Port to stay in

Linda2 · 01-04-2007, 05:45 PM

Hi everyone. I am new to this site and am amazed at how many of us with the HER2 gene are out there. I have found this site to be very helpful in my days of panic.

I just finished my yearly Herceptin and figured that is was time to have the port taken out. My onc wishes me to keep it in for a year or 2 longer; just get it flushed every 6 weeks. She tells me it is easier to keep it in than to have it taken out and then put back in.

Is she trying to tell me that there is a good chance the cancer will come back? My tumor markers were at 15 after chemo and now they have risen to 30. Does this mean that the cancer is starting to grow again?

God bless everyone. Thanks in advance for any opinions on this.

Barbara2 · 01-04-2007, 07:39 PM

My onc told me the same thing after I finished my "late" herceptin in June. When I asked if the port should be taken out, he said, "Why don't you hang on to it for a while?" It made me think he felt there was a good chance it might come back, so why not keep it. He's pretty good at talking both ways, though, so he quickly added, "If you want to take it out, go ahead. It can always be put back in if needed."

I kept the port and am now getting the montly (or longer) flushes. My first port never did feel right, but this one is more comfortable, so I guess I don't mind keeping it. Not too crazy about having to continue the coumadin, too, but guess there's not a choice regarding that.

I don't know about your marker numbers. Did you have the tumor markers taken during the year of herceptin at all, to know how the markers were during that time? Maybe after a time away from herceptin, they will drop a little. I'd ask your onc what she thinks about the marker numbers.

Linda2 · 01-04-2007, 08:49 PM

Thanks Barbara, I will ask about the markers. They did not take tumor markers during my Herceptin.

I know the oncs kind of double talk. My onc won't come out and say there is a good chance it will come back, but I can tell by some of her remarks that she is expecting it to.

Soccermom · 01-04-2007, 09:34 PM

Dear Linda2,
I completed my one year of weekly Herceptin July 18th,2006.My Onc advised me to keep my port in for 6mo-1 year. I was taken aback, and felt the same way as you do now.However, its been 6 mo. and I get it flushed every 6 weeks and to tell you the truth I sometimes forget its there! They forgot to schedule my last flush ahead of time and in a panic I called and they got me in Dec22nd ,just at my six week mark...shessshh!
Hope this makes you feel abit more comfortable with keeping it for awhile!

Marcia

mindersue · 01-04-2007, 10:25 PM

Hello,

I just finished my 1 year of Herceptin yesterday. My onc had said previously that before I have my port removed he wanted to "see where the dust settles" on my blood counts (they're low) and the tests I'm having done. I have to go in monthly for blood test. Otherwise I'm glad I learned here that it has to be flushed every 6 weeks. : ) Yep, I was thinking the same things you all were...does he think I may be needing it again soon?

Take care.
Mindy

Linda2 · 01-05-2007, 09:45 AM

I'm glad to hear that I am not the only one. The port doesn't bother me at all. It's great when they need to draw blood, because there is no pain. Thanks for all your responses. I feel much better.

God bless you all.

KellyA · 01-05-2007, 12:39 PM

I may be clueless and wrong, so please please correct me if I am, but I am a stage 2b with 3 positive lymph nodes, vascular invasion, and er/pr- as well as Her2 +, and I have been given an 80+% chance of beating this disease. As much as the other 20% scares me to death (and its something that I deal with alot), the fact of the matter is that I have a very good chance of winning this fight. My onc. is the same way about ports, and prefers to leave them in for a bit, just to make sure- and I am going to leave it in for a little while after my Herceptin is finished, but then it is "Adios! Hope to never see you again!"

Everybody in this thread has the same or better chances. My new motto is, "live like you won, not like you lost". I'll deal with setbacks as they come, and if that means putting another port in down the road, then I will. Hopefully that day will never come. This site has given me so much more optimism about my disease and thanks to you all, I will never look at life the same. :-)

Love, Kelly

Stephanie B. · 01-05-2007, 12:51 PM

I have had my port in since my initial surgery in Dec. 2004. When I finished my 1st round of Herceptin, my Onc and I decided to leave it in for another year so from April 2005 until October 2005 I went in weekly to be flushed. I am now glad I left it in because my tumor markers went up and spots showed up on my liver in a Pet Scan and I had to start up with weekly Herceptin again in November. It is much better to use the port than a weekly IV.

Steph

MJo · 01-05-2007, 01:33 PM

This is interesting, because one women in my support group was Stage II and another was Stage III, both Her2 positive, and their oncologists recommended removing their ports soon after treatment ended. I remember both women during group said "maybe I should leave it in," but both had it removed. I wonder if oncologist opinions vary from practice to practice, or even state to state.

juanita · 01-05-2007, 01:39 PM

I had a port with the first onc that I went to and when I quit him my surgeon removed the port. And then I did rads and switched to a new onc, where I did more chemo and herceptin. I never got another port put back in and was very lucky that I never really had any problems with them finding veins. There was only once they had big problems when it was a different nurse and she just wasn't getting it. A lady I didn't know who was there with her daughter came over and held my hand because she hated seeing me go through that. Still took a few pokes but I was more relaxed. I am so glad so many of you don't have problems with your ports. I hated mine. It was really uncomfortable and I was very conscious(sp?) of it. And the nurses at that oncs office could never access it unless I was laying back almost on my head.

Linda2 · 01-05-2007, 01:53 PM

I wonder why some ports didn't work. A few women that were getting infusions when I did had to lie down, stand up or whatever to draw blood.

Is the actual wire in your neck vein? They never told me how the port actually works, just the risk factors.

Stephanie B. · 01-05-2007, 02:24 PM

I have never had any problems with them using my port. Occasionally they will need me to recline back a little or raise my arm when they draw blood. It must depend on how or where the port is put in.

tricia keegan · 01-05-2007, 04:50 PM

My Onc had mine removed about two weeks after my last herceptin so I think Dr's just vary on this although it did occour to me he did it to avoid the chemo nurse's spending their time flushing ports that are not needed than dealing with the patients who needed them more.My clinic is always very busy and the nurse's dashing around.
I felt a little nervous having it out but am glad now as it did bother me and I have a long way to travel to the clinic if I was just going to have the port flushed.
Hopefully I'll never need it again and agree with Kelly on that.
Tricia

Sheila · 01-05-2007, 05:16 PM

Linda2
My grandaughter had a port for years, and I would flush it monthly...it was stubborn, it depends on if the lumen or open end is lying against the wall of the vein, if it is, moving will alter the position and it will be able to be acessed easier....sometimes they have you take deep breaths too.
As far as your question about the port removal, it seems to be common practice to leave the port in for a year or so, kind of like buying insurance....and it is easy for blood draws when you need them....as long as they keep it functional, like flushing it monthly, it should be no problem....easier to leave in than remove and have to replace it by far....just look at it as a battle scar...that will soon fade away!

AlaskaAngel · 01-05-2007, 05:37 PM

Ports vary a bit, placement varies a bit, and anatomies vary a bit. My PCP's nurse had seen plenty of placements that worked well and those that hadn't (and had a child herself who died of cancer) and when it was time for my port to be put in she went to the surgeon and explained her opinions on just where and how deep it should be put in. Maybe he already knew best, maybe he listened, but by 2 weeks after my port was in I didn't know it was there and over the 4 1/2 years I've had it, it has never been a problem. HER2's are a minority, so I think my PCP was more comfortable with me leaving it in for a while. I'm just too practical to let it go, but if my lifestyle or job meant it showed all the time, or if it was uncomfortable, I'd take it out. I'm stage I (T1c). I don't use any thing to keep it open but I do get it flushed every 3-4 months. I just talked with my surgeon again about it in December, and he was fine with me keeping it.

A.A.

skoolmom · 01-07-2007, 07:55 PM

Tuesday is my last Herceptin treatment. I've been worried about removing my port just in case of mets. My onc said to remove it that I don't need it anymore I'm cancer free. The nurses said I should keep it at least until the next 3 month visit with a flush in between. My port has been great but it does show and I have had stares and comments asking what it is or is it a pace maker. I finally decided to get it taken out with the decision of me not having anymore cancer and not going to get it back either! I'm looking forward to a cancer free life so I have no need or reminder of it. Is this being too optimistic? Should I keep it or loose it?

Marlys · 01-08-2007, 07:49 AM

Barbara2,
My port was implanted on April 25, 2005 and I was taking Coumadin. I have wet macular degeneration in my left eye and am in a clinical trial for a drug that treats the non-affected eye (or not) to determine if the drug can prevent the disease from occuring in that eye. One of the no-no's for the trial is to be on Coumadin and in fact the hemorrhaging in my left eye had worsened most likely due to the coumadin. My oncologist said many things can cause blod clots and that he did not feel coumadin was necessary and he stopped it so I could continue in the trial. My port was removed on August 14, 2006 when I finished my year of Herceptin.
Marlys

Bev · 01-08-2007, 09:27 PM

When I finished my year of H the end of Nov the onc said you can have your port removed now. I said I didn't want to just yet. She looked at me like I was crazy.

My reason was that I didn't want to add any more chores during the holidays. I will have it out this Jan or Feb.

Although my port is small, I don't think it's very pretty. A year of flushing is likely equivalent to or more time than a few hours of surgery and recovery. So I'm thinking positive and will get it out so I can wear my tank tops this summer. BB

sassy · 01-09-2007, 07:54 PM

Had my last herceptin on Dec 5, but onc wants me to keep port for 6 months or so. My surgeon agrees with the practice. I get Lupron shots monthly, so will be getting flushes during these visits as needed. My port is not obvious at all and does not cause me any problems. Rather glad to hang on to it for a while, although I do feel like my odds are good and I don't plan on having to use my port for treatment any more!
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