Calling ALL Colorectal CANUCKS !

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Jen43
Posts: 13
Joined: Sat Mar 23, 2019 9:52 pm

Re: Calling ALL Colorectal CANUCKS !

Postby Jen43 » Sun Mar 24, 2019 5:31 pm

Hi

I am from Canada currently living in Newfoundland.

I am just recently diagnosed with Colon cancer. It was found during a colonoscopy and my GI doctor feels it could be early stage and my CT scan came back clear for Mets. I am meeting with the surgeon on April 1 to get talk about surgery treatment. When I asked my GI dr if I would need to see an oncologist he said he didn’t think I would that hopefully surgery will be enough.

Is it weird not to see an oncologist or is it they need to remove the area before knowing if I will need chemo or radiation.

I am also wondering if I should ask about the PET scan we recently had one placed in the province but I be willing to go out side the province if need be.

Utwo
Posts: 255
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: Calling ALL Colorectal CANUCKS !

Postby Utwo » Sun Mar 24, 2019 9:02 pm

It probably depends on your staging.
For example I never had an oncologist.
58 yo male at diagnosis: T1bN0M0, 0/15 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 with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder and a lymph node

DarknessEmbraced
Posts: 3308
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Calling ALL Colorectal CANUCKS !

Postby DarknessEmbraced » Mon Mar 25, 2019 9:00 am

Hi Jen43,

I'm from New Brunswick. I'm sorry for your diagnosis. I saw an oncologist once despite having no spread of my cancer(stage 2a) It was because my pathology report said lymph vascular invasion undetermined. The oncologist didn't recommend chemo and I have been in remission since surgery in 2014. I can't answer any questions regarding PET scans as they aren't available in my city. They are available in another city an hour or so away from me. I hope you will be able to get a PET scan. :)
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

mozart13
Posts: 152
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Calling ALL Colorectal CANUCKS !

Postby mozart13 » Mon Mar 25, 2019 9:12 pm

Jen43 wrote:Hi

I am from Canada currently living in Newfoundland.


Sorry to hear Jen, when it comes to diagnosis, MRI would be good idea, to get proper staging.
Surgeon is the one that initiate whole process. Onco comes once surgeon decide to proceed with chemo, and if radiation is involved, then they make combined decision(surgeon, oncologist and radiologist), which way to proceed. Surgeon is the one with most say in the whole process.

Good luck to you!
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to the forum , so if this is not updated it means I remain negative!
Wish good luck to all!

CF_69
Posts: 65
Joined: Sat Dec 22, 2018 9:44 pm

Re: Calling ALL Colorectal CANUCKS !

Postby CF_69 » Sat Mar 30, 2019 2:23 am

I just had surgery on tuesday. The doctor said he left me over half my rectum and was able to reconnect me, so no bag.

Hoping to get discharged tomorrow. I am disconnected from all needles and tubes already. Getting Tylenol for the pain.

Had a few bm’s already.

I’m feeling pretty good about the future for the first time in months.

Tumour found in October, so 5 months between finding it and getting it out.

Meeting with my Oncologist in about 10 days from now.
47 year old male
Distal sigmoid near rectosigmoid junction adjacent to upper rectum
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0 after pathology
CEA 1.9
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
4 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.

Stewsbetty
Posts: 170
Joined: Thu Jul 14, 2016 7:08 am

Re: Calling ALL Colorectal CANUCKS !

Postby Stewsbetty » Sun Mar 31, 2019 9:56 am

Jen43 wrote:Hi

I am from Canada currently living in Newfoundland.

I am just recently diagnosed with Colon cancer. It was found during a colonoscopy and my GI doctor feels it could be early stage and my CT scan came back clear for Mets. I am meeting with the surgeon on April 1 to get talk about surgery treatment. When I asked my GI dr if I would need to see an oncologist he said he didn’t think I would that hopefully surgery will be enough.

Is it weird not to see an oncologist or is it they need to remove the area before knowing if I will need chemo or radiation.

I am also wondering if I should ask about the PET scan we recently had one placed in the province but I be willing to go out side the province if need be.


Hi jen43,
I am on the other side of the country from you but here is my experience. My cancer was in the right ascending part of my colon. This meant surgery first. After removing the tumour and surrounding lymph nodes they were sent for tumour testing. This is when it was determined I was stage 3. Then I was referred to the oncology. I asked about a PET and they said CT was all for now. After I completed my chemo I still had one node showing up in the CT so then they sent me for a PET. I think they are pretty tight on doing the PETs as most provinces have way fewer of them.
Hope things go smoothly for your surgery.

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 scans every 3 months showing shrinkage and stability to present
November 2018 CT shows only 1 small tumour left

Jen43
Posts: 13
Joined: Sat Mar 23, 2019 9:52 pm

Re: Calling ALL Colorectal CANUCKS !

Postby Jen43 » Sun Mar 31, 2019 12:54 pm

Thank you all for the reply’s. The information you have given me has made me feel a little like I know what is going on. This site has given me so many questions. I go tomorrow to meet with the surgeon I am hopeful to get this started but scared at the same time.

Will let you know what the surgeon has to say.

User avatar
CRguy
Posts: 9956
Joined: Sun Feb 10, 2008 6:00 pm

Re: Calling ALL Colorectal CANUCKS !

Postby CRguy » Sun Mar 31, 2019 11:30 pm

mozart13 wrote:
Jen43 wrote:Hi
I am from Canada currently living in Newfoundland.

Sorry to hear Jen, when it comes to diagnosis, MRI would be good idea, to get proper staging.
Surgeon is the one that initiate whole process. Onco comes once surgeon decide to proceed with chemo, and if radiation is involved, then they make combined decision(surgeon, oncologist and radiologist), which way to proceed. Surgeon is the one with most say in the whole process.
Good luck to you!


BUTT .... :shock: you just KNEW there had to be at least ONE !!!!

CRguy's rules for dealing with specialists :
1. never take surgery advice from an oncologist
2. never take oncology advice from a radiologist
3. never take radiology advice from a surgeon
:twisted: if you get my drift

Yes, one primary Doc will take the lead initially, and while all SHOULD be in the loop .... see the above "rules".

Sometimes, once a biopsy has been done, by the surgeon ... things move to neoadjuvant chemoradiation before full resection... (= my situation)
Sometimes chemoradiation is enough, BUTT close surveillance afterwards is required.... (= watch and wait)
Sometimes chemo is required first to get a patient to a resectable state with surgery.... (="downstaging")
Sometimes surgery is enough ... BUTT close surveillance afterwards is required ... (=also a watch and wait scenario)

The only rule in dealing with cancer is : cancer doesn't play by the rules

BE as aggressive and proactive as you can
keep us in the loop and we will help with any info we can

One step ahead of the other ...
breathe in ... breathe out
repeat as needed until you get the answers you need and the treatments you need

Hoping for good feedback from your doc visit tomorrow Jen43

Harmony on the journey
Cheers from the west coast out to the Rock ! :mrgreen:
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

User avatar
O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

Re: Calling ALL Colorectal CANUCKS !

Postby O Stoma Mia » Mon Apr 01, 2019 12:30 am

Jen43 wrote:... I go tomorrow to meet with the surgeon I am hopeful to get this started but scared at the same time..

Jen43 -

Good luck on your meeting with the surgeon.

Here are some things you might want to discuss during your meeting:

First Meeting with Surgeon
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=60747&p=481109#p481109

Jen43
Posts: 13
Joined: Sat Mar 23, 2019 9:52 pm

Re: Calling ALL Colorectal CANUCKS !

Postby Jen43 » Mon Apr 01, 2019 2:35 pm

Lol thank you for all the butt comments it made me laugh.

I am not sure yet if my appointment was good or bad, I guess it wasnt bad just not sure I know a lot more then I did before.

I can have my surgery in my local hospital but the surgeon said I should have it in St.Johns since the don’t have platelets here but there they do and I have low platelets and an enlarged spleen. I also have cirrhosis of the liver and they have more testing equipment so I agreed that I would travel to have surgery of course this means being away from home for awhile which sucks.

He also suggested I have my full colon removed cause I am so young and less worry about it return to the colon I am not sure how I feel about this at all. I sorta thought I just have part or half removed. I am not sure what is the best option for me. Any advice on this would be great.

The only thing I do know I s the cancer through biopsy looked like normal colon cancer but it was small enough it didn’t show up on my cat scan.

User avatar
CRguy
Posts: 9956
Joined: Sun Feb 10, 2008 6:00 pm

Re: Calling ALL Colorectal CANUCKS !

Postby CRguy » Sun Aug 11, 2019 11:50 am

Just heard an interview on CBC about this new network of scientists, clinicians, cancer stakeholders, academic institutions, NGOs and industry partners working together to accelerate the development of leading edge immune oncology therapies for the benefit of patients.

BioCanRx

BioCanRx is becoming a world-leader in the translation, manufacture and adoption of cancer immunotherapies. Through an innovative, collaborative research funding process, BioCanRx invests in translating Canadian technologies from the lab into early phase clinical trials, and addresses socio-economic considerations necessary for their adoption by health-care systems. The network is committed to training and developing the talent needed for a thriving health biotechnology sector in Canada. BioCanRx receives funding from the federal government’s Networks of Centres of Excellence, and support from industry, the provinces and charities.


Just an FYI for any Canadian members who wish to learn more.

Cheers
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

CF_69
Posts: 65
Joined: Sat Dec 22, 2018 9:44 pm

Re: Calling ALL Colorectal CANUCKS !

Postby CF_69 » Sun Aug 11, 2019 2:44 pm

Nice.

I got invited (aggressively) to participate in a study since I’m under 50.

I opted in and sent the permission letter in a few weeks ago, but haven’t heard back yet.
47 year old male
Distal sigmoid near rectosigmoid junction adjacent to upper rectum
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0 after pathology
CEA 1.9
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
4 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.

User avatar
CRguy
Posts: 9956
Joined: Sun Feb 10, 2008 6:00 pm

Re: Calling ALL Colorectal CANUCKS !

Postby CRguy » Sun Aug 11, 2019 10:31 pm

Hey homie
Keep on kickin' BUTT and keep us in the loop !!

Cheers
CR
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far


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