PICC line/Port for chemo - experiences please

[FridaLady82]

My mum had stage 1C serous ovarian cancer 13 years ago and had surgery and platinum chemo. Unfortunately a recent CT is highly suspicious that it may have returned. We’re waiting for a biopsy and chest CT.

Mum’s biggest fear about chemo again is that last time her veins became incredibly painful – even the fluids going in really hurt – and she says she couldn’t go through that again.

Has anyone had a PICC line or Portacath for chemo instead? Did it stop the pain from the drugs/fluids going through your arm veins? Can you ask for one from the start?

Just trying to reassure Mum that if she does need chemo, it doesn’t necessarily have to be the same experience as 13 years ago.
Thank you

I had a port, and most people I know who had chemo had either a port or a picc line. I don't remember any pain from the chemo drugs going in, and I had 16 rounds of chemo!

Oh ok this is very useful to know. Worried about infections. Mum’s last cancer was 13 years ago, was your’s more recent? We will speak to the nurses because mum is petrified at the pain of this. I don’t know if she communicated this before, because she only told me now and so we will need to make the nurses aware.

My daughter has just been diagnosed with cancer, we are currently looking at whether surgery is possible but if she does need chemo we’ve been told she’ll definitely have a picc line. It seemed very much like standard practice at the hospital she is at x

My mum had "baby veins" and the picc/port wouldn't stay in. They did it all by needle and ultrasound and she was black and blue. I dont know anyone else this has happened to though. X

I only finished chemo at the beginning of last year, so pretty recent. I was always told I have very small veins 🤷🏻

Hi, I had breast cancer four years ago. I was given a port which worked really well. Needed a little Emla cream to numb the area on occasion but it worked really well.
I have a small scar there now which reminds me of my journey.

I had a picc line for breast cancer 8 years ago and it was a great option for me, it’s not just the chemo it helps with, but taking your bloods etc as well. It’s uncomfortable when they place it but not awful and then you’re good to go! My lovely mum made me all sorts of snazzy covers for it!

My husband was diagnosed in 2019 with chemo starting in 2020. He's always had veins that like to hide so he had a picc line. He said theres no pain with one and was much better than multiple failed attempts at finding veins. We never had any problems with it.

This is so helpful to hear, I’m very grateful to you all for sharing this, we will have to see the results of the biopsies etc to know what we are handling.

Thanks so much for sharing part of your journeys. Mum is terrified to go through it all again, just waiting for the results.

I had a picc line for chemo. I found it a bit uncomfortable - I could feel it inside me by my heart when I exercised and when they put cold meds through it - but not painful.

I did find it a bit of a faff. It had to be flushed and the dressing changed weekly by the district nurses and organising appointments was a bit challenging. Plus it had to be covered for showers and I couldn’t swim etc. Theoretically bloods could be taken from it, but practically there was rarely someone trained at the blood clinic so these were still mostly taken from my arm.

On balance, probably better than having it through my veins each time….

Hey! Im a wimp. I cry at the dentist. Picc line is painless and 100x easier than canulating hands. They just connect you up. Only downside is my hospital still sends you to pathology for bloods. I cannot recommend a picc enough. Best wishes to you and your mum

Thank you for the kind words and detailed information, I’m truly grateful. We shall see now what happens waiting for biopsy dates. I do believe as it’s been 13 years she could have platinum chemo again, she was so tearful and is feeling very worried. As we all are.

I guess we did have to expect it to return.

You’re all very kind for sharing your experiences.

Breast cancer diagnosis here. I had 6 cycles of neo chemo and had a PICC line, it was brilliant and I highly recommend.

Insertion takes place in a theatre setting, not big operating theatre more a minor room, local anaesthetic is giving to insertion site, PICC line is inserted under sterile conditions. At my NHS hospital, you have to attend once a week for your PICC line dressing to be changed.

The only inconvenience I experienced is you can’t put that arm under water so taking a bath means keeping that arm out of the water. You’re given a cover like a shower cap to cover the dressing in the shower.

I found over time my skin under the dressing became irritated and itchy and resulted in little blisters so I needed to have my PICC removed, but I managed to have 4 treatments through my PICC, which was worth it for me as I hate being cannulated.

I hope your mum receives positive news x

I’m so sorry you all are going through this, and very sorry for your mum. First of all, fingers crossed that it won’t be a recurrence and all is fine.
I was fitted with a port in December.
i decided on a port as a picc line seemed to be more awkward (have to cover it when showering, not being able to go for a swim, having to be flushed every week)
When I had the port fitted I had local anaesthetic and I still found the procedure a bit painful (they then topped me up with sedation). It did take me a fair few weeks to get used to the port. Not necessarily painful, but it just felt a bit awkward.

I’ll be honest, I also found it painful when the chemo nurses accessed the port, but that was literally for 10 seconds each time and I certainly didn’t feel any pain while the chemo was being administered.
I had 16 rounds of chemo and immunotherapy alongside it. I finished with that in April but still have my port as I’m due to have standalone immunotherapy later this year.
I’m glad i only have to have to go to the hospital every six weeks to have the port flushed rather than having a picc line which needs flushing weekly.

So depending on what type of chemo your mum might have, I’d go for. Picc line if it was only 4 rounds of chemo, but for anything more I would go for a port. I certainly never regretted having a port rather than a Picc line

On a different matter, I fully understand the worry when a scan shows something dodgy. I had a PET scan in July which showed nodules in my lungs, had a biopsy 10 days ago and am waiting for results.
You certainly have to dig deep to not fall into a pit of despair.
Saying that, i hope my nodules are just some inflammation, and I hope the same is true for your mum.
You sound like a lovely daughter and a great support to your mum.
all the best

@FridaLady82 - I used to have a PICC line – it can work well – I found it rather fiddley during daily life – it went a bit wrong for me – I’m not too sure what it was but they couldn’t get the line past the valve (I think).

So they fitted me with a ‘Port’ – I’ve still got it - best thing since sliced bread - particularly when at a 'bloods appointment' or receiving Chemotherapy – it’s a lot less bother on a day-to-day basis.

… Did it stop the pain from the drugs/fluids going through your arm veins?... I didn’t feel any pain from the drugs going in with a PICC line or a Port.

Notes: 1) It needs to be flushed every 6 weeks if it's not used for a while.
2) When booking a 'bloods appointment' you need to specify that you have a port (or a PICC line) because not every nurse or phlebotomist is trained for them. I pop along to my local hospital.

In my opinion a Port is the best option - go for it.

Thank you so much for sharing your experiences - living 150 miles from mum is hard! I’ll be doing a few trips on the motorway I have a child with special needs so it’s going to be challenging times!

Your experiences and opinions are very valuable and reassuring. I know we are not there yet but I may tell mum about these so she’s less worried. She loves to swim so we shall see. Thank you again.

Hi, I had platinum chemotherapy (amongst others) too. I had a PICC line. Unfortunately with the first one I developed a blood clot so they had to remove it. I then had another one put in my other arm and then it was fine. I don’t remember any pain, unlike with a cannula. I wasn’t offered a port.

The docs will tell your mum what to look out for re. complications like clots. My hand swelled up.

You can buy arm covers to use when having a shower.

All the best to you both.

I had a PICC, it was so much better than them trying to get blood out of a stone. My arms were black and blue with bruises until I was suitable for a PICC.
It did get infected at one point and they had to do a new one on the other arm.
I think at one stage I was so tired I could sometimes sleep through them taking bloods at 6am every morning before changeover.
The day my oncologist told me my PICC could come out was the best day ever.

I'm another one who had a picc line, small veins and always a nightmare when having blood taken or cannulas inserted.
Genuinely made the whole experience of chemo so much easier, and pain free. My first chemo took nearly an hour to eventually get a line in and my arm felt like it was burning, I could feel the chemo going in-picc line was amazing, quick and easy to get started, and couldn't feel anything.
Went every week to get it cleaned and blood taken, again pain free. I also was a bit reactive to the dressing, but the nurses were amazing and used to out the smallest one possible on me and used some barrier ointment.
I did find getting used to it initially a bit annoying and I had to sleep with my arm on a pillow as I couldn't get comfortable.
But the benefits far outweighed any discomfort I had!

I have a picc line and narrow veins. It has been absolutely fine. Sometimes gets a little prickly (if the clasp thingy moves) but generally fine. I forget that it is there, I have a cover for when I go out.
The biggest issue has been sweating in this hot weather and needing to keep adding plasters so it sticks!

Thank you for sharing your journies x

I’ve never had cancer but have other health problems. My veins are appalling so I have a portacath after years of cannulas and picc lines etc failing, and it works really well. Easy to look after and never had any issues with drugs hitting. Super easy to put in too. Hope your mum is ok.

I’ve had a port for about two years now. It was done under GA. I’m on palliative chemo so get an infusion every two weeks. I use emla cream prior to treatment and I don’t feel a thing gratefully. Best decision ever. Wishing your mom the best.

Piccs and Ports are very common these days, I’m a district nurse and we flush them all the time and patients can go to the hospital to have chemo started then come home with a pump and we disconnect it and flush the line. I’ve known very few people to have any issues with them x

I’m a ward nurse, and I’m CVAD trained. I’ve looked after loads of patients over the years with PICCs and Ports. I love them - easy to use, admin meds and take bloods from. My patients love the ports as they’re so convenient and hassle free. See if she can get one. Well worth it. My veins are great and I’ve luckily never needed IV meds, but I wouldn’t hesitate to get a port to save my peripheral veins. X