Sure enough at my last herceptin before christmas I was told once again they could not get vein. My hand was a pin cushion. I was told I need a PICC line, travel abroad would not be possible and a nurse would need to flush out each week. Great I thought. Just when I was thinking we could get away for a few weeks after a most xxxxxxxxxxxx year. But no, apparently such an idea is out of the question. I was told no airline would let me travel and no one would insure me.
Then a Portacath was mentioned by chemo nurses. I was told this was in for life. You could travel on plane, do everything as normal and it needed flushing only once a month. Is this right? It doesnt agree with info on cancer backup site which says in can be removed. I am so confused. I feel terribly bullied into something which I am not happy about and not in full possession of facts about.
Eventually an “expert” arrived who got a vein. Apparently they can also look at your hand with ultrasound as well but they didnt need to this time. They seem so impatient.
I have just about had it with it all. Its nothing but one thing after another.
Hi Starfish, really sorry to hear you are feeling pressured into anything, once you get peoples feedbacks from here hopefully you can make an informed decision that is what YOU want, not what someone else thinks.
I refused a line in 2007 and struggled through being stabbed some 5 - 8 times for each chemo towards the end. But since being rediagnosed, I had a portocath put in as really had run out of veins. It’s great, and makes the whole thing so much less stressy. I just pop on some numby stuff (amontop to give it it’s medical name) an hour before I am due for blood tests or chemo and I don’t feel a thing.
As I am in treatment currently it is run through every week, but was told inbetween it can be done once a month. It’s totally below the skin, so you can just get on with your life without worrying about infection or lines hanging out or anything. Personally I am very glad I chose it. As for how long it can be left in, there is one woman at my clinic that has had heres about 6 years or so now.
I did have a general to have it inserted and it was a bit sore and hard to sleep on for the first few weeks but now I don’t really notice it. There are two incisions, once on the chest above my remaining boob, where the portocath sits, the other up on my neck where it joins my collarbone where the pipe is threaded into the jugular. It can be removed if you have no futher treatment planned.
The information you were given is partly right. A port can be in for ‘life’ - well several years anyway. But it can also be removed. I know 2 people who have had theirs removed when treatment finished. I have had mine for 2 years now as I am on permanent treatment and have no problems with it. Mine too was done under a general anaesthetic, but a lot of hospitals do them with local. I only had one incision about an inch long and a small hole about an inch above that to insert the tube into a vein. It is set about 2" below my collarbone and bulges a little bit. Apart from being a bit sore for a couple of weeks I am really pleased I had it done. There are no problems travelling abroad with one either.
I was also told it can come out at the top of the unaffected arm. Is this true please? Also Dawn there is obviously no problem with airlines and travelling then?
Hi, I can endorse everything said about the wonderful portacath. One of the worst things about chemo was whether they were going to get the stuff in in the first place, knowing my veins were dodgy caused me endless anxiety every time. Then there was the succession of people trying to get a blood sample out of my veins, no fun at all.
I had the first port put in under a general anaesthetic (being the eternal coward), but the second under local and hardly noticed the difference.
It hurt for about the first 3 days then fine. Accessing it is just a pin prick like an injection, I do not need any pain reliever. Otherwise I do not know I have it. Just feel so much more confident at treatment time.
Only disadvantage is that they cannot use it for CT scans.
Just a thought but have they tried elsewhere on your arm? They couldn’t get a vein in my hand for many Herceptins but used one inside my elbow for most of the treatments. I had a PICC then a groshong line for chemo and had problems with both so they did agree to me having a portocath if necessary but I managed without.
Good luck
Anne
i have been all over europe with a port now and to the USA, I do get a beep if they pass a metal detector over i, but no one has ever asked, I think they assume its my bra not asmall lump of metal. They really are no trouble, I had one for my primary and it came out after treatment finished and have one now for secondaries,
I thought I had a Portacath, but now I’m not sure, having read the comments here!
Whatever it is, it’s been in for 14 months (only used for the last 7) and it’s never had a washout (or any other kind of maintenance), except after the chemo. Has anyone else got one like this? I’ve flown with it and it set off one system, but not the others.
I love it to bits - makes life so much easier. I can swim, sleep, shower, etc in total comfort. And mostly no nurses digging around for veins, of course - speeds things up for you, the staff and all the other patients waiting their turn.
Its sounds like a Portacath but I am no expert. Just been to see a nurse today about having one fitted. My veins have had it. If you have to have a line then a Portacath seems the best to go for. Only downer was when she said best to keep it in as people having Herceptin likely to need further treatment in the future! That cheered me up. As I have said before, never get any good news at the hospital. They are always so pessimistic. Visited GP the other day who kept saying “Happy New Year”. I said I had my doubts based on the continuing pessimism of everyone at hospital!!!
I’ve had a portacath since my first chemo, it was fitted under a local anaesthetic and is completely under the skin with barely a scar now. I was told it would stay in until I’ve finished treatment, which should be when Herceptin finishes but now I’m not so sure - I don’t like your hospital much Starfish!
I don’t have any pain relief when they do Herceptin, after all the cleaning and disinfecting they tell me to take a deep breath and they then plunge it in, a bit like a rubber stopper I think. It doesn’t hurt and then after they just flush it through.
Mine is fitted just above my good breast, in the chest and it goes into the main vein.
Don’t worry about it, you will find it much easier and life can go on as usual.
Well this is all a mystery to me. Went for Herceptin yesterday. They found a vein no problem. No mention was made of Portacath or anything. I brought it up. They said well theres a problem as you want to go abroad. When discussed last week they seemed to be trying to put me off Portacath. I wonder if its too expensive to fitand when they originally said about a line thought I would settle for Hickman or PICC. All very strange.
I agree with Peacock - your hospital sounds a right pain.
As I mentioned earlier, I’ve flown and gone abroad with a Portacath fitted, with no problems, just as you were told was possible.
I’m pretty sure they are newer and more expensive than Hickman, Picc or Grouschon lines as they are also more sophisticated. But why did your hospital mention a Portacath if, as now seems the case, they have no intention of ever fitting you with one? What on earth are they playing at?
Although I had problems with my portacath (the wound never properly healed and eventually I had to have it removed) I would go for one every time and wouldn’t entertain anything else. I was able to swim etc without any problems. And I went abroad - France, Spain and somewhere else that I have forgotten. Brain is mush today - sorry. Insist on a portacath - there is no substitute!
Hi Starfish,
I suffered 13 weeks of my nurse digging for veins in my poor arms, before she sent me for a port. It has been the best thing I ever did in that place!
I had it inserted under local and a bit of sedation, and I would say that it was a bit of a struggle for the doctor. He certainly grunted a lot and there seemed to be a lot of pushing and pulling!
Then the next 3 days felt like there was fire in my chest. But with the help of some strong painkillers, it passed and now I do not know that it is even there.
Highly recommended.
Penny