Port removed

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Snoop
Posts: 3
Joined: Sun Dec 17, 2017 3:24 pm
Location: Indiana

Port removed

Postby Snoop » Mon Aug 06, 2018 2:50 pm

Hello all! This is my first post but I’ve been a avid reader since my diagnosis.
What a wonderful board with wonderful & truly caring people. No one truly understands what we go through physically & mentally with this crap. This board has been a lifesaver for me. Thank you all.

I got ny port removed today. With my treatment over & my wonderful wife, family & friends celebrating me “ beating cancers ass” I feel I’m not celebrating as much as one should. I know how it acts, I know the statistics, my Dad died of cancer.

With the follow up blood test, CT scans & colonoscopys I know it’s not over in my mind. I am optimistic about my future.
Everyone said I “did great”

I guess the reason for my post is, some of you that have gone 4-5 years with no recurrence, is that always in the back of your mind? I’m one to put things behind me & move on. I really want to do that with cancer too, but I’m afraid that won’t be the case. I am a positive person but this seems to be total different.

Thanks again for this forum
Snoop
57yo male
Diagnosis 11-2016 stage 1
Diagnosed stage 3c 11-2017
Surgery, 4 rounds of chemo
30 days of radiation
4 rounds of chemo
Clear CT
Port removed today! 8-6-2018

User avatar
muskokamike
Posts: 207
Joined: Tue Feb 25, 2014 4:38 pm

Re: Port removed

Postby muskokamike » Mon Aug 06, 2018 6:35 pm

Hey Snoop

5 years this Halloween since dx and not a week goes by without thinking about recurrence. The slightest tweak or ache always triggers the thought. The slight raises in my CEA triggers the thoughts. I will say that I am way better than I was in the early stages of my journey when recurrence was a daily thought. I am a glass half empty person and I thought cancer would change that.... but I am still the same. I like to be vigilant and the way my mind set is, I know I will be.
53M Dx rc10/31/13
and a huge WTF?....then
CT scan, BONE scan
MRI/T3N0M0 1 suspicious node
5 wks chemo/rad
LAR open TME 2/26/14
temp ileo
0/24 nodes pCR - pathological
Mop up Folfox (8) Mar/28-Jul/4
Aug/14 clear CT scan
8/27/14 reversal
Feb/15 clear scope
July/15 clear CT scan
Feb/16 clear CT scan
Feb/17 clear CT scan
Feb/18 clear scope
Feb/18 clear CT scan
CEA levels 1.6 dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5
2.6 Sept 18
0-4 normal

boxhill
Posts: 118
Joined: Fri Apr 06, 2018 11:40 am

Re: Port removed

Postby boxhill » Mon Aug 06, 2018 7:40 pm

Hi, Snoop.

I am comparatively early in the process, but I find that people *seem* to think that it will be "over" when I finish chemo. I just reached the halfway point in my 12 cycles of FOLFOX, so I am a neophyte. :)

Or maybe they just recognize that finishing chemo is a milestone, and they are hoping that positive thinking will help and want to encourage me?

For me, since I currently have no known masses, when people ask me about the future I just say that we hope the chemo mops up any stray cells and beyond that we just have to wait and see.

I too have wondered how long one goes on waiting for the other shoe to drop, so to speak, thinking of oneself as "having cancer." Do people who have been NED for 5 years or more still think of themselves as "having cancer"?

I was thinking about how long, should I be lucky enough to not have a recurrence within a year, say, I would go without having my port removed?
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, KRAS G12D, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule

AppleTree
Posts: 224
Joined: Fri Mar 18, 2016 8:16 am

Re: Port removed

Postby AppleTree » Mon Aug 06, 2018 9:02 pm

Congrats on having your port removed. I have finished 12 rounds of Folfox and my oncologist wants me to keep my port for a year. That gave me a bit of a shock at first, but it has been a great port with no problems, so a year it is. But yes, in the back of my mind...I do worry that she thinks I will need it again? Fingers crossed that I don't!

I had a hard time celebrating the end of chemo. Just too tired! But it has been 3 months now and is starting to sink in.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper right lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July PET...CLEAR!

User avatar
horizon
Posts: 1475
Joined: Tue Apr 12, 2011 10:10 pm

Re: Port removed

Postby horizon » Mon Aug 06, 2018 9:40 pm

Snoop wrote:I got ny port removed today. With my treatment over & my wonderful wife, family & friends celebrating me “ beating cancers ass” I feel I’m not celebrating as much as one should. I know how it acts, I know the statistics, my Dad died of cancer.

With the follow up blood test, CT scans & colonoscopys I know it’s not over in my mind. I am optimistic about my future.
Everyone said I “did great”

I guess the reason for my post is, some of you that have gone 4-5 years with no recurrence, is that always in the back of your mind? I’m one to put things behind me & move on. I really want to do that with cancer too, but I’m afraid that won’t be the case. I am a positive person but this seems to be total different.


Congrats on getting that port out!

It is something that's still in the back of my mind but I try not to dwell on it. Worrying doesn't solve anything is what I tell myself. It's been easier to do that as I get more time since my treatment. It has made me appreciate things I took for granted.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 7 years NED). Is this real life?

Deb m
Posts: 431
Joined: Tue Jan 14, 2014 10:08 am

Re: Port removed

Postby Deb m » Tue Aug 07, 2018 8:42 am

My husband has been NED for almost 7 years now and I still freak out over every little illness, ache, pain he has. I don't think it will ever go away. Your correct in that this is "something totally different". My sister is a 30 year survivor of Hodgkin's lymphoma, had a bone marrow transplant, the whole thing. Still, after 30 years of being NED, she to freaks out over every little thing. I suppose it's just something we have to live with the rest of our lives.

Hang in there and I';m happy for your good news!

deb m

michelle c
Posts: 1861
Joined: Wed Dec 02, 2009 3:58 am

Re: Port removed

Postby michelle c » Tue Aug 07, 2018 9:13 am

Hi there,

Initially, it seemed to be the only thing I thought about....it was always there, the worry, what if it comes back? However, with time it did get better. I remember thinking, wow, I haven't thought about cancer for a few hours...but I think that that was quite a few months after I finished treatment. I started to feel a little less anxious after about one year post treatment but still always anxious around testing. I was diagnosed in May 2009 and I still think about it but not so much. It was a huge deal so I'll never forget. Don't be too hard on yourself and just know that the anxiety and constant thinking about it, will ease with time. At first, this is hard to believe, it seems that those dark thoughts will never go away but it will get better. Hang in there and best wishes.
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

User avatar
horizon
Posts: 1475
Joined: Tue Apr 12, 2011 10:10 pm

Re: Port removed

Postby horizon » Tue Aug 07, 2018 10:22 pm

michelle c wrote:Initially, it seemed to be the only thing I thought about....it was always there, the worry, what if it comes back? However, with time it did get better. I remember thinking, wow, I haven't thought about cancer for a few hours...but I think that that was quite a few months after I finished treatment. I started to feel a little less anxious after about one year post treatment but still always anxious around testing. I was diagnosed in May 2009 and I still think about it but not so much. It was a huge deal so I'll never forget. Don't be too hard on yourself and just know that the anxiety and constant thinking about it, will ease with time. At first, this is hard to believe, it seems that those dark thoughts will never go away but it will get better. Hang in there and best wishes.


I can relate to this so much.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 7 years NED). Is this real life?


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