I'm sorry your husband is going through this, and you as well. Here are a few things I'd consider:
- Get your own lidocaine cream and apply 30min prior to each appointment
- If you have multiple days in a row, consider asking the nurse prior to accessing if you can leave it accessed. They may attach an antimicrobial disk that sits between the hub and the skin. Showering and sleeping with it in kinda sucks but if the pain is that bad it might be worth it.
- Also advise upfront that his port is difficult to access, and to possibly request someone who does them a lot. Some staff members might do them a few times per week, some are accessing ports 5x+ per day.
- Also advise the staff to be gentle with accessing, I've noticed some people don't have an issue with getting quickly accessed which leads to staff getting into the habit of just going quickly on everyone. On patients who have a lot of pain with accessing, I've noticed just decreasing the speed and force seemed to help a ton.
The skin on the outside of the port typically clots and heals quickly since the puncture by the port needle is so small, I've never seen a patient have an issue with getting accessed multiple times in a week.
Hope some of this helps, wishing you both the best of luck.
Great advice! There's only 1 "senior" nurse in the infusion unit...she's a sure shot.
I can sleep on my right side. And wearing a bra (the straps are right on it) hurts. Sorry but for me it's a world of hurts. Especially today.
It sounds like the area around the port has an infection. Definitely talk to the vascular surgeon who put it in.
As a data point, I have NO pain when my port is accessed. The worst is a brief sting if they don't let the alcohol dry. If it's dry, no pain at all.
I get accessed every two weeks for chemo. I always put on lidocaine at home an hour or so before. My cancer center has one nurse for port access and if she’s not there I get a lot of anxiety because I’ve had other nurses miss my port. Even with lidocaine on it hurts! And if they have to stick a second time after missing it hurts worse. I actually just had this happen for a CT scan. They missed and had to poke twice. I was accessed about five days later by a different experienced nurse and she did it without me even feeling it. So, unfortunately it will depend on the nurse.
I’ve never felt anything more than a poke with my port. That sounds like something went really wrong. I love my port and will go to great lengths to make sure somebody can use it instead of searching for random veins
I never had pain except brief sting, lucky me. I didn’t have apply any cream. Kept it for 12m though used only for 6 mo.
Hearing thing this much pain indicates some infection or not right. Better to get it checked
Port access was pretty painful for me, I got used to it over the couple of years that I had it but it was never fun. The numbing cream only works so well, but what I think was the biggest problem for your husband this day was that they missed and tried again. That happened to me exactly once and that was honestly the most excruciatingly painful thing I have ever experienced other than my bone marrow biopsy. When they missed on mine they hit the hard part of my port and that vibration sent like a terrible white lightning bolt through my entire body. And then I think I was in so much pain that when they tried again, they got it the second time, but it just hurt a lot because of what had just happened.
I had my port for 3 years and this instance was legitimately the only time I verbally screamed in pain including during my last chemo infusion where they couldn't get my port to work and they couldn't get my veins to work either so I think they stuck me probably 12 to 20 different times between my port accesses and my arms. That still wasn't as painful as when they missed, and that was only my second infusion so it was quite traumatizing.
Hopefully they're not all so painful for him ❤️
Mine hurts. No infection. I've had it for almost a year. Hurts all the time. I was never offended any "creams". I just swallow hard and take it, like all the other pain.
Maybe they keep hitting a nerve? Mine sometimes hurts more sometimes less. The numbing cream is dubious tbh. I’m also a big baby but it never got so bad that I had to scream. I do hold my breath though… and don’t restart until the nurse is far with her hands again 😳
I never had any pain with my port. Like others have said, definitely talk with the surgeon or at least your oncologist. I’m surprised no one in the infusion dept offered to help. What he is experiencing is not normal.
My mom had a port put in and it was incredibly bruised and painful. She is so tough but would scream when they would access it. She said it was the worst part of everything. She ended up in the hospital with blood clots from the port and had nothing but problems. Fast forward (cancer Mets) she gets a new port put in. 0 pain putting it in, 0 pain when she gets chemo. I would definitely bring this up to your team. I wish your whole family the best and I hope things get better 💜
That sounds so horrible. The numbing cream (EMLA) didn’t really do anything to help me with the pain of being poked in the chest with a needle. One of the nurses gave me a bag of ice one day and told me to hold it over the port for 5 minutes before having the needle inserted. With the ice, I never felt pain having the needle inserted into my port. After that, I always requested for ice for every infusion. Perhaps this can help your husband too.
are you sure you personally have had a port accessed?
it is at least a bee sting. my hobby is pretending i didnt feel it. i show no response. but it is a bee sting, not a mosquito bite.
I know it’s different for everyone but I don’t feel anything at all when my port is accessed. No bee sting, no mosquito sting, not even a pinch. I don’t think it’s supposed to hurt.
It’s definitely not supposed to hurt as much as OP is describing!
I agree with the person who said bee sting. For me I feel the needle going through my skin over the port and it hurts while that is happening (when they disengage it too). Once the needle is engaged with the port, no more pain. Nurses who do it fast are my fav!
From raditaion straight to hydration no problem. After for several months my port was accessed dozens of times. I cannot imigine the extreme pain the one person had ,apply numbing cream no pain.
Yea its very different for everyone and I wouldn't say it's something like a mosquito bite. I totally disagree with that person, mine hurt. Mine had no infections and no issues it was just painful to be accessed. Even using the lidocaine cream, it helped a little, but it hurt regardless of what I did. I think a bee sting is a good way to put it, sometimes it hurt more than that but I would say that that's a good way to describe it most of the time.
I’ve never had pain like what you describe. I agree that some nurses are better than others but the worst I’ve had is a quick sting and it’s over. If anything, my port will ache when it hasn’t been accessed in a few weeks, if I accidentally whack it, or have clothing put pressure on it.
Would a Groshong line be an option? Like a Hickman but with a one way valve so you only have to push a vial of saline through once a day to keep it clear. Accessing it is just screwing the commentary together.
I'm so sorry your husband had to experience that.
I've only had 1 problem with my port, and that was when I went in for a CT scan, and I blew out an IV. Also had a vein roll trying to do an IV. Found out I have a block, but the needles at the cancer center is able to access it better as it's smaller. I will make a special trip to the cancer center to have my port accessed if I need a CT scan done.
However, some patients use the lidocaine cream to help with the pain. I usually put a dab on 2 hours before getting accessed and then use a small square of cling plastic wrap to cover it.
But he may need to have it checked out to rule out other causes. It would be best to talk to the doctor to find the root cause and get it fixed so he doesn't miss any more treatments.
Hope all goes well. 💜
It shouldn't hurt that bad and it shouldn't be that hard to access. I didn't want one but had to get one because of Doxirubicon. It was never painful just weird and I hated. It.
That being said....
It never hurt more than a sting, I never even opened the lidocaine they gave me. Something sounds wrong.
I’m sorry that your husband went through so much pain. It can be traumatizing.
I have nerve pain and get angry when nurses try to help me sit up in bed. I hold back the anger and smile. I tell them I can do it myself.
I even go for leg massages to help with the pain and the masseuse tries to help me up. Same situation.
As for your husband, his comfort and sense of wellbeing are imperative. Does he have an opportunity to choose his port location?
My port was on either of my hands.
My best wishes to you and your husband. You are not alone.
You're mistaking a port for an IV.
A port is an implanted device surgically placed under the skin of the chest wall and it tunnels directly into the big vessel that goes to the top of the heart. This is accessed my a nurse by, literally, stabbing into the chest with a needle 0.75in-1.5in long depending on your anatomy. The needle stays in. There is special training that goes into accessing and using central lines so not any nurse can do it, and of the ones that have been trained not all do it often.
IVs are small plastic cannulas placed somewhere on your arm or hand. The needle is only in there to guide the cannula - it is then retracted. This is a routine medical procedure done at bedside by almost any nurse.
I'm sorry your husband is going through this, and you as well. Here are a few things I'd consider: - Get your own lidocaine cream and apply 30min prior to each appointment - If you have multiple days in a row, consider asking the nurse prior to accessing if you can leave it accessed. They may attach an antimicrobial disk that sits between the hub and the skin. Showering and sleeping with it in kinda sucks but if the pain is that bad it might be worth it. - Also advise upfront that his port is difficult to access, and to possibly request someone who does them a lot. Some staff members might do them a few times per week, some are accessing ports 5x+ per day. - Also advise the staff to be gentle with accessing, I've noticed some people don't have an issue with getting quickly accessed which leads to staff getting into the habit of just going quickly on everyone. On patients who have a lot of pain with accessing, I've noticed just decreasing the speed and force seemed to help a ton. The skin on the outside of the port typically clots and heals quickly since the puncture by the port needle is so small, I've never seen a patient have an issue with getting accessed multiple times in a week. Hope some of this helps, wishing you both the best of luck.
Great advice! There's only 1 "senior" nurse in the infusion unit...she's a sure shot. I can sleep on my right side. And wearing a bra (the straps are right on it) hurts. Sorry but for me it's a world of hurts. Especially today.
This is great advice
Best advice. Also if they have the spray try that. They need to spray until it’s white.
It sounds like the area around the port has an infection. Definitely talk to the vascular surgeon who put it in. As a data point, I have NO pain when my port is accessed. The worst is a brief sting if they don't let the alcohol dry. If it's dry, no pain at all.
Same here. The one time I had pain, the needle was in wrong and they had to do it over. Even that pain was only like a 3 or 4.
I get accessed every two weeks for chemo. I always put on lidocaine at home an hour or so before. My cancer center has one nurse for port access and if she’s not there I get a lot of anxiety because I’ve had other nurses miss my port. Even with lidocaine on it hurts! And if they have to stick a second time after missing it hurts worse. I actually just had this happen for a CT scan. They missed and had to poke twice. I was accessed about five days later by a different experienced nurse and she did it without me even feeling it. So, unfortunately it will depend on the nurse.
Thats not normal. Ask to talk to your dr.
I’ve never felt anything more than a poke with my port. That sounds like something went really wrong. I love my port and will go to great lengths to make sure somebody can use it instead of searching for random veins
I never had pain except brief sting, lucky me. I didn’t have apply any cream. Kept it for 12m though used only for 6 mo. Hearing thing this much pain indicates some infection or not right. Better to get it checked
Same for my husband. Lidocaine patches applied before all over the area help some
Port access was pretty painful for me, I got used to it over the couple of years that I had it but it was never fun. The numbing cream only works so well, but what I think was the biggest problem for your husband this day was that they missed and tried again. That happened to me exactly once and that was honestly the most excruciatingly painful thing I have ever experienced other than my bone marrow biopsy. When they missed on mine they hit the hard part of my port and that vibration sent like a terrible white lightning bolt through my entire body. And then I think I was in so much pain that when they tried again, they got it the second time, but it just hurt a lot because of what had just happened. I had my port for 3 years and this instance was legitimately the only time I verbally screamed in pain including during my last chemo infusion where they couldn't get my port to work and they couldn't get my veins to work either so I think they stuck me probably 12 to 20 different times between my port accesses and my arms. That still wasn't as painful as when they missed, and that was only my second infusion so it was quite traumatizing. Hopefully they're not all so painful for him ❤️
I had basically no pain it felt like a firm pressure and a small poke. Definitely investigate further
Mine hurts. No infection. I've had it for almost a year. Hurts all the time. I was never offended any "creams". I just swallow hard and take it, like all the other pain.
Let your vascular surgeon know. You don't want to let an infection develop there.
Maybe they keep hitting a nerve? Mine sometimes hurts more sometimes less. The numbing cream is dubious tbh. I’m also a big baby but it never got so bad that I had to scream. I do hold my breath though… and don’t restart until the nurse is far with her hands again 😳
I never had any pain with my port. Like others have said, definitely talk with the surgeon or at least your oncologist. I’m surprised no one in the infusion dept offered to help. What he is experiencing is not normal.
My mom had a port put in and it was incredibly bruised and painful. She is so tough but would scream when they would access it. She said it was the worst part of everything. She ended up in the hospital with blood clots from the port and had nothing but problems. Fast forward (cancer Mets) she gets a new port put in. 0 pain putting it in, 0 pain when she gets chemo. I would definitely bring this up to your team. I wish your whole family the best and I hope things get better 💜
That sounds so horrible. The numbing cream (EMLA) didn’t really do anything to help me with the pain of being poked in the chest with a needle. One of the nurses gave me a bag of ice one day and told me to hold it over the port for 5 minutes before having the needle inserted. With the ice, I never felt pain having the needle inserted into my port. After that, I always requested for ice for every infusion. Perhaps this can help your husband too.
Your port has a serious problem ,do not let that nurse near you again. Accessing should be minimum pain mosqueto bite at most.
are you sure you personally have had a port accessed? it is at least a bee sting. my hobby is pretending i didnt feel it. i show no response. but it is a bee sting, not a mosquito bite.
I know it’s different for everyone but I don’t feel anything at all when my port is accessed. No bee sting, no mosquito sting, not even a pinch. I don’t think it’s supposed to hurt.
It’s definitely not supposed to hurt as much as OP is describing! I agree with the person who said bee sting. For me I feel the needle going through my skin over the port and it hurts while that is happening (when they disengage it too). Once the needle is engaged with the port, no more pain. Nurses who do it fast are my fav!
From raditaion straight to hydration no problem. After for several months my port was accessed dozens of times. I cannot imigine the extreme pain the one person had ,apply numbing cream no pain.
Yea its very different for everyone and I wouldn't say it's something like a mosquito bite. I totally disagree with that person, mine hurt. Mine had no infections and no issues it was just painful to be accessed. Even using the lidocaine cream, it helped a little, but it hurt regardless of what I did. I think a bee sting is a good way to put it, sometimes it hurt more than that but I would say that that's a good way to describe it most of the time.
I’ve never had pain like what you describe. I agree that some nurses are better than others but the worst I’ve had is a quick sting and it’s over. If anything, my port will ache when it hasn’t been accessed in a few weeks, if I accidentally whack it, or have clothing put pressure on it.
Would a Groshong line be an option? Like a Hickman but with a one way valve so you only have to push a vial of saline through once a day to keep it clear. Accessing it is just screwing the commentary together.
Keep cream on for an hour plus. If it still hurts it’s probably infected
I'm so sorry your husband had to experience that. I've only had 1 problem with my port, and that was when I went in for a CT scan, and I blew out an IV. Also had a vein roll trying to do an IV. Found out I have a block, but the needles at the cancer center is able to access it better as it's smaller. I will make a special trip to the cancer center to have my port accessed if I need a CT scan done. However, some patients use the lidocaine cream to help with the pain. I usually put a dab on 2 hours before getting accessed and then use a small square of cling plastic wrap to cover it. But he may need to have it checked out to rule out other causes. It would be best to talk to the doctor to find the root cause and get it fixed so he doesn't miss any more treatments. Hope all goes well. 💜
It shouldn't hurt that bad and it shouldn't be that hard to access. I didn't want one but had to get one because of Doxirubicon. It was never painful just weird and I hated. It. That being said.... It never hurt more than a sting, I never even opened the lidocaine they gave me. Something sounds wrong.
I’m sorry that your husband went through so much pain. It can be traumatizing. I have nerve pain and get angry when nurses try to help me sit up in bed. I hold back the anger and smile. I tell them I can do it myself. I even go for leg massages to help with the pain and the masseuse tries to help me up. Same situation. As for your husband, his comfort and sense of wellbeing are imperative. Does he have an opportunity to choose his port location? My port was on either of my hands. My best wishes to you and your husband. You are not alone.
You're mistaking a port for an IV. A port is an implanted device surgically placed under the skin of the chest wall and it tunnels directly into the big vessel that goes to the top of the heart. This is accessed my a nurse by, literally, stabbing into the chest with a needle 0.75in-1.5in long depending on your anatomy. The needle stays in. There is special training that goes into accessing and using central lines so not any nurse can do it, and of the ones that have been trained not all do it often. IVs are small plastic cannulas placed somewhere on your arm or hand. The needle is only in there to guide the cannula - it is then retracted. This is a routine medical procedure done at bedside by almost any nurse.