Treatment complete - leave port in - or take out? (m)...

greenacres · 12-28-2010, 06:54 AM

Good morning everyone! My treatment is complete as of 12/1. My Dr. says it's my choice to have my port removed. I then went out to the infusion room for my last Herceptin and the nurse suggested I might want to consider leaving it in for one year "just in case". I don't know.....I really want it out but on the other hand I am afraid of a recurrence. I was Stage 1, Grade 3, Her 2+++. I had a bilateral mammo and breast MRI and both came out clean. However, I did have a 3mm nodule in R breast, probably benign they say and I do have a lump I can feel in my cancer breast right near underarm which they say is most likely scar tissue and wasn't seen on neither exam, but told to just keep an eye on it.

What is everyone elses experience? Take it out or leave it in for a while? We are leaving on our trip to Disney World on 1/22 (delayed from last year because of cancer) and I just don't want any complications and then I can also start cutting back on my Coumadin (only taking because of the port/had a blood clot last year). I want to be done with all of this!

Thanks - Sandra

Mary L · 12-28-2010, 07:43 AM

Hi Sandra, I kept mine in to make sure I didn't have a recurrence as I had when I had to stop the heceptin as my ejection fraction would go down. I had mine in for almost 3 years after I stopped Herceptin. My Dr. wanted me to get it out but it was my "crutch". I had to get it flushed every 3 weeks. I'm glad it is out. Your Dr. will tell you when it should come out and you will be able to make the choice. Glad you finished your treatment. Good Job!!! Mary L

PinkGirl · 12-28-2010, 09:15 AM

Had mine removed within days of my last treatment ... my thinking
is that it's no big deal to get another one put in if ever needed.

fauxgypsy · 12-28-2010, 09:32 AM

I have had mine in for almost four years. I was going to get mine out over Christmas but my tumor markers were up and he wants me to wait. I was either stage II or IV when I was diagnosed so there is a difference. Since you were at such an early stage, your tratment was very agressive, and your doctor (and he would tell you if he wasn't) is ok with it, I would go ahead.

greenacres · 12-28-2010, 10:32 AM

Thank you everyone! I've made my decision. I'm scheduled to have my port removed on 1/6/2011 at 1:45. They've instructed me to discontinue my Coumadin on Thursday (7 days). I then continue after my port is removed, then taper off until I no longer need it. YAY! I can't wait! Thank you for all your suggestions and comments, I appreciate the time you took to write back. Sandra

tricia keegan · 12-28-2010, 12:47 PM

Sandra- I had mine removed right after my last herceptin as felt to keep it in, was tempting fate and just holding me back from going forward after cancer (if you know what I mean)...
I had no regrets thankfully and hopefully nor will you!

caya · 12-28-2010, 02:47 PM

Hi Sandra,

Good choice!! I had my last Herceptin on June 7, 2008, and my port came out at the end of August, 2008.

Big congrats to you!!

all the best
caya

Estelle · 12-28-2010, 03:30 PM

Hi Sandra,
I finished herceptin in July and had mine taken out. I figured if I needed it again I would get it back. HOWEVER, I am now considering a clinical trial for a vaccine which is designed for persons NED -- to rev up the immune system to fight C at the cellular level.
Because of the amount of blood, and the process for administering the vaccine, I would probably get the port put back in for 6 months. Soo, if you are thinking at all along these terms, investigate the clinical trials before taking out your port.

Just a thought.
Estelle

1rarebird · 12-28-2010, 07:09 PM

My onc's advice was leave it in for 2 years, despite my early stage and aggressive treatment. I think he uses the "just in case" line of reasoning at times when advising me. So I have left it in this far (since July this year). His procedure is to flush it every 8 weeks so that is not a burdensome as Mary L's every 3 week regimen.

But here's a kicker that may change all of this for me. Today I got a notice of denial of coverage from the insurance company for the last time I had the port flushed. I don't know why yet and am confused since they paid for the first 3 flushings post Herceptin. And of course they paid for the year's worth of flushes while I was receiving the chemo therapy and Herceptin. I plan to call about this tomorrow but wonder what might be a possible reason for this denial now. (Premiums always paid on time.)

The port is a necessary medical device prescribed by the doctor and its routine maintenance to prevent clotting seems to me should be part of system.

bird

3twins · 12-28-2010, 10:05 PM

Sandra,
Congratulations on getting through Chemo and with your decision to take the port out.
I hated my port and couldn't wait to have it taken out. I often experienced a 'bite' to it. I finished Chemo on Oct. 21 and had 2 more weeks of herceptin. Scheduled surgery to have my TE replaced with the permanent breast implants and have the port removed at the same time.
I'm happy to say I had this surgery yesterday and while I'm in a little pain from the incisions, I am thrilled that port is OUT!
Best wishes and I'll be thinking of you on Jan. 6.
3twins

Mary L · 12-29-2010, 10:40 AM

I am very glad I finally let them take it out. I don't miss it at all. Like I said before, it was my crutch. Mary L

'lizbeth · 01-03-2011, 10:11 AM

Yeah! I'm glad you are having it taken out. Mine was bothered by the seatbelt rubbing on it. If I had known how easy it was to have it taken out - I would have done it sooner. The longer you have it in, the more sheath that builds around it, the harder to remove it.

I found the removal a piece of cake.