Unhappy with port placement

Ronniekay,

My story is unusual. They did know what treatment I was getting, (it was to be IV chemo whether in the trial or not) as I was supposed to go into a clinical trial and was thought to be stage IIB. When the PET scan was done, to figure out what the fluid around my heart was, they discovered 1) a completely collapsed right lung 2) a spot on my femur. Yes, I hit the jackpot! After the collapsed lung was dealt with, a biopsy confirmed that the spot on my femur was bc. So... I was out of the trial, out of any proposed stage IIB chemo and on to tx for stage IV, which has been an AI, rads to the bone met and two years of Aredia. Coming up on 5 years and still NED.

As to why I have such a stealth port, with no visible line, and only palpation bumps visible, I can't say. I rarely know it's there and neither does anyone else.

PS: the fluid around my heart is still there but is idiopathic and unchanged. It is evaluated every time I have a scan.

I love EMLA! I don't use it for port access (my medical center uses a very effective numbing spray), but I've used it for other things and it is excellent.

hi Patty, good wishes for your port access tomorrow.if you don't have Emla ask for lidocaine spray or little needle. Shouldn't hurt much but I am wishing you a pain free start with your new port. Big hug, Stephanie

They should have told you about Emla when you got your port. I suggest calling first thing in the morning and asking that a prescription be sent electronically or called in to your pharmacy. Hopefully you can get it and apply it an hour before your appointment. If not, you can ask for the spray as Stephanie suggests. Some people feel they don't need a numbing agent for their port access. But like she said, we want to make sure you have a pain-free start.

My port sticks out way more than any of the photos here! Patty, I used to ask for emla cream from the pharmacist, no script, but behind the counter. I used it for a while, but trying to remember to put it on & cover it up etc, drove me crazy, not to mention it was expensive & didn't really numb it that well for me. The one thing I found was that the RN had to be decisive about accessing it. Once she lines up the dots, just shove it in, no messing about. Good luck Patty.

WOOHOO!!! I love that we're the Patty Port Cheer team (and can I say the pix were so interesting!) & so happy it went well!!! Oh how I hope it makes life easier for you :-). I do the blob & Saran Wrap cover 1.5-2 hrs too. I did it 1/2 hr one time & felt it...so Patty...you are a Superwoman!!!

Ahhh Brnxgirl...they do make 2 sizes. I've never been a petite anything...HA!

I'm glad to hear the port access went well, Patty! Every little thing we can do to be more comfortable is important, in my opinion. Yes, the photos were interesting to me because I had nothing to compare mine to before. I'm like you, RonnieKay; I really appreciate the numbing cream. I still think patients should be more informed about ports before getting them, to avoid surprises.

Jumping in based on an earlier comment about access. I have an AngioDynamics Smart Port (power port) and have on incision & no tail. I drew bra strap on my chest before BS installed and she managed to place it so it doesn't rub & rarely shows at all. I had it installed in 2011 and LOVE it. When I went for my last port flush & labs, they were not able to get any blood return. I understand I'll have to go to Interventional Radiology to see if they can find the blockage & cure - or get the port out.

Someone said earlier their port was no longer useful to draw blood, only to put things in. I didn't know you could do that. I'm concerned about an upcoming PET/CT. Where does liquid go if there's a blockage? I'm worried about the nuclear contrast. I was planning on having the port removed after this test, but I agree about the superstition of having it there, especially since I do have lymphadema.

As for the Emla, I originally discovered this magic drug when I was having some electrolysis done some years ago. I've found it works best if I put it on the port one hour before my appointment and cover with saran wrap. Press'N seal works great w/no other tape needed to hold it to your skin. Be sure not to rub it in with your fingers or they will go numb. I use a Q-tip.

Patty - so glad your experience was positive.

Wow Scuttlers...7 yrs is great! I always hold my breath, just a little, until I see the blood come...then I'm happy. My center said they've had people w/20 yr old ports. Minus...I hope your onc can answer your concern about a blockage....and that your scans are clear!!!

Thanks for sharing all this great information about ports! I have been reading with interest because I will be getting my very first port sometime in the next week (waiting for the call to schedule it). The pictures have been helpful also. Can you tell me how long I should wait between getting the port and starting my first IV chemo treatment? How much healing time does it need? It's been more than 5 years with MBC and I'll be starting my first IV chemo, Gemzar. Thanks for all the information here! I appreciate having a place where I can get first hand information!

Groovy - I had my port put on one day & started chemo the next. I was told to make sure the doc left the "dangles" attached at surgery so access was all ready w/no new pokes that first time.

Thanks, guys! My port install is scheduled for Monday 4/4 and then my first treatment of Gemzar is on 4/7. I asked the NP or doctor to call me to tell me what kind of port it is so that I can do some more research. The research here, though, has been very valuable!