Port Removal -- ASAP or wait for first scan?

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CAGirl
Posts: 9
Joined: Fri Aug 25, 2017 4:55 pm

Port Removal -- ASAP or wait for first scan?

Postby CAGirl » Tue Sep 12, 2017 2:52 pm

Hey All,
I had a CT scan after my first 6 Folfox cycles. No changes in tiny liver and lung nodules. I'm getting my final (12th) infusion right now, and my onc wants to wait 3 more months, so it'll be six months since my last scan. Since I'm only 46, and have already had 2 scans, he wants to limit the radiation I'll be getting (for years to come).

I know this is a personal decision -- but who had their port taken out right after they finished full cycles of Folfox versus waiting for 6-month scan? My onc says he will support if I want to wait but usually says take it out ASAP, since he's assuming all is good.

(I want it OUT, though it's been my friend.)
Diagnosed 2/2017, age 45, 2 kids: 6 yrs & 3 yrs
History of Crohn's disease - diag in 1997; in remission w/low dose of anti-inflammatory, thus no colonoscopy in over 10 years
Stage 3C - T3N2b
8/64 lymph nodes; clear margins surgery 3/17
Started 12 cycles of Folfox 4/17, expecting to be done mid-Sept!

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CRguy
Posts: 9281
Joined: Sun Feb 10, 2008 6:00 pm

Re: Port Removal -- ASAP or wait for first scan?

Postby CRguy » Tue Sep 12, 2017 8:58 pm

JMO ...
Stage IIIC ..... personally I would keep it for a while

"since he's assuming all is good." and we all hope he's correct BUTT that should be based on medical tests and imaging facts not assumptions
If he's wrong WHO has to get another port put in ..... him ?????
Ok now I'm getting gnarly :twisted: WHEN a doctor says to me "I wouldn't worry about .... OR IF it were me ..... "
I say It is NOT you AND if it were YOU ..... I wouldn't worry either !!!!! :twisted: ... and Yes in fact I have said exactly that,
the second time around after my lung met was missed on a CT

CT radiation : yes it is a real risk BUTT again the newer CTs are way lower exposure than when all the "warnings" first started circulating back in my day (10 years ago )
I once told my Onc ( when he balked at keeping 3 month scans versus 6 month scans for a year )
" I would rather die from too much radiation than another missed cancer met because we didn't do the scan.
My life, so it is my choice. "


Please read the linked topic in my signature for all the details BUTT
every situation can be different, my port was ZERO problem, flushed when blood tests were done and Onc said remove whenever I was ready
so I wasn't ready until nearly 3 years later ...

YMMV
Certainly your choice BUTT just get all the facts and be comfortable with a fully informed decision.
I was an aggressive advocate for myself and am still here 10 years later Stage IV
again ....JMO

Cheers and best wishes on the Journey !
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

nomoretacos
Posts: 48
Joined: Sun Mar 27, 2016 5:57 pm

Re: Port Removal -- ASAP or wait for first scan?

Postby nomoretacos » Tue Sep 12, 2017 9:17 pm

Hello fellow IIIC

I wanted to keep my port in for at least a year or two after chemo, but my Onc was insistent on it coming out and there was no arguing with her. My post chemo scan also showed two spots (one lung, one liver) whereas my pre chemo scan was clear of any spots. She wasn't concerned about the spots saying she was 99% sure it wasn't cancer. Well she was right, i'm nearly one year post chemo and scan results yesterday was a completely clear scan. Life is great without a port and not having to go in every few weeks/months to get it flushed. If you want it out then get it out!! As long as you know you may need to get it again if things go south. Goodluck
03/16 Dx Stage IIIC, sigmoid resection surgery,T3 N2b M0, 7/20 nodes, 4 tumor deposits, CEA 3.7, age 31
04-10/16 Folfox with delays and reductions
10/16 Post chemo CT scan shows two non specific spots (one liver, one lung)
11/16 Port removed
12/16 CEA 0.9
09/17 NED

karaj
Posts: 45
Joined: Mon Aug 18, 2014 10:17 pm
Location: Boston
Contact:

Re: Port Removal -- ASAP or wait for first scan?

Postby karaj » Tue Sep 12, 2017 10:48 pm

Congratulations on your last infusion! I had my port removed 3 months after I finished chemo. Even though I had a recurrence 6 months later and had to have a port put in again, I don't regret having it taken out. I hate the thing and I know that having it removed helped me to feel like myself again. I'd have my current one removed tomorrow if I could!

I don't think you can make a bad decision in this case. Best of luck!

Kara
35 y/o female, dx at 32
8/14 dx Stage IIIC, 10/30 lymph nodes
8/14-9/14: sigmoidoscopy, fertility preservation, port-a-cath
9/14 - 3/15: FOLFOX (allergic to oxaliplatin, underwent desensitization)
4/15: NED
1/16: dx Stage IV, recurrence in three lymph nodes behind abdomen
2/16: started FOLFIRI
8/16: NED
8/17: NED, staying off chemo until next recurrence
http://www.karaincancerland.com

CAGirl
Posts: 9
Joined: Fri Aug 25, 2017 4:55 pm

Re: Port Removal -- ASAP or wait for first scan?

Postby CAGirl » Wed Sep 13, 2017 12:02 pm

Most excellent and thoughtful responses. Thank you, Guys.

As I figured, there'd be support for both sides. And all good points, at that.

Kara, you're right, either way, the decision will be fine. I did appreciate that you didn't regret having to get it put back in, after the pleasure of being without for six months.
Diagnosed 2/2017, age 45, 2 kids: 6 yrs & 3 yrs
History of Crohn's disease - diag in 1997; in remission w/low dose of anti-inflammatory, thus no colonoscopy in over 10 years
Stage 3C - T3N2b
8/64 lymph nodes; clear margins surgery 3/17
Started 12 cycles of Folfox 4/17, expecting to be done mid-Sept!

Lee
Posts: 5248
Joined: Sun Apr 16, 2006 4:09 pm

Re: Port Removal -- ASAP or wait for first scan?

Postby Lee » Wed Sep 13, 2017 1:50 pm

As a IIIC, I had my port in for 2 years.

I know of a person from here who was also a stage III when she had her port removed soon after finishing chemo. Unfortunately she progressed to a stage IV. They put a new port back in her, butt due to scar tissue/adhesion, it would not work correctly. It had to be taken out and a new one put in the other side of her body. In hind sight, she regretted getting that 1st port out.

I can feel the scar tissue from my port. My advice, keep it in for at least a year.

Good luck,

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!

Joannerogers
Posts: 249
Joined: Tue Jun 16, 2015 4:50 pm

Re: Port Removal -- ASAP or wait for first scan?

Postby Joannerogers » Wed Sep 13, 2017 4:07 pm

I've had mine for almost three years, finished chemo almost 2 years ago. I was stage 4 though so I don't know if that makes a difference but my onc says don't be in a hurry so I'm not. Im going by Murphy's Law....if I have it , I won't need it! If I don't have it, I will need it! I would just as soon not ever need it again.
53yo married 27 years, 2 children, 24 and 25
Diagnosed april 23,2015 rectosigmoid
Starting CEA 1845
Port placement and liver bx April 27
Folfox started april 29
Avastin added on May 6
Stage IV crc with mets to 50% of liver

10/13/15 dc'd transfusion #12...toxic
Pet/ct scan on 11/3/15
20% liver resected all margins clear 11/30/15
8/18/15 cea 21.
9/15/15 cea 13.9
10/13/15 cea 14.4
1/22/2016 cea 2.5
LAR 02/15/16 all clear

thubler
Posts: 26
Joined: Tue Sep 27, 2016 9:22 am
Facebook Username: Ted Hubler

Re: Port Removal -- ASAP or wait for first scan?

Postby thubler » Wed Sep 13, 2017 7:27 pm

Hello. I finished up chemo 11/16. I have had two CT scans and one PET due to an enlarged lymph node. Everything has been stable. I have my next scan mid October and if everything stays the same my oncologist wants to have my port removed. Im torn on if I want it out yet or not. Most of the time I forget I have it except Ive lost weight and it really pops out now and can be seen when Im wearing a t-shirt. Still haven't decided on what Im going to do either.
III b CC diagnosed at 35 years old.
two primary tumors on ascending/transverse stage 1 and stage 3.
Lynch Positive
Colon resection May 2016.
2/41 lymph nodes positive.
Started Chemo June 2016 Folfox
Finished Chemo November 20, 2016
Clear Endoscopy and Colonoscopy 12/6/16
CT scan 02/07/17 enlarged mesenteric lymph node.
PET scan 02/15/17 Showed minimal uptake in two nodes, little to no metabolic activity. Too small to biopsy.
Stable CT scan 06/05/17
Stable CT scan 10/16/17
Port removed 11/03/17

LaciK
Posts: 61
Joined: Mon Oct 12, 2015 2:10 pm

Re: Port Removal -- ASAP or wait for first scan?

Postby LaciK » Fri Sep 15, 2017 4:37 am

I want to keep my port for as long as I can. I am a difficult blood draw and the IV contrast for the CT scans is even more difficult due to the larger needle. For me it's well worth the hassle of the port flushes.

My oncologist gave me the same speech about scans and radiation but I'd rather be proactive and catch cancer early than worry about what could happen from having a CT scan or 2 or 3. I switched oncologists and I have 1 CT scan per year for three years. This gives me piece of mind.

Advocate for yourself and trust your gut. The doctor can lay out your options but it's your body and your choice.
DX 9/23/15 rc (age 50)
CT & EUS revealed T3N1 Stage 3b
Chemo/Radiation Oct/Nov 2015
LAR 1/15/16 w/temp ilieostomy
Xelox 3/17/16 - 2 rounds then paused for ilieostomy reversal 4/22/16
& to Clear up C. Diff infection
Restart Xelox 5/19/16 - Final infusion 7/21/16
Finish Xelox (oral Xeloda) 8/3/16
8/17/16 CMP & CBC normal; CEA Zero!
9/26/16 Colonoscopy clear
10/5/16 CT clear

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horizon
Posts: 1424
Joined: Tue Apr 12, 2011 10:10 pm

Re: Port Removal -- ASAP or wait for first scan?

Postby horizon » Sun Sep 17, 2017 5:59 pm

Stage 3 and they wanted me to keep mine in. It was well over a year after I finished chemo before it came out.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 6 years NED). Is this real life?

Basil
Posts: 206
Joined: Thu Mar 16, 2017 12:33 pm

Re: Port Removal -- ASAP or wait for first scan?

Postby Basil » Sun Sep 17, 2017 6:32 pm

My onc at MDA has his patients keep it a year. I found this a tad disturbing because I'd been hearing for weeks that I was all good and "low risk" for recurrence.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED

User avatar
horizon
Posts: 1424
Joined: Tue Apr 12, 2011 10:10 pm

Re: Port Removal -- ASAP or wait for first scan?

Postby horizon » Mon Sep 18, 2017 7:54 am

Basil wrote:My onc at MDA has his patients keep it a year. I found this a tad disturbing because I'd been hearing for weeks that I was all good and "low risk" for recurrence.


Yeah, I expected it was coming out in a few weeks and when they told me how long they wanted me to keep it in I almost fell out of the chair. I did love having it for CT scans and blood draws though. It was an annoyance but I don't regret keeping it for longer to be certain I didn't need it again.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 6 years NED). Is this real life?

AlmostAmazing
Posts: 6
Joined: Mon Sep 18, 2017 8:44 am
Location: Western NY

Re: Port Removal -- ASAP or wait for first scan?

Postby AlmostAmazing » Mon Sep 18, 2017 9:16 am

Hi, as others have said, it is a personal decision.

My first port I just wanted gone when I was done with chemo. I wanted to return to or create my new normal and that was an unwanted reminder.

My second port, (new primary cancer diagnosis) I wanted to keep for a year post chemo because of the likelihood of reoccurrence in the first year. I was getting ready to schedule the port removal when I received the news that the port would be with me a few more years.

My doctor was fine with my decision (we discussed pros and cons), however if it was solely his decision, it would have been gone when chemo was done. I was glad I kept it. I hate being poked and prodded.

AppleTree
Posts: 128
Joined: Fri Mar 18, 2016 8:16 am

Re: Port Removal -- ASAP or wait for first scan?

Postby AppleTree » Wed Sep 20, 2017 7:25 pm

The surgeon who put in my power port told me that it would be a non issue if I wanted to keep it a few years after chemo...just have it regularly flushed. I have very bad veins so I appreciate my port.

I had my surgery June 2016. Blood work in January, April and June (2017) was good. CT scans of pelvic area in February and April were good. Colonoscopy in June was good too. But then my oncologist wanted to make sure my lungs were good, 1 year out (thankfully!). Nope...a small met. So, I had the surgery and now the port/chemo and figure I will keep the port 18 months after finishing chemo...just to be on the safe side.

Right now I am on Folfox and no sign of cancer in sight. Just the same, oncologist mentioned to me another CT scan in October or November and then every 6 months. Makes me a bit nervous...if she keeps ordering scans maybe she has more reason to believe it will come back? I want a few good scans under my belt before I give up my port!
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
March 14 - April 16 - 25 sessions
Tumor shrunk just over 50% Lymph nodes 0/13
Operation to remove rectum with temp Ileo June 17
Reversal July 20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
June 16, MRI shadow in lung
Pet scan - 6.6mm Met in Upper right lobe
July 30 VAT surgery Mass General/Boston
August 24 port installed
August 30 Folfox

Tim UK
Posts: 60
Joined: Fri Jun 12, 2015 1:05 am

Re: Port Removal -- ASAP or wait for first scan?

Postby Tim UK » Fri Sep 22, 2017 5:23 am

Hi
I have had mine for nearly 3 years. Started as Stage III then progressed early on to IV. It settled down after a couple of months, now feels like part of me, makes the whole extraction / infusion process painless and stress free. I would hang on to it for a while longer.
Good luck,
Tim
https://www.youtube.com/watch?v=qoQbY4A5RNA
05/15 L hemi-colectomy - robotic, laparoscopic
05/15 Dx st 3 T4N2M0 @43
kids: 11,7
BRAFm mucinous - KRASw
06/15 2 liver mets
06/15 CEA 9, CA19-9 400+
06/15 - 09/15 6 x FOLFOXIRI+Avastin
09/15 markers 4/50
10/15 drain-site met
11/15 CRS+HIPEC
1-8/16 BRAF therapy (dabrafenib, panitumumab, trametinib)
CEA;CA19-9: 1/16 16;650 | 2/16 3;690 | 3/16 1;36 | 4/16 2;46 | 5/16 1;29 | 6/16 1;42 | 7/16 2;44 | 8/16 3;72 and 4;135
8/16 progression (PET)
10/16 Trial: NCT02650713


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