September 23, 2002
About Ports: A Little Q & A with the Masked Author
What do you think of your port? Has it made life easier or more difficult?
I LOVE my port. I can't imagine how I could have gone through all these years of chemo without it. Besides avoiding pain and stress, I never have to worry about drugs that are toxic to the veins, which is a great reduction in stress after my adjuvant chemo.
Do you use them for both infusions and blood draws?
Yes, but I have to wait for about an hour between the two. When I was having Herceptin, they did the bloods, then gave me the drug, and the counts would be back before the chemo... I don't get blood draws from the port except at the hospital, because it takes someone with experience to do it.
How do you choose a port?
Ask your oncologist or the chemo nurse or fellow patients about types. Ports come in different sizes. Beware of the too small port that is difficult to access. Plastic ports allow for no MRI interference. Remember ports can be kept for years
Any tips on choosing a surgeon?
Some porters think it is best to have a cardio-vascular surgeon do the work. You could certainly do worse than to ask the chemo nurses which doctor does the best work -- whose ports behave the best.
Beware the dreaded resident who assists in the surgery. You do not have to conselt to a surgery that is not performed by an experienced surgeon. I realize, someone has to be the first, or students will never learn to do surgery... but...
Surgery is rarely pleasant, but can be handled as an out-patient under local anaesthesia. Still, holding your head very far to one side for over an hour can be uncomfortable; and you may be asked to sign a waiver acknowledging that the surgery could kill you if the doctor damages the jugular vein, heart or lung during the procedure... Scary. But when it's all over, you'll probably wake up with a gauze patch over the port as well as one on your neck, where a new line travels up over the collar bone, toward the vena cava...
Positioning can make a lot of difference. One woman's portacath could only be used when reclining flat on her back, because it got pinched under the collarbone. Different doctors place the port in different places. If you want to specify placement, be sure to discuss it with your doctor ahead of time. You do not want your port underneath your bra strap. You want a port that is easily accessible and cooperates nicely
What is the expected recovery period from the surgery?
How soon can I shower? Even as experienced patients we deserve to know the answers to quality of life questions Before making decisions.
Can you get treatment at home? Can you set up and take down your own IV?
When I had mobilization chemo for my stem cell procedure, I developed febrile neutropenia. I was in the hospital for days, anxious to go home and see my daughter, afraid it would be my last time with her... I was offered a 50% chance of going home if I entered a randomized study of antibiotic treatment -- home vs. hospital -- for febrile neutropenia. So I was sent home, with more antibiotics than anyone we've had in the study before. The port was left accessed and I did the rest myself -- actually, quite easily. I think the port can be left accessed for days, but I don't recall how many -- three, maybe?
Some clinics may insist that a doctor be in the vicinity when chemo is being given. Having seen a few adverse reactions to chemo in other patients, I know why this rule might seem appealing... but, generally, non-medical folks can learn to access ports, with a little training. A small blunt needle is used to access the port, not a standard needle like those used for chemo or blood draws. It slips in through the self-healing membrane at the top of the reservoir. It leaves a little slice behind it when it comes out, rather than a hole, as a regular needle would (that slice will heal).
Does a chest port actually have to go on one side or the other?
It can go on either side. I was told that they preferred my left, since the mastectomy was on the right, but if I needed to get another one for some reason, it would be placed on the right -- and they'd just have to be really careful.
What about appearances? Are low-necked or close-fitting tops out?
My chest port is about even with the fold of my underarm when my arm is down. The part I can really feel is the size of a dime, not very visible (I've been told it's deep; and also, I am not bony). It doesn't show under close-fitting tops; but does, under/over a bathing suit. Also, there is a scar, about an inch above the center of it, an inch and a half long. The port itself is now just a little darkish dimple of scar tissue. An arm port is usually on the forearm, is a different size and shape.
Does it impede movement? Can you lie on your belly, swim, pick up a 4 year old?
Swim? I've snorkled with it for hours on end. Lay on my belly is not something I do much, but that's not because of the port. I'm careful not to hold things too tightly against it, because I want it to keep working trouble-free. Some women had problems after car accidents, so I have a foam cushion that loops around my shoulder harness. Arm porters bowl port side
Infections, and blood clotting, can be trouble. How do you prevent them?
I've had no real problems, other than once, in getting a blood return; and that was cleared up with an antibiotic treatment. The whole affair lasted just minutes. But then, I was good when I was in remission, and had my port flushed once a month.
A lot of patients are given Coumadin (a blood thinner) to prevent clots. If one does occur, it can usually be flushed from the port side, rather than through a leg or other vein. Interestingly, there is good evidence that patients with ports are less inclined to develop blood clots if they take a regular maintenance dose of Coumadin. In a sample of 80 patients with ports, only three developed clots.
If you have any family history of trouble with clotting, it would probably be a better idea to ask your doctor. In my case, I find aspirin to be just as good a blood-thinner. An Aredia infusion every three weeks, after which the port is flushed with Heparin, should be enough -- ordinarily -- to forestall the risk of clotting.
If you have very free-flowing blood, you may end up with bandages that stay wet with blood for hours. All you need to do, usually, is hold a thick gauze pad over the port, and apply pressure for several minutes until it stops bleeding; then let the nurse apply the bandage.
Sometimes, annoying little rashes form on the skin over the port. Take it from me, you don't want a staph infection -- which is not fun. It means heavy-duty antibiotics for days and days, while your port can't be used. Always insist that, after removing the needle, the nurse swabs the area well with antiseptic.
If you get any infection -- pain, swelling, redness, warmth -- report it Immediately, or even sooner. What you want is a very uneventful experience with your port.
What about contrast injections?
At my hospital, unlike others I've heard of, they don't allow the port for contrast unless they have NO choice. The concern is that the port may hold onto chemicals, or otherwise be damaged. They might not want to use it for CT scans, or whatever. There's no hard-and-fast rule. Ask whoever treats you. Plastic ports allow for no MRI interference.
For blood draws where chemo will not be involved, are they willing to use your port?
I don't get nonchemo blood draws at my hospital, but I'm so well-known at the infusion room, I'm sure they'd be willing to access me for routine blood, if I asked. But if I was hoping to avoid arm sticks, I'd talk to the head nurse first.
Who performs routine flushes if you're not on chemo?
Mine were done at the in-patient unit of the university where I worked -- a learning experience for all. I became (voluntarily, of course) a teaching subject on proper sanitary procedures for flushing a port.
Will the staff use Emla, or spray you with some Ethyl Chloride and you won't feel a thing, or some other local anesthetic?
I always get my sticks without anything, but then, my superhuman indifference to pain is widely famed... Indeed, for many, the skin numbs after a few weeks, and no extra numbing in necessary. Still, I like to know ahead of time if the staff is willing to make it easier, in case I re-sensitize.
One woman's portacath broke off -- and a floating piece of it lodged in her heart. It was a simple procedure to remove it; but if you feel a fluttery feeling in your heart, Do Not ignore it.
Thanks to the members of Club-Mets-BC www.acor.org/club-mets-bc.html for being the The Masked Author