Back in the ER

Inspired2013
Inspired2013 Member Posts: 45
in Colorectal Cancer #1

wrll, my troublesome back pain that was a symptom of my last liver abscess is back. Since it’s gotten worse over the last two weeks and now it hurts to take a deep breath and I’m not getting as deep a breath, my oncologist suggested heading to the ER to get checked out. So I’m now comfortable in the ER after a dose of dilaudid and waiting for a CT scan. I’m hoping that I’ve worried for nothing, but I’d say it’s about 50/50 whether I get admitted. Hopefully if it is another liver abscess, they’ll do some investigating and figure out why it keeps coming back. Hopefully there aren’t any other surprises on the CT scan. I had hoped for no ER visits this year, but apparently that was too much to ask for. Wish me luck that it’s not anything worse than an annoying liver abscess. 

«1

Comments

  • Butt
    Butt Member Posts: 352 Member
    #2

    Those ER waiting areas.... Honey, we are with you.

  • Inspired2013
    Inspired2013 Member Posts: 45
    #3
    Butt said:

    Those ER waiting areas.... Honey, we are with you.

    Thankfully it was relatively

    Thankfully it was relatively quiet, so we only spent about 15 minutes in the actual waiting room. I now have an IV through my port and they’ve taken blood and given me some dilaudid. Now we’re waiting on a CT scan. The concern is that I have another live abscess that needs draining. If it does, then I’ll end up getting admitted. Hopefully this time we can figure out why it keeps happening. We’re also going to demand they test it for cancer cells. Apparently when you have multpile things like this, they test the fluid the first time and if it doesn’t have cancer cells, they don’t test it again. But this time we want the fluid tested for more than just infection. 

  • Diane_K
    Diane_K Member Posts: 84 Member
    edited March 2019 #4
    Good for you to demand they

    Good for you to demand they test the cells for cancer.  I hope you get answers today and the answers are good.  Sending best wishes.  Let us know the results.

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    #5
    Here' hoping

    Here's hoping for the best possible results.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #6
    Oh boy, I hope this easily

    Oh boy, I hope this easily dealt with. Good luck!

    Jan

  • Inspired2013
    Inspired2013 Member Posts: 45
    #7
    Sending me home

    They are sending me home. There is some fluid where it has collected before but apparently not worth draining. The fluid amount is less than on my last CT scan, never mind that my last CT scan was BEFORE they drained it the last time. After talking with the surgeon on call, the PA said i might just have to deal with it the rest of my life. That’s really not acceptable. I didn’t have this problem before my liver resection surgery. So now I go home and deal with first intermittent pain and then constant pain until it gets worse and I’m forced to go back to the ER again. So much for going in early in this process to deal with it early. I’m really pissed off about it. They still don’t know why I’m collecting fluid and no one seems to be in any hurry to find out why. To this point I’ve had great doctors and I love my surgeon and my oncologist but this time I’m so not impressed. I’m going to be even less impressed if my oncologist looks at my scans on Tuesday and sends me to the hospital to have the fluid drained. 

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    #8
    Inspired2013 said:

    Sending me home

    They are sending me home. There is some fluid where it has collected before but apparently not worth draining. The fluid amount is less than on my last CT scan, never mind that my last CT scan was BEFORE they drained it the last time. After talking with the surgeon on call, the PA said i might just have to deal with it the rest of my life. That’s really not acceptable. I didn’t have this problem before my liver resection surgery. So now I go home and deal with first intermittent pain and then constant pain until it gets worse and I’m forced to go back to the ER again. So much for going in early in this process to deal with it early. I’m really pissed off about it. They still don’t know why I’m collecting fluid and no one seems to be in any hurry to find out why. To this point I’ve had great doctors and I love my surgeon and my oncologist but this time I’m so not impressed. I’m going to be even less impressed if my oncologist looks at my scans on Tuesday and sends me to the hospital to have the fluid drained. 

    Unknowns

    There are seemingly a lot of unknowns in cancer treatment.  Sometimes you get to the end of your doctor's education pretty quickly.  Sometimes going to pubmed and doing your own research is a way to get a jump on what the doctor knows. . . at least it will help you to ask intelligent questions.

  • Inspired2013
    Inspired2013 Member Posts: 45
    #9
    SandiaBuddy said:

    Unknowns

    There are seemingly a lot of unknowns in cancer treatment.  Sometimes you get to the end of your doctor's education pretty quickly.  Sometimes going to pubmed and doing your own research is a way to get a jump on what the doctor knows. . . at least it will help you to ask intelligent questions.

    At this point I’m really

    At this point I’m really upset by the fact they won’t do anything until it gets worse. The idea that I have to let it get worse is ludicrous. And by the fact that comparing today’s CT vs my last CT tells you nothing about whether the fluid pocket has been growing. If my oncologist sends me to the hospital to have it drained on Tuesday I am going to be supremely pissed. 

  • Butt
    Butt Member Posts: 352 Member
    #10

    Typing from my mobile....Please see the surgeon who did a liver resection. Those surgeons on call may be not that good. I had a buddy of mine who had a colon surgery but it wasn t cancer. So a week later he was shopping for groceries with his wife. He sneezed, the incision opened and the colon felt out. Got to ER. The surgeon on call wasn t sure what to do in terms of details. Turned out the whole surgery was done wrong.  You have the right to request the specific doctor if things can wait a bit even he is not on call. You have the right to ask to be moved to the hospital where your liver guy is if it is not fat away. No, docs are not rushed in many cases. I ended up in ER during my visit to MD Anderson. I checked in and told them right away what tests I want. They promotly agreed but wanted to add a urine test. Tests were done promptly. They specialize  in cancer patients because it is a cancer center. But that urine test.....There a simple machine that gives you printed results in less than 2 min. took 6 hours at least. Because it wasn t ready in 6 hours and I decided to get back to a hotel without that urine test. They wanted to check me for UTI that I knew I didn t  have. Billed my insurance for 19K and there were no any scans. Just chest x Ray, blood work, hydration for 2 hours and IV antibiotic for 2 hours and the said urine test..... Butt.

  • Butt
    Butt Member Posts: 352 Member
    #11

    Let your oncologist call you liver guy or girl or vise versa. Let them talk and figure out the plan. Docs talk with each other. Years ago I  had a colleague who was a doc. He dated a lady and they had some relationship issues. Every Monday after the saw each other on a weekend around 9 am that was a busy time he called his friend who was another doc. He immediately would get connected. So, they were talking about what that GF did it said over the weekend. They were not brief conversations either.........

  • Inspired2013
    Inspired2013 Member Posts: 45
    #12
    Butt said:

    Let your oncologist call you liver guy or girl or vise versa. Let them talk and figure out the plan. Docs talk with each other. Years ago I  had a colleague who was a doc. He dated a lady and they had some relationship issues. Every Monday after the saw each other on a weekend around 9 am that was a busy time he called his friend who was another doc. He immediately would get connected. So, they were talking about what that GF did it said over the weekend. They were not brief conversations either.........

    I see my oncologist Tuesday

    I see my oncologist Tuesday afternoon with more details scans and obvsiously as someone who knows my history better. He was even the oncologist on call at the hospital the last time this happened. I will definitely talk with him about it at my appointment. I trust his opinion and I know he’s willing to talk to surgery. The pain isn’t yet constant though when it’s present it’s dilaudid level strong - again, the beginning is the same as last time. The hospital sent me home with enough dilaudid to augment what I have and make sure I have enough to get to my appointment on Tuesday. 

    My dad went with me to the hospital today and usually he’s a terrific advocate for me, but he was just accepting. He wanted to know what I expected them to do. Call me crazy, but I want them to take care of my pain. I want them to do more than just guess as to why it keeps coming back. I want some investigation done before you just tell me I might have to deal with the pain and fluid the rest of my life. Each time they’ve drained it, I’ve ended up in the hospital for several days with a painful liver tube. im just supposed to accept that from the ER and not a specialist? 

    Am I crazy for being pissed off and supremely frustrated?

  • Butt
    Butt Member Posts: 352 Member
    #13

    It is something the liver surgeon has to look at because it is not the exact area of oncologyst. Yes, they absolutely has to take care of your pain. You are not crazy. Check if ketoprofen works for you. It is not a narcotic but you need a prescription. It is stronger that iniprofen. It is very popular in Europe. 

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #14
    Wow

    So sorry you are dealing with this and you shouldn't put up with this with just waiting for fluid to collect and have it drained.  Express to your doctor on Tuesday that you are concerned about this and since you think highly of him make sure he understands that this is not acceptable.  Wishing you the best on Tuesday.  Please keep us updated.

    Kim

  • Inspired2013
    Inspired2013 Member Posts: 45
    #15
    Answers this week

    I should get some answers this week. Tomorrow is my first set of complete CT scans since the end of chemo. They’re doing contrast CT scans of my pelvis, abdomen, and lungs. By comparison, the ER only did an IV contrast of my abdomen. On Tuesday I meet with my oncologist for a new set of blood work and a “what comes next” meeting. All of this was set up before my ER visit. So now I’m addition to our “what comes next” discussion, we’ll also be talking about my recent ER visit. Thankfully, it’s scheduled as a 40 minute appointment, so we’ll have time to go through it all. 

  • Inspired2013
    Inspired2013 Member Posts: 45
    #16
    Step one of this week is done

    Step one of this week is done and the results are up in my patient portal. Thankfully there are no surprises on either of the CT scans. So now it’s off tomorrow for blood work and my oncologist appointment. But it’s really nice to know there are no surprises, especially since I started this journey already at stage 4.

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    #17
    Inspired2013 said:

    Step one of this week is done

    Step one of this week is done and the results are up in my patient portal. Thankfully there are no surprises on either of the CT scans. So now it’s off tomorrow for blood work and my oncologist appointment. But it’s really nice to know there are no surprises, especially since I started this journey already at stage 4.

    Congratulations

    Congratulations.  Here's hoping for more good results.

  • Inspired2013
    Inspired2013 Member Posts: 45
    #18
    Today is why I love my

    Today is why I love my oncologist. I didn’t even have the opportunity to ask him to call my surgeon to consult when my oncologist said that’s what he was going to do. My oncologist is also concerned about the return of fluid. He’s going to call my surgeon and push for it to be cleaned out surgically now that chemo is done, as opposed to simply draining it again. My oncologist agrees that it’s not something we can simply leave long term, or something I have to get used to. My oncologist is also going to suggest taking out my gallbladder (I have several large gallstones). We’ve got an appointment now to meet with the surgeon in two weeks, but my oncologist thought we’d hear back at some point this week. So now there is a plan in place going forward and a doctor that took the time to BE a doctor and listen to the patient. 

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #19
    Sounds like you're headed in

    Sounds like you're headed in the right direction. I hope everything goes well for you. It's always something, isn't it? My chemo is over and my CEA looks good but the chemo made me so that my magnesium is so low I have to get an IV of it every couple of days. I'm a very hard start and I'm bruised up and sore already. 

    I'm also stage four but was diagnosed at stage three. It's in both lungs, my liver and back in the colon. Ugh.

    Jan

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #20
    Good news

    I know it means more surgery, but if its going to stop the problems, then all will be well afterwards.  I also hope they remove your gllbladder at the same time. With large stones, I bet that would be in your future.  

    When I had my liver surgery, they also removed my appendix, which was looking really odd, on the last scan.  Pathology came back fine, but the surgeon said that it was not normal. So, I was glad to get it out with the liver surgery, and not have to have another in the future. 

    Good luck!

    Tru

  • Inspired2013
    Inspired2013 Member Posts: 45
    #21
    Trubrit said:

    Good news

    I know it means more surgery, but if its going to stop the problems, then all will be well afterwards.  I also hope they remove your gllbladder at the same time. With large stones, I bet that would be in your future.  

    When I had my liver surgery, they also removed my appendix, which was looking really odd, on the last scan.  Pathology came back fine, but the surgeon said that it was not normal. So, I was glad to get it out with the liver surgery, and not have to have another in the future. 

    Good luck!

    Tru

    I’m really okay with surgery

    I’m really okay with surgery if it means this cycle stops. It will probably postpone the other surgeries that were to happen later this year (total colectomy and hysterectomy), but again, if it takes care of the never ending liver abscess, then I’m all for this. My liver enzymes are also pretty high and my doctor thinks cleaning this up will help them return to normal. This abscess is the only blight right now. My CEA last week was 1.7 (today’s blood work still isn’t posted) and there’s no cancer from chest to pelvis :) It’s been a rough nine months to be sure. My doctor said I’m mostly likely to have a recurrence in the next 15 months if I’m going to have one. Hopefully I’ll be in the 15% that beats the odds!

Discussion Boards