PICC Line - Personal Experience

Going through breast cancer treatment Top tips and practical support
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Hi all,

I wanted to post about my PICC line experience on the BCN forum, after coming to the forum previously for ‘PICC posts’ but not finding many related posts. I hope this will be reassuring to somebody facing the same situation / decision!

To start with, I must obviously acknowledge that everyone’s experience is unique, but I was so distraught when my onc nurses told me I’d need a PICC line inserted due to EC reaking havoc on my veins. I’d read the horror stories, saw the diagram of where the line ‘comes out’, and couldn’t help but feel really scared!

However, in just a very short time, that ‘scared’ turned into me becoming incredibly grateful that I had the PICC - which I affectionally called ‘Penelope Piccstop’ :).

  • The PICC line insertion process was pain-free (the most uncomfortable part was the local anaesthetic injection) and over in a jiffy
  • It took no longer than a week to become used to having ‘my friend’ tucked up in my arm
  • The weekly flush wasn’t really burdensome at all; rather, a nice oppotunity to chat to the IV nurses about their weekends
  • Not being prodded with needles any more was such a fantastic thing, and made chemo sessions so much easier as they could just ‘plug in and go’ rather than struggle to get a vein

I’m obviously hoping to never have to do this again (!), but in the event I did, I would opt to have another line inserted from the outset. Yes you have to get it flushed. Yes it does look a little like you’re smuggling a tampon up your arm. And yes it is a little bit of work getting the waterproof sleeve on for a shower. But to me, the benefits far outweighed the cons and it really was “not as bad as you think”!

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Penelope Piccstop is just genius. Great post.

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Thank you so much for this. I have to have a PICC line fitted before my next infusion as they had trouble putting in a cannula at my first one last week. They got it in in the end but it was quite stressful! I’ve been worried about having the PICC line and this has really put my mind at ease.

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Agree with this :100:, great post :grin: pros definitely outweigh cons. Chemo very straightforward as a result of it.

On monthly bloods now and veins in pretty good shape because of picc for chemo.

Flush staff really good- any issues they will help sort :grinning:

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I had a PICC line, without any choice, but because I already have a long-term autoimmune disease which involves needles, all my veins are hard and scarred, so this was the only option for chemotherapy.
I was lucky in the 6 months, I didn’t need it flushed, but was meticulous at keeping it clean and dry, so I could avoid it potentially having to be removed.
It was good for chemotherapy without any hassle and I managed during the summer to keep it covered with 3quarter length tops. The only downside, was as my other condition requires blood tests, the phlebotomy department at the hospital wasn’t trained to use PICC lines for blood tests, so it was painful getting blood (the PICC line has to go on the opposite side of a mastectomy, which just happened to be my better arm)

All in all, I was glad when it was out. That was almost 3 years ago and I still have hole in my arm and skin irritation from being allergic to one of the dressings.

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I’m so glad it has helped put your mind at ease! All the very best for the PICC and treatment moving forward :slight_smile: X

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I’m sorry to hear your experience wasn’t quite as positive! I also coudn’t get bloods from the PICC in hospital or at my GP, though fortunately the health care centre I was referred to did the flush + bloods combined, which made the experience far more streamlined!

I can imagine I may get a small scar as well - I’ll add it to the battle scar list along with the ones from my lumpectomy and SNB! :slight_smile:

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Yes, I agree. The community nurses were great for getting blood from the PICC line for Oncology, but couldn’t do it for Rheumatology.:confused:

Good luck with your treatment also. X

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Thank you for this! I had mine fitted yesterday. I was so scared but my experience was similar to yours. I feel like I didn’t take in any advice given though on how to care for it. I have dried blood under the patch… do I wait for the clean next week or a, I supposed to change the bandaging myself? Any guidance would be welcomed. It’s good to know that within a week it feels easier. I struggled to sleep last night and it is pretty sore. I’m showing it off to friends as my new accessory. Thanks again @camperqueen for your reassuring post. I hope you are now much further on in your healing experience xx

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I had mine fitted yesterday and it was fine. A little sore but I know that will wear off. The cover sleeve they gave me won’t stay put though and I am waiting to collect the waterproof cover for use in the shower. Also, I’m going away for 5 days with some precious friends who I only see once a year and am worried about the dessing change/flush. I’m hoping they can delay it by a few days or that I can get it done local to where I’m staying.

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Interesting to know. I have opted for cannulas because any long term dressing makes me itchy! But I know I can switch to Penelope Piccstop (love it) if at any time it becomes impractical. First cannula was okay - just had first dose yesterday.

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I’ve removed my dressing and there is blood pooled round insertion site, though it’s still inside the gel pad of dressing . I know dried blood after insertion is normal , I assume it is dried, but can’t really tell :see_no_evil_monkey: I guess I monitor it? Nurse coming on Tuesday anyway.

How did yours work out @luka ?

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I’ve just had a picc line inserted so it is very useful to know from others about their experiences. Did people feel they could sleep on the side they have it? And how did people feel with having the bandage on for so long? I may be feeling over sensitive to it so any/advice v welcome.

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I’ve had mine for about 6 weeks, I never sleep on the side it’s on. Don’t mind wearing the bandage all the time. I don’t have the end of my PICC line taped down so do end up wearing my bandage a lot.

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After a few difficulties it has settled down but still getting soreness and aching… into my third week. Thankfully they have switched me to a low allergy dressing as the former was giving me a rash. I feel like I am focusing too hard on how it feels and worrying myself too much - impossible to compare to other arm for normality as it is still painful from lymphatic clearance surgery. The life we live eh?? :see_no_evil_monkey:

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I don’t want to be a gloomy person but do want to share my experience of having a picc which has been less positive than the others shared here unfortunately.

I don’t like needles & was nervous of damage to my veins so opted for a Picc line for my 6 rounds-first 3 of which were EC which is known to be tough on veins. Also had a full node clearance on one side so knew I was down to one arm if my veins struggled.

Picc insertion despite my nervousness was smooth & not painful. Few aches over the next few days but it flushed cleanly & I thought what a good decision this was! Just after my first round of EC I started to notice a new pain in my arm very much like I had been doing lots of weights & was sore. Waited a few days & it didn’t go away & ended up calling the emergency number & going in where I was told I had 2 blood clots wrapped around the line. Started on blood thinners & told pain would now recede.

unfortunately it never really settled & gave me constant pain and lots of trouble sleeping throughout chemo but every time it was flushed was told it was perfect & never any issues with using it for bloods or chemo.

Finally after removal thought great I can have my arm back. 2 weeks after removal (also not painful despite my anxiety) was told I need to stay on blood thinners for the foreseeable. I have an uncomfortable swelling around my elbow crease below where the picc was (about the size of a tennis ball) & this is the really frustrating bit-was told that swelling could be permanent and would limit what I can do-so no weight lifting/repetitive movements/be cautious about press ups etc. I was so keen to get back to yoga to start to feel better after treatment and now seems that I could be forever limited. The only way I can deal with things is exercise to keep my brain calm & really wanted to get my fitness & muscle back in my arms after chemo. Feeling like it’s just another thing this is taking from me-the breast/all my nodes on the other side I gave willingly to save my life. But hearing today more limits to what I can do/what I look like is feeling really hard-I’m only 50 & very active before diagnosis-I know we have to adjust after this but it’s currently feeling like many of the things I love are not going to be possible for me.

Rant over but my goodness I’m trying so hard to be positive & look forward & it’s all just looking a bit like a crap quality of life with 2 swollen lymphadema & dvt at risk arms & the fun of letrozole & ambleclabib (spelling!) etc still to come. All to say sometimes a PICC line can come with complications that have a long-term impact which I don’t think is really talked about enough.

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I think it’s so important to hear different perspectives of our experiences with cancer and the various elements that go along with it as we’re all so different as are our cancers and therefore our “journeys” (sorry, I just can’t seem to find a better word for it!).

I wish you weren’t having such a hard time but appreciate you sharing that you are. All the best to you. x

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@mssteel Thank you lovely. Just wanted to share as indeed we all experience something different through this & some things that are presented as straightforward are not always so. The diagnosis itself is enough to deal with isn’t it then all these other side effects emerge & frankly it’s more than a bit tiresome now! Over it!

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Whataloadof, so sorry you are getting exhausted with all the life changes.

Im having a PICC put in next week. Then I start EC the day after.

Its good to know good and bad sides. If we dont know the bad we have no idea what we need to look out for. But equally it is good to know it can go smoothly.

Some of the ladies on this forum, via multiple posts, have had them in for months/years. My hat off to you all. I have no idea how everyone gets through all this. You are all fabulous. :heart:

But I can empathise with having to stop doing things. I love gardening and digging. Seems that is a no no. So I know I will be frustrated at limited activities.

I read posts on an equestrian FORUM. Some ladies carried on mucking out stables, riding in competitions etc. I guess its a personal choice if we take risks. Some breeze through it all, but for others, those risks are life threatening.

We have to weigh up pros and cons.

But yes, that is exhausting. Chemo is a tough call in itself. But then again collapsed veins are also beyond awful. Rock and hard places. :thinking:

I hated the drain post surgery. I hated not being able to sleep freely. Hated having to carry an awful bottle around all day etc etc. But I got through it amazingly. People have no idea how much we have to endure. But we do. :flexed_biceps:

Ive just got to being able to sleep on my left side, with right arm over my R mastectomy scar. Which was too painful to do.

But once the PICC is in I will be back to having to sleep on my back. :person_facepalming::person_getting_massage:Which I find really hard.

Luckily I had kept my Mums old adjustable bed, after she passed away the other year. It has been a life saver….for helping me get up; helping me sit up slightly, so takes the pressure off my back and neck; helps me relax more.

I am reading as many Posts as energy allows.

Thanks to all you wonderful ladies for sharing all your experiences.

:folded_hands::folded_hands::folded_hands::heart::heart::bouquet::bouquet:

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@poppy261 Thank you for your kind words-wishing you all the very best for starting chemo. If you’re having EC I can’t recommend crumpets enough to keep you eating!

I think I just got lucky (!) with my picc as nobody else in the December cohort had any issues. Like you I was obsessed with getting the drain out post-op-hateful thing!

So…I did find a way to almost side sleep with my picc-arm straight out away from the body & propped up on a pillow-pivot hips & it’s almost there?!

Take care xx