Question about ports...
I just finished my 12 rounds of FOLFOX and am counting down the days until my reconnection surgery. I was just wondering how many of you that had ports put in prior to chemo had them removed right after you were finished. Part of my wants it out, but I also know that I'm at a higher risk than most for a recurrence and for that reason, maybe I should keep it.
I'm not really sure what I should do. Any input would be greatly appreciated.
Thanks,
Elizabeth
Comments
-
Good question!
Hi Elizabeth,
That's a very good question. I kept my port in about a year after my last treatment because I kept thinking that it would be a hassle to have to re-introduce it in the event of recurrence. I had a "low" risk of recurrence, so finally I just had it taken out and let go of that security blanket. But if you are at high risk, you might just want to keep it in. You just need to have it flushed every 3-6 weeks with heparin or something. My aunt has had several cancers and finished her last chemo about 5 years ago, but she decided to keep it in this time, because she had it put in 3 times and removed twice. She just has it flushed regularly. Either way, check with your oncologist first. I hope you NEVER need it again!
Hugs,
Kirsten0 -
ports
I had the decision made for me the first time around as 6 inches of the tubing broke off and was floating free in my heart 3 treatments shy of the end of my first round of chemo. They had to retrieve it and the port was removed after chemo ended. When i had my recurrence in 2006, a new port was put in on the other side, and it's been in ever since. Again, the decision for removal isn't really one I have because I have treatments every 3 weeks of Avastin when I'm not on regular chemo. I haven't had any problems with this new port, so i think unless i find myself not getting treatments for months on end, I wouldn't even consider having it removed.
mary0 -
To remove or not to remove, that is the question.....
Hi Elisabeth,
Congrats on finishing your treatment!!! To remove or not to remove that is the question. I think it really depends on the oncologist and the patient. My oncologist wanted my port to stay in for 2 years. It did not give me any problems and actually was kind of a security blanket the first year or so after treatment. I did not intend to have to use it again, but I wasn't ready to part with it. My port was very good to me and I had a lot of respect for it. Anyway my 2 year mark was in Septmeber (stage III rectal cancer, age 32) and on December 1st we parted ways. Just a small scar is my only reminder.
It's a personal decision and there is no right or wrong. Don't take it out prematurely if you are not ready. Removing it right away does not ensure that something won't recur or leaving it in does not mean that you are not positive for your future health.
Kiersten0 -
Very Convenient
Hi Elizabeth,
I decided to leave mine in. My veins are really, really bad and I figure ya just never know when you might need it, so I'm leaving mine in. I have it flushed with Saline and they make sure they can get a fresh draw of blood from it and then it's followed my Heparin. I have this done once a month, every 6 weeks at the most. The convenience of the port is worth the inconvenience of seeing my doctor every so often. They also use my port for my colonoscopies as they put me completely out for them so I figure it's pretty handy. Otherwise they have to use the veins in my hands and that hurts! Good luck with your decision!
Jorie0 -
What the others said... it
What the others said... it really is a personal decision that should be made with your oncologist.
I had mine in for about 5 months after I finished chemo and would definitely have left it longer, but it was rubbing up against my collar bone, creating a sharp pain in my shoulder. So my oncologist said it would be best to take it out.
So far, I have not needed anymore chemo... but if I do, a port will go right back in
Hugggggs,
Cheryl0 -
Off the subjectmsccolon said:ports
I had the decision made for me the first time around as 6 inches of the tubing broke off and was floating free in my heart 3 treatments shy of the end of my first round of chemo. They had to retrieve it and the port was removed after chemo ended. When i had my recurrence in 2006, a new port was put in on the other side, and it's been in ever since. Again, the decision for removal isn't really one I have because I have treatments every 3 weeks of Avastin when I'm not on regular chemo. I haven't had any problems with this new port, so i think unless i find myself not getting treatments for months on end, I wouldn't even consider having it removed.
mary
Mary,
i know this is off the subject but after reading your post, it brought up a question I have. I was wondering why my ONC doesnt have me on Avastin? I see him on Thursday and will be asking him that question, but my question to you is, what or how is Avastin given? I dont have the port anymore, so how would it be given to me if my ONC decides to put me on it? I know I can ask him in a couple of days, but thought I would ask you now!
THanks
Beth0 -
Hey Bethdorookie said:Off the subject
Mary,
i know this is off the subject but after reading your post, it brought up a question I have. I was wondering why my ONC doesnt have me on Avastin? I see him on Thursday and will be asking him that question, but my question to you is, what or how is Avastin given? I dont have the port anymore, so how would it be given to me if my ONC decides to put me on it? I know I can ask him in a couple of days, but thought I would ask you now!
THanks
Beth
I forget which chemo drugs you are on... but from what I recall Avastin is administered with the usual traditional chemo drugs, either IV or through the port. How are yours being administered now, or have you stared yet?
Hugggggs,
Cheryl0 -
OralCherylHutch said:Hey Beth
I forget which chemo drugs you are on... but from what I recall Avastin is administered with the usual traditional chemo drugs, either IV or through the port. How are yours being administered now, or have you stared yet?
Hugggggs,
Cheryl
Cheryl,
I am taking Oral Xeloda, and was actually wondering why that is all I am taking. I read that Mary was taking Avistan and again wondered why I am not taking that, and how it was given, because I dont have the port anymore since we decided to do the Oral chemo.
Yes I started and have completed one cycle of Xeloda. I take it for 14 days and then 7 days off. I start again this weekend. I was also wondering if I were to go to an inpatient place would they allow me to continue with my chemo, what do you think?
Beth0 -
Avastindorookie said:Off the subject
Mary,
i know this is off the subject but after reading your post, it brought up a question I have. I was wondering why my ONC doesnt have me on Avastin? I see him on Thursday and will be asking him that question, but my question to you is, what or how is Avastin given? I dont have the port anymore, so how would it be given to me if my ONC decides to put me on it? I know I can ask him in a couple of days, but thought I would ask you now!
THanks
Beth
it's a very mild drug and could easily be given via an IV. It's a short infusion, only about 45 minutes. Avastin is an angiogenisis drug, meaning it's purpose is to stop the cancer's ability to create a blood supply (which is why some people get nose bleeds and other bleeding problems from it). It can also increase your blood pressure, which I am now on medication for that.
mary0 -
port access for colonoscopiesMoonDragon said:Very Convenient
Hi Elizabeth,
I decided to leave mine in. My veins are really, really bad and I figure ya just never know when you might need it, so I'm leaving mine in. I have it flushed with Saline and they make sure they can get a fresh draw of blood from it and then it's followed my Heparin. I have this done once a month, every 6 weeks at the most. The convenience of the port is worth the inconvenience of seeing my doctor every so often. They also use my port for my colonoscopies as they put me completely out for them so I figure it's pretty handy. Otherwise they have to use the veins in my hands and that hurts! Good luck with your decision!
Jorie
you are SO lucky! The only people that access my port are the onc nurses! They go at my veins in my hands which are VERY hard to find and there is always pain involved! The onc nurses say the nurses at the hospital just don't know how to access it properly and thus don't try. They did say one time that I could always come to them for access, then onto the hospital, and that's probably what I will do next time.
mary0 -
Avastinmsccolon said:Avastin
it's a very mild drug and could easily be given via an IV. It's a short infusion, only about 45 minutes. Avastin is an angiogenisis drug, meaning it's purpose is to stop the cancer's ability to create a blood supply (which is why some people get nose bleeds and other bleeding problems from it). It can also increase your blood pressure, which I am now on medication for that.
mary
Beth, I'm certainly no doctor, nor do I play one on TV, so these are very good questions to ask your doctor.
Mary's description of Avastin is very good and that could be exactly why you haven't been given Avastin. If the purpose of the drug is to stop the cancer's ability to create a blood supply... at this point you don't have a cancer, hence no blood supply to stop. With your surgery, that removed the known cancer... and now, you are on the oral chemo, which is more like a maintenance to be able to kill off any potentially individual cancer cells that may be floating about.
My "blunt" radiologist told me that, as a Stage IV cancer, there's a very high chance that I have individual cancer cells ... but where they will land or if they will even take root is anyone's guess. Keeping in mind, EVERYONE has cancer cells in their bodies... it's whether or not they take root that is the problem. So the doctors are not going to put you on heaps of chemo on the off chance one or two of these cells take root. It's sort of like antibiotics... if you overuse them when you don't need them, then when you do need them they aren't as effective.
So, after surgery, I believe they call it "adjunct" chemotherapy where they bombard us with as much chemo as possible. The reason being, it's after surgery where cells may be set loose and are floating through our blood streams, so let's kill them all off if possible. When a cancer reoccurs, then it means some of these pesky critters actually managed to survive, so this time around, we hit them with some specific chemo. And we will keep that up with maintenance chemo, or every now and again up the dosage... but what we don't want to happen is that our bodies become immune to the chemo treatments during a time when there's no reason to be getting the full ammunition. We want to save that for the day when we might need more.
Does that make sense?
Huggggggs,
Cheryl0 -
port access by non-onc nursesmsccolon said:port access for colonoscopies
you are SO lucky! The only people that access my port are the onc nurses! They go at my veins in my hands which are VERY hard to find and there is always pain involved! The onc nurses say the nurses at the hospital just don't know how to access it properly and thus don't try. They did say one time that I could always come to them for access, then onto the hospital, and that's probably what I will do next time.
mary
I was told the reason that only the oncology nurses use the port is that they have specialized training and only nurse with that training are allowed to use it. It was implied not stated that it's a legal issue.
Regarding keeping the port in - I did and a year later I'm using it again and very thankful it was left in. I'm stage IV with my first recurrence. Too me the hassle of getting stuck in the arm (I have deep veins, hard to find) every month at the local clinic far outweighed the hassle of going to the oncology clinic every month. It's really up to you and how comfortable you are. Traci0 -
Makes SenseCherylHutch said:Avastin
Beth, I'm certainly no doctor, nor do I play one on TV, so these are very good questions to ask your doctor.
Mary's description of Avastin is very good and that could be exactly why you haven't been given Avastin. If the purpose of the drug is to stop the cancer's ability to create a blood supply... at this point you don't have a cancer, hence no blood supply to stop. With your surgery, that removed the known cancer... and now, you are on the oral chemo, which is more like a maintenance to be able to kill off any potentially individual cancer cells that may be floating about.
My "blunt" radiologist told me that, as a Stage IV cancer, there's a very high chance that I have individual cancer cells ... but where they will land or if they will even take root is anyone's guess. Keeping in mind, EVERYONE has cancer cells in their bodies... it's whether or not they take root that is the problem. So the doctors are not going to put you on heaps of chemo on the off chance one or two of these cells take root. It's sort of like antibiotics... if you overuse them when you don't need them, then when you do need them they aren't as effective.
So, after surgery, I believe they call it "adjunct" chemotherapy where they bombard us with as much chemo as possible. The reason being, it's after surgery where cells may be set loose and are floating through our blood streams, so let's kill them all off if possible. When a cancer reoccurs, then it means some of these pesky critters actually managed to survive, so this time around, we hit them with some specific chemo. And we will keep that up with maintenance chemo, or every now and again up the dosage... but what we don't want to happen is that our bodies become immune to the chemo treatments during a time when there's no reason to be getting the full ammunition. We want to save that for the day when we might need more.
Does that make sense?
Huggggggs,
Cheryl
Yes Cheryl,
It does makes sense and thank you. It eases my mind too, so again thank you. I just want to make sure we are doing all we can, I am not sure I could handle this beast coming back, even though its in the back of my mind and will probably always be there.
Thanks Hun.
Beth0 -
highly personal
I had my port removed as soon as I finished treatment. Although I knew I had a chance of recurrence, I wanted to remove that 'reminder' of my treatment days, and live a 'non-treatment' life.
OK, so, I did that twice! I'm now on my third port. And I'm going to leave it in when I finish my current treatment. Maybe I'm a slow learner! But I'm also just feeling more comfortable about having the port -- it is fine. (And I want to avoid a 4th installation!).
Tara0 -
where did they put the third?taraHK said:highly personal
I had my port removed as soon as I finished treatment. Although I knew I had a chance of recurrence, I wanted to remove that 'reminder' of my treatment days, and live a 'non-treatment' life.
OK, so, I did that twice! I'm now on my third port. And I'm going to leave it in when I finish my current treatment. Maybe I'm a slow learner! But I'm also just feeling more comfortable about having the port -- it is fine. (And I want to avoid a 4th installation!).
Tara
Did you have it reinserted near a prior insertion? I had my first one in on the left, this one is on my right. Just wondering
mary0 -
Thanks for the responses....KierstenRx said:To remove or not to remove, that is the question.....
Hi Elisabeth,
Congrats on finishing your treatment!!! To remove or not to remove that is the question. I think it really depends on the oncologist and the patient. My oncologist wanted my port to stay in for 2 years. It did not give me any problems and actually was kind of a security blanket the first year or so after treatment. I did not intend to have to use it again, but I wasn't ready to part with it. My port was very good to me and I had a lot of respect for it. Anyway my 2 year mark was in Septmeber (stage III rectal cancer, age 32) and on December 1st we parted ways. Just a small scar is my only reminder.
It's a personal decision and there is no right or wrong. Don't take it out prematurely if you are not ready. Removing it right away does not ensure that something won't recur or leaving it in does not mean that you are not positive for your future health.
Kiersten
I've decided to leave mine in just in case. I was also diagnosed at the age of 32 with stage III cc. Although I only had one lymph node "mildly" involved, I did have venous invasion which is considered pretty bad prognosticaly.
Anyway, I'm now in the watch and wait period and I'm sure I'll be biting my nails for the next 3 years (if nothing shows up before then).
My Mom had her port removed immediately after she underwent chemo for breast cancer. That was over 20 years ago and luckily she hasn't had the need for one since. She didn't want any reminder of what she went through - which I can understand.
Thanks for the responses!
Elizabeth0 -
port
Hi Elizabeth,
My onc said she was superstitious and wanted me to keep my port in for two years after I last had chemo. It really wasn't that bad. I found that I could gradually stretch out the time between flushing and at the end was going about every 3 months. The only part that bothered me was the little tube crossing my collarbone- it seemed to itch. Just had the port removed a month ago and don't miss it (but still have a little itch there- probably just a guy thing).
****0 -
This comment has been removed by the Moderatorvinny3 said:port
Hi Elizabeth,
My onc said she was superstitious and wanted me to keep my port in for two years after I last had chemo. It really wasn't that bad. I found that I could gradually stretch out the time between flushing and at the end was going about every 3 months. The only part that bothered me was the little tube crossing my collarbone- it seemed to itch. Just had the port removed a month ago and don't miss it (but still have a little itch there- probably just a guy thing).
****0
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