Evening/morning/whatever time of day you happen to be reading this.
When I got my results saying Grade 3 and triple positive, I’m clearly going to have chemo and Herceptin, and during surgeries three different people have said I have “tiny veins”. The back of my hand’s a mess just from the cannula for the general anaesthetic (and the anaesthetic HURT going in!) so I’d quite like to try a portacath seeing as I’m in it for the long haul with a year’s Herceptin.
Can anyone share their experiences of insertion and use of a portacath please? Where do they put it (opposite side to affected side, I imagine, as I’m down for rads as well) and what about cuts and scarring?
Hi CC
I have a portacath - yes, put in on the opposite side. It sits above my left breast, and I have two scars - one just below it and one in the crease of my neck. The bottom one is always covered by clothes (I’m in my 50’s so not prone to wearing low cut vest tops!), the other one isn’t too noticeable, but I do sometimes cover it with a necklace or scarf.
I am just about to come to the end of a year of IV treatment, and couldn’t have done it without the port. I did have a few teething problems though - it developed a kink and didn’t work properly the first couple times. It makes treatment much easier as you have both arms free.
I have a portacath inserted to reduce infection risk because of all my dogs, didnt want them carrying a line off down the field thinking it was a rabbit. Had local anasetic chatted through it no problem, nice tidy neat scar. Never looked back since it was put in 3 months ago dont even remember its there until someone asks about it.
My surgeon will only do them under a general - he said when you are accessing arteries you really don’t want someone to cough! Others will do them under a local though - so you will have to ask your surgeon what their preference is.
I had mine inserted during a general and removed under local. Makes Chemo/blood draws so much easier. Had infection after in one of the stitches, this cleared up after antibiotics. On opposite side to mx with one scar slightly higher, the other covered by clothing. Good Luck. X
I have had a portacath for over 3 years now. I also have a surgeon who only does them under general anaesthetic. Mine is placed about one inch below my collarbone. The surgeon has a definite preference for left side (I have had treatment & surgery both sides) including mastectomies so the port bulges. Some surgeons will place the port in more fleshy area but they can be a bit unstable when being accessed (they wobble!). The nurses all love the positioning of mine cos it is sandwiched between a thin layer of flesh and bone under it. I have never had any problems and don’t even need numbing cream when it is accessed 'cos it doesn’t hurt. You can ask for those though if you find it painful. I have a very neat scar - just about half an inch across with a small hole below it. No scars in the neck area. I can’t say how it is when it comes to being removed cos have mine for the long term. It just makes each treatment so much better without the ‘hunt the vein’ nightmare every time.
This is all very positive stuff, thank you so much, ladies.
I’m going to have a chat with my BCN to see if we can get something moving while I’m waiting for the results from the second surgery. You never know, even if I have to have another surgery (either further re-excision or mastectomy) they could possibly arrange to do the portacath at the same time and reduce waiting time.
Did putting in the portacath delay chemo starting?
I am also Grade 3 and Her2, ER and PR Positive and had my port put in after the second chemo as my veins were too small. They did know this when they first saw me but I had to wait for an appointment at Mount Vernon to have my port fitted.
It was done under a local anesthetic which was great as no wooziness afterward and all I can say is I LOVE MY PORT.
I have free arms when having my Herceptin, the needle just goes into my skin a tiny bit it is not like having a horrid needle in your hand.
I have had no problems either with it in fact I’ll be sad to have it taken out as blood tests are a doddle with it.
Depending on your planned treatment, it may be worth asking about a power port rather than a straightforward portacath. I have one of these, and it allows high speed infusions, so that the contrast used in a CT scan can go through it (a standard portacath could not be used for this).
I’m another port lover - mine went in under local, with mild sedation. It has been used for blood tests, chemo, intravenous antibiotics, bisphosphonate, platelet and blood transfusions and CT contrast. Connecting to it is much less painful than having a cannula inserted, having both arms free makes such a difference, and the reduced stress over trying to find a vein is fabulous.
CM is now feeling very glum. I’ve had a conversation with my BCN who tells me that the hospital I’m under simply doesn’t DO portacath under the NHS.
There are some patients who do have one, but they have them done privately, and that can cost up to £2000!
So all my forward planning is pointless, as I don’t have a spare £20 let alone £2000. Darn shame, that could have helped to make the treatment a little easier to deal with. Grrrr.
Anybody know where I can get the number for easy-portacath, the budget supplier?
CM,
That’s shocking! Can you change hospitals?or is that not practical? I live in Sussex but have my treatment in London (I don’t have port at moment though,but it would be possible).Maybe you could ask your GP about possible alternative hospitals?
Good luck, love Julie x
Yes, I’m going to speak to my GP about it as I’m not happy about it at all, but I’m very early on in my investigations and that was from a conversation with the BCN and not with the onc. I won’t be seeing the onc until after I’ve been signed off by the surgeon and that won’t be until my results are back, so 9th Feb at the earliest but could be as late as 16th Feb. Or could be later than that too. Meanwhile, I think a conversation with my GP is on the cards.
You’d think the amount of money saved by installing a portacath (reduced time in clinics 23 times for herceptin and chemo, plus all the assorted blood tests that happen), even compared to PICC lines the reduction in cost would be measurable, would make it a more cost-effective solution than having to deal with all the problems of trying to get a cannula into small veins and extra meds to deal with problems caused. And that’s without even looking at the discomfort and distress to the poor patient (in this case, me!)
they only started doing them at our hospital about 2 years ago, would it be possible to go to another hospital to get one fitted, although i suppose that the nurses wouldnt be trained in the use of them then?
Good luck.
Oh, the medical staff are definitely trained in how to use a portacath, so I’m going to see if I can get my GP to pack me off somewhere else to have it inserted, even if the local hospital won’t do it. I’m shocked that they don’t, and I’ve very much set my mind to this as something that’ll make the treatment schedule just that tiny bit less distressing. I’d probably not kick up a fuss if it weren’t for Herceptin going on for a year, but I most certainly can’t afford a couple of grand, this bloody disease has removed my ability to earn any flipping money as I was unemployed when diagnosed and if I were an employer, I’d avoid me like the plague! Appt with GP (who is very nice) already booked for next Monday, the earliest appointment available. That should give me time to gather assorted paperwork and information on portacath. Anyone got any useful links to share?
