I am SOOOOOOO Pissed!

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PainInTheAss
Posts: 661
Joined: Tue Jul 02, 2013 3:08 am

I am SOOOOOOO Pissed!

Postby PainInTheAss » Wed May 17, 2017 7:53 pm

Summary: My onc's assistant never scheduled my early scans after I complained about suspicious pain to my Onc in February...never mind my regular scans that I should have had in April, I asked for early scans. I just found out that my next scans are set up for October!!!!

I am so pissed at this b****!

First off, I had my last scans at the end of October last year and they were all clear. Then at the end of December, I started have a weird pressure/discomfort in the liver/gall bladder area. After searching the forum and discovering the liver doesn't have nerve endings and most liver pain is felt in the advanced stages, I figured it was unlikely to be mets. It would come and go and never really felt like pain. I thought maybe it was my gall bladder.

After having this continue off and on in January, I decided to see my Onc early, so set up an appt for February. The office was extremely busy that day. When they are busy, my Onc and his assistant will tag team, with her coming in first and going over labs, etc. I didn't say anything to her... because she isn't my doctor!! Sorry, but I don't want to talk to the assistant, about anything!

He came in and seemed tired, rushed and in a hurry. It was very unusual. It was like cancer had gone on sale and their center had an unexpected rush. I mentioned my pain and after poking around, he said that we will do a PET and a bone scan, but it's unlikely it's liver mets or I would be losing weight and be really sick. If the PET is denied, we will do a CT and MRI. This PET denial process with an appeal can take a month, so I was probably not going to get scanned until April anyway. Oh well.

He leaves, and the assistant tells me that they will call me with the results, and I don't need to come back in for another appointment. WTF? It was like she was trying to free up his time or something. I didn't say anything, but thought I would just make an appointment anyway. F*** her.

So, I waited a month and was told my CT was pending. I thought that meant the PET and bone scan had been denied. I waited another week or two, still pending. Hmmm. Every time I call, still pending.

So now it's May. I explain my problem to someone, and they put me through to the head of test scheduling. She informs me that there was no PET or bone scan ever requested and that this CT was actually scheduled for October. So that b**** forgot to submit the request!!! Oh my god, really? Really, really, really? I know they were crazy busy that day, but really? Wow, wow, wow.

I get so upset and start crying. She apologizes and said they implemented a new appointment system and there were some "kinks." Yeah, I'll say.

All I could think is, "If I die because of that b****..."

I decide that I will be no more Mrs. Nice Guy. I will refuse to talk to the assistant without my Onc present, and I will make future appointments the last appointment of the day. Like the one I'm going to make after my scans. F*** that b****!!

There, I feel better after venting. I went back and read this and I'm like lolololol. Me so drama.

Thank you for listening. There's not many I could talk to about this who would understand.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

Utwo
Posts: 140
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: I am SOOOOOOO Pissed!

Postby Utwo » Wed May 17, 2017 7:57 pm

Are you from Canada?
58 yo male at diagnosis - T1bN0, 0/15 lymph nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy #1: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy #2: caecum sessile 3.5 cm polyp piecemeal removed
05/2016 CT scan, blood test ...
05/2016 laparoscopic right hemicolectomy with a few complications (bleeding, leak, infection)
06/2017 CT scan, colonoscopy OK; CEA = 1.6

jhocno197
Posts: 809
Joined: Mon May 11, 2015 9:33 pm

Re: I am SOOOOOOO Pissed!

Postby jhocno197 » Wed May 17, 2017 8:04 pm

Oh my goodness, I would be so freaking pissed, too!!!!
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

PainInTheAss
Posts: 661
Joined: Tue Jul 02, 2013 3:08 am

Re: I am SOOOOOOO Pissed!

Postby PainInTheAss » Wed May 17, 2017 8:09 pm

Utwo wrote:Are you from Canada?


I know, right! No, US. Arizona.

I've never had anything like this happen before in 4 years.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

DebZ
Posts: 73
Joined: Fri Nov 14, 2014 9:01 pm
Facebook Username: Bulc

Re: I am SOOOOOOO Pissed!

Postby DebZ » Wed May 17, 2017 10:45 pm

I feel your pain! Went for chemo today. Lots of premeds make me loopy. Toward end of visit nurse is telling me I should be ready to leave in a little, but the timing didn't feel right. When I questioned her about Avastin, sure enough, she forgot to give me it to me. FORGOT!! It had been ordered thank God, but really?! The Benadryl makes me completely stoned so sometimes I'm asleep or not paying attention. Never having that nurse again! Hope you get your scans quickly. We have enough going on ... don't need additional crap.
48 @ diagnosis Sept 2014
MSS; Kras mutant G12D
Oct 2014: right hemicolectomy
Dec 2014: Folfox 12 treatments (lots of reductions in oxaliplatin and ceased before end)
June 2015: clean scans
Sept 2015: scans reveal ovarian mass and liver met; Folfiri
Jan 2016: liver wedge resection and complete hysterectomy
April 2016: multiple lung mets; Folfiri+Avastin
June 2017: lung mets growing; switching to Folfox+Avastin

[Ana & Alex]
Posts: 81
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: I am SOOOOOOO Pissed!

Postby [Ana & Alex] » Wed May 17, 2017 11:03 pm

As a fellow colleagues I won't talk bad about any specific situation with doctors or nurses. But I will say this.

Please PLEASE! Know your shit!
I know it is not easy, when you are not from the medical field to understand what it is right or best for you. But do research and advocate for yourself. You can be nice but you can request the best care, the best appointment, the best scan available.

And stay ATTENTIVE.
People make mistakes. People are tired. People are demotivated. Are there are also people for whom your are only a number to whom they perform a service.

I'm a perfectionist and there are mistakes that I will allow to happen, but if you think anything jeopardises your life - you step in like a leopard! And let them know what you are expecting and that you know what it is standard of care.

Eyes open!

Love,
Ana
Dx @ 29 yo. Mum (22. Mo) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d

[Ana & Alex]
Posts: 81
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: I am SOOOOOOO Pissed!

Postby [Ana & Alex] » Wed May 17, 2017 11:21 pm

Just wanted to add: if you have to wait a long time to check your liver you can try and get an ultrasound from a specialist.

Much cheaper and the good ones will tell you on the fly if you have to worry and pursue swiftness or not.
Dx @ 29 yo. Mum (22. Mo) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d

turtle
Posts: 24
Joined: Wed Apr 15, 2015 5:02 pm
Location: Encinitas, CA
Contact:

Re: I am SOOOOOOO Pissed!

Postby turtle » Thu May 18, 2017 1:43 am

Glad you followed up!
Feb. 2015 at age 39: Dx stage IIIb cecal cancer extending into appendix
March 2015 at age 40: Began FOLFOX, discontinuing early after 10 cycles due to suicidal ideation and difficulty moving
Oct. 2016 at age 41: Dx stage IV with 3 metastases to lungs (one 3.7 cm x 2.2 cm) and 1 to liver
KRAS-mutation positive

User avatar
Hannah Faulkner
Posts: 29
Joined: Tue Feb 14, 2017 3:14 am

Re: I am SOOOOOOO Pissed!

Postby Hannah Faulkner » Thu May 18, 2017 2:41 am

I can relate to your pain with chemo, one thing is they only tell us what make sense. so its better to do research to ask right question at the moment. Hope your scan shows positive signs

Lee
Posts: 5258
Joined: Sun Apr 16, 2006 4:09 pm

Re: I am SOOOOOOO Pissed!

Postby Lee » Thu May 18, 2017 5:20 pm

I am so sorry this happened to you, it is inexcusable :evil: .

I have not read all the post, BUTT I truly believe this incident should be reported. This type of incident could effect a life/death type situation.

Good luck, you have every right to be pissed!

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Utwo
Posts: 140
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: I am SOOOOOOO Pissed!

Postby Utwo » Fri May 19, 2017 3:12 pm

DebZ wrote:When I questioned her about Avastin, sure enough, she forgot to give me it to me.
Are you from Canada?
58 yo male at diagnosis - T1bN0, 0/15 lymph nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy #1: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy #2: caecum sessile 3.5 cm polyp piecemeal removed
05/2016 CT scan, blood test ...
05/2016 laparoscopic right hemicolectomy with a few complications (bleeding, leak, infection)
06/2017 CT scan, colonoscopy OK; CEA = 1.6


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