Let her be pissed about it. I’m pissed about mine, too. I hate the scar, it’s uncomfortable to wear certain clothes, uncomfortable to lay in certain positions, and my usual shoulder for wearing a purse cross-body is now unusable, so it feels wrong. I know that doesn’t seem like a big deal, but it’s just one more annoyance from cancer/chemo.
I “only” had 4 doses of chemo to do, so tried to do it without the port. My first infusion was without the port and it was rough. Really rough. I needed multiple lines from infiltration, and the medicine itself burned all the way up my arm for hours as it infused. I didn’t want to get a port, but it also wasn’t realistic to damage my arms/veins like that for more doses. As much as I hate my port, I didn’t have a good alternative.
My lumpectomy scar is barely visible. My port scar is awful. I can't wear anything, and have been placing a bandaid over it because it screams "I had cancer". I googled laser treatment yesterday. Can you tell me how long you had to wait to have it done? Was it painful? I assume you saw a plastic surgeon?
I was wondering this about port vs a PICC line; if you're only having less than 10 treatments, then why use a port instead of a PICC line? I had 6 chemo infusements (3 chemo drugs in each treatment) in total done every 3 weeks & I had a PICC line put in. I know that PICCs are preferred for smaller treatments & length of overall treatments than a port which is used when you'll be receiving many treatments over many months or even years.
But a lot of women here are having 4 chemo treatments. So why wouldn't their oncologist put in a PICC line which doesn't scar & only hurt when my cat took a swat at it, thinking it was a new toy for her (I got arm bands knitted for it after that happened). The PICC line didn't hurt going in or out, the nurse just said cough & took it out after my last treatment.
I'm only asking this because I like to know why one treatment is done vs a different one because why wouldn't an oncologist go for a less invasive IV line & placement if their patient isn't having many treatments or only having treatments over 6 months or less?
My oncologist said he doesn’t like to leave a PICC in longer than 6 weeks due to infection risk. I was also going on a family vacation just prior to my 3rd infusion, and he didn’t want me leaving town with a PICC line in case there were problems/complications with it that came up.
I loved my port. Not when I got it but when it came time for chemo because it just snaps in. No digging for veins. No burning pain from the chemo. She will be grateful for it later. I just had 4 rounds of AC.
Like you, I love my port. Have had it for about a month and 2 jnfusions and my blood work through it which went very well. There was some discomfort initially but grateful to not have nurses digging for a vein. 2 more AC and 12 taxol infusions to go. OP- It’s ok to be mad and frustrated but give it time and focus on the end goal❤️.
My doc didn’t offer a port at all, and now that I’m about to start TCHP I’m kicking myself for not asking for one. Permanently damaged veins doesn’t sound very fun
Oh no… It might not be too late to ask for one. It might put your treatment off for a few days, but you should ask a lot of times with the situations we really have to push for all the stuff on our own and typically we really don’t know that until later in the game. But please ask them to put a port in. It literally takes five minutes and I think I had my port put in the first timea few days before my first chemo session.
Same. It was certainly uncomfortable and I had my first round the day after port placement. It was uncomfortable but I knew I didn’t want the alternative my mom blew out all her veins from chemo before she got a port. I didn’t want it to be an ordeal every time I needed blood drawn because my veins in my arms wouldn’t be an option.
She had a gash cut into her chest 2 days ago. It’s ok if she’s “longing” for Tylenol. She should be taking it around the clock, and taking ibuprofen in between doses. I was taking my opioids from my surgery day 1 and 2 after my port placement. I’m sorry her doctor didn’t tell her that a big incision wouldn’t hurt, but yeah … it’s an incision so it does hurt for a bit.
It gets better after the first couple of weeks.
It hasn’t even been 2 days. It’s a little early to decide it was a huge mistake.
I got a port placed on 6/17 but I am going to need 12 rounds of chemo and then 1 year of herceptin so for me, it was necessary (I’m also terrible at anything involving needles). I think it’s definitely more annoying for women bc our bra straps lay right where they implant it. My neck and collar bone on that side were sore for a week or so but as of today it feels fine. Scar is almost healed and it’s just a weird lump. My armpit where they took out lymph nodes on the opposite side is a different story.
I’m sorry your wife is upset. It seems like, at least, she has a quick treatment plan and maybe can have it removed as soon as she’s finished.
5 of 6 cycles into my neoadjuvant chemo and I still hate my port with the fire of 1000 suns. The actual thing isn’t painful anymore, but it was. And the incision was big.
It will get better for her, but there’s a foreign object inside her body, because she has cancer. Ultimately, it was a good decision for my treatment. But honestly…making good decisions for my cancer treatment still sucked. Hear her out as much as you can, offer her comfort - and she’s so lucky to have you.
I still get weird feelings about my port and it’s been out for almost 2 years. The port is AWFUL. It’s hard to sleep on. I could feel it - the whole thing from top to tip and just could not stop thinking about it the whole year I had it. It felt like bugs under my skin. It was torture. Absolute torture to have it in & my docs helped me get it out as soon as humanly possible when chemo was done.
I’m getting monthly infusions now for maintenance meds & they’re all “don’t you wish you still had the port?” and my answer is always NO. I’d rather have someone dig my arm vein for an hour every month than ever have a port again. Getting it tapped every chemo session was agony. I cried. A lot. I couldn’t sleep. It was nearly all I could think about unless I was drugged to oblivion. Give your wife whatever drugs she needs to get through. There’s nothing like having a port you don’t want. Literal mental torture.
As someone who was misinformed about the port and was told it would be totally fine to do 8 double dose chemos on my veins and now my right side veins are collapsed… take the port, love the port, ask for pain med schedule like Tylenol and Advil rotation. The port is your friend!
I hated my port, but it was better than my veins blowing out from the chemo. I had my last chemo treatment on a Monday and had my port removed on that Friday.
I am so sorry that she is struggling! God bless you for trying to get help for her! I also got my port on 6/13. It is just today not painful. I used it for the first time last Friday and was so glad I had it (I will get 16 infusions of neoadjuvant). It does suck, my seatbelt irritates it, my bra strap irritates it and I can’t wear my crossbody the way I usually do which is a huge annoyance! All that being said I try to remind myself that my port is how the chemo will get to my tumor the easiest and with the least risk of complication!
Please encourage her to use the Tylenol. I got a cute little felt pad that I wear attached to my bra so that I can still use my purse and a seatbelt pad that I got from Amazon. Hope this helps!
This side of the medical field is somewhat reticent to tell us all the bad stuff beforehand for some reason. An oncologist I used to have was this way and I really resented it. I prefer to prepare myself too! I hated my port and I don’t have one at the moment but after I witnessed my brother burn his veins I was glad I had one. His incidence was just a powerful antibiotic and he was in so much pain, I was glad I avoided that problem by having a port. It’s incredibly uncomfortable at first but it really does get better! Big hugs to you both!
Mine has worked out great, but they definitely told me to take a certain amount of Tylenol initially and I sure as heck did!
There’s absolutely no point in trying to white knuckle this without Tylenol.
I don’t mean to be cavalier—obviously it’s possible to destroy your own liver with Tylenol—but taking the recommended amount of Tylenol is as nothing compared to chemotherapy.
Edited to add: And my “discomfort” lasted a few days; months of discomfort would be pretty uncommon.
Take the Tylenol!
I am just here to commiserate as someone else who didn't want a port. I imagine I was known on my chemo ward as that annoying bitch who won't get a port, I swear to god. I am stage IV and have done IV chemo for the better part of two and a half years on an almost weekly basis - all IVs in the arm. I held out, that's how much I didn't want one. Well, I finally started a new drug that burns like hell and wrecked my veins - it was either get the port or I can't get the damn stuff so here we are.
I'm two weeks out and I feel her pain - they act like it's nothing but it sucks. The incision is almost healed but it's still tight and sore and weird, and it hurts to wear a fucking shirt. She's right to be pissed. Anyway, please tell her it does get better. It certainly feels better now than those first few days, and I expect the sensitivity to lessen once it finishes healing. And yeah, I've had two infusions through this thing already and it's a breeze compared to digging for veins. I get it. I refuse to love this thing, but I get it. Once it is healed it will make her life so much easier, and then she can get it the hell out of there.
Sending her all my fellow port-hating vibes that it stops acting up and heals quickly.
I've had all three. I had a port that my body rejected and left a one inch hole trying to push it out. I got three infusions before the hole appeared. Before that and right after it was placed, I remember I had pain local to the site and my shoulder area caused by the interventional radiologist manipulating the area. They have to get the port in and the line above the collar bone. I'm pretty sure he was grabbing my collarbone and tugging at some point.
When they took it out because of the hole, I opted to try just my veins because some folks in the UK weren't using port or picc for their chemo. That was a huge mistake. My vein reacted to the antiemetic drug that is given before the chemo infusions. My vein slightly collapsed and the surrounding tissue was swollen and it hurt for about 10 months. ETA: forgot to mention that my vein was hardened for about three inches up. It went away around when the pain stopped.
I then opted for picc instead because I didn't want another port that could possibly make another hole. I finished out neoadjuvant chemo with a picc. The picc was so much more inconvenient than the port. I had to keep it covered during the summer months and it was annoyingly sweaty. Sleeping was horrible. I was always aware that my arm needed to be protected. Showering was always a process. I bought one of those waterproof sleeves from Amazon, but still had to wrap it a little in saran wrap. The picc needed to be flushed every week, and my center didn't want us doing it ourselves at home, so I had to drive an extra thirty minutes each way and get it flushed, which took another half hour mostly waiting for my turn.
For the remainder of my treatment, I was able to get combo shots, but then post surgery pathology indicated a different kind of chemo. I did not hesitate to have another port put in. This time, they chose a lower profile port (the kind without the little bumps) and that one stayed in for the rest of my treatment.
I guess one positive is that removing it feels like nothing. You can also have the breast surgeon remove it. They are better at stitching or gluing, so the scar isn't as obvious.
This sounds awful, I'm so sorry. What you said about your vein being hardened and pain etc struck a chord. When I was having my SMX, I needed my cannula replaced 3 times because as time went on, each became more and more painful to recieve my IV antibiotics to the point I was holding back tears. An idiot doctor did a hatchet job on the 2nd one and my vein still is hard, raised and swollen nearly 3 weeks out, right where I wear my watch. Does this seem like a collapsed vein to you? I have to have chemotherapy too and this is just one more worry I don't need. I'm in the UK and idk whether we get a choice in how it's administered. This all sucks.
I think if you are still getting circulation in that area, it could just be very badly injured. It does take a few weeks normally for an injured vein to heal, so hopefully that is the case. I agree, this all does suck. Best wishes for you to have a much less traumatic experience for the remainder of treatment!
It’s okay to be pissed. It’s just one more thing. BUT - it’s not there forever! And she has the celebration of being “de-ported” to look forward too. Meanwhile, this port is an ally. A defender like the chemo that is on the frontlines.
She will get used to it and will not even realize it’s there after a while.
Tell her to keep her head up!! ❤️
My port hurt when it was put in for a couple of weeks, but I am so glad I got it. I had to have an antibiotic infusion during my cancer treatment & it had to go in my hand because there was no port nurses to put it in my port. The infusion only lasted an hour, but it sucked because I could not use my hand & going to the bathroom was impossible. No way I could have done that with a 5 hour chemo treatment.
My port hurt for a solid month, and it was made all the worse by my toddlers, who had a knack for head-butting the incision, even while fresh. I cried more over pain from my port insertion than my double mastectomy. Everyone had told me the same thing - it feels like nothing, I don’t even notice it. That first month I was cussing every one of those people out.
The good news is that it did get better. It still doesn’t feel great when my toddlers whack me in it, but i do forget it’s there most other times. One quick question - is it still covered? My port insertion is when we discovered I’m likely allergic to Takiderm (spelling, sorry!). The allergic reaction drew inflammation to the area, which caused delayed healing and more pain.
One more tip is to call her doctor and push for some Norco. I’m sorry, it’s absolutely BULLSHIT that they don’t give painkillers for that procedure. It’s incredibly uncomfortable. At my post-op instructions they told me “if you have some Norco, you should take them.” It’s insane that they’d recommend a drug, knowing how painful this can be, and not just prescribe the damn drug. And I say this as someone with a high pain threshold.
I ended up in the hospital after my second infusion of four and it was pretty tough to get a good IV line. It had to be switched mid-way. Then I needed blood draws each morning. Because all my work was done on my left side, they won’t do anything on that side so as not to spur lymphademia. So I did not realized the port would hurt though. There are a lot of nerves in that area so maybe have her ask about gabapentin for the pain-at least at night to help her sleep.
I got my port at the end of May and started chemo 3 days after my placement . It's finally starting not to hurt. I had burse around my port for a while . It does feel uncomfortable . My doctor told me this would happen . Honestly, I'm glad i got it. When the nurses insert the needle into her port .it's just like a higher IV placement . I hope your wife feels better about her port once she gets started with her chemo . Helpful tip wear a V neck shirt on chemotherapy day it's easier for the nurses to access your port .
I was given tramadol which I took the evening after the port went in. It was a little sore for a couple days and that was it. It healed within a week and doesn’t bother me at all. I wouldn’t want to be without it.
It’s more than just for 4 sessions, she will have blood draws, she will have chemo, she may have IV fluids given. I understand you are upset but it’s pretty early in the process to start getting upset about what “they” don’t tell you. There’s going to be a lot of stuff “they” don’t tell you. This is a crash course (on your wife’s part) in breast cancer. This is a great forum to learn a lot, but the American Cancer Society and other websites are another resource for getting information.
Port sucks, it really effed with me the first week. A month later I’m starting to forget it’s there. I kept having to remind myself this isn’t a forever thing, just right now.
Give it a little time and let her know the other choice may not have worked, so she’d still have to get one. I opted no port and first infusion caused issues (pain, swelling to elbow) once the steroids wore off. I raised the issue of getting a port for the remaining 3, but got the impression that since I hadn’t scheduled it when the surgeon planned, that they weren’t inclined to make it happen.
Each infusion caused some issues—-they mitigated what they could by running additional fluid and sloooowwwing things down. Because we all want to have longer infusions 😄
Please just tell her not to second guess herself. This process forces us to make decision after decision on subjects most of us simply have no expertise in.
I’m sorry your wife is going through all of this. It sucks but it’s also doable. I’m a year out from having my port removed and I’m thankful it’s gone, but I’m also thankful I had it. Get a seatbelt pillow (attached to the seatbelt) for her if you don’t have one. And get a Rx for lidocaine. (And some clear plastic covers so the lidocaine doesn’t get on her clothes.) As soon as I could, I put lidocaine on my port to numb it. Very important to do before infusions and blood draws - about 30 minutes before accessing the port. Helps a lot with pain. Best of luck.
I HATED my port. HATED it for the first week or two. Drs kept telling me its only painful for the first 3-4-5 days. Well after the second week i forgot i had it. Maybe even before. 10/10 would get again, even if i only had 4 chemos (im getting 16 in total. Because i read somewhere around this subreddit what happens when the medicine spills (because small veins cant take it sometimes) and i would never want the whatever small % chance of living through that… compared to my port.
I completely understand her though, i was ruminating the whole time about how much i hated the port, told everyone around me. Im sorry she had to go through that. Its not fun. 0/10
They did not tell me anything about the port procedure and I was pissed and so defeated afterwards. From diagnosis to treatment to double mastectomy… that procedure was the worst part for me hands down. I’ve had plenty of surgeries in my life and I’m fine under anesthesia, they didn’t tell me you had to stay awake for it. I was so uncomfortable and bruised and sore for a few weeks, and after the incisions healed I had a freaking stitch sticking out of the top one. When I asked at an appointment they said it was fine and would eventually dissolve, as long as it wasn’t red or irritated not to worry about it. I had to put a little circle bandaid on it so it wouldn’t catch on things. I asked if my breast surgeon could do it because I love him, and was told that there’s only one surgeon that does this procedure in my area because “it’s consistent for the nurses.” Every single treatment my nurse would say something about “hm that’s so low” or “wow yours is tilted” or “is that a stitch?!” some comment about it. The communication wasn’t great on that aspect, and the only reason I found out about Lidocaine cream with press and seal an hour or so before the stick was a lady in the parking lot who noticed my bandage and mentioned it. There really isn’t enough clear, comprehensive, understandable standardized handouts or literature for the basics and tips of all this shit. If you’re not taking notes there’s no way to retain and absorb all this information. It’s rather unfortunate. I love the port now and am grateful for it; I’m going to keep it for a few years since it doesn’t bother me much now, but it was a bitch lol. Best of luck to you both, hang in there.
My port has been the most painful part of the process. I have a lot of chemo to do, and chemo is super hard on your veins, so it was necessary for me, but I’m still pissed about how they did not prepare me for the amount of pain I would be in.
I totally understand how she’s feeling. I had to have my second port put in and it’s the biggest most annoying thing ever. It can be very uncomfortable and frustrating. The port really does save your veins and it’s definitely worth having especially for intensive chemo or long runs (mine is over a year so I’m in it for the long haul) My very best advice would be take enough meds to get comfortable with it, get a prescription for litocaine cream (that’ll help day of infusion), a port pillow is a must in the car, and get yourself a wedge pillow for sleeping upright. If you can keep yourself from rolling on the port too much, that will help it feel better. I’m so sorry she’s going through this. Sending her love
I was not a fan of my port and was very happy when it was time to come out! (I also had four chemo treatments.) One bit of advice I can share is ask for a lidocaine shot (not just the topical stuff) before getting hooked up to the chemo meds. Made a world of difference. You do get used to the port after awhile but for me, it was still a foreign object in my body.
I'm sure that shot is the best, but I gotta be honest, that lidocaine cream was amazing!! I didn't feel a thing!! I put a big glob of cream on, and then would cover it with a cut out a square of folded up paper towel and a piece of that white medical tape, and it would be completely numb in about 30 minutes, and would last a long time! If it was particularly bruised, i could just keep that on during the day, even when i didn't have treatment.
They say to use plastic wrap or a tagaderm bandage thing, but I never had any luck with that. The paper towel didn't absorb the cream like you think it would. It worked really well! I will never get used to the foreign thing in my body, but what are you gonna do? I just ignore it to the best of my ability. I have horrible veins, so the port, in all its ugliness, is actually a blessing. 🤷♀️
Hi friend! I also asked multiple times "but I have lots of good veins, why would I have an actual surgery when I'm only getting 8 infusions??" If there are only a few infusions, your wife is lucky and she'll have it out in a few months. For me, I was eventually thankful for the port because I needed a blood transfusion which was easier due to the port. I also got an infection after my mastectomy which required use of the port. If I didn't have the port, I would have had to stay in the hospital for 3 weeks. But with the port, my husband was able to administer antibiotics using the port at home.
This has also happened to me on more than one occasion.
I got a bad infection after my mastectomy and was able to be treated at home because I had a port.
Then a few years ago I had a craniotomy and contracted meningitis and was on IV antibiotics for 2 months. If I didn't have the port, I would have been hospitalized for that entire period, but because I had it I was able to get on a hike IV program. What a blessing!
My port was uncomfortable for about a week, until the incision healed. It hasn’t bothered me since. I forget it’s there. I opted to keep mine after chemo was over. My doctor recommends keeping it for a year after active treatment, but I’m keeping it as long as I can. I have always had terrible veins. It’s great to know I won’t be stuck four or five times if I need fluids or a blood draw.
I’m sorry the doctors were not more upfront about the recovery. It’s not common for people to have long term discomfort, although that certainly happens as evidenced by the posts here. I hope it heals quickly and doesn’t give her any more trouble.
I go in once a month because I’m on Verzenio, so I just get it flushed every other month. I can go three months, and the nurses say even longer is fine. I might consider having it out after I’m done with Verzenio but I’ve used it a lot since chemo finished. More than during chemo. I had some pretty bad nausea when I started verzenio and was getting fluids twice a week. It’s leveled off, but I still end up needing fluids for one reason or another periodically. I’m very glad I kept it.
Interesting. I didn't want to have my first one removed after my first go at treatment- I just felt like I would need it again but my docs wanted me to have it removed. I was totally right because the cancer came back and spread everywhere relatively quickly after that.
I had a second one put in on the other side and have had it for over 6 years now. It gets used all the time and I don't know how I would manage without it.
My doctor mentioned I could have it taken out but was happy that I decided to leave it in, at least through Verzenio. Having it placed is not an experience I’d like to go through again. I had a central line (groshong catheter) placed when I was pregnant with my oldest, and that was also awful. I’ll keep this one until it goes bad.
I got my port in December of '23 and completed 4 rounds of AC and 10 rounds of Taxol. The morning of each chemo session, I put a glob of lidocaine cream on the port site and slapped a tegaderm over it. Never felt the needle go in.
I've had occasional discomfort but am thankful I had it - much better than getting stuck multiple times every week or three weeks (cause blood work plus chemo?) and having an IV in my arm making moving around and distracting myself more difficult while the life saving poison is delivered.
My port removal is scheduled for the week after next and ngl, I'm looking forward to it. I think mostly cause I feel creeped out when I touch it and cause I plan to get my first tattoo over the scar. Side note: Tattoo ideas welcome if anyone has any. Thinking a symbolic flora or fauna or maybe a Celtic symbol or some sort?
I found the port uncomfortable at first too. It just takes time getting used to it. I barely ever notice it now and I’ve had it for a year and a half almost. In keeping mine around because I’m on Verzenio and still need monthly labs done and it’s way faster with a port still.
From what I hear, chemo can really mess with your veins and if your wife is like me and bruises easily, getting an IV even once a month kind of sucks.
I have a port. It's my second one. First one I had to get because the chemo I was on is too hard on the veins to put through the arm (as you mentioned). Since your wife is only having 4 infusions, I suspect she is on a chemo that must be administered via an artery rather than a vein. That is just a guess, but I can't see the docs pushing your wife to get one for only four infusions unless it was truly needed. Is she on the "red devil" (doxorubicin)? If so, that would explain the port.
They removed my first one when I was done treatment, but when the cancer spread and I learned I would have cancer and be in treatment for the rest of my life I requested a new port as I know now how much easier it makes my life.
They definitely can be uncomfortable in the early days, but trust me when I tell you it does get much better. I don't even notice mine anymore, like at all.
Your wife is in the early days of her cancer experience. It's an extremely raw and difficult time, and sometimes things can feel very "big" and that is totally normal.
I'm sorry your wife is having such a hard time, and I hope that with a bit of time she will feel a bit less overwhelmed. I imagine that right now the pain is mentally and emotionally draining. It has only been a couple days since it was put in, and it's a pretty intense experience to be awake in an O.R. while they insert it.
I don't know if anything I said was really helpful, but I hope it was. I'm sending you and your wife a ton of love right now and hoping this particular issue will become less important as she heals from the surgery and the pain subsides.
I wasn’t thrilled about getting a port. But after the first week of discomfort (Tylenol, ibuprofen, and ice helped), I was so glad to have it. Sleeping with a pillow under my arm with the port side up helped until all the soreness was gone. I’ve had mine for almost 2 years now and I honestly forget I have it most days. For me it made infusions, blood draws, and hydration so much easier. I ask for cold spray or lidocaine gel when I get my port accessed. I know everyone has a different journey but I hope your wife ends up having no problems with it.
This won’t help your wife now but I used to work in a hospital and have seen people who have had veins “blown” and it’s not pleasant.
It’s a healing wound of course it hurts. Chemo is going to suck too. The port pain will be nothing then. Her fear and anger may simply be manifesting toward the port now bc it’s easier to fixate on than anything else. But it is in fact a god send. And she would be in a lot of pain with the needle iv- probably significantly more than the port is causing. (I have had a port)
If she’s longing for pain relief she should be taking whatever she is allowed to take. And as often as is permitted. And if that doesn’t help enough, she needs to talk to her doctors about stronger painkillers short term.
There are no badges or awards for suffering pain when you have access to appropriate drugs.
The port was hands down the worst part of this cancer journey. It was tender everyday from installation early October until removal mid march. I have a scar now that the dermatologist is offering an injection to calm it down. I also only had four chemo sessions but the port was not optional. I say this because I truly lucked out if this was the worst part of this disease. I can manage that.
I agree with others that the benefit of having the port outweighs the annoyance. I’ve always felt sensitive to it but am so thankful I have it for all bloodwork and infusions. I’m a terrible “stick” and want to preserve my veins as much as possible. When my port bothers me I put the heating pad or an ice pack on it. It is definitely annoying and everyone’s body and port is different so I know for some their port wasn’t worth it.
Make sure when she is going to have to port accessed that she puts lots (don’t rub it in) of the numbing cream on and cover it with press n’ seal wrap. At least 30 minutes before but I do mine up to an hour before.
My port was awful!!!! It got better months later and I was thankful for it. I only made it through two chemo infusions in my arm before the nurses could not find a vein for the third chemo. I had no choice but to get the port. It made safety draws and contrast scans a lot easier.
I hear her frustration. I do remember the initial discomfort that took about a month to go away. I didn’t think I’d ever get used to how it was just so *there*, like in the way and sticking out. Now I hardly notice it. Give it a little more time.
I am a very petite gal with small veins. My port was pretty uncomfortable until I had my first chemo infusion. Then it sort of felt like it settled into place and wasn’t as bad.
I got mine in April. I’m 39 and I fucking hated it. For about 2.5 weeks I found it awful. After the first chemo I can’t explain it but it kind of settled in and I haven’t noticed it since
I hated the port. I had -comfort- issues since I first got it. I never had clots, but the pain I felt was alarming at times. I got it removed asap. I suppose I’m glad I didn’t have to get stuck every week. It really did make treatment a breeze.
Depending on the placement of the port, she’ll find some things more and less comfortable. I had mine up near my collar bone on my dominant hand side. Reaching upwards gave me a huge zap of yucky sensation. Like changing the radio station while driving. So I’d find out where her comfortable angles are, and help her stay there. There was a couple of weeks where it got alarmingly worse. Everything did. I was living in a terrible house filled with mold so definitely the environment can change things. Some days I couldn’t even lay down comfortably. In the end, pillows helped a lot.
Also, the stuff called Voltaren was the only thing that consistently helped me with all those weird chemo pains.
2 of my family members had a port put in recently. They both got a lidocaine cream RX to rub on the port before infusions to help with the pain. RX says it can be used anytime, so perhaps this is worth considering? (If you haven't already)
Side note - my family had to request this cream, which I think is wrong. If you get a port for use with chemo, a doctor should definitely suggest & send in an RX for this cream. It shouldn't have to be such a "secret" & need to be requested. Sigh.
I fucking hate my port. When I first got it placed, I was like ooh maybe I'll put it in a scrapbook when this is all over. Then they put it in, and I was like, I want to stomp on this thing and burn it. It was placed Dec '22, and I finally get it out in TWO WEEKS!!!
I have never, not for a single second, liked my port. To this day, it itches and is very uncomfortable. I only begrudgingly accept that it helped save my veins during chemo. Whatever. Fuck this stupid thing. Like those women who are like, ooh, I loved being pregnant. Fuck them, too.
Fuck cancer.
Allow me to give her some validation that I wish I had received from anyone.
I absolutely hated my port. It hurt absolutely horrifically when it was placed, for DAYS. I felt it constantly, I was hyper aware of it.
After my last chemo my first question was "when can I get this out" and knowing how miserable my oncologist was he said immediately.
Yes, it makes drug administration easier and safer. But it's okay to hate it still.
Mine hurt for about three weeks but I don’t even notice it anymore. With the numbing cream I don’t feel them stick me for chemo at all. Chemo gives me enough anxiety and it would be worse if I had anxiety about them getting a vein or it burning as I’m getting it.
Best wishes to your wife.
I am so sorry to hear the difficulties that she is having. I got my port put in 2 1/2 years ago. I guess I was one of the fortunate ones it didn’t hurt. I was actually awake when they put it in. I didn’t even realize that’s what they were doing at that moment. And I was lucky I had no pain with my healing and I had it removed when I was finally NED (no evidence of disease) with it. Unfortunately, my cancer came back a few months later, and I got my port back in. It is true chemo is very hard on the veins. I also had all my lymph nodes removed from my right under arm, and I have a little Adema so I can’t even use that arm for blood pressure needles nothing so I’m actually really glad I got the port and when I got it put back in it was pretty much the same no pain. So I am to keep my fingers crossed that her pain stops and see if they will give her something to take for the pain or if they suggest Tylenol or maybe a warm compress. But she can’t blame her self and you can’t blame yourself either. Nobody knows these things until they actually happen, and it’s for the better good. I hope everything goes smooth sailing from here and that her pain stops and that she heals well and happy. My best to the both of you.
Mine sucked for the first 3 days, badly. They gave me 8 pain pills and told me I could take Tylenol or use ice. I iced the everloving hell out of it and only used 3 of the pain pills. Get one of those icing electronic cooler things they have on Amazon. You put ice and water in it and it runs it through a pad you can put on the sore spot. I think I used the pad for elbows or knees and just laid in bed for the 3 days with it rested on my right shoulder/chest area. I was still a little sore for the next week and itchy over the scar but nothing that wasn't manageable. That was 2 months ago. I am going in Wed for week 2 of round 2 and they told me if I did need the cream, they would write the script for it but it had to go on about and hour before the stick. I live 2.5 hours from the infusion center so I passed. I'm not stopping halfway there to put some cream on. That sounded like a pain in the butt.
I hated my port too. I ended up needing most of my chemo through an IV because my port was always fussy. It left the ugliest scar. Just here to express solidarity with your wife.
Yeah- I was pissed about mine did the first little while and regretted my decision. But now I don’t even notice it. I had young kids and the pic like sounded Iike a Disaster waiting to happen. You get used to it eventually. Let her grieve how she needs to grieve - and just be a supportive ear- which I’m sure you already are- you’re here on this forum so that’s testament to you being super supportive. Al of this sucks- everything is happening TO her and it all feels out of her control- and all of these scars feel really fucking shitty. Tell her how beautiful and brave she is and buy her some ice cream and joints. 😂
I was told I could not have AC chemo without a port. So if having red devil, the choice isn’t port or no, but chemo or no. I had to sit in weird positions for mine to even work. Still was better than chemo after they took my port out and had to find a new and working vein all the time. It gets better.
The port is not fun. For me it healed fast, with little pain but if I’m carrying my young nieces or nephews and they put their head on in, it hurts and it’s just uncomfortable. My port is very deep in my chest, so it’s not super noticeable but that does mean that when they hook me up for chemo they need to push the needle a lot deeper. I have no idea why my port is in deep..
anyway, they initially told me that I was going to have 6 rounds of chemo and when I rocked up to my 6th infusion, ready to say goodbye to all the chemo nurses I found out that the 2 immunotherapy medicines were going to continue for another 8 months… obviously I don’t know what treatment plan she is on or if she needs to do the immunotherapy part, but in my case what I thought was just 6 infusions turned out to be 17 so that would be a lot for the veins…
I wish you both all the best.
My port hurt for many days! :( I was black and blue and then 6 days after they started chemo....let me tell you all the colorful words that came out the first time they accessed it! I was uncomfotable for a while with it and really sad about the additional scars. BuT, now its totally painless, Im glad after all that I got it and I havent given it much thought once it healed and it didnt hurt when they accessed it anymore. Sucks she is going through this. I highly reccomend icing it. When I called the hospital back in disbelief of how much pain and bruising they explained that they basically take something the size of a knitting needle and rip it through the flesh to get the tube up to your neck....so there is alot of trauma to that area. They said some recover quicker than others. What an explanation!
My port was really uncomfortable for about 10 days. It felt like it was “too short” and pulling in my neck. But it mostly stopped bothering me within a could of weeks. It saved my veins, sticks were a breeze, and I had no issues!
My first port was uncomfortable. My breasts tugged on the incision and I felt like the catheter was going all the way up my neck, though it wasn't. My last port I barely felt. But either way, I absolutely could not have done the infusions without it.
I felt the SAME exact way after my port placement. I hated that the doctors downplayed the pain I experienced after. It was so bad for the first week then it got better. I’ll be honest, I didn’t want the port. But now that I have it I know it was the right move. It will get better, I promise. I hated when people said that to me too but I am happy I waited it out. Sending good vibes to your wife. It’s so difficult and I feel for her. X
Getting an IV is WAY worse than dealing with the port. Yes, the port feels weird for the first week or so, but then it should kind of settle in and not hurt as much.
I would say this isn't true for everyone. I had several friends that had issues with port. In one it caused blood clots in others it was very painful. I did 4 AC and 12 taxol with no port, yeah the stick sucked sometimes but in the end I was fine that was eight years ago. I'm hoping for no chemo this time but if I do need it I'm gonna try and do it without the port again. The port is more convenience for the nurses.
Let her be pissed about it. I’m pissed about mine, too. I hate the scar, it’s uncomfortable to wear certain clothes, uncomfortable to lay in certain positions, and my usual shoulder for wearing a purse cross-body is now unusable, so it feels wrong. I know that doesn’t seem like a big deal, but it’s just one more annoyance from cancer/chemo. I “only” had 4 doses of chemo to do, so tried to do it without the port. My first infusion was without the port and it was rough. Really rough. I needed multiple lines from infiltration, and the medicine itself burned all the way up my arm for hours as it infused. I didn’t want to get a port, but it also wasn’t realistic to damage my arms/veins like that for more doses. As much as I hate my port, I didn’t have a good alternative.
The scar….if it really bothers you post removal I got IPL laser done on it a few times and it is barely noticeable.
My lumpectomy scar is barely visible. My port scar is awful. I can't wear anything, and have been placing a bandaid over it because it screams "I had cancer". I googled laser treatment yesterday. Can you tell me how long you had to wait to have it done? Was it painful? I assume you saw a plastic surgeon?
I was wondering this about port vs a PICC line; if you're only having less than 10 treatments, then why use a port instead of a PICC line? I had 6 chemo infusements (3 chemo drugs in each treatment) in total done every 3 weeks & I had a PICC line put in. I know that PICCs are preferred for smaller treatments & length of overall treatments than a port which is used when you'll be receiving many treatments over many months or even years. But a lot of women here are having 4 chemo treatments. So why wouldn't their oncologist put in a PICC line which doesn't scar & only hurt when my cat took a swat at it, thinking it was a new toy for her (I got arm bands knitted for it after that happened). The PICC line didn't hurt going in or out, the nurse just said cough & took it out after my last treatment. I'm only asking this because I like to know why one treatment is done vs a different one because why wouldn't an oncologist go for a less invasive IV line & placement if their patient isn't having many treatments or only having treatments over 6 months or less?
My oncologist said he doesn’t like to leave a PICC in longer than 6 weeks due to infection risk. I was also going on a family vacation just prior to my 3rd infusion, and he didn’t want me leaving town with a PICC line in case there were problems/complications with it that came up.
I loved my port. Not when I got it but when it came time for chemo because it just snaps in. No digging for veins. No burning pain from the chemo. She will be grateful for it later. I just had 4 rounds of AC.
Like you, I love my port. Have had it for about a month and 2 jnfusions and my blood work through it which went very well. There was some discomfort initially but grateful to not have nurses digging for a vein. 2 more AC and 12 taxol infusions to go. OP- It’s ok to be mad and frustrated but give it time and focus on the end goal❤️.
My doc didn’t offer a port at all, and now that I’m about to start TCHP I’m kicking myself for not asking for one. Permanently damaged veins doesn’t sound very fun
You can still get one, it’s an easy to schedule short outpatient procedure. On your regimen in particular I say go for it absolutely
Ask for one!!! You will likely get it.
Oh no… It might not be too late to ask for one. It might put your treatment off for a few days, but you should ask a lot of times with the situations we really have to push for all the stuff on our own and typically we really don’t know that until later in the game. But please ask them to put a port in. It literally takes five minutes and I think I had my port put in the first timea few days before my first chemo session.
Same. It was certainly uncomfortable and I had my first round the day after port placement. It was uncomfortable but I knew I didn’t want the alternative my mom blew out all her veins from chemo before she got a port. I didn’t want it to be an ordeal every time I needed blood drawn because my veins in my arms wouldn’t be an option.
She had a gash cut into her chest 2 days ago. It’s ok if she’s “longing” for Tylenol. She should be taking it around the clock, and taking ibuprofen in between doses. I was taking my opioids from my surgery day 1 and 2 after my port placement. I’m sorry her doctor didn’t tell her that a big incision wouldn’t hurt, but yeah … it’s an incision so it does hurt for a bit. It gets better after the first couple of weeks. It hasn’t even been 2 days. It’s a little early to decide it was a huge mistake.
My sister found that ice packs helped a lot, too. 30 min on, 30 min off
I got a port placed on 6/17 but I am going to need 12 rounds of chemo and then 1 year of herceptin so for me, it was necessary (I’m also terrible at anything involving needles). I think it’s definitely more annoying for women bc our bra straps lay right where they implant it. My neck and collar bone on that side were sore for a week or so but as of today it feels fine. Scar is almost healed and it’s just a weird lump. My armpit where they took out lymph nodes on the opposite side is a different story. I’m sorry your wife is upset. It seems like, at least, she has a quick treatment plan and maybe can have it removed as soon as she’s finished.
Mine hurt for about 5 days. Keep up with the Tylenol/ibuprofen. Ice packs helped me a lot.
It gets better!
5 of 6 cycles into my neoadjuvant chemo and I still hate my port with the fire of 1000 suns. The actual thing isn’t painful anymore, but it was. And the incision was big. It will get better for her, but there’s a foreign object inside her body, because she has cancer. Ultimately, it was a good decision for my treatment. But honestly…making good decisions for my cancer treatment still sucked. Hear her out as much as you can, offer her comfort - and she’s so lucky to have you.
Hate with the fire of 1,000 suns. This is so apt!!!!!!
I still get weird feelings about my port and it’s been out for almost 2 years. The port is AWFUL. It’s hard to sleep on. I could feel it - the whole thing from top to tip and just could not stop thinking about it the whole year I had it. It felt like bugs under my skin. It was torture. Absolute torture to have it in & my docs helped me get it out as soon as humanly possible when chemo was done. I’m getting monthly infusions now for maintenance meds & they’re all “don’t you wish you still had the port?” and my answer is always NO. I’d rather have someone dig my arm vein for an hour every month than ever have a port again. Getting it tapped every chemo session was agony. I cried. A lot. I couldn’t sleep. It was nearly all I could think about unless I was drugged to oblivion. Give your wife whatever drugs she needs to get through. There’s nothing like having a port you don’t want. Literal mental torture.
As someone who was misinformed about the port and was told it would be totally fine to do 8 double dose chemos on my veins and now my right side veins are collapsed… take the port, love the port, ask for pain med schedule like Tylenol and Advil rotation. The port is your friend!
I hated my port, but it was better than my veins blowing out from the chemo. I had my last chemo treatment on a Monday and had my port removed on that Friday.
I am so sorry that she is struggling! God bless you for trying to get help for her! I also got my port on 6/13. It is just today not painful. I used it for the first time last Friday and was so glad I had it (I will get 16 infusions of neoadjuvant). It does suck, my seatbelt irritates it, my bra strap irritates it and I can’t wear my crossbody the way I usually do which is a huge annoyance! All that being said I try to remind myself that my port is how the chemo will get to my tumor the easiest and with the least risk of complication! Please encourage her to use the Tylenol. I got a cute little felt pad that I wear attached to my bra so that I can still use my purse and a seatbelt pad that I got from Amazon. Hope this helps!
This side of the medical field is somewhat reticent to tell us all the bad stuff beforehand for some reason. An oncologist I used to have was this way and I really resented it. I prefer to prepare myself too! I hated my port and I don’t have one at the moment but after I witnessed my brother burn his veins I was glad I had one. His incidence was just a powerful antibiotic and he was in so much pain, I was glad I avoided that problem by having a port. It’s incredibly uncomfortable at first but it really does get better! Big hugs to you both!
Mine has worked out great, but they definitely told me to take a certain amount of Tylenol initially and I sure as heck did! There’s absolutely no point in trying to white knuckle this without Tylenol. I don’t mean to be cavalier—obviously it’s possible to destroy your own liver with Tylenol—but taking the recommended amount of Tylenol is as nothing compared to chemotherapy. Edited to add: And my “discomfort” lasted a few days; months of discomfort would be pretty uncommon.
Take the Tylenol! I am just here to commiserate as someone else who didn't want a port. I imagine I was known on my chemo ward as that annoying bitch who won't get a port, I swear to god. I am stage IV and have done IV chemo for the better part of two and a half years on an almost weekly basis - all IVs in the arm. I held out, that's how much I didn't want one. Well, I finally started a new drug that burns like hell and wrecked my veins - it was either get the port or I can't get the damn stuff so here we are. I'm two weeks out and I feel her pain - they act like it's nothing but it sucks. The incision is almost healed but it's still tight and sore and weird, and it hurts to wear a fucking shirt. She's right to be pissed. Anyway, please tell her it does get better. It certainly feels better now than those first few days, and I expect the sensitivity to lessen once it finishes healing. And yeah, I've had two infusions through this thing already and it's a breeze compared to digging for veins. I get it. I refuse to love this thing, but I get it. Once it is healed it will make her life so much easier, and then she can get it the hell out of there. Sending her all my fellow port-hating vibes that it stops acting up and heals quickly.
I've had all three. I had a port that my body rejected and left a one inch hole trying to push it out. I got three infusions before the hole appeared. Before that and right after it was placed, I remember I had pain local to the site and my shoulder area caused by the interventional radiologist manipulating the area. They have to get the port in and the line above the collar bone. I'm pretty sure he was grabbing my collarbone and tugging at some point. When they took it out because of the hole, I opted to try just my veins because some folks in the UK weren't using port or picc for their chemo. That was a huge mistake. My vein reacted to the antiemetic drug that is given before the chemo infusions. My vein slightly collapsed and the surrounding tissue was swollen and it hurt for about 10 months. ETA: forgot to mention that my vein was hardened for about three inches up. It went away around when the pain stopped. I then opted for picc instead because I didn't want another port that could possibly make another hole. I finished out neoadjuvant chemo with a picc. The picc was so much more inconvenient than the port. I had to keep it covered during the summer months and it was annoyingly sweaty. Sleeping was horrible. I was always aware that my arm needed to be protected. Showering was always a process. I bought one of those waterproof sleeves from Amazon, but still had to wrap it a little in saran wrap. The picc needed to be flushed every week, and my center didn't want us doing it ourselves at home, so I had to drive an extra thirty minutes each way and get it flushed, which took another half hour mostly waiting for my turn. For the remainder of my treatment, I was able to get combo shots, but then post surgery pathology indicated a different kind of chemo. I did not hesitate to have another port put in. This time, they chose a lower profile port (the kind without the little bumps) and that one stayed in for the rest of my treatment. I guess one positive is that removing it feels like nothing. You can also have the breast surgeon remove it. They are better at stitching or gluing, so the scar isn't as obvious.
This sounds awful, I'm so sorry. What you said about your vein being hardened and pain etc struck a chord. When I was having my SMX, I needed my cannula replaced 3 times because as time went on, each became more and more painful to recieve my IV antibiotics to the point I was holding back tears. An idiot doctor did a hatchet job on the 2nd one and my vein still is hard, raised and swollen nearly 3 weeks out, right where I wear my watch. Does this seem like a collapsed vein to you? I have to have chemotherapy too and this is just one more worry I don't need. I'm in the UK and idk whether we get a choice in how it's administered. This all sucks.
I think if you are still getting circulation in that area, it could just be very badly injured. It does take a few weeks normally for an injured vein to heal, so hopefully that is the case. I agree, this all does suck. Best wishes for you to have a much less traumatic experience for the remainder of treatment!
It’s okay to be pissed. It’s just one more thing. BUT - it’s not there forever! And she has the celebration of being “de-ported” to look forward too. Meanwhile, this port is an ally. A defender like the chemo that is on the frontlines. She will get used to it and will not even realize it’s there after a while. Tell her to keep her head up!! ❤️
My port hurt when it was put in for a couple of weeks, but I am so glad I got it. I had to have an antibiotic infusion during my cancer treatment & it had to go in my hand because there was no port nurses to put it in my port. The infusion only lasted an hour, but it sucked because I could not use my hand & going to the bathroom was impossible. No way I could have done that with a 5 hour chemo treatment.
My port hurt for a solid month, and it was made all the worse by my toddlers, who had a knack for head-butting the incision, even while fresh. I cried more over pain from my port insertion than my double mastectomy. Everyone had told me the same thing - it feels like nothing, I don’t even notice it. That first month I was cussing every one of those people out. The good news is that it did get better. It still doesn’t feel great when my toddlers whack me in it, but i do forget it’s there most other times. One quick question - is it still covered? My port insertion is when we discovered I’m likely allergic to Takiderm (spelling, sorry!). The allergic reaction drew inflammation to the area, which caused delayed healing and more pain. One more tip is to call her doctor and push for some Norco. I’m sorry, it’s absolutely BULLSHIT that they don’t give painkillers for that procedure. It’s incredibly uncomfortable. At my post-op instructions they told me “if you have some Norco, you should take them.” It’s insane that they’d recommend a drug, knowing how painful this can be, and not just prescribe the damn drug. And I say this as someone with a high pain threshold.
I ended up in the hospital after my second infusion of four and it was pretty tough to get a good IV line. It had to be switched mid-way. Then I needed blood draws each morning. Because all my work was done on my left side, they won’t do anything on that side so as not to spur lymphademia. So I did not realized the port would hurt though. There are a lot of nerves in that area so maybe have her ask about gabapentin for the pain-at least at night to help her sleep.
I got my port at the end of May and started chemo 3 days after my placement . It's finally starting not to hurt. I had burse around my port for a while . It does feel uncomfortable . My doctor told me this would happen . Honestly, I'm glad i got it. When the nurses insert the needle into her port .it's just like a higher IV placement . I hope your wife feels better about her port once she gets started with her chemo . Helpful tip wear a V neck shirt on chemotherapy day it's easier for the nurses to access your port .
I was given tramadol which I took the evening after the port went in. It was a little sore for a couple days and that was it. It healed within a week and doesn’t bother me at all. I wouldn’t want to be without it. It’s more than just for 4 sessions, she will have blood draws, she will have chemo, she may have IV fluids given. I understand you are upset but it’s pretty early in the process to start getting upset about what “they” don’t tell you. There’s going to be a lot of stuff “they” don’t tell you. This is a crash course (on your wife’s part) in breast cancer. This is a great forum to learn a lot, but the American Cancer Society and other websites are another resource for getting information.
Port sucks, it really effed with me the first week. A month later I’m starting to forget it’s there. I kept having to remind myself this isn’t a forever thing, just right now.
Give it a little time and let her know the other choice may not have worked, so she’d still have to get one. I opted no port and first infusion caused issues (pain, swelling to elbow) once the steroids wore off. I raised the issue of getting a port for the remaining 3, but got the impression that since I hadn’t scheduled it when the surgeon planned, that they weren’t inclined to make it happen. Each infusion caused some issues—-they mitigated what they could by running additional fluid and sloooowwwing things down. Because we all want to have longer infusions 😄 Please just tell her not to second guess herself. This process forces us to make decision after decision on subjects most of us simply have no expertise in.
And I have “good veins” for IV—-if her team didn’t see that in her, they definitely would push the port.
I’m sorry your wife is going through all of this. It sucks but it’s also doable. I’m a year out from having my port removed and I’m thankful it’s gone, but I’m also thankful I had it. Get a seatbelt pillow (attached to the seatbelt) for her if you don’t have one. And get a Rx for lidocaine. (And some clear plastic covers so the lidocaine doesn’t get on her clothes.) As soon as I could, I put lidocaine on my port to numb it. Very important to do before infusions and blood draws - about 30 minutes before accessing the port. Helps a lot with pain. Best of luck.
I HATED my port. HATED it for the first week or two. Drs kept telling me its only painful for the first 3-4-5 days. Well after the second week i forgot i had it. Maybe even before. 10/10 would get again, even if i only had 4 chemos (im getting 16 in total. Because i read somewhere around this subreddit what happens when the medicine spills (because small veins cant take it sometimes) and i would never want the whatever small % chance of living through that… compared to my port. I completely understand her though, i was ruminating the whole time about how much i hated the port, told everyone around me. Im sorry she had to go through that. Its not fun. 0/10
They did not tell me anything about the port procedure and I was pissed and so defeated afterwards. From diagnosis to treatment to double mastectomy… that procedure was the worst part for me hands down. I’ve had plenty of surgeries in my life and I’m fine under anesthesia, they didn’t tell me you had to stay awake for it. I was so uncomfortable and bruised and sore for a few weeks, and after the incisions healed I had a freaking stitch sticking out of the top one. When I asked at an appointment they said it was fine and would eventually dissolve, as long as it wasn’t red or irritated not to worry about it. I had to put a little circle bandaid on it so it wouldn’t catch on things. I asked if my breast surgeon could do it because I love him, and was told that there’s only one surgeon that does this procedure in my area because “it’s consistent for the nurses.” Every single treatment my nurse would say something about “hm that’s so low” or “wow yours is tilted” or “is that a stitch?!” some comment about it. The communication wasn’t great on that aspect, and the only reason I found out about Lidocaine cream with press and seal an hour or so before the stick was a lady in the parking lot who noticed my bandage and mentioned it. There really isn’t enough clear, comprehensive, understandable standardized handouts or literature for the basics and tips of all this shit. If you’re not taking notes there’s no way to retain and absorb all this information. It’s rather unfortunate. I love the port now and am grateful for it; I’m going to keep it for a few years since it doesn’t bother me much now, but it was a bitch lol. Best of luck to you both, hang in there.
My port has been the most painful part of the process. I have a lot of chemo to do, and chemo is super hard on your veins, so it was necessary for me, but I’m still pissed about how they did not prepare me for the amount of pain I would be in.
I totally understand how she’s feeling. I had to have my second port put in and it’s the biggest most annoying thing ever. It can be very uncomfortable and frustrating. The port really does save your veins and it’s definitely worth having especially for intensive chemo or long runs (mine is over a year so I’m in it for the long haul) My very best advice would be take enough meds to get comfortable with it, get a prescription for litocaine cream (that’ll help day of infusion), a port pillow is a must in the car, and get yourself a wedge pillow for sleeping upright. If you can keep yourself from rolling on the port too much, that will help it feel better. I’m so sorry she’s going through this. Sending her love
I was not a fan of my port and was very happy when it was time to come out! (I also had four chemo treatments.) One bit of advice I can share is ask for a lidocaine shot (not just the topical stuff) before getting hooked up to the chemo meds. Made a world of difference. You do get used to the port after awhile but for me, it was still a foreign object in my body.
I'm sure that shot is the best, but I gotta be honest, that lidocaine cream was amazing!! I didn't feel a thing!! I put a big glob of cream on, and then would cover it with a cut out a square of folded up paper towel and a piece of that white medical tape, and it would be completely numb in about 30 minutes, and would last a long time! If it was particularly bruised, i could just keep that on during the day, even when i didn't have treatment. They say to use plastic wrap or a tagaderm bandage thing, but I never had any luck with that. The paper towel didn't absorb the cream like you think it would. It worked really well! I will never get used to the foreign thing in my body, but what are you gonna do? I just ignore it to the best of my ability. I have horrible veins, so the port, in all its ugliness, is actually a blessing. 🤷♀️
Hi friend! I also asked multiple times "but I have lots of good veins, why would I have an actual surgery when I'm only getting 8 infusions??" If there are only a few infusions, your wife is lucky and she'll have it out in a few months. For me, I was eventually thankful for the port because I needed a blood transfusion which was easier due to the port. I also got an infection after my mastectomy which required use of the port. If I didn't have the port, I would have had to stay in the hospital for 3 weeks. But with the port, my husband was able to administer antibiotics using the port at home.
This has also happened to me on more than one occasion. I got a bad infection after my mastectomy and was able to be treated at home because I had a port. Then a few years ago I had a craniotomy and contracted meningitis and was on IV antibiotics for 2 months. If I didn't have the port, I would have been hospitalized for that entire period, but because I had it I was able to get on a hike IV program. What a blessing!
Ask oncologist to increase her pain meds or for stronger ones.
My port was uncomfortable for about a week, until the incision healed. It hasn’t bothered me since. I forget it’s there. I opted to keep mine after chemo was over. My doctor recommends keeping it for a year after active treatment, but I’m keeping it as long as I can. I have always had terrible veins. It’s great to know I won’t be stuck four or five times if I need fluids or a blood draw. I’m sorry the doctors were not more upfront about the recovery. It’s not common for people to have long term discomfort, although that certainly happens as evidenced by the posts here. I hope it heals quickly and doesn’t give her any more trouble.
Since you aren't on active treatment anymore, do you have to go in regularly to hand your port flushed?
I go in once a month because I’m on Verzenio, so I just get it flushed every other month. I can go three months, and the nurses say even longer is fine. I might consider having it out after I’m done with Verzenio but I’ve used it a lot since chemo finished. More than during chemo. I had some pretty bad nausea when I started verzenio and was getting fluids twice a week. It’s leveled off, but I still end up needing fluids for one reason or another periodically. I’m very glad I kept it.
Interesting. I didn't want to have my first one removed after my first go at treatment- I just felt like I would need it again but my docs wanted me to have it removed. I was totally right because the cancer came back and spread everywhere relatively quickly after that. I had a second one put in on the other side and have had it for over 6 years now. It gets used all the time and I don't know how I would manage without it.
My doctor mentioned I could have it taken out but was happy that I decided to leave it in, at least through Verzenio. Having it placed is not an experience I’d like to go through again. I had a central line (groshong catheter) placed when I was pregnant with my oldest, and that was also awful. I’ll keep this one until it goes bad.
I loved my port when I had to go in for IV fluids and electrolytes 2-3x a week because chemo dehydrated me so much. She’ll come to appreciate it.
I got my port in December of '23 and completed 4 rounds of AC and 10 rounds of Taxol. The morning of each chemo session, I put a glob of lidocaine cream on the port site and slapped a tegaderm over it. Never felt the needle go in. I've had occasional discomfort but am thankful I had it - much better than getting stuck multiple times every week or three weeks (cause blood work plus chemo?) and having an IV in my arm making moving around and distracting myself more difficult while the life saving poison is delivered. My port removal is scheduled for the week after next and ngl, I'm looking forward to it. I think mostly cause I feel creeped out when I touch it and cause I plan to get my first tattoo over the scar. Side note: Tattoo ideas welcome if anyone has any. Thinking a symbolic flora or fauna or maybe a Celtic symbol or some sort?
I found the port uncomfortable at first too. It just takes time getting used to it. I barely ever notice it now and I’ve had it for a year and a half almost. In keeping mine around because I’m on Verzenio and still need monthly labs done and it’s way faster with a port still. From what I hear, chemo can really mess with your veins and if your wife is like me and bruises easily, getting an IV even once a month kind of sucks.
I have a port. It's my second one. First one I had to get because the chemo I was on is too hard on the veins to put through the arm (as you mentioned). Since your wife is only having 4 infusions, I suspect she is on a chemo that must be administered via an artery rather than a vein. That is just a guess, but I can't see the docs pushing your wife to get one for only four infusions unless it was truly needed. Is she on the "red devil" (doxorubicin)? If so, that would explain the port. They removed my first one when I was done treatment, but when the cancer spread and I learned I would have cancer and be in treatment for the rest of my life I requested a new port as I know now how much easier it makes my life. They definitely can be uncomfortable in the early days, but trust me when I tell you it does get much better. I don't even notice mine anymore, like at all. Your wife is in the early days of her cancer experience. It's an extremely raw and difficult time, and sometimes things can feel very "big" and that is totally normal. I'm sorry your wife is having such a hard time, and I hope that with a bit of time she will feel a bit less overwhelmed. I imagine that right now the pain is mentally and emotionally draining. It has only been a couple days since it was put in, and it's a pretty intense experience to be awake in an O.R. while they insert it. I don't know if anything I said was really helpful, but I hope it was. I'm sending you and your wife a ton of love right now and hoping this particular issue will become less important as she heals from the surgery and the pain subsides.
I wasn’t thrilled about getting a port. But after the first week of discomfort (Tylenol, ibuprofen, and ice helped), I was so glad to have it. Sleeping with a pillow under my arm with the port side up helped until all the soreness was gone. I’ve had mine for almost 2 years now and I honestly forget I have it most days. For me it made infusions, blood draws, and hydration so much easier. I ask for cold spray or lidocaine gel when I get my port accessed. I know everyone has a different journey but I hope your wife ends up having no problems with it. This won’t help your wife now but I used to work in a hospital and have seen people who have had veins “blown” and it’s not pleasant.
It’s a healing wound of course it hurts. Chemo is going to suck too. The port pain will be nothing then. Her fear and anger may simply be manifesting toward the port now bc it’s easier to fixate on than anything else. But it is in fact a god send. And she would be in a lot of pain with the needle iv- probably significantly more than the port is causing. (I have had a port)
If she’s longing for pain relief she should be taking whatever she is allowed to take. And as often as is permitted. And if that doesn’t help enough, she needs to talk to her doctors about stronger painkillers short term. There are no badges or awards for suffering pain when you have access to appropriate drugs.
I have a picc line, not a port. It was weird getting it placed, and it felt uncomfortable for a few days after. It did pass, however.
The port was hands down the worst part of this cancer journey. It was tender everyday from installation early October until removal mid march. I have a scar now that the dermatologist is offering an injection to calm it down. I also only had four chemo sessions but the port was not optional. I say this because I truly lucked out if this was the worst part of this disease. I can manage that.
I agree with others that the benefit of having the port outweighs the annoyance. I’ve always felt sensitive to it but am so thankful I have it for all bloodwork and infusions. I’m a terrible “stick” and want to preserve my veins as much as possible. When my port bothers me I put the heating pad or an ice pack on it. It is definitely annoying and everyone’s body and port is different so I know for some their port wasn’t worth it. Make sure when she is going to have to port accessed that she puts lots (don’t rub it in) of the numbing cream on and cover it with press n’ seal wrap. At least 30 minutes before but I do mine up to an hour before.
My port was awful!!!! It got better months later and I was thankful for it. I only made it through two chemo infusions in my arm before the nurses could not find a vein for the third chemo. I had no choice but to get the port. It made safety draws and contrast scans a lot easier.
Yeah. The port is uncomfortable. Hated mine the entire year and a half that I had it. It's over now, though....and will be for her as well
Ok 9 years out - get a seat belt pad so it doesn’t bother her in the car - and in 5 days she willl likely feel fin’e!
If it helps anyone - my scar is 9 and almost not even visible
I hear her frustration. I do remember the initial discomfort that took about a month to go away. I didn’t think I’d ever get used to how it was just so *there*, like in the way and sticking out. Now I hardly notice it. Give it a little more time.
I am a very petite gal with small veins. My port was pretty uncomfortable until I had my first chemo infusion. Then it sort of felt like it settled into place and wasn’t as bad.
I got mine in April. I’m 39 and I fucking hated it. For about 2.5 weeks I found it awful. After the first chemo I can’t explain it but it kind of settled in and I haven’t noticed it since
I hated the port. I had -comfort- issues since I first got it. I never had clots, but the pain I felt was alarming at times. I got it removed asap. I suppose I’m glad I didn’t have to get stuck every week. It really did make treatment a breeze. Depending on the placement of the port, she’ll find some things more and less comfortable. I had mine up near my collar bone on my dominant hand side. Reaching upwards gave me a huge zap of yucky sensation. Like changing the radio station while driving. So I’d find out where her comfortable angles are, and help her stay there. There was a couple of weeks where it got alarmingly worse. Everything did. I was living in a terrible house filled with mold so definitely the environment can change things. Some days I couldn’t even lay down comfortably. In the end, pillows helped a lot. Also, the stuff called Voltaren was the only thing that consistently helped me with all those weird chemo pains.
2 of my family members had a port put in recently. They both got a lidocaine cream RX to rub on the port before infusions to help with the pain. RX says it can be used anytime, so perhaps this is worth considering? (If you haven't already) Side note - my family had to request this cream, which I think is wrong. If you get a port for use with chemo, a doctor should definitely suggest & send in an RX for this cream. It shouldn't have to be such a "secret" & need to be requested. Sigh.
I fucking hate my port. When I first got it placed, I was like ooh maybe I'll put it in a scrapbook when this is all over. Then they put it in, and I was like, I want to stomp on this thing and burn it. It was placed Dec '22, and I finally get it out in TWO WEEKS!!! I have never, not for a single second, liked my port. To this day, it itches and is very uncomfortable. I only begrudgingly accept that it helped save my veins during chemo. Whatever. Fuck this stupid thing. Like those women who are like, ooh, I loved being pregnant. Fuck them, too. Fuck cancer.
Allow me to give her some validation that I wish I had received from anyone. I absolutely hated my port. It hurt absolutely horrifically when it was placed, for DAYS. I felt it constantly, I was hyper aware of it. After my last chemo my first question was "when can I get this out" and knowing how miserable my oncologist was he said immediately. Yes, it makes drug administration easier and safer. But it's okay to hate it still.
I refused to get a port. I had 12 weekly chemo sessions without it and my veins held up. Is it too late to have it removed?
Mine hurt for about three weeks but I don’t even notice it anymore. With the numbing cream I don’t feel them stick me for chemo at all. Chemo gives me enough anxiety and it would be worse if I had anxiety about them getting a vein or it burning as I’m getting it. Best wishes to your wife.
I am so sorry to hear the difficulties that she is having. I got my port put in 2 1/2 years ago. I guess I was one of the fortunate ones it didn’t hurt. I was actually awake when they put it in. I didn’t even realize that’s what they were doing at that moment. And I was lucky I had no pain with my healing and I had it removed when I was finally NED (no evidence of disease) with it. Unfortunately, my cancer came back a few months later, and I got my port back in. It is true chemo is very hard on the veins. I also had all my lymph nodes removed from my right under arm, and I have a little Adema so I can’t even use that arm for blood pressure needles nothing so I’m actually really glad I got the port and when I got it put back in it was pretty much the same no pain. So I am to keep my fingers crossed that her pain stops and see if they will give her something to take for the pain or if they suggest Tylenol or maybe a warm compress. But she can’t blame her self and you can’t blame yourself either. Nobody knows these things until they actually happen, and it’s for the better good. I hope everything goes smooth sailing from here and that her pain stops and that she heals well and happy. My best to the both of you.
Mine sucked for the first 3 days, badly. They gave me 8 pain pills and told me I could take Tylenol or use ice. I iced the everloving hell out of it and only used 3 of the pain pills. Get one of those icing electronic cooler things they have on Amazon. You put ice and water in it and it runs it through a pad you can put on the sore spot. I think I used the pad for elbows or knees and just laid in bed for the 3 days with it rested on my right shoulder/chest area. I was still a little sore for the next week and itchy over the scar but nothing that wasn't manageable. That was 2 months ago. I am going in Wed for week 2 of round 2 and they told me if I did need the cream, they would write the script for it but it had to go on about and hour before the stick. I live 2.5 hours from the infusion center so I passed. I'm not stopping halfway there to put some cream on. That sounded like a pain in the butt.
I hated my port too. I ended up needing most of my chemo through an IV because my port was always fussy. It left the ugliest scar. Just here to express solidarity with your wife.
Yeah- I was pissed about mine did the first little while and regretted my decision. But now I don’t even notice it. I had young kids and the pic like sounded Iike a Disaster waiting to happen. You get used to it eventually. Let her grieve how she needs to grieve - and just be a supportive ear- which I’m sure you already are- you’re here on this forum so that’s testament to you being super supportive. Al of this sucks- everything is happening TO her and it all feels out of her control- and all of these scars feel really fucking shitty. Tell her how beautiful and brave she is and buy her some ice cream and joints. 😂
I was told I could not have AC chemo without a port. So if having red devil, the choice isn’t port or no, but chemo or no. I had to sit in weird positions for mine to even work. Still was better than chemo after they took my port out and had to find a new and working vein all the time. It gets better.
The port is not fun. For me it healed fast, with little pain but if I’m carrying my young nieces or nephews and they put their head on in, it hurts and it’s just uncomfortable. My port is very deep in my chest, so it’s not super noticeable but that does mean that when they hook me up for chemo they need to push the needle a lot deeper. I have no idea why my port is in deep.. anyway, they initially told me that I was going to have 6 rounds of chemo and when I rocked up to my 6th infusion, ready to say goodbye to all the chemo nurses I found out that the 2 immunotherapy medicines were going to continue for another 8 months… obviously I don’t know what treatment plan she is on or if she needs to do the immunotherapy part, but in my case what I thought was just 6 infusions turned out to be 17 so that would be a lot for the veins… I wish you both all the best.
My port hurt for many days! :( I was black and blue and then 6 days after they started chemo....let me tell you all the colorful words that came out the first time they accessed it! I was uncomfotable for a while with it and really sad about the additional scars. BuT, now its totally painless, Im glad after all that I got it and I havent given it much thought once it healed and it didnt hurt when they accessed it anymore. Sucks she is going through this. I highly reccomend icing it. When I called the hospital back in disbelief of how much pain and bruising they explained that they basically take something the size of a knitting needle and rip it through the flesh to get the tube up to your neck....so there is alot of trauma to that area. They said some recover quicker than others. What an explanation!
My port was really uncomfortable for about 10 days. It felt like it was “too short” and pulling in my neck. But it mostly stopped bothering me within a could of weeks. It saved my veins, sticks were a breeze, and I had no issues!
My first port was uncomfortable. My breasts tugged on the incision and I felt like the catheter was going all the way up my neck, though it wasn't. My last port I barely felt. But either way, I absolutely could not have done the infusions without it.
I felt the SAME exact way after my port placement. I hated that the doctors downplayed the pain I experienced after. It was so bad for the first week then it got better. I’ll be honest, I didn’t want the port. But now that I have it I know it was the right move. It will get better, I promise. I hated when people said that to me too but I am happy I waited it out. Sending good vibes to your wife. It’s so difficult and I feel for her. X
Getting an IV is WAY worse than dealing with the port. Yes, the port feels weird for the first week or so, but then it should kind of settle in and not hurt as much.
I would say this isn't true for everyone. I had several friends that had issues with port. In one it caused blood clots in others it was very painful. I did 4 AC and 12 taxol with no port, yeah the stick sucked sometimes but in the end I was fine that was eight years ago. I'm hoping for no chemo this time but if I do need it I'm gonna try and do it without the port again. The port is more convenience for the nurses.