Portacath or Hickman line?

[Dilloj]

We had the devastating news that our 6 year daughter has to have chemo after her bloods were not right. Having the news a day before Christmas has rocked our world.

We have to now make a decision on having a Portacath or Hickman line in the next 24 hours. I would really appreciate if any mums could share their experiences? Also what were your concerns, as I am sure you were faced with the same question and thoughts we are having currently?

Thank-you so much in advance.

I’m so sorry.

My son had a portacath - the advantage being that it’s accessed only when you need it. Otherwise you’re tube free. To access it they put numbing cream on the skin above the portacath and use a cannula there... which stays on the skin during the treatment required and is then removed.

My son had 6 weeks of radiation under general anaesthesia every day and the nurses would access the line on a Monday and remove it on a Friday (the portacath was for the anaesthetic injections). Leaving the weekend tube free.

How often will the chemo sessions be?

We found the portacath worked fine and in our circumstances I would do the same again.

Iirc portacaths (the ones under the skin?) mean you can go swimming, have baths etc. I had a Hickman, and while it was great, you can't swim or submerge in a bath. But you don't need needles to access a hickman which was a big plus. It felt less invasive. Maybe needles might be a bit scary for a 6 year old?
I'm so sorry to hear your child is so ill. Sending you lots of love XXX

Thank-you so much for your response. We would like to avoid needles but we just want the best if you can imagine. Did you have to change the Hickman for long?

Thank-you for your response. We are not sure how much chemo yet as we only got the news recently and they are still doing the tests. I am assuming that your son had a very regular course of treatment to start.? If you had to have treatment only once a week after leaving the hospital, would have you gone for the other option?

Did you have any complications with the portacath? I just worried about having something inside which have issues, which that may mean an operation, to get this back out?

We are due to have a conversation with the hospital this afternoon, so I am just trying to do as much research to ask the right questions

I’m so sorry that your daughter has to go through this. Although I am an adult I thought my experiences may be useful.

I have a portacath fitted, if you put the numbing cream on at least an hour before access is needed you virtually do not feel anything, just some pressure and a small scratch. The attachment they used does not look like a needle, more like a bottle cap with tubes attached so you may be able to avoid mentioning the needle. I have tubes of cream at home to apply before my appointment.

I have had the portacath in for about six months this year and again for about eight months a few years ago and never had an infection. You can forget about it in between treatments as it is under the skin.

I had it fitted under sedation in theatre and don’t remember anything about the procedure, I think I slept through it all.

I’m am so sorry you all have to go through this and send my best wishes.

I don't know how a hickman line is fitted, but the portacath was fitted under general anaesthetic (for children this is how it's done).

My son didn't have chemo - just radiation (brain tumour). So it was 6 weeks and done... after surgery.

If he had needed treatment once a week or once a fortnight - I would have still been happy with a portacath. A hickman line is a bit of a constant reminder & with kids always tumbling about and dressing etc - it's just easier not to have tubes in.

There's no perfect solution though, it's a trade off. I have a friend whose portacath became infected & needed removal - it was very unusual - she was going swimming too.

My heart goes out to you - a diagnosis like this is unimaginably stressful. And now in the midst of all that's going on - it's awful. You will take a while to process it: months and beyond. Try not to look into the future and imagine what comes next. Take one day at a time and gather your virtual support if you're unable to see family & friends.

My DS had a Hickman line. They put it exiting out of his back instead of his front as he has learning difficulties and we couldn't be sure he wouldn't pull it out.

It was very easy for them to inject as needed. No numbing or creams needed. Half the time, he didn't even realise what was being done. This was a big advantage for us as he hates needles.

Placing of the line was done under general anaesthetic. He has a small scar on his neck and a larger one on his back.

He couldn't have a bath but we managed well with washes. You have to be careful not to catch/pull the line so I was a bit on edge whenever his siblings went near him. I think I shouted "mind his line" about 80 squillion times!

Best wishes to you and your family.

Should have said the line made it very easy for them to *treat him as needed. Not inject.

It's surprising how much you forget when it's all passed...

Hi,

I'm very sorry that you and your daughter are going through this. You might like to know that recent studies have shown Portacaths to have a significantly lower risk of complications due to infections or dislocations, breakages etc. But of course you should discuss this and any other worries with the team at the hospital.

Fingers crossed for you.

My daughter had Hickman line as a two year old with leukaemia. She coped okay with it, it did need regular flushing, but made medicating needle free. I hope your daughter makes a good recovery.

Hi I’m so sorry your family is facing this devastating news. My ds was 16 months old when he was diagnosed with AML. We weren’t given an option so he had a Hickman line. It did the job over the 5/6 months of treatment but an added complication is that if you get breaks at home whilst on treatment (we were 4/5 weeks on hospital then week at home x 4) if your child gets a temp you have to go back into hospital for 48 hours with IV antibiotics. There was also quite a significant waiting list to get them removed. We also just did bed baths for the 6 months as didn’t want to risk splashy bath and line infection.
Here to answer any further questions or offer support.

Thank-you. Would you gone for the other option if you had a choice?

I honestly don’t know. I’d have to research it and weigh it up. Do you have an allocated Macmillan nurse? I’d be tempted to ask them to give the pros and cons and best option.

Hello - have just replied to your PM but found your thread too now.
My daughter was also 6 at diagnosis. Just to add - while on chemo she’ll still need admission with any temperature spike whether you go for Hickman or port. I think unless looking at very frequent treatment I would go for port.... do you know what chemo / how long course of treatment yet?
My daughter had 9 cycles of Inpatient chemo over 6 months with weekly chemo for the first couple of months plus proton beam therapy (though she had awake so didn’t need access for that)
Both are likely to need GA to put in and remove in a child and I don’t think port is usually a lot more complex to remove. My daughters port removal was done in 45 minutes or so and she was bouncing about again within a couple of days. She was much more sore when it was put in.
Please message me again if I can help any more - happy to send photos of my daughter with portacath in / chat through impact of chemo on 6 y/o / whatever.
Sending so much love. What a shitty Christmas
Xxxx

Btw there are also a couple of v active Facebook groups supporting parents in this position. Feel free to PM for links xx

So sorry @Dilloj , that's sad news

My son had a port (aged 6), it was good that he was able to have baths etc, we struggled a lot with counts so swimming was rarely a possibility. He had a couple of nasty infections in it, but thankfully didn't need it replacing. The hardest part was how much he hated having it accessed, but we worked with the play therapy team

Wishing you well xx

@Dillojon

Thank-you so much for your response. We would like to avoid needles but we just want the best if you can imagine. Did you have to change the Hickman for long?

You'll probably have a Macmillan nurse you can speak to about this as there is positives to each one. I had mine for about 8 months. It needed flushing at least once a week, and the dressing needed changing probably a bit more regularly than that. I changed the dressing myself.

They're really secure when they're in place - the amount of times my over zealous ds grabbed mine and yanked it!! It never budged.

Hopefully your appointment today will shed further light. Sending love to you and your little one X

I'm sorry you're going through this and I hope your daughter makes a speedy recovery. My son was 3 when he was diagnosed and had 3.5 years of treatment, he had a port and it was just brilliant. He soon got used to having it accessed, he didn't like cream as he didn't like the sticky plaster they put over it whilst the cream worked, so he used to have the numbing spray. We had no issues at all with it and he'd happily go along with the nurses by himself to have it accessed. The plus side was when he wasn't in hospital or having treatment he had no tubes or anything and he could go swimming etc. It is a small op to have it removed but by that point he was under anaesthetic every 3 months anyway so it wasn't an issue.

Thanks for the response.

message.

My daughter had port put in today. Have had a few issues with the drip and a 2/3 flushed already to make it work

I am being told this is normal when it’s very new... I Just wanted to check if you had similar problems at all? As you can imagine it was really hard going to get this fitted so, it wouldn’t hard to take if this hasn’t been fitted correctly.

Thank-you inadvance.

I'm sorry it wasn't plain sailing - this is nerve wracking. I don't remember similar issues, but I don't think the drs/nurses will mess around - they will want to ensure that the port works just as much as you: so if they're saying it's functioning properly now, I would take their word.
When will she be accessed next?

Just saw this and I wanted to wish you all the best of luck. It’s a place no parent ever imagines they will be, but you will be surprised at just how strong you can be. We are waiting for results of a PET scan for possible relapsed Hodgkin’s for my son, and it’s a horrible place to be, but we know it will feel a bit better once we have a treatment plan in place and can get going. He’s likely to have a Hickman line put in but this is all new to us as it was surgically managed last time.

Just saw this and wanted to say good luck. My daughter had a port fitted about eight years ago when she was only 4, and it has been brilliant. She has cystic fibrosis and needs iv treatments every 3-4 months for two weeks at a time, so her port means fewer needles and now I can do her meds at home which is a relief at the moment.
Her port is also flushed every month to ensure it stays clear. It was flushed several times when it was first fitted, I still worry it wont work even now, but it hasn't failed once and has been knocked about regularly as my daughter loves dancing and gymnastics.
I understand that its different for chemo, but just wanted to reassure you that once you get used to it, it can be fine. Her port literally changed her life. No more screaming and being held down with a nurse on each limb, just to get a cannula into her. She doesn’t even bother with cream or spray now before it’s accessed.
Sending love at a difficult time, I hope things go well for you all.