Chemo port - anyone got one or had one?

Hi,

Just to quickly introduce myself, I’m a Grade 3 IDC, have had surgery and due to start 3xFEC, 3xTax and Herceptin next month, but the oncologist took one look at my arm and said “You need a port fitting”.

I’ve googled ports and it pretty much scared me half to death, as I’m incredibly squeamish, so the thought of it sitting there inside me for a year doesn’t appeal, equally though I’ve read some of the threads here where there have been some bad problems with having the chemo through the arm just with a cannula.

So my question is - does anyone on here have a port, if so how much does it stick out, does it hurt having it put in, how do you care for it, and if you’ve had one in the past and it’s been removed, does it leave much of a scar or a dent?

I know I have to have one, and I’m sure it will be fine and I’ll get used to it, and I know the chemo nurses will give me lots of info when I meet them, but I would like to hear from anyone who’s actually had it!

Thank you!

Hi,

I had a portacath fitted just before I started chemo in november last year.

It was fitted under a local anaesthetic under light sedation and although I can remember talking to the surgeon and nurses while it was being done the whole thing is a little hazy due to the sedation which made me feel like I’d been at a really good party :slight_smile: So the actual fitting didn’t hurt at all.

It was sore and bruised for maybe a week afterwards but nothing too bad and no worse than the discomfort I had following core biopsy. It sits under the skin on my upper chest just below the collarbone. There’s not much flesh there so it is visible as a bump under the skin but all my clothes cover it so it doesn’t attract attention. It doesn’t stick out a lot, just enough to raise the skin over the port which is around 1cm in diameter.

As the port is compeletly sealed under the skin it doesn’t require any special care once the wound from insertion has healed. My wound healed within about 10 days and is now just a small scar about an inch long just above the port. On a day to day basis I’m no longer aware of the port at all and don’t think about it. I got used to it very quickly.

I have had no problems with it and having chemo and blood tests via the port was very easy. There was no battling to find a vein, just a quick prick of the needle going in then all systems go.

I finished chemo in March but will be having more in a few months time. In the meantime I have to have the port flushed with saline and heparin every 3-4 weeks to keep it clear ready to be used again.
That only takes a couple of minutes and is not at all traumatic.

Having heard stories of ladies who have had problems with the veins I’m very grateful for my port and wouldn’t hesitate to have one again in the same circumstances. In my understanding it is also far less trouble and less vulnerable to infection than a Hickman or PICC line.

Hope that helps and good luck with yours!

Linda
xx

Hi, I have had a port now for about 3 years and would say yes to everything Linda has said. The only difference was that my hospital only does them under general anaesthetic. Best thing since sliced bread comes to mind :). I have found mine to be completely trouble free and so glad I have one as mine has had to be accessed at least every 3 weeks since I had it put in. I have had 3 hickman lines over the years and would hate to go back to one of them.

Dawn
xx

Had my portacath fitted 2 weeks ago under GA and 2nd chemo was a lot easier, first round was 7 attempts for access and it burnt the vein in the process. I put emla on an hour before and can’t feel a thing. The port is completely hidden and the scar already healed up. No problems at all! Hope it goes well for youxxtina

I had one put in last Monday and my first chemo Tuesday. I’ve not got used to it yet and there is still bruising, but it is great for the chemo. Take care Maria

Ah that’s great, thank you everybody! Very reassuring! I am due to go on a bit of a holiday first week in June (few days in Brighton to see Stereophonics in concert), so I’m going to ask if I can have the port fitted after that, but as I haven’t got a date for my echocardiogram yet or for an initial meeting with the chemo nurses, I’m hoping that won’t be a problem.

I didn’t ask if it was done under local or general anaesthetic, I’m hoping it’s local as I had a few problems with general after my surgery! I like the idea of being at a very good party…

Thanks all! Good luck with all your treatments, too.

I had a few teething problem with mine - it got a kink in it, but works fine now. You get used to it quite quickly - I’ll admit I didn’t like the feel of it at first. Also, make sure your surgeon knows what chemo you are on - I was taking Avastin which prevents clotting - my surgeon hadn’t realised, and had a bit of a panic when he couldn’t work out why I was still bleeding hours after surgery. I am very glad I had it fitted - I will be having IV drugs for at least a year, and my veins just weren’t up to it. Also, makes the whole process a little quicker - and you have both arms free during chemo.

Forgot to mention my surgeon refused to do it under a local - he said when you are fitting things to veins you don’t want to take any risk that the patient suddenly moves. Put that way, I agreed with him!

I had a portacath last year for the last 4 chemo as I’d developed blood clots following FEC in my arm and couldn’t tolerate a PICC line.

It was amazing and believe me you don’t wnat the chemo nurses rooting around for a vein in your arm - that is painful. Also I used to go along for chemo uncertain if they would even be able to find a vein and worried whether I’d have my treatment.

I had mine inserted under a general anaesthetic. Surgeon said that I’d been through enough already and as it might have been difficult to insert (it had to be fitted in a seroma!) he thought it was best and I agreed. I had it removed no problem under a local.

Mine was very sore to start with but I think that was because of the seroma etc. and it did settle down. They were able to use it immediately and I found the insertion of the line almost painless. I developed an infection and had blood samples taken from it and antibiotics through it.

You can see it but it’s not huge and for the benefits it brings I wouldn’t hesitate in recommending it. You’re very lucky your Oncologist is providing this straight away as I gather they are very expensive and they often don’t.

Elinda x

I should add that the infection was not from the portacath but due to neutropenic sepsis. There was no problem with the portacath.
Elinda x

Hi all,

Just found this thread when I was about to start one asking for opinions on PICC lines. I’ve been asked if I want one before 2nd FEC at start of June, but I have to decide 10 days ahead, so soon. My vein was trouble free throughout 1st FEC last week, but I don’t like the idea of snags and therefore delays on future blood tests/treatments. With only one arm to play with (I actually do have 2 arms but you know what I mean!) the nurse seemed to think that veins could be tricky in the future. But nor do I want an unnecessary procedure…

From the largely positive posts on the portcath I get the impression that PICC lines are less well thought of. Anyone else with more experience of these please? They gave me a leaflet, but they have to make the possible down-side so clear, it’s hard to get a feel for the up-side! No-one’s mentioned a portcath to me yet at the hospital.

So many decisions!!

Sue x

I am glad I had a choice, especially now the summer is here I can wear tshirts etc as the portacath is very discreet. Also no weekly trips to have it flushed. The macmillan website has a good section on all the central line options. Xxtina

I was only given the opion of the PICC line which I took as my vein useless. It was fitted on the morning of my first chemo!
I find it a bit if a tag and yes as summer approaches t-shirts my be a problem. I cover with tubafast when wearing t-shirts.(on my upper arm) It only takes minutes for nurses to flush and they come to house and seem very flexible if I have arrangements.
It saves alot of stress for me when it comes to bloods and chemo!
If offered now I think central line my have been my choice but I still dont fancy another general!
Yet again for’s and against’s that we have to weigh up!

I asked for a portacath as had poor veins, even before chemo started.

Mine was fitted under local anesthetic, without a sedative. They said I could have one at anytime during the procedure if I felt I needed it, but I never did.

It didn’t feel too bad - I’ve had much worse trips to the dentist! But there were just a couple of ‘ooooo’ moments, you can’t feel pain but you can still feel movement, so it was a bit weird. But I had a nurse there who’s job was to hold my hand.

Afterwards I had a £1 sized lump near my collar bone. It didn’t cause any pain, but sometimes I could feel a ‘pull’ in that area which could be a little annoying. But I was able to shower and swim as normal and just forget it was there.

Numbing cream was put on about an hour before use, so I didn’t feel any pain when the needle was put in. One go is all it ever needed.

I had mine removed last week, and I’m left with a scar that is about an inch long, which is healing nicely and should start to disappear soon.

It was well worth it, and saved my arms no end of stabbing. So I would definitely recommend one.

I had mine put in under local anaesthetic in Dec 09. It has been the best decision I have made. I was offered sedative during op, but did not need it. It was sore for about a week afterwards, but not that bad, only used paracetamol. Having chemo now is so much easier and less painful.

Hi Scoobs,
just read your post. A lot of hospitals don’t fit portacaths as they are more expensive than picc lines. I was given the choice and the ladies at the chemo day unit were happy to show me both in situ. I chose the portacath, less restrictive on a day to day basis. Had it put in dec 09 and i am competely used to it now. Inbetween chemos i forget it is there, no flushing, no special looking after. I put on local anaestheic cream 1 hour before appt and don’t feel a thing. Before this the nurses spent up to 4 hours poking around for a vein. Would recommend it.