Where (not) to place a port

Hello Ladies, I wanted to share a cautionary tale regarding port placement in hopes that it will help someone else in the future.

Prior to my cancer diagnosis, I had experienced severe blood clots (causing bi-lateral pulmonary embolisms which nearly killed me). The cause of the clots was not immediately known and not due to anything "usual" so we investigated further and discovered the cancers. In a way, a blessing, I suppose.

Prior to my hysterectomy, the doctors (pulmonologist and oncologist) decided that I should have an IVC filter inserted to catch any future clots formed in my legs and preventing further lung damage. As cancer and chemo are thought to trigger clotting, this seemed like a good idea. I was told the filter was temporary and that after surgery and a few rounds of chemo, it could easily be taken out. If left in too long however (more than six months) it could be a bit of a challenge to remove so we set a date well in advance to have it removed.

Prior to beginning chemo, I had a port installed to help preserve my veins and for ease in administering chemotherapy drugs. I remember asking which side to put it on, whether there was a "better" side than the other. There was no "right" answer and as the room was set up to have the surgeon sit on my right when performing the procedure he placed the port on my right side.

The surgery went well as did the first few weeks of chemo. I then got an infection in the port and had to be on antibiotics for several weeks, during which we did not use the port. We resumed again thereafter and got three more good weeks from it before it formed a clot where the catheter was inserted into the internal jugular vein. I was hospitalized for a day, treated with heparin and released. No further issues through the end of my first full treatment (18 weeks).

Today, I went to have the port and the filter removed...(the port because I did not trust it would remain trouble free...the filter because it is nearly six months and time for it to come out). The port removal was a piece of cake - easy, relatively pain free and fast. Hooray!

The surgeon who was to remove the filter then came in and said he could not remove the filter as the vein through which he had to enter to run the retrieval tools was collapsed and scarred and thus impenetrable. This is the same vein that had clotted and the same vein in which the port-catheter was inserted. There are no other veins he can use without significant risk and possibly life threatening consequences so he sent me home with the belief that what was to be a temporary object in my vena cava is not permanent.

Had they placed the port on the left side of my body, this would not have been a issue. Unless I undergo a much more risky retrieval procedure (which I'm not inclined to do as I am not yet recovered from chemo) I will now have to be monitored for one more "risk" for the rest of my life thanks to a doctor/system that did not think far enough in advance.

I'm happy to provide more detail as to how/why this is, but just want to offer this advice....If you have an IVC filter or feel you will need one in the future, please have a detailed discussion with your onc about long term issues and then, have your port installed on your left side. It will save you from a troublesome process and much disappointment...none of us needs any more of that as we deal with many other issues associated with this disease.

Take care of yourselves and of each other.

[Tesla_7US]

Almalyffe, thank you very much for sharing this information. Ironically, my port was installed on my left side at my insistence because I have lymphedema from mastectomy on my right side. No one ever mentioned patient benefit from left side installation. To the contrary, I was told repeatedly how inconvenient it was for carers to have to reach over to my left side!

[Naimish]

Hi. Whereas IV ports are beneficial for drug administration and a big-time vein saver , the chances of infection are also very high. My wife had her IV port on the left side but it got infected after the third chemo sitting, causing mild fever on and off. Ironically the docs were unable to find the cause of the fever sooner and she had to go through multiple tests. Finally once detected the port had to be removed and she went through the final two w/o the port. So, it's the good and the bad of ports.

Naimish

[Hidden in reply to Naimish]

Thanks for the reply Naimish. I am inclined not to use a port again when/if I recur. Though worried about the destruction of my veins, it seems the better way to go.

[KrazyKat68 in reply to Hidden]

My veins have always been bad and now since having so many blood tests they are worse. They can do blood draws, but my veins will not hold up to IV's. I have never had any infections thank God. I would be lost without my port.

[111173]

Hi Almalyff - thanks for that, very interesting. Luckily my port is in my right side has been there for two years and so far has not caused any problems - long may it continue.

Lynne x

[January-2016-UK]

Thanks for the advice Almalyffe. I hope the monitoring of the filter works out but as you say it's one more risk you could do without.

All the best!

Helen

[Maxjor]

So important to tell others so they are forewarned and forearmed! When I had my IVC filter put in prior to surgery (I also had bilateral PEs) I had to sign about 10 pages of documents telling me they may not be able to get it out ever and that it would not be the end of the world if it was in there permanently. I had that minor surgery to remove it and I was one of the lucky ones--it came out but NOT without pain and alot of trying on their part (I was in a twilight sleep and felt like (kind of dreaming) the doctor was hitting my neck with a hammer multiple times to "jimmy" it out. But mostly wanted you to know they kept telling me it would be safe to keep it in. I don't know what the monitoring entails (part of our scans at future checks?) but thank you again for letting everyone know.

[Hidden in reply to Maxjor]

Glad yours came out though sorry it was a bit challenging. Hoping others with a filter have a positive experience too. Best wishes.

[Yoshbosh]

Hi Almalyffe

Thank you for the warning - I had my port fitted today and convinced them to put it on the left hand side after reading your post. I don’t have an IVC filter, but who knows what could happen in the future.

I’m sorry you have had so many problems, but your cautionary tale has been worthwhile.

Vicki xx

[January-2016-UK]

Hello Yoshbosh, every time I see a post from you, I keep meaning to ask, now you've moved to private treatment, if the chemo ward is different. I imaging soft music playing in the back ground, a few fountains, vibrant green ferns being gently sprayed with water from said fountains, soft down-played lights. Luxurious leather chemo chairs and unlimited tea and coffee service.

Is it like that? When I close my eyes with my noise cancelling ear phones, that's where I imagine myself to be.

[Yoshbosh in reply to January-2016-UK]

Haha! Yeah, I imagined that too, but the reality isn’t quite the same 😂 I guess because it’s private care in an NHS hospital, it’s not quite one thing or the other. It’s perfectly pleasant, but isn’t quite the private hospital experience that I’ve had when I’ve used my insurance for other things in the past.

For example, I was in today for my port fitting and chemo, nice private room with an en suite bathroom and giant tv...BUT, they forgot to order my chemo despite the Dr signing it off at 11am once the port was x-rayed and fine, so I didn’t start treatment until around 3pm. Even worse, they forgot to offer me any lunch 😫. I’d dozed off after the sedative, woke up hungry and thirsty at 12.30pm so buzzed to ask what time the lunch service was, only to be told it had been and gone! The poor guy from catering couldn’t have been more apologetic and managed to bring me a cheese salad eventually, but that wasn’t really on. My husband had a moan to my CNS to tell her that it’s not what we expected from private care. The treatment delay meant we didn’t leave until nearly 7pm and I’ve checked in at 7.30am for the port fitting.

It’s been a looong day! 😴😴

I only wish it was like your vision of what private treatment is like!

Vicki x

[January-2016-UK in reply to Yoshbosh]

Oh well, I can keep hold of my vision in my head, even if it's not realistic. What a long day, I'll leave you to rest. I always either make or buy my lunch on my way in now, having missed it so often. I've been through the menu anyway.

[Hidden in reply to January-2016-UK]

Not my experience either. I am having treatment in a very small private hospital. I miss the buzz of the new Churchill Hospital in Oxford where I know everything is new and state of the art and all experts on site. Never had a proper chat with the general cns here. Fern was knocked over during night before my first visit and had to be cleaned up! No fountains, there is soft music from a radio in the corner. Lunches are good though but chemo so quick I need to ensure I arrive late to have time to eat it!

[Kryssy]

Hi,

I cannot think how infections get into ports. When I'm in chemo the amount of effort which goes into keeping everything germ free is unbelievable. The nurse and I wear disposable masks, everything comes in a sterlized pack which is meticulously opened bit by bit as things emerge and are prepared. The injection of "unblocker/tester" is got ready and the bags are up on the hooks ready - but not the carbo as that comes later in a sealed unit. I am swabbed around the port area four times in all, iodine, something clear, then a blue sterlized cover is put across me from neck to waist with a hole in it and I'm swabbed again, iodine and then the clear stuff. Then the port package is opened and inserted. No pain as I've been wearing my lidocaine patch for over an hour. The line is tested as open and working by the syringe. Then a sticky transparent thingy goes over the port and the blue cover is removed.and the pipes hooked up by the nurse using iodine swabs. This is all done so quickly that there's no time for germs to get in. Taking it out is a similar procedure but backwards. I keep the sterile dressing on for the rest of the day and given another in a sealed pack to change it for overnight. I keep the masks for hubby for when he's doing dusty work in his man cave. Some take them home for journeys on planes etc. to keep the beasties away. Surely this is the way it's done for you all? If not then there's something amiss.

love Kryssy xxx

[Hidden in reply to Kryssy]

Wow, I don’t get all that. No masks, not always sterile dressings. I am allergic to iodine and the transparent dressing. Sometimes the nurses have to go away in their blue gloves to collect the dressing for me or to do things like help search for a pump etc.

[Kryssy in reply to Hidden]

That is disgraceful!! No wonder there's infection. There are antiseptic lotion dispensers all over the clinic and in all the pubic areas. The staff are at them constantly. I use them each time I have used the loo and before I eat anything. Everyone is aware that they have to be kept as germ free as possible. Even the loungers are wiped down with antiseptic when someone leaves and before it is occupied by another patient. Each nurse has a trolley with their port equipment on in sealed sterile packages - and that includes the masks and gloves - and it's sterilized before the packages go onto it and then again afterwards. All the loungers face towards the central nurses station so there's nothing much else to watch going on and every patient can be seen. We have one nurse per two patients and they are with us every few minutes checking we are ok. When everyone is hooked up and it's a bit quieter and the on duty oncologist has been around to see everyone and left, one of the nurses usually comes for a little chat and goes through my week's blood results with me as I leave too early in the morning to see them in the post. I wish it was the same for you guys. The one downside is that none of the patients are allowed to have a "buddy" with them, unless they are children or severely disabled. Then they get their own room. I've had my own room twice when all the loungers were taken and it was lovely. A proper bed - chance for a good sleep. This costs me nothing even though France does not have a system like the NHS. Everything for cancer patients is free including my own personal taxi to take me to and from hospital.

This is not meant to be a bragging reply and "Oh, look at me. How pampered am I?" but I do feel so guilty sometimes when you girls struggle to get avastin, wait ages for scan results etc. and don't get to see an oncologist, just a minion. It's is totally and utterly wrong and it's time to change.

End of rant. Sorry if this offends anyone. Truly sorry.

Love and hugs

Kryssy xxx

[Kryssy in reply to Kryssy]

P.S. Ports are standard practice here. No-one has their chemo in by veins. xxxx

[Hidden in reply to Kryssy]

My impression is that there is greater variation here (aka postcode lottery).

Certainly my experience is not that dissimilar to yours, except our beds are in a separate section of the main chemo suite, and yes, doesn't it make a difference if you're in for a long day.

But Avastin does seem to be more generally available at stages 3 and 4, BRCA or not, in France, though they are clawing back on its use in breast cancer.

Having visited friends elsewhere, some suites are pushed for space for visitors, though they're allowed. I've really appreciated that when I've been in for long days.

When you come across unacceptable practice for people who are already vulnerable, it is maddening. And this forum does report too many instances.

I do agree that the standard use, or at least the offer, of a portacath would make life easier, rather than waiting for the point when problems have arisen.

This would also have the effect of saving the veins for other services which don't have enough contact with portacaths to use them regularly!

Onwards and upwards!

[Hidden in reply to Kryssy]

Well they are good at using the antiseptic lotion dispensers, we each have a pod and they check on us regularly but we don’t see an oncologist - just every 4 weeks on week off chemo in clinic. We can have a buddy with us but provide our own transport.

[Hidden in reply to Kryssy]

I'd always understood the infection came from the inside, when we were otherwise immunosuppressed and had circulating bugs and stuff.

Broadly speaking, the procedure is the same here, with similar precautions, but without a couple of costs!

[Kryssy in reply to Hidden]

I think I've said enough in the previous reply. Time to shut my gob I think....... xxxx

[Hidden]

Can you get the cANcer charities to include this information on their websites? It will be very useful for others to know in advance and a reminder to specialists. Is there any NICE guidance?

[KrazyKat68]

So sorry you had to go through all of that. I have been lucky in that so far I have not had any trouble with my port which I have had since summer 2015 and although about 7 yrs prior to cancer diagnosis I did have a blood clot in my optic nerve but it dispersed and everything was ok.

I have never hear of IVC filter until you spoke of it. It sucks that there is nothing they can not remove it. I hope you have no issues with it. Thanks for all of your info. Take care!