Removal of port, please provide information
 

Ladies,

Please let me know your input on removing port.

The onc says remove it since my herceptin treatment is done. Also there could be an infection. My nurse says to leave it in for a year.

I'm at crossroads with this. I think that ports last a long time, if you flush it every 3-4 weeks. I'm also scared of needing it again soon- I know this is negative thinking!

On the other hand going to the chemo lounge and getting it flush so often is hard. I live far from the site. I would also use it every three months to get checked so my veins would last a little longer.

I know that some of you have had it removed. did you have to think twice about doing this?

I thought that I could leave it in for a year and then take it out.

Or I was going to take it out at the same time as I place the implant so I avoid surgery a second time.

Please let me know your insights, I do value your thoughts.

XOXO

MCS ( maria)

Hi Maria!

I have the same question! I finish herceptin the end of June and have the same decision to make. Isn't it wonderful to have that decision to make? ma

I've already made that decision for me, so thought I'd share what it is. I don't finish Herceptin until September, but I plan to get it removed after my last Herceptin.

It's a way for me to feel THROUGH with treatment (a good thing (*smile*)). If I need it again, well, I'll have another put in. But I'm not expecting to need it again. I plan to live my life as if bc will never recur. If it does, I'll handle that then.

Now....I may change my mind if I have to get frequent follow-up blood tests from my onc office (since that's the only place that can USE the port). But I don't think follow-ups will be that frequent for me, so doubt if this will be an issues.

Good luck with your decision too.

Hi Maria,
Not to muddy the waters,but...
I finished AC/Taxol and 1 yr Herceptin in July '06. My Onc strongly advised me to keep my port for at least one more year. I am so used to it now that I rarely think about it and in 2 + years have never had a problem (knock on wood!).

Warmly,Marcia

Forgot to add...since I had nodes removed on both sides its probably prudent for me to continue using the port for blood draws, scans etc.

Marcia

It is good to be in this position. I do have a few nodes removed and the surgeon okd blood draws from either arm ok.


I just love my port. It's so wonderful to sit there with just a cream and nothing hurts. I have these veins that move around so they are hard to pick :)

I don't know. Thank you for your votes on the matter.

XOXOX

MCS ( maria)

I still have my port. I had it put in April 2005, right after MRM.


I finished my last Herceptin this August 28, 2006.

I have no plans on having it removed UNLESS it gives me a problem. It is my security blanket. I have it flushed every 6 weeks.

Reply to port removal
 

My husband has stage IV HER2+ BC and his last treatment will be 4/12/07. He plans on leaving it in until the Herceptin is finished and a little beyond. I think it matters what stage you are in, how you responded to treatment and your chance of reoccurence. Keeping a positive attitude helps, but he was so ill that leaving it in a little while longer until he gains more confidence is our reality. Great work and keep us posted on your recovery>>lol>>SMILE>>Waiting For A Miracle>>Marie G

Had my port in then out then in again....
 

HI- just wanted to voice my experience - My port got a bad infection while I was in Hercepting treatment - had it pulled, healed and then had a new one placed during an LAVH procedure. I am keeping mine as a safeguard, I don't like having that hard place in my chest but I like less being cut open again so soon darn it! I will keep it for a year and then see how I feel. Go with your what makes you comfortable - the insertion isn't that big a deal if it is done at a good hospital. When they put my second one in they cleaned up quite a bit of scar tissue from the first. Have a good Easter!

Hi Maria,

Had mine out end of Feb, 3 months after completing H. The Onc thought it odd that I waited that long. My skin is still hard and raised where the cath and port were. Guess it will take awhile. I was never all that fond of my port because I don't have experience of doing chemo without port.

You could also not get it flushed and have it removed with implant surgery. I guess if you don't keep up with flushing schedule it becomes unusable after 2 months. Should you need it 6 months from now, they can pull the old and put in the new. If you don't need the port it can just sit there dormant without flushing until you do implant surgery. BB

I had mine removed one week after my last Herceptin treatment. The onc told me before that I could have it removed, I was done, and yet when I saw the nurse practitioner, she acted shocked I was going to take it out so quickly. It was a little disconcerting to see her reaction but I wanted to remove it as soon as possible. I just thought if I had to start chemo over again, then I'd have another port put in. It was great to have it when I needed it but it was time for it to go. It was January 2005 that it was removed and to this point I remain NED.

Bonnie

Hi Bev,

My understanding was that flushing the port prevented blood clots. You either have to flush it every 2 months or remove it. You can't just leave it dormant.

- Anna

Hi All,

I'm stage I, no Herceptin, diagnosed in 2002 before it was commonly available. I kept my port, although admittedly if I lived in a warmer climate where I would be wearing the clothes more often that usually expose it I might not.

HER2's and triple negatives have more reason to need one.

Just FYI, I get my port flushed every 4 months at the same time I have blood draws as part of the Early Detection for Ovarian Cancer trial and the Early Detection for Breast Cancer trial. It has never, ever been a problem.

Also, don't assume that keeping port means it can be used for general lab draws. A lab draw and flush is spendier for one thing than a draw from the veins, so your insurance may not continue to pay for the port draw -- but also, the folks drawing general labs often are not trained or qualified for port draws so you may end up disappointed and having a draw from the vein instead.

Alaska Angel

Hi MCS,


I had my port removed 6 months after completing H. I figured to be done with it. If I should ever need a new one, Oh Well - I will cross that bridge if I need to.
When the surgeon removed it, it was a relief! Although my port served me well, I was glad to get rid of it. Perhaps you may want to reconsider removing it if you are going to see your onc every 3 months for the blood draws... Wait till you get to the every six month check-ups, and then get it out. It kind of does provide a "security blanket" feeling. And it is more practical to leave it in indefinately... There must be a place nearer to you for flushing- it's just flushing and practically any onc office can do it. Save the 3rd month for your reg onc...

Take good care,

MTS (the other Maria)

I want to get mine removed as soon as possible. ( I finish Herceptin in Dec.) I have had blod clots twice already, and if I will need it again I am sure there will be a super port that is even better than what I have now. The nurses don't like my port either, it's seems to lay on it's side to much and is inplanted really deep. After I got my port I asked me surgeon about riding roller coasters and hand gliding with it, he said go ahead and try it, but I don't know if I would feel that comfortable with a harness with all that force hitting my port area. I still might ride this summer with this port in. I don't now if I can go a whole summer with no Cedar Point thrill ride.

I just finished with my Herceptin today and I am having my port removed on Thursday. I just feel having it removed makes things complete, now I can start living pre bc. That's just my thought.

I saw my onc for the 1st time since my last herceptin and she said my yr of herceptin is up. To set-up a date right away & have my port pulled. (Wow..lets waste no time!) But I think my onc & surgeon were kind of in a hurry for me to pull mine because of the enlarged lymph nodes in that left axilla where the port runs through there. (Process of elimation to see if that is the cause of the pain I've had under my arm and those enlarged nodes.) I've complained of constant pain in axilla.

I felt a bit un-comfortable being told to have it pulled ASAP. I wasn't ready for that. Many keep theirs for a while just in case. But she wants mine out now and said there is no reason to keep it. So I guess I will be getting mine out right away rather I want to or not. I just assumed until I got to the 2 yr mark they might want to keep it in especially with my bc history. Positive nodes & all...obviously not. I have NO veins at all to use lab work or anything...so this will be interesting. (It would be nice if the pain in my axilla left though.) :)

Chelee

I just had my port removed. I had my last Herceptin treatment in May '06. My surgeon told me I needed to wait one year after Herceptin. I was really bad about getting it flushed. I had it done every 4 to 5 months, but I never had a problem.

Question re Port
 

Does everyone who gets Herceptin get a port?

Probably not. But considering that how many times you would get stuck for an IV during a year of Herceptin treatment, I think you can see why it's desirable for most of us.

I do not have a port and am receiving Herceptin every 3 weeks for a year. My onc has a lab in his office where they check blood counts every visit, and I get finger sticks to be able to save my veins for the Herceptin line. When he wants blood chemistry (every 6 weeks) I make a separate appointment a week before my infusion so they can use the vein in my arm. Since I work near my onc, it is no big deal to do this.

Herceptin and the solvents it is dissolved in, unlike many of the chemos, is not dangerous to the tissue surrounding the veins if somehow the line accidentally gets yanked out of the vein during the treatment. If you have good veins and don't mind the sticks, the port isn't a necessity for this treatment.

Hopeful

Revisit the Port Removal Question
 

I am bumping this thread up, as I am about to finish my year of Herceptin. My onc has not said anything about removing my port, and I am inclined to wait, I think at least six months. Wondering if anyone has some new thoughts or comments...thanks
Rebecca

When yo finish your Herceptin it is usually up to you if you want it removed right away or wait. My oncologist said that I could keep the port for up to a year and just get it flushed once a month. I opted to have it removed. Unfortunately, I developed mets and had to have another port put in. But, if I had to do it all over again, I'd have the port removed right away as I did.

My port was uncomfortable so I had it removed after I finished Herceptin. The doctor was hesitant to do so, then he checked over my chart and said that since it was unlikely for the cancer to reoccur to go ahead and remove it. If it would not have been so irritating, I would have left it a bit longer. Perhaps I was allergic to the rubber line?
BTW. I wish I would have not had the meds they gave me to put me into twilight sleep. I was dizzy and nauseous for a week afterwards. Just some Ativan or Halcion would have been enough. Some seem to have them removed with just the local.

Kate, it looks like you recurred mets within 3 months - so the port was only out for a short time, right? That's what I worry about. More of the same uncertainty.

Rebecca

Rebecca, I understand your concern...I had the same ones when it was time to remove mine. I'm Stage IIIA, her2/neu, 3+++, er & pr positive, 5 of 16 positive nodes, Richardson scale 9 of 9. I wasn't able to have rads either which worried me. But my current onc and my 2nd opinion onc up at City of Hope both told me to have it removed when I finished my herceptin. I wanted to leave it in at least till I hit the two yr mark. But they both insisted I get it removed.

I can tell you *now* I am glad I did it. (Its been out for almost 9 months now and so far NED.) (Knock on wood) There is no way to know when or *if* you will recur. So I am betting on I won't. :) Positive thinking. You said your onc hasn't brought it up....next time get his/her opinion? That might help you decide. Good luck to you.

Chelee

Rebecca, when I knew I wouldn't be continuing Herceptin, I ASKED my onc if I could get my port out now. She didn't bring up the subject, but I couldn't see having my port only for every-3-month blood tests (and having to come in and get it flushed monthly). She thought about it and agreed, and I had it removed.

If I have a recurrance and have to get another, then so be it. But for now, I'm cancer-free and having NO port just reminds me of this every day.

Anyway, that was my thinking. Good luck.

Port Removal
 

My experience, went thru 4 months of dose dense chemo wo port. When Herceptin became available to me, I had to get port.

Although I never had any problems with it, one month after my last Herceptin treatment (was on Herceptin for 2 years) I had it out.

And I'm glad I did. If I need it again, I'll have it put back in but after nearly 3 years of feeling like a patient, I needed the reminder gona asap.

Just me, you have to decide what you're comfortable with.

Either way, Godspeed and Good Luck to You!

Ginagce

I feel my oncologist said it best when she suggested I have my port removed after three years in Sept. 2006: "There's no good time to remove a port."

When she had suggested I remove it, I asked her whether it was okay now, because I had seven positive nodes, and that was her answer (even though I knew she never suggested removing it before then because of the positive nodes).

My onc has a lot of wisdom and always says the right thing. After all, we don't have a crystal ball to help us make these decisions.

I removed the port and five months later the cancer showed up in my lung. "There's no good time ..."

I had my port flushed every 6 weeks.

I will be finishing my herceptin in December and have decided to keep my port in for awhile maybe 6 months. My onc suggests removing it after the last herceptin treatment. I have a cyst on my brain that is being watched MRI every three months and am having a PET scan end of December for lump in my neck that does not show up on CT scan, so I am reluctant to have it removed with these issues. I just look at the removal as one more procedure I don't want to deal with and it is a safety net if the cancer comes back. Most patients recurr within 1 year after treatment. So I am keeping mine for a while.

I still have my port and use it often as I see my onc every two or three months. It was never suggested to me to have it removed and it doesn't bother me. I am on and off herceptin (looking to go back on now as my tumor markers are increasing) so think it's best to just keep it for now. If I am NED for a couple more years I'll get it out.

Cathy

Thanks
 

Thanks, everyone, for sharing your thoughts and experiences. I guess I'm going to go with my gut, as I have all along, and keep it for a while. It doesn't bother me, or make me feel more like a patient, and the thought of another "procedure" makes me sick to my stomach. Only 2 more herceptin treatments to go! and that makes me very happy (I've been going weekly for a year). And if I have to get the port flushed once a month, it's a good excuse to see my onc. I'm pretty sure I'll be in withdrawal after seeing him weekly for so long.

Rebecca