Port-a Cath pain?

TinaLee

I had my surgery today. A partial mastectomy and a Port-a Cath installation. I have been taking my pain meds as prescribed, but my Port-a Cath is much more sore than the surgery site! For those that have ports, did you have a lot of soreness, how long did it take for that soreness to go away? Will it always feel sore to some extent?

Fllorik

Hi, The port site will be sore for a few days. Remember they pushed and pulled under your skin. but if the pain continues through the weekend, I would call the doctor on Monday. Maybe just a check of the site would be a good idea. You don't want an infection to occur. Have a pain free weekend!

judyr

Hi TinaLee,

Mine was like a mack truck ran over my chest. It was very uncomfortable. It did get better but it took a while. I would guard it against my kids bumping it with their heads when they sat in my lap. Months later I definately knew it was there but it didn't hurt and now(one year later) I forget it's there.

I don't mean to make it sound bad, it was very doable but it is normal I think for it to hurt.....

blessings,

Judy

TinaLee

Wow, I woke up this morning and it is not only hurting at the site, but radiating out a bit from there and it hurts to move my arm. I think it is normal pain though, and not infection or anything. No fever or undue redness. Just very sore.

I can understand the Mack truck reference. I think that truck took a drive through my bed last night and drove over me a few times. Ugh.

Well, I'm glad to hear it gets better. Thankfully I have plenty of meds in the meantime to help take the edge off. 

lionessdoe

I had my port put in last Tuesday. I didn't sleep a wink all night. 1000 mg of vicodan didn't even touch the pain. It is tolerable now, but today I saw a huge yellow bruising beneath it. Something got disturbed alright while implanting it. The little brochure that comes with mine warns of various complications. I will be back on tonight to list them all if I can't find a link. Pain spread to my shoulder neck and arm too, but that is subsiding as well. If it doesn't, there is possibility of nerve damage. I think it is called brachial plexus injury.

Look for me later.

mthomp2020

Liked the Mack truck reference!  I said it felt like I was kicked by a mule.  They do dig around a bit under the muscles to place the catheter.  I was really only sore the day they put it in, though.  Next day it wasn't bad.  Mine was done under local with conscious sedation.  I remember when I woke up completely, the back of my shoulder hurt!  So they do tweak some muscles around.

lionessdoe

Possible complications of the BardPort Implanted port:

Air embolism

Bleeding

Brachial plaxus injury

Cardiac Arythmia

Cardiac Tamponade

Catheter or port erosion through the skin

Catheter embolism

Catheter or port occlusion

Catheter occlusion, damage or breakage due to compression between clavicle and first rib

Catheter or port related sepsis

Device rotation or Extrusion

Endocarditis

Extrvasation

Fibrin Sheath formation

Hematoma

Hemothorax

Hydrothorax

Intolerance reaction to implanted device

Inflammation, necrosis, or scarring of skin over implant area

Laceration of vessels or Viscus

Perforation of vessels or viscus

Pneumothorax

Spontaneous catheter tip malposition or retraction

Thoracic duct injury

Thromboembolism

Vascular thrombosis

Vessel erosion

Risks normally associated with anestesis, surgery and post operative recovery

sharebear

I was very bruised from my port. They were going to access it the day after for my chemo and post poned it for a week. Even the dr. said it just looked to irritated and they didn't want to put my through that. They put me on antibiotics for a week just in case. There was no infection but it was very sore. My shoulder and arm was very sore also and they told me that was normal. It does get better but it took me a couple of weeks.

I had my port removed on 10-5 and it's still sore again.  Once again, bruised, my arm and shoulder are sore too.  It must be the muscles and such that are manipulated. I'm sure it will heal again.

It will get better and the port is worth it.

Sharon

jhals57460

last year i had a port placed.a few months later it clotted off and we took it out. jan. of this year we put in another.it is working ok.my only problem is that it is still very sore and at night i am constantly awake hurting and turning from side to side.it is not red or swollen.it just hurts and hurts. they said to apply warm cloths,but that doesn't help. does anyone have any suggestions?thanks hkp

Anonymous

Of all the pains I had during all of my surgeries and treatments, the port pain was different and the most memorable. It took "forever" to feel better. I think part of it is that it's right at the skin and is affected by movement of either arm. Also, sleeping was very hard! I found that sleeping on my stomach was easiest. Sounds wrong, like it would hurt the most, but I think it isolated the movement of arms or neck more.

I understand your concern and feel your pain (sorry . It does get getter with time. Try sleeping on your stomach if you can. ((hugs))

catlover44

Oh, that thing is awfully annoying, isn't it?  I'm 3 1/2  weeks out from the surgery when it was installed, and today was the first day it didn't really, really bug me.  It seems to pinch and stab at the muscle kind of in front of the armpit if I move my arm in some way that makes it angry--is that what you're feeling?  I end up babying that arm as much as the mastectomy side, causing me to be stiff, which doesn't help matters!  It does seem to be getting better---as with everything so far, slowly.  I asked my surgeon about it today, and he said after about 6 weeks I shouldn't even notice it.  I think he's being a bit sunny about it because how can you ignore the thing, but as long as it's not hurting, I can deal with it.  Hopefully yours is getting better all the time too.  (I had a chest tube inserted right beside it for some insane reason due to a pneumothorax that happened when it was installed, and he says that scar tissue from that is aggravating things.  Yikes.)  Those side effects lionessdoe posted are scary as hell, by the way!  For future reference, how do you know if it "clots" or "occludes", etc?  I'm beginning to think I'd rather just have the arm stick every 3 weeks (I haven't started yet)....

StaceyR

I'm relieved to read that other people have had port pain, 'cause I had mine put in yesterday and there were "complications" during the procedure. I am having a hard time distinguishing between pain from the port and pain in my lung.  Right now it hurts a LOT.

Apparently in about 1% of cases, the surgeon nicks the pleural membrane around the lung, and wouldn't you know it, yesterday was my lucky day, and I suffered from a partial lung collapse - a "pneumothorax".  I had to have a portable chest tube put in, so I came home from the hospital with tubing taped all down my arm that allows the air to escape from around my lung while it repairs itself.

Last night the pain was so bad I took myself back to the ER.  The people putting the chest tube in were about to leave for the day and kind of neglected to tell me what kind of pain to expect, didn't give me anything for pain, and didn't really explain how to care for the tube.  In my partially sedated and frozen state yesterday I failed to realize things would get worse before getting better.

Anyway, since I'm awake at 4:30 in the morning I thought I would share and vent a little.  This is not cool.  I really hope the Percocet kicks in soon! 

abbadoodles

Oh, these stories are just awful!  Luckily, although my onc told me I "could have a port" if I wanted one, my bs said "no."  From prior experience he said not everyone needs one and I could start chemo and see how it went with my veins.  That way, I wouldn't be having any unnecessary surgery and/or inserts (foreign objects installed) and therefore, possible complications.  I wish everyone had the same options!

(BTW, I had 4 DD A/C and never had a problem.)

I did read on these boards, sometime last summer, the story of a woman whose port was very painful and she complained and complained but nothing was done but some pain meds.  At some point, and I don't remember if it was when she was in such extreme pain they decided to remove it or move it, the port was removed and the pain went away immediately.  Seems it was resting on a nerve or something.  I wish I could find it in the archives.  Maybe someone else remembers the incident.

susan_CNY

I sure can associate with the port-a-cath pain, I had my 1st chemo infusion an hour after the port was inserted, the poor nurses were shocked and scared to use it. I was given nothing for pain and ended up with a bruise the size of my hand that reached down onto my breast, then of course the seatbelt of the car pressed on it as well as my then 18 month old. However it was easier to use than veins every time I guess, I had the damned thing out (under sedation) a week after last infusion and still feel a weakness there 5 years later. I hope you heal fast and your chemo time goes swiftly for you, my best friend xanax helped me immensly and we keep in touch to this day

catlover44

StaceyR, hang in there, girl!  I had the exact same thing, except I didn't get the portable chest tube--they kept me in the hospital plugged into the wall suction (with a portapotty nearby since I couldn't reach the bathroom...oh joy).  I think 1% is not a correct estimate of how often this happens, since every medical person I've encountered since I got the pneumothorax seems to think it's common.  I'll bet you're feeling a little better already--my first night with the thing was agony, and even though I've always been (I thought) pretty tough at handling pain, that chest tube had me in tears and IV morphine wasn't even touching it.  So I UNDERSTAND, even though that doesn't help your pain!  I had it in for 3 days total, and after it was removed, there was a sharp pain in my side that lasted for a couple of weeks, so don't be alarmed if you have that too.  These port-a-caths are supposed to make things easier for us, right????   OK, just checking.

catlover44

By the way, I didn't mean to scare you about the lingering pain from the chest tube...it's nothing like the pain you have on that first day.  It gets better!  I'm sure you've figured this out already, but sleeping virtually upright helps.  I borrowed my daughter's huge u-shaped body pillow and it supported me all the way around.

StaceyR

Thanks, catlover, for your advice.  I'm glad to hear I'm not the first to endure this.  It's funny you mention the sleeping position thing - I even specifically asked the doctor that and they said it wouldn't make a difference, but I definitely feel better in the vertical position.  I'll be happy when I'm done with miscellaneous surgical procedures, healing wounds, and complications!  Let's just get on with this chemo.

catlover44

Stacey, we should stay in touch..sounds like we're having very similar circumstances!  I can't believe your dr. said it wouldn't matter how you sleep....I felt like I was going to smother lying down flat, plus the persistent stabbing I had in my lung was worse that way.  I woke up the 2nd morning after having the *#$#* tube removed, and when I sat up I thought I was going to have to make an ER trip (our town's ER is not where I want to go)--I just kept shallow breathing and grabbed a Lortab.  After a few hours it finally eased up.  The only good thing I can see from the whole incident is that it makes the mastectomy seem like a breeze in comparison! 

This sounds weird and you probably shouldn't do it right now, but during the 2nd week when I was still having just a little pain in the same area, kind of like a "stitch" if I'd been running, I'd hold my breath (thinking it would help squish the lung back where it belonged...???), then when I let it out, it actually felt better.  Disclaimer:  Not medical advice, just trying whatever I could!

When are you starting chemo and what kind, how long, etc?  I have to have a petscan, ab ct scan & EKG tomorrow, then I meet with the onc. Friday to see what kind of punishment she's going to dole out.  I already know she's wanting me to do 6 rounds of TAC, which is heavy duty.  I'm planning on waiting until we get back from vacation in mid-July to start so I don't have any other medical surprises occur while I'm 8 hours away from home!  (I'm not sure how to PM because I'm new to this board, but we should try that so we don't gum up the topic at hand!)

StaceyR

I sent you a PM, catlover

LibraGirl

I just got my port today and the procedure went fine; however, my cath seems to go up into my neck instead of the chest.  Has anyone else had it placed this way?  I guess the good thing about this is it might avoid the penumothorax issue (or not?.  Right now, I feel pretty good (procedure was this a.m.), but my neck feels a bit strained and I don't have full range of motion with it yet (maybe from the dressings more than the device itself).  So far have only taken regular tylenol; saving the big guns (T3) for if I really need them. 

StaceyR - sorry to hear you've had such a bad time of it with the implantation.  It is especially frustrating when you don't get the advice/info you need from staff.  I hope the meds have kicked in . . .

I was able to sleep on my back okay (I am lucky that I can sleep in virtually any position) and on the other side.

My concern right now is more in the healing process.  I'm told I have to keep the dressings on for 2-3 days and not get it wet.  I always have trouble with this.  Then shower with it covered in plastic wrap (this did not work for me for my lumpectomy or partial mast.).  Anyone have any suggestions?

catlover44

Libra, I don't know how they put those crazy things in or how they decide where they're going to be.  I've had mine in for about a month (haven't used it yet---that comes next week), and I have noticed that although it seems to be sitting kind of under my collarbone, right at the edge of the armpit, it sends shooting pains in random directions if I move in some way it doesn't like.  It mostly digs into that muscle by the armpit...keeps feeling like it's doing to actually wind up under my arm!  So maybe yours is just causing you pain in your neck rather than actually being there?  I know these things are supposed to make our lives easier re chemo, but I can't wait to get mine out!  That won't be until the end of summer, alas.  I wish I had a good answer for you.

I share your aggravation about trying not to get your bandages wet.  I'm never very successful with that either--when I was trying to do it, I ended up washing my hair in the kitchen sink, and just bathing by washing all around the bandage and trying not to drip on it.  I never felt clean!  Luckily, my surgeon likes to use the glue instead of lots of bandages, so for the actual mastectomy I didn't have to worry much after a day or so about getting the incision wet.  It was nice to get the bandages off the drainage tube area--it was very hard to keep that dry.  I'll never take a good shower for granted again.

lynn08

hi,  have had my power port for 5 months and it still pulls and hurts its sits close to my arm-pit I have 5 months left of herception chemo is done and am thinking of having it removed for the last 5 months of herception has anyone else have there port removed while still receiving herception(every three weeks) thanks , lynn

Rovergirl

I'm having my porta-cath installed on Wed. with my first infusion to follow.  These stories are scaring me .... has anyone had a non-painful experience with the porta-cath?

LibraGirl

Rovergirl - don't panic.  Mine is relatively painless; just uncomfortable.  I've been assured I will get used to it quickly.  Someone on another message board told me that after a month she forgets its even there.  Right now I have more discomfort from the staples and the itching from the dressings (I am super sensitive/borderline allergic to most dressings), which I will probably take off for good in a day or so more.

I will say that where I had mine done (BC Canada) I had little consult about the device or procedure before it was done.  The surgeon was not my bc surgeon, but a specialist in implanting devices like the pc or pacemakers.  It would have been nice to have had a pre op consult where we could have talked more about the size of the pc, placement, post-op expectations etc.  I think he did a good job, but it sounds like there are choices about placement and I wasn't given much info about the pros and cons of these.  If you have the opportunity try to find out as much as you can and get what's best for you.

Lynn08 - why did yours get placed so close to your armpit?

catlover44 - I think you're right.  The cath goes up over my collarbone and then disappears, so probably it is  not that diff than everyone else's.  I seem to get a pulling at the back of my neck when I lift my body up or down (like getting out of bed or lying back on the couch).  It's not horrible, but it feels funny and makes me worry that I might be straining something.  Hopefully it simmers down.  I wonder if yours is sitting on a nerve, which causes the shooting pains?

On a more positive note, I have a bandage solution!  Because I had a semi-allergic reaction to the standard post-surgery dressings, I went to a local clinic to address teh reaction.  The doc there not only gave my handfuls of cream to address the rash, he redressed the incisions with a clear plastic bandage that so far doesn't make me react, *and* is fairly waterproof.  I tested it in the shower this a.m. (heavenly!) and everything stayed dry.  There was just one gap in the bandage around my small neck incision that I should have checked and taped first, but otherwise it stayed stuck on nicely.  The brand is 3M Tegaderm.  I didn't know they could use use glue!  It's good to hear that you didn't have the extra stress of keeping the mast incision dry.  

Flasparr

I had the purple power port put in  Nov. 2007 for my chemo.  I had left lumpectomy earlier for stage IIB, triple negative IDC, BRCA 1+. I was always aware it was there, and bumping it somehow was always uncomfortable.  The port sits about 4 finger widths diagonally from the notch in the neck at your collarbone.  The catheter threads up into my right neck.  The vein holding the catheter has become very firm and stiff.  The whole set up, while never being one that I didn't know was there, has been tolerable until lately.  It is feeling tender, and like hairs getting pulled under my skin all the time where the port is.  I finished chemo in Feb. 2008, then did radiation for 6 weeks.  Now I'm getting the port removed (surgeon appt. today) so the ugly bump and the discomfort is gone.  I really think I am starting to reject the port or developing infection as I have episodes of joint pain, nausea, and general malaise for the last month as the port/catheter have become more tender.  My onc thinks it's "all in my head" and wants me to keep the thing in.  He did give me the referral back to my surgeon for removal, so he is supporting my wishes.  Guess the post removal tip culture, port culture, and condition of any fibrin formation will tell the tale.  Should I have recurrence of tumor in the future, I will have bilateral mastectomy and radiation, no chemo, so there is no reason to keep the port.  I am having bilateral salpingo-oopherectomy/hysterectomy 7/8/08 due to high risk ovarian CA due to BRCA status.  My veins are good enough that they can access OK for surgery without needing the port.  I have felt that I am in charge of what is done to my body from the start of this whole thing, and I don't want to keep a foreign body in me that I don't need any more.  It's tempting fate in my opinion, and that's the opinion most important.

Bottom line:  the port for chemo is probably the most convenient way to go, but not the only way.  It isn't something that you forget about all the time.  If a medical professional tells you that, ask them if they've had one themselves to be able to say definitively.  I am one, and I've had one; and they aren't something to consider whimsically.

NancyD

Rovergirl, I've had my port in since late February. After the initial minor operation, I've had no pain, and no problems with it. In fact, I've become so oblivious to it that one morning as I woke up, my hand brushed against it and in my haziness I thought, "Oh, damn, another lump..."

Of course, you are going to hear people complaining about theirs on this thread...that's what it's about. But the vast majority of us with ports have NO PROBLEMS whatsoever. 

catlover44

I second that Nancy--aside from just discomfort as my muscle realizes it's going to just have to make friends with the thing, it's getting much better.  I had my first chemo tx today, and I was so dreading how it was going to feel when they accessed it, but it was FINE.  They sprayed some freezy stuff on me and went right in.  I think it's the idea of where it is that sounds like it would be painful.  I sat next to a guy getting his infusion straight into his hand, and I was very glad I had the port.  I hope the other 5 visits are smooth too!

swimangel72

I'm so happy I'm not alone complaining about my port! It was installed in the hospital during an out-patient procedure by an interventional radiologist (whom I never met - I had no consultation concerning different ports, locations or anything. I've never had any follow-up with him at all - only my onc and PS have been checking on it.) The port was implanted into my chest with the catheter going up, over my collarbone, into my neck, about 5 weeks ago. It took about 3 weeks for the pain in my neck to disappear. The surgical glue they used irritated my skin - as did the steri-strips. I had my second infusion through this port a week after it was installed - and after that, the incision opened and oozed - prompting my PS to put me on 10 days of antibiotics. My 3rd and 4th infusions had to be done through a vein in my hand - NOT a good thing because I'm on Navelbine for four months, which is very dangerous to your veins. Unfortunately, the port still appears infected - and my PS won't put me back on antibiotics. They want to wait to let it heal itself with just Bacitracin ointment. I believe I see the incision looking a little more closed - but now it's hurting me - sigh - and I get down thinking by the time this stupid thing is healed, I'll be finished with the Navelbine! All the time I told my onc that I didn't want a port - but they said it was very important not to burn my veins. Once again I feel like I'm taking 10 steps forward, then 20 steps backwards!

Rovergirl

I had a good experience with my port-a-cath insertion.  The staff gave me a thorough briefing on the device and the procedures.  The physician inserting the port has a port named after him -"The Hickman" used for bone marrow transplants.  I have some serious bruising but very little discomfort.  I had my first chemo infusion a few hours after the port insertion and that went well too.  Yesterday was a big day for me and I was very nervous but it overall it everything was fine.  The Seattle Cancer Care Alliance rocks.

LibraGirl

Glad to hear it went well Rovergirl!  I had my first infusion on Thursday and had no problem with port-o-cath pain.  Just let deep breath out on insertion and only felt pressure.  So far glad to have it. The general discomfort is getting less and less each day.

catlover44

Swimangel, what a saga you're having with your port!  I think I'd just ask them to take the #*%$ thing out if they aren't going to be using it.  Mine had pretty much settled down, until last night when, for no apparent reason, it started poking aggressively into a muscle/nerve (? I need an anatomy book ?), and I could barely move that arm without stabbing pains all around the arm & shoulder.  Arrgghh!  It was better when I woke up this morning, but I've been babying that arm all day for fear of it doing it again.  I won't even try to sleep on that side for the same reason.  I hope it's doing much better for you today.  What is Navelbine, by the way?