LouT Posted August 10, 2021 Posted August 10, 2021 I went for my 6 month scan (I believe my last six-month one) last Thursday and things didn't go well and that made me a bit nervous about possible outcome. I got the usual robocall reminding me of the appointment and also instructing me not to eat or drink anything for 5 hours prior to the appointment, so that meant no breakfast or even a glass of water. So, my dehydrated self showed up for the scan and, to make a long story short, after one tech punctured and searched for a vein 5 times the next fellow then did the same thing 2 more times. One of them then called my doctor and got approval to do the scan without the contrast dye. Okay, so that left me not feeling great about this round. In addition, my appointment with the doctor wasn't for another week AFTER the scan so, prior to the scan, I called his office and they told me he'd get the results to me as soon as he read them. So, the next day (Friday) passed, then Saturday and Sunday. Monday I was waiting patiently (that's a lie) for a call and after 11am I called and left a message for the NP. A half hour later I got a call that all was stable, no new recurrence or any new growths seen, essentially NED. Big relief... After thanking her for the news I did offer a suggestion that they call their patients more quickly than 4 days after a scan like this, because of our Scanziety....she agreed. So I'm grateful for the outcome and thrilled to move forward. Lou PS: After they poked me like a voodoo doll on a foreign island the tech informed me that it is fine for me to drink water before a lung scan, this way I wouldn't be so dehydrated and have this trouble again. Geez...it would have been nice to know that before.
Tom Galli Posted August 10, 2021 Posted August 10, 2021 Lou, I think the medical and nursing school students need more practice enduring IVs. They should experience 5 draw attempts once-per-week after fasting (including no water) for an entire day. Then, to reinforce this IV lab lesson, they must wait a minimum of 15 days for each examination result administered for academic subjects. Moreover, before this result is delivered, they must call a 1-800 number and remain "on hold" enduring elevator music for 30 minutes. Then, and deliberately, the test score will have a probability of wrong student error equal to .5 and it is left to the student to figure out how to resolve this incorrect result. There is no need for IV madness in medicine. One would think, with all of our technology, the procedure could be automated to increase probability of success to 6-sigma. We need to collectively design a campaign of protesting about IV ineptitude! After all, we are paying for all this madness. I was so focused on our IV problem that I had to edit to wish you HAPPY NED! Stay the course. Tom
Rower Michelle Posted August 10, 2021 Posted August 10, 2021 Hey Lou, That is great news! Sorry about the voodoo practice, they tell me to drink extra water the day before & morning of a scan. Also for some unknown & unexplained reason the no food rule has also been lifted at KU CC. So go figure…. Very happy for you! Michelle
LexieCat Posted August 10, 2021 Posted August 10, 2021 Glad for your good results, Lou. They always tell me to drink plenty of water before scans--even when using the port. I met with my new Penn oncologist yesterday (whom I liked) and I mentioned to the infusion nurses (I had my every-three-month Zometa infusion) the Cooper policy on not using the port for anything but infusions. Neither of them could believe it and thought it was the most ridiculous thing they'd ever heard. Made me feel better than ever about sticking with Penn for any oncology treatments (hopefully it will mostly be a matter of following along).
LouT Posted August 10, 2021 Author Posted August 10, 2021 Thanks folks...I'm happy with the results and now know to ignore the robocall. I also like Tom's talk about IV's even hydrated I usually get multiple pokes before they get anything. But NED made it all fade away until the next time. Lou
Curt Posted August 10, 2021 Posted August 10, 2021 Great news Lou. Does your last six month mean you are on annual check ups now?
Judy M2 Posted August 10, 2021 Posted August 10, 2021 Congratulations Lou! What a crazy experience though. I'll be getting my PET scan results on Thursday--2 whole weeks after my scan. That's the longest I've gone so far. And results of my echocardiogram (10 days ago), which is needed on my targeted therapy. I figure if anything was bad I'd be getting a call earlier.
LouT Posted August 11, 2021 Author Posted August 11, 2021 14 hours ago, Curt said: Great news Lou. Does your last six month mean you are on annual check ups now? I think so. My oncologist had told me that once we did this scan, and if there were no changes, that we could move to annual. Frankly, I kind of like the security of a 6-month scan, but that is not the protocol for someone like me (us). Lou
LouT Posted August 11, 2021 Author Posted August 11, 2021 13 hours ago, Judy M2 said: Congratulations Lou! What a crazy experience though. I'll be getting my PET scan results on Thursday--2 whole weeks after my scan. That's the longest I've gone so far. And results of my echocardiogram (10 days ago), which is needed on my targeted therapy. I figure if anything was bad I'd be getting a call earlier. Wow Judy, TWO WEEKS....that would put me just North of crazy. I hope that you hear soon. I just don't understand how doctors can have patients wait so long for something that is usually read the next day or, in my case, the evening of the scan. Best of luck to you on the scan. Lou
Judy M2 Posted August 11, 2021 Posted August 11, 2021 Honestly, I haven't even thought about it. My previous wait was 10 days. I don't let myself worry about most things anymore. But next time I'm going to schedule my appointment at the same time I schedule the PET scan.
TJM Posted September 7, 2021 Posted September 7, 2021 On 8/10/2021 at 8:23 AM, Tom Galli said: Lou, I think the medical and nursing school students need more practice enduring IVs. They should experience 5 draw attempts once-per-week after fasting (including no water) for an entire day. Then, to reinforce this IV lab lesson, they must wait a minimum of 15 days for each examination result administered for academic subjects. Moreover, before this result is delivered, they must call a 1-800 number and remain "on hold" enduring elevator music for 30 minutes. Then, and deliberately, the test score will have a probability of wrong student error equal to .5 and it is left to the student to figure out how to resolve this incorrect result. There is no need for IV madness in medicine. One would think, with all of our technology, the procedure could be automated to increase probability of success to 6-sigma. We need to collectively design a campaign of protesting about IV ineptitude! After all, we are paying for all this madness. I was so focused on our IV problem that I had to edit to wish you HAPPY NED! Stay the course. Tom Well put Tom!
TJM Posted September 7, 2021 Posted September 7, 2021 So glad to hear this Lou! I get scanned today and now that it's just a follow up I get the pleasure of waiting 7 days as well. I'm telling myself that if it's bad news I will hear sooner and will choose to believe that no call is good! Peace Tom
LouT Posted September 8, 2021 Author Posted September 8, 2021 Tom, Waiting so long just makes me crazy. I know that it does no good, but my mind starts to wandering left and right until I actually hear that all is well. Hang in there buddy. Lou
TJM Posted September 9, 2021 Posted September 9, 2021 Lou Agree. I keep looking to see if the results are in even tho I don't expect them till next week. Hard to get use to because they were doing mine STAT and I had results same/next day. As an aside. I am suppose to get a brain MRI done every six months. It's been 7 months. Wanna bet I need to suggest it myself? I'll give my onc time to bring it up but not going to hold my breath Peace Tom
LexieCat Posted September 9, 2021 Posted September 9, 2021 Tom, why would you wait to ask about the MRI? I always ask if something doesn't seem right. E.g., originally yesterday they were going to schedule me for an "early" CT scan of the chest only in a month, but they realized the trial protocol called for a chest/pelvis scan in 5-7 weeks, so the nurse told the scheduler to make it for 5 weeks, chest/pelvis. When I got home, I realized the order they handed me on checkout was for the chest only (without contrast). I texted the nurse to let her know and she said not to worry, she'd corrected it. Mistakes happen. Why delay a test for the sake of seeing if they've slipped up?
Rower Michelle Posted September 9, 2021 Posted September 9, 2021 Totally agree. We all need to try to remove the phrase “waiting for” as it pertains to our follow up care. Getting anything scheduled takes longer under the umbrella of “due to Covid”. So act today….
LouT Posted September 9, 2021 Author Posted September 9, 2021 Tom, The ladies are spot on. You need to advocate for yourself. The medical team does work for you and you have the right (responsibility) to tell them if things aren't going according to plan. Please do that. Lou
catlady91 Posted September 9, 2021 Posted September 9, 2021 Amazing! I'm really happy for you. You seem like a very understanding and warm person. You've been so kind to me on here. Now crack open that bottle of champagne 🍾🍾
TJM Posted September 10, 2021 Posted September 10, 2021 All I just realized it a week ago. Trust me I will bring it up next week. I decided a couple weeks wasn't that big of deal. I posted that precisely for the reaction y'all gave me. Advocate. Surprising how many people would let it slide. Love you all Peace Tom
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