At our “post-surgery education class” chemo was discussed in a general way and I left with the impression thatI would have a port fitted to access my vein for treatments.
After left my oncologist yesterday (initial visit to establish plan) it struck me that she hadn’t mentioned anything about portal access.
I was going to call back to ask the nurse today, but I spoke with my friend who is a nurse at that cancer centre, and she said most people had treatment initially through their arm vein, and a port was usually not used at least to start with, if infusion was tolerated in the arm.
I’m a little perturbed about this, as I know my SIL in the UK had her port fitted before she started treatment, and I understood that the chemo was too harsh to use the smaller veins in the arm.
What are other people’s thoughts or experiences on this? Should I request a port? … maybe after my initial. I dont want to hold up the start of this thing, as oncologist seemed to want to get cracking next week. I have another visit with her on Monday - perhaps I should discuss it with her then. I do have a lot of sessions planned: 4xAC then 12 weekly doses of T plus or minus Herceptin… My first treatment is Wednesday.
When I was dx in November 2010 because I was to have Herceptin as well as AC and Tax I was advised to have a port fitted. I was a bit unsure but then had to have the first dose of AC through a vein and god was it difficult. It was actually painful the whole time going through, like a burning sensation. Accessing the vein was ok but the AC stuff really made it sore and the chemo nurse told me that not many people tolerate a whole course through the veins. By the time I was due my second treatment I had had a port fitted and it was completely different. No pain whatsoever and they can put it through quicker as it is going straight into the main vein in your chest.
I don’t know where in the world you are, am assuming from your post that you are not in the UK. I know in the UK it is not common to have a port under the NHS due to the cost. You can have one when having Herceptin because you have to have 18 infusions of the stuff and so will be having treatment for 12 months. I had my treatment privately hence why there wasn’t a problem.
I had mine removed under local anaesthetic a month after finishing Herceptin in February last year and have only a small scar which had faded a lot now.
It may be that you should discuss it when you next go to the hospital. My port was used the day after having it inserted so it maybe that you have the first session through a vein and then have a port inserted before your second.
I know a lot of ladies manage FEC chemo fine through veins but I was told this wasn’t quite as harsh as AC and I had AC every 2 weeks not three so my veins definitely would not have stood up to it.
Plus I didn’t want my arms to look like a junkie!!!
Hope all goes well for you.
Sam
hi morwenna if you are just having chemo it is more usual to have a picc line fitted-this is fitted into the arm and is done under a local and removed at the end of treatment.I do have a port but that is because i have monthly infusions of zometa,and is often fitted for people having a long course of herceptin.It is much easier than throught the veins,mine were all wrecked by chemo,and I also have bloods and ct scans via my port.
Hi Morwenna. I had a grochen line fitted after my 3rd chemo session- line that goes via chest wall. Picc line was tried but nurse couldnt get one in!!. I wish I had line fitted before chemo as veins became sore quite quickly- was offered one after 1st session but thought i could last it out . as with picc line. grochen line is put in under local anaes by anaethetist and is taken out after treatment is finished. - able to have bloods taken via it. Did need to have it flushed on weekly basis. Would advise anyone to have one if offered- lot easier.
frances.
I am in Canada, (Calgary). My sister in law is being treated privately in the UK. I really don’t think I want to have this treatment through an arm vein, especially if it painful as you say! I wish I had thought to ask about it yesterday, but I will discuss it on Monday. Either a port or a picc line, don’t care.
I don’t understand why we would be told it is routine in the class if that is not the case! We don’t pay for hospital treatment here, but my side effect drugs will be mostly covered by my insurance. There IS no option for private treatment. It’s a slightly different system in Alberta, and each province has their own autonomous healthcare system. There are quite a few things that DO cost, so health insurance is pretty well a requirement!
I too would recommend the port - I had first FEC without and my veins still havent recovered and that was in September. I am also private so the port was offered and I only had the first without as I didnt want to delay the start and the doctor who does the ports was on holiday!
I did all my chemo via veins - 3 x FEC, 3 x Tax. Wish I’d had a port, it trashed my veins on my ‘good’ arm, had axial clearence on t’other arm so it couldn’t be used. I’ve gone from woman with good veins to woman who faints when they try & take blood!!
I had portocath fitted before any chemo; its great. Having seen others in chemo unit having their arms poked and prodded looking for veins I think you should dedinitely ask to get one fitted.x
I feel quite annoyed that I didn’t have my port fitted until after my 3 FEC chemo, especially as I am having herceptin. It means I have vein damage that is worse than the cording from my surgery - FEC is the toughest on veins and I have small and tricky ones. I’m told it will eventially improve but could take months. That said, some people really don’t tolerate chemo well and maybe they want to wait to see if you are going to stick with the treatment before fitting the port as it has to be fitted and removed by a surgeon. I have my portacath fitted in my arm and it was done under a local anaesthetic. In theory they can also take blood from a portacath but in practice the people who take my blood end up doing it the conventional way because a lot of them aren’t trained / confident with using the port for this. It does make getting the drugs in the chemo ward a lot easier.
Hi
I found my portacath very painful after it was put in and really wished I’d not had it for about 6 weeks after the operation. My first chemo was done by vein as I’d only had the operation a week earlier and there was no problem for me. However, 2 months on, my portacath has stopped hurting and I know I’m better off with it as I have at least a year of Herceptin to go, which would have wrecked my veins. For 6 lots of chemo I would have thought the portacath is too much of a hassle for the short term benefit, especially as they wouldn’t use it for the first one.
I am on 6 Months of chemo; 4 x AC at three week intervals, then 12 treatments of Taxol at weekly intervals. That is 16 treatments, not 6.
My onc has agreed to me having a port fitted, but there is a wait for this, and may not be done in time for my next treatment. My first treatment via a vein in my wrist, was actually quite tolerable. The nurse instructed me to report any pain etc, and said she could always slow down the treatment. She did agree with the port idea too, and said that here the docs seldom mention it unless the patient asks, and it is often the nurses that encourage it.
Hi i had 6 x FEC in 2008 and veins in that arm are still not good, now having 12 weekly Taxol and have needed a hickman line put in dure to not getting bloods for pre chemo tests, i did suggest they may have problems!! this delayed the start of chemo slightly bit having just had my first Taxol the experience was much less painless and trouble free, just hooked me up and off it went, different story for the cold cap but never mind!!
Think you have to make sure you are aware of your choices and be firm , it is your body. I remenber the last few FEC’s being very painful , having to put arm in warm water and use wheat bags to raise the veins!! i got phlebitis swelling and pain in the veins, not nice
Good luck
Sarah66 x
I had a port fitted in Dec 2012, yes I found it uncomfortable at first, but as I will be having herceptin for a year and taxol weekly decided it would be worth it.
Had Fec x2 before port fitted and have a collapsed and painful vein.
I would say yes have a port if offered but found that the NHS did not have the correct equipment needed to use it while I was recently in hospital.
Good luck and best wishes
xx
Hi there
I am another advocate of having a port fitted and only wish that they were the norm before FEC takes it’s toll. I had mine fitted after my 3 FEC and before my 3 docetaxel and 18 herceptins and wish that I could have had one from the word go as I finished chemo in Sept 11 and herceptin in Sept 12 and my veins still are difficult to access. My port came out in October and it did make my regular infusions so much easier to administer, and it never caused me any pain or problems so ask for one - I’m sure that you will be fine. It is inserted under sedation and I didn’t feel a thing and it came out painlessly too.
Good luck!
Mazzalou x
I am having 6 x FEC and have had a PICC line from the start, as my veins are almost invisible.The installation was done , quite painlessly, by a nurse, and it is no bother whatsoever.It makes the administration of the chemo very easy indeed, and again, painiess.
I keep reading on here about women whose veins are burned up by the chemo, and endure a lot of pain and difficulty and endup with a PICC line or a Portacath in the end, anyway. Was disturbed to read above about how doctors don’t mention it, so women only find out about the potential problems when they suffer from them. This seems so wrong.
I was lucky, because they had big problems finding a vein even to put in the anaesthetic for my lumpectomy op, so they marked me down for a PICC line from the start of chemo.I’m going to research this a bit more, and write about the issue on my blog chemonights.blogspot.co.uk/
I can’t claim that it will make a difference, but The blog is being read by quite a lot of medics and medical academics now, so maybe raising the issue might put the idea in to at least one or 2 medical brains that they might be able to cut out a bit of suffering if they were a bit more proactive in this area.
One of the problems is cost, obviously, but another is that they often JUST DON’T THINK, and the poor patients don’t know in advance that chemo may fry their veins, unless they’ve done a hell of a lot of research post-diagnosis, which not many are in a fit state to do .
I know the doctors and nurses are doing their best within the constraints of very limited resources in terms both of money and time, but there are just so many areas in which patient suffer quite unnecessarily.
I wasn’t told by my onc about picc lines etc. She just said chemo would be administered via cannula in hand, so I will definitely bring this up when I go for appointment to have a look round chemo dept. Veins on my good hand are pretty prominent but I don’t want them ruining as I get chest infections and end up in hospital on two weeks iv anti-biotics. So want to keep them strong for that.
The trouble is that there are people who do manage to get through their chemo as well as their 18 doses of herceptin with their veins still in tact. Perhaps a pre-chemo ‘vein-assessment’ - if there is such a thing - might be a good idea as I am sure that they money spent on fitting ports and picc-lines would be saved in terms of the time spent playing ‘hunt-the-vein’!
I have already had 4 rounds of chemo through my veins as I was told I had good veins and it would be fine. The nurses recommended going I/V. On the thrid round they has real difficulty getting the cannula in and it took about 5 goes and left me very bruised. Last time was fine and went in OK. I only have 4 left - one nurse is really pushing me to get a port, what do you think? Is it worth it for 4 or shall I stick with the arm?
Difficult one - i would say that if you were on herceptin then yes - get a port. Just 4 more chemos - will they still do it and do you want to give it a go?