Port Removal -- ASAP or wait for first scan?

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PainInTheAss
Posts: 673
Joined: Tue Jul 02, 2013 3:08 am

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

Postby PainInTheAss » Sat Sep 23, 2017 7:04 am

LaciK wrote: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.


My onc gave me the same speech, too. He wanted annual CTs, but I had read on here someone who went a year without a scan and the cancer was everywhere. I don't want to be that worst case scenario. I told him that it is a joke among cancer patients that we want to live long enough to get cancer from our scans. We came up with a compromise, and I get Pelvic MRIs and a chest CT every year and a full CT every year six months later, so alternating.

80% of recurrences are found the first two years, so if you are going to wait, that would be a good time to shoot for. I still have mine in. I'm just not thrilled with having another surgery, so each scan I tell myself I will take it out after the next clear scan... so... this October?
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

zx10guy
Posts: 233
Joined: Mon Jan 07, 2013 12:54 pm

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

Postby zx10guy » Sat Sep 23, 2017 7:22 am

I'll be that person. I had mine out 2 weeks after finishing chemo. On my 11th infusion, I met with my oncologist. I asked him when I can get my port out. He sat there for a minute and said if I wanted to, I can have it out right after finishing chemo. He said just wait at least 2 weeks to make sure there are no residual issues from chemo when doing the removal procedure. I had my CRC surgeon take it out; although he was very surprised about getting it out so early. My CRC surgeon also felt it should be there for at least a year. He had me contact my oncologist again to make sure; which my oncologist reconfirmed. So it was out 2 weeks after my 12th infusion.

Frankly, I was glad to get it out and was pushing to get it out. I hated my port. The area around my port was always tender and it felt uncomfortable. It was also a constant reminder about my life never being the same again. I also couldn't deal with the port flushes. It wasn't the getting stabbed part but the reaction I've developed to the saline flush. For some reason the "taste" and "smell" of the saline going in made me really nauseous. I never had a problem with saline injections before chemo. So it was another cancer gift. To not have to deal with wanting to hurl during the flushes is another bonus of having the port out.

In the end, my rationale is if I have a recurrence, I have bigger issues than worrying about having the blasted port put back in.

lovelife789
Posts: 161
Joined: Thu Aug 24, 2017 5:28 am

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

Postby lovelife789 » Sun Sep 24, 2017 12:27 am

Frankly, I was glad to get it out and was pushing to get it out. I hated my port. The area around my port was always tender and it felt uncomfortable. It was also a constant reminder about my life never being the same again. I also couldn't deal with the port flushes. It wasn't the getting stabbed part but the reaction I've developed to the saline flush. For some reason the "taste" and "smell" of the saline going in made me really nauseous. I never had a problem with saline injections before chemo. So it was another cancer gift. To not have to deal with wanting to hurl during the flushes is another bonus of having the port out.


I have the same struggle here. My port is really sticking out and every shirt I wear rubs against that part unless I cover it with a dressing. Winter is coming and I have a few knitted turtle neck I always wear and the port sticks out a lot. Though I have to admit it feels much better than when it was first put in, the port being there also made some activity impossible like some yoga positions, massage, some work out poses, etc. I'm still not done with my chemo, but I have already had a few rounds of saline flushes, I also have the same feeling. It "smells" and "tastes" weird, it made me wanna vomit. Recently the nurses found out they have a hard time drawing blood from the port, it takes a few tries, so may be there's one more reason for me to take it out.... :roll:
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild
3/17- 6/17 - 6 x FOLFOX + Erbitux
7/17 - 1st & 2nd Liver resec
9-12/17' - 13 x FOLFOX
1-6/18 - NED
6/18 - PET SCAN showed a 0.8mm lung nodule, VATs
8/18 - 4/19 - NED
5/19 - recurrence 1 x PALN, 1x common iliac
FOLFIRI + Avastin x 12 - complete response, SBRT
12/19-5/20 - NED
5/20 - recurrence in LNs, tiny liver spots x 2, W n W due to COVID
8/20 - LNs very slightly increased, liver stable, one new liver spot

CAGirl
Posts: 59
Joined: Fri Aug 25, 2017 4:55 pm

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

Postby CAGirl » Thu Oct 26, 2017 3:45 pm

Hi All,
Again -- really appreciate everyone's input.
Wanted to update that I did end up having it removed about a week after chemo-end -- and have NO regrets about it. Had to agree with the feeling that if it should recur, getting the port put back in will be the easiest of my battles.
It feels so good to not see the tube in my neck/vein and the bump in my chest.
I do feel more normal again, and I think it also impacts the kids, as well.
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-mo CT scan post chemo 11/17 slightly larger lung nod (incr. from 7mm to 8 or 9mm)
CT scan 3/18 - NED
clear CT scan 1/2019 NED

karaj
Posts: 49
Joined: Mon Aug 18, 2014 10:17 pm
Location: Boston
Contact:

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

Postby karaj » Thu Oct 26, 2017 5:28 pm

Congratulations! I'm glad it feels great and that you're happy with your decision!
36 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: FOLFIRI
8/16: NED
8/17: NED, currently under no treatment, scans every 3 months
http://www.karaincancerland.com


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