Yesterday I had the “Smart Port” inserted after my beloved PICC Line gave me a blood clot along with a huge allergy to all the dressings used to secure it.
From reading other ladies experiences with their ports, I had only the slightest trepidation about the procedure. From all the accounts, including my sister, who lives in Los Angeles and hates medical procedures of any kind, I was counting on sedation, such as the kind one is offered for an endoscopy, so that the experience would be simple and easy for me.
Much to my surprise the doctor informed me that sedation was not an option. She described what would happen to me, including the two incisions, the stitching, the application of multiple local anaesthetic injections, the insertion of the catheter and the creation of a pocket under the skin of my chest for the port.
The procedure lasted for an hour in which I lay on my back with my head turned as far to the left as possible, which is very difficult for me because of arthritis at the back of my skull. I was kept in that position while the doctor injected me 20 times (2 separate locations) with the local anaesthetic (ouch!) and poked and pounded and cut me, wiping away the blood I could feel dripping down my neck.
It was like being at the dentist forever, only no sound of the drill.
I felt awful and when it was finished my neck was killing me. There was no recovery room or recovery time. I could hardly dress myself after and definitely could not put on my bra.
I managed to meet my husband in the waiting room and began to cry.
After all the procedures I have suffered, from the drains, the biopsy, the operation, I have never cried.
I felt totally traumatised. I am going to speak to my CNS tomorrow and let her know how unfair it is to undergo such a procedure without sedation, when we are already suffering so much.
Has anyone else had a similar experience?
Also, is this photo what yours looked like afterwards?
Sorry to winge,
Laura
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Lindaura
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Winger away Laura , that was unacceptable that you had to go through that without sedation . We suffer enough trauma , without adding more .hope your feeling better now .
I agree that is unacceptable, I had a port fitted end of October I was really worried before I had it fitted but I need not have worried as I didn’t feel anything I was totally asleep for the whole procedure.. Just a small incisions right side of neck which was glued and a incision where they put the port in which was stitched on the inside hardly bruised at all , very neat .
Sorry you had to go through all that must have been really frightening for you .
Whinge away Laura. I had my port inserted here in France nearly all cancer patients have this done so it’s routine. I had local anaesthetic too, felt a bit of pushing, but otherwise it wasn’t a bad experience- it was covered for a couple of days and the district nurse removed the stitches after a week. It’s been in for over a year and is trouble free and apart from a little bump is barely visible.
Hopefully it’ll cam down and you’ll have no problems.
Laura your insertion site looks very red and swollen. I really don't remember mine being like that at all and I had no problems with the procedure under local anesthetic. Perhaps you should give them a call to check everything is okay?
I did call last night when it was darker red and inflamed looking. They said that was normal and as I did not have a fever, I stopped worrying.
I think a lot of folks have a dressing over it, but here they just use surgical glue, so everything is visible.
She really was poking me hard, so that’s why I have the bruising. And I think she should have applied the local the way a dentist does. Jab once. Let it numb the spit and then add jabs that are painless. She just jabbed away like I was a pincushion.
I don t have one but that does look traumatizing for sure.They probably had a hard time putting it in .Iam all for the sedation .I had an endoscopy with not enough sedation as I was awake.It produced a lot of anxiety in me and I was gaging the whole time.The nurse said should give her more sedation and he said no were good.No we are not good
That is truly awful, sorry Laura. And definitely not acceptable.
I commented on it in the other thread. Suffice to say that, while the site was somewhat sore for a week, my wound looked cleaner, and the sedation I received at my own insistence made the actual surgery a non issue. I also had time in a wake up room, but this was in Germany so might be different. Usually the insertion is done here via local anaesthetics as well.
Hugs and hope you will get to the benefits part soon. I feel as if I talked you into it... sorry. I do still love my port though. xx. Maus
I guess the USA just sedated and I think some hospitals here do also, or maybe it was just this particular doctor, who prefers her patients awake. Either way, I am complaining, because, like I said, we have enough horrors to contend with, we don’t need more!
I found the experience unpleasant but nothing like as traumatic as your experience. I do agree a little sedation would be best. My main wound was dressed but I'm pretty sure it wasn't as angry looking as yours.
Crikey! My port fitting experience was totally different! I had a light sedative so that I was still ‘with it’ during the procedure, but didn’t care what they did to me - I was nice and relaxed and sang along with the radio as they did it. Also, whilst I was stiff and had a bit of bruising, my port site didn’t look as uncomfortable as yours does and like Maus, within the week was back to normal.
Definitely speak to your CNS, and maybe get the port site checked over properly. I’m sorry you have had such a bad experience ☹️
That was all I wanted. Just some blissful sedation to take me away from, “oh no she’s making the incision” and “why is she pounding my chest like that?”....
Anyway, I am recovering and curious to hear other experiences.
Omg Laura that looks painful. Surely thats not right you had to go through that! Sending you a big gentle hug. Hope you are feeling more relaxed now xx Kathy xx
It did not seem right, but I think the port is in Okay. It was only that all the American ladies, including my sister, had sedation and did not have to endure the port as an ordeal.
I am learning that most still were bruised and sore, which I had not expected, but live and learn.
Hi again, Laura. The soreness should go, within 7-10 days or so. I took some paracetamols during the first days following insertion.
Try to keep the port free of infection i. e. put on disinfectant after taking off dressings / bandaid as instructed, then quickly put new dressings / bandaid on . I changed mine every 1 to 2 days until the sutures came out on day 10, if I remember correctly. Definitely aim to keep any contamination away.
Besides trying to keep it clean/keep infection away, I also try to avoid extreme movements with that arm/chest side, to minimize the risk and not dislodge the port. e. g. I won't sleep with my head on my right arm anymore, I won't stretch/contort that arm to scratch my back, and I won't do any heavy lifting on that side.
That might be unnecessary, but I'd rather avoid problems.
On chemo day, I apply a numbing Emla plaster on top of the port about an hour before the needle goes in, then take it off after an hour (the skin stays numbed for quite a while afterwards so the timing is somewhat flexible) . That way, I only feel a bit of pressure but not even the tiniest bit of pain. After chemo infusion via port, I'm generally told not to shower or take off the bandaid for 36 hrs.
I'm showering as I assume my dressing is waterproof. I think my insertion was as brutal as yours but I assumed that was because it was a "trainee" doctor and he wasn't very good at it. I just wish I'd been given more information as to what they were doing. And I was surprised when everyone disappeared. I did have a recovery room though. I was initially told I'd need to stay for an hour but this was changed to fifteen minutes as I needed to have chemo that day (postponed until tomorrow in the end because of low neutrophils).
Hi Helen. I'm using Octenisept. It's a non alcoholic antiseptic wound spray. Doesn't burn and seems to be easy on my irritable skin (that's without caelyx in the mix though) . Back in the UK I would just grab a box of non alcoholic antiseptic swabs/wipes from a pharmacy.
Mine was used today for blood tests. I was given the choice of not using it because of the heavy bruising as it was going to be painful. After discussing whether it would be more painful than maybe four goes at the veins we came to the decision to use it. There was a pain while she was looking for the right spot but second time it worked and I can't say was very painful really. Pressing on the cotton pad once the needle was removed was about as bad as it got.
Unfortunately, I didn't have chemo through the port as my blood results for neutrophils is worse today, not better and my Hgb has dropped to 85. I have to go back on Monday, Christmas Eve for the chemo, but some phials of blood were taken in case I'm to have a transfusion on Monday. I'm not sure if this is in addition to the chemo or instead of.
Good news that it was used. Did they put anything on it before using it to numb the skin? Everyone in the USA uses Emla plasters. Here they have something called Anetop.
I hope you get that transfusion on Monday. It really helps to rally you before an infusion. Takes almost 6 hours though.,,
Thanks. No numbing plasters, no-one has mentioned them. I hope I don't need the transfusion as it will be two hours or so for the blood results to know whether I need it, that'll be eleven o'clock, then six hours will be five o'clock and then the Cisplatin and Gemcitabine. The transport network will start winding down. I must say I am tired now by the end of the day and running for the train on Monday up the stairs, over the bridge and down the stairs required superhuman effort to push myself especially up the stairs and I've not noticed that before. I made the train thanks to another passenger who stayed with one foot on the platform and one foot on the train so the guard couldn't blow the whistle. It was only a second or two. Normally I would have walked through the train to get to the front but I just didn't seem to have the strength, so I stayed at the back of the train till we were nearly at Charing Cross that is, when I got some energy back.
When my hGb is 85 or so, there's no way I could run up stairs.. the most I can manage is a couple of yards sprint to get into a carriage on the flat.
So, yes, it is a superhuman effort and you must stop expecting to be able to be superhuman all the time. ( we know you are most of the time).. until you've picked up a bit. I certainly feel your treatment management does not support you in this respect!!
I had 2 units of blood yesterday, so it's probably now about 100.
I found the stairs out of the tube hard work last night, and this morning, my stairs at home are a lot more of an effort than normal, especially the daunting last flight to the 3rd floor!
Your body is telling you something and I'm pleased you listened to it and didn't walk through the train.
Hope the stairs get easier for you soon now you’ve had your transfusions. I’m off again to London for Handel’s Messiah at the Royal Albert Hall tonight but I’m leaving in the middle of the morning, so no rushing. I will enjoy the evening with never a thought of things medical except perhaps for this mess on my chest when I get a twinge or two. And I’m not going ice-skating tomorrow at the Natural History Museum as I think I’ll be disappointed with my performance. I bought Alan a new DSLR for Christmas and after a brief time in the museum we are going to take pics of as many Blue Plaques as we can until we come back home. It will be good practise for him in using the camera controls and interesting also. I’ve downloaded an app showing where they all are. Rufus is going to kennels this morning and I must get up soon.
That sounds brutal! I was given "conscious sedation" when I had mine put in--the same as for a colonoscopy. It did look all bruised like yours. I am so sorry you had to go through that. It's unacceptable!!!!
I am miffed to say the least and will bring it up to my CNS and maybe PALS, because anyone needing a Port has to be going through hell already, so this procedure should be made as pain and trauma free as possible.
Good grief that looks dreadful! I agree we have enough to cope with without being beaten up by the medics. I don't have a port but did have a PICC line and although no clot I had hard blisters which took ages to settle down and allergic reaction to the dressings which burned and brought off several layers of skin when removed, until they decided I needed a lighter one. It took months for the skin on my arm to heal.
Definitely complain that was not the way you should have been treated.
Do keep an eye on the redness as you don’t need to show a temperature for infection. My palliative care doc and oncologist said as a cancer patient your immune system is prioritising what it fights it may not see infection as priority at that time so no raised temperature
Oh Lindaura! I am sooo sorry you had to go thru this! I understand concerns about anesthesia but some procedures should use it routinely. I live in the US and was out cold for both insertion and removal of my port. And was in a recovery room after for both. Please make a stink about your experience. You deserve better!
Oh my goodness you poor thing! You're so right - as if we don't have enough to go through!! My port was inserted under anaesthetic and they even kept me in hospital overnight to make sure I was completely ok to go home. It did hurt like a bugger for a few days afterwards though. This was a week after being released from a three-week period in hospital following two major operations (debulking etc), but I'm sure it was their normal procedure for doing such an op. I would complain like crap if I were you! Sending love and well wishes! xxx Christina
Hi Laura , I thought I was a bit of a baby for moaning , I too didn’t find the portacath insertion very nice , was only offered local anesthetic and because you can feel it all I felt like I was on a butchers slab .My bruising wasn’t as bad as yours though and four months on I still do not like the sensation of having it under my skin .I hope you heal very soon and can get on with chemo .xxJuliaxx
Hi Laura , I live in West London and attend Mount Vernon hospital for treatment .Everyone is very nice it’s just that I wasn’t expecting the insertion to take as long as it took or be as intrusive .My initial draining and biopsy was a breeze in relation to it .If it helps a bit of “ t tree “ worked into a cream like aveeno should help with bruising and the last bit of healing when you can xx.
I’m so sorry to hear about this Lindaura. I have a ‘power’ port in my arm on the inside above the elbow. It seems like a rare thing but it is so much less cumbersome and etc. I don’t understand why they don’t do those more.
I don’t understand about the sedation either but I did have a similar process to what u describe with being awake and having a problem lying in the position. So sorry. I’m glad u will follow up with them. Take care and hope u have better luck with this one at least.❤️
Wow, Lindaura! I'm so sorry about your experience. I'm in the US, and was put under anesthesia for port insertion. Then afterwards the amount of bruising and residual pain was minimal. I have to say I've been very thankful to have the port, since it simplifies the infusions and it continues to serve me well 3 years on. The only weird thing is that only the oncology nurses are trained to use it, so they still have to set up regular IVs every so often to do blood draws or PET scans. Hope things settle down for you after this! Best wishes!
Hi, I had a port fitted and was put to sleep for the process, sounds like you've had a rotten experience. I would definatly complain. Seems very unfair to put you through that...
This is terrible! I asked for heavy sedation and slept right through the procedure. I had trouble holding my head up for a day afterwards and was a bit sore but remember nothing of the procedure. Hope you feel better soon.
A letter/email of strong complaint, covering all the points, including the bad attitude, to the hospital PALS service, as well as a phone call to your CNS, is definitely called for. Whoever did that to you either hasn't had much experience at doing it, or was having an off day... its always luck of the draw whenever any medic wants to insert a needle somewhere for any reason whatsoever - some are very experienced and very good, others are absolutely terrible and you end up like a black and blue pincushion. And often, the terrible ones are the most unkind...
As for 'no temperature, no infection' I've never heard so much cobblers - yes you will have a temperature with an infection, but only once its in the blood and circulating round the body, by which time you're in a serious state anyway. And cellulitis, when it starts, looks just like an angry bruise, and you certainly don't feel ill initially with that... and nurses are not always good at recognising cellulitis in the early stages, was my experience - the triage nurse in A&E said it was just a bruise (said in a somewhat impatient, dismissive tone) but made me wait to see the doc anyway 'because you've been registered as attending today'. Good job I did wait, he diagnosed cellulitis immediately...
It is a sad fact that we have to be on top of what they (the medical profession) are doing, and not assume they do know and do their very best to keep us comfortable, especially in regard to smaller procedures. Just because they're medically trained, don't mean they're good at their job or know what they're doing.... it takes more than passing a few exams. So its necessary to ask all the right questions beforehand, I'm afraid - if you had, you'd have found out they weren't offering sedation. In circumstances like that,, there's nothing wrong with playing the 'oh no, I can't cope without sedation' and generally seeming distressed - they will usually offer sedation for particularly nervous (neurotic is the term I suspect they use, but who cares what they think, so long as you get what you want!) patients. I actually got up and said I was going home without the procedure because the endoscopy doctor was insisting sedation wasn't necessary on the day, even though I'd opted for it beforehand... at which point, he caved in. I got my sedation, he did the procedure... you just have to learn to accept being perceived either as 'difficult' or 'neurotic', whatever it takes... but possibly, we only learn this after we've had these unpleasant experiences.
Thanks for that. I did plead, but did not go as far as refusing the procedure, because my infusion is Monday, 7 days away from the Port insertion and I didn’t want to risk having it without. ( I had the PICC line before my second infusion during first line, when my vein suddenly closed up and there was spillage over my wrist, causing great concern and lots of steroid injections).
In retrospect, I believe this doctor just wouldn’t shift, no matter what I said.
Nothing else you could have done on the day - there's a vast difference between a simple gastroscopy to see possible problems and knowing you have cancer and need that port to be fitted to get your treatment. In other words, they had you by the short and curlies (if you've any left currently!) and we've all been there... its not pleasant, is it... still its behind you now, thank heavens, and all that needs to be done is the complaint. I hope the treatment goes well...
I'm so sorry for your port experience! I'm from the US and although I was not totally asleep, I was in a twighlight zone-I was aware of people around me, but could not feel a thing except for some tugging. I did have a dressing over mine for 72 hrs, had to keep it dry for 1 week, but it has healed fine. I hope the swelling and redness at your site is subsiding, and it is feeling more comfortable in general-if not, let someone know.
I'm glad you are going to lodge a formal complaint; whoever inserted your port needs a lesson in bedside manners. Again, I'm sorry you were treated in such an unkind manner, but hope the convenience of your port makes up for some of the trauma you've experienced.
I’m so sorry you had such a hideous experience. I am in the U.K. and was put under a General Anaesthetic for my Port insertion and had no problems. Please Do make sure you have a box of Emma tubes to numb the area before they access it with a special sort of plug in needle. I almost hit the roof when the cream had worn off once and almost hit the poor nurse who had arrived very late! Some brave souls seem able to cope without but not me. Expect a few teething troubles to start with and make sure it is flushed every 4 weeks if not in use to keep it in good working order. Good luck and I hope you get the benefit of it and your bad experience will be a distant memory. Xxx
Thanks so much for you experience and advice. The nurse who briefed me on the port dismissed the idea that I would need anything to numb it when It was accessed, but I finally got her to tell me the name of a medication that would do the trick.
Just weird behaviour on their part.
Every other procedure I have undergone had been done with great care and compassion.
Has your port been used yet? I had chemo on Christmas Eve and I did feel a sharp pain when the needle was going in, but there was still a lot of bruising, which has mostly disappeared around the site now.
I met with my team a few days before infusion time and told them about my experience and how I thought it was wrong to subject any patient in need of a port to such a procedure without sedation.
They had already heard from my CNS and seemed to be sympathetic.
I also asked for a lidocaine cream, like the Emla I had been told about, and this is evidently not standard here, but they prescribed a topical gel Called Anetop, which you apply an hour before infusion.
It worked a treat!
I had a great nurse for the infusion, who contacted the Port easily and I only felt a slight sting later that I think was from the bruising around the port.
The infusion went fine and I felt really well for the rest of the day.
At night, I noticed an extra benefit from the steroids.
The rashes I have from what I now know is caused by the antiseptic Cleanser they use called Chlorhexidine. My team gave me a simple alcohol cleaner that worked fine.
And I noticed at the end of the day that the steroids stopped the itching from the old rashes and they were finally beginning to fade!
Also, good news, my CA-125 dropped after only my second infusion of Carbo/Caelyx from 473 to 87!!!! What a relief!
My experience was awful as well, I laid on the table for 2 hours and had the pain in my neck for days and days. They apparently decided to use me as a teaching case, I felt like a piece of meat being jerked around. It was definitely traumatic, I actually had nightmares for a few days afterward. This doctor never even introduced herself to me, she will NOT be the one taking it out, I live in the U.S. by the way.
I totally agree, it should be better 😁 you're awake, you're just "not supposed" to feel anything. I will say everyone else at the cancer center has been fabulous!
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