Port decision

Please feel free to read, share your thoughts, your stories and connect with others!
Catlady
Posts: 5
Joined: Sun Aug 04, 2024 11:25 am

Port decision

Postby Catlady » Sun Aug 04, 2024 12:21 pm

Hey all,

If all goes well without any more delays, I should finish my folfox6 on September 18. I expected to have my port removed shortly after that last treatment but when I asked my oncologist he said I could have it removed anytime after treatment but, he preferred it to stay in for 2 years! Now I don’t know what to do. Is recurrence or metastasis very common in a 2 year period with stage lllb? It makes me feel like the cancer is there when it’s in me, so it bugs me. Dumb reason, I know. I would prefer only one more surgery not 3 so I guess I’m looking for percentages of recurrence and if it would be a dumb move to have it removed prior to 2 years.

Thanks ~
Catlady
61 female
1/25/24 diagnosed stage IIIb T3N1M0
CEA <2.0
1 of 10 nodes positive
2/19 right hemicolectomy
3/19 ct scan - lung nodules small benign
3/29 port installation
4/1 start mfolfox6
6/21 Ct scan lung nodules unchanged
7/9 ct scan abdominal as CEA went up to 3. NED
10/4 last treatment (12 rounds)
10/23 CT Scan NED. CEA 2.6
11/20 port removed

User avatar
CRguy
Posts: 10503
Joined: Sun Feb 10, 2008 6:00 pm

Re: Port decision

Postby CRguy » Sun Aug 04, 2024 6:38 pm

Welcome to the forum Catlady
If you care to peruse my summary in the topic post of my
Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ May /2024

you will see I had a recurrence at about 2.5 years after initial resection, had a port implanted and was DE-ported :shock: about 3 years later

This is my experience which I share with you and if your Doc says maybe keep it longer then ......
you might want to give that some serious consideration

JMO and Your Mileage May Vary
BUTT ... BTDT
and hoping you won't have to !!!

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

User avatar
Green Tea
Posts: 545
Joined: Mon Oct 24, 2016 10:48 am

Colon cancer recurrence

Postby Green Tea » Mon Aug 05, 2024 3:58 am

Catlady wrote:Hey all,
.... Is recurrence or metastasis very common in a 2 year period with stage llIB? ...
Thanks ~
Catlady

"After a first colon cancer, 80% of recurrences happen in the first two to three years..."


Catlady
Posts: 5
Joined: Sun Aug 04, 2024 11:25 am

Re: Port decision

Postby Catlady » Mon Aug 05, 2024 2:20 pm

Well, that’s not very reassuring. I’m disappointed and colon cancer is a jerk. Thanks for your responses. I’ll go eat some chocolate and mope for a bit now.
61 female
1/25/24 diagnosed stage IIIb T3N1M0
CEA <2.0
1 of 10 nodes positive
2/19 right hemicolectomy
3/19 ct scan - lung nodules small benign
3/29 port installation
4/1 start mfolfox6
6/21 Ct scan lung nodules unchanged
7/9 ct scan abdominal as CEA went up to 3. NED
10/4 last treatment (12 rounds)
10/23 CT Scan NED. CEA 2.6
11/20 port removed

User avatar
Green Tea
Posts: 545
Joined: Mon Oct 24, 2016 10:48 am

Three Pillars of Survivorship

Postby Green Tea » Tue Aug 06, 2024 3:18 am

For Stage IIIB patients. I think that the best strategy to follow in order to minimize recurrences is the "Three Pillars of Survivorship" strategy -- especially during the first two years of the treatment followup period. There are many Stage IIIB patients who have reached total remission by diligently following this strategy:

 Follow-Up Care, Surveillance Protocol, and Secondary Prevention Measures for Survivors of Colorectal Cancer
https://www.ncbi.nlm.nih.gov/pubmed/24220554

Three Pillars of Survivorship
viewtopic.php?f=1&t=10574&p=509797#p509797

Pagola44
Posts: 422
Joined: Mon Jul 03, 2023 7:57 pm

Re: Port decision

Postby Pagola44 » Tue Aug 06, 2024 6:45 am

This is very interesting
I am also 3b, pretty much the same diagnosis as you.
my oncologist didn't say to leave it in for 2 years, he didnt' seem very fussed about it.
It's interesting he told you 2 years.
29m Male.
DX: CC, Right Hepatic Flexure, 4cm, T3, G2, M0
Stage III3B , Positive lymph nodes: (2/20)
Baseline CEA value: 1.98
LVI and PNI: absent
Surgical margins: clear
No lynch Syndrome or MSI
Primary surgery type: Laparascopic

Catlady
Posts: 5
Joined: Sun Aug 04, 2024 11:25 am

Re: Port decision

Postby Catlady » Tue Aug 06, 2024 4:21 pm

Green Tea,

I did the 3 things to begin with listed here. However, I smoked 1/2 a pack a day and had weekend drinks. Once diagnosed the bad habits quit immediately.

I ready to have enough energy to get back in my weight room and hopefully get back to lifting as heavy as I did prior to all this.

Thanks for the info.
61 female
1/25/24 diagnosed stage IIIb T3N1M0
CEA <2.0
1 of 10 nodes positive
2/19 right hemicolectomy
3/19 ct scan - lung nodules small benign
3/29 port installation
4/1 start mfolfox6
6/21 Ct scan lung nodules unchanged
7/9 ct scan abdominal as CEA went up to 3. NED
10/4 last treatment (12 rounds)
10/23 CT Scan NED. CEA 2.6
11/20 port removed

User avatar
horizon
Posts: 1678
Joined: Tue Apr 12, 2011 10:10 pm

Re: Port decision

Postby horizon » Sun Sep 22, 2024 1:06 pm

Catlady wrote:I ready to have enough energy to get back in my weight room and hopefully get back to lifting as heavy as I did prior to all this.


I was like you and thought the port was coming right out after chemo was done. I did a "say what" face when I learned that wasn't going to be happening.

I didn't let the port stop me from hitting the gym.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 13 years NED). Is this real life?

michelle c
Posts: 1931
Joined: Wed Dec 02, 2009 3:58 am

Re: Port decision

Postby michelle c » Wed Oct 02, 2024 6:25 am

My surgeon and onc said to remove it after treatment finished. I was a little scared and wanted to keep it a little longer, I told my surgeon that I didn’t want to jinx myself. He smiled at that but still thought he should remove it. My port was a “good one” as reported by all the chemo nurses. I had to go in and get it flushed every so often to keep the line patent. If you want it out though, do it. It should be your decision.
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair

roadrunner
Posts: 516
Joined: Sun Jan 12, 2020 8:46 pm

Re: Port decision

Postby roadrunner » Wed Oct 02, 2024 11:39 am

Catlady: This is really just a risk decision. What are the odds you’ll need it? It concerns me that your signature says your CEA is “creeping up.” Has that resolved favorably? Are there any other prognostic factors either way? *Why* does your oncologist want you to keep it? Your psychological perspective is, of course, relevant, but IMO should be weighed in that context.

The removal and insertion of ports is not a huge thing, but they can have significant consequences. I developed a life-threatening UE-DVT as the result of a difficult insertion.
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
Chest CT 3/30/21 growth 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy 7/7/23
5 cycles FOLFOX
APR 6/24. NED for now

montezuma
Posts: 14
Joined: Sat Oct 17, 2020 1:45 pm

Re: Port decision

Postby montezuma » Thu Oct 03, 2024 10:15 pm

I don’t think it really matters. I had mine removed after my ileostomy reversal, but later I had another installed with my recurrence. Even if I beat cancer this go around, I’ll probably hang onto it until I have been NED for 4-5 years. It can be annoying at times like when my backpack strap puts pressure on it, but most of the time, I don’t notice it. I wear it like a badge of honor.
DX 45 yrs old
12/19 CEA 1.8
1/7/20 Stage IIIA RCa, T3N1. 5.8cm from AV
5.8cm AV, 3mm beyond rectal wall, 2 involved mesorectal lymph nodes
neoadjuvant:
1/19 - 5/19 chemo - XELODA, FOLFOX - 8 rounds
5/19 - 6/19 radiation w/ Capecitabine
9/20 EUS Pathology, 6-7cm from AV
Residual moderately differentiated rectal adenocarcinoma
11/3/20 LAR, TME
Results: 11/5/21, 1 out of 12 lymph nodes positive
12/20-1/21 chemo -XELODA, FOLFOX - 4 rounds
2/21 resection & port removal
3/23 CEA 10.8
4/23 MRI new tumor

Catlady
Posts: 5
Joined: Sun Aug 04, 2024 11:25 am

Re: Port decision

Postby Catlady » Sat Oct 19, 2024 10:10 am

roadrunner wrote:Catlady: This is really just a risk decision. What are the odds you’ll need it? It concerns me that your signature says your CEA is “creeping up.” Has that resolved favorably? Are there any other prognostic factors either way? *Why* does your oncologist want you to keep it? Your psychological perspective is, of course, relevant, but IMO should be weighed in that context.

The removal and insertion of ports is not a huge thing, but they can have significant consequences. I developed a life-threatening UE-DVT as the result of a difficult insertion.


My CEA was at <2.0 then crept to 3 and was 2.8 at my last check. I’ll have a ct scan next week to see what’s going on inside and go from there. I’ve decided if it’s NED this time then I’ll ask to have the port removed. Just having my shirt touch it can bother me.
61 female
1/25/24 diagnosed stage IIIb T3N1M0
CEA <2.0
1 of 10 nodes positive
2/19 right hemicolectomy
3/19 ct scan - lung nodules small benign
3/29 port installation
4/1 start mfolfox6
6/21 Ct scan lung nodules unchanged
7/9 ct scan abdominal as CEA went up to 3. NED
10/4 last treatment (12 rounds)
10/23 CT Scan NED. CEA 2.6
11/20 port removed

Pagola44
Posts: 422
Joined: Mon Jul 03, 2023 7:57 pm

Re: Port decision

Postby Pagola44 » Sun Oct 20, 2024 2:35 am

Catlady wrote:
roadrunner wrote:Catlady: This is really just a risk decision. What are the odds you’ll need it? It concerns me that your signature says your CEA is “creeping up.” Has that resolved favorably? Are there any other prognostic factors either way? *Why* does your oncologist want you to keep it? Your psychological perspective is, of course, relevant, but IMO should be weighed in that context.

The removal and insertion of ports is not a huge thing, but they can have significant consequences. I developed a life-threatening UE-DVT as the result of a difficult insertion.


My CEA was at <2.0 then crept to 3 and was 2.8 at my last check. I’ll have a ct scan next week to see what’s going on inside and go from there. I’ve decided if it’s NED this time then I’ll ask to have the port removed. Just having my shirt touch it can bother me.


Prays for you! Hope it's all good
I am also stage 3b, very similar to you, i think ill also get mine out if my scan is good early next year.
29m Male.
DX: CC, Right Hepatic Flexure, 4cm, T3, G2, M0
Stage III3B , Positive lymph nodes: (2/20)
Baseline CEA value: 1.98
LVI and PNI: absent
Surgical margins: clear
No lynch Syndrome or MSI
Primary surgery type: Laparascopic


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 37 guests