New here - My cautionary tale

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gobsmacked
Posts: 3
Joined: Fri Oct 05, 2018 11:08 am

New here - My cautionary tale

Postby gobsmacked » Fri Oct 05, 2018 1:34 pm

Hello everyone,

I wanted to share my story in hopes that I might help someone else who may have to go through the same thing.

I was diagnosed stage IV in April 2018 with very rare Bile Duct Cancer at 47 years old . This was based on information from an ultrasound, biopsy (tissue and liquid), MRI and CT scan. This was my first experience with cancer and I was terrified, confused and lost as to how to proceed. I picked an oncologist off the internet based on his location relative to my work / home and went from there. He wanted to start me on chemo ASAP and I was on board to get something going that was going to fight the cancer. I had a power port installed and started Cisplatin + Gemzar within a couple of weeks.

Around that same time, I made an appointment to see a doctor at MD Anderson in The Woodlands, Texas. During that appointment, she agreed with the initial diagnosis but also suggested I go ahead and get a mammogram and colonoscopy to rule those out as primary sites.

When I went back to my local oncologist I told him about the visit to MD Anderson and their recommendations. He rolled his eyes a bit and said that I should have gone to the main MD Anderson in Houston as it was likely that the doctor I saw in their satellite office was just two years out of school. When I told him about her recommendation to get a colonoscopy he stated that he was confident in his diagnosis of Bile Duct Cancer and it would be overkill but he did give me a referral to a GI doctor.
I had an initial consultation with the GI doc but it was going to be several weeks (due to his schedule and my chemo schedule) before he could get me in to do the colonoscopy.

In the meantime, I was struggling with the Cisplatin + Gemzar chemo as it was making me extremely fatigued, nauseous and I was running daily fevers (highest was 103.5). The doctor wrote the fevers off as "tumor fevers" after an ER visit and blood tests that didn't show any infections. After the 3rd cycle I had a CT scan done that didn't show any growth or shrinkage of the tumors but possible necrosis in center of tumors. Doctor ordered a PET scan saying that it would "clear the waters" as to the progress of the treatments.

I had the PET scan and when I went to the doctor for the results he said "the treatment isn't working" (liver was lit up like a Christmas tree) and there was a hot spot in my colon. He changed my chemo to FOLFOX + Erbitux and said he felt confident that the treatment would work better but never bothered to mention that it was his misdiagnosis that had me on the wrong treatment for three months and that was why it wasn't working. This despite my disclosure of a family history of colon cancer in my initial new patient forms and the original biopsy indicating that the liver tumors were likely from either colon or lung cancer. He then recommended that I go ahead and set up an appointment with a home health service that he suggested before my brain "became foggy from pain meds" even though I had not reported any pain to him. He said this was the step before hospice.

At that point I had enough of him and his mismanagement of my treatment. I set up an appointment in a new oncologist and went to see him. He looked over my case file and decided to keep me on FOLFOX but switch out Vectibix for the Erbitux (I was glad for that as I had a reaction to the first dose of Erbitux and I wasn't looking forward to more of that). I accepted him as my new oncologist and he called the GI doctor that was going to do my colonoscopy and asked to move up the procedure. Around this time I also got a call from MD Anderson stating that they had done their own biopsy and felt that the cancer definitely started somewhere in the GI tract.

I finally got the colonoscopy and it did verify that I did have a tumor in my colon and my diagnosis was changed to stage IV CRC with mets to the liver.

The tumor in my colon never showed up in the two CT scans that I had previously done. That might be a bit of an excuse that my first doctor could use for his misdiagnosis but a quick google search will show you that colon tumors are notorious for not showing up in CT scans. Past that, it was his dismissive attitude towards the opinion of the MD Anderson doctor and her recommendation for a colonoscopy as well as his push for me to start home care (felt like he was giving up on me) that made me decide that he was not the doctor for me.

I like my new oncologist and the treatments are working well for me. My CEA has dropped from 2215 to 84 in just five chemo treatments. The last CT scan showed "significant" decrease in liver tumors with the largest three showing almost 50% shrinkage. I am still not eligible for any other treatments other than chemo (tumors still too large) but my new doctor knows I want him to consider any and all treatments that might become available later.

Please be an advocate for your own health and listen to your gut if it's telling you that something isn't right. Look into all feasible avenues for your diagnosis and treatment. To doctors you are just another patient but this is your life and you have to be the your strongest supporter.
4/18 - Dx stage IV liver cancer
5/18 - 7/18 Cisplatin + Gemzar (3 cycles)
7/18 - PET scan - chemo not working & spot in colon
7/18 - Start FOLFOX + Erbitux
7/18 - Chged Dr - start FOLFOX +Vectibix - CEA 2216
8/18 - Colonoscopy verified tumor - Dx chged to CRC w/ mets to liver (multiple & large in all lobes)
8/18 - CEA 576 (8/15) 282 (8/28) - Liver functions back within normal range
9/18 - CT Scan shows "significant" decrease in multiple liver masses (largest shrunken by 50%) - CEA 84

Lee
Posts: 5676
Joined: Sun Apr 16, 2006 4:09 pm

Re: New here - My cautionary tale

Postby Lee » Fri Oct 05, 2018 5:16 pm

Welcome, sorry for the reason you are here.

WOW, so very sorry for all you've been through. Glad you switch Onc, that would have been my first advice. Also getting 2nd opinions are ALWAYS a good idea. I would recommend it with a major cancer hospital or major cancer treatment center. Especially since you are dealing with a stage IV diagnoses.

There are many people on this forum who are stage IV and lead a mostly normal life. This cancer is not the death sentence it once used to be. So dpn't forget that. Also there are many people on this forum who have responded well to Keytruda. Immune therapy is something else which is proving to be successful. Again major cancer hospitals or treatment centers. MD Anderson is one of the best.

Again welcome, you will find a lot of information and support here.

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!

Jannine
Posts: 53
Joined: Wed Jun 20, 2018 7:46 am

Re: New here - My cautionary tale

Postby Jannine » Sat Oct 06, 2018 10:32 am

Yikes, I am so glad that you advocated for yourself and got better care, despite how things started out. Thanks for sharing your experience, and I hope things go very well from here on out for you.

I also had 2 CT scans before my colonoscopy and they both came back as diverticulitis with some bad inflammation (although the 2nd one definitely seemed likely to be something worse than that, given the fat stranding). This was despite having the scans done at a major cancer center hospital. Then I had the colonoscopy 2 days after the second CT scan and that found a 7cm sigmoid colon tumor that was very close to causing a blockage. I just don't have the impression that the CT scan is good at finding colorectal tumors. Colonoscopy is really the only way to find out what's really going on in there.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid colon resection (24 cm removed); no stoma.
1 noncontiguous tumor deposit found and removed; margins clear
7.5cm X 6cm X 2cm adenocarcinoma -- G2 (moderately differentiated)
T3 pN1c M0
31 lymph nodes tested, 0 positive.
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; 2nd infusion delayed because of neutropenia; Neulasta after all future infusions
9/2018: CEA 2.8 at infusion #6

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Maggie Nell
Posts: 818
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: New here - My cautionary tale

Postby Maggie Nell » Sat Oct 06, 2018 1:18 pm

Geez, gobsmacked, I won't even DATE anyone off the internet and you picked an oncologist!! :shock: :D

Glad you're still here to tell the tale! Back in the day when I was studying to be a Naturopath, we were
solemly told to remember that doctors bury their mistakes while herbalists can turn over a new leaf.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX

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CRguy
Posts: 9611
Joined: Sun Feb 10, 2008 6:00 pm

Re: New here - My cautionary tale

Postby CRguy » Sun Oct 07, 2018 1:17 am

gobsmacked wrote:Please be an advocate for your own health and listen to your gut if it's telling you that something isn't right. Look into all feasible avenues for your diagnosis and treatment. To doctors you are just another patient but this is your life and you have to be the your strongest supporter.

Welcome to the forum and YES.....
what I quoted above is exactly what this forum IS all about, so you have found the right place !!!

BUTT .... :shock:
I will offer an aside to your last statement, in that
to SOME doctors you may be just another patient...
to which I would reply : GET ANOTHER DOCTOR !

My GP is a co-navigator WITH ME,
of my life's Journey thru a WHOLE LOTTA SHIT !!!!!
( read my Bio if you have a free weekend ..... :mrgreen: )

IMO : Get a good primary Doc and build your health team from there

Cheers and best wishes
on the Journey y'all

CRguy
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

DarknessEmbraced
Posts: 3126
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New here - My cautionary tale

Postby DarknessEmbraced » Sun Oct 07, 2018 7:31 am

Welcome and sorry that you went through so much! I'm glad you switched oncologists and now have the proper diagnosis!*hugs* I hope your chemo goes well!*hugs*
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

mhf1986
Posts: 148
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: New here - My cautionary tale

Postby mhf1986 » Sun Oct 07, 2018 9:28 am

PREACH!!!! LOUD and OFTEN!

I have often told DH that WE are our own best friends, caregivers, etc. We have seen that if a doctor does not have access to something (drug, machine, trial, etc), then he will say "that won't work" rather than saying "go across the street, they have it."

Where I work, people tell me they are going to shop around for best loan that fits them. Absolutely they should.
Caregiver to DH, dx @ 50, mets to liver/lungs/lymphs, MSS, quad wild
9/16 CEA 114, partial blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
4/17 CEA 11
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX caused hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth/ascites; change to Vectibex + 75% Irinotecan dose
7/18 CEA 23, shrinkage
10/18 CEA 28, growth, considering Lonsurf & trials

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muskokamike
Posts: 207
Joined: Tue Feb 25, 2014 4:38 pm

Re: New here - My cautionary tale

Postby muskokamike » Sun Oct 07, 2018 10:10 am

Maggie Nell wrote:Geez, gobsmacked, I won't even DATE anyone off the internet and you picked an oncologist!! :shock: :D


Seriously that was your first mistake. Sounds like you are on the right course now.
53M Dx rc10/31/13
and a huge WTF?....then
CT scan, BONE scan
MRI/T3N0M0 1 suspicious node
5 wks chemo/rad
LAR open TME 2/26/14
temp ileo
0/24 nodes pCR - pathological
Mop up Folfox (8) Mar/28-Jul/4
Aug/14 clear CT scan
8/27/14 reversal
Feb/15 clear scope
July/15 clear CT scan
Feb/16 clear CT scan
Feb/17 clear CT scan
Feb/18 clear scope
Feb/18 clear CT scan
CEA levels 1.6 dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5
2.6 Sept 18
0-4 normal

gobsmacked
Posts: 3
Joined: Fri Oct 05, 2018 11:08 am

Re: New here - My cautionary tale

Postby gobsmacked » Mon Oct 08, 2018 12:42 pm

Thanks for your replies! It's a good point about not finding a doctor on the internet and get a good GP but that's a whole other part of my story.

I went to my GP with symptoms and she ordered an ultrasound of my liver. When the ultrasound results came back she called me in and sat me down and told me that I had "terminal" cancer and I "should get my affairs in order". Seriously, she told me this after an ultrasound only! She literally started crying as I sat stoically and tried to soak in what she was telling me. She is the one who went on the internet and gave me some doctors to call. She had me in such a panic and thinking I had maybe weeks / months to live that I was just eager to get started on some treatment ASAP. The doctor I chose was a part of a local Cancer Center so I thought how bad could he be. :roll:

To my GP's credit, she did tell me I should go to MD Anderson if possible and got the MRI, CT scan and biopsy authorized and scheduled very quickly.

My new doctor was also found on the internet and is a part of Texas Oncology, od which I've heard good things.

I'm curious as to how other's found their oncologist if not on the internet.
4/18 - Dx stage IV liver cancer
5/18 - 7/18 Cisplatin + Gemzar (3 cycles)
7/18 - PET scan - chemo not working & spot in colon
7/18 - Start FOLFOX + Erbitux
7/18 - Chged Dr - start FOLFOX +Vectibix - CEA 2216
8/18 - Colonoscopy verified tumor - Dx chged to CRC w/ mets to liver (multiple & large in all lobes)
8/18 - CEA 576 (8/15) 282 (8/28) - Liver functions back within normal range
9/18 - CT Scan shows "significant" decrease in multiple liver masses (largest shrunken by 50%) - CEA 84

hiker
Posts: 59
Joined: Thu Aug 09, 2018 10:15 am

Re: New here - My cautionary tale

Postby hiker » Mon Oct 08, 2018 2:41 pm

Prior to my colon resection (done locally) my wife and I met with the surgeon who went through all the tests with us (CT, MRI, ultrasound, etc.) and told me I was terminal and would not have long to live. I passed out cold in his office. When I was coming to, they said I was mumbling something about "...how am I going to tell my kids...who's going to take care of them..." We were going through the options and he didn't think anything could be done, but I guess he felt so bad for me he told me he had heard about Sloan Kettering in NY and that if I were his brother he would tell me to try them.

I didn't call them immediately. In fact, I went to 2 local and 1 regional/national oncologists and one local surgeon hoping to find some help. And I left each appointment feeling desperate and angry. No one was offering anything except chemo for life and that wasn't going to be for long. I remembered my surgeon had mentioned MSK so I looked up their phone number and made a call to their general number. Less than 24 hours later I received a call telling me that I had been assigned my two doctors: Dr. Nancy Kemeny (oncologist) who is known across the country as a leader in HAI pump treatment - she is a true warrior that battles for her patients, and Dr. Michael D'Angelica who is a brilliant surgeon who implants more HAI pumps than any other surgeon in the country. These two work together frequently including clinical trials (one of which I participated in) and appear to have a great working relationship.

When I called MSK I had not a clue what I was looking for other than help. Divine intervention interceded on my behalf and worked out the details. So it was by the grace of a merciful God that I found my incredible doctors.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-present
Clear of cancer since surgery

User avatar
Maggie Nell
Posts: 818
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: New here - My cautionary tale

Postby Maggie Nell » Tue Oct 09, 2018 5:41 am

Telling you to go to MD Anderson for further tests after she's signed your death certificate
is closing the barn door after the horse has bolted!

A primary physician who cannot regulate their own emotions and makes such a devastating
prognosis with minimal information to hand - stealing hope - has not earned a 'pass'.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX

crikklekay
Posts: 56
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: New here - My cautionary tale

Postby crikklekay » Tue Oct 09, 2018 9:03 am

We never got the chance to pick any of our doctors, by the time we were told by our GP to go to the ER for his "constipation" he could barely make it to the door. Found out that day if you can't enter into the ER under your own power you get bumped to the top of the list! I was so surprised when they took us straight to a room in the ER. This was all happening around New Years so we got whoever wasn't on vacation, we're just lucky it was a good team. The GI doctor was wonderful, and he referred us to a surgeon who ended up saving DH's life. By the time he was able to get into the OR he was literally gray, the surgeon said his intestines were dilated and almost to the point of not receiving blood flow which was a huge change from the CT scan only 48 hours prior. She then referred us to an oncologist who came to visit us in the hospital several times, and she has been mostly great through the whole process (my main complaint is the 2 to 3 hours you have to wait AFTER your appointment time to see her, she never runs on time!).

If his cancer diagnosis wasn't an emergency would I have picked the same team? Probably not, we're lucky to have two cancer centers within an hour drive so we would have had our pick. But this team has served us well through this journey and I'm very grateful.
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated w/invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6/22
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/ MSSA infected port, PICC line inserted, abdominal CT scan clear chest CT scan showed septic emboli & blood clots
03/18 Hospital w/ CDIFF
04/18 Chest CT scan clear
06/18 Colonoscopy Clear
08/18 CT Scan Clear, NEMD


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