CAN ANYONE HELP ME ON THE FITTING OF A PORT PL... - My Ovacome

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CAN ANYONE HELP ME ON THE FITTING OF A PORT PLEASE

spanishanna profile image
26 Replies

Can anyone give me some info on the fitting of a port. I have endured about 5 years of chemotherapy, with no light at the end of the tunnel and my veins are now collapsing and I am finding it very difficult and painful when I have my chemo.

I am a real coward for pain and my GP informs me that a port can be fitted under local or general anaesthetic and also whist the fitting is in process, they have to do special scanning to make sure the port is in the correct position.

Does it still hurt when they insert the catheter into the port when you have bloods or chemo and will I be doing the right thing asking my Onc. about having one fitted ? My GP did say to have one fitted under the Spanish healthcare system is a bit barbaric, so that put me off, but I think the Insurance Company will be wiling to pay privately for me to have this procedure done.

Any help please would be greatly appreciated.

Love Anna x

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spanishanna
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26 Replies
nandi profile image
nandi

Hi Anna,

No experience with a port, just wanted to wish you well.

Love Dorothy

MargaretJ profile image
MargaretJ

Oh Anna I do feel for you. My veins are giving up and I may need something similar next time. So far the only mention has been a hickman line or central line both of which can only be left in for a limited period and need redoing so I am interested in the port and all the info from M.

Good luck to you! I had not realised you had to have insurance as well as health service in Spain! I assumed that ex pat residents had to pay state healthcare similar to NI. My ex husband and his sister both live in Spaiin and there has been no mention of additional insurance. Must ask my kids.

Margaret

lill profile image
lill in reply to MargaretJ

Hello Anna,

The comments above are very reassuring and from people who have experienced the introduction of a post. In terms of the pain when they have to use needles for bloods etc, I think a good way to deal with that is to tell yourself that although it can be sharp, it is virtually momentary, not ongoing. Here's wishing you all the best with the implant. Lill

Frenchdeb profile image
Frenchdeb

I have a port which was fitted under a local. The procedure was weird rather than painful - just the fact of hearing the surgeon and nurses chattng away and being pulled about was odd but I couldn't say that it's been at all painful although I always know it's there (it's just under where the adjuster is on my bra' strap!)

Here in France we get an anaesthetic patch to put on two hours before the chemo so I have never even felt the needles going in. Brilliant thing!

michelle2 profile image
michelle2

I had a port fitted a couple of weeks ago. I was really nervous as I had it done under local rather than general and I'm a real 'wuss' when it comes to hospitals and 'ops'. However rather than me 'building myself up', the actual procedure was not bad, as said before, just weird. I didn't like the feeling of the tube being inserted, but had no pain at all. I've had my first chemo treatment and having the port is great, I previously had chemo without a port and this way is so much easier. It has felt a little alien to me having the small bump in my chest, but my head is getting used to it now. I would say, go for it and be positive. Good luck with your treatment. M

Hi Anna,

sounds like the answer to a dream. Next time I need chemo I think I will have to have something as my veins are shot to pieces, only the most experiences nurses can get one. I had mentioned having soemthing last time, but they thought they could manage and see what happened. Fingers crossed it will be a long time until I need it.

Good luck

Hi Anna,

I had a PICC line put in. This is inserted just above the elbow under local anaesthetic and xray guided. Bit of pulling but no pain. Picc lines are similar to Hickman lines. So much more comfortable than having the poor nurses searching for a vein in our well used veins.

Hope things are improving for you.

Luv'n'hugs

Sue x

spanishanna profile image
spanishanna

Ladies, thank you so much for a great response. I have already got a letter today from my Onc. to have one fitted if I need one. I will go for a port as obviously living in a hot climate we have a pool and I do swim.

One thing that has thrown me though is my GP here suggested a general surgeon would fit it, but Onc.was amazed by this and says a radiologist fits them here in Spain. Any comments please again would be greatly appreciated, although reading your posts some of you do mention the word 'surgeon'.

Margaret, I will answer your question on insurance and state health care here in Spain. When we retired we were under pensionable age so we transferred our UK private insurance with PPP AXA through to Spain. There is no free healthcare under pensionable age unless you work and pay into the system. Once you reach pensionable age the UK has a reciprocal agreement with the Spain re health care, so we are now entitled to free state healthcare.

Of course when my cancer started I chose to go the private route and am very pleased I did, as the care in the state sector is very different here to the UK. But once I went onto drug trials the insurance company could no longer fund them so my Onc took me onto the Spanish state system. I now combine the two, having my scans done privately and I will have a port fitted privately.

Thanks again you have answered my question.

Love Anna xx

MargaretJ profile image
MargaretJ in reply to spanishanna

Hi Anna! Thanks for the info! Sounds as if you have the best of both worlds! My son wanted me to have treatment privately when I was diagnosed but my GP said he would not use that route even if it were free because it is not holistic.

Good luck with the Port!

M

in reply to spanishanna

Glad you are on the way Anna! My tip would be to ensure they sedate as well as give local. The once I did not have sedation was deeply unpleasant, the other time was a breeze as you can entirely disconnect from it. Both times it was done by the radiologist as they use the scanner to guide them inside you.

Love

Sue xxx

Sue_H profile image
Sue_H

Hi Anna

I had a PowerPort fitted when my veins gave up after 4 rounds of chemo, and I can honestly say it was the best thing I ever did. I used to dread chemo sessions, and often ended up in tears as they had to insert 4 or 5 cannulas each session. With the port, I hardly even notice I'm having chemo! And, as others have said, you hardly know the port is there, and you can swim, take showers etc without worrying. Mine was put in under general anaesthetic but it's really quick, I was in and out of hospital within 4 hours.

If you can, try and get a PowerPort, as it can then be used for the contrast material in CT scans.

Good luck!

Sue

Jacks150 profile image
Jacks150

Hi Anna,

I had a port fitted last November but had to have it removed 3 weeks ago. It was fitted under local anesthetic by a radiologist. I had my last chemo today via cannula but when I need further treatment I plan to have another one fitted.

I will tell you what happened to me but please don't let it put you off as what happened was very rare but I just wanted to explain so this doesn't happen to you (or any one else).

I had the port fitted on a Tuesday and was due to have my first chemo later that day however there was a 2 hour delay with the patient before me. As there was no consultant on duty later that day they waited to the following day before doing my chemo.

The nurse tried twice to get it in but it had twisted slightly so I had to have an

x-ray to check it. It was okay but slightly tilted so another nurse who was more experienced tried to fit the needle. The local anesthetic had worn off by now so it was very sore. She wasn't sure that she had fitted it correctly but then changed her mind and put the pre-meds through which seemed to go in okay. We then started the chemo and within 5 minutes I had a real burning sensation down my arm. I called the nurse and they stopped the chemo immediately.

The consultant checked it and didn't think it had leaked it was just very sore but they finished the chemo through a cannula.

I was in a lot of pain from it but felt sure it would settle down. It was still very painful and bruised ( in fact my whole breast and chest was bruised) when I had my second chemo 3 weeks later so again couldn't be used. We left it another week then I went to have it flushed where they found a little pus in the wound so I had antibiotics for a week. I went back to get it flushed and ended up in theatre again so they could fit the needle to flush it. This was when the radiologist told me the chemo had leaked and damaged the tissues around the port. He did leave the needle in so I could have my 3rd chemo put through it 2 days later. It was brilliant and so easy but I was still in a lot of pain.

I couldn't sleep at night because it hurt so much every time I moved in bed. I couldn't bend over or carry too much because of the pain. Great fun as I am still working as a childminder in between treatments ( however I managed to pass my ofsted inspection between treatment and got outstanding - amazing what you can achieve in severe pain)

I saw my oncologist who actually apologised for this happening to me but I don't think it was anyone's fault in particular just a set of circumstances. We dosed me up with pain killers for the 4th treatment and numbed the area with some special cream but it was still so sore that we couldn't fit it properly so not used again.

I then decided to have it taken out as I really could not stand the pain anymore and I hadn't slept through the night for two and a half months. It came out easily but with loads of blood and gloop ( as they called it) I have been left with some scar tissue under the incision area and just below but it doesn't hurt.

I would say make sure they fit it in the right place. I have large breasts so it should have been sited higher up also if they are going to do the chemo that day or even the next day ask them to fit the needle in place for the first one so the chemo can be put through easily.

I will have another one fitted on the other side when I need one and have already discussed it with the radiologist. We are going to mark the area to fit it before I am laying down.

Anna go for it don't let this put you off but just be aware if they are not sure the needle is in properly don't let them use it. It is very rare what happened to me.

Good luck Jackie

in reply to Jacks150

I had the same issue with the needle not in my IP port properly Jackie .... They always struggled to get the needle in, and it was always sore after a few attempts. One time they missed, it flushed OK, and the nurse then pumped a lot of saline in under the skin through my port. I noticed the problem. We then had to postpone chemo for 24 hours while the big bubble dissipated - very unpleasant. The technology isn't perfect but I found that if I lay so the port was horizontal, they got in every time because could judge that the needle was vertical. The protocol so for the patient to lie normally with the port at an angle which is insane, so I made them do it my way and guess what .... In perfectly every time after.

Jacks150 profile image
Jacks150 in reply to

Sue this post I'd really old and I don't think spanishanna is still with us now. I think the putting of these posts at the top are not necessarily helpful as they are confusing people.

I saw one from Babs earlier this week which is upsetting as someone replied to it.

I think Gwynn has complained about this issue to HU.

I hope you are still celebrating your scan results. Such good news. I love hearing that one if us is doing well it boosts us all up even though you said you felt guilty. You shouldn't but I understand where you are coming from as when I do all the things I do and then read that other people are suffering through chemo I feel guilty.

Best wishes to you

Love Jackie xxxx

in reply to Jacks150

Yes Jackie.. I was upset about that too. I'm glad Gwyn has mentioned it. Love Tina x x

in reply to Jacks150

I know ...spotted the odd ages this morning after posting. Actually I didn't do to from the other posts link (which I agree is crap), but because of the previous post earlier today by copperpenny which popped up right at the top of the latest updates page. Another flaw in the HU model, methinks ...

Dyana profile image
Dyana in reply to

I agree that its really upsetting and I also have been upset lately by some of the links with older posts and people who are no longer with us !! I do hope that HU get it sorted !

in reply to Dyana

I just thought I would mention to the recent comments, that these are old posts, I think we should boycot the links to these older posts it is very distressing for them to turn up now I have written to HU (but I had no response) not only have we not heard from Spanishanna but Sud73 ( comment below) has died I remember writing a tribute aabout her... Also Frenchdeb has died too (her omnent is on this thread)

So what do you think ladies? Should we stop commenting on older posts? I am fed up of policing this and writing privately to people...love x G x

spanishanna profile image
spanishanna

Jackie, so sorry you experienced such a horrid time with your port and no I won't let that put me off. This is one reason I have opted to have it done privately, as my GP did say it is a bit barbaric having fitted on the State system. You can virtually insist on anything you want when the Insurance Co is paying, so I want putting out completely.

I remember before my debaulking I had to have a colonoscopy and a bronchoscopy and I asked if they could do them both at the same time. They said it was unusual to do a bronchoscopy under sedation, they did a colonoscopy under sedation. But they did it, I didn't know what what happening but assume it was looking up and down both ends at the same time lol

So again you have answered my question and have had both surgeons and radiologists fit them, so both my Onc and my GP are correct in their thinking. As my chemo is maintenance chemo and I am on it for the rest of whatever life I have left, I guess I shall take the plunge and go for the port.

Sue thanks for the hint on the power point.

At the moment I am suffering dreadful stomach problems and my Onc is at a loss to know what the problem is . There is no fluid in the stomach, the external examination seems fine, so is the chemo treatment of Cisplatin and Gemcitbane not working, or has almost 4 years non stop treatment taken a toll on my stomach. The problem is he won't allow an endoscopy because of the potential bleeding. So I have a scan booked for Fri morning with the results on Tues pm. I had a CA 125 taken today when I had my chemo and I go back to Malaga again next Wed when a decision will be taken if I continue with the same treatment or look for something else. The last scan in Dec showed minute shrinkage of tumours !!

Is anyone else finding they have problems with stomach cramping and vomiting after eating certain foods ?

I was disappointed to hear that they are not running trials anywhere in Spain with PARP inhibitors. My Onc. was in the forefront with using Avastin as he has been using the drug for at least 7 years now, but nothing with PARP inhibitors which is a shame as he thinks I could be an ideal candidate.

I am also saddened at the loss of yet another friend, a lovely Danish lady I knew from hospital. She sadly died on Monday, so since Dec I have lost one friend just before Xmas and another one in Jan and now Ellen in February. This blasted disease can we ever really zap it ?????

Love Anna xx

SuD73 profile image
SuD73

M

A quick update ... I asked my onc about a port but apparantly they don't do it at my hospital :( gutted

Sue

spanishanna profile image
spanishanna

H Ladies,

Thanks for all your input on the port. My Insurance Company have given the go ahead to get it fitted, so last night I went to see the consultant who will fit it. The only problem is as my bloods were so bad last week and the platelets very low, I had to have another blood test this morning to see if I will need a platelet transfusion before the port can be fitted.

The other downside is the rush as I restart on my Avastin next Wed and once I start on that it isn't possible to have any surgical intervention. You have to be off the drug for 6 weeks before anything can be done. So fingers crossed the platelets will be OK and we can get it fitted the end of this week. We have son and heir visiting for one week until next Tues so at least I will have a driver.

It will be done under proper theatre sterile conditions and under full sedation, the consultant commented it is more likely for infections to occur when it is fitted by a radiologist and not in the sterile surroundings of a theatre. I can't say I am looking forward to it, but it will be better than continuous problems finding veins and very bruised arms.

Love Anna x

spanishanna profile image
spanishanna

Hi M,

Now all the years I have been having chemo, I have never heard this one.

Downside is the platelets are even worse than last week so they are trying to arrange a platelet transfusion prior to fitting the port.

Right that's it, no work for me tomorrow. Son and hubby can look after me lol

Love Anna xx

spanishanna profile image
spanishanna

I had a phone call late this afternoon, that despite the platelets being low, I am still getting the port fitted. I have to be at hospital for 8.30 am to have a platelet transfusion. I will then go straight to theatre to get the port fitted.

Can anyone answer me this question. I have been told to use Emla cream when they access the port for bloods and chemo. When they take the blood do they leave the needle in for the chemo a few hours later or do they remove it and put a plaster over it?. If so surely more Emla cream would have to be used.

Sorry for asking such a silly question, but this is all new to me !!

Love Anna xx

copperpenny profile image
copperpenny

Hi,

I too have a power port in my chest. They waited a week before my first chemo. It works well for hydration and blood transfusions also. when I had surgery/ debunking in july this past summer I also got an IP port for my abdomen as there was a small part under my diaphragm he couldn't reach and thought the IP chemo would .( Sorry to say it didn't work and I start 2nd line next week for new spots,) I usually get numbed before chemo just because . a little prick then all I feel is pressure . My IP port turned (nothing to anchor to just nder my breast) Most times it took several tries to get the needle inserted correctly. only once did I get a bubble from incorrect insertion. I was sore for a month or so. I am suppose to have both flushed monthly. The IP chemo isn't really common in my area. but I did have the same nurse each time after the initial treatment.

It's been about 6 weeks since my last treatment.

After all that my take on it is get the port if possible. Good luck.

copperpenny profile image
copperpenny in reply to copperpenny

My nurses usually leave needle in for me and tape it well, even over night at times.

in reply to copperpenny

Just thought I'd mention even though your comment was posted two months ago (and it's a little late me telling you this) you are replying to a question that is two years old, the problem with replying to older posts the people might no longer be with us, so it can be upsetting for the relatives, it is best to check the date at the top righthand side ,and only reply to recent posts.

Best wishes x G x

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