port has flipped, on avastin, what to do?

sherryan
sherryan Member Posts: 4
edited April 2011 in Ovarian Cancer #1
So my port has flipped over. I have 2 doctors, an oncologist and gyn-onc. One says I can have it surgically flipped back and possibly it needs to be reattached, no problem while on Avastin treatment. The other says, "no" you will have to wait for 28 days after your treatment with Avastin is done. Hummm................ And now my mind is busy wondering how those veins in there are doing all twisted, and does it need to be flushed if it is not being used? and what is more important, correcting the port and stopping the Avastin or visa versa?

The surgeon who put the port in flipped it manually but it went right back. He said this has never happen before, except to another one of his patients 2 months ago. I felt like he was not even aware of the possible side affects of the chemo I was on. He was ready to cut right in the office, not me! I do not trust him.

Another interesting thing, none of the doctors mentioned that maybe it should not have been put in at all since I had my first Avastin 3 days before the port insertion surgery and you can do Avastin IV.

Funny that I ended out in the hospital with neutropenia about 10 days after the port insertion. Humm...........

The hardest part is lossing your confidence in your doctors, but I guess it is a good lesson for me to stay educated and be my own advocate. I think in the long run, that will help me make good decisions about my care on this journey. I need to move it to a positive place. Thank you for listening, and please share any information that will help me with this part of my journey.

Comments

  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    I've never been on Avastin
    I've never been on Avastin but I had one port removed (it eroded thru the skin) and a new one placed without interrupting my chemo. I was doing Taxol maintenance at the time.

    The surgeon took mine out in his office, so I'm pretty sure yours could flip your port in his office without incident. My surgeon said there are three approaches: (1) don't attach it at all, (2) attach it with traditional sutures, or (3) attach it with sutures that dissolve over time. My first surgeon used regular sutures, the surgeon who did the remove/replace surgery used dissolvable sutures.

    It's frustrating when two different professionals give you opposing advice. You can only go with your gut feeling. It's your body; don't let them do anything that doesn't feel right.

    Carlene
  • carolenk
    carolenk Member Posts: 907 Member

    I've never been on Avastin
    I've never been on Avastin but I had one port removed (it eroded thru the skin) and a new one placed without interrupting my chemo. I was doing Taxol maintenance at the time.

    The surgeon took mine out in his office, so I'm pretty sure yours could flip your port in his office without incident. My surgeon said there are three approaches: (1) don't attach it at all, (2) attach it with traditional sutures, or (3) attach it with sutures that dissolve over time. My first surgeon used regular sutures, the surgeon who did the remove/replace surgery used dissolvable sutures.

    It's frustrating when two different professionals give you opposing advice. You can only go with your gut feeling. It's your body; don't let them do anything that doesn't feel right.

    Carlene

    You need more information
    You have to find out WHY the oncologist who told you to wait gave you that advice.

    I am not aware that Avastin poses a bleeding risk; perhaps that doctor is afraid that the wound will not heal because Avastin inhibits the growth of new blood vessels.

    I would rather wait & have an entire new port put in rather than risk a nasty wound.

    You need more information before you can make a decision--maybe the nurse can help you.

    Please keep us posted--we will learn from your experience.

    Carolen
  • Tethys41
    Tethys41 Member Posts: 1,380 Member
    Port replacement
    When I was on Avastin, I was told I could not have any ELECTIVE surgery during the treatments and would have to wait at least 21 days following the last treatment. I did, however, have my port removed and another one placed between my regular Avastin treatments. The doc who did the procedures was happy to hear I was 18 days out from my previous treatment, and had no hesitation about doing the procedures. I had my next treatment three days later through the new port. I experienced no negative side effects.
  • sherryan
    sherryan Member Posts: 4

    I've never been on Avastin
    I've never been on Avastin but I had one port removed (it eroded thru the skin) and a new one placed without interrupting my chemo. I was doing Taxol maintenance at the time.

    The surgeon took mine out in his office, so I'm pretty sure yours could flip your port in his office without incident. My surgeon said there are three approaches: (1) don't attach it at all, (2) attach it with traditional sutures, or (3) attach it with sutures that dissolve over time. My first surgeon used regular sutures, the surgeon who did the remove/replace surgery used dissolvable sutures.

    It's frustrating when two different professionals give you opposing advice. You can only go with your gut feeling. It's your body; don't let them do anything that doesn't feel right.

    Carlene

    flipping port
    Thanks for your responses, this is my first time to blog at all. It is good to hear from the "real people". So far I have talked with a nurse and I think she is listening. I will be seeing the oncologist on Tuesday. I believe there is away you can see what is going on with the port through a dye study. I do not think I should have any surgery with the avastin in my system. This is my second port, this time the bruise was huge and lasted for weeks, not like the first one. That is a side affect of Avastin, I did not know why it was so different at the time, I believe it was the avastin. The only people who saw it were the nurses, and they just commented on what a big bruise it was. I think it was related to the avastin I was given 3 days before the port was put in.

    The nurse said that you should have your port flushed every 6 weeks. So, it seems to me I need to have a working port, or at least one safely in my body. The surgeon has not called back or my gyn-onc. It will be interesting to see what they say. At this point I do want to know what is going on under my skin, I will ask for the dye test. Has anyone had the dye test done on their port?

    Thank you!
  • kayandok
    kayandok Member Posts: 1,202 Member
    You can read about it
    in detail if you google "avastin and surgery". While you are on avastin, wounds tend to heal slower, and the rule of thumb is 30 days after taking avastin for doing surgery (that is what my doc told me). There really isn't much bleeding with putting in a port, but the skin does get cut and there is a potential for bleeding if something were to go wrong, right? So, it sounds like one fo the onc's is very very careful and the other probably knows about the the avastin issue, but is not worried about anything going wrong, therefore isn't concerned, but I would ask him about his reasoning on this and hold him accountable for what he told you. I would opt to be safe and wait the 28 days before having it replace/fixed.

    You are right, YOU are your own best advocate!

    Take care,
    kathleen
  • upsofloating
    upsofloating Member Posts: 466 Member
    sherryan said:

    flipping port
    Thanks for your responses, this is my first time to blog at all. It is good to hear from the "real people". So far I have talked with a nurse and I think she is listening. I will be seeing the oncologist on Tuesday. I believe there is away you can see what is going on with the port through a dye study. I do not think I should have any surgery with the avastin in my system. This is my second port, this time the bruise was huge and lasted for weeks, not like the first one. That is a side affect of Avastin, I did not know why it was so different at the time, I believe it was the avastin. The only people who saw it were the nurses, and they just commented on what a big bruise it was. I think it was related to the avastin I was given 3 days before the port was put in.

    The nurse said that you should have your port flushed every 6 weeks. So, it seems to me I need to have a working port, or at least one safely in my body. The surgeon has not called back or my gyn-onc. It will be interesting to see what they say. At this point I do want to know what is going on under my skin, I will ask for the dye test. Has anyone had the dye test done on their port?

    Thank you!

    I have had the dye study -
    I have had the dye study - it is essentially a CT scan that just shows the flow of dye thru the port and where it goes. It is just like getting your port flushed except they inject the dye and scan. Mine was done by an Interventional Radiologist. It took only about 10 minutes.
    Annie
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    sherryan said:

    flipping port
    Thanks for your responses, this is my first time to blog at all. It is good to hear from the "real people". So far I have talked with a nurse and I think she is listening. I will be seeing the oncologist on Tuesday. I believe there is away you can see what is going on with the port through a dye study. I do not think I should have any surgery with the avastin in my system. This is my second port, this time the bruise was huge and lasted for weeks, not like the first one. That is a side affect of Avastin, I did not know why it was so different at the time, I believe it was the avastin. The only people who saw it were the nurses, and they just commented on what a big bruise it was. I think it was related to the avastin I was given 3 days before the port was put in.

    The nurse said that you should have your port flushed every 6 weeks. So, it seems to me I need to have a working port, or at least one safely in my body. The surgeon has not called back or my gyn-onc. It will be interesting to see what they say. At this point I do want to know what is going on under my skin, I will ask for the dye test. Has anyone had the dye test done on their port?

    Thank you!

    I had the dye study done on
    I had the dye study done on my first port. My port was placed while I was in the hospital being de-bulked, in order to deliver blood and TPN feedings. It was placed one moring and the first attempt to access it - about two hours later - was not successful. My breast swelled up, obviously full of fluid from the infusion (thank goodness it was just saline/glucose). They thought the port might be defective and leaking, so they sent me downstairs to x-ray for a dye test.

    It was really kind of amusing. The tech was very abrupt at first and said, "I don't know why they wanted a dye test. There is nothing wrong with your port." So I showed him my huge, watermelon-sized right boob and explaiend that something, somewhere was leaking fluid under the skin. His eyes popped out of his head and he decided to run the test again, just to be sure the port was not leaking. Turned out the nurse was new at accessing ports and she had not done it correctly.

    Carlene
  • kayandok
    kayandok Member Posts: 1,202 Member

    I had the dye study done on
    I had the dye study done on my first port. My port was placed while I was in the hospital being de-bulked, in order to deliver blood and TPN feedings. It was placed one moring and the first attempt to access it - about two hours later - was not successful. My breast swelled up, obviously full of fluid from the infusion (thank goodness it was just saline/glucose). They thought the port might be defective and leaking, so they sent me downstairs to x-ray for a dye test.

    It was really kind of amusing. The tech was very abrupt at first and said, "I don't know why they wanted a dye test. There is nothing wrong with your port." So I showed him my huge, watermelon-sized right boob and explaiend that something, somewhere was leaking fluid under the skin. His eyes popped out of his head and he decided to run the test again, just to be sure the port was not leaking. Turned out the nurse was new at accessing ports and she had not done it correctly.

    Carlene

    Carlene,
    you should write a book about your journey since dx. You have more funny stories than anyone I know! I love the watermellon-sized boob image.
    k:)
  • clamryn
    clamryn Member Posts: 508

    I had the dye study done on
    I had the dye study done on my first port. My port was placed while I was in the hospital being de-bulked, in order to deliver blood and TPN feedings. It was placed one moring and the first attempt to access it - about two hours later - was not successful. My breast swelled up, obviously full of fluid from the infusion (thank goodness it was just saline/glucose). They thought the port might be defective and leaking, so they sent me downstairs to x-ray for a dye test.

    It was really kind of amusing. The tech was very abrupt at first and said, "I don't know why they wanted a dye test. There is nothing wrong with your port." So I showed him my huge, watermelon-sized right boob and explaiend that something, somewhere was leaking fluid under the skin. His eyes popped out of his head and he decided to run the test again, just to be sure the port was not leaking. Turned out the nurse was new at accessing ports and she had not done it correctly.

    Carlene

    I had to laugh
    Carlene... you made me think back to one of my experiences. When I first had ovarian cancer in 1991 they gave me one radiation treatment which was administered with an injection into the abdomen. This was done after my surgery. Well they allowed an intern to administer it. You guessed it.... she didn't get it through the abdominal wall. So all the saline started filling up under my skin.... I looked like I had a huge water balloon on the side of my stomach.

    I looked down and I said, "Am I going to have to live like this the rest of my life?" The doctor just fluffed me off and said...."Oh no, your body will absorb it."

    Can you imagine if we all got together and told our funny experiences and put them in a book. What a riot.

    Linda
  • jbeans888
    jbeans888 Member Posts: 313
    my port flipped too
    My port has flipped also, but I am not on Avistan. I just got it fixed today. It wasn't that bad. They just went in and flipped it back. What they did for me was put a stitch in the back so it won't flip again.

    I know how you feel about loosing confidence in your doctors because I have also had that feeling, but you are right we all need to stay educated and positive.
  • jbeans888 said:

    my port flipped too
    My port has flipped also, but I am not on Avistan. I just got it fixed today. It wasn't that bad. They just went in and flipped it back. What they did for me was put a stitch in the back so it won't flip again.

    I know how you feel about loosing confidence in your doctors because I have also had that feeling, but you are right we all need to stay educated and positive.

    This comment has been removed by the Moderator
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    unknown said:

    This comment has been removed by the Moderator

    I can barely feel the tubing
    I can barely feel the tubing on this (second) port, but the first one was placed so close to the surface, and I was about 30 pounds thinner (and tend to have a prominent collarbone anyway) that it was easily seen/felt. I knew from day one that this was likely to be an issue, but everyone just kind of patted me on the head and said, "No...it's fine." Of course, it wasn't fine. Anyway, my port was first accessed just a couple of hours after placement. They sprayed it with something (a very cold something) and it didn't hurt. (Of course, I was on a morphine pump at the time, so they probably could have cut my arm off and I wouldn't have noticed.)

    I have had my port(s) accessed approximately two dozen times now and I can tell you with absolute certainty that it has more to do with the skill of the nurse/tech than any other single factor. My last stick was a couple of weeks ago at MSKCC and I forgot the numbing cream. First access ever without some kind of numbing agent. I was very nervous. And it was almost totally painless. This lady knew her stuff, let me tell you.

    If you go to the same cancer factory (as Sarah calls it) every time, and you find a nurse with a gentle touch and a good technique, don't be shy about requesting her the next time.

    Carlene
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    kayandok said:

    Carlene,
    you should write a book about your journey since dx. You have more funny stories than anyone I know! I love the watermellon-sized boob image.
    k:)

    Kathleen....I know. It's
    Kathleen....I know. It's unbelievable. Almost no one I talk to has ever seen a Power Port erode thru the skin, so of course, when I called my doctor's office and told them that was what was going on, they didn't take me seriously.

    I went out of town like that, because they convinced me it was all in my head. Then I got up a few days later and there was a dime-sized hole in my chest, and I could see/feel something metalic sticking out. Talk about weird!

    I went to the nearest ER - a tiny hospital on the Texas side of the Texas/Mexico border - and they had no clue, really, what to do. A compromised port is an expressway for bacteria, straight to your bloodstream, so they gave me antibiotics and covered it with a clear, stick-on bandage thing and told me not to touch it and go straight to my doctor's office when I got home. They actually advised me to take the next flight out, but I didn't. I waited until the next day and left on schedule. I've had cancer, it's hard to intimidate me.

    Carlene
  • jbeans888
    jbeans888 Member Posts: 313
    unknown said:

    This comment has been removed by the Moderator

    Tubing
    I am also thin and you can see the tubing on my collar bone too. They told me that it should settle. Whatever that means. Hopefully that is the case. When I first got my port in the catheter was also very sensitive over my collar bone but it has subsided since then. The only pain I have now is from the port getting re-placed from it getting flipped.