Hi
Probably loads of thread but take me forever to find.
Have only had 2 of 6 cycles of Epirubicin but vein already aching and veins on other hand are considerably smaller and not good to use. Talking to BCN and asked if I wanted to consider a port. I said is there any mileage for 4 more cycles, but she indicated I might need more chemo at a later stage.
This hadnt been mentioned (further chemo) before now - so was a bit of a shock/surprise. Suppose I’m being a bit naive but thought I would have 6 cycles and be home and dry.
I had a permanent chest drain fitted recently which was horrendously painful and still is super tender - still healing.
I have googled pics and descriptions of how portacaths are fitted and now am worried at the prospect.
Anyone can share their experience of this and how they coped, pain relief wise. I would prefer a GA but I dont think this this would be given as routine.
Any words of advice greatly received!
Tks
Hel
Bringing to the top for Helhel
Here’s a few links to older posts re portacath:
breastcancercare.org.uk/community/forums/undergoing-treatment-chemotherapy/port-cath
breastcancercare.org.uk/community/forums/undergoing-treatment-breast-cancer/concerns-over-portacath
breastcancercare.org.uk/community/forums/experiences-portacath
Jo, Facilitator
Hi Hel
I had a port inserted after my first chemo as like you I had sore swollen veins, in fact they are still sore and swollen 5 months later! I had mine fitted under local and it was fine, just felt a bit of tugging and I took some paracetamol afterwards until it settled. It was bruised the whole time it was in but didn’t really bother me too much and it was definitely worth it as it made the chemo so much easier. Some people don’t feel it at all but I am very sensitive to bruising and bruise easily.
It takes about a week to heal then you can bath, shower, swim etc with no worries which is another big plus. My hospital insert them on the inside of your upper arm so any scarring doesn’t show. Another friend had hers in her chest and does now have a small scar but barely noticeable.
i had a total of 6 FEC so the port was inserted for just 5 but absolutely worth it as my veins would have been shot without it. There was a girl in my chemo ward who hadn’t been offered it and she was crying in pain as they tried to find somewhere to put the cannula in for her last two chemos.
i hope that helps and good luck
Jayne x
I had my port fitted after 3 cycles of FEC as my veins were rubbish to begin with so they were absolutely shot after even the first 2 cycles. (4 attempts for a cannula on cycle 3). I had 18 cycles of Herceptin after this so definitely felt it was worth it. I thought it was the best thing ever. No problem at all going in, as loads of local used. Must admit it was very painful the next day after all the pushing etc to fit it. But brufen and paracetamol helped with that. Once it was healed and settled down, it was brilliant.
Get it fitted! They can take blood samples from it as well as give you your treatment. I’ve had mine removed now, which they did through the original scar.
good luck
Mandy xx
Hi Hel I had a port and certainly think it was worth it. Bit painful on first day of going in but probably nothing compared to trying to find veins all the time. I had 3 FEC and 10 Taxol (should have had 12 but too poorly at the time) and not sure my veins would have coped with all this. They give you cream to numb the area just before your infusions although mine didn;t always want to play. So the nurses and me had great fun around the room trying to get the port to allow my blood through for testing before the infusions. Certainly worth it. I do have a small scar where it was - had it taken out soon after chemo finished. Go for it as it will save your veins. I still have regular blood tests via my veins now and each time iti s more painful as they don’t like it!!! Plus as I had axillary clearance they didnt want to use that side and therefore my right arm would not have coped week after week.
Hi Hel, I’m a secondaries girl so my port is fitted for longterm use, however, if your veins are giving out I still think it would be worth it shotr term. I had mine done with local but I know some hospitals do it under general, so you could ask. Even under local it was ok, you feel a bit of pushing and are a bit bruised and tender for a few days but otherwise all is straightforward - they used my port for treatment within a week of it being fitted. I guess it comes down to how distressing you find hunt the vein… I’m glad I had mine fitted.
Good luck xx
Hi Hel,
I have had my port now for about 6 years and it has been used constantly over that time as I am on regular herceptin and zometa for bone mets. Some hospitals do it with GA but I think the majority with sedation/local. Having had several procedures with the latter for hickman lines (another form of vein access) I would have much preferred sedation to GA. My port is about an inch below my collarbone midway on left side and has never misbehaved :). I don’t feel it when mine is accessed, or when the needle is taken out afterwards so don’t even need numbing cream on it which I always had on my veins before the port was fitted. The scar I have is very neat and small but the port does protrude a little bit although that doesn’t really bother me. If you have not had mastectomy then I think the surgeon can site the port lower but be warned they can wobble a bit (o.k. who’s tittering LOL), but I guess it is the surgeon’s preference. I am probably the other end of a wide range of experience having no problems at all so obviously I would say go for it - best decision I made too.
Dawn
xx
Thank you all for your replies.
All a great help. Had a pre cycle chat with BCN today and we agree another vein to use this week but will talk more about having something fitted. The pain in the current vein has lasted nearly 3 weeks, so I expect the other vein will suffer.
At least none of you have told me horror stories - the pain is my main concern, as I am a fully paid up wimp!
Thanks again - let you know if it goes ahead.
Hel
xxx
Sorry to be a latecomer here, but I am another advocate of the portacath - life is soooo much easier when you don’t have to play the ‘hunt the vein’ game every time you need to give a blood sample or have chemo or herceptin. You will be so heavily sedated that you won’t know when it goes in, or when it comes out too - I thought that I had chatted to my doctor the whole time of the procedure!
I must admit that reading about the procedure before I went ahead with it was the worst bit! Once it is in ask your chemo unit for some emla cream to use about an hour before your port is accessed and you won’t even feel anything when they access your port.
I only wish that I had had mine from the word go as now my port has come out since I have finished chemo and herceptin it’s back to playing ‘hunt the vein’ for even a routine blood test as my veins have collapsed.
Good luck and go for it!
Hiya
I have had my portacath fitted for four months, I had a GA and was discharged at 8.30 in the evening within three days the port was accessed for bloods, I didn’t feel a thing! Chemo is faster & easier to administer. I have my last 6th FEC next week, then a 1 year of herceptin. Plus points you do not feel thing when the port is accessed, no flushing the port. negative points I have two scars but this will fade ito mine, not all staff are trained to use them. The port can be seen on my chest.
I love mine now.
i hope this helps
mummybear x x
Thank you Mummy Bear and Mazzalou for your input too. Will def be speaking to onco next week about this. In the mean time, has anyone got any advise how to treat/improve a painful vein for my first 2 cycles?
If I extend my arm it feels like my vein is stretching inside and isn’t long enough! It is pretty painful.
it was suggested to use something like ibulieve gel but I can’t see how this can work on a vein deep under skin. Only the first couple of layers of skin can be affected by anything rubbed on the skin…thinking of moisturiser etc. I don’t get it!!
Any suggestions? Do I need some sort of physio help??
tks as always to everyone who reads but especially to those who answer.
h
Hello Hel,
i’m sorry I can’t help with your current painful vein problem but I am sure someone at the hospital will be able to help. I agree with Mazzalou and mummybear, dawn and Julie: portocaths are a good thing. My veins were shot 18 years ago with chemo: I had the portocath fitted under local anaesthetic (mildly inconvenient but not really painful) just before Xmas when I had my secondary diagnosis. It was used for the first time today.
I hadn’t realised that it needs flushing once a month. Or that you can’t assume the nurse administering the drip knows you’ve got one or is comfortable using one. Last session they had run out of needles for it so they had to use a vein. I am happy knowing it is there now with one less thing to worry about: the hunt for a friendly vein.
All the very best
Susan
Thank you Susan for your advise too. Only yesterday, I had a chat with one of the BCN’s at the hospital. Its possible that I may have to change chemo regime, and if that happens, I will have to have portacath due to drug used. Its a vein wrecker apparantly.
I have set the wheels in motion about this and pleased to hear that my hospital will do it under a very quick GA. Pleased to hear this as I am such a woos about procedures. I think they opt to do it this way to avoid patient moving while its being carried out.
I also spoke to a CNS who said that for the area I live in, the district nurses are not so familiar with them and not trained up to flush - but I can always go back to the hosp to have this done.
So other than the reason to have this done (damned cancer) then I am happy to go ahead.
H
Notwithstanding the reason for having these …
I had one fitted nearly a year ago and it has been very convenient indeed. I forget it is there as it is so well hidden. I expected it to be sticking out as I am thin but this particular BS did a good job - not my original incompetent one!
The only potential problem for me is that ONLY 3 people at the hospital are allowed to use it for blood tests, bone drugs, scan fluid etc. If I were taken into A&E for any reason then they’d have to start stabbing my foot for a vein.
CM