Someone PLEASE help I'm not clear anymore and I'm so tired

jhope
jhope Member Posts: 58
edited March 2014 in Breast Cancer #1
I am extremely worried about topic posted and answers to port questions. I have a sub-clavian port (left chest wall) and only 3 months post chemo and radiation. The docs say months or at least a year before removing. My surgeon said removal was an OFFICE procedure! Everyone posted they were under general anesthisia? This concerns me because my port was not "still" as martyzl replied. I had a mammogram in the middle of chemo and my port moved 1/2". The Onc said this was not possible and I said "OKAY look at the big shunt hole that is moved to hit it" duh. The day after the mammogram during chemo the shunt came out and infused the taxol into my chest wall. The nurses freaked out and my chest was all spongy. The didn't know how much was into chest, but had to flush my port any way. They took a longer 1" shunt and missed my port (oh did that hurt) because of the swelling, they finally flushed it, and the Onc said it moved probally because of scar tissue. I'm at a loss because my surgeon is so weary of me because he said I "worried too much" was "anxious", etc. Finally I said "look, we are talking about bi-lateral masectomy, if we were talking about cutting off your testicles you would have a lot of questions and be anxious; and nobody would be writing secondary diagnosis: anxiety disorder on your chart. Ever since then he is friendly but condescending or maybe I'm paranoid. I just don't feel able to stick up for myself or if it is wise to switch surgeons until port is out if he put in? I am so tired and can't think strait. I have worked full time through all of this, everyday is such a struggle I almost want to give up but ironically don't know how thats done. God bless, putting one foot in front of other, Julia

Comments

  • ksfc
    ksfc Member Posts: 251
    #2
    Hi Julia, I also had a sub-clavian port on the left side. Mine was very uncooperative, but the onc still insisted that I keep it until 1 year past treatment. Then I had it out in the surgeons office. When he put it in, I was sedated at the hospital, but not under general anesthesia. Taking it out, he just used a local and although it took a little while, it wasn't painful - no big deal. Mine did move during the time I had it - that was noted on my chest x-ray by the radiologist. You've been through a lot and if you weren't a little anxious something would be wrong. Don't allow yourself to be treated poorly. If you're not comfortable with your surgeon, find a new one. There are wonderful, compassionate docs out there, but sometimes it takes a little looking. Take care - Diane
  • DeeNY711
    DeeNY711 Member Posts: 476 Member
    #3
    Julia, I had one port put in by a radiologist with only local anesthetic and removed with only local anesthetic. The second port had to be placed by a vascular surgeon in the OR, and he used local anesthetic but I had what they call conscious sedation although I could swear that I was unconscious through the whole thing. Same when that one was removed. I opted to have the port removed immediately after chemo because it was smack dab in the middle of the radiation zone.

    I've had other surgical procedures done during office visits and can see where placement of a port could be done as an office procedure.

    What you have been through is an awful lot. Reading about the taxol being infused into your chest wall made me cringe. I'm so very sorry that happened to you. You are not paranoid. Surgeons perform technical procedures, and the fact that a talking being is attached to whatever part the procedure is done on sometimes unnerves them. I once kept saying OUCH OUCH during a procedure. The surgeon stepped back from the table and growled at the anesthesiologist WHAT DID YOU GIVE HER? The anesthesiologist got all higgledy piggledy and blurted Doctor! I gave her blah blah millegrams of BLAH BLAH. The surgeon looked over his mask and hissed WELL GIVE HER MORE!
    Love,
    Denise
  • blessings1020
    blessings1020 Member Posts: 54
    #4
    Just want you to know I am thinking about you.

    I still have my port in and there has been no discussion as to when/how it will be removed.

    I can tell you that it is starting to "pop" out of my skin.

    Diane
  • martyzl
    martyzl Member Posts: 196
    #5
    Oh Julia! *hugs*
    Don't let anyone treat you poorly! As KSFC said, look into a more "human"/compassionate surgeon, alright??
    I didn't mean to scare you with my port experience and it really wasn't all that bad, sweetie! It was put in while I was under for my mastectomy/reconstruction and I was squeamish about having it out while awake. I did have the option of having it out in office and chose not to. I'd been through enough and kept imagining some horrid slurrrrping sound as it was pulled out!!! *laughing* Just my hang-up...
    Find someone you are comfortable with. Please. You are worth it!!!
    Have you met any other BC people in your area yet? If you live anywhere in my area (Michigan), I will gladly come and offer support and a hand to hold!
    There is NOTHING wrong with you! You are dealing with all manner of experiences and you are perfectly normal. You are strong. We are making it through this, yes??
    Yes, you are tired and thinking straight is beyond your world right now. That is perfectly normal! You will go beyond where you are at this moment. Believe in yourself. Ask us for shoulders/reassurance to buoy you up whenever you need it. We are here for each other. *smiles*

    *pats you gently, smiling* Now go out and find a good surgeon for yourself and let us know how things are coming along, ok Julia? Feel free to email me at any time.

    Marty
  • jhope
    jhope Member Posts: 58
    #6
    martyzl said:

    Oh Julia! *hugs*
    Don't let anyone treat you poorly! As KSFC said, look into a more "human"/compassionate surgeon, alright??
    I didn't mean to scare you with my port experience and it really wasn't all that bad, sweetie! It was put in while I was under for my mastectomy/reconstruction and I was squeamish about having it out while awake. I did have the option of having it out in office and chose not to. I'd been through enough and kept imagining some horrid slurrrrping sound as it was pulled out!!! *laughing* Just my hang-up...
    Find someone you are comfortable with. Please. You are worth it!!!
    Have you met any other BC people in your area yet? If you live anywhere in my area (Michigan), I will gladly come and offer support and a hand to hold!
    There is NOTHING wrong with you! You are dealing with all manner of experiences and you are perfectly normal. You are strong. We are making it through this, yes??
    Yes, you are tired and thinking straight is beyond your world right now. That is perfectly normal! You will go beyond where you are at this moment. Believe in yourself. Ask us for shoulders/reassurance to buoy you up whenever you need it. We are here for each other. *smiles*

    *pats you gently, smiling* Now go out and find a good surgeon for yourself and let us know how things are coming along, ok Julia? Feel free to email me at any time.

    Marty

    You are all so KIND!! I smile as I read your messages! The slurpy noise worry sounds like me, lol. I do feel better thank you all, Julia
  • deborah053
    deborah053 Member Posts: 4
    #7
    Just wanted to add some stuff. My port is still in and I am a year post and have no plans to remove it yet. And yes they do move. Just think about what a BB would do not too far under the skin. the important thing is the _other_ end doesn't move :-)

    You definitely need a new surgeon. You are not over anxious. And yes a port may be an outpatient procedure. i really like your testicles comment. If you have had the chemo, waiting until May should not cause a great deal of problems I would think. If you have a good relationship with your oncologist, talk to her/him.
    Have a good time on the good days and rest on the bad days. Good luck.
    Deb
  • prayerangel
    prayerangel Member Posts: 147
    #8
    deborah053 said:

    Just wanted to add some stuff. My port is still in and I am a year post and have no plans to remove it yet. And yes they do move. Just think about what a BB would do not too far under the skin. the important thing is the _other_ end doesn't move :-)

    You definitely need a new surgeon. You are not over anxious. And yes a port may be an outpatient procedure. i really like your testicles comment. If you have had the chemo, waiting until May should not cause a great deal of problems I would think. If you have a good relationship with your oncologist, talk to her/him.
    Have a good time on the good days and rest on the bad days. Good luck.
    Deb

    Here's my port story. I woke up from being under anesthesia for having my port, look in the mirror, and there are two surgical scars, one on my neck, the other on my chest and futher in on my neck, towards my arm was many many black and blue spots, where it looked like needles were inserted. My whole neck there was black and blue. I didn't know what to make of it!! Ended up, he had to try 2 places before he finally got it in. I had it for a year and he took it out in his office with a local. When he took it out I said I wanted to bring it home for my "cancer collection". He cleaned my pieces of gut off it and I have it. My little cancer museum I call it. Please don't work so hard. Rest in your car during your lunch break. Do nice things for yourself. Rest when you get home. God bless you. Don't be afraid. I always thought of all the other people I saw going through their treatments, and their diagnosis were way worse than mine.

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