Port question

[BonnieR]

Hi everybody. I have seen the surgeon this morning at the recommendation of the treatment center and oncologist. They want me to have a port installed to ease the remainder of my treatments, blood draws, etc. I will be receiving Herceptin for several more months. And of course, routine lab work etc.. I would like to know your experience with ports. Best location, etc..... There is a bit of a question where to install mine since I had a bilateral masectomy. But the non-malignant side is the one that is getting neuropathy and is already compromised. So we are thinking of putting the port in the side that had the cancer. But that should not really matter since both sides had a few nodes removed....and the cancer side is the one we have been using for all my infusions, etc, because it has less neuropathy, better range of motion etc... I hope I am making sense. Anyway, I am going back to see the surgeon this afternoon to make the decisions and any input from you ASAP would be greatly appreciated.

Hi Bonnie,

Have you been having problems with your veins? I ask, because I did herceptin and every third week blood draws and MUGA injections without a port. It was getting a bit more difficult at the end and the very last one took a few tries but I managed without a port. The veins in my hand seemed to be the ones that worked best.

Luckily we never had to use my right arm (lumpectomy side). I know some other women on this site also did their year of herceptin without a port.

[BonnieR]

Well, ONE of the nurses has the most trouble. And turns me over to someone else after her first two attempts fail. I brought that issue up today. Saying I don't want a port because she has problems. Just give me a different nurse! The others are able to do it. But in fairness, I DO have small veins and can see that I might become a challenge. I am considering having the regular blood draw for my blood count next week (prior to Procrit) to see how it goes. But the oncology nurse today said that a blood draw is not the same as threading the needle into the vein for an infusion (Herceptin). And the nurse said "we are asking you to get a port" but of course they can't MAKE me do it. But I dont want to compromise or ruin my veins for my future life after chemo. So maybe the port is the answer. Cripes, it is so hard to know what to do.

[Andrea Barnett Budin]

I HAVE HARD VEINS. Very thin, they say. Collapse, roll over and/or blow out. Many stabs and pain. So I got the port. Easy out patient surg. Twilight sleep. Get up, remember nothing, can walk right out. Need a wk to heal before tx.

Tx messes w/your veins. I prefer this method. Easy access. Saline before, saline after + heploc. Best thing I ever did. Great for bld draws, if done at Cancer Center. I wouldn't let nurses who were not familiar w/ports use it in hosp. Good luck. Let us know how you fare.

Oh, mind is in the bra line. Pp tell me inner arm is not good, nor under breast. Prone to clot. So I hear. I have had no prob, thank God.

Andi

[KellyA]

Hi there,

I LOVE my port (ugh, that sounds sick!!). But I do. My friend was treated for ovarian cancer a few years ago and told me about it. I would have never known to ask for it- my surgeon didn't tell me about it. It is called a PASS port and it is located in the upper inside area of my arm. It is completely out of the way and I forget that I even have it. It works exactly like a regular port, except it is a hair smaller and just located in a different spot. I can wear lower cut tops, sundresses, and swimsuits and it is not visible. I did have my nodes out on one side so they had to use my other arm. They just take my BP and draw blood in the port arm, but below the port. Works great. A radiologist actually had to insert it, with a local, and the procedure was VERY EASY. I think I offended my surgeon (who would have put in the regular port), but oh well.

P.S.- I did specifically ask about the clotting issue and was told that the incidence is only very slightly higher than the regular port and that my radiologist had never seen a problem with that.

Love, Kelly

[Jeanette]

I also love my port, but Oh joy I am getting it removed in two weeks. Will onle be on arimidex. Thankyou Lord, jeanette

Bonnie--some times I think you're the West Coast Grace, or I'm the East Coast Bonnie. That's exactly the problem I had when I first started. I loved my chemo nurse but she couldn't get a needle into my veins for twelve months, and she did initially recommend a port. She never had a successful try and always got someone else to start the infusion. I was afraid I had intimidated her and asked her a few times to please try again, but she refused, wisely perhaps.

Getting a port is a tough decision and I wasn't trying to make it tougher for you. I know that should I ever need chemo again (and maybe even herceptin), I would get a port as I did lose my veins at the end. Last infusion took seven tries and I was black and blue everywhere. But even there, it was because the first nurse (of three) refused to use the vein that I recommended. And, of course, that was the one that worked in the end.

Listen to the women who have had ports. They know best.

One more thing! It's imperative that you drink lots and lots of water before your infusion. That was one of my big problems. I hate water--hard to believe, and I have to force myself to drink it. I believe I was the cause of much of the problem.

[BonnieR]

Someone finally mentioned to me to do that. I was not instructed specifically at first. So I made a point to drink alot of water the morning of chemo. Only to be told that I SHOULD have started drinking the night before. Well, I am not a mind reader. Fortunatly, I DO drink a fair amount of water regularly anyhow, living in the desert!!!

[rinaina]

My port was placed in my left forearm on the underside and I had absolutely no problems with it. I had it for a full year and a half. Not sure why some get them in the arm and others in chest. Good luck with your new port

[Jean]

Bonnie,
I did not have a port and did have my entire chemo and herceptin via the viens. Have lousy small think viens also. Must drink plenty of fluids the
day piror and the nurse at my center would take a towel which was wrapped in clear wrap, heat it up in the micro and keep this on my vien
to help swell the area up. It always worked. Like Grace we found the viens in the hand worked best each and every time. The nurses are
not fond of this...but find the nurse who feels comfortable with it.

Wishing you the best in your decision.
Jean

[new shoes]

Hi Bonnie. Are you going to the infusion center in Rancho Mirage? That's where I go and they have bugged me from the beginning to get a port. I have resisted for several reasons. First, surgery to put it in and then take it out. I have already had 5 surgeries within the last year and I think that is enough. Secondly, LabCore cannot do blood draws thru a port. So even with a port they would have to do my triweekly blood work thru a vein. Finally, they told me I would have to go in every 6 weeks to have the port flushed. These flushes would have to be timed in between my Herceptin treatments and my blood work. As I am still working full time that is time I can better use elsewhere.

As a "desert rat", I too drink a lot of water, but I almost over hydrate the night before a treatment. So far I have only had 2 "blow outs" and that has been getting infusions for the last year.

I am curious as to who your onc is and the surgeon's name. Who knows we might have already met in person!

Best wishes from Cathedral City!

[Mary Anne in TX]

I'm a Very Yes Voter for Ports! I too, love mine!!!!
ma

[Andrea Barnett Budin]

Hi y'all. Just wanted to share my experience. I resisted a port, having had 4th stage dx, mastec and tram flap reconstruction. No more surgery was all I could think. One tx w/Adriamycin and I was convinced I had to do it. Like everything, the anticipation was way worse than the actuality. MY PORT IS THE BEST THING I EVER DID!

The out patient surgery to install a port is not a big deal. No pain. Out and good to go.

As far as I know the only time you have to have your port *flushed* is after you've finished chemo. I chose to keep my port, cause the nurses all encouraged me to do so. So then, I had to go once a mnth for a 5 min flush.

I get my bld drawn and receive H through my port.

When I decided after a yr to remove my port and hope for never having a recurrence, it was done in my surgeon's office. I looked the other way. It was done. When he asked me if I was all right, I told him I'd rather wait in the waiting room... But it was nothing. Out quickly and I don't remember; it was unmemorable. Plain easy.

CONFESSION: My Imaging Center has been using my port for contrast, which I KNOW many will not do. I have been doing this since '98 on a reg basis and never had a problem. Plenty of saline before and after and then heploc to seal it. Circle bandaid, good to go.

I drink 10-12 8 oz glasses of bottled water a day. Every single day. It keeps you hydrated, gives you good skin, and flushes out any toxins. I drink it tepid. 11 gulps = 1 8 oz glass. By 11AM I have swallowed 7 glasses of water.

When I found my liver mets I immediately made an appt w/my surgeon for another port, before starting chemo. I knew it was the best way to go. I'm a big fan...

So that's my experience. I hope yours brings you nothing but serenity. Such easy access. I never use numbing spray or anything as I have been told it is an opportunity for infection to get in and it degrades the skin around the port. I've had this one since '98.

When having dental work -- with a port -- you must take 4 500 mg Amoxicillin 1 hr prior. Inform any surgeon of your port before surgery, if God forbid a hundred million times you need such a thing. Don't let any one other than a chemo nurse or professional who is familiar w/ports touch yours!

Andi

[BonnieR]

I saw the surgeon and have opted to have the port implanted next week. Doing pre-op tomorrow. Now I need to know how long your recovery time was. They say they can actually do my blood work (pre-Procrit) the same day they insert the port! Wow!
I just want to be sure the healing time is not lenghty as I have some traveling I MUST do about 10 days after the port is inserted. The surgeon assured me it would be okay although she offered to postpone it. I am inclinded to GET IT DONE NOW!
Also, where does you port position in relation to bra straps etc? She wanted to put it under the strap of my prosthetic bra. So that the strap "hides" it but I wonder if the strap would irritate it???? I usually wear a camisole, if anything, anyway.
As always, look forward to your wise counsel.

New Shoes, I sent you a private message......

[dhealey]

I love my port, it is in my upper right chest. I forget it is there most of the time. Easy access for blood draws and herceptin treatments. I have never had a problem with mine. I also advocate drinking tons of water before treatment and after. I try to drink at least 8 8oz glasses a day. Good luck!

[Mary Anne in TX]

Bonnie, I do love my port. I usually wear a cami, but when I do wear a bra (maybe once a month), I have had to really search for ones that don't go over my port. That was not comfortable for me. I've had my port for "it seems forever" and I don't care if it does show ever once in a while! It has served me so well. It healed quickly and easily and I used in in about 3 days I think. But I wouldn't want it under my strap unless absolutely necessary. Best of luck on an easy "porting"!! ma

[Cristina19]

Hi Bonnie,

I just had a port "installed" 8 days ago (Wednesday) and followed with my third chemo on Friday. Apparently, they can be used right away..., but that didn't sound like a good idea to me. The surgery is a breeze: at COH they only do chest ports and under general anethesia. The procedure took less than an hour, but you must consider pre-op prep and time to wake up from the anesthesia.

The surgeon placed my port low above my non-effected breast so the little scar will be hidden by a bra or swimsuit. The catheter that actually connects the port to the vein goes up above the clavicle. What I didn't realize is the lower the port, the more the surgeon has to tunnel under the skin. (I love all of this stuff learned through "experience.") It's probably better to have the port placed high on the chest, close to the clavicle so that there is less tunneling; thus, less soreness, less swelling.

Nonetheless, I was sore only the day after and then pretty much okay. The catheter irritates my clavicle and I think I was so tense and trying to protect my chest that I was a little hunched over and having a hard time breathing. Of course, I panic about sensations like that. Now, 8 days later, the chemo effects are wearing off and I'm feeling more "normal."

They pushed me to have a port because they said that the drugs can really damage one's veins. Worse, if there is any leakage, the drugs can damage the tissue around the veins.

I, too, am already sick of surgeries and didn't want any more poking or scars.

Alas.... I now have a port.

All the best,
Cristina

[madubois63]

I've had 2 ports, 2 Hickman catheters, a central line in my neck and a pick-line in my upper right arm, so I think I have a little experience in this department. My first port (8 years ago), was used immediately. It worked great and I had no complaints until it became the ever amazing flipping port. Don't know how it happened, but I woke up one morning and it didn't look right. I went in for treatment and told the nurse. She didn't believe me and tried to access the port - idiot. She kept hitting metal (the back). She then sent me downstairs for an x-ray. The x-ray showed, get this, that the port had flipped - duh! It was my last treatment, so it was no big deal. I got it removed shortly thereafter. Four years later, I had the relapse and got another port. It was placed high up on the chest on the bc side. The doctor that put it in used an ultrasound to find the best vein to use. This one didn't flip, was used immediately and lasted over 2 years. Then came the leukemia and a Hickman catheter was placed on the opposite side. Hickman catheters have 2 or 3 lines hanging on the outside of you and have specific care needs. Ports have to be flushed if not being used. Just before my bone marrow transplant, they replaced my catheter - they wanted a fresh line. My nerves and the cold operating room got the best of me, and I got the chills. when they brought me back to my room, I had a 101 fever that lasted about an hour. They decided my port was infected (I don't believe that) and sent me back down to remove it (I was angry about that). This past June, when I was in the hospital and my liver went in to failure, they discovered 2 (hospital) infections in my catheter and pulled it - leaving me with nothing. Then they stuck a central line in my neck - ugh!! That was HORRIBLE. Very uncomfortable and a bit painful when they put it in (Morphine city!!). The morning they released me, they pulled the central line (yeah) and placed a pick-line in my inner, upper (non-bc) arm. I bought new socks (thick slouchy kind) and cut the ends off. I wore them over the tagaderm patch covering the line (and matched the colors to my outfits - you can see the pink one I was wearing in my picture). This was a pain in the neck, because I had to cover and tape my arm to take a shower everyday. It worked great until the day it fell out - about a month ago. Since then, I've been getting stuck in the hand. It's the only veins that work anymore. Thank God, I've been graduated to labs/doctor visits every other week as of today - YEAH!! I HIGHLY recommend the port!!! It is the most comfortable and easiest to care for of all the options. I know a few people that have had tattoos to cover the scars.

[Joanne S]

I, too, have a Mediport in my upper chest on the non-bc side. It was implanted under the skin by my breast surgeon---a quick outpatient surgery. I'm thinking it was probably a hour or less. The scar is only an inch long. It was a little uncomfortable for approximately one week, but no pain.

I don't have easy to access veins so the mediport has been a major convenience for me with chemo and Herceptin infusions and blood draws. I put some numbing cream on the skin site of the mediport one hour before chemo. This lessens the ouch when the chemo nurse sinks the huber needle into it. Although that's the worst part, it only lasts 2 seconds.

I plan to keep the port for as long as I can even after I complete Herceptin in case I may need future treatment. I heard some woman had their port removed too soon and had to have it implanted again.

Best treatment wishes,