My Port has Slipped

Songflower
Songflower Member Posts: 608
edited March 2014 in Uterine Cancer #1
I had my CA 125 and PET scan, nothing perfect, nothing horrible. Just the watch and wait. But I still turn into nervous Nellie when I go. Here I am at 58 like a little girl with stage fright. I want someone to hold my hand. I need extra deoderant and Pino Griegio (OK, OK, I am drinking green tea and eating tumeric).

But the PET scan showed my port has slipped into the coronary sinus. They haven't been able to get blood from it for about a month or so. Everyone's a little upset except my Doc who is out of town this week. I wonder if I did it doing yoga with my neuropathic feet? has anyone heard of this before? So I guess when I see my Gyn Onc next week I will be back on the surgery schedule.

I haven't heard from Oprah since I emailed her and asked if she would unite us on the show. And I miss Claudia. Thanks for listening.

Love,
Diane

Comments

  • Ro10
    Ro10 Member Posts: 1,561
    Diane I had to have my port repositioned.
    I had my port inserted in July. It worked fine for the July chemo (5th chemo), but for the August chemo (6th chemo)it only gave back a small amount of blood. They were able to use it for chemo, but not the blood draw. After my last chemo in August I had a CAT scan and it would not draw blood again. I had a chest x-ray and it showed that the tip of the catheter was in the Azygous vein. I never heard of that vein before (I too am an RN).

    I found out later that it was there when the surgeon inserted it. The surgeon said the port was fine, and there was no reason it could not be used for chemo and CAT scans. Of course none of the radiology personell or nurses would use the port if it did not draw blood.

    The azygous vein is a smaller vein and would collapse when they tried to aspirate blood. The nurse also told me that the chemo could damage this vein if chemo was repeatedly given in it.

    My onocologist called an interventional radiologist who said he thought he could reposition it into a correct vein. He was able to reposition it, but it ended up to be more difficult than he had anticipated. Because the catheter was so long it is now in the the Right atrium. It has not given me any problems being there. There should be good blood flow there!

    I pray that your CA 125 and PET scan show good results. In peace and caring.

    I too worry about exercising my arms with my port. I used an Ab roller one day and worried that I had ruined my port. So I don't use the ab roller anymore. Luckily my port has worked okay after that.
  • Songflower
    Songflower Member Posts: 608
    Ro10 said:

    Diane I had to have my port repositioned.
    I had my port inserted in July. It worked fine for the July chemo (5th chemo), but for the August chemo (6th chemo)it only gave back a small amount of blood. They were able to use it for chemo, but not the blood draw. After my last chemo in August I had a CAT scan and it would not draw blood again. I had a chest x-ray and it showed that the tip of the catheter was in the Azygous vein. I never heard of that vein before (I too am an RN).

    I found out later that it was there when the surgeon inserted it. The surgeon said the port was fine, and there was no reason it could not be used for chemo and CAT scans. Of course none of the radiology personell or nurses would use the port if it did not draw blood.

    The azygous vein is a smaller vein and would collapse when they tried to aspirate blood. The nurse also told me that the chemo could damage this vein if chemo was repeatedly given in it.

    My onocologist called an interventional radiologist who said he thought he could reposition it into a correct vein. He was able to reposition it, but it ended up to be more difficult than he had anticipated. Because the catheter was so long it is now in the the Right atrium. It has not given me any problems being there. There should be good blood flow there!

    I pray that your CA 125 and PET scan show good results. In peace and caring.

    I too worry about exercising my arms with my port. I used an Ab roller one day and worried that I had ruined my port. So I don't use the ab roller anymore. Luckily my port has worked okay after that.

    Runaway Ports
    Thanks Ro, I'm glad I am not the only one with a funky port!

    Love,
    Diane
  • daisy366
    daisy366 Member Posts: 1,458

    Runaway Ports
    Thanks Ro, I'm glad I am not the only one with a funky port!

    Love,
    Diane

    Exercising
    Boy, I must be lucky, stupid or ignorant. I have been exercising without thinking about my port - so far no problems. I'm even doing pectoral (butterfly) exercises. Since I haven't had any problems, I'm going to continue. I don't remember being told to restrict anything.

    Should I be more cautious?? Mary Ann
  • Songflower
    Songflower Member Posts: 608
    daisy366 said:

    Exercising
    Boy, I must be lucky, stupid or ignorant. I have been exercising without thinking about my port - so far no problems. I'm even doing pectoral (butterfly) exercises. Since I haven't had any problems, I'm going to continue. I don't remember being told to restrict anything.

    Should I be more cautious?? Mary Ann

    Exercising with the port
    I;ll get more info this week on my appt. No one ever gave me any restrictions. I asked if I could scuba dive and they said yes. I'm cooling my heels in exercise since I can feel the difference in my chest. So if I wasn't having any problems I think you can safely butterly.

    Diane
  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    Port slippage or catheter movement
    Ports can slip within the subcutaneous pocket (just under the skin) in which they were placed with repeated movements of arms/shoulders or "twiddling" with them. Twiddling is when a person might unknowningly or knowingly manipulate or fidget with the area where the port is.

    Sometimes if people have done a lot of golfing for example some devices will slip. This is very rare and manufacturers have increased their product specification requirements to accomodate a more active lifestyle of an individual with a port in.
    We are no longer hospitalized for chemo and are more active..thank goodness!

    Some of the interventional radiologists will suture the port to muscle fascia in the pocket they created and some don't put any sutures from the portal to the muscle....the port just floats in the "pocket" made with the stab wound in our chests. The catheter can be preconnected to the port or connected to the port by the surgeon by just clicking a clip tight at the outlet of the port itself. Interventional radiologist can check placement with fluroscopy done in their outpatient center at the hospital.

    Nurses won't infuse chemo into a port unless they can get a good blood return when they remove the heparin prior to connecting individual to IV.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980

    Port slippage or catheter movement
    Ports can slip within the subcutaneous pocket (just under the skin) in which they were placed with repeated movements of arms/shoulders or "twiddling" with them. Twiddling is when a person might unknowningly or knowingly manipulate or fidget with the area where the port is.

    Sometimes if people have done a lot of golfing for example some devices will slip. This is very rare and manufacturers have increased their product specification requirements to accomodate a more active lifestyle of an individual with a port in.
    We are no longer hospitalized for chemo and are more active..thank goodness!

    Some of the interventional radiologists will suture the port to muscle fascia in the pocket they created and some don't put any sutures from the portal to the muscle....the port just floats in the "pocket" made with the stab wound in our chests. The catheter can be preconnected to the port or connected to the port by the surgeon by just clicking a clip tight at the outlet of the port itself. Interventional radiologist can check placement with fluroscopy done in their outpatient center at the hospital.

    Nurses won't infuse chemo into a port unless they can get a good blood return when they remove the heparin prior to connecting individual to IV.

    My surgeon stressed wearing a good bra always with a port.
    I wasn't given any real physical limitations when I had my port installed, but my surgeon did recommend that I always wear a good bra from "the minute you rise from bed, removing it as the very last thing before you go to sleep." He said the downward pull from the weight of the breasts causes the most port discomfort, but he may have been talking 'post-surgery' and not long-term. I'm not that "heavy-busted", but I took his advice and got 2 special 'sleep' bras and wore those even at night at first. I'm not sleeping in a bra anymore, but I do still get a bra on earlier in the day than I might have prior to having the port in. (I love to stay in my robe half the day! HA!) By the way, the Sleep Bras are GREAT for scans since they have no metal fasteners, and very comfy, so I can kind of justify the [email protected] they cost.

    I can well imagine that anything that contracts the pectoral muscles over and over would have the potential of squeezing the port and flipping it over. My port really stands up against the skin; you can easily see the triangle of 3 little raised dots under my skin. I have a Power Port.
  • Kaleena
    Kaleena Member Posts: 2,064 Member
    Port
    Hello All:

    I have had my port in since November of 2005. I have been done with chemo since May of 2006. No one wanted to remove my port so I have been getting it flushed monthly since then. I know it is tilted. Lately though I have notice some burning sensations when I am at a certain position. When I had my port flushed in December, the nurse missed and the liquid "flush" started to burn. She then repositioned the catheter. I don't know if this has something to do with my burning sensation now.

    The CT Scan shows that it is also kinked. However, I still get a blood return. Although sometimes I have to sit straight up chest out to get blood. lol.

    Think happy thought!

    Kathy
  • Songflower
    Songflower Member Posts: 608
    slipping port
    I think the tube slipped; not the port. It's in the coronary sinus. they are taking it out Monday. Back under the gun!

    Diane
  • slipping port
    I think the tube slipped; not the port. It's in the coronary sinus. they are taking it out Monday. Back under the gun!

    Diane

    This comment has been removed by the Moderator
  • deanna14
    deanna14 Member Posts: 732
    Kaleena said:

    Port
    Hello All:

    I have had my port in since November of 2005. I have been done with chemo since May of 2006. No one wanted to remove my port so I have been getting it flushed monthly since then. I know it is tilted. Lately though I have notice some burning sensations when I am at a certain position. When I had my port flushed in December, the nurse missed and the liquid "flush" started to burn. She then repositioned the catheter. I don't know if this has something to do with my burning sensation now.

    The CT Scan shows that it is also kinked. However, I still get a blood return. Although sometimes I have to sit straight up chest out to get blood. lol.

    Think happy thought!

    Kathy

    Kathy
    You might want to check again on getting your port removed soon. If memory serves me correctly, 5 years is the recommended maximum that they should stay in.
  • Songflower
    Songflower Member Posts: 608
    unknown said:

    This comment has been removed by the Moderator

    Ports
    Actually the port never really bothered me. It doesn't limit my movement and was so handy for chemo. I have only one vein they can use. If you ever have a port it isn't bad at all. Mine just kinked the tube. During radiation my intestine fell down and I did an upside down thing trying to get my intestines to fall the other way. It didn't work. It's an old advance yoga routine. But it may have flipped my port.

    Diane