A little tip if it is sore - Emla cream sort of dulls the pain. It is available in many chemo rooms or you can buy it at the chemist.
I had mine fitted end of July prior to first Tax. Chemo nurses couldnt access my veins and felt they werent up to chemo although worryingly everyone else - CT/MRI/anaesthetist - have all managed with no probs before and since.
Fitted under local in theatre with slight sedation but at a level where I remember it all and chatted to the doctor all the way through. Was very pleased with the procedure until local wore off. I had to visit GP and get tramadol as had intense shoulder pain - in the ball and socket joint. This lasted about a week and was very intense. I was told it was referred pain but it felt like someone had wrenched my shoulder out of its joint (although I knew no-one had pulled my arm in reality)
First chemo through it was fine - a huge relief and bloods before second chemo were okay too. Two days later though I felt bruised and it hurt when the needle went in. Chemo nurse has given me the numbing cream they give children for blood tests to put on an hour before next chemo.
It is still better than vein access but does cause me constant neck and shoulder pain. Everyone else I have spoken to has been more than happy with no pain so I think I am more the exception than the rule. Will still have one on balance of problems/benefits - procedure itself is what scared me and that was a doddle!
I'm having a portacath fitted in the next two weeks in readiness for my next chemo session. Has everyone had them done under general anaesthetic? The Marsden said they do theirs under a General - which to be honest, i'm really pleased about - I don't want to be awake for anything!!!
I had so much trouble on my first chemo visit with my veins that i'm actually looking forward to having one fitted!!
I've had one since February and not had any problems with it, except it is at a funny angle so there's a bit of fiddling about to access it and it can be sore while they're doing it. It was sore for the first couple of weeks after fitting too. But as has been said, much less hassle than playing hunt the vein.
I've had chemo every 3 - 4 weeks since I had it put in and it's flushed & hep-locked after every treatment. I understood it had to be flushed every 4 weeks too, but I'll be having it removed once I'm clear of this last cycle of chemo anyway so I won't be getting to that point, hopefully. I'll be glad to get rid of it - that lump in my chest and the visible tube running from my neck under the skin is a reminder of what's going on that I won't miss.
Hi all - especially Peacock
Checked with my hospital here in France and they told me that they never flush Portacaths anymore, as it doesn't make it difference.
They also told me that this has been a standard policy in all French Public Hospitals for the last three years.
So perhaps there are different types of Portacath and this only applies to the newest ones?
Mine was fitted 6 months before it was ever used and all I was ever told most emphatically was not to 'fiddle with it' (as if)and 'it might set airport security devices off' (of the three flight I have taken with it in situ, it has done so just the once)
Food for thought.....
Hi, glad that you had some helpful info from the surgeon. Not surprised that you've had lots of pain with all that going on!
Sorry to confuse everyone about chemo bit. Whether it is the bone marrow injections or effects of chemo I have found both the areas around the mastectomy and portacath feel really tender the night after chemo and for the next few evenings. Having said that it also feels tender around my jaw and shoulders. Apparently I'm really sensitive to one of the FEC drugs, so just put it down to that. It goes away thankfully within a few days!
Good to hear so many positive things about the portacath.
I decided to ring the surgeon's secretary this morning to see if she would ask him about it and was surpised when he rang me 5 minutes later! He was really nice and said that it was some nerve pain I was experiencing but nothing to worry about and it would settle down.
He said there was a problem though in that the seroma I have goes right up to my collar bone!! How bizarre! So basically the portacath is sitting in the seroma so he had to stitch it in place. He said it was very unusual and that infection risk was high. Unfortunately he couldn't put it in the other side because I'd had so many blood clots in that vein.
Oh well, nothing to date in my treatment has been straightforward at all. Every step of the way I've had problems and it's hard to keep positive. I'll be keeping everything crossed that this works out okay and praying hard too.
I had my portacath fitted last June under a local just before my first chemo.
It was a little bit uncomfortable for a few days, and ached a bit so was difficult to lay on my side where it is.
It has been no problem since, its flushed every 3 weeks every time I have Herceptin and the nurses always ask me to breath in, breathe out, breathe in again when they insert and remove the needle into it, so it is never really a problem.
Having said that, I don't call it my NBF, and will be glad if I can have it taken out after my last Herceptin finishes.
I'm surprised Bahons that you don't get yours flushed.
It will settle down Elinda, and will at least save your veins from a lot of jabbing and poking.
Hi Elinda & all
Mine's (well and truly) buried in my recon side and hasn't given me any problems, really, altho' the nurses sometimes have trouble finding it...
...Altho' my underarm gets a bit puffy for a couple of days if anyone nurks around with it....
Some other ladies I've met have said that theirs can be uncomfortable and possibly even more so if you don't have much spare flesh...
I've had mine 18 months and it's never been flushed - have I got a different type to everyone else?
I think you should mention the pain and discomfort - I think they can move about a bit.
I think they're brilliant - why they don't fit everyone with a port at the same time as their surgery, I'll never know. It can only be the cost....
Hope all goes well for you on Monday.
Hi Elinda, has mine fitted last year in November, and after some initial discomfort and inability to sleep on that side it now is absolutely fine, don't even know it's there mostly. Never has it hurt post chemo personally.
I've had my portacath for over 2 years now and find it such a help. It was painful for the first week or so but did settle down quite quickly - do keep mentioning it if it continues to be painful. You have obviously had a lot done on that side, so you are probably right in thinking it is all a bit tender still.
And mine has never really hurt during chemo - occasionally a bit uncomfortable as they access it (but nothing like playing hunt the vein LOL).
I'm not using mine at the moment and have it flushed every 4-5 weeks.
Good luck on Monday.
Dawn, sorry for confusion. I was referring to Alice's comment about it hurting when she had chemo. You're quite right in that the first time my portacath will be used is next Monday.
Not sure what you are saying in this sentence cos I understand from your first post here that you had it fitted 5 days ago in time for your next chemo:
"I'm a bit worried about it hurting after the chemo. Do you think it was because the portocath moved a bit when they did the chemo?"
And yes I believe you are right in thinking it needs 4 weekly flushes. I have my drugs every 3 weeks and it doesnt need any flushing between times..
I am not surprised you feel sore and tender. You have a lot going on in that area.
thanks Dawn and Alice
I rang the oncology day unit and the sister there said it was probably because they cut through muscle and is very sensitive around that area. I had a double mastectomy but had to have the portocath on the same side as I had the axillary clearance so it's probably all still quite tender. Also I still have a considerable seroma on that side which I'm having drained regularly.
I will definitely discuss with the nurses when I have chemo.
I'm a bit worried about it hurting after the chemo. Do you think it was because the portocath moved a bit when they did the chemo?
Also can I ask does it only need flushing every 4 weeks?
Hi I had one fitted in June, just after my first chemo. I did have discomfort in the beginning and found it really difficult to sleep as couldn't lay on mastectomy side. Although it felt really tender it did get better though. You might find it hurts more after each chemo though as I have found it quite painful then. I don't think it is to do with them accessing it. I'd definitely mention to chemo nurse, as they really know about ports, and helped with the skin/stiches after care. Hope it feels better soon. Alice x
I had a portacath fitted a couple of years ago now. Initially I recall discomfort but no more than what I expected. It is very early days for you but I would mention it to the nurse when you have your chemo on Monday.
I had a portacatch inserted 5 days ago ready for my next lot of chemo next Monday. I was totally unprepared for the amount of pain I've had and this started in the recovery room at hospital. Apart from overall soreness and pain I get sharp, shooting and burning pain if I move my arm in a certain way.
Has anyone else experienced any of this and how long did it take to settle down?