port use

maggie_w
maggie_w Member Posts: 18
edited March 2014 in Uterine/Endometrial Cancer #1
dear linda and sisters,

i'm almost through with chemo, and am seriously considering removing my port. what do people think about that, and have any of you had yours removed. if, god forfend, i need it again, i could have another put in. i got the impression from my surgeon that there were not additional things medicine could do after chemo and radiation, however my medical oncologist said there were in fact 6 or 7 chemos out there that could extend our lives in the case of recurrence. so, i'm getting contradictory infor from my doctors as well . in any case, i don't really want to be walking around with this strange thing under my skin, though it doesn't bother me so much physically, but is a constant reminder. why do i need that? to me, it's an act of faith (or denial) to have it removed. please let me know your thinking.
thanx so much,
maggie

Comments

  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408
    #2
    Maggie,

    Congrats on almost finishing!

    So novice question here...does everyone get a port implanted or is that only for specific types of chemo? Does that allow you to do the chemo outside a hospital setting??

    So many questions on things I never planned to care about...geez

    Thanks, Laurie
  • maggie_w
    maggie_w Member Posts: 18
    #3
    TiggersDoBounce said:

    Maggie,

    Congrats on almost finishing!

    So novice question here...does everyone get a port implanted or is that only for specific types of chemo? Does that allow you to do the chemo outside a hospital setting??

    So many questions on things I never planned to care about...geez

    Thanks, Laurie

    port
    laurie,
    most people have ports implanted if they are having any kind of chemo; it really is easier than being poked each time, or iv etc., because it is a sterile procedure, i think it can only be used in hospital and hospital like settings. my chemo is done in a separate dhemo unit attached to a hospital. yeah, we learn alot about things we never thought we'd need to know. thanx for the congrats. next to last tomorrow, then last next month. then minimal radiation, which i think is a good idea, and makes sense. then my acupuncturist is creating a regimen post medical treatment that will be healthy and good for me!
    maggie
  • Songflower
    Songflower Member Posts: 608
    #4
    How long to leave a port in
    My gyn onc said she would leave it in about a year. I think it varies. I agree it is a constant reminder of being a cancer patient. There are several types of ports; some can be used with IV contrast dye for scans such PET, CT etc and this helps to save your veins. I have a small one that cannot be used for PET scans. I think they leave it in because the risk of recurrance is high. Mine is small and really doesn't bother me. I have a friend who has terminal lymphoma and had the large one put in and she wanted it out after chemo so they did take it out. Talk to your oncologist about it. I am not sure how many times you can have them put in so that may be an issue. I am use to having it in now; my dear friend also has one and it's almost "normal" for us to get it irrigated monthly.

    Diane
  • fuzzytrouble
    fuzzytrouble Member Posts: 212
    #5
    PORT
    I have a power port and it can be used for ct scans and for blood test, I had it put in 2007,and my doctor wanted me to keep it in because of follow-up scans and blood test. My veins are so bad. It doesn't bother me, and I am glad I kept it because I started with Doxil today. This is my second recurrence from endometrial cancer in my lungs. Cancer will be with me forever, so as long as I can keep my port so it stays. Good luck with your decision

    Here's to Life,
    Sharon
  • maggie_w
    maggie_w Member Posts: 18
    #6
    Songflower said:

    How long to leave a port in
    My gyn onc said she would leave it in about a year. I think it varies. I agree it is a constant reminder of being a cancer patient. There are several types of ports; some can be used with IV contrast dye for scans such PET, CT etc and this helps to save your veins. I have a small one that cannot be used for PET scans. I think they leave it in because the risk of recurrance is high. Mine is small and really doesn't bother me. I have a friend who has terminal lymphoma and had the large one put in and she wanted it out after chemo so they did take it out. Talk to your oncologist about it. I am not sure how many times you can have them put in so that may be an issue. I am use to having it in now; my dear friend also has one and it's almost "normal" for us to get it irrigated monthly.

    Diane

    port use
    thanx for your comment diane, i did speak with my oncologist who said it was fine if i wanted to remove my port. i also spoke to my acupuncturist who thought it was a good idea, so, i'm pretty set on doing it, since for me the plusses outweigh the minuses. will look into whether this port can be used for pet and ct scans, though. i've heard it called the "cadillac" of ports, so my guess is that it can be used for pretty much everything. i still have some other people with whom to consult, before i make a final decision, like the surgeon who put it in, and who i'm sure will want me to keep it for awhile, and the charge nurse where i'm infused, who is extremely sensible and competent. so, more later.
    thanx again,
    maggie
  • maggie_w
    maggie_w Member Posts: 18
    #7
    fuzzytrouble said:

    PORT
    I have a power port and it can be used for ct scans and for blood test, I had it put in 2007,and my doctor wanted me to keep it in because of follow-up scans and blood test. My veins are so bad. It doesn't bother me, and I am glad I kept it because I started with Doxil today. This is my second recurrence from endometrial cancer in my lungs. Cancer will be with me forever, so as long as I can keep my port so it stays. Good luck with your decision

    Here's to Life,
    Sharon

    port use

    hi sharon,
    i think mine is also a power port now that you mention it , and can be used for most things. i'd like to try life without it, however. my veins are ok, and can probably tolerate some pokes for awhile. i'm sorry to hear of your recurrence, and am hoping for the best for you. thanx for responding. yes, here's to life!
    maggie
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #8
    maggie_w said:

    port use

    hi sharon,
    i think mine is also a power port now that you mention it , and can be used for most things. i'd like to try life without it, however. my veins are ok, and can probably tolerate some pokes for awhile. i'm sorry to hear of your recurrence, and am hoping for the best for you. thanx for responding. yes, here's to life!
    maggie

    I am keeping my port for
    I am keeping my port for awhile!!

    I have a regular port - and because of recurrence rate of UPSC I am keeping mine for at least a year, maybe longer. I think of it as my "good luck charm" and so far it is working fine since I've been NED for 6 months. I get another check up in 2 weeks so all my fingers and toes are crossed.

    It doesn't bother me at all - just have to get it flushed every 6 weeks and pay the $40 copay for this so there is a real expense involved - several hundred dollars a year. But I'd rather keep it than have it in and out repeatedly - that was no fun!!!

    Good luck with your decision. Mary Ann
  • kkstef
    kkstef Member Posts: 688 Member
    #9
    daisy366 said:

    I am keeping my port for
    I am keeping my port for awhile!!

    I have a regular port - and because of recurrence rate of UPSC I am keeping mine for at least a year, maybe longer. I think of it as my "good luck charm" and so far it is working fine since I've been NED for 6 months. I get another check up in 2 weeks so all my fingers and toes are crossed.

    It doesn't bother me at all - just have to get it flushed every 6 weeks and pay the $40 copay for this so there is a real expense involved - several hundred dollars a year. But I'd rather keep it than have it in and out repeatedly - that was no fun!!!

    Good luck with your decision. Mary Ann

    Port removal
    My port was a Smart Port and was not visible or uncomfortable. I had it removed after my CT scans were done 3 months after I finished chemo. My oncologist felt that the risk of an infection or a clot were not worth leaving it in....and can be reinserted should I need one again.

    Karen
  • maggie_w
    maggie_w Member Posts: 18
    #10
    daisy366 said:

    I am keeping my port for
    I am keeping my port for awhile!!

    I have a regular port - and because of recurrence rate of UPSC I am keeping mine for at least a year, maybe longer. I think of it as my "good luck charm" and so far it is working fine since I've been NED for 6 months. I get another check up in 2 weeks so all my fingers and toes are crossed.

    It doesn't bother me at all - just have to get it flushed every 6 weeks and pay the $40 copay for this so there is a real expense involved - several hundred dollars a year. But I'd rather keep it than have it in and out repeatedly - that was no fun!!!

    Good luck with your decision. Mary Ann

    port use

    hi mary ann,

    thanx for your response, and CONGRATULATIONS for being NED six months, may it last for another 6 decades! i spoke to the charge nurse when i had my next to last chemo today, and before i'd even finished my sentence re: removing the port, she said " absolutely yes."
    she could see how it could be constant reminder, and her thinking is that whatever makes the patient feel good (and isn't harmful), should be done. so that was that. she also said it isn't a big deal to have it removed, and then reinserted if necessary.

    i hear that yours is more like a good luck charm, and that it does cost some real money, and you have to remember to have it flushed, but it's worth it. i think that's exactly what the charge nurse was talking about: whatever makes the patient feel good about what she's doing.
    also, she didn't say this, but i think it was implicit, that it's some small thing we have control over, when we've had so much happen that we've had no control over at all.

    warmly,
    maggie
  • maggie_w
    maggie_w Member Posts: 18
    #11
    daisy366 said:

    I am keeping my port for
    I am keeping my port for awhile!!

    I have a regular port - and because of recurrence rate of UPSC I am keeping mine for at least a year, maybe longer. I think of it as my "good luck charm" and so far it is working fine since I've been NED for 6 months. I get another check up in 2 weeks so all my fingers and toes are crossed.

    It doesn't bother me at all - just have to get it flushed every 6 weeks and pay the $40 copay for this so there is a real expense involved - several hundred dollars a year. But I'd rather keep it than have it in and out repeatedly - that was no fun!!!

    Good luck with your decision. Mary Ann

    port use

    hi mary ann,

    thanx for your response, and CONGRATULATIONS for being NED six months, may it last for another 6 decades! i spoke to the charge nurse when i had my next to last chemo today, and before i'd even finished my sentence re: removing the port, she said " absolutely yes."
    she could see how it could be constant reminder, and her thinking is that whatever makes the patient feel good (and isn't harmful), should be done. so that was that. she also said it isn't a big deal to have it removed, and then reinserted if necessary.

    i hear that yours is more like a good luck charm, and that it does cost some real money, and you have to remember to have it flushed, but it's worth it. i think that's exactly what the charge nurse was talking about: whatever makes the patient feel good about what she's doing.
    also, she didn't say this, but i think it was implicit, that it's some small thing we have control over, when we've had so much happen that we've had no control over at all.

    warmly,
    maggie
  • maggie_w
    maggie_w Member Posts: 18
    #12
    kkstef said:

    Port removal
    My port was a Smart Port and was not visible or uncomfortable. I had it removed after my CT scans were done 3 months after I finished chemo. My oncologist felt that the risk of an infection or a clot were not worth leaving it in....and can be reinserted should I need one again.

    Karen

    port use

    hi karen,
    thanx for your response. i have a different port than yours and maybe some ports are more susceptible to infection/clots than others, but those are sure good reasons to have the port removed. i'll keep that in mind when i speak to my surgeon, who i know is not going to be happy about my decision. he was the best surgeon i could have had for my huge surgery, he left no stone unturned, and didn't stop until he felt he got all the cancer he could see. so, i appreciate and admire him greatly, only he's hard to have a conversation with, especially if i disagree with him, and so far we've had a couple. but, my mind is made up, out goes the port.
    best of luck and health to you.
    maggie

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