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Im finally getting my port out after 2 and a half years, what to expect, im nervous!

Tracie1981's picture
Tracie1981
Posts: 125
Joined: Mar 2010

Hi, I was diagnosed a few years ago with Hodgkins, it was early unfavorable because of the size of the mass. I still have some of the tumor left and am still doing PET scans,was every 3 months now its every 6 months. Im a little nervous about getting it out, but anyone who has had it done before any insight on what to expect would be appreciated Thank you!! and God Bless, Tracie

diazr1's picture
diazr1
Posts: 101
Joined: Mar 2012

The port just slides out when the Chemo Nurses do it . I thought it was a whole procedure but they just applied pressure while pulling it out

Tracie1981's picture
Tracie1981
Posts: 125
Joined: Mar 2010

They are cutting me open and taking it out. Im not allowed to have anything to eat or drink after midnight. Im under the impression it is a procedure that involves a dr and stitches, maybe your thinking of something else? Not sure, im just scared because when they did the surgery to put it in I was in pain for a few months after.

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hi Tracie,

I had my port removed in 1995 after ABVD for Hodgkins Disease. I don't recall any problems or pain from it. I was so thankful to have it out because my infant daughter always put her hand on it to push herself up. I'm hopeful you will have an uneventful smooth surgery as well.
Cathy

allmost60's picture
allmost60
Posts: 3182
Joined: Jul 2010

Hi Tracy,
I still have mine, so I can't help with your concerns, but wanted to tell you "good luck", and I'm happy for you that it's coming out. Mine has never bothered me a bit and I'm thinking I will just leave it in after my Rituxan is finished. My insurance will cover the monthly flush for the 5 years that the port is guaranteed. My thinking is that after 5 years... if I'm in remission, then I'll have it out. My Onc say's he's fine with me keeping it in (5 yrs). I just don't want to do surgery again to put a new one in, in case I should relapse. Take care and best wishes for no problems. Love...Sue
(FNHL-2-3A-6/10)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1252
Joined: May 2012

Tracie,

Removal of the port is a very minor surgery. The cath is almost always inserted into the superior vena cava, which leads straight into the heart. The disk and cath are removed, and there will be a "hollow" spot for some time, until it refills with tissue. My port area is numb on occasion from the cutting of the nerves, but no big deal. (Mine was removed about two years ago.)

Why is the doc removing it if you have "some of the tumor left?" Will this not require treatment?

My neighbor still has his port after two years of remission with NHL, but only because he never bothered to go have it removed, as the doc had suggested from him. He said he once went 5 months without a flush, and had no problems when it finally was flushed, for what that info is worth.

Tracie1981's picture
Tracie1981
Posts: 125
Joined: Mar 2010

Thank you so much for your replies, Max, the tumor I had was originally 18.8 cm X 17cm X 8, it was one of the biggest in the chest wall my dr has seen in Hodkins. It shrank quite a bit from the chemo but the residual/scar tissue from the tumor is still the size of a small banana and it will never go away. I just wont beable to run a marathon most likely, I can barely run half a mile without my chest bothering me. But its no biggie according to the dr, just regular scans and im just thankful to be here :) God Bless!

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