Port removal

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santi2018
santi2018 Member Posts: 10

Hello all

I’m just curious to see, on March 18 I finished my 8 rounds of cmf and oncologist said that we can talk about port removal , finished radiation on May 8 had an appointment with oncologist yesterday where she says now that bloodwork needs to be done first, this wasn’t mentioned before and now I’m feeling like I’m getting the run around, chemo was an option from the beginning, it was never mandatory. Port was recommended to avoid damaging veins in arm. Now that treatment is over and port won’t be used regularly I want it out. Have to wait 6 more weeks.

Comments

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited May 2019

    Are you HER2 positive?

  • DATNY
    DATNY Member Posts: 358
    edited May 2019

    I chose to keep the port for a while. I finished last September and since then it gets flushed every six weeks. I want to keep it for two years, when the risk of coming back is high. My mo is on the opposite end, he recommended removal immediately after treatment was done.

  • Pommom1809
    Pommom1809 Member Posts: 176
    edited May 2019

    my oncologist asked me today if I would like my port removed. I certainly would like to have it removed. I get radiation soon, so I guess it would be removed after that. I’m three weeks out from my mastectomy

  • DiagnosisDisruption
    DiagnosisDisruption Member Posts: 108
    edited May 2019

    I had TCHP x 6, then had 11 more Herceptin all throughout 2018. Last Herceptin was December 26, 2018. The port was removed December 27, 2018. Yes, the next day. For me personally, I didn't need it left in "just in case". "Just in case" could be six months, four years, 15 years, never...? I had it yanked out. I can put it back if it ever becomes necessary. Until then, I needed it out to get on with my life.

    To note: best day ever, getting the port removed.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited May 2019

    They said the earliest I could get it out was two weeks after chemo was done. I scheduled the removal for two weeks on the dot. I hated that damn thing! (I got it removed before radiation.)

  • Homemadesalsa
    Homemadesalsa Member Posts: 153
    edited May 2019

    Ya mine was painful the whole time. MO was sceptical, but when I had it out 4 weeks after final TPH, the surgeon noted that it had a low-grade infection and said, "no wonder it hurt!"

  • DiagnosisDisruption
    DiagnosisDisruption Member Posts: 108
    edited May 2019

    ruthbru - I wanted it removed the same day as the final Herceptin. After all, I was already there at the hospital. Just hop from infusion over to the surgery center, no biggie. The wouldn't do it. I had to drive an hour back the next day to have it taken out. Still totally worth it!

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited May 2019

    Ruth, why did they say wait two weeks?

  • Pommom1809
    Pommom1809 Member Posts: 176
    edited May 2019

    The surgeon who put my port in will be taking it out in July. I will be so glad to get it removed, it’s been bruised up since it was put in.

    Doris

  • ruthbru
    ruthbru Member Posts: 57,235
    edited May 2019

    I don't know why they said two weeks. I was doing dose dense chemo every two weeks so maybe they wanted to make the drugs were out of my system, or that I needed the recovery time, or that I wouldn't have any weird SE's from the last infusion ?????

  • Mncteach
    Mncteach Member Posts: 274
    edited June 2019

    I get mine out tomorrow and was told I had to wait a month pfc.... I’m excited

  • ruthbru
    ruthbru Member Posts: 57,235
    edited June 2019
  • PiperKay
    PiperKay Member Posts: 173
    edited July 2019

    Can anyone who's had the port removed share a description of the experience? There are lots of port installation stories, but I haven't found one for removal that's very detailed. Obviously the theme is "so glad it's out!!" But it would help me to know what to expect besides the usual, "it's a much simpler procedure than installation." My removal is scheduled for September 3.

    I was originally scheduled to have my port removed a week or so after my last radiation treatment which was May 21, but my surgeon said she didn't want to take it out at the beginning of summer so that I wouldn't have the risk of infection over my head while I was out doing summertime activities like swimming, etc. Boy was I disappointed! That thing has been bothering me the whole time although I am happy to have had it for the chemo because I know my arm veins couldn't have taken it. And it gets in the way of bra straps, bathing suit straps, camisole straps, well just all straps.

    So since I haven't been using it since March 21, my last chemo, I've had to have it flushed every 4-5 weeks. I saw the MO last week for labs and flushing, but the nurse couldn't get any blood through the port! She said it flushed well but there must be a blockage, so I had to get blood drawn from my arm. Apparently since I do have removal scheduled for Sept 3, though, there wouldn't be any need to try to clear the blockage. Sheesh!

    Anne

  • PiperKay
    PiperKay Member Posts: 173
    edited July 2019

    Hi all!

    Just found a video of a port removal on YouTube, so if you want to see a real one done, take a look below. Doesn't look too bad, but I don't think I'd want to watch it done on me...

    https://youtu.be/XYwQBETUA44

    Anne

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited July 2019

    I had mine removed in the surgery center. I was out and I'm so glad.

  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited July 2019

    In 2003 I had a DX of IDC and needed a re-excision due to unclear margins. During that surgery my port was also put in. I was supposed to be heavily sedated, I think they called it twilight sleep. but I am not sure. I went to the OR, they prepped me, put in the IV, put a drape over my head and I laid there, eyes wide open waiting for the anesthesia to kick in. It didn't, well, not as I expected. I was wide awake, felt them tugging and pulling on me, heard every word of their conversation and started to feel pain. I panicked and tried to talk but nothing came out, I tried to move and nothing. I finally held my breath as long as I could. Still no one ever looked under the drape. I held my breath several times and finally somewhere in my extreme panic mode I fell asleep. I awoke just as I was before, in a state of panic, but now in recovery. I was visibly upset, they wanted to know why, I couldn't tell them it was so traumatic. Only after I woke up screaming in the night did I confess to my husband. He told me to call the doctor in the morning. I couldn't even do that, so I wrote a letter to her and told her what happened. I listed all the things I could remember about the conversations, which really didn't seem professional, but I guess to keep alert some trivial conversation works in the OR. Anyway, she responded with a phone call and we talked about it. I told her I couldn't go through it again and since I needed my port to be taken out after my Chemo, but before my radiation, she agreed to take it out using local anesthesia.

    Let me tell you, it was a snap! As bad as the experience was when it was put in, it was totally opposite and easy when it was taken out! It was weird because since it was local I could drive to and from the hospital myself. I will never forget the odd but welcome feeling of shopping in a Hallmark Store right after my port was removed. I thought how strange to be in the OR in the morning and in a store a few hours later!

    I have had general anesthesia 7 times since the horrible experience and never had a repeat of that! BTW, my breast surgeon removed my gallbladder the following year and she made sure the anesthesia did what it was supposed to!

  • BellasMomToo
    BellasMomToo Member Posts: 305
    edited July 2019

    Piperkay: My BS removed my port in her office. I was given an injection and she removed it. All I felt was a little tugging cause I had my port for a year and tissue grew around it. Then she closed the incision with stiches and glue. The whole process took less than 20 minutes.

  • MexicoHeather
    MexicoHeather Member Posts: 365
    edited July 2019

    PiperKay: Ask to get that appointment moved up. It's a quick procedure and you have waited long enough. It's an outpatient thing! No downtime.I got it out 2 weeks after chemo ended. I hated the port.

  • DiagnosisDisruption
    DiagnosisDisruption Member Posts: 108
    edited July 2019

    PiperKay - I had my port removed December 27th 2018 (Merry Christmas to me). I went into a back room at the surgery center with my breast surgeon and a nurse, lay on a table, they numbed me with a couple injections (yes, they stung). When I said I could feel tugging, the nurse held up the port that was already out of my body. The tugging was the doctor stitching me up. Aside from the needle stings, no pain, no fear - and I am one to freak out over EVERY procedure!

  • Pommom1809
    Pommom1809 Member Posts: 176
    edited July 2019

    I get my port removed on the 14th of this his month. Can’t wait to get this thing removedq

  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited July 2019

    Woohoo Pommom!!!! I know I felt the same about mine coming out! Freedom!!!!

    Happy

  • PiperKay
    PiperKay Member Posts: 173
    edited July 2019

    Thank you everyone!! I am SO looking forward to it being out and now I can see that it's going to be no big deal.

    Mavericksmom, what a horrifying experience you had getting it installed! I am so sorry you had to go through that on top of everything else. I had a big emotional reaction when I was wheeled into the OR for installation which I didn't have at all with the original lumpectomy, probably because I didn't get the valium or whatever it was! Started crying on the table which made everyone stop and look at me and assure me everything was going to be OK. Luckily, everything was OK and I came out of the anesthesia with my new little friend. I'm glad I had it for the chemo but I want it out!!

    MexicoHeather, I would love to move it up, but I'm just going to keep this appointment as is. Given everything else going on in my life right now, not BC related, it would be hard to find a good time.

    Pommom1809, you are so excited you're thinking it's already August! But still, not too much longer!!! Yay!!!

  • WC3
    WC3 Member Posts: 1,540
    edited July 2019

    I kind of wanted to keep mine for until I passed the two year mark as well but my MO wanted it out and while this was the most comfortable port I've had, the catheter would chafe and cause pain/discomfort up near my collar bone when my skin got damp or clammy, and the placement impaired my upper body mobility, so I couldn't really exercise to my full potential with it and the implants pulled on the skin over it when I was not wearing a bra.

    I had the doctor who removed it confirm that they could get one back in if needed before we proceeded with the removal.

    It was similar to the implantation but they did not have me wipe down with disinfectant wipes first, did not make an incision near my collar bone and did not use the fluoroscope.

  • PiperKay
    PiperKay Member Posts: 173
    edited September 2019

    Hello all! I just wanted to report that the port is OUT!!! Hooray! And it was a piece of cake. Took about 15 minutes total from when I walked into the exam room. Now just a couple of days with the bandage, a week or two with steri-strips, and that whole thing is history!

  • ruthbru
    ruthbru Member Posts: 57,235
    edited September 2019

    Congratulations!

  • PiperKay
    PiperKay Member Posts: 173
    edited September 2019

    Thanks, ruthbru!

  • ruthbru
    ruthbru Member Posts: 57,235
    edited September 2019

    Getting rid of that thing was such a relief to me!! Very much the closing of a very bad chapter.....

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