My doctor said I can have my port remove at my first three month check up..strange?

Annabella Rose
Annabella Rose Member Posts: 59
in Uterine/Endometrial Cancer #1

I had my first follow up with my oncolgest today. The office was packed and he was running 2 1/2 hours late. When it was my turn to get examined, he mention to the nurse I can be set up to have my port removed. Then he said, no wait, let's get her pet scan first. He didn't order blood work, which was strange to me. Is that normal?

I thought you should have the port remained for the first 2 years, just in case

Comments

  • AWK
    AWK Member Posts: 364 Member
    #2
    So glad you went.

    My doctor recommended I keep the port for a year.  And for the first three month checkup (my only one) he ordered bloodwork, ct scan and chest X-ray.  I have been in constant care ever since.  Hopefully others will weigh in.  Keeping you in my prayers.  Anne

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #3
    My mistake

    My gyn Onc said leave it in for 2 years.  My chemo Onc said go ahead and take it out.  I did!!  7 months later I had to have a new one put in.  I wish I had listened to the first opinion.  Lou Ann

  • survivingsu
    survivingsu Member Posts: 134 Member
    #4
    A year also

    Mine was removed after a year.  They were careful to continue with the CT scans/exams/blood work.  It's been 6 years since the cancer and 5 since my port was removed.  Last March I graduated to no longer having the CTs unless there is a symptom or blood work merits one. Right after my cancer treatment I had CTs every 3 months, then 6 months, then once a year.  I had a couple PT Scans when something questionnable showed up in a CT. 

    I do not miss all the scans and the worry :0)

    My very best to you Annabella,

    Susan

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    #5
    survivingsu said:

    A year also

    Mine was removed after a year.  They were careful to continue with the CT scans/exams/blood work.  It's been 6 years since the cancer and 5 since my port was removed.  Last March I graduated to no longer having the CTs unless there is a symptom or blood work merits one. Right after my cancer treatment I had CTs every 3 months, then 6 months, then once a year.  I had a couple PT Scans when something questionnable showed up in a CT. 

    I do not miss all the scans and the worry :0)

    My very best to you Annabella,

    Susan

    congrats!

    Wow! So happy for your recovery! Great news for all of us to celebrate with you.

  • DrienneB
    DrienneB Member Posts: 182
    #6
    Port and follow-ups

    Hi Annabella and others,

    I had stage 3B uterine MMMT or carcinosarcoma diagnosed in spring of 2013. I had a power port for my chemo June - Sept. The gyn/onc who did my surgery said that I should keep it in for a few years, but the hematological oncologist who administered my chemo said I could remove it whenever I wanted - my choice. I had a continually sore area around the port as well as a rash on my neck where the line met my jugular vein. I also hated having to guard myself from hugs, and was eager to regain some kind of normalcy. My hematological onclogist said that I coul have another port if I needed one later, so I had it removed that December. I got a keloid scar there, however, and the area is still bruised and irritated. But I don't regret having it removed.

    My gyn/onc surgeon did not want me to have a PET scan at all, and did not want me having CT scans after the first year from diagnosis. I lost faith in her for a number of reasons and moved on to the head of the gyn/onc department at Stanford University Med. Ctr. He and the more local hematological oncologist are both now caring for me (I live in Berkeley, CA). I am 2 years and a couple of months since diagnosis/surgery. I did wind up having one PET scan midway through chemo that I had to fight for, and CT scans every 3 months for the first 15 months. After that we determined that I would have a CT every 6 months. However, I have recently asked my gynecological oncologist if it would be okay to just skip CT scans until I get other signs of problems, and he thinks that's fine. He said that doctors are somewhat divided in opinion about frequent CTs.

    best,

    j

  • Hopeful162
    Hopeful162 Member Posts: 82
    #7
    Port Removal

    I had my port removed around three months post my last chemo infusion. I was originally diagnosed Stage 1A, Grade 3 at surgery, but my doctor felt that with UPSC I should still have three rounds of carbo/taxol chemo for extra assurance. So after getting a new baseline CT scan with contrast for comparison in the future (done via port) I was scheduled to have my port out. I am on three month surveillance for three years and then six months for another two years. Hopefully no findings will necessitate reinstalling a port!

    In the final analysis, I am glad I had a port even though initially the whole idea rather creeped me out. Infusion was much more pleasant with a port rather than an IV.

  • pinky104
    pinky104 Member Posts: 574 Member
    #8
    Port Removal

    I actually kept mine in for 3 years.  I was afraid I'd jinx myself by having it taken out.  About 6 mos. after having had it removed, I had some abdominal pain and had a CT scan ordered which showed a non-specific mass.  It turned out that it's not cancer because it hasn't grown, but I really did think I'd jinxed myself.  I waited to have it removed for another reason, too.  I didn't want to have to have it put in again because the room where the interventional radiologists worked was kept in the low 60's and I was freezing throughout the insertion procedure.

    When the interventional radiologists removed the port, they commented that I was wise to have kept it in so long, and they wished other people would wait that long to get theirs removed.  They commented that too many people rush to get them removed and then have to have them reinserted.

    My port was always irritating to me, so I was glad to be rid of it when I did get it removed.  The seat belt in my car rubbed it the wrong way, and even when I got a sheepskin cover for the belt, that didn't help much.  I also didn't like how it would show when I wore a v-neck shirt.  I hope I don't ever need one again! 

  • flyerette65
    flyerette65 Member Posts: 65
    #9
    pinky104 said:

    Port Removal

    I actually kept mine in for 3 years.  I was afraid I'd jinx myself by having it taken out.  About 6 mos. after having had it removed, I had some abdominal pain and had a CT scan ordered which showed a non-specific mass.  It turned out that it's not cancer because it hasn't grown, but I really did think I'd jinxed myself.  I waited to have it removed for another reason, too.  I didn't want to have to have it put in again because the room where the interventional radiologists worked was kept in the low 60's and I was freezing throughout the insertion procedure.

    When the interventional radiologists removed the port, they commented that I was wise to have kept it in so long, and they wished other people would wait that long to get theirs removed.  They commented that too many people rush to get them removed and then have to have them reinserted.

    My port was always irritating to me, so I was glad to be rid of it when I did get it removed.  The seat belt in my car rubbed it the wrong way, and even when I got a sheepskin cover for the belt, that didn't help much.  I also didn't like how it would show when I wore a v-neck shirt.  I hope I don't ever need one again! 

    Port Removal

    I had my port removed after 2 years. It irritated me a lot and like Pinky, I was glad to have it removed.  My gyn/oncologist told me that I could get it out imeediately if I wanted to but I decided to wait, just in case.  I have had a few scares where he thought he felt a mass but that was ruled out by a CT scan and also one where I had some mystery bleeding but CT scans and surgery ruled out anything scary.  I have not had a CA125 for probably two years.  I'm now at the 4 year 3 month mark and with having had  Stage 3A, Grade 4 USPC I feel very lucky.  Sometimes I feel like it's going to come back and bite me hard but I can't worry about that right now.

    On another note, besides losing my mom in June due to metatastic breast cancer, my estranged husband now has been diagnosed with prostate cancer.  I have tried to find out what his numbers are (Gleason score, PSA post surgery) and he said his daughter knows all of that because he would prefer not to know. Talk about behaving like an ostrich!

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #10
    Had mine in for over 6 years

    I had mine in for 6 years.   (My diagnosis was Endometrial Adenocarcinoma)  Although they weren't sure where it originated so my doctor kept putting it off until my next scan.   Then he retired.  My new doctor didn't wan't to take it out.  Then I got another doctor.  No one wanted to remove it.  It wasn't until my local hospitals refused to flush it out (over 6 months) that I finally got a radiologist to remove it after one last clean scan.

    Kathy

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