Tuesday, August 02, 2011 Rhyolite asks

Q: How to get pathology and other test results sooner

I am wondering if you could help me understand why my surgical oncologist will not release my test results to me prior to when I have the follow-up visit with her later this week. I can see that the final test results are available in MyChart, but I cannot see the actual results (only that they are available). I have talked with 2 different people in the office to see if they could make the results available for me to see, but they tell me that some Doctors prefer to talk to people in person. The test results I am waiting for are: 1) HER2 FISH. This result has been available since 07/20. 2) MRI - one week prior to having lumpectomy an MRI was done on both breasts. These results were available prior to lumpectomy but I have still not seen the report. 3) Pathology results from surgery 1 week ago. I am anxious to find out if there was any spread to lymphy nodes. The Final Result for that test looks to have been available yesterday.

I realize there will be details in the reports I will not understand, but nevertheless I would like to see them sooner rather than later. I think I could be better prepared to ask questions for the appointment with her later this week. I notice the appointment is for 30 minutes so I want to make the best use of that time. I am not sure what to do. Should I just wait 3 more days to meet with her to find out the results, or would it be terribly inappropriate of me to make another call and insist that they let me see my test results before the appointment. I don't want to make the Doctor angry with me for being demanding, but also do not understand why I should be kept waiting if the test results are available now. I am pretty level headed person and do not think I need the 'bad news' broken to me in person. In fact I would prefer to read it ahead of time so I am not in shock at that appointment. Thank you for any thought you may have one this.

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Answers (2)

PJ Hamel, Health Guide

8/ 2/11 5:47am

You pose some really good questions and concerns here. Unfortunately, there's no good answer. Doctors, by long habit, like to go over test results with their patients in person. This stems from the days when patients walked into the office without any knowledge at all about the condition being diagnosed; so naturally, it made no sense for them to have test results they had no chance of understanding.

Now, with so much information available online, many patients become very well read on their potential condition, even prior to seeing a doctor. They're prepared to read and interpret their own pathology report,and interpret results of other tests - to an extent. It goes beyond "a little knowledge is a dangerous thing," but no patient will have the ability to read a pathology report or screening results with the same knowledge and depth of experience of her doctor - unless she herself has a medical degree.

MRI's are notorious for false positives; up to 50% of "suspicious areas" on a breast MRI will later found to be nothing to worry about. The FISH test can be inconclusive; and the pathology report, unless you know how to put ALL the parts together and see a whole picture, can be confusing. I can understand why your doctor doesn't want these results released to you prior to your appointment; and I can understand your need to be prepared.

I'd suggest your best bet would be to read our very thorough Guide to Understanding your Pathology Report. Take notes as you read; that should generate a list of questions for your oncologist. And, while I can't tell you not to worry - worry is totally natural, at this point - try to keep your stress level down by putting your mind on other things. Worry is eviscerating, and accomplishes absolutely nothing; so I hope you can talk yourself into relaxing a bit over the next few days. Exercise helps, as do friends. Good luck; I hope your tests show good results - PJH

Rhyolite

8/ 2/11 10:09pm

Here is a follow up to my original question and your quick response. Today my surgical oncologist called me to discuss the lumpectomy surgery pathology report. It turns out that she did not know that my test results were not being made available to me in the online MyChart application. She was in not in any way trying to withhold the test results for this pathology report, or for my prior tests. She had not contacted me for those reports because there was nothing of concern to report. So tomorrow I should be able to talk with the administrative personnel and ask them to do whatever they need to do to make the test results available for me to view. Sounds like this was just a computer application snafu and/or misunderstanding of procedures. I wanted to mention this in case anyone else runs into a similar situation. As my oncologist mentioned, these are my test results and they should be made available to me as soon as they are available. The reason she called me today (prior to our follow-up appointment in 2 days) was because the pathology report indicates that the margins are a little close (1 mm) and she would like to do another procedure next week to remove a little more tissue to get larger clean margin.

Thank you so much for such a quick response to my initial question. I could not believe how quickly you answered my question. You are providing such a great service. I have been reading may of the questions and answers here and it is really nice to get this type of information.

Phyllis Johnson, Health Guide

8/ 2/11 5:54am

Based on your interactions with the doctor's staff so far, it sounds like your doctor has a firm policy of discussing test results in person. Perhaps she has had bad experiences with nursing staff communicating complicated medical information over the phone. Is there any way your appointment can be moved up? You can also ask to speak to the doctor directly. Maybe you can get a quick rundown from her ahead of the appointment. I am also the kind of person who likes time to process information, so I understand why you want the basics now.

I also remember the two days between the time the doctor's nurse called to say that I had breast cancer and the first available appointment to discuss it with him. Those days were much more stressful than the days I had been waiting for biopsy results. The fact that your doctor has scheduled a 30 minute appointment to discuss these results suggests that she wants to be sure allow time for questions and to plan for treatment. Be sure to take someone with you to the appointment if possible to help with asking follow-up questions. I hope you get the best possible news (under the circumstances) from the report.

Rhyolite

8/ 2/11 8:19am

Thank you for such a quick reply. I appreciate your comments.

Phyllis Johnson, Health Guide

8/ 2/11 11:35am

Glad we could help. Let us know if you have other questions after you talk to the doctor.

Rhyolite

8/ 2/11 10:10pm

PJ Hamel, Health Guide

8/ 3/11 5:45am

Oh, that's good news; I'm sure that makes you feel better about the doctor, and the hospital's transparency re: medical records. What you report - not quite clean margins - is very common with breast conservation surgery. And your surgeon sounds like she's being extra cautious - which is good, with cancer! I'll bet this next surgery will take care of the problem.

I'm glad the pathology report didn't show anything unexpected. Best of luck as you continue down the treatment path. And thanks for your kind words - we're glad you found us! PJH

Phyllis Johnson, Health Guide

8/ 3/11 6:46am

Thanks for letting us know what happened. I'm sure this information will be helpful for other people in a similar situation. Your doctor sounds great, and I hope the next procedure gets the kind of clear margins that will set your mind at ease. Glad we could help.

Q: How to get pathology and other test results sooner

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