Terrified of PICC line - can’t they just use my arms?

Hi there, I really feel for what you’re going through. I’m in a similar situation with a tumour roughly the same size although it’s been waiting since June to start treatment so grew another cm in that time… I was hit with the masectomy option out of the blue in a consultation after being told since June Neo chemo first for lumpectomy. I had a bit of a meltdown tbh and went to the dr to basically blub to her about it, I also phoned the nurse that would be treating me with the chemo so it all went in my notes. Anyway the upshot now is I’m on my 2nd Neo adjuvant chemo and hoping this achieve good shrinkage for a lumpectomy . The way I saw it then I needed chemo after anyway and also even with masectomy it can come back so why not just try. I got my way and even after session 1 it seems to have gone really squashy! Are they still going to do a masectomy for you with Neo chemo? Or are you speaking about the picc line after surgery? Maybe if you get a good shrinkage they will change your plan? It’s dependant on a lot of different things I think.

I think it also may depend on which hospital you’re with as well as to whether they do breast conserving surgery absolutely where possible as one of the nurses said to me that my hospital are really good for doing that in the first instance.

also regarding chemo, mine is in the veins every time with a cannula as this hospital thinks it’s better for less infection risk, I did ask them when I was there on Tuesday. I think different hospitals do it differently but at least with a picc you won’t have to be stabbed multiple times, my hand veins are already no use as they tried too many times on my right hand they have not used it at all, next time they need to use my arm and it’s only going to be session 3 of 8…

1. it is worth asking for what you want but it may be the hospital policy to use a line so you might not get anywhere but I always think if you don’t ask you don’t get… say you’re squeamish the thought of flushing it.

x

I’m so sorry to hear about your experience. I too am a single mum with young children and I get how you don’t want to breakdown around them. My sister has been good to me by taking them overnight and some weekends just to give me the space for a good cry. I wonder if you have someone who can help in giving you that space every now and again?

It’s not an easy journey, so many uncertainties and so many different emotions! Let’s keep sharing, I’m finding it helpful.

I’m going in today for a second ultrasound and biopsy and so upset that I’m going through the same emotional trauma I went through a few weeks ago with the possibility that the treatment plan could change.

let’s keep on taking one day at a time…

Thank you so much for your message. It’s so tough isn’t it, even when you are a strong person. I’ll ask about options re PICC or not - I think it was how it was just dropped into an appointment bookers call who said she had no medical knowledge, rather than a face-to-face with explanation.

Lumpectomy has never been mentioned as an option - maybe because mine is near my nipple. 

I’m also so angry I was never offered ultrasound as mammogram missed this tumour - it’s not ‘policy’ in the UK, so we get late diagnosis and invasive outcomes. I’m pushing for screening policy change, so please follow my Insta ‘densebreastdiva’ 

thanks again for replying and I feel for you and hope your treatment is as best it can be x

Thank you Ruva for your reply, such a good idea re the children and giving you space - it’s hard being brave all the time, I’ve being trying to keep a sense of normality for my daughter until treatment blows that out of the water, but it’s not easy - every call or appointment shakes me then I have to re-level myself.

I hope your second ultra/biopsy go okay. Thinking of you too - it’s good to have this community isn’t it. I’ve also set up an Insta ‘densebreastdiva’ to spread the word for better screening to catch this earlier with less invasive outcomes - so please follow. X

I would ask about lumpectomy being an option if it shrinks enough but maybe you’re right and the position may make it difficult. I ask so much and question absolutely everything, sometimes different doctors give different answers too. Yes it’s horrible sometimes when things just get thrown at you, the goalposts change constantly. I met my surgeon after my meltdown at the dr so he came with 3 options and wrote me a lovely really detailed letter of what the options are.

a friend of mine had breast cancer when she was around my age and she asked why thermography was not used in the uk as mammograms arent good at picking anything up and the consultant said she wasn’t sure but she agreed and it was probably to do with cost!! So anyway yes the same as you basically wondering why use something that isn’t effective.

I hope you get somewhere with asking to be cannulated each time if that’s what you would prefer, is your treatment starting very soon?

I’ve followed your insta, what a brilliant idea!

x

Hi there. I didn't like the idea of picc line either. Plus I have a squeamish husband. I was offered a portacath instead. It is a button like thing that sits under the skin that they use to get chemo into you. They put it in under sedation so it is another day in hospital but once in it stays there as long as it is needed. You don't really notice it. It needs to be flushed every 4 to 6 weeks but with treatment and bloods I have not have not had to do many extra trips for flushes. It was the best decision and weirdly I will miss it when it finally has to be removed. My 14 year old calls it my USB port. I am not sure if all chemo units use them but it is worth asking if it is an option. 

Thanks so much!

Please share ‘densebreastdiva’ to your friends and colleagues - I want to get the message out for early diagnosis and policy change - so the more followers the easier that will be!

My friend’s sister is a chemo nurse, she just messaged me this very valuable info (I might ask for a port)…

Valuable info from Roy’s sister (my gardener) …. She’s a chemo nurse and she gave me her number. Re the PICC line….

Morning Debbie, first of all sorry to hear that you’re having to go through this roy did explain. regarding the picc line and condition of your veins is really irrelevant it’s not really to do with that a lot of the drugs we give because of the doses have to be given via central access, on top of that a lot of the drugs they call vesicants so they can be really inflammatory to the veins they can make your veins kind of almost break down and then drugs leak into your tissues and course quite nasty side-effects. Some people they have to be referred to plastics if that happens. so that is why generally we put a picc line and also the more that you have the treatment the more fragile your veins will become and getting bloods becomes quite difficult. I can totally understand why you may not want to have a picc, they are flushed 2 weekly normally. There are other options you could discuss with them like having a port that just sits in your chest and it’s under the skin and you wouldn’t see it’s like a little round down disk that we access it each time. other option would be a Hickman line that also is in the chest area, but it does then have lines coming out of it a bit like a picc line so a Hidden device is only a port But you need to discuss those options. the info session that will be a nurse ringing you and going through all your treatment drugs you’re having the side-effects when you need blood tests. The supported medications that you may need just everything explaining it all to you really, so the nurse will do that the lady that’s giving you your appointment would just be the receptionist that’s just booking to say when you’re going to start. Obviously if you need any further advice then I’m more than happy for you to message me And let me know what discussions happen around the picc line and if they explore other options with you. if you’re really against then we obviously would put a cannula in when you come in, but just to be aware like I say a lot of the drugs are vesicant and can cause long-term damage to skin and getting bloods and stuff might be quite difficult, but it’s your choice if you’d rather go down that route and just see how it goes (etc…)

Hi Dkbythesea, sorry to hear of your diagnosis. When I started on my journey I thought about a picc line to save having to have blood tests and then a separate cannula for chemo. I only have one arm they can use as I had an axillary clearance. This would mean having the one arm jabbed minimum of 16times with 8 chemos and 8 blood tests. Then due to having a reaction to Phesgo I have to have another injection so another 18 jabs into the arm too. My poor arm would have been a pin cushion. Picc line was looking like a good option but then my oncologist suggested an arm port. It works wonders did all my chemo, bloods and pre meds which I still have. It has been great. It’s hidden under the skin, takes about 45mins to do and is painless. It’s a bit sore after for a couple days but paracetamol helps. Once scar heals you can swim and pretty much do anything. Also that only has to be flushed every 12 weeks which isn’t a problem as chemo tends to be every 2 or 3 weeks depending on your plan. Had no probs with infection. As it’s under the skin there is nothing hanging out your arm. 
Chemo is a harsh drug and can damage your veins but everyone is very different. If they can use both arms that’s great. My veins would not have stood up to it so that was why I opted to go for it. I find that I hardly feel the needle whereas I certainly feel blood test needles and cannulas. 
It’s worth talking with your chemo nurses first about the options as they can check your veins and give you advice. You have to be happy and if the picc line or Portacath (arm or chest port) is not for you then you don’t have to have it. 
Wishing you all the best

Hugs from cuffcake x x x x x

I didn’t have sedation for the arm port they just numbed it. I think you can have sedation if you like or possibly if you have the chest one. 

Hi,

I totally understand how you feel about the PICC line. When I was first told I needed one I was angry and very distressed. There were lots of tears and I couldn’t talk about it at times.

I have now had a picc line for 6 weeks. When I first got it, I still hated it I couldn’t even look at it. Now I have got used to it. Don’t get me wrong I still hate it now. It’s a constant reminder and I will be doing backflips once it’s gone. (Please keep in mind I’m not a gymnast).

I will say though I appreciate having it during treatment. I know I would have got needle fatigue. Plus chemo can be so nasty to your veins. Also the treatment can be administered quicker via a PICC.

Ultimately it is your decision and if you really don’t want it. You can just have it via a cannular every time. 

Good luck with all your treatment and as I said I totally understand your reaction.