CSN Login
Members Online: 3

You are here

Back in the ER

Inspired2013's picture
Inspired2013
Posts: 31
Joined: Sep 2018

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. 

Butt's picture
Butt
Posts: 143
Joined: May 2018

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

Inspired2013's picture
Inspired2013
Posts: 31
Joined: Sep 2018

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's picture
Diane_K
Posts: 44
Joined: Jan 2019

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's picture
SandiaBuddy
Posts: 607
Joined: Apr 2017

Here's hoping for the best possible results.

JanJan63's picture
JanJan63
Posts: 2196
Joined: Sep 2014

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

Jan

Inspired2013's picture
Inspired2013
Posts: 31
Joined: Sep 2018

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's picture
SandiaBuddy
Posts: 607
Joined: Apr 2017

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's picture
Inspired2013
Posts: 31
Joined: Sep 2018

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's picture
Butt
Posts: 143
Joined: May 2018

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's picture
Butt
Posts: 143
Joined: May 2018

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's picture
Inspired2013
Posts: 31
Joined: Sep 2018

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's picture
Butt
Posts: 143
Joined: May 2018

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's picture
Annabelle41415
Posts: 5808
Joined: Feb 2009

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's picture
Inspired2013
Posts: 31
Joined: Sep 2018

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's picture
Inspired2013
Posts: 31
Joined: Sep 2018

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's picture
SandiaBuddy
Posts: 607
Joined: Apr 2017

Congratulations.  Here's hoping for more good results.

Inspired2013's picture
Inspired2013
Posts: 31
Joined: Sep 2018

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's picture
JanJan63
Posts: 2196
Joined: Sep 2014

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

tanstaafl's picture
tanstaafl
Posts: 1282
Joined: Oct 2010

With an extra 50,000 - 65,000 mg of vitamin C added to the magnesium IV, we'd call that normal at our house.

https://csn.cancer.org/node/313756

Trubrit's picture
Trubrit
Posts: 4541
Joined: Jan 2013

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's picture
Inspired2013
Posts: 31
Joined: Sep 2018

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!

Annabelle41415's picture
Annabelle41415
Posts: 5808
Joined: Feb 2009

Surgery.  If the surgery can help you get better than go for it. Great that there is no evidence of disease.  Yup it is rough but you have made it this far and seems like you have a plan going forward.  Wishing you well.

Kim

Canadian Sandy's picture
Canadian Sandy
Posts: 417
Joined: Jul 2016

Good luck Inspired. Wishing you the best.

Inspired2013's picture
Inspired2013
Posts: 31
Joined: Sep 2018

I got a survey from my hospital asking about my recent ER visit. I made sure to tell them where I felt the care was substandard. At the bottom of each page of questions, they had a place to give actual comments. I’ve decided that I’m not a fan of PAs in the ER and I really think patients should get to meet any doctor making a decision on your case, in my case, the surgeon on call. As patients, we deserve to be able to ask questions of the decision maker. Instead, i saw the ER doctor once for pleasantries for about five minutes. Otherwise it was great nurses and a terrible PA. We weren’t above to talk to the surgeon on call who actually made the decision to send me home. Incidentally, my oncologist’s opinion yesterday was the exact opposite of the ER’s opinion. At the very least, my doctor has said again and again that fluid collections like mine are an easy place for infection to brew, so the idea of leaving it in place and “getting used to having it” is nuts. In the future, I’m going to demand to talk with any doctor making any kind of decision on my case. PA’s just aren’t going to cut it next time. 

Inspired2013's picture
Inspired2013
Posts: 31
Joined: Sep 2018

My oncologist did indeed talk to my surgeon. My surgeon now wants me to have a HIDA scan to check my gallbladder. I had one the last time they were investigating this stupid spot. So the HIDA scan is next Wednesday and the appointment with my surgeon is Thursday of the following week. Thankfully my oncologist gave me some more dilaudid in case the pain gets worse while waiting to figure out the next step. Even though finding the right answer is going to take longer than I would like, I’m okay with it because my doctors are doing their due diligence and listening to me at the same time. 

Annabelle41415's picture
Annabelle41415
Posts: 5808
Joined: Feb 2009

Glad that they are following up on more tests to find out what is going on.  I'm so sorry about the PA in the ER.  I'm not a fan of them either and don't want them giving me serious medical information.  Hopefully your pain can be managed more with the new meds.  Hope they can get to the answer in what is going on with the pain.

Kim

Inspired2013's picture
Inspired2013
Posts: 31
Joined: Sep 2018

After my last hospital trip, we switched from oxycodone to dilaudid. It helped having my own oncologist doing rounds when I was admitted the last time. Thankfully the dilaudid it working a lot better than the oxy was. I get 4mg of oral dilaudid every 3 hours. It’s not bad enough yet that I have to take it around the clock. It’s also not yet bad enough that it’s a difficult pain cycle to break. 

This was the first time I dealt with a PA in the ER. I’ve had PA’s check on me while in the hospital, but I almost always see the doctor at some point too. After this though, I’m not okay with the PA being my primary medical contact. I got a survey yesterday at the hospital to rate my most recent experience - the ER visit. I was very blunt in how disappointed and pissed off I was about my experience. 

JanJan63's picture
JanJan63
Posts: 2196
Joined: Sep 2014

I'm sorry, what's a PA? I'm not sure I've heard that before.

Jan

Inspired2013's picture
Inspired2013
Posts: 31
Joined: Sep 2018

Physician’s Assistant. They help the doctors but they do not have an MD or a DO.  They can write some prescriptions. But the important point is that they are not doctors. Sometimes when I’ve gone to my primary care, I’ve seen her PA and not the doctor. When I was going through chemo, I saw my oncologist’s PA a couple of times. I was okay with that, as it was a routine exam. But an ER setting is anything but routine, so I’m not comfortable seeing a PA in that setting. From now on, when I’m in the ER, I’m going to request (demand if necessary) to see the doctor making the decisions.

Trubrit's picture
Trubrit
Posts: 4541
Joined: Jan 2013

You poor thing. It just does not seem that you can get a break. 

I am glad that your feel your Doctor's are listening. That is oh, so improtant. 

Tru

Butt's picture
Butt
Posts: 143
Joined: May 2018

Glad your oncologyst and surgeon talked! If the need to take a gallbladder, it is not a big deal and you can live without it. 

Subscribe to Comments for "Back in the ER"