Surgeon has me feeling horrible

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Detox
Posts: 32
Joined: Fri Apr 28, 2017 5:27 pm

Re: Surgeon has me feeling horrible

Postby Detox » Sat May 26, 2018 10:05 am

Since you are young, the doctors can be aggressive with the treatment. My oncology nurse said young patients always respond to chemo so once you have your tumor burden reduced, which is more than likely, you should be able to have surgery to remove the remaining lesions on your liver, resect your primary colon tumor and reach NED status.

lovelife789
Posts: 114
Joined: Thu Aug 24, 2017 5:28 am

Re: Surgeon has me feeling horrible

Postby lovelife789 » Sat May 26, 2018 11:22 am

That Dr is full of.....

I'm 38. Initially inoperable with 6 fat liver mets, the largest was 8cm.

6 x rounds of folfox + erbitux later, all shrank by 50%.
Became operable. All removed, clear margin.
2 surgeries later, NED.

I remember my Onc said about 70-80% of patients respond well to chemo.

Get a 2nd opinion.
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sig. Colon, 6 Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Moderately differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - Clear PET SCAN - CEA 1.4
3/18 - Clear MRI - CEA 0.8
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
Aug - VATs done, colon met cfm

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MikeManess
Posts: 83
Joined: Fri Apr 01, 2016 3:56 pm
Location: Forney, Texas

Re: Surgeon has me feeling horrible

Postby MikeManess » Sat May 26, 2018 8:28 pm

Doctors. Sometimes they're so smart that they're stupid.

In my case, stage 4 with 4 liver mets. I want on chemo, Two mets disappeared, two shrunk. Had livery surgery. Pathology on the removed part of the liver showed no active cells, only necrotic tissue.

Don't let a surgeon tell you anything. Get to a major cancer center. I have two oncologists - a medical and a surgical. Both are oncologists - one deals with robotic knives, one deals with potions, snake oil, and elixars. Both methods in concert work.
3/11/16 Colonoscopy - 9 benign polyps, 1 large cancerous tumor in right ascending colon
4/19/16 Right colectomy
6/3/16 Two liver spots detected, added Avastin to Folfox
12/20/16 Liver surgery. Pathology shows no active cancer cells
6/7/17 Final chemo
12/5/17 Port removed
05/23/18 Liver tumor discovered in scans

DarknessEmbraced
Posts: 3156
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Surgeon has me feeling horrible

Postby DarknessEmbraced » Mon May 28, 2018 2:15 pm

I'm sorry you had such a bad experience with the surgeon and hope you won't have to wait long for a second opinion!*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

Trying
Posts: 68
Joined: Sun May 13, 2018 10:11 pm

Re: Surgeon has me feeling horrible

Postby Trying » Mon May 28, 2018 8:36 pm

Thanks for all the encouraging words
38 yr old single mom of almost 2 yr old.
Colon cancer stage IV 10 liver mets April 2018
Folfox as of June 2018

stu
Posts: 878
Joined: Sat Aug 17, 2013 5:46 pm

Re: Surgeon has me feeling horrible

Postby stu » Tue May 29, 2018 1:43 am

Hi ,
Now with this team of experienced supporters behind you it’s time to “deal” with those rouge cells and get you back on the path to wellness.
Keep us updated ,
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 .

VeggieLvr
Posts: 58
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Surgeon has me feeling horrible

Postby VeggieLvr » Thu May 31, 2018 11:59 am

Hi Trying, I'm still at the beginning of my cancer journey, so I don't have much experience behind me yet, but wanted to share my little story with you. I had an excellent surgeon for my colon resection, but I remember at my first checkup with him post-surgery (before I started chemo) I asked him "How much chemo do you think I will need?" His response was "Well, most Stage IV patients are on chemo for life - it doesn't mean it's a death sentence but it's more like how patients with diabetes have to manage that for life." Not what I wanted to hear - then I saw him for another follow up a few weeks ago (after my third chemo treatment) and I was complaining about my port, he said "Well one day they will take it out and this whole cancer experience will be behind you - you just have to get through it for now." Totally different than what he said originally! The truth is surgeons really don't know - they may have some experience but nothing near what your oncologist does, not even close.
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

Stewsbetty
Posts: 135
Joined: Thu Jul 14, 2016 7:08 am

Re: Surgeon has me feeling horrible

Postby Stewsbetty » Fri Jun 01, 2018 1:42 am

Trying wrote:Thank all of you so very much. I am in canada b.c.


I’m another BC’er. Up in the north. I use the Prince George BCCA. I don’t have much to add except out journeys don’t always go as expected.

Pm me if you want to vent frustration about the BCCA. :)

Beth
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda
Nov 2017 CT scans show significant shrinkage in tumours
Feb 2018 CT continued shrinkage
May 2018 CT shrinkage and stable spots

CAGirl
Posts: 53
Joined: Fri Aug 25, 2017 4:55 pm

Re: Surgeon has me feeling horrible

Postby CAGirl » Fri Jun 01, 2018 2:04 pm

I also just want to add another "screw that doctor" to this thread.

Had an initial consult with an oncologist who told me I had a 30% chance of being alive in five years.

From this forum -- and other stories -- I picked myself up and got a second opinion and then chose yet a third doctor. The two other docs gave me closer to 75-80%. Stats are just stats, but I really needed someone in charge of my care who believed I could fight it. Throughout the year, he seemed like a straight shooter and wasn't giving me any false hope, but he told me he had no reason to assume (based on my specifics, young age, general health and his experience) that doing all I could (surgery, chemo, exercise) wouldn't work.

That first doc might end up being right in the end, but damn, I'm glad that for now I'm going with the others' opinions.
Dx 2/2017, age 45, 2 kids: 6 yrs & 3 yrs
History of Crohn's disease - dx in 1997; in remission, thus no colonoscopy in over 10 years
Anemia dx 11/16: GI doc assured me "the likelihood of colon cancer" was "very low".
Stage 3C - T3N2b
8/64 lymph nodes; clear margins surgery 3/17
12 cycles of Folfox 4/17-9/17
3-month CT scan midway through chemo, no changes
2-3-month CT scan post chemo 11/17 slightly larger lung nodule (incr. from 7mm to 8 or 9mm)
follow-up CT scan 3/18 - NED!

Allen
Posts: 9
Joined: Fri Jun 01, 2018 2:29 pm
Facebook Username: Allen

Re: Surgeon has me feeling horrible

Postby Allen » Fri Jun 01, 2018 2:38 pm

Hi, all. New to board and first post here.

I was compelled to sign up and post in order to reply and hopefully offer some words of comfort. Your surgeon is clueless. I was diagnosed in Dec. of last year with primary tumor at rectosigmoid junction, and single tumor on the liver (biopsy proven). After 6 courses of FOLFOX, the liver lesion was completely obliterated. I had surgery a month ago and the surgeon could not find it - and even on microscopic analysis, the pathologist found no evidence of the tumor.

Please try to put these negative thoughts out of your head and focus on the positive. I agree with a prior poster who said you'll feel a whole lot better when you have a plan. I would add that having a physician (onc, colorectal surgeon and/or liver surgeon) who is positive and inspires confidence is great for your outlook...and I believe, great for your outcome also. Get to an institution with a solid reputation for treating these problems. Too far away for you, but I'll put in a plug for Johns Hopkins in Baltimore. I can't say enough about everyone there.

Best of luck to you.


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