Medi-port removal timing?

Ouch_Ouch_Ouch
Ouch_Ouch_Ouch Member Posts: 508 Member

I got a call today out of the blue from a hospital surgery scheduler - she wanted to schedule me for a port removal on Tuesday. Yipes! Apparently, the oncologist's office requested it following my recent visit to her. Since I planned to schedule the follow-up CT scan and scoping/biopsy for October, I am afraid this is too fast.

However, I don't know for sure how it "usually" goes.

Do people generally wait to have the port removed until after the follow-ups show no remaining cancer? If cancer remains, will the port be again utilized? If so, then the one I have should stay put inspite of the discomfort it gives me, no? (Insertion was extremely painful and a horrifying procedure because the radiologist wouldn't give me sedation. I am thoroughly reluctant to repeat such a scenario.)

Thanks for the insight.

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Comments

  • AZANNIE
    AZANNIE Member Posts: 445 Member
    Port

    My port was removed 9 months post treatment after 2 PET scans. So sorry it was a bad experience for you - ouch!  I was sedated but half awake during port installation. I chose local anesthesia for removal so I could go home sooner. Both were outpatient at a hospital. Some have had their ports removed sooner than 9 months and some later than that. I'm sure others will chime in.

    Ann

     

  • judyv3
    judyv3 Member Posts: 143 Member
    Port Removal

    Port placed without anesthesia?  OUCH!  I had my port placed in late October and finished treatment in January.  I still have it and would like to get it out!  I have asked the docs (medical onc, radiation onc) and they both say it should be in for a year after treatment.  I got them to agree to take it out in October.  I will have a PET scan in November so I'm thinking they will probably want to talk me into waiting until after that.  

    The surgeon placed it with anesthesia but said removal is an office procedure.  That terrifies me.  

    I just think I'd like it out.

    Judy

  • mp327
    mp327 Member Posts: 4,440 Member
    Port removal

    Mine went very smoothly and was done 3 months after my treatment ended, at the suggestion of my med onc.  I really didn't think I would be able to get it out that soon, but he seemed confident that I would not need it again.  I had already had both a post-treatment PET scan and a CT scan--the CT sowed no evidence of disease.  Removal was quick and easy and I healed very quickly. 

    Some people keep their ports much longer.  I would recommend having a discussion with your doctor about your hesitation in having it removed, since getting it was so traumatic and you do not wish to repeat that experience.  Keeping it awhile longer will do no harm as long as it's flushed periodically.  Good luck.

  • eihtak
    eihtak Member Posts: 1,473 Member
    Port.....

    Hi, my onc suggested about a year before removal....after a clear CT and PET. I did not have it removed until almost 3yrs post though as I was dx with another ca at my !st PET. When removed it truely was a simple office procedure with numbing of the area and stitches. I was awake and we talked through the whole thing no problems.

    During the 3yrs that I had my port I went in once a month to have it flushed. I never missed one of those appointments and fortunately never had a problem with the port. I have met people who have had them even longer with no problems as well.

    katheryn

  • jcruz
    jcruz Member Posts: 379 Member
    port

    Mine came out about 3 months after treatment.  Not long after treatment I asked my med onc if there was any reason to keep it and said no if further treatment were necessary it wouldn't be chemo and I could have it out as soon as I wanted.  I am horrified that your port was inserted without anesthesia.  Mine was placed at the outpatient surgery center and I had a sedation that wore off quite quickly.  I remember being able to hear the doctors talking as they were finishing the procedure.  That was a little weird.  The removal was in the surgeon's office with lots and lots of local anesthetic.  I was glad to be able to walk out of there and be done with one thing that reminded my of the cancer.

  • knolltop
    knolltop Member Posts: 56
    Port

    I still have mine in...two years after treatment.   It flushes fine, but doesn't draw blood out.    So if I need chemo they will need to replace it.  They say it is better to remove and put one right back in if I needed chemo verses removing it then scar tissue and would problably need to have it on other side.     I was going to ask to have it removed but with the latest scans showing spots on the lungs....it went to the end of my list.      I need to have it flushed again next week.   Next appt with oncologist, I will discuss it with him.

    I was sedated when it went in....and two days later started chemo.    First bout of chemo two years prior to last one...I had IV and it inflitrated and needed to have a donor skin put in where it ate my tendon in my wrist.   

    I wish I would have gotton Port from the beginning 4 years ago.  

    If the Port is working fine...it will be used again.    And sometimes when my Port was working fine....I would even have blood drawn from it on rare occassions..   

    Sorry you had so much pain when it was put in.

    tory 

  • horsepad
    horsepad Member Posts: 146 Member
    I had mine removed 1 year

    I had mine removed 1 year after treatment.  Doctors said wait a year.  I was awake with removal.  Area numbed, didn't hurt at all.  I was sedated when it was put in.

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    judyv3 said:

    Port Removal

    Port placed without anesthesia?  OUCH!  I had my port placed in late October and finished treatment in January.  I still have it and would like to get it out!  I have asked the docs (medical onc, radiation onc) and they both say it should be in for a year after treatment.  I got them to agree to take it out in October.  I will have a PET scan in November so I'm thinking they will probably want to talk me into waiting until after that.  

    The surgeon placed it with anesthesia but said removal is an office procedure.  That terrifies me.  

    I just think I'd like it out.

    Judy

    OUCH indeed!

    Anesthesia was never planned for the insertion, but I was supposed to be sedated, but my heart rate was 41 and it made the radiologist nervous. I had Fentanyl IV and local anesthesia, which was quite painful in spite of the Fentanyl. After that, I became numb, but felt lots of pushing and heard crunching. I was sweating profusely and my head was completely covered with sterile drapes. It was very difficult to prevent myself from leaping onto the ceiling to get away from the scalpel and needles.

    The cardiologist gave me a copy of his last note to give to the doctor with his recommendation for IV atropine and dopamine stand-by highlighted.

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    jcruz said:

    port

    Mine came out about 3 months after treatment.  Not long after treatment I asked my med onc if there was any reason to keep it and said no if further treatment were necessary it wouldn't be chemo and I could have it out as soon as I wanted.  I am horrified that your port was inserted without anesthesia.  Mine was placed at the outpatient surgery center and I had a sedation that wore off quite quickly.  I remember being able to hear the doctors talking as they were finishing the procedure.  That was a little weird.  The removal was in the surgeon's office with lots and lots of local anesthetic.  I was glad to be able to walk out of there and be done with one thing that reminded my of the cancer.

    Oh

    I know from posts I've read, that if cancer persists, surgery could be the next step, but I also thought that chemo was also given then, too. I can't get either the oncologist or radiation oncologist to discuss that possibility. They both say that they've never had a failure with the Mitomycin-5 FU-radiation protocol and it's probably something I need never worry about.

    But I'm so darned good at worrying!

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    Thanks

    Thank you all for the postings. It appears that getting the port out, as much as I would like to, should perhaps wait a little while.

    The cardiologist says that I'll need a pacemaker one of these days (I've been hearing that since I was in my 20s), but they wouldn't do it if I already have a port implanted in my circulatory system. The pacemaker does seem to be getting closer, though not yet imminent. Another thing I will dread - I bet scalpels and needles will be involved.  >_<

  • mp327
    mp327 Member Posts: 4,440 Member

    Oh

    I know from posts I've read, that if cancer persists, surgery could be the next step, but I also thought that chemo was also given then, too. I can't get either the oncologist or radiation oncologist to discuss that possibility. They both say that they've never had a failure with the Mitomycin-5 FU-radiation protocol and it's probably something I need never worry about.

    But I'm so darned good at worrying!

    Ouch

    I just have to comment that for a doctor to tell a patient that they've never had a failure with this protocol and that they never need to worry about it is sort of irresponsible, IMO.  Even if I had a written guarantee from my doctors that my cancer would never return, I would still worry about it.  Doctors just don't get it sometimes.

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    mp327 said:

    Ouch

    I just have to comment that for a doctor to tell a patient that they've never had a failure with this protocol and that they never need to worry about it is sort of irresponsible, IMO.  Even if I had a written guarantee from my doctors that my cancer would never return, I would still worry about it.  Doctors just don't get it sometimes.

    Thanks, mp327 ---

    I think that the doctors are trying to keep me positive, misguided as they might be. I'm the kind of person who likes to know all the landmarks ahead even if I take the next available exit.

    So, Ms mp327: from your much more thorough knowledge of this disease than I have, if the standard procedure doesn't clear the cancer away, IS surgery the usual next step? If any remaining cancer is very small and constrained, is surgery still the next usual step? I can't say that I find that route any more appealing than another round of that awful radiation and chemotherapy. If surgery is performed, is it usually followed up by more chemo and/or radiation?

    I really appreciate all the time and attention you have expended on me.

  • mp327
    mp327 Member Posts: 4,440 Member

    Thanks, mp327 ---

    I think that the doctors are trying to keep me positive, misguided as they might be. I'm the kind of person who likes to know all the landmarks ahead even if I take the next available exit.

    So, Ms mp327: from your much more thorough knowledge of this disease than I have, if the standard procedure doesn't clear the cancer away, IS surgery the usual next step? If any remaining cancer is very small and constrained, is surgery still the next usual step? I can't say that I find that route any more appealing than another round of that awful radiation and chemotherapy. If surgery is performed, is it usually followed up by more chemo and/or radiation?

    I really appreciate all the time and attention you have expended on me.

    Ouch

    I think it's good that your doctors are trying to give you encouragement--mine do that too, only with a word of caution that cancer sometimes has a mind of its own.

    If a person has had surgical removal of a tumor because it was very small and then it comes back, chemo and radiation can be done.  However, if chemo/radiation was the first line of treatment and there is a recurrence, surgery is usually the next step.  It's my understanding that more radiation cannot be done to the area that was originally treated, so it's unlikely that after surgery such as APR, radiation would be part of the protocol.  However, chemo may be done after surgery as extra insurance to make sure all of the cancer is gone.  I am no expert, but I suppose it's possible that if a recurrence would be very small when detected, local excision may be attempted, although I do not know that for sure.

    Thank you for your kind words.  We are all in this together and you have made some very good contributions to this site as well and I thank you for that!  Take care.

    Martha

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    mp327 said:

    Ouch

    I think it's good that your doctors are trying to give you encouragement--mine do that too, only with a word of caution that cancer sometimes has a mind of its own.

    If a person has had surgical removal of a tumor because it was very small and then it comes back, chemo and radiation can be done.  However, if chemo/radiation was the first line of treatment and there is a recurrence, surgery is usually the next step.  It's my understanding that more radiation cannot be done to the area that was originally treated, so it's unlikely that after surgery such as APR, radiation would be part of the protocol.  However, chemo may be done after surgery as extra insurance to make sure all of the cancer is gone.  I am no expert, but I suppose it's possible that if a recurrence would be very small when detected, local excision may be attempted, although I do not know that for sure.

    Thank you for your kind words.  We are all in this together and you have made some very good contributions to this site as well and I thank you for that!  Take care.

    Martha

    Pity party?

    Thank you, mp327. That was very clear. My fingers, toes, and eyes are all crossed that the cancer has evaporated.

    While I was in treatment, I was hospitalized after each chemo round due to neutropenic fevers; my WBC dropped to 0.2 in spite of daily Neupogen shots; I also had internal radiation burns (had to take morphine for a brief time in addition to Fentanyl), I had 7-8 weeks of watery radiation enteritis; I had painful external burns (skin sloughing off in bloody sheets - no Silvadene for me as I may be allergic to sulfa drugs). Therefore, I had some big gaps in the radiation visits, but did finally finish. The radiation oncologist told me that gaps do not signify; it's the total radiation dose that counts and I got that.

    However, I see so many posts here from people who not only took no breaks in treatment, but some even drove themselves every day throughout. If any cancer remains, I will surely blame myself due to those treatment gaps.

    (PS: I absolutely realize that many of the things I went through are common experiences for the people here. I also realize that there are people who had a much worse time than I did. For example, I know of a woman who, after she had her 1st Mitomycin dose, spent two weeks in ICU on life support and has no memory of that time. I cannot imagine going through what some of the people here have gone through. They are far braver than I could ever be.)

  • TraceyUSA
    TraceyUSA Member Posts: 316
    I begged to get mine out!

    I couln't stand the port and wanted it out as soon as they were done with chemo.but they wouldn't take it out until "they didn't think they'd need it anymore."  I finished treatment in March and got it out in August after being made to get a a colonoscopy before they'd remove it. 

    The removal was in the office and really wasn't bad.  They numbed the area and stitched me up when it was out.  I was scared, too, when they said they'd do it in the office because it hurt like hell for a week when they put it in.  I was aware of it and hated it the whole time it was in but the removal really was much easier.  It took a few months for the bump that I assume was the capsule of tissue that formed around it to finally go away.

    To me being "deported" was another milestone indicating that all was well and I was getting back to normal.

     

  • mp327
    mp327 Member Posts: 4,440 Member

    Pity party?

    Thank you, mp327. That was very clear. My fingers, toes, and eyes are all crossed that the cancer has evaporated.

    While I was in treatment, I was hospitalized after each chemo round due to neutropenic fevers; my WBC dropped to 0.2 in spite of daily Neupogen shots; I also had internal radiation burns (had to take morphine for a brief time in addition to Fentanyl), I had 7-8 weeks of watery radiation enteritis; I had painful external burns (skin sloughing off in bloody sheets - no Silvadene for me as I may be allergic to sulfa drugs). Therefore, I had some big gaps in the radiation visits, but did finally finish. The radiation oncologist told me that gaps do not signify; it's the total radiation dose that counts and I got that.

    However, I see so many posts here from people who not only took no breaks in treatment, but some even drove themselves every day throughout. If any cancer remains, I will surely blame myself due to those treatment gaps.

    (PS: I absolutely realize that many of the things I went through are common experiences for the people here. I also realize that there are people who had a much worse time than I did. For example, I know of a woman who, after she had her 1st Mitomycin dose, spent two weeks in ICU on life support and has no memory of that time. I cannot imagine going through what some of the people here have gone through. They are far braver than I could ever be.)

    Ouch

    It is true that each person's experience is different in one or multiple ways.  While my burns and diarrhea were horrible and my worst side-effects by far, my recovery was pretty quick, although I dealt with diarrhea, frequency and urgency issues for months post-treatment. 

    As for gaps in treatment affecting the outcome, I do not know.  My rad onc readily offered me a break during my last week, due to my burns, and I feel certain he would not have done that if he thought it would have compromised the effectiveness of the treatment unless my condition was life-threatening.  Obviously it wasn't and I elected to just continue on and get it over with.  Please do not feel bad about taking those treatment breaks.  It's a decision that is made under some horrible circumctances and we all do the best we can in that situation.  

    I wish you all the best and hope it turns out that your cancer responded to the treatment and is gone for good.  Take care. 

  • judyv3
    judyv3 Member Posts: 143 Member

    Pity party?

    Thank you, mp327. That was very clear. My fingers, toes, and eyes are all crossed that the cancer has evaporated.

    While I was in treatment, I was hospitalized after each chemo round due to neutropenic fevers; my WBC dropped to 0.2 in spite of daily Neupogen shots; I also had internal radiation burns (had to take morphine for a brief time in addition to Fentanyl), I had 7-8 weeks of watery radiation enteritis; I had painful external burns (skin sloughing off in bloody sheets - no Silvadene for me as I may be allergic to sulfa drugs). Therefore, I had some big gaps in the radiation visits, but did finally finish. The radiation oncologist told me that gaps do not signify; it's the total radiation dose that counts and I got that.

    However, I see so many posts here from people who not only took no breaks in treatment, but some even drove themselves every day throughout. If any cancer remains, I will surely blame myself due to those treatment gaps.

    (PS: I absolutely realize that many of the things I went through are common experiences for the people here. I also realize that there are people who had a much worse time than I did. For example, I know of a woman who, after she had her 1st Mitomycin dose, spent two weeks in ICU on life support and has no memory of that time. I cannot imagine going through what some of the people here have gone through. They are far braver than I could ever be.)

    Curious

    I had built in breaks from radiation because it was done during the holidays.  I think that saved me from having an actual break.  It is rough.  I, too, am amazed at the way some are able to handle the treatment.  I became neutropenic after about two weeks of treatment.  I received lots of neupogen shots (that time is a fog to me).  I am still having problems with low WBC.  I was curious if your numbers have come up.  The doctor sometimes acts like it's no big deal and then other times seems really concerned.  My count is now 2.8.  It had gotten up to 3.3 after receiving iron infusion treatment (the iron is for anemia).  But the iron count is staying up and the WBC has gone down.  Not sure what they will do now.  Hopefully, just wait and see.  I feel good and knock wood, haven't been sick.

    Judy

  • mp327
    mp327 Member Posts: 4,440 Member
    judyv3 said:

    Curious

    I had built in breaks from radiation because it was done during the holidays.  I think that saved me from having an actual break.  It is rough.  I, too, am amazed at the way some are able to handle the treatment.  I became neutropenic after about two weeks of treatment.  I received lots of neupogen shots (that time is a fog to me).  I am still having problems with low WBC.  I was curious if your numbers have come up.  The doctor sometimes acts like it's no big deal and then other times seems really concerned.  My count is now 2.8.  It had gotten up to 3.3 after receiving iron infusion treatment (the iron is for anemia).  But the iron count is staying up and the WBC has gone down.  Not sure what they will do now.  Hopefully, just wait and see.  I feel good and knock wood, haven't been sick.

    Judy

    Judy

    It took a very long time for my WBC and RBC to come back into normal range.  My oncologist never seemed too concerned, but my internist was ready to send me off to a hematologist, which I refused.  They are now in normal range.  I am 6 years post treatment.

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    TraceyUSA said:

    I begged to get mine out!

    I couln't stand the port and wanted it out as soon as they were done with chemo.but they wouldn't take it out until "they didn't think they'd need it anymore."  I finished treatment in March and got it out in August after being made to get a a colonoscopy before they'd remove it. 

    The removal was in the office and really wasn't bad.  They numbed the area and stitched me up when it was out.  I was scared, too, when they said they'd do it in the office because it hurt like hell for a week when they put it in.  I was aware of it and hated it the whole time it was in but the removal really was much easier.  It took a few months for the bump that I assume was the capsule of tissue that formed around it to finally go away.

    To me being "deported" was another milestone indicating that all was well and I was getting back to normal.

     

    TraceyUSA:
    "I was aware of it

    TraceyUSA:

    "I was aware of it and hated it the whole time it was in" - ME TOO! IT HURTS FREQUENTLY!

    ". . .but the removal really was much easier." - VERY GLAD TO HEAR IT!

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    mp327 said:

    Judy

    It took a very long time for my WBC and RBC to come back into normal range.  My oncologist never seemed too concerned, but my internist was ready to send me off to a hematologist, which I refused.  They are now in normal range.  I am 6 years post treatment.

    WBC

    My WBC finally went up to 6.3 post-treatment, but for the past few tests, it's been 3.5. The oncologist says it has to get down below 2 before she gets concerned. My granulocytes are normal at 2.7 and she says the most important component of the WBC. My ANC is also in the normal range - up to 5021, currently down to 2653. According to Wikipedia, the ANC (Absolute Neutrophil Count) is of special interest in cancer treatment. My doctor and infusion center pay attention to that value, too. (Per WP, normal is about 1,500-8,000.) In addition, the doctor said that some people have a naturally low WBC when they are not fighting an infection.

    The upshot is that I don't have to avoid crowds.

    http://www.nytimes.com/health/guides/test/cbc/overview.html

    http://www.emedicinehealth.com/complete_blood_count_cbc/article_em.htm

    http://en.wikipedia.org/wiki/Absolute_neutrophil_count