Port placement tomorrow- any advice?

lizard44
lizard44 Member Posts: 409 Member

I haven't posted   in a few weeks but have been reading and learning from the   vast amount of knowledge you folks have shared here. Since  my last post, I've met with  the clinical oncologist, had a PET scan, met with the radiation oncologist and am now scheduled to have a port put in tomorrow morning. One of the spots that showed up on my liver in the CT scan  glowed brighly on the PET scan, so this is stage IV rectal cancer with liver mets. I'm scheduled  to get  neoadjuvant chemotherapy with 5-FU via an infusion pump  Monday through Friday for  5 1/2  or 6 weeks, and radiation therapy at the same time in an attempt to shrink the tumor, with surgery to follow later. After looking at the scan results and doing  DREs, both the surgeon and the oncologist  see little hope of saving the anal sphincter, so  I'll probably have a permanent  colostomy.  After reading  some of  your experiences with colostomies, that may not be so bad and should save me a small fortune in toilet tissue! :-D Meanwhile,  I have warned the doctors  that I cannot be held resposible for  any injuries I might cause to the next one of them who approaches me wearing a lubricated latex glove!

But back to the port . . Since I  usually do better  the more I know about what's about to happen, a week or so ago I foolishly watched a video of exactly how  it's done.  That was definitley a BIG mistake! Yikes!  I've calmed down now and convinced myself that despite my trepidations, the port  will definitely be better than  a kazillion needle sticks. From what I've read,  there might be some soreness and stiffness for a few days after the port is  placed, so today I'm trying to catch up on ironing and other yukky tasks that might be more difficult later on.  Is there anything else I should expect  as far as  soreness, pain, etc. from the placement.  I am also a little concerned that I have a very bony chest- I meant to ask the doctor, but forgot last time I talked to him- is not having much natural fat/padding a good thing or a bad thing as far as the port is concerned?  I am trying to gain weight in anticipation of all the adventures to come, but it's slow going.  Thanks for any info you can share.

Grace

Comments

  • sflgirl
    sflgirl Member Posts: 220 Member
    Do not worry

    Everything Sue said is right. I was in twilight sleep and it was easy.  

    I am also lacking a lot of body fat but it doesn't seem to matter at all, you'll be fine.  It's just a bump under your skin which will be more noticeable to you than anyone else.  You will be grateful to bypass all the arm, wrist and elbow sticks.  

     

    Best to you and keep us posted.

    Andrea

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    The port is a HUGE blessing

    If it gets placed perfectly, then you will fall in love with your port. Especially if you watch some of those who do not have ports, getting stuck several times as their nurses try to find a vein. 

    They will put you out for the procedure, so no problems there. Just go to sleep and dream of something nice. 

    Ask the surgeon to place the port so that it does NOT sit under the bra strap. I didn't know you could ask anything, and thus, spent many months either not wearing a bra or wearing one and being uncomfortable. 

    Don't be scared by the freakish way it looks sitting under your skin. Be proud. I pray (feverently) that I NEVER have to have another one, but if I do, I would rather it be visible and people wonder if I have an alien growing out of my skin, than have it under my bra strap. 

    Be good to yourself for several days after getting it placed. It will bruise. It will pull. Don't be lifting or stretching. Let it heal and settle in your chest. I had a friend who did some gardening right after (within days) of getting her port. She pulled it out of place, and the nurses had a devil of a time accessing it at every chemo. 

    And, when you start radiation, be sure and ask for advice, because for some it can be a journey to Hell and back (that would be me), and for others, they just breeze through it. Either way, its best to be prepared. 

    Good luck!

    Sue - Trubrit

  • lizard44
    lizard44 Member Posts: 409 Member
    sflgirl said:

    Do not worry

    Everything Sue said is right. I was in twilight sleep and it was easy.  

    I am also lacking a lot of body fat but it doesn't seem to matter at all, you'll be fine.  It's just a bump under your skin which will be more noticeable to you than anyone else.  You will be grateful to bypass all the arm, wrist and elbow sticks.  

     

    Best to you and keep us posted.

    Andrea

    Thanks!

    Thanks, Sue and Andrea.  I'm not exactly looking forward to  tomorrow's procedure, but not dreading it quite as much, either. Will let you know how it goes.

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    Port placement

    When I finally got my port (after I blew all my veins) I never even thought about placement.  I used a surgeon that my Oncologist recommended as one who had done hundreds of ports, and frankly I didn't know how far it would stick out, exactly how it would be done (to squeamish to look at videos, I've had three c-sections and still don't know how or what they do) so, I think it's quite wise that you asked, unlike myself in my ignorance.  

    However, my port placement turned out great, have never had a problem with bra or seatbelt, felt fine the next day and have been very pleased with it, thank goodness for a good surgeon with great experience on port placement, I think that makes quite a difference in how it could have been.

    I have had this port for over 5 years now, and many times have had to have chemo once a week, which is quite a lot of accessing of the port, (I'm on once a week again)when my port was placed I was heavy and you had to feel for it, now I'm 106 pounds and the port can be seen quite clearly, even the "hose" (it's been two hours or so since I wrote this and just now chemo brain cleared up for a minute so now I can say the "TUBING" )or whatever it's called that goes to the artery can be seen when I'm not wearing a top, the placement has been so good though it doesn't even show when wearing a t-shirt or halter type tops.

    I "slept" through the surgery done at the hospital, go in the morning, get prepped, go home after recovery room time is over.  Easy peasy.  

    Here's to yours being a great placement and painless recovery.  

    Will be thinking of you tomorrow and wishing the best through your time with this nasty arsed cancer.

    Winter Marie

  • Trubrit
    Trubrit Member Posts: 5,796 Member

    Port placement

    When I finally got my port (after I blew all my veins) I never even thought about placement.  I used a surgeon that my Oncologist recommended as one who had done hundreds of ports, and frankly I didn't know how far it would stick out, exactly how it would be done (to squeamish to look at videos, I've had three c-sections and still don't know how or what they do) so, I think it's quite wise that you asked, unlike myself in my ignorance.  

    However, my port placement turned out great, have never had a problem with bra or seatbelt, felt fine the next day and have been very pleased with it, thank goodness for a good surgeon with great experience on port placement, I think that makes quite a difference in how it could have been.

    I have had this port for over 5 years now, and many times have had to have chemo once a week, which is quite a lot of accessing of the port, (I'm on once a week again)when my port was placed I was heavy and you had to feel for it, now I'm 106 pounds and the port can be seen quite clearly, even the "hose" (it's been two hours or so since I wrote this and just now chemo brain cleared up for a minute so now I can say the "TUBING" )or whatever it's called that goes to the artery can be seen when I'm not wearing a top, the placement has been so good though it doesn't even show when wearing a t-shirt or halter type tops.

    I "slept" through the surgery done at the hospital, go in the morning, get prepped, go home after recovery room time is over.  Easy peasy.  

    Here's to yours being a great placement and painless recovery.  

    Will be thinking of you tomorrow and wishing the best through your time with this nasty arsed cancer.

    Winter Marie

    Its called a Catheter...

    but I think Hose is perfect; in fact I really like hose. Gushing chemo all through the body, just like a garden hose gushing water throughout your yard. 

    Sue - Trubrit

  • Helen321
    Helen321 Member Posts: 1,459 Member
    The port is the best

    The port is the best invention ever, you'll be under and all you need is tylenol, good to go.  Easy peasy.  Taking it out even easier.  Pain is very minimum.  It's not the needle sticks that get you, you still get those in the port.  Chemo is killer on the veins in your arms, all kinds of swelling.  So glad I had a port put in.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    Helen321 said:

    The port is the best

    The port is the best invention ever, you'll be under and all you need is tylenol, good to go.  Easy peasy.  Taking it out even easier.  Pain is very minimum.  It's not the needle sticks that get you, you still get those in the port.  Chemo is killer on the veins in your arms, all kinds of swelling.  So glad I had a port put in.

    I hated my port until I was

    I hated my port until I was in the hospital this last time for the blood clot and had to have IVs for months. Chemo shrinks your veins and I had small ones to start with. I still have scars from attempts to place an IV before they got smart and used the port. Then it was easy. They could even take blood tests from me through it and not wake me up. I was so glad I had it.

  • lizard44
    lizard44 Member Posts: 409 Member
    JanJan63 said:

    I hated my port until I was

    I hated my port until I was in the hospital this last time for the blood clot and had to have IVs for months. Chemo shrinks your veins and I had small ones to start with. I still have scars from attempts to place an IV before they got smart and used the port. Then it was easy. They could even take blood tests from me through it and not wake me up. I was so glad I had it.

    The port is in!

    Had the procedure this morning and all went well. Or so I'm told ;-)  I was  out like a light in no time after getting on the table and woke up in the recovery area.  My port is on the left side and it does hurt a little to  use my left arm so I'm using my right hand more.  Since I'm left handed, I may end up with the addtional benefit of becoming ambidextrous :-)  When I called the clinical oncologist's office today to let them know that the port was in, they told me there's been a change in the treatment plan.  They are giving me a week to recover from the placement, then instead of running the chemo and radiation concurrently, five days a week, as previously planned, they are putting off the radiation for a while, and having me go in for an infusion of a  3 combo chemo a week from Wednesday,   then  I'll wear the infusion pump with the 5-FU for 48 hours,  and have it removed on Friday.  Then I'll have a week off to recover and  begin again with the Wed. through Friday plan. I have no idea what prompted the change unless it was the fact that I've lost more weight and now weigh less than 80 lbs, plus the results of the PET scan shows more involvement than they had originally thought. I'll know more after talking to the oncologist  next Wednesday. I  had prepped my mind for the five or so weeks of the five day chemoradiation, I guess I'll have to reset my mind switches again! This is sort of like a  combination roller coaster/barrell race with  ups, downs and obstacles. Should be quite a challenge to keep up with it all.

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    lizard44 said:

    The port is in!

    Had the procedure this morning and all went well. Or so I'm told ;-)  I was  out like a light in no time after getting on the table and woke up in the recovery area.  My port is on the left side and it does hurt a little to  use my left arm so I'm using my right hand more.  Since I'm left handed, I may end up with the addtional benefit of becoming ambidextrous :-)  When I called the clinical oncologist's office today to let them know that the port was in, they told me there's been a change in the treatment plan.  They are giving me a week to recover from the placement, then instead of running the chemo and radiation concurrently, five days a week, as previously planned, they are putting off the radiation for a while, and having me go in for an infusion of a  3 combo chemo a week from Wednesday,   then  I'll wear the infusion pump with the 5-FU for 48 hours,  and have it removed on Friday.  Then I'll have a week off to recover and  begin again with the Wed. through Friday plan. I have no idea what prompted the change unless it was the fact that I've lost more weight and now weigh less than 80 lbs, plus the results of the PET scan shows more involvement than they had originally thought. I'll know more after talking to the oncologist  next Wednesday. I  had prepped my mind for the five or so weeks of the five day chemoradiation, I guess I'll have to reset my mind switches again! This is sort of like a  combination roller coaster/barrell race with  ups, downs and obstacles. Should be quite a challenge to keep up with it all.

    YAY!

    I'm glad you breezed (or slept) through the procedure, and now have your port. 

    You will be able to function with your left side real soon, just don't overdo it to start with. 

    Sounds like you are going to be on the schedule that I was on. Make the most of it, cause radiation can be a bear. 

    I do so hope that you can gain some weight. 80 lbs isn't much to start off with. 

    Thinking of you. 

    Sue - Trubrit

  • MAliceR
    MAliceR Member Posts: 98
    lizard44 said:

    The port is in!

    Had the procedure this morning and all went well. Or so I'm told ;-)  I was  out like a light in no time after getting on the table and woke up in the recovery area.  My port is on the left side and it does hurt a little to  use my left arm so I'm using my right hand more.  Since I'm left handed, I may end up with the addtional benefit of becoming ambidextrous :-)  When I called the clinical oncologist's office today to let them know that the port was in, they told me there's been a change in the treatment plan.  They are giving me a week to recover from the placement, then instead of running the chemo and radiation concurrently, five days a week, as previously planned, they are putting off the radiation for a while, and having me go in for an infusion of a  3 combo chemo a week from Wednesday,   then  I'll wear the infusion pump with the 5-FU for 48 hours,  and have it removed on Friday.  Then I'll have a week off to recover and  begin again with the Wed. through Friday plan. I have no idea what prompted the change unless it was the fact that I've lost more weight and now weigh less than 80 lbs, plus the results of the PET scan shows more involvement than they had originally thought. I'll know more after talking to the oncologist  next Wednesday. I  had prepped my mind for the five or so weeks of the five day chemoradiation, I guess I'll have to reset my mind switches again! This is sort of like a  combination roller coaster/barrell race with  ups, downs and obstacles. Should be quite a challenge to keep up with it all.

    Port and chemo Thoughts

    Hi there, I am glad your port placement went well. I second and third everyone who says ports are the way to go. It took me about a week to get over the slight soreness, but my Oncologist also waited 9 days for me to heal before starting the first infusion into the port. I was glad. When I was first diagnosed, I had surgery followed by what turned out to be 8 months of chemo, an infusion, followed by 2 weeks of pills, rest a week and start over and do it again...My oncologist at the time didn't order a port so I had each infusion in my arm. By the end, my veins were so stripped that at the last infusion the chemo broke through my vein and burned all along my arm under the skin. It was really painful and took a long time to heal. 3 years later I still can't have any blood work done in that arm. When I had my recurrence, my new oncologist didn't even give me an option. She ordered a port. I also had the Wednesday through Friday infusion followed by the pump for 48 hours and a week off. I did it for 6 months. It was long and grueling as we all know chemo is, but the port was the shining star in the whole thing. It worked well, was never sore or uncomfortable and I would never do chemo again if it became necessary with anything but a port. Which I guess is one of the reasons I refuse to have it removed. So far I am just having it flushed every 6 weeks and leaving it where it is. At 58 I don't wear a lot of low cut necklines and if I do wear a bathing suit or something I just figure....who cares? My port, although my oncologist and therapist both think I should have it removed has become my security blanket for awhile.

    Good luck with your treatment. When I first had my recurrence, the original plan was the 5 day a week for 5-6 weeks plan and they changed their minds with me too. When I asked why, my oncologist felt that the longer time for infusion, over 6 months rather then 5 to 6 weeks might give me a better long term chance against another recurrence. Maybe that is why your Dr changed things as well. I am currently (knock on wood) cancer free. 

    I am not sure if you have had a pump before. If you haven't, I suggest right from the start you ask for a fanny pack style holder rather then a cross shoulder model. They gave me an over shoulder holder for the first infusion and pump session and it was difficult to navigate, I never could figure out how to roll over with it at night. As an FYI I also covered the little window on the holder so the flashing lights wouldn't be a bother at night. Funny, the first night I woke up and saw these red and blue lights on my ceiling and thought the police were outside. Honestly, since I was going to be wearing the pump for 3 days on a regular basis, I ended up designing and stitching up a variety of pump bags sort of like fanny packs. they worked great. The plan was to be fahionable when I wore them out. That went out the window when I discovered I didn't feel like spending much time out of bed let alone being out and about while hooked up. The plus is that I had the pump removed each Friday and by Friday night was able to eat a light dinner and by Saturday could begin to walk a few blocks to rebuild my strength up for the next time.

    Hang in there. You can get through this. Focus on the end game...shrinking those tumors. 

    Blessings!

    MAlice

  • lizard44
    lizard44 Member Posts: 409 Member
    MAliceR said:

    Port and chemo Thoughts

    Hi there, I am glad your port placement went well. I second and third everyone who says ports are the way to go. It took me about a week to get over the slight soreness, but my Oncologist also waited 9 days for me to heal before starting the first infusion into the port. I was glad. When I was first diagnosed, I had surgery followed by what turned out to be 8 months of chemo, an infusion, followed by 2 weeks of pills, rest a week and start over and do it again...My oncologist at the time didn't order a port so I had each infusion in my arm. By the end, my veins were so stripped that at the last infusion the chemo broke through my vein and burned all along my arm under the skin. It was really painful and took a long time to heal. 3 years later I still can't have any blood work done in that arm. When I had my recurrence, my new oncologist didn't even give me an option. She ordered a port. I also had the Wednesday through Friday infusion followed by the pump for 48 hours and a week off. I did it for 6 months. It was long and grueling as we all know chemo is, but the port was the shining star in the whole thing. It worked well, was never sore or uncomfortable and I would never do chemo again if it became necessary with anything but a port. Which I guess is one of the reasons I refuse to have it removed. So far I am just having it flushed every 6 weeks and leaving it where it is. At 58 I don't wear a lot of low cut necklines and if I do wear a bathing suit or something I just figure....who cares? My port, although my oncologist and therapist both think I should have it removed has become my security blanket for awhile.

    Good luck with your treatment. When I first had my recurrence, the original plan was the 5 day a week for 5-6 weeks plan and they changed their minds with me too. When I asked why, my oncologist felt that the longer time for infusion, over 6 months rather then 5 to 6 weeks might give me a better long term chance against another recurrence. Maybe that is why your Dr changed things as well. I am currently (knock on wood) cancer free. 

    I am not sure if you have had a pump before. If you haven't, I suggest right from the start you ask for a fanny pack style holder rather then a cross shoulder model. They gave me an over shoulder holder for the first infusion and pump session and it was difficult to navigate, I never could figure out how to roll over with it at night. As an FYI I also covered the little window on the holder so the flashing lights wouldn't be a bother at night. Funny, the first night I woke up and saw these red and blue lights on my ceiling and thought the police were outside. Honestly, since I was going to be wearing the pump for 3 days on a regular basis, I ended up designing and stitching up a variety of pump bags sort of like fanny packs. they worked great. The plan was to be fahionable when I wore them out. That went out the window when I discovered I didn't feel like spending much time out of bed let alone being out and about while hooked up. The plus is that I had the pump removed each Friday and by Friday night was able to eat a light dinner and by Saturday could begin to walk a few blocks to rebuild my strength up for the next time.

    Hang in there. You can get through this. Focus on the end game...shrinking those tumors. 

    Blessings!

    MAlice

    Fanny pack sounds like a great idea

    Thanks, MAlice for the suggestion.  With my scoliosis, I'm not sure how I'd do with an over the shoulder  setup, so I'll make sure  to ask for the fanny pack. 

    I tlked to the oncologist  yesterday.  She said she and the radiation oncologist had gone over  my PET scan  and felt that since the spot on  the liver, which they had thought might be benign, lit up like a Christmas tree,  the liver mets called for a more aggressive chemo approach, with te radiation put on the back burner for the time being.

    This new regimen doesn't sound like it will be much fun, but just knowing that several of you have gone through it and are doing well makes me hopeful that my experience with the chemo will  be similarly successful.

  • NewHere
    NewHere Member Posts: 1,427 Member
    lizard44 said:

    Fanny pack sounds like a great idea

    Thanks, MAlice for the suggestion.  With my scoliosis, I'm not sure how I'd do with an over the shoulder  setup, so I'll make sure  to ask for the fanny pack. 

    I tlked to the oncologist  yesterday.  She said she and the radiation oncologist had gone over  my PET scan  and felt that since the spot on  the liver, which they had thought might be benign, lit up like a Christmas tree,  the liver mets called for a more aggressive chemo approach, with te radiation put on the back burner for the time being.

    This new regimen doesn't sound like it will be much fun, but just knowing that several of you have gone through it and are doing well makes me hopeful that my experience with the chemo will  be similarly successful.

    I Am Through 5 Sessions

    Of Folfox.  As I tell people (due to my sense of humor), it is not on the Top 10 list of things I would recommend trying, but it is really doable so far.  I have some reactions, the big one being tired, specifically the two days after the disconnect where I sleep a lot, it is doable. The tired for me is feeling sluggish, so doing the chill thing (which is not my personality :)) for a few days is something I am getting used to.  So I watch TV more than normal for a week every two weeks with some naps.  

    Let's put it this way, before getting cancer and starting chemo it was the great unknown and the boogeyman.  Dealing with it now, the surgery and chemo, it is "not such a big deal."  People all will react differently, but one wish I have for everyone is that they have the same experience that I have had with my chemo so far.  It is really no big deal. Well it is, but totally doable and not a horror show.  I tell people who ask it is more annoying than anything else.

    I also have the non-battery pump system, which helps. Works on body heat and no noise whatsoever.

    Best wishes in this all...