large multi-disciplinary facility I am being treated at has recently introduced a web based patient portal where, among other things, they post the results of tests about 2 weeks after the appointment with the oncologist. I read it this morning and then spent the next half hour looking up medical terms since I had no idea what most of them meant. (ie linear scarring and atelectasis in the bilateral lung bases.
Multiple, stable bilateral pulmonary nodules. Mild centrilobular and paraseptal emphysema.
Redemonstration of a cystic lesion in the caudate lobe of the liver and incompletely characterized right renal cyst.) I have no way of putting any of this in context and I won't see my doctor for another 6 months. I have always believed that the more information a person has about their condition the better, but I am now wondering whether having access to details that I can't really interpret is helpful. There really is no question here....just wondering if any one has an opinion or about whether this new "service" is really a good idea. I should note that at this recent appointment I was told NED at 4 years in! Now that I understand!!

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Reply # - January 27, 2015, 03:34 PM

catdander
Posts:

Hi pmharper, Welcome! I think that last statement is really optimal not to mention absolutely wonderful.

As for your thoughts, I think having access to info is a great idea if you know how to use it. One thing to know is radiologists who read and write the reports on imagings like CT and PET scans are doctors who don't see patients but are specialists in reading the scans. They don't have info on you except previous scans so they write everything they see with conclusions of possible implications. A lot of the info can be nonspecific and not pertinent to cancer or really anything.

If you end up having questions your oncologists and other care team members are best able to know what implications may be.

I hope that helps,
Janine

Reply # - January 27, 2015, 03:39 PM

cards7up
Posts: 635

Actually, the radiologist that reads your scan, compares it to your last scan. I always get copies of my scans on CD and will take the time to research anything I question or don't understand. I prefer to have this option.
Take care, Judy

Reply # - January 27, 2015, 04:56 PM

karenb
Posts: 31

I love having the portal and make copies of all my documents. I am not sure the doctors here have time to go through all that terminology but I googled some of it last time and found a site that explains each term and the implications.
Congratulations on NED!!!!

Karen

Reply # - January 27, 2015, 06:23 PM

pmharper
Posts: 5

Thanks for the input folks. I guess I would have liked to have had the info in the radiologists report while I had the opportunity to discuss it with my oncologist. I won't see him again for 6 months and while I am thrilled to have reached the 4 year mark with NED, I can't help but wonder about the cysts and lesions and nodules noted in the results. As I said in my original post, it would be helpful to have some context in which to digest the information. I'm left wondering if I should follow up with my PCP or am I just looking for problems where there aren't any. It's just a bit unsettling.

Patsy

FYI...diagnosed in 2011 with Stage IIB lung cancer. Lobectomy (lower right lobe) in April 2011. Adjuvant chemo (cisplatin and alimta) 4 sessions.

Reply # - January 28, 2015, 08:46 AM

catdander
Posts:

Hi pmharper,

It's not unusual for people to have cysts, lesions and nodules even without ever having had cancer but it's even more believable that someone whose been treated whether by surgery, radiation, chemo or any combo thereof to have scarring that show up on scans. Only doctors caring for you can say what they think these represent. It shouldn't be a problem to see or speak with your PCP about it. It's extremely unlikely that your onc would have said you were NED if he/she felt there were reason to believe otherwise. Since you’ve had cancer it’s likely these aren’t new and there’s no harm in asking about them. Having made the info available they also must have a plan in place to handle questions like yours. I’m very glad doctors are opening up to patient centered care. Mine is now offering an online patient portal like you described. It’s the only way to keep up with all the pertinent info.

I like wikipedia for defining things. Though there is a degree of possibility that any piece of info has been adulterated very recently. Even if that happens the other authors are usually quick to fix any bad info.
Pubmed is another site that's accurate.
UK health system has a public portal that has very good info on all kinds of things related to cancer care.

We have info on lung nodules found on imaging that isn't thought to be cancer (people have CT for various reasons and incidentally find they have nodules on the lung and like you they become worried and ask about it.) Our Lung Cancer Work Up forum are full of similar questions. For example, http://cancergrace.org/topic/lung-nodules-3

Yay NED,
Janine

Reply # - January 28, 2015, 09:17 AM

cards7up
Posts: 635

Or you can do what I just did. When I got home and looked at the scan myself and had a question, I called the onc nurse for my doctor. Your PCP really isn't following you the way your onc is. Ask the nurse or ask her to discuss with the doctor and have them get back to you. No office visit needed.
Take care, Judy

Reply # - January 21, 2016, 10:23 PM

gilbertofarthing
Posts: 6

Sounds resourceful karenb!!!! I like that portal idea which you have suggested. It will make easy for us and for doctors as well to have previous reports available all time when they needed using the portal.

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