Pissed off with my GI!!

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DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Pissed off with my GI!!

Postby DarknessEmbraced » Tue Aug 17, 2021 11:32 am

My GI's receptionist got back to me by email. She say I'm booked for a follow up by telephone on October 8th! My colonoscopy was on July 20th! It goes to show how little he cares about me. He only saw me for a couple of minutes while I was hospitalized and seemed more upset that the other doctor had sent me for a CT scan than anything else. I can't switch GIs because there are only 3 here. I guess I'll just have to suffer between now and October 8th! I have a telephone appointment with my family doctor on September 15th.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

skb
Posts: 100
Joined: Tue Mar 28, 2017 2:00 pm

Re: Pissed off with my GI!!

Postby skb » Wed Aug 18, 2021 9:38 am

Hi,
Sorry to hear that. Perhaps the results of your CT and colonoscopy are all ok and hence the delayed follow up meeting.

Please ask for the results to be emailed to you

skb
3/21/17: Dx T3N0M0-mid rectal 4.5cm
4/18 to 5/22/17: chemoradiation- Xeloda and daily radiation (25 doses)
6/28/17: clean biopsy, clean scans
8/17: MRI - no evidence of tumor, no surgery, starts wait and watch
8/17 to 12/17: Folfox
8/19 VATS - 1cm lung nodule
7/17/21- Clean CT, CEA 15.6 !
8/24/21- PET , biopsy finds met along obturator lymph nodes
10/1/21- Surgery , 12 rounds of FOLFIRI -ended 4/22
4/15/22, 9/6/22. 1/20/23- Clean scan, normal CEA
10/23- four sub-centimeter lung nodules, all PET negative

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Pissed off with my GI!!

Postby stu » Wed Aug 18, 2021 3:18 pm

So unlike you to ever complain ! So sorry you are not being given the time and care you need !
That is far too long to wait !
Take care ,
stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

Re: Pissed off with my GI!!

Postby roadrunner » Wed Aug 18, 2021 4:36 pm

Sorry if I missed this before, but this oncologist’s approach sounds really bad and even potentially negligent. You said there were “3 [there].” Is there a reason the other two are actually worse than this one, or unavailable for some other reason? Not trying to be aggravating (if I recall right you’re in Canada), just wondering if there’s any better path forward.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

Nor Cal
Posts: 89
Joined: Sun Dec 06, 2020 8:18 pm

Re: Pissed off with my GI!!

Postby Nor Cal » Wed Aug 18, 2021 6:48 pm

Not sure how it works in Canada, but I would call them and let them know that this is unacceptable, and that you would like a copy of the report as well as a phone call ASAP to briefly discuss the results.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. CEA 120.
BRAF+ TMB 5% MSS TDL1-1%
July 2020 - Present: 55 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2

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O Stoma Mia
Posts: 1709
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Location: On vacation. Off-line for now.

Re: Pissed off with my GI!!

Postby O Stoma Mia » Thu Aug 19, 2021 3:55 am

  • Apparently, it is possible for you to receive a copy of your health records, but you need to work within "the system". "The system" is described below.
    Dr. Everett Chalmers Regional Hospital, Fredericton, NB

    Due to visitor restrictions associated with COVID-19, in-person visits are not permitted.

    The Health Records department is closed to visitors. As we work to limit the number of people entering Horizon facilities during the COVID-19 outbreak, remember, there are alternate ways to receive personal health record information.

    If you require access to your health records, do not visit in-person.

    Instead you can submit a Patient Access Release Form electronically. Download it by clicking HERE and email or fax the authorization form back to the area where the inquired information from the medical appointment occurred (E-mail: ROIFredericton@HorizonNB.ca ; Fax: 506-452-5233).

    If you experience issues accessing the form on our website, please call or email the appropriate area, and a form will be sent to you.

    Our Health Information Management team will mail copies of the records to patients requesting information, which will save people from making a trip to the hospital. Please note, health records will not be sent by email.

    Reference: https://en.horizonnb.ca/home/facilities-and-services/services/other-services/personal-health-records.aspx
    If you need help in printing, scanning, faxing your request, you could try contacting one of the nearby print shops, for example, Office Complete, 440 King St, Fredericton, NB E3B 5H8, Tel. 506-455-3278
    .
  • The three gastroenterologists registered to practice in your town are listed HERE. You could try putting in a request to switch to one of the other two.
    .
  • HERE are the rating for the gastroenterologists in and around your town. Click on the name of your doctor to see his ratings.
Last edited by O Stoma Mia on Thu Aug 19, 2021 7:15 am, edited 1 time in total.

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Pissed off with my GI!!

Postby DarknessEmbraced » Thu Aug 19, 2021 5:39 am

skb,

I was told by the doctor following me in the hospital that my GI said after the colonoscopy that it looked like mild ischemic colitis. They won't send results by email.

Stu,

Thank you.


roadrunner,

I don't have an oncologist. Because I didn't need chemo in 2014, the oncologist referred me back to my family doctor. She scheduled CT scans and follow up blood tests. Here specialists triage patients like they do in the ER. If they believe it's not urgent the wait can be several months to well over a year. I waited 15 months to see my endocrinologist the first time. I may have an even longer wait to see another GI. Also once I have a specialist my family doctor hasn't allowed me to switch doctors. Yes, I live in Fredericton, New Brunswick, Canada.

Nor Cal,

Calling them won't help as they only give results over the phone during telephone appointment.


O Stoma Mia,


Thank for the form and the other information. I will use the form to try to have the results mailed to me.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

Re: Pissed off with my GI!!

Postby roadrunner » Thu Aug 19, 2021 1:59 pm

Sorry, I mistakenly wrote “oncologist” when I meant “gastroenterologist.” I echo O Stoma Mia’s suggestion that you consider one of the other two gastroenterologists if at all possible.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

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O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Request form submission

Postby O Stoma Mia » Fri Aug 20, 2021 3:45 am

DarknessEmbraced wrote:... Thank for the form and the other information. I will use the form to try to have the results mailed to me.

Tip: When filling out the form, please try to be very precise and concise when completing the "Specific Health Information" field. Do not ask for a lot of medical records. Just request the one report that you are most concerned about right now.

In addition, be very precise about where the test/exam was done, who the doctor was, the date of the exam, etc. The more precise your description of the report, the more likely it is that they will be able to find it and photocopy it.

For example, if you are mainly concerned about the pathology report arising from the biopsy from your last colonoscopy, then make it very clear that what you need is the pathologist's report -- it might be an appendix of the colonoscopy report, or it might be a separate document issued by the particular pathology department that the biopsy specimen was sent to. Also, the date of the pathology report might be several days after the exam/biopsy itself. (For your previous pathology reports, where did the document originate, and what date did the pathology report show compared to the date the biopsy specimen was actually taken ?)

Since there is not much space on the form itself, you might need to attach an annex that describes in detail what you are looking for.

After you have completed the form and sent it off, be sure to keep a copy of it along with a record of the date and time when you sent it off.

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Pissed off with my GI!!

Postby DarknessEmbraced » Sat Aug 21, 2021 7:16 am

O Stoma Mia,Thank you. I filled out the form to the best of my ability. All testing is done at our one hospital. The pathologist at our hospital is the one who would be looking at the biopsies. The form was sent to the records office of our hospital. I put the date for the CT scan report. the colonoscopy report and the biopsy report. I didn't put the doctor's names because they have my medicare number. They should be able to use that to find any tests and the results. I will provide them with more information if they ask. I was sent an email telling me that my request was received. If they have any issues they can contact me by email. My doctors are able to look up my results on their computer. I assume by using my name and medicare number.


roadrunner, I can't switch to one of the other two GIs because specialists here triage patients like they do in the ER. If they believe it's non urgent the wait can be several months to well over a year. I waited 15 months for my first appointment with the endocrinologist. He's the only endocrinologist. Also once I have a specialist my family doctor won't refer me to someone else. The only time that happened was when I forgot the name of the ENT I saw and was sent to another ENT in the same office.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Pissed off with my GI!!

Postby DarknessEmbraced » Sat Oct 09, 2021 11:42 am

My GI was supposed to call me yesterday morning. He didn't call at all and there was no explanation. I emailed his receptionist asking what had happened. I didn't receive a response. Monday, is Thanksgiving so I won't receive a call until at least Tuesday. I can't change doctors because of the doctor shortage. If I tried to see someone else in his office; the wait could be from several months to well over a year. Sorry, for venting, but I'm just really upset over this. I have the biopsy report, colonoscopy report and abdominal CT report but the the diagnosis was not clear. My family doctor said only my GI would be able to tell me.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

User avatar
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Pissed off with my GI!!

Postby O Stoma Mia » Sat Oct 09, 2021 10:06 pm

Image

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Pissed off with my GI!!

Postby DarknessEmbraced » Sun Oct 10, 2021 7:33 am

Thank you O Stoma Mia! I'm sorry that I've been venting lately. I'm just really frustrated.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

User avatar
WriterGirl1969
Posts: 524
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Pissed off with my GI!!

Postby WriterGirl1969 » Wed Oct 13, 2021 7:45 pm

DarknessEmbraced wrote:My GI was supposed to call me yesterday morning. He didn't call at all and there was no explanation. I emailed his receptionist asking what had happened. I didn't receive a response. Monday, is Thanksgiving so I won't receive a call until at least Tuesday. I can't change doctors because of the doctor shortage. If I tried to see someone else in his office; the wait could be from several months to well over a year. Sorry, for venting, but I'm just really upset over this. I have the biopsy report, colonoscopy report and abdominal CT report but the the diagnosis was not clear. My family doctor said only my GI would be able to tell me.


Yikes! No wonder you're frustrated. I know I certainly would be, too. That's just horrible. I know you said there are only 3 GIs in your area, but any chance one of the other 2 would be any better? Yeesh. So sorry you have to go through that. It's bad enough we have to deal with cancer and the anxiety around our testing. Poor treatment like this adds insult to injury -- literally.
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Pissed off with my GI!!

Postby DarknessEmbraced » Sat Oct 16, 2021 7:42 am

Thank you WriterGirl1969. Yes, it is. I'm lucky that I didn't need chemo but there's still anxiety over what's going on with me. The GIs all share an office. Specialists here triage patients like they do in the ER. If they believe it's non urgent the wait can be several months to well over a year. I can't wait that long so I'm stuck with my GI. I read patient reviews of one of the other GIs. It said he was rude and condescending with a horrible bedside manor.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)


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