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CancerLynx - we prowl the net
December 4, 2000

Ports (Medi-ports)
Kathleen Allen, Elizabeth Brumage, Tina Bucklin, Sandy Caverly, Jeanne Coombs, Judy Kean-Lunsford, Sydney Long, Sharon Multhauf, June Nelson, Judy Nielsen, Suzanne Olsen, Karolen I. Paularena, Janet Rollar, Sandi Spivey, Stephanie Sugars

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. I think I would have given up long ago! Easier, easier, easier, in many many ways. Besides avoiding pain and stress, I also never have to worry about the drugs that are very 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?
Yep. On treatment days I go in a bit early, have the port accessed and the blood draw done, then hang out wherever I want for about an hour until I return for the chemo. When I was having Herceptin first they did the bloods, gave me the Herceptin, and the counts would be back before the chemo. However... I don't get blood draws from the port when I don't go to the hospital, largely because it takes someone with experience to do it, and I don't like the hassle. I know it's there as an option.

Can you get treatment at home? If so, can you set up and take down your own IV?
When I had my mobilization chemo for my stem cell procedure I developed febrile neutropenia. I was in the hospital for days and very anxious to go home and see my daughter before she left to spend most of the summer with her dad. I was afraid it would be my last time with her... and begged to go home. They told me they could give me a 50% chance of going home by putting me in a randomized study of antibiotic treatment -- home vs. hospital -- for febrile neutropenia. I was lucky enough to be 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, which is actually quite easy to do. I think that the port can be left accessed for a number of days, but I don't recall how many (3?). So that limits how often you need a professional. I do believe that one woman on this list gave herself Herceptin via her port (while traveling), but I don't think I could do that unless the incentive was LARGE.

Where is the port and how big is it? (Fashion still counts - are low necked or close fitting tops out?)
My port is on the left side (my MRM was on the right), about even with the fold of my underarm when my arm is down. I guess it's about the size of a quarter, but the part I can really feel is more like the size of a dime. It's not very visible, but I've been told it's deep, and also I am not bony. It doesn't show under close-fitting tops, but certainly does under/over a bathing suit. Also, there is a scar about an inch above the center of it which is about an inch and a half long. That shows, obviously. Where the port itself is now has a little darkish dimple, which is scar tissue from all the accessing. If that weren't there, I don't think anyone would know where it was.

Also, does it impede movement? Can you lie on your belly, swim or pick up a 4 year old?
Nah, no movement problems. But I'm careful not to hold things tightly against it because I want it to keep working trouble-free. And because some women had problems after car accidents, I have a foam cushion thing that loops around my shoulder harness that a friend made for me. Swim -- I've snorkled with it for hours on end. Lay on my belly -- not something I do much, but my breasts would keep me from noticing it, anyway.

Have you had trouble with clots or infections or are those just warnings of very rare occurrences?
I've had no problems. Once there was a problem getting a blood return, but it cleared up after they went ahead with the antibiotic treatment for a couple of minutes. Other than that, NO problem. I was good when I was in remission and had it flushed once a month.

Does it have to go on one side of the chest 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.

Questions you didn't ask, but which I think are important:
1) What is your hospital's policy about contrast injections?
At my hospital, unlike others I've seen women mention on the list, they don't allow the port for contrast unless there is NO choice. They have concern about the port holding onto chemicals, or about the port being damaged. So, if you're hoping to use it for CT scans, etc., you might want to ask first.

2) How much experience putting in ports like yours does the surgeon have?
I am convinced that there are good or experienced surgeons, and others. I wouldn't want an other. Frankly, a surgeon who is generally good, but has only done a few of the procedure s/he's performing on me, is NOT a surgeon I want...

3) For blood draws where chemo will not be involved, do they have the staff, and are they willing, to use your port?
I get my nonchemo blood draws somewhere other than the hospital, so this hasn't arisen for me. And I'm so well-known at the infusion room (hmmmm, wonder why THAT is :-) that I am sure they would be willing to access me for routine blood if I asked. But I'd make sure first if I was hoping to avoid arm sticks.

4) Who will perform routine flushes if I'm not on chemo?
Actually, I had my routine flushes done at the inpatient unit of the university where I work. But it was a learning experience for all, because I became (voluntarily, of course) a teaching subject on "how to flush a port with proper sanitary procedures."

5) What is the expected recovery period from the surgery? How soon can I shower?
This is a routine question, but I add it partly because of Alexandra's website and partly because I think that even as experienced patients we deserve to know the answers to quality of life questions BEFORE making decisions.

6) Are the staff willing to be cooperative about the use of Emla or some other locally anesthetizing substance?
I always get my sticks without anything, because it's not that bad. But I know that my lack of unendurable pain is not universal. So, I'd want to know ahead of time if the staff would be willing to help and to facilitate the use of one of the deadening procedures/drugs that can make it easier in case things are unacceptably uncomfortable.
Whoa. Said enough, didn't I?!?
- Karolen Paularena

I have a port in my arm (opposite side of lumpectomy). I initially had a port in my chest. It showed under everything I wore and frankly I didn't like to look at it when I looked in the mirror. There are several women in my support group who have them in their arms and a few in our club. I believe I was the first. I love the port in the arm and my chemo nurse does too. I think it is best to have a cardio-vascular surgeon implant the ports. I also think there is less sensitivity in the arm so that the needle sticks are hardly felt.
June Nelson

My portacath was always highly positional and could only be used when I was reclining flat on my back. Apparently it was getting pinched under my collarbone because last week it broke off and the floating piece was lodged in my heart. It was a simple procedure to remove it from there. I just wanted everyone to know that if they feel a fluttery feeling in their heart, they should not ignore it as just another one of that long list of side-effects. I was lucky that I just had a routine visit to my oncologist where they could not get the port to work.
Janet Rollar

I'll add a little about my experience with a port, since some topics that were important to me haven't been discussed. I've had my port almost three years, and I have been very pleased with it, despite an infection (read on). I had received adjuvant chemo (1987) and several rounds of Taxol for mets without the port, but when I changed to weekly Taxol, I decided that I didn't want to do that without a port, and my doctor heartily agreed. During later infusions of Adriamycin and Navelbine (both are hard on veins), I was glad I could avoid some of the problems.

Choosing Your Surgeon:
One suggestion I received from a friend: When deciding which surgeon to have implant the port, I asked the chemo nurses which doctor did the best job--in other words, whose ports "behaved" the best. Apparently, there really was a difference. So, I held out for the recommended surgeon (head of the department). BUT--when I was being prepped for the procedure, my chosen surgeon introduced me to a resident who he said would be "assisting" with the procedure. At that point, a red flag went up in my mind, and I made it clear to him and to the nurse and anesthetist standing nearby that I would not consent to the surgery unless the procedure was performed by the experienced surgeon. No offense, I said, but this was very important to me. They agreed, and I got confirmation from the nurse afterward that the right doctor did the job. I realize that someone has to be the first subject, or a resident will never learn to do the job, but I didn't want to be that someone.

Preventing Clotting:
About a year after my port was put in, I learned that the head nurse had read of research that showed that patients with ports were less inclined to develop blood clots if they took a low maintenance dose of Coumadin (blood thinner). She brought this to the attention of the oncologists, and they decided to prescribe it for their port patients. (I asked the head nurse what kind of risk was involved, and she said that of 80 patients in their clinic with ports, three had developed clots.) Not all clinics follow this practice, but if you have any family history of clotting, it would probably be a good idea to ask your doctor.

I was NOT eager to add Coumadin to my already long list of drugs, so I balked. Here's why: in addition to the narcotic pain medicines that I take for bone mets, I also take aspirin regularly for arthritis pain (which the other drugs don't control as well). Since the aspirin serves much the same blood-thinning purpose, my doctor agreed that I could skip the Coumadin. I have an Aredia infusion every three weeks, after which the port is flushed with Heparin, so I feel I am doing enough to forestall the risk of clotting.

Avoiding--Or Recognizing--Skin Infections:
One little quirk developed from having such free-flowing blood. Often after the nurse removed the port needle and applied a bandage, I would find several hours later that the bandage was still wet with blood. And then (perhaps because of the drugs mixed with the leaking blood?) I had to deal with an annoying little rash in the skin over the port.

Last January, three days after an Aredia infusion, I developed a staph infection in the skin over my port and was hospitalized on heavy-duty antibiotics for four days--not fun (they couldn't use my port!) and more than a little scary (because of the risk of the infection having a direct line to my heart). Thank God the infection stayed on the surface, but since then, I've insisted that after removing the needle, the nurses again swab the area well with antiseptic. Also, because of the problem of the rash, I now hold a thick gauze pad over the port and apply pressure for several minutes until it stops bleeding, before the nurse applies the bandage. So far, no more rashes and no more infections.

Most people I've known with ports have not had problems with them, but I have known three women who developed infections. You should always be on the alert for signs of infection--pain, swelling, redness, warmth--in the skin over your port and report any problem right away.
Good luck--and may you have a very uneventful experience with your port.
Sharon Multhauf

Thanks to everyone who responded to my questions about port-a-caths. I had a good composite picture of life with port-a-caths before going to talk with the oncologist and nurses with last Friday. I found out a couple of new things from the folks I saw.

Location of ports: usually about 1-2" below clavicle but also at sternum or about nipple location. The arm port is usually on the forearm, is a different size and shape and called redi-port (check this name). The nurses took one look at me and said that a port would show no matter where it is 'cause I'm skinny.

Accessing ports: All there agreed that ports can be used at home for chemo and other purposes. Non-medical folks can learn to do it with a little training. Needles are hard to get and expensive. Patients are given Coumadin to prevent clots. If a clot does occur it can usually be flushed from the port side rather than requiring a flush through a leg vein. They give sub-q lidocane before putting in the needle, but emla lotion can be applied one hour before stick. For many folks the skin numbs after a few weeks so no extra numbing is necessary.

Infections: Most infections seem to come from recently installed ports, another good reason to find a good surgeon. My impression is they are less worried about infections than cancer.
The nurses say, "nurses love them and wish all patients would get them."
Love, Stephanie Sugars

I've had my port two years (installed 12/98), a single lumen Bard brand.

The surgery is not pleasant but was handled as an outpatient under local anesthesia. I was asked to hold my head very far to one side for over an hour which was very uncomfortable. Was asked to sign a waiver acknowledging that the surgery could kill me if the doctor damaged the jugular vein, heart or lung during surgery. This was a bit scary. Everything went fine that day and I was off work for an additional two days to recover. I woke up with a gauze patch over the port as well as one at my neck where the line travels up over my collar bone then inside to the vena cava near the heart.

The OR nurse kept a needle in the port site and taped it down. The chemo nurse used that needle three days later when I started my treatment. A small, blunt needle is used to access the port, not a standard needle like those used for chemo or blood draws.

(Note from Karolen - In reality, the needle is shaped like this |/ (but pointier :-), so that it slips in properly 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. It's that slice which can heal; the hole cannot.)

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. A friend of mine had hers placed under her breast and was surprised to find it there after surgery. It was inconvenient for chemo nurses to access it during treatment and required her to remove her bra. She did not like the placement.

My port is on the right, the same side I had radiation three years ago. The doctor said it would not matter because of the time between radiation and port installation. There have no issues using this location. It's about four inches below my collar bone.

Some non-chemo nurses (in the local nurse clinic) have had a difficult time accessing my port for blood draws or for monthly heprin flushing. I've had as many as three "sticks" until it worked (not very comfortable). Experienced chemo and OR nurses have had no problems accessing the port.

I'm glad I've had the port installed. I was able to tolerate chemo infusions much more than in 1995. At that time, my veins hardened after every infusion and I also had problems with "blown" veins that leaked out into very large bruised areas just beneath the skin.

Every so often, I feel pressure in the port area or the line. It's almost like the port is announcing its presence. There is no pain and the feeling quickly goes away.
Sandi Spivey

I have a port on my left side, as the mastectomy was on the right. It was very tender at first, but I've learned to deal with it. Yes, you can have blood drawn from it, as well as have the infusions. However, some techs won't use it to draw blood, as there is more sterility required. Nice to know they don't care if your arm or hand is sterile!

The port is about the size of a quarter. If you are very small breasted, like I am, it does stick out a bit under the skin. You can still wear low cut tops, as it is over to the side quite a bit. Some types of bras may rub, so be sure to find some that either cover the port completely or don't touch it all.

I would highly doubt you could access it yourself for IV's. Your doctor wouldn't allow you to, in any case! Yes, you can swim. You can lie on your stomach on a pillow, but probably not on a hard surface. You can pick up a four year old, but best to keep him/her on the opposite side of the port while carrying.

You should get it flushed every month or so if you are not using it regularly for infusions. I am done with chemo for the time being, but opted to keep it, as it really saves your veins! Also, Adriamycin and some other drugs are pretty toxic and can burn the vein if infused improperly.
To sum it all up, I am very happy I have my port!
Best, Tina Bucklin

What do you think of your port? Has it made life easier or more difficult?
It has made my life much easier; the nurses could no longer access my veins for chemo, and the lab could only access a vein after making a pin cushion out of me and leaving me with a huge bruise on my arm.

Do you use them for both infusions and blood draws?
I am fortunate that I can use mine for both infusions and blood draws; I also use it when I have CT and bone scans.

Can you get treatment at home? If so, can you set up and take down your own IV?
I don't know about getting treatment at home; my clinic insists 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 is in place.

Where is the port and how big is it?
My port is implanted in my right chest, it protrudes a little, but not much. Don't worry about tight or low cut outfits--if you can wear them fine. If someone with you has a problem with your port bump showing that's their problem, not yours.

Also, does it impede movement? Can you lie on your belly, swim or pick up a 4 year old?
No problelms in any of these areas.

Have you had trouble with clots or infections or are those just warnings of very rare occurrences?
No trouble for me here either.

Does it have to go on one side of the chest or the other?
I had radiation to the left side which damaged the skin, so the port was put in the right side. It can go on either side.
Good luck, Judy Nielsen

I am responding to your questions on port-o-caths.
I have had my port in for 3 years and I can only say I love my port. I had so many problems and discomfort before receiving it and would not hesitate to encourage you have one. The discomfort and distress before was pretty unbearable as I had no veins when they tried to draw blood and also was subject to many blood transfusions which were very difficult and painful for me. At one point they even drew blood from my foot. That would never happen again and I can not describe how painful that was.

I do get my port flushed and blood draws done at home from the Home Care nurses. Apparently there are only certain nurses that can do this as the needle is quite different from the normal and they have to be specially trained to do this work. I am on no treatment at all now and do not know if you can have chemo infused at home although there are some cylinder types that may be need to infuse over some days and I always had to go in to the clinic to have it inserted and removed.

My port is on my left shoulder blade. The opposite side of my surgery. It protrudes and looks like a 1 x 1 inch button. The medical people love it as it is easily accessible and cooperates nicely It is not a very pretty thing but I can wear v necks. Some necklines I would not consider and a bathing suit reveals it plainly. It doesn't bother me anymore as I am quite used to it now. Truthfully I have to say I am so glad that I have it now and it has made my life through the treatment periods very much easier. Never have I had any infections or problems with it and your movements are not inhibited too much. At first before you get used to it, I think you are always aware of it and after a while it is just part of you.

Boy, once I get started, I just go on and on..... Sorry about that. I just want to let you know my own experience and hope it helps a little.
Love, Sandy Caverly

Ditto what everyone else has said about ports. I've had mine for almost a year and it has saved me endless needle pokes as most tech have to try at least twice and "blow" one vein in the process. Now that I have lymphodema, one arm is completely off limits to needles, which makes the port even more valuable.

In my experience, only trained nurses can access them. When I get a scan, they have to send for a nurse to access the port.
Sydney Long

I have a medi-port and it is so much better than using the veins! I am skinny and it sticks out from my skin a bit, but I don't wear anything low enough for it to show. I can swim with it and it is right under my swimsuit.

Yes, they do blood draws and give tx through it. I had one before that never gave blood, so that was a bummer since that is one reason I got it. That one got a small leak in it, had to be replaced, and the new one works like a charm.

I put EMLA cream on the area an hour or so before they access it, so the stick rarely hurts.
Good luck with what you decide!
Love, Elizabeth Brumage

I have had my portacath for 4.5 years. It is used to give and receive. The surgeon has some flexibility in placement (can go either side). Mine pokes out a little, but nothing I can't cover up. Just no strapless tops. They can also place them in the upper arm, which I would seriously consider if I needed it replaced. You can request a smaller one, there are pediatric sized ports that may work for you. I am very happy to have one, and can't imagine going through the sticks all the time. Then again, I have very cruddy veins at this point and go for weekly herceptin. When I go for ct scans, they have to send in a doctor with an ultrasound. It's good you're asking so many questions--ask to look at the various ports available. At my onc's they have sample ports with fake skin to place over them so you will have a good idea how it will actually feel.
Good luck, Judy Kean-Lunsford

The only point I would add is that a port can be keep for years Mine was put in 11/93 and used for 5 months. I had it flushed every 6 weeks until a needed it for Aredia. I have been using it again since 10/96.
Suzanne Olsen

I went to a different infusion room yesterday - still part of my onc's office, but located closer to home. Just went for herceptin. And I learned something.

You know, I'm getting tired of being stuck with needles. So when I had a port inserted, I asked my onc for tube of Emla cream which deadens the skin so you don't feel the puncture. But you have to put it on an hour in advance and cover it up and I forget and sometimes it doesn't work well and.....

The nurse in the new infusion room said, "Don't worry, I'll just spray you with some Ethyl Chloride and you won't feel a thing!" And I didn't. One little spray and it worked instantaneously. When I asked her why the other infusion room didn't use it, she cited the expense. Apparently I can get a prescription for it and bring it along with me.

It's called ethyl chloride - it feels cold on the skin for a few seconds and you don't feel the stick. My pharm charges $15 for a supply that lasts months even when used weekly. By rx only. I like it better than emla because the the advance time required for the cream, the bandaging to keep it moist, unpredictability, etc.

Has anybody else used this stuff? It was a wonderful solution to an annoying problem.
Sandra Rubin

From the onc nurse:
Most of the brands of venous access devices have plastic models in their lines. Most have regular and small sizes.

Plastic allows for no interference with MRI, and is a good choice. They are also lighter, although the metal ones which are titanium are not much heavier...

Have your onc check with your hospital's purchasing dept. and see just what brand they regularly purchase, and have the agent look at the catalog for the types that brand offers. You will get the best price this way...your hopsital probably belongs to a form of buying club where they have contracts with certain manufacturers for most medical supplies...buying in quantity gives the best price, even in medical supplies.

If that doesn't work, they can buy a single item from any source, for a higher price.

Now, re: size. the small ones are lovely and low-profile but (listen up good, here!) if you are overweight, and especially if you carry weight on your chest where the reservoir will be implanted, the small ones can be too deep in tissue for easy access! I know this! I been there! We no longer put low profile ports in people unless they are really skinny...access is just too traumatic for patient and nurse both!

Give this some serious thought.
Kathleen Allen

Apply Emla cream (available by prescription) one hour before infusion to numb port area.

It is possible to self infuse through one's port if the length of the infusion is as short as half an hour. This frees one from office visits if one is traveling.

Port makers have videos available of the surgical process that they make available to patients and to cancer centers.

I decided to simplify traveling and learn how to do it myself. Having a chest port makes it easier than giving myself an i.v. but I do have to use a mirror to see it. Just back from three weeks in Alaska and three successful self-infusions!!!--one from a treelimb in the Yucon!!
Anything's possible. Love, Jeanne Coombs

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