SO FRUSTRATED! - I hate these 'mega' medical groups

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weisssoccermom
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SO FRUSTRATED! - I hate these 'mega' medical groups

Postby weisssoccermom » Thu Apr 12, 2018 1:16 pm

I am soooo frustrated. I have this feeling (I know, I'm becoming complacent) that I am due for my next full colonoscopy....and I think it's right around the corner. So today I called the new group that my colorectal surgeon went to after my surgery 11 years ago. When I had my surgery, she was still a part of a group but a very small, local group. Now she's a part of this 'mega' clinic that houses everything from family medicine to cancer surgery, obstetrics...you name it! I HATE IT! Gone is the personal service that I used to feel I got from my doc/smaller clinic. So I call today and first of all can't get past the person who answers the phone in the colon and rectal surgery center. Ok, he says I'm due in 2023....NO WAY! My surgeon told me I will NEVER go more than 5 years (Ok, maybe when I'm in my 80's but certainly not now) and I sure didn't have one this year! The only thing this guy could see was my last procedure....which I know was a quick mini flex sig...lasted all of 5 minutes. If memory serves me correctly, I had that done 2.5 years after my last full blown colonoscopy....which would put my next scope this summer! Yet, their records show 2023!!! Now I have to wait for someone from the medical side to give me a call back because they can see my chart. Doesn't my chart indicate that I had cancer??? I have given myself reminders to get back to these people and get this all taken care of. I'm NOT waiting TEN years for my next scope....NO WAY!!! I shouldn't have to deal with this but I guess we do. Just ranting....so frustrated with these mega groups that (at least around here) are buying out/consolidating with all the smaller offices/groups that used to be so nicely run. Now, I'm just a number and they can't even get things right! ARGH!!!!
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
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Robino1
Posts: 463
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Location: Florida

Re: SO FRUSTRATED! - I hate these 'mega' medical groups

Postby Robino1 » Thu Apr 12, 2018 1:36 pm

Ugh! Such bullshit. I hate when stuff like that happens!

Keep on it. We are our best advocates. ;)
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

weisssoccermom
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Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: SO FRUSTRATED! - I hate these 'mega' medical groups

Postby weisssoccermom » Thu Apr 12, 2018 1:49 pm

I just got off the phone with my family doctor. Thank goodness I made sure everything during my treatments and beyond was ALWAYS copied to her. Seems as though my last scope was 2/12/2013 so technically, I am overdue! Right on the form, it clearly states that I am due again in FIVE YEARS....that's what my GP's office read to me! So how come the same office that wrote that report is putting me on the 10 year plan??? It would have been nice to have them give me some advance notice....I was on spring break this week and could have easily scheduled my scope. I'm booked up through the first week of July, then I have my son's wedding in Philly the first week of August. Basically I'm going to have to wait until mid-August to schedule this...so freaking pi**es me off! This is my life....WHAT THE HECK IS WRONG WITH THIS CLINIC? Can't they even read the doctor's notes and put it in the computer correctly? This isn't the only example of poor planning/poor customer service....call it what you want....that I have encountered in the last few years with all aspects of medical offices! People at the eye clinic are stupid and incompetent. Some of the workers at the ortho are idiots as well. Hire people who are competent and can do the job correctly.....patient's lives/welfare depend on it! The docs themselves are great....it's just getting to somebody that really knows anything that is the real difficult part!
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

teachpdx
Posts: 612
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: SO FRUSTRATED! - I hate these 'mega' medical groups

Postby teachpdx » Thu Apr 12, 2018 11:34 pm

I've come to the conclusion it's up to us to take care of ourselves. If we don't advocate for ourselves we are at their mercy and many times not a good outcome. It sucks, but basically "buyer beware".
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

retiredteacher
Posts: 95
Joined: Sat Oct 21, 2017 1:34 pm

Re: SO FRUSTRATED! - I hate these 'mega' medical groups

Postby retiredteacher » Fri Apr 13, 2018 1:13 am

Had the same issue with Dignity Health here. First, I am wondering if it may be a HIPPA issue when you have divulge, repeatedly, intricacies of your med condition to someone who just basically schedules and has no medical understanding. The physician I was able to ultimately speak with suggested I try to direct contact, leave a message with, a MA to try to end run the up front phone hassles. Shouldn't have to do this .... glad you found a work around ....
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

Caat55
Posts: 526
Joined: Sat Dec 23, 2017 6:01 pm

Re: SO FRUSTRATED! - I hate these 'mega' medical groups

Postby Caat55 » Fri Apr 13, 2018 1:20 am

teachpdx wrote:I've come to the conclusion it's up to us to take care of ourselves. If we don't advocate for ourselves we are at their mercy and many times not a good outcome. It sucks, but basically "buyer beware".

DITTO Big time. We are the only ones truly looking out for us!

Keep up the fight!
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

weisssoccermom
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Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: SO FRUSTRATED! - I hate these 'mega' medical groups

Postby weisssoccermom » Fri Apr 13, 2018 11:20 am

Some medical assistant called me late yesterday afternoon. In the meantime, I had called my GP's office and found that on 2/12/13, I had my last full scope and the report clearly stated....'REPEAT IN FIVE YEARS". That meant that I am due now. So, when the MA called, I flat out asked her WHY did the first person tell me 2023. Her response...'well, sometimes mistakes are made'. Seriously??? I'm not the average patient on the 'ten year plan'.....I had cancer for crying out loud and I don't want to get it again!!!! Does this MA, who only does scheduling (her words) for the surgeon's in the practice, not comprehend the difference between the 'plan' that a cancer patient is on as opposed to the average patient??? I had to really press her about this to which she replied that in December 2015, I had a mini flex sig (which I had told her about) and that the doc had indicated three years from then....basically then December of this year. However, she did admit that my chart still would have had 2023 as the date I needed another scope.

I really like my surgeon and don't want anyone else to do my scope. The MA at the GP's office couldn't understand that concept. She kept trying to tell me to call the GI office and talk to the GI who did the scope and have him/her tell the surgeon something, blah blah blah. Honestly, I wish we just had the 'good ole days' back when we didn't have so many of these incompetent people in the medical offices trying to figure out what to say/do. It seems as though if you, as the patient, don't follow the traditional pattern, these MA's just don't know what to do or say. In my case, I don't go to a GI for my scopes and that totally threw this MA at my GP's office. She also didn't understand why I was going to some surgeon in Seattle instead of one closer by. Honestly, she kept harping on those two details. The MA at the Polyclinic in Seattle couldn't understand why I was calling.....kept telling me that THEY would notify me a few months before my next scheduled exam. Well, HELLO.....they have my next exam for FIVE years from now! Geez!

If these big mega clinics/organizations are going to buy out the smaller doc's offices, etc. then these big clinics/organizations should at least hire people who know what the heck they are talking about OR at least have some common sense and recognize that not everyone is the same/fits some standard pattern!!
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

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CRguy
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Re: SO FRUSTRATED! - I hate these 'mega' medical groups

Postby CRguy » Fri Apr 13, 2018 12:19 pm

My own scheduling mixups were just the opposite of yours Jaynee.
Even after I was out of the yearly plan, the Oncs kept sending referrals for my follow up scope yearly when the Surgeon who did them, said 3 years or 5 years depending upon polyps and timing from resection / chemo.
I kept telling each new Onc resident the story and they kept sending the requests ... SO I finally just talked to the head Onc and Surgeon to confirm the date, got his confirmation back and TOLD the Oncs when I was going. If they continued to send the bookings I told them they would have to pay any cancellation / non-notification fees because they now had the information FROM the Surgeon and ME ... the patient.

end of discussion = WORD !
That has seemed to work so far !
Cheers
CRguy

(( ASIDE : Vertical integration and consolidation of practices is also a huge issue in the Vet world. Can't really say I am in favour ....
BUTT in the US the human medical practice is more like a Vet practice in Canada = privately owned by the docs as a "business"....
and where there is business and profit, large groups consolidate and amalgamate the business end, at the expense of frustrating the client end of things. JMO ))
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Ron50
Posts: 665
Joined: Fri Feb 10, 2006 7:04 pm

Re: SO FRUSTRATED! - I hate these 'mega' medical groups

Postby Ron50 » Fri Apr 13, 2018 7:25 pm

Hi Soccermom,
Seems to be a world wide problem . I was scheduled for a three yearly scope for my last one. I was out to three years and six months before I had it. . The GI was rather short with me . He could not understand why I was so concerned given that I had survived nearly twenty years without a recurrence. He thought the procedure was totally unnecessary. I just said make sure you check carefully. He came to see me after the scope. His attitude was totally different. He had found four polyps between 4 and 12 mm. He then told me I would never go beyond two years again between scopes. I would have been furious if one of those polyps was cancerous, they all had mild displaysia, Cheers Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

weisssoccermom
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Location: Pacific NW

Re: SO FRUSTRATED! - I hate these 'mega' medical groups

Postby weisssoccermom » Fri Apr 13, 2018 10:38 pm

Hi Ron,
Sorry to hear that you had to go through that....but glad that you were persistent and got your scope when you did. I would have been so angry if one of those little buggers had been cancerous.
According to the MA, I don't need my scope until December but because of scheduling, I want to do it in August and she's all in a tizzy about having it a few months early. Heck, I'd rather have it early than late! In addition, because of my allergies, I have ALWAYS had my scopes with Propofol....now she thinks I should try it with something else...another narcotic...and I'm allergic to almost all of them and I'm putting my foot down and saying NO NO NO! Getting an anesthesiologist to administer the propofol requires extra effort to coordinate the schedules, etc. which is another reason I want it in August...away from the holidays and when school isn't in session so that I have a lot of time in MY schedule to find a date. I can already see, though, that this is a new wrinkle in this mess....she's going to schedule me without the anesthesiologist...I just know it! I will be so PO'd if I go through the prep and then can't have the scope! How I HATE these incompetent people who only know how to approach things in ONE way!
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

heiders33
Posts: 283
Joined: Sat Nov 04, 2017 11:08 am

Re: SO FRUSTRATED! - I hate these 'mega' medical groups

Postby heiders33 » Sat Apr 14, 2018 5:23 am

I agree, I hate it when people you are dealing with in customer service can only think one way. It’s the bureacracy that kills the service. A little bit is good, but too much is deadening.

This recent article in The NY Times is on this topic: https://www.nytimes.com/2018/04/07/heal ... ottom-well
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

weisssoccermom
Posts: 5877
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: SO FRUSTRATED! - I hate these 'mega' medical groups

Postby weisssoccermom » Sat Apr 14, 2018 10:11 am

That's a very interesting article and a little scary. I'm not a big fan of those Minute Clinic models. They might be fine once in a while but I wouldn't use one unless absolutely necessary. A few years ago, I cracked a rib in a freak accident....not something big where I would have even considered an injury like that. It was a weekend, I was in a ton of pain, my doctor's after hours clinic was closed so I went to one of those urgent cares over a 4 hour wait in the ER. The doctor was quite old, the people running the X-ray equipment had NO idea what to do (spoke very little English and kept looking at a book for directions.....didn't instill confidence in me). After quite some time, I was told that I had a cracked rib and this old doctor came in and wrapped me VERY tightly around my ribs. In the meantime, because I am close with my GP, I texted her and she replied when I got home and said GET THAT WRAP OFF!! It appears that in the old days, wrapping someone with a cracked rib was 'standard' but nowadays they don't do that....because they have found that it can cause more damage....some of it severe. Ever since then, I won't step foot in an urgent care clinic if I don't have to. I just wonder what type of doctors they employ.....are they young/old....do they have other issues, etc that make them less than desirable? If I really can't get in to see my GP then I will reluctantly go to their practice's after hours clinic which is staffed mostly by PA/NP with one of the practice's GP's always on call for more difficult cases. It's not ideal but at least all of my records are right there.....and these medical practitioners have access to it.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

NHMike
Posts: 1722
Joined: Fri Jul 21, 2017 3:43 am

Re: SO FRUSTRATED! - I hate these 'mega' medical groups

Postby NHMike » Sat Apr 14, 2018 2:36 pm

My GI guy (who was great) just became the CMO of a big hospital and so now I have to find someone else and now I guess I need to keep an eye on my schedule on my own. I really do think that you have to manage things yourself. If the organization takes care of it, great. But it looks like I can't depend on that.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal


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