Chemotherapy Port
June 8, 2020 2:35 PM Subscribe
Someone very close to me has been diagnosed with cancer. I will be this person's primary caregiver throughout their treatment. They are starting chemotherapy shortly, and are scheduled to have a port inserted.
I am interested in your experience with this procedure. We've been told it will be done under conscious sedation. We'll be getting a lot of education at the hospital on caring for the site, etc. I'm interested in hearing about life with a port. My family member is a lifelong golfer and has heard, although not definitely, that golf is out with a port. Of course they may not feel like playing once treatment starts, but it would be nice if it were an option instead of one more thing they love that they're losing.
Please share your advice and experiences specifically with day of port insertion, pain/discomfort immediately following, and then living with it. I'd rather leave everything else relating to caring for a loved one with cancer for another day. Thank you.
I am interested in your experience with this procedure. We've been told it will be done under conscious sedation. We'll be getting a lot of education at the hospital on caring for the site, etc. I'm interested in hearing about life with a port. My family member is a lifelong golfer and has heard, although not definitely, that golf is out with a port. Of course they may not feel like playing once treatment starts, but it would be nice if it were an option instead of one more thing they love that they're losing.
Please share your advice and experiences specifically with day of port insertion, pain/discomfort immediately following, and then living with it. I'd rather leave everything else relating to caring for a loved one with cancer for another day. Thank you.
Best answer: I recovery really well from anthestisiaThat said, I had my subcutaneous port put in on Christmas eve. I was sore, but was able to participate in holiday activities that night and the following days.
I don't remember there being much care to the port or incision site. I do remember being thankful for it every single time I had blood draws, chemo ....I don't remember any difference in range of motion or being hindered by it in any way. I waited years after treatment to have it removed, the removal was oddly anticlimactic in office, took minutes and it was done.
I wish your partner good outcomes as they go through treatment.
posted by jennstra at 2:52 PM on June 8, 2020 [2 favorites]
I don't remember there being much care to the port or incision site. I do remember being thankful for it every single time I had blood draws, chemo ....I don't remember any difference in range of motion or being hindered by it in any way. I waited years after treatment to have it removed, the removal was oddly anticlimactic in office, took minutes and it was done.
I wish your partner good outcomes as they go through treatment.
posted by jennstra at 2:52 PM on June 8, 2020 [2 favorites]
Best answer: When my niece had her port installed in her late 20s, she was told the only things she shouldn't do were contact sports like football and rugby. My father had his installed when he was 80 and he was still bowling after, until he got too sick to do so.
I would also recommend finding a cancer support community. My mother never has, even though we've all begged her to, and she's been relying on me for support. It's fine, I get it, but it's really, really hard for me. I did find a supportive cancer community and it's made a world of difference.
Good luck and feel free to MeMail me if you have questions.
posted by cooker girl at 2:55 PM on June 8, 2020
I would also recommend finding a cancer support community. My mother never has, even though we've all begged her to, and she's been relying on me for support. It's fine, I get it, but it's really, really hard for me. I did find a supportive cancer community and it's made a world of difference.
Good luck and feel free to MeMail me if you have questions.
posted by cooker girl at 2:55 PM on June 8, 2020
Best answer: I had a port for 6 months or so. The gave me general anesthesia to put it in and take it out, but it was a short procedure. I loved my port. Every time they used it I was grateful they were not searching for a vein somewhere else. It takes almost no care once the initial wound has healed.
I was also asked to no participate in certain sports because it's attached at the jugular and wild arm movements or contact sports could dislodge it. Best not to go there.
posted by OHenryPacey at 3:00 PM on June 8, 2020
I was also asked to no participate in certain sports because it's attached at the jugular and wild arm movements or contact sports could dislodge it. Best not to go there.
posted by OHenryPacey at 3:00 PM on June 8, 2020
Best answer: I've had two Asks about ports, which might be helpful to you.
This is the first: Medical ports: shirts for access plus help me not freak out
This is the second: Fencing with a port
Now, to address your questions. The day of insertion was not too bad - they had to give me some injections that I found really painful, but most of it was OK. Pain from the surgery lasted way longer than I was led to expect - it was very painful for a day or two and pretty painful for at least a week (I don't remember exactly).
It was really hard for me emotionally to deal with. I have this very hard piece of plastic right near the surface of my skin. It felt like such a weird, foreign thing inside my body. I really hated that feeling and still do when I think about it. There is no way to pretend it's not there. However, over time, I've gotten more used to it and it doesn't bother me as much.
I don't know anything about golf, but as you can tell from my previous Ask, I'm a fencer, which means I get hit in the chest a lot, sometimes pretty hard. I put off getting a port for a very long time because I thought I would have to quit fencing. After looking at the answers I got about it. I decided to purchase the Paceguard, which someone suggested in response to my Ask. I made an appointment with interventional radiology at my cancer center and brought the Paceguard in to show the PA. He said he would have absolutely no qualms about me fencing with it. I was so surprised, I asked him three times, and he said it would be fine each time. And when I asked him if he'd ever seen someone have problems with a port due to trauma to the port area, he said no - nothing in the hundreds of ports he's been involved with. If your relative does get the Paceguard, the T shirt that holds it in place has a pocket that is not in the right place if you're covering a port. I took it to a tailor to have the pocket moved, so I was good to go. Unfortunately, COVID happened just as I was ready to get back to fencing, so I haven't had a chance to test it out. The Paceguard is meant to withstand hits to the chest with balls, so perhaps it would make golf possible (though as I said, I know nothing about golf, so I don't know what the issue is).
I am glad I got the port because I have unbelievably shitty veins and it has really taken a lot of the stress out of my infusions and blood draws. But I still kind of hate it.
Feel free to MeMail me if you have more questions.
posted by FencingGal at 3:02 PM on June 8, 2020 [4 favorites]
This is the first: Medical ports: shirts for access plus help me not freak out
This is the second: Fencing with a port
Now, to address your questions. The day of insertion was not too bad - they had to give me some injections that I found really painful, but most of it was OK. Pain from the surgery lasted way longer than I was led to expect - it was very painful for a day or two and pretty painful for at least a week (I don't remember exactly).
It was really hard for me emotionally to deal with. I have this very hard piece of plastic right near the surface of my skin. It felt like such a weird, foreign thing inside my body. I really hated that feeling and still do when I think about it. There is no way to pretend it's not there. However, over time, I've gotten more used to it and it doesn't bother me as much.
I don't know anything about golf, but as you can tell from my previous Ask, I'm a fencer, which means I get hit in the chest a lot, sometimes pretty hard. I put off getting a port for a very long time because I thought I would have to quit fencing. After looking at the answers I got about it. I decided to purchase the Paceguard, which someone suggested in response to my Ask. I made an appointment with interventional radiology at my cancer center and brought the Paceguard in to show the PA. He said he would have absolutely no qualms about me fencing with it. I was so surprised, I asked him three times, and he said it would be fine each time. And when I asked him if he'd ever seen someone have problems with a port due to trauma to the port area, he said no - nothing in the hundreds of ports he's been involved with. If your relative does get the Paceguard, the T shirt that holds it in place has a pocket that is not in the right place if you're covering a port. I took it to a tailor to have the pocket moved, so I was good to go. Unfortunately, COVID happened just as I was ready to get back to fencing, so I haven't had a chance to test it out. The Paceguard is meant to withstand hits to the chest with balls, so perhaps it would make golf possible (though as I said, I know nothing about golf, so I don't know what the issue is).
I am glad I got the port because I have unbelievably shitty veins and it has really taken a lot of the stress out of my infusions and blood draws. But I still kind of hate it.
Feel free to MeMail me if you have more questions.
posted by FencingGal at 3:02 PM on June 8, 2020 [4 favorites]
Best answer: My aunt had a port inserted before her last 2 years of chemo. She had insisted on peripheral IVs for a previous round a decade earlier, but the oncologist and his nurses persuaded her that a port would shorten her chemo sessions - the chemo can flow more quickly because it is flowing into a larger vein with more turbulent flow, the inferior vena cava, the large vein that flows into the right atrium of the heart. The port will be placed below the collar bone on the right side of the body. My aunt had a much more comfortable experience with the port.
In her case she had what I suspect was more anesthesia than conscious sedation when it was placed. She went to the OR and then the recovery unit, though I can't be absolutely certain what she was given. She received strict instructions NEVER to let anyone other than a certified oncology nurse access her port. When doing so they wear a mask, sterile gloves and needle, and cleanse the skin above the rubber "button" with sterile swabs and disinfectant. They will use a special sterile needle and tubing, and will withdraw several tubes of blood before every chemo session to assess her blood counts and electrolytes on-site in the office. Once or twice her counts were low and chemo was rescheduled and she received blood-count stimulating medications.
My aunt protected that port through several subsequent hospitalizations from over-zealous hospital staff, as she had poor veins and it was tempting to access it, but it is a real risk for infection if not accessed in a sterile manner by people who know what they are doing.
One last thing - piercing the skin and rubber membrane can hurt, and her oncologist prescribed a numbing cream, Emla I think, that she spread on her port and covered with a square of plastic wrap before her trip to the oncology appointments. This greatly reduced any pain and I recommend you ask about it. Good luck to you and your loved one.
posted by citygirl at 3:36 PM on June 8, 2020 [1 favorite]
In her case she had what I suspect was more anesthesia than conscious sedation when it was placed. She went to the OR and then the recovery unit, though I can't be absolutely certain what she was given. She received strict instructions NEVER to let anyone other than a certified oncology nurse access her port. When doing so they wear a mask, sterile gloves and needle, and cleanse the skin above the rubber "button" with sterile swabs and disinfectant. They will use a special sterile needle and tubing, and will withdraw several tubes of blood before every chemo session to assess her blood counts and electrolytes on-site in the office. Once or twice her counts were low and chemo was rescheduled and she received blood-count stimulating medications.
My aunt protected that port through several subsequent hospitalizations from over-zealous hospital staff, as she had poor veins and it was tempting to access it, but it is a real risk for infection if not accessed in a sterile manner by people who know what they are doing.
One last thing - piercing the skin and rubber membrane can hurt, and her oncologist prescribed a numbing cream, Emla I think, that she spread on her port and covered with a square of plastic wrap before her trip to the oncology appointments. This greatly reduced any pain and I recommend you ask about it. Good luck to you and your loved one.
posted by citygirl at 3:36 PM on June 8, 2020 [1 favorite]
Best answer: Around this time last year, my father in law had a port inserted (in his arm) for his chemotherapy. To describe him as an "avid golfer" would be an understatement.
Golf was off the table for the duration of his treatment, both to reduce the chance of disturbing the port, and because, well, chemo side effects. He said it was the first time he hadn't played golf in a season since he was 16 years old. So, not an easy call for him.
His chemo went well, and he's in remission. This season, his local golf course is open (with appropriate social distancing measures) this season, and he's back at it on a daily basis.
He had to take care to keep the port clean, but other than that he was glad to have it so he didn't need to be re-stuck multiple times.
posted by mandolin conspiracy at 3:42 PM on June 8, 2020 [1 favorite]
Golf was off the table for the duration of his treatment, both to reduce the chance of disturbing the port, and because, well, chemo side effects. He said it was the first time he hadn't played golf in a season since he was 16 years old. So, not an easy call for him.
His chemo went well, and he's in remission. This season, his local golf course is open (with appropriate social distancing measures) this season, and he's back at it on a daily basis.
He had to take care to keep the port clean, but other than that he was glad to have it so he didn't need to be re-stuck multiple times.
posted by mandolin conspiracy at 3:42 PM on June 8, 2020 [1 favorite]
Best answer: I wrote about my experience with a port on one of FencingGal’s previous posts, and I was pretty rosy and encouraging, which I stand by - I think avoiding a port sets you up for a lot of needless suffering when you get chemotherapy. To expand a bit on your specific questions:
Day of port insertion: Mine (a power port installed on my upper chest) was placed by an interventional radiologist under conscious sedation. The actual placement didn’t hurt, was a weird experience, but I remember it. It only took a few minutes: the doc placed a lot of them and was very skilled.
Pain/discomfort immediately following: It hurts like a motherfucker immediately after. Someone described it to me like getting hit in the chest with a baseball bat, and that seemed right. But it’s really localized pain, and it goes away after a few days. I went to work the next day or the day after (I work in an office) and it was fine. Not amazing, but fine.
Living with it: I was so happy not to be dealing with vein issues. I had to get chemo for a year, and I loved the port. I don’t think it is particularly delicate. I once fell out of crow pose during a yoga session right on to it, and it hurt, but no harm done. Day to day I didn’t notice it. Some people have stronger feelings about it. I would definitely ask the medical doctor placing the port about golf, but I wouldn’t assume it is not allowed or rely on hearsay.
posted by jeoc at 5:21 PM on June 8, 2020 [1 favorite]
Day of port insertion: Mine (a power port installed on my upper chest) was placed by an interventional radiologist under conscious sedation. The actual placement didn’t hurt, was a weird experience, but I remember it. It only took a few minutes: the doc placed a lot of them and was very skilled.
Pain/discomfort immediately following: It hurts like a motherfucker immediately after. Someone described it to me like getting hit in the chest with a baseball bat, and that seemed right. But it’s really localized pain, and it goes away after a few days. I went to work the next day or the day after (I work in an office) and it was fine. Not amazing, but fine.
Living with it: I was so happy not to be dealing with vein issues. I had to get chemo for a year, and I loved the port. I don’t think it is particularly delicate. I once fell out of crow pose during a yoga session right on to it, and it hurt, but no harm done. Day to day I didn’t notice it. Some people have stronger feelings about it. I would definitely ask the medical doctor placing the port about golf, but I wouldn’t assume it is not allowed or rely on hearsay.
posted by jeoc at 5:21 PM on June 8, 2020 [1 favorite]
Best answer: My port goes into the brachial artery. I had conscious sedation except I was pretty sleepy the day they did it so I fell asleep during it. It was mildly uncomfortable afterwards but the incision was small and healed easily. The biggest problem was that I had a habit of whacking myself with a fist on the sternum to clear phlegm so I could breath easier when I was coughing and several times in the first week or three I punched myself in the port which made me yelp from the pain.
I may have caused my port to tilt sideways from punching it because ever afterwards the nurse trying to find the centre so he could spike the needle in would have to feel around and had trouble finding all three of the little knoblings to be certain where the centre is. When they spike you with the port the needle going is is short and thick so it hurts. Of course the thin skin around the sternum is very pain sensitive - one way to test how deeply unconscious someone is, is to run your knuckle hard over their sternum. It can't damage them but unless they are flat out totally they will feel it and show some pain. So it hurts when the needle goes in, but not enough to worry me or make me dread it for more than three seconds after I am already in the chair and the nurse is unpacking the kit and tearing the spike part out of its sterile paper package. Where I live only RN's who have taken the port course and gotten the certificate are allowed to use it, but there are a lot of RN's in the oncology department who have that course so I've never had to wait more than a few minutes for them to find one when they want to take blood.
I had radiation after chemo and surgery and that resulted in lymphedema on one side so they are not supposed to ever use the veins and arteries on that side, and they need to avoid using the other side in case it develops there too so it is handy to have a port they can use instead.
Very soon after the chemo was done I asked my oncologist if I could have the port out because the darned thing was uncomfortable and kept moving around between the skin and the muscle in my chest wall but she said no. So then I had surgery and radiation and after all that was done some months later she said I could have it out. Of course it had stopped hurting by then as I finally developed a crater in the surface of the pectoral muscle that cradles it, so at that point I was quite happy to keep it, and there it sits, indefinitely. I may never get it out since I never have to and it may be useful. They still use it when they want to take several test tubes of blood out. I am supposed to get it flushed monthly and we keep missing flushes - I haven't been flushed since February. If it ever does clog they'll take it out.
Much depends on what artery they use or what vein. Some areas where they put them are more uncomfortable than others. I'm surprised to hear that your patient won't be allowed to play golf with one, given that mine survived being punched multiple times, but that could be because they don't want him doing wild swings that would make it move when it is newly in his arm. You'll want to ask carefully about that and find out, in case "No, no, you can't play golf after we put the port in!" means he can putt but not take great big swings, or that he has to wait until chemo is done, or wait until the surgeon who puts it in clears him. It might not be as bad as no golf ever until they take it out.
posted by Jane the Brown at 7:41 PM on June 8, 2020
I may have caused my port to tilt sideways from punching it because ever afterwards the nurse trying to find the centre so he could spike the needle in would have to feel around and had trouble finding all three of the little knoblings to be certain where the centre is. When they spike you with the port the needle going is is short and thick so it hurts. Of course the thin skin around the sternum is very pain sensitive - one way to test how deeply unconscious someone is, is to run your knuckle hard over their sternum. It can't damage them but unless they are flat out totally they will feel it and show some pain. So it hurts when the needle goes in, but not enough to worry me or make me dread it for more than three seconds after I am already in the chair and the nurse is unpacking the kit and tearing the spike part out of its sterile paper package. Where I live only RN's who have taken the port course and gotten the certificate are allowed to use it, but there are a lot of RN's in the oncology department who have that course so I've never had to wait more than a few minutes for them to find one when they want to take blood.
I had radiation after chemo and surgery and that resulted in lymphedema on one side so they are not supposed to ever use the veins and arteries on that side, and they need to avoid using the other side in case it develops there too so it is handy to have a port they can use instead.
Very soon after the chemo was done I asked my oncologist if I could have the port out because the darned thing was uncomfortable and kept moving around between the skin and the muscle in my chest wall but she said no. So then I had surgery and radiation and after all that was done some months later she said I could have it out. Of course it had stopped hurting by then as I finally developed a crater in the surface of the pectoral muscle that cradles it, so at that point I was quite happy to keep it, and there it sits, indefinitely. I may never get it out since I never have to and it may be useful. They still use it when they want to take several test tubes of blood out. I am supposed to get it flushed monthly and we keep missing flushes - I haven't been flushed since February. If it ever does clog they'll take it out.
Much depends on what artery they use or what vein. Some areas where they put them are more uncomfortable than others. I'm surprised to hear that your patient won't be allowed to play golf with one, given that mine survived being punched multiple times, but that could be because they don't want him doing wild swings that would make it move when it is newly in his arm. You'll want to ask carefully about that and find out, in case "No, no, you can't play golf after we put the port in!" means he can putt but not take great big swings, or that he has to wait until chemo is done, or wait until the surgeon who puts it in clears him. It might not be as bad as no golf ever until they take it out.
posted by Jane the Brown at 7:41 PM on June 8, 2020
Best answer: I've had a port since September - I could definitely play golf. It was sore for a couple of weeks but I was lifting a 30lb toddler after 1 week. I was totally nervous about getting it but it's surprisingly not a big deal.
The insertion was not bad - I think it was conscious sedation but I don't remember anything. I was done before noon - it was sore but I walked a couple of miles the day I had it done. Parenting a toddler is pretty unforgiving in terms of getting things bumped, hit, jumped on, etc but it's been fine. I would go in with the expectation of taking a month off golf and building up from there. I think I took a month off more intense yoga just to be safe. My advice in general is to try to maintain as many usual activities as possible because they motivate you to keep living!
posted by beyond_pink at 2:29 AM on June 9, 2020
The insertion was not bad - I think it was conscious sedation but I don't remember anything. I was done before noon - it was sore but I walked a couple of miles the day I had it done. Parenting a toddler is pretty unforgiving in terms of getting things bumped, hit, jumped on, etc but it's been fine. I would go in with the expectation of taking a month off golf and building up from there. I think I took a month off more intense yoga just to be safe. My advice in general is to try to maintain as many usual activities as possible because they motivate you to keep living!
posted by beyond_pink at 2:29 AM on June 9, 2020
Best answer: I work for a cancer treatment center and schedule these for patients all the time. Very common procedure. The issue with golfing and other physical sports but especially those which involve so much movement of the arms if the issue of the port shifting and not working properly because it gets "obstructed". Most everyday things would not be an issue though. Basic care and treatment is minimal besides keeping the area clean, and periodically every 6 weeks having it "flushed out" where they just run saline through it to ensure it's still working properly if it hasn't been used in that period of time. Some people only have it for the duration of chemo treatment -- others keep it for a year or so afterwards just in case there is a sign rate of return or they have to go back every 3 months or so to have labs done and they are historically a hard stick.
posted by Sara_NOT_Sarah at 11:39 AM on June 9, 2020 [1 favorite]
posted by Sara_NOT_Sarah at 11:39 AM on June 9, 2020 [1 favorite]
Response by poster: I am very grateful to everyone who took the time to share their experiences. You made a very difficult time a little easier for us and I thank you.
posted by Kangaroo at 4:58 PM on June 9, 2020 [1 favorite]
posted by Kangaroo at 4:58 PM on June 9, 2020 [1 favorite]
This thread is closed to new comments.
posted by trbrts at 2:50 PM on June 8, 2020 [1 favorite]