Help me stay calm during medical uncertainty
September 4, 2017 6:03 AM Subscribe
High amylase levels on health check 3 years running --> see doctor just in case --> CT scan today, Monday --> results to come Friday. No symptoms to speak of now or earlier (except now my stomach hurts, jeez...), not sure what or how much to worry about. Not in search of medical advice, just ways to not panic over the next 96 hours.
Text above the fold pretty much covers it, but: we have a yearly health check at work, and for the 3rd year running my levels of amylase were high (190-200 when the normal range is about 40-130). So I went to the doctor (a large general hospital), and ended up seeing a young man who talked at about the speed of light, explained absolutely nothing, and sent me to have a CT scan (today) with results to come Friday.
I have not been ill or had discomfort to speak of over the last few years (you know: colds, headaches, occasional stomach trouble but no nausea or extreme pain, that kind of thing only); I'm pretty sure I'm not ill now, except that I'm so tense my stomach hurts! A cursory look at the Internet suggests that high amylase is mostly pancreatitis, which, doesn't seem to be fatal at least...
What I am terrified of is pancreatic cancer, which is what my father died of, although it's not supposed to be hereditary as far as I know. I am about equally frightened of a) dying of it and b) having to tell my mom about it... I mean, my father's experience suggests that if high amylase = pancreatic cancer on the spot, I would not be sitting up writing this question right now, but even so.
Not searching for medical advice, just for ideas on how to stay calm and not be too miserable between now (Monday night) and Friday afternoon when I get the CT scan results from the doctor; how to avoid tying myself into knots over WHAT IF, but it's probably not, but it COULD BE, but, I CAN'T DEAL, etc. etc.
Many thanks.
Text above the fold pretty much covers it, but: we have a yearly health check at work, and for the 3rd year running my levels of amylase were high (190-200 when the normal range is about 40-130). So I went to the doctor (a large general hospital), and ended up seeing a young man who talked at about the speed of light, explained absolutely nothing, and sent me to have a CT scan (today) with results to come Friday.
I have not been ill or had discomfort to speak of over the last few years (you know: colds, headaches, occasional stomach trouble but no nausea or extreme pain, that kind of thing only); I'm pretty sure I'm not ill now, except that I'm so tense my stomach hurts! A cursory look at the Internet suggests that high amylase is mostly pancreatitis, which, doesn't seem to be fatal at least...
What I am terrified of is pancreatic cancer, which is what my father died of, although it's not supposed to be hereditary as far as I know. I am about equally frightened of a) dying of it and b) having to tell my mom about it... I mean, my father's experience suggests that if high amylase = pancreatic cancer on the spot, I would not be sitting up writing this question right now, but even so.
Not searching for medical advice, just for ideas on how to stay calm and not be too miserable between now (Monday night) and Friday afternoon when I get the CT scan results from the doctor; how to avoid tying myself into knots over WHAT IF, but it's probably not, but it COULD BE, but, I CAN'T DEAL, etc. etc.
Many thanks.
Best answer: You've had exactly the same high readings for three years and you've been absolutely fine! You're in great health, so why are you worried? It's not like you've had pancreatic cancer this whole time and you just didn't know it (according to my oncologist brother if you had pancreatic cancer, 95% of people die within a year, so the fact that you're still alive and healthy after years of these readings suggest strongly that it's not that, or you'd be long gone by now.)
It's a high reading, it's probably quite easily explainable (I'm not a doctor so I can't help you there) and your doctor is just doing their job, covering their ass and being thorough. Grab some friends, go out and keep yourself busy to take your mind off it. Also it may help to phone the doctor back and get him to explain what it was you couldn't understand. I bet if it was all clearer you'd be less frightened.
posted by Jubey at 6:46 AM on September 4, 2017 [2 favorites]
It's a high reading, it's probably quite easily explainable (I'm not a doctor so I can't help you there) and your doctor is just doing their job, covering their ass and being thorough. Grab some friends, go out and keep yourself busy to take your mind off it. Also it may help to phone the doctor back and get him to explain what it was you couldn't understand. I bet if it was all clearer you'd be less frightened.
posted by Jubey at 6:46 AM on September 4, 2017 [2 favorites]
Best answer: Deepest sympathies, huimangm. I was in a similar place to yours recently, and it wasn't fun. I hope your outcome is as good or even better than mine. (I turned out to have a serious but very treatable problem and am now doing well.) Here are some things that might be helpful:
Schedule yourself this week. Fill in downtime with enjoyable diversions, which can be as simple as a walk, rereading a favorite book, or Netflix.
Stopping thoughts is hard, but you can develop counter-thoughts to deploy in response to worries. Remind yourself that you are taking care of yourself by getting this test. That it will be good to know what's going on with your health. That medical care is advancing all the time.
Deep breathing. Seriously. Practice relaxation when you're not worrying and then do it when you are.
Finally, I wonder if your interaction with Young Dr. Fasttalk is making things worse for you. Not understanding what someone is saying while not being comfortable with how he's saying it is not a good place to be. If you have to continue involvement with someone in his specialty, can you change to someone else?
posted by ALeaflikeStructure at 6:46 AM on September 4, 2017
Schedule yourself this week. Fill in downtime with enjoyable diversions, which can be as simple as a walk, rereading a favorite book, or Netflix.
Stopping thoughts is hard, but you can develop counter-thoughts to deploy in response to worries. Remind yourself that you are taking care of yourself by getting this test. That it will be good to know what's going on with your health. That medical care is advancing all the time.
Deep breathing. Seriously. Practice relaxation when you're not worrying and then do it when you are.
Finally, I wonder if your interaction with Young Dr. Fasttalk is making things worse for you. Not understanding what someone is saying while not being comfortable with how he's saying it is not a good place to be. If you have to continue involvement with someone in his specialty, can you change to someone else?
posted by ALeaflikeStructure at 6:46 AM on September 4, 2017
Best answer: Medical uncertainty is the worst! I'm sorry that your doctor didn't explain things clearly to you. Doctors order all these tests and offer up all these interpretations, but part of their job is to tell you what they're looking for and what they suspect is going on. I wonder if you have a more trusted doctor that you have a more established relationship with that you could voice your concerns to?
For what it's worth, you're right -- an isolated, chronically mildly elevated amylase doesn't jump out as a red flag for anything life-threatening; an amylase level isn't a very specific test and lots of very benign things can cause it to be elevated.
When I feel like I'm drowning in an unproductive thought, reminding myself of basic CBT-type questions can be helpful.
posted by gemutlichkeit at 7:11 AM on September 4, 2017 [4 favorites]
For what it's worth, you're right -- an isolated, chronically mildly elevated amylase doesn't jump out as a red flag for anything life-threatening; an amylase level isn't a very specific test and lots of very benign things can cause it to be elevated.
When I feel like I'm drowning in an unproductive thought, reminding myself of basic CBT-type questions can be helpful.
posted by gemutlichkeit at 7:11 AM on September 4, 2017 [4 favorites]
Best answer: It's the not knowing that's so rough. In the past few years, I've had a few periods where I needed to wait for results and the few things I can pass along are:
* the test results are going to be what they're going to be: no amount of stress and worry will change those results. You can think about them all you want or completely try to put it out of your mind and the results are going to be the same
* stop looking up what those results could mean on the internet because you'll only get more anxious
* there are really very few test results that mean you're going to die soon or need hardcore treatment, and the odds are wayyyyy much more in your favor that AT WORST, you have a thing that might possibly need some type of minor treatment but even that's pretty unlikely
* know that weird blood levels can be a generally meaningless thing and bodies do sometimes have inflammation that resolves by itself.
posted by yes I said yes I will Yes at 8:09 AM on September 4, 2017 [1 favorite]
* the test results are going to be what they're going to be: no amount of stress and worry will change those results. You can think about them all you want or completely try to put it out of your mind and the results are going to be the same
* stop looking up what those results could mean on the internet because you'll only get more anxious
* there are really very few test results that mean you're going to die soon or need hardcore treatment, and the odds are wayyyyy much more in your favor that AT WORST, you have a thing that might possibly need some type of minor treatment but even that's pretty unlikely
* know that weird blood levels can be a generally meaningless thing and bodies do sometimes have inflammation that resolves by itself.
posted by yes I said yes I will Yes at 8:09 AM on September 4, 2017 [1 favorite]
Best answer: Waiting is the worst!
Lots of good suggestions above. Another thing to keep in mind--just because a test result doesn't fall within the average normal range doesn't mean that it's not YOUR normal! For example, I have a low white blood cell count. It's consistently fallen outside the established normal levels for years. I've had many additional tests and my Dr has finally decided that there's no underlying cause--it's just what's normal for my particular body. He isn't concerned about it at all anymore.
Good luck to you!
posted by bookmammal at 8:16 AM on September 4, 2017 [2 favorites]
Lots of good suggestions above. Another thing to keep in mind--just because a test result doesn't fall within the average normal range doesn't mean that it's not YOUR normal! For example, I have a low white blood cell count. It's consistently fallen outside the established normal levels for years. I've had many additional tests and my Dr has finally decided that there's no underlying cause--it's just what's normal for my particular body. He isn't concerned about it at all anymore.
Good luck to you!
posted by bookmammal at 8:16 AM on September 4, 2017 [2 favorites]
Best answer: I'm sorry you're going through this.
A few things that help me manage anxiety:
Mindfulness. Sometimes I just touch something near me and try to be completely in the moment. Focus on physical sensations / senses and realize that you are ok right now. Meditation can help as well.
Relaxing music. Marconi Union's "Weightless" is supposed to be the most calming song in the world, but anything you find relaxing. MyNoise.com has a lot of unique soundscapes.
Deep breathing. Count to four as you breath in, count to four, count to four as you breathe out, count to four again.
Heavy blankets, hugs, any kind of comforting sensations like that. I made myself a weighted blanket.
This isn't for everyone and I know a lot of people think it's weird, but ASMR videos have helped me through some rough anxiety. Something about watching people fold towels or something equally mundane and talk softly is really calming to me. Your results may vary.
posted by seraph9 at 8:53 AM on September 4, 2017 [2 favorites]
A few things that help me manage anxiety:
Mindfulness. Sometimes I just touch something near me and try to be completely in the moment. Focus on physical sensations / senses and realize that you are ok right now. Meditation can help as well.
Relaxing music. Marconi Union's "Weightless" is supposed to be the most calming song in the world, but anything you find relaxing. MyNoise.com has a lot of unique soundscapes.
Deep breathing. Count to four as you breath in, count to four, count to four as you breathe out, count to four again.
Heavy blankets, hugs, any kind of comforting sensations like that. I made myself a weighted blanket.
This isn't for everyone and I know a lot of people think it's weird, but ASMR videos have helped me through some rough anxiety. Something about watching people fold towels or something equally mundane and talk softly is really calming to me. Your results may vary.
posted by seraph9 at 8:53 AM on September 4, 2017 [2 favorites]
Best answer: I'm very sorry you are in this position of waiting for medical results. I've been through it a few times and it's always stressful, even if there's a good chance it's nothing.
The last time this happened (doctor found a suspicious mass, and I got whiplash from the speed with which he scheduled an array of scans), I gritted my teeth through the waiting period by talking it over with friends and my partner, writing in a journal, and thinking about exactly what I would do if the worst case scenario were true. Part of what is horrible about waiting for medical results is the helplessness and lack of control--formulating a plan for the worst case scenario wasn't pleasant, but it did give me a small sense of control, over what was happening.
I also started bringing someone with me to any appointments where I might receive new information, both for the moral support and practical support of another set of ears to hear what the doctor was saying/ask questions I might be too stunned to ask. When I have the wherewithal and a doctor is talking too fast or using terms without explaining them, I interrupt them and say, "could you please repeat that more slowly" and "I don't understand what ______ means--can you please define that?" Often that brings them back to earth and makes them remember they're not talking to a fellow physician.
Good luck and I hope your tests show you are in the clear.
posted by hurdy gurdy girl at 10:09 AM on September 4, 2017
The last time this happened (doctor found a suspicious mass, and I got whiplash from the speed with which he scheduled an array of scans), I gritted my teeth through the waiting period by talking it over with friends and my partner, writing in a journal, and thinking about exactly what I would do if the worst case scenario were true. Part of what is horrible about waiting for medical results is the helplessness and lack of control--formulating a plan for the worst case scenario wasn't pleasant, but it did give me a small sense of control, over what was happening.
I also started bringing someone with me to any appointments where I might receive new information, both for the moral support and practical support of another set of ears to hear what the doctor was saying/ask questions I might be too stunned to ask. When I have the wherewithal and a doctor is talking too fast or using terms without explaining them, I interrupt them and say, "could you please repeat that more slowly" and "I don't understand what ______ means--can you please define that?" Often that brings them back to earth and makes them remember they're not talking to a fellow physician.
Good luck and I hope your tests show you are in the clear.
posted by hurdy gurdy girl at 10:09 AM on September 4, 2017
Best answer: Also, decide ahead of time what you want when you do talk to friends and family during the wait. Some people want reassurance ("It's probably nothing! Look how healthy you are! You're fine!") while others just want people to listen. Once you know which it is for you, tell the people you're confiding in. It's hard for people not to try to reassure you (look at this thread, for example), so if you don't find that comforting, communicate that to your loved ones so they don't inadvertently irritate you.
posted by hurdy gurdy girl at 10:20 AM on September 4, 2017
posted by hurdy gurdy girl at 10:20 AM on September 4, 2017
Response by poster: I want to sit down and mark some (all!) "best answers" later, but you people are so very very kind. Every answer is helpful. I appreciate it so much.
posted by huimangm at 1:56 PM on September 4, 2017 [1 favorite]
posted by huimangm at 1:56 PM on September 4, 2017 [1 favorite]
Response by poster: Best answers for everyone, because all were genuinely helpful and the fact that each person had felt moved to comment was in itself very comforting. (ALeaflikeStructure gets extra points for "Young Dr. Fasttalk," which made me grin every time I thought of it.)
Update in case anybody is still reading: I made it through to Friday and the aforementioned Dr. Fasttalk, at a more or less normal rpm, told me everything was basically fine. For the moment, phew! Thank you all again. I have celebrated by getting one chocolate and one Earl Grey creme brulee from the fancy creme brulee shop (don't even ask me why my neighborhood has a fancy creme brulee shop), which...is probably not the healthiest thing to appreciate good health with, but once in a while!
posted by huimangm at 2:54 AM on September 8, 2017 [2 favorites]
Update in case anybody is still reading: I made it through to Friday and the aforementioned Dr. Fasttalk, at a more or less normal rpm, told me everything was basically fine. For the moment, phew! Thank you all again. I have celebrated by getting one chocolate and one Earl Grey creme brulee from the fancy creme brulee shop (don't even ask me why my neighborhood has a fancy creme brulee shop), which...is probably not the healthiest thing to appreciate good health with, but once in a while!
posted by huimangm at 2:54 AM on September 8, 2017 [2 favorites]
Good for you! So glad you got good news. Waiting for medical results is so stressful--hope you get to enjoy the upcoming weekend with a clear head and heart now that you've been able to empty that particular "worry basket"!
posted by bookmammal at 11:12 AM on September 8, 2017
posted by bookmammal at 11:12 AM on September 8, 2017
This thread is closed to new comments.
posted by Aravis76 at 6:43 AM on September 4, 2017