Ports and thoughts about them

Lifeisajourney
Lifeisajourney Member Posts: 216
edited March 2014 in Colorectal Cancer #1
When I received chemo,we had discussions on ports, where most were, (our group had mostly right ones) and how long too keep them. I have heard such varying thoughts and haven't had that talk with my onc yet. I am Stage 3 off chemo for 1 year and so far no reoccur., but some onc nurses said people keep them forever for good luck and some have them taken out, but rule of thumb is 5 year to be considered cured and should keep till then. I can't at this point think about getting it out since it is doing ok, but I wonder if this is paranoria. I just know if I take it out, I'll need it. It there protocol for ports??
Just wondering. Thanks for all your postings, it makes me feel informed. Pat
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Comments

  • HollyID
    HollyID Member Posts: 946 Member
    #2
    Hi Pat...
    You're right... life is a journey. I'm so glad your cancer has not reoccurred. I'm also a stage III, and have two treatments left. :)

    As far as ports are concerned, I think it's totally up to you what you want to do. My surgeon told me some people get theirs out right away and some keep them forever. My oncology nurses tell me I need it flushed once a month. Me... I plan on keeping mine around for a few years, just to make sure I don't need it again. Mine is located on my left side right under my collarbone. :)
  • Daffodil324
    Daffodil324 Member Posts: 59
    #3
    Ports
    I finished chemo almost 2 months ago and still have my port (it's on my left). I'm planning on keeping it for awhile, haven't decided how long yet. I asked about keeping it versus having it taken out, and my doctor and the chemo nurses said different people make different choices--some want the reminder of chemo removed as soon as possible, some want to keep it for awhile in case there's recurrence and they need it again. The oncologist tried to encourage me a little to get it out so I'd feel more as if I'd returned to normal life, but the chemo nurses were more on the side of keeping it for awhile just in case.

    I'm a stage IIIb and I know recurrence is possible, especially during the first couple of years if I have that right. I also have a good port that works well, doesn't bother me, and has never caused me problems. So I don't mind getting it flushed once a month or so for the time being. If I'm as lucky as you and all goes well for a long time, I would consider having it removed later on, but I'll wait and see.
  • classicman
    classicman Member Posts: 34
    #4
    HollyID said:

    Hi Pat...
    You're right... life is a journey. I'm so glad your cancer has not reoccurred. I'm also a stage III, and have two treatments left. :)

    As far as ports are concerned, I think it's totally up to you what you want to do. My surgeon told me some people get theirs out right away and some keep them forever. My oncology nurses tell me I need it flushed once a month. Me... I plan on keeping mine around for a few years, just to make sure I don't need it again. Mine is located on my left side right under my collarbone. :)

    I recieved my Power port in
    I recieved my Power port in June 09, and used it off and on for a year, it made giving blood for labs easy, and getting Chemo even easier, Mine hurt alot, as it was under my collorbone as well, I am in Law enforcement by trade and the thought of some Irrat prisoner hitting me in the right spot,and my badge rubbing on it was a concern, I had mine removed in May 2010 and im staying positive that i'll never need it again, and also with the port needing regular flushing, my insurance requires me to pay 50$ every time,
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #5
    Ports
    I would keep mine in for good if/when I get to that point. I do Have an infusion pump (HAI) that I've not used in 5 years that is still in and I have absolutely no intention of having it removed. I think posts have to be flushed very 8 weeks or so. That's all the maintenance they need as far as I know...
  • khl8
    khl8 Member Posts: 807
    #6
    I finished chemo August 09,
    I finished chemo August 09, had the port removed in February of this year. I wanted it out, the scheduling for the flushing every month was a pain to do and I hope to never need one again.
  • biglaur
    biglaur Member Posts: 72 Member
    #7
    I still have my port
    I finished infusion chemo February '09. My onc told me I could have the port taken out this last appointment (April '10) but my regular doc says he's superstitious and likes them in for two years post treatment. That brings me to February next...think I'll have it taken out for a Christmas present to myself at the end of the year. I was stage IV...I only feel a tweek at the port site every now and then...usually when I'm golfing. The port flushes are needed every 4 weeks...it usually seems like they come every 10 days, but it's a good way to measure your distance away from chemo. Good luck Laurie
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    #8
    Sit down for this one! lol
    Ok, well, you will laugh @ how long I've had my port! I was diagnosed Oct 3, 2001. Port put in Oct 30, 2001. 6 weeks chemo and radiation, surgery Jan 22, 2002. More chemo and ileostomy until Sept 13, 2002 (I was stage 4 with liver mets). Declared all clear, dare I say CURED by my oncologist June 2007. I never had a recurrence, and haven't had chemo since the summer of 2002. I was told to get my port flushed every 4 months (I always had a good return, and never had any problems with it).

    Here's the shocker! I had it (FINALLY!) removed Oct 2009. Why? Well, because I honestly was waiting for that "other shoe to drop" and for me to need that dang port again. Fortunately, I didn't need it. The surgeon joked that if I looked closely on my collarbone, I could probably see his shoe print where he had to brace himself to finally get this bad boy removed, it was in there pretty good.

    So, the moral of the story is....have it removed when YOU feel comfortable doing it. Unless you're having problems with it, or the doctor feels it's bad to leave it in, do what feels best for you. I know plenty of people on here to had it removed immediately after their last chemo treatment. I also know plenty who still have it. So, bottom line is do what you feel best doing. This is one of those things that you will know when it's time.

    Happy healthy hugs to you!

    Stacy
  • hoya1973
    hoya1973 Member Posts: 37
    #9
    StacyGleaso said:

    Sit down for this one! lol
    Ok, well, you will laugh @ how long I've had my port! I was diagnosed Oct 3, 2001. Port put in Oct 30, 2001. 6 weeks chemo and radiation, surgery Jan 22, 2002. More chemo and ileostomy until Sept 13, 2002 (I was stage 4 with liver mets). Declared all clear, dare I say CURED by my oncologist June 2007. I never had a recurrence, and haven't had chemo since the summer of 2002. I was told to get my port flushed every 4 months (I always had a good return, and never had any problems with it).

    Here's the shocker! I had it (FINALLY!) removed Oct 2009. Why? Well, because I honestly was waiting for that "other shoe to drop" and for me to need that dang port again. Fortunately, I didn't need it. The surgeon joked that if I looked closely on my collarbone, I could probably see his shoe print where he had to brace himself to finally get this bad boy removed, it was in there pretty good.

    So, the moral of the story is....have it removed when YOU feel comfortable doing it. Unless you're having problems with it, or the doctor feels it's bad to leave it in, do what feels best for you. I know plenty of people on here to had it removed immediately after their last chemo treatment. I also know plenty who still have it. So, bottom line is do what you feel best doing. This is one of those things that you will know when it's time.

    Happy healthy hugs to you!

    Stacy

    Activity with a Port
    I have had my port (right) in for a month and was curious of the extent of physical activity that can be exerted, specifically swinging a golf club. I have been advised a normal swing would not be a concern but should an extra strong swing be avoided?
  • Lifeisajourney
    Lifeisajourney Member Posts: 216
    #10
    hoya1973 said:

    Activity with a Port
    I have had my port (right) in for a month and was curious of the extent of physical activity that can be exerted, specifically swinging a golf club. I have been advised a normal swing would not be a concern but should an extra strong swing be avoided?

    Swing away
    I think most activity would be ok, but I imagine it would hurt to have it hit directly. My daughters dog love to to jump on my lap and hug me, so I do watchout for that....
    Thanks to all for the replies. It is just one of those things on my mind and wondered if there was a protocal and it looks like I will leave well enough alone for awhile since there are no problems with it. Flushing is a pain, but I like seeing my nurses once in awhile. I only go every three months to see onc. now. I guess it is a personal decision and I think I'll hang on to it for awhile since it is a good one. Pat
  • Shayenne
    Shayenne Member Posts: 2,342
    #11
    Lifeisajourney said:

    Swing away
    I think most activity would be ok, but I imagine it would hurt to have it hit directly. My daughters dog love to to jump on my lap and hug me, so I do watchout for that....
    Thanks to all for the replies. It is just one of those things on my mind and wondered if there was a protocal and it looks like I will leave well enough alone for awhile since there are no problems with it. Flushing is a pain, but I like seeing my nurses once in awhile. I only go every three months to see onc. now. I guess it is a personal decision and I think I'll hang on to it for awhile since it is a good one. Pat

    I'll
    Be keeping mine in forever it seems. That's ok, any kind of hospital trip I have at least they can access the port, I'd be afraid of it coming out, thinking I may need it, and don't want them using my veins all the time, even if my port takes time to access now...it keeps getting clogged, so they need to keep putting that medicine in it for a 1/2 hour to make sure it gets unclogged. It flushes great, but won't give blood returns right away, unless they use that medicine.

    Hugsss!
    ~Donna
  • mnmassie
    mnmassie Member Posts: 7
    #12
    port removal
    had my CA treatments in 2006 (year I turned 50!but that's another subject) I kept my port 3 years because, in the beginning, my surgeon told me to. I became sort of attached to it. My treatments lasted basically all of 2006, and when they were over all I really got was a hug from my oncology nurse and a wish for a happy life. Yes, I still do my regular followups, etc. but there was a real feeling of being lost after all the attention I received during treatments. All of a sudden, no one was watching. Having a port in, I had to return to the safe haven of the oncology office 1 a month for port flush. Looking back a year later, it was like my security blanket! It was actually a real thought process to get up the courage to have the thing removed. Now I don't miss it at all! I figure if I need another one, I'll just have it put in and deal with it then...oh, well. Life goes on, and hopefully on, and on, and on........as someone else has said..I think it is really about when YOU are ready to do it.
    Good luck!
  • LisaStMary
    LisaStMary Member Posts: 1
    #13
    hoya1973 said:

    Activity with a Port
    I have had my port (right) in for a month and was curious of the extent of physical activity that can be exerted, specifically swinging a golf club. I have been advised a normal swing would not be a concern but should an extra strong swing be avoided?

    Your Port and Golf
    Hello Hoya 1973!

    Hope this finds you well and recovering, and certainly GOLFING!!! I am new to this site, but don't seem to think you got any answers to your question regarding golfing with your port. What did you find? I have a dear friend who has just had a pick line put in her arm so she can golf during chemo. She swings "out of her shoes" and there was some fear the port near her collarbone would damage the device when she drives the ball. A suggestion was made that it be put in just above the collar bone rather in that muscular area just below it. What did you end up doing? Any advice would be appreciated! And how's your game?

    Best Lisa
  • greybeard
    greybeard Member Posts: 24
    #14
    hoya1973 said:

    Activity with a Port
    I have had my port (right) in for a month and was curious of the extent of physical activity that can be exerted, specifically swinging a golf club. I have been advised a normal swing would not be a concern but should an extra strong swing be avoided?

    fellow golfer
    Hey this is one of the upsides to having a port, while it doesnt effect your swing at least mine hasnt, no one else knows that. you have a "built in" excuse, literally!
    Seriously I have had no problems with mine, I swing right handed port is on my left. Although Hockey is the opposite left handed shot and while I havent "laced them up" in QUITE awhile I have taken a few shots in the garage, call it a trip down memory lane and didnt notice anything as far as the port was concerned. so right or left with port on same side or opposite shouldnt be a problem, unless you need it to be for your "handicap" nudge, nudge, wink, wink! I should add by the way mine is just under the collar bone and has been for about four years when it was new I wasnt in the shape to play so....Good luck out there!
    chris
  • tiny one
    tiny one Member Posts: 465 Member
    #15
    port
    I wanted my port out as soon as could they take it out. My last chemo treatment was Oct 31, 2007. I had my reversal on Dec 21,2007. My port was taken out 2 weeks after. I wanted it gone as it was a visible reminder.
  • hoya1973
    hoya1973 Member Posts: 37
    #16
    tiny one said:

    port
    I wanted my port out as soon as could they take it out. My last chemo treatment was Oct 31, 2007. I had my reversal on Dec 21,2007. My port was taken out 2 weeks after. I wanted it gone as it was a visible reminder.

    Fore
    I have not played yet but will give my port a test on the range this week. It was installed 6 weeks ago. I swing too hard so maybe the port will help slow down my swing. Perhaps my game will improve? It dosen't matter I just need the distraction golf offers.
  • ninetoes
    ninetoes Member Posts: 81
    #17
    Ports
    It's up to you what you want to do. I had 2 ports during my chemo, after my 2nd chemo treatment I developed a blood clot. My 2nd port was fine and had no problems with it. My onc said he recommended keeping it for at least a year. I wanted it out right away, didn't want that reminder.
  • hoya1973
    hoya1973 Member Posts: 37
    #18
    ninetoes said:

    Ports
    It's up to you what you want to do. I had 2 ports during my chemo, after my 2nd chemo treatment I developed a blood clot. My 2nd port was fine and had no problems with it. My onc said he recommended keeping it for at least a year. I wanted it out right away, didn't want that reminder.

    Better Golf
    Well my drives did not go very far but I managed some nice shots after using longer irons than normal. I restricted my swing because of the port but did not have any problems in 9 holes. I plan on playing again soon as exercise helps with this battle....
  • menright
    menright Member Posts: 256 Member
    #19
    5years souds good
    I just finished liver resection surgery and I am glad to had the port. Alot less sticking this way.

    I will keep my for 5 years just in case more were to come.

    Mike
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #20
    Ports
    I've done 6 chemo treatments, all with oxy and last two Onc added avastin all through the veins.
    After all the vein pain I met with the surgeon on Friday and hopefully will get a port sometime next week. Or at least before my next chemo in two weeks.
  • Lifeisajourney
    Lifeisajourney Member Posts: 216
    #21
    herdizziness said:

    Ports
    I've done 6 chemo treatments, all with oxy and last two Onc added avastin all through the veins.
    After all the vein pain I met with the surgeon on Friday and hopefully will get a port sometime next week. Or at least before my next chemo in two weeks.

    Ports
    When I was diagnosed, I had surgery within two days and did little research, was in shock. So when they said I needed a port, that was like another hurdle, but I can't recommend anything more. I have always had bad veins and I can't imagine what chemo would have been like without the port, so I am sooo glad that there is such a thing. When I had the bad reaction to folfox and was in hospital for 10 days, I had blood and everything thru it, so I am attached to it. I think I will hang on to it for awhile and see what is ahead, even tho not everyone will access it for other things....... The surgery was pretty minor outpatient. Good decision to get one, I think...Pat

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