scanxiety and health portals
So a few issues- this has been a tough week. I feel great - no bone pain, better breathing and normal labs. I saw my ophthalmologist and my right eye mets have improved or resolved- GREAT news. Went for scans on Tuesday and had results sent to me through my patient portal today!!! The portal sent me an email and I looked - OOPS.
The bond scan showed marked expansion of bone mets throughout (as compared to a scan in March - chem started 6/10/2021) I was devastated and didn't understand as I felt so much better on chemo.
CT - MUCH BETTER - most lesions resolved or 1/2 the size in 3 months 2 weeks. The bone lesions were sclerotic, not lytic but still interpreted as worsening bone disease. Both tumors are ER/PR positive.
I sent an email to my oncologist and am waiting but I HATE bone scans and feel that the bone mets probably worsened in the 3 months before chemo (my clinic status certainly did) and that this scan reflects healing sclerosis in the setting on my chemo Paclitaxol. Did I already say that I hate nuclear (UNCLEAR) medicine.
Questions -
1. any helpful hints not to drop down the rabbit hole into depression around scans. I lost my appetite and slept for 12 hours last night.
2. do people ignore the patient portal?
Any other helpful thoughts?
thanks ladies
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Hi Bmpntherd,
We just wanted to stop by to say that we're so sorry to hear of the progression. We know it can be hard to get tough news, but try to take the good with the bad. It's great to hear your eye mets have resolved/are resolving. And that you FEEL good. Now that it's been revealed that the bone mets are not receding, perhaps there will be another route your doctors will suggest with a medication to target theses areas?
Try to stay positive and remember we are ALL here for you!
--Your Mods
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So in the end GOOD NEWS delivered BADLY by the portal. My oncologist is thrilled with my response and the increased uptake on bonescan is most likely healing (not active metastasis). Well documented in the literature when scanned 3-6 months after starting a treatment and occurs in about 20% of patients. Luckily, my oncologist had seen this before. Unclear medicine is using a sledgehammer and is very nonspecific.
I have started the process of advocating for a change in the PORTAL.
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Glad to hear your good news and relief
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wow, glad it did turn out to be good news rather than bad!
As to question #2 - sometimes I want to voraciously read my scan report and the doctors notes that are now being delivered to my portal every three weeks. And other times - not so much!
I have been deliberately NOT clicking to read the notes in my portal lately. My latest scan report was mailed to me before it was added to the portal but after I talked to my oncologist.
The report is still sitting on my desk unopened, even though I already know it was good, I just don't feel like digesting all the details right now.
Ignorance is bliss they say - right now, I am choosing to be blissfully ignorant : )
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Happy to hear the good news! As to the patient portal, I view it with mixed emotions. My medical system (Kaiser Permanente) seems to post test results to the patient portal as soon as they are available, regardless of whether or not you’ll be seeing or speaking with your mo shortly. I like this as I can quickly peruse the information and pick out anything that looks questionable or needs further explanation. Additionally, my mo emails an explanation to me within a few hours after the results are available. If I have any pressing concerns I email her and she always responds the same day. However I would be upset if I saw something that I didn’t understand and had to wait for an actual doctors appointment for an explanation.
So, for the most part I love getting test results ASAP through the portal and my mo’s quick responses to concerns I can see how having concerns that go unanswered for a period of time would be very stressful. I do know that some doctors will not allow results to be posted until they actually see the patient but I like knowing right away, even if I have concerns. Take care.
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My hospital now puts scan results in the portal immediately - with a caution about viewing the results without interpretation from your doc. Still, so far, I'd rather know right away. I do steel myself for the possibilities and make sure I'm in a frame of mind to deal with potentially bad news. If I didn't think I could handle it; I think I wouldn't look...but it would be hard.
Interestingly, since my bloodwork is done in office, I can't see the results in the portal until he signs off on it. This usually pertains only to tumor markers, since most of the other tests are processed immediately and he hands me the results.
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Glad to hear that it's good news as well. I have mentioned on other threads that bone scans are a complete waste of time for me. They never tell the full story.
On the issue of when we get test results, I'm in the camp of wanting them right away. I find it uber annoying when I have to wait for a physician to give me the news. I find it so paternalistic and a little bit insulting. (I do understand those who feel differently but there should be a discussion and an option to received or not based on one's preference.) It also doesn't acknowledge that those of us in the MBC realm often have a pretty good sense when something is brewing and waiting a week or two just adds to the anxiety, at least in my case.
Finally, I would much rather have a chance to read the report and prepare in advance for my meeting with my MO based on a shared understanding of my status. I can't tell you how many times over the last four + years I have had to reach back out to my MO with questions after the fact. I just don't think fast enough when I'm trying to digest news about progression...
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Sadiesservant - I'm with you on wanting test results as soon as available. I think it really helps to look them over and get questions or comments formed in your mind before seeing the Onc.
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bmp, you ask good questions.
Dealing with depression around scan time: the days before scans, I try to keep myself distracted by doing stuff I like: I might binge watch a Netflix series, or rent a really good movie on Amazon or find a book that is very engrossing. It also helps to get outside and take a walk or take a drive. Singing along to music turned up loud in the car is something that helps me. Retail therapy is good, too. Sometimes I treat myself to an item I've been wanting, like new shoes or a jacket, whatever. If you have friends or family members who lift your spirits when you're with them, seek them out, too. Journaling is another thing that helps. Write what you feel, it is a good way to explore your thoughts.
I also allow myself to be depressed, too. It's a normal response to what we're dealing with. Sometimes I have to feel the feelings rather than disregard or cover them up.
About the portals: the first couple of years after my diagnosis of mbc, I was too scared to look at any medical reports. This was before the patient portal became a thing. So I would not get a copy of my scan reports even tho I could. I only relied on what the onc said. It took several years before I was brave enough to get copies from the beginning and read them. Over time, I toughened up and requested reports after that. It still isn't necessarily easy, but I have grown more used to those feelings. Sometimes if it's just bloodwork results popping up in the portal and I'm heading into the weekend, I will wait till Monday to look at them. When scan results show up now in the portal, I've usually mentally prepared myself to read them.
None of it is easy. That's why it helps to have the support of other women on this forum who go through the same thing. I wish you the very best.
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Thanks so much. I was wrong and responding to the anxiety of the moment. I’m heading in to my 3rd set of scans this week and am more mentally prepared.
Also more in tune with what I can’t change and those that I can
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Stay strong! You can get through anything just hang in there.
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