Port longevity

Hi Rosabella, if you keep it you need to go flush it once a month which comes with associated costs not to speak about time spent on appointments. Only trained nurse can draw blood from it so if you just need your CBC and want to do it through the port you have to schedule it with the trained nurse at a particular time when she is available. There is also a psychological component to it: by keeping it in and committing to monthly flushes etc you constantly remind yourself about high risk. That is coming from someone who is the same stage as you are and chose to take it out a couple of months after completion of chemo.

My MO initially suggested I keep it for two years but later recommended removing it sooner. This is a personal decision but in my experience, having it out and not having to flush it every month certainly was a milestone in my psychological recovery.

Best

I kept my port for 6 years, and had it flushed every six weeks. I did not mind having it or having it flushed. It was invisible because it was subclavian and very small and I had no incision line because it was placed during my BMX under the mastectomy flap.My MO initially requested it stay for two years after the end of Herceptin due to my recurrence risk. I kept it longer due to other reconstructive complications and resulting additional surgery. My MO did recommend that I finally remove it due to the potential risk of infection and clotting. I am not on tamoxifen, but it carries additional clot risk on its own and keeping a port in while taking it should be carefully considered.

As always - it really depends on diagnosis and personal choice. If you are a super difficult stick or have limited areas for access then having it remain probably makes sense for you.

I was encouraged to have mine removed right after Herceptin ended. I wasn't comfortable doing that so soon. I worried about recurrence and having it placed again. It's a Power Port so only has to be flushed every 90 days.

I rarely have my blood drawn and it sometimes bothers me in certain positions or certain clothes. Two MO's have encouraged me to remove it. If all looks good on last MRI then I will. I've had too many problems to keep something that could become a problem (clot, infection, breakage) and that isn't needed.

Leesa,

So sorry this happened to you. Although rare, this is a possible complication of leaving a port in. My port has been in for seven years, though, ironically, has never been used for chemo (long story). I am stage IV and imagine that I will have chemo at some point, so it’s become a bit of a talisman for me. I do use it for blood draws and scans and at my facility, it’s very easy to arrange for qualified staff to do this. In the end, the benefits outweigh the risks for me

Leesa,

Sepsis is a dreadful thing but I’m so glad you came through it. I had a very, very rare port complication as well. My lung was nicked during port placement (so not seen on post installation x-ray). Over the course of two weeks, it slowly deflated , until I had a complete pneumothorax. It became an emergency situation and having a chest tube inserted in the ER is something I wouldn’t wish on anyone. That was followed by one week in the hospital followed by a month at home with a portable chest tube. The chances of this happening? Somewhat less than 1%! However, since it is such an extremely rare complication, I am still a huge booster of ports. I just happened to be unlucky. My port has behaved well since then and I would definitely recommend them, but even low incidence complications do occur.

I was dx with TNBC Grade 3 in May. I had my port put in May 21 and started chemo the next day. I finished chemo at the end of August and had a mastectomy in October.The port worked great for 8 chemo treatments. The only problem I had was a blood clot developed at the end June. After the chemo ended, the nurses told me that the port would need to be flushed every 4 weeks. Today I asked my onc when the port could be removed. He said that I don't need the port anymore as the pathology report showed a CPR, and told me that he would make an appointment for me to have it removed right away. Since I got home, I'm been having second thoughts as TNBC often re-occurs within 2-3 years and I may need the port later on. I'd hate to have it removed only to have to put a new one in later. The nurses were surprised that he told me that I could have the port removed so soon. I'm thinking that it would be better to wait until after I complete radiation and he does any follow -up scans in January. I was wondering how long anyone who was dx with TNBC waited to have your port removed?

I have had my port for four years, and have no plans to remove it, for obvious reasons (stage iv), even though I have had no IV chemo for over 3 1/2 years. I have never been frightened of my port, and have not had problems with it. I am happy to be done with enduring vein hunts for blood draws and IV placements for scans. It did take me a while not to hate the looks of it, but now that I am used to it and the incision scar has faded, I hardly give it a thought.

Rosabella and NVB, I’m surprised that you were told you only need to flush the port every three months. I did a little web search and found that the web site for Bard Power Port says every four weeks, as does the port page of Memorial Sloan Kettering Cancer Center. At the cancer center I go to, in the lab where they access ports all day, they think six weeks is as long as I should go between flushes. Indeed the only two times my port has been a bit stubborn was when I went a bit longer than usual. I don’t know if personal biology comes into play, or if there are models that require flushing less often.

As far as infection risk, there is a long-time BCO member who is a nurse, who talked about proper procedure and advised patients to watch and require proper precautions. I will try to get a link. To begin with, both the nurse and the patient should wear a mask.

NVB, thank you for showing me that. I learned something. I had not heard of ports for which 90 days is the recommended interval for flushing. Rosabella, I'm glad things are working out well for you. As for me, I get monthly blood draws so that little sucker is pretty darn useful.

Diane500

After 2 years I asked the onco if the port could be removed, she set it up and the surgeon took it out in her office. Not as simple as I thought, after port has been in the body for a while it begins to grow in somewhat, and all that connective stuff has to be cleaned out.

I am also TNBC. For a while I was paranoid about recurrence, I am still paranoid but I was just tired of the port being there. I am rather thin with small breasts and it was always being rubbed by my seatbelt etc. My thinking was if I did have a recurrence it would be the least of my worries to put another one in, and I really don't want any more chemo anyway!

Best wishes to you, Mary

As a surgeon, I can say there is no "must be removed by" date, but you have to way the risks/benefits.

1. Flushes are to keep the catheter from clotting/closing up on the inside. You can still develop blood clot on the outside of the catheter, inside the vein because it is a foreign body and does "narrow" the vessel it is in somewhat and our bodies don't like things that we were not born with to be inside of us. A baby aspirin can help prevent clots, but of course can also cause bleeding and stomach ulcer issues.

2. As LeesaD unfortunately experienced, they can become infected. I will say that although her infection might have become infected from having the port accessed and flushed, it is not 100%. If it was MRSA, I'd say the chances were higher that's where it came from. Bacteria are constantly getting into our bodies and our immune system are constantly killing them off. Everytime you brush your teeth, showers of bacteria enter the blood stream. Any bacteria that gets in your blood stream has the ability to grab on to your port or catheter and grow. Our immune systems are not good at fighting infections attached to foreign bodies whether it is a port, an artificial knee, mesh used to repair a hernia, or a breast implant. If you choose to keep your port in for an extended period of time, be aware that any infection anywhere in your body can find it's way to your port and be sure to keep the port in mind if you do become seriously ill or become ill with something that doesn't seem to get better, or comes back repeatedly after finishing courses of antibiotics.

3. I had a patient who kept her port in for 10 years. Then she asked me to take it out. While a port that hasn't been in that long can be a piece of cake to take out in clinic, I did this one in the operating room with her sedated but not under general anesthesia. Her tissues had become sooooo adhered to the catheter, that I could not get the catheter to slide out of the vein the way it should. The catheter ended up breaking off and I had no easy way of retrieving it. I didn't want to leave it in, either, as the clot risk, infection risk, and risk that it would later break free and end up in her heart/lung. Luckily, one of my cardiology collegues was able to go in through a groin vein and use X-ray guidance to use a wire snare to grab the catheter and pull it out. Unexpected complication, an extra procedure and risk, overall good outcome, thank goodness. From that experience, I don't recommend keeping a port for 10 years.

OI had my port removed earlier this year after 7 years. Im Triple + and it was my umbrella (ie: how often does it rain when you Have your umbrella?) LOL. But after chemo, I used it every month for magnesium and potassium infusions. The 2nd year out it was almost every 6 werks. Third year, about every 3 months. Tgen I didnt need it, and the annethesiologist couldnt get a vein for my knee surgery, so used it then. So it came in handy.. but I realized I was ready to let go, when I was finally graduated to only seeing my onco once a year. I didnt want yo come back every 6 werks for flushing.

Cria,

Thank you for weighing in on ports. I've had my power port for 4 1/2 years and just recently developed a small clot next to the line. I am now on blood thinners.

I don't have much choice in whether to keep or not, I have pamidronate infusions every 8 weeks, & all my lab draws and scan tracers put through it. I don't have a good arm to use as I have bilateral breast cancer with many nodes removed on both sides.

My question is, because it's a Bard power port it is a saline flush only, but one of the radiologists suggested to me that it could be flushed with heparin. The thrombosis clinic didn't think this would make any difference but I wonder? Because of the blood thinners, no aspirin is allowed. Any thoughts on what other steps I can take? I desperately want off these blood thinning drugs, they are making me feel awful.

thanks!

GG27,

Sorry to hear about all the challenges that you are dealing with. I'm surprised the blood thinning drugs are making you feel bad. I haven't heard of that as a side effect before (not that it couldn't be!). Most people just have the easier bleeding and bruising. Given the number of different blood thinning drugs available now (coumadin/warfarin, eloquis, pradaxa, xarelto; all pains in the A$$ in my profession) there should be one that should work for you and not make you feel bad. Talk with your MO and anticoagulation clinic and see what they can do to work with you.

I am not an expert when it comes to managing all the levels of clot and clotting drugs. Number one, whether or not your port should be flushed with plain saline or heparinized saline depends more on the catheter than the port. I also have a bard power port (I think those are the only kind that I've put in in years as well). The tube coming from the port is the catheter part and some ports have a Groshong catheter. This type of catheter has valves in it and is not open at the end. this prevents it from getting blood clots inside the catheter as can happen when the end is open to the vein. As NotVeryBrave stated, because your clot was on the outside, heparin inside the catheter wouldn't prevent the clot that you developed on the outside.

since you already have a clot, standard procedure is to treat with the blood thinners for a certain length of time. (usually 3 months) After that, you may just be able to take an aspirin to prevent repeat clots.

Interestingly, the Bard website says that the groshong catheter is silicone and less likely to cause clots.

Good luck with finding something that works better for you. Sending positive vibes your way!