Port Removal or Not

PrimaryX3

If I may, I'd like to give a little background before I ask my question. I was treated for breast cancer in 2003 - chemo, lumpectomy and radiation. I developed lymphadema about a year after treatment. I am not allowed to have any vitals taken on my right side and cannot have blood drawn from my right arm. I didn't have a port during my breast cancer treatment and the veins in my left arm are not in good shape.
In November of 2008 I was diagnosed with tongue cancer and had chemo and radiation. In September of 2009 I had my right kidney removed due to cancer - each of the 3 cancers were primary. Due to the damage done to my tongue and throat during radiation, the doctors had trouble intubaing me for the kidney surgery - it took 3 tries. I almost died during that attempt and ended up with stomach acid in my lungs. Ten days later they tried again and were successful in removing the kidney. I was intubated while 'awake' this time.
That is getting off track! My question is about my port. One of my oncologists thinks I should have it removed asap. I'm a little reluctant to have it done. First of all, I'm afraid if I get rid of it I will need it again. Secondly, I'm nervous about anesthesia of any type after the kidney fiasco and finally, with the condition of my veins, I hate to get rid of it. Please let me know what you think and for those of you who had a port removed, how difficult a procedure was it?
I have only been coming to this site for a few days but I find it so informative! I can't say how many times I've read something and thought - THAT IS JUST WHAT HAPPENED TO ME.
Thanks in advance for your help and all your posts.
Theresa

cwcad

I had mine way over a year
I had mine way over a year and I had to beg the doctors to take it out. It was a control issue for me. In retrospect I do not know why I was in such a hurry to take it out. It never did anything other than help me. Just keep getting the port flush done at regular intervals. This should allow the service life of the port to be a long time. Unless it is in your way or bothering you in some other fashion why take it out?

PrimaryX3

cwcad said:

I had mine way over a year
I had mine way over a year and I had to beg the doctors to take it out. It was a control issue for me. In retrospect I do not know why I was in such a hurry to take it out. It never did anything other than help me. Just keep getting the port flush done at regular intervals. This should allow the service life of the port to be a long time. Unless it is in your way or bothering you in some other fashion why take it out?

Good Point!
You are right. It doesn't bother me at all. In fact, I hardly ever think about it - unlike the feeding tube - glad that is gone. I don't mind the monthly flushes and think I will keep it where it is. Thanks so much.

Kent Cass

PrimaryX3 said:

Good Point!
You are right. It doesn't bother me at all. In fact, I hardly ever think about it - unlike the feeding tube - glad that is gone. I don't mind the monthly flushes and think I will keep it where it is. Thanks so much.

Port remains
Had my Port put in last January, so it's been in my chest almost a year. My Oto told me I'll likely have it for three years. And, yes, I do the once/month flush, but it is not that big of a deal. Recently had to have a blood test on account of my thryoid- they got the blood via the Port. Yes, it is a nuissance, but I also have the feeding tube put into my gut last January, and the Port is the lesser nuissance of the two. If you feel you should keep the Port- then keep it= YOU are in charge of YOU.

kcass

PrimaryX3

Kent Cass said:

Port remains
Had my Port put in last January, so it's been in my chest almost a year. My Oto told me I'll likely have it for three years. And, yes, I do the once/month flush, but it is not that big of a deal. Recently had to have a blood test on account of my thryoid- they got the blood via the Port. Yes, it is a nuissance, but I also have the feeding tube put into my gut last January, and the Port is the lesser nuissance of the two. If you feel you should keep the Port- then keep it= YOU are in charge of YOU.

kcass

I AM in Charge of Me!
Kent,
Those are words I'm going to try to live by! I'm 64 and of the generation where I do what doctors tell me to do - even when they are young enough to be one of my children! With 5 doctors treating me now, that can be difficult. I know this old body better than anyone and I am going to do what I want to do after all is said and done. I'm meeting with my radiologist for a check-up in a couple of hours and after listening to him carefully, I am going to make my own decisions.
Thank you for making me realize who is in charge!
I hope you are doing well and continue to win this battle.
Theresa

Hondo

PrimaryX3 said:

I AM in Charge of Me!
Kent,
Those are words I'm going to try to live by! I'm 64 and of the generation where I do what doctors tell me to do - even when they are young enough to be one of my children! With 5 doctors treating me now, that can be difficult. I know this old body better than anyone and I am going to do what I want to do after all is said and done. I'm meeting with my radiologist for a check-up in a couple of hours and after listening to him carefully, I am going to make my own decisions.
Thank you for making me realize who is in charge!
I hope you are doing well and continue to win this battle.
Theresa

Theresa

I agree with you, we have to make our own choice in our health. I love all my doctors but if I had listen to them and done what they wanted me to do I would be dead. My ENT told me that I am the worst of patient because I don’t not listen to his advice, I told him that is because you made me deaf so I can’t hear. He wanted me to treat for a cancer he thought was there but was not 4 year ago.

We need our doctors but we also need to know when to tell them No. I now make all the calls on my treatment and have one of the most wonderful Oncologist doctors there is who understand and works with me on my health issues.

Take can God bless

soccerfreaks

Any port in a storm
You have certainly had a rough row to hoe, Theresa, and I can understand that (during my last surgery, a lobectomy in early '08, my right arm was starting to feel like cardboard before they finally went with a port -- to their credit, they had not anticipated that my original surgery would turn into a staph infection that kept us on our toes and in the hospital for nearly a month).

But you are paying your doctors to help you make decisions, and they make them for good reasons. I suspect in this case that they have been concerned from the start that a port is a rather common source of some rather debilitating infections. Given the description of your other issues, Theresa, I would bet that your docs have been on pins and needles (pardon the unintended pun) for quite some time in that regard.

I support the notion that we are in charge of our bodies, as others have indicated, but I also suggest that we pay these ladies and gentlemen big bucks to help us make decisions, even to make decisions for us from time to time, and if it were me I would need very strong reasons to disregard the recommendation of one my trusted doctors.

If you are ignoring your doctor's advice because you do not trust him/her, then you should seek advice from another doctor. If, instead, your reticence is based on fear, my inclination would be to listen to those you pay to help you make these calls, calls they make with your best long-term interests in mind, popular notions about owning our bodies aside.

If you re-read cwcad's opinion, you will note that while he wondered why he was so anxious to get rid of the port in hindsight, the underlying theme, unintended as it may be, is that he now believes he should have listened to his doctors.

Best wishes with whatever direction you take.

Take care,

Joe

PrimaryX3

Hondo said:

Theresa

I agree with you, we have to make our own choice in our health. I love all my doctors but if I had listen to them and done what they wanted me to do I would be dead. My ENT told me that I am the worst of patient because I don’t not listen to his advice, I told him that is because you made me deaf so I can’t hear. He wanted me to treat for a cancer he thought was there but was not 4 year ago.

We need our doctors but we also need to know when to tell them No. I now make all the calls on my treatment and have one of the most wonderful Oncologist doctors there is who understand and works with me on my health issues.

Take can God bless

Old Dog Learning New Tricks
Hondo,
I am a very old dog learning so much from this board. You, my friend, are a very, very wise man. I know you walk hand in hand with God and that has brought you to the place you are in today. I taught for 31 years before cancer and retirement and loved every moment of helping 'my kids' get it. Now it is my turn to listen and learn. Thank you so much for coming into my life. I hope and pray that you continue to be well.
Theresa

PrimaryX3

Hondo said:

Theresa

I agree with you, we have to make our own choice in our health. I love all my doctors but if I had listen to them and done what they wanted me to do I would be dead. My ENT told me that I am the worst of patient because I don’t not listen to his advice, I told him that is because you made me deaf so I can’t hear. He wanted me to treat for a cancer he thought was there but was not 4 year ago.

We need our doctors but we also need to know when to tell them No. I now make all the calls on my treatment and have one of the most wonderful Oncologist doctors there is who understand and works with me on my health issues.

Take can God bless

Old Dog Learning New Tricks
Hondo,
I am a very old dog learning so much from this board. You, my friend, are a very, very wise man. I know you walk hand in hand with God and that has brought you to the place you are in today. I taught for 31 years before cancer and retirement and loved every moment of helping 'my kids' get it. Now it is my turn to listen and learn. Thank you so much for coming into my life. I hope and pray that you continue to be well.
Theresa

PrimaryX3

soccerfreaks said:

Any port in a storm
You have certainly had a rough row to hoe, Theresa, and I can understand that (during my last surgery, a lobectomy in early '08, my right arm was starting to feel like cardboard before they finally went with a port -- to their credit, they had not anticipated that my original surgery would turn into a staph infection that kept us on our toes and in the hospital for nearly a month).

But you are paying your doctors to help you make decisions, and they make them for good reasons. I suspect in this case that they have been concerned from the start that a port is a rather common source of some rather debilitating infections. Given the description of your other issues, Theresa, I would bet that your docs have been on pins and needles (pardon the unintended pun) for quite some time in that regard.

I support the notion that we are in charge of our bodies, as others have indicated, but I also suggest that we pay these ladies and gentlemen big bucks to help us make decisions, even to make decisions for us from time to time, and if it were me I would need very strong reasons to disregard the recommendation of one my trusted doctors.

If you are ignoring your doctor's advice because you do not trust him/her, then you should seek advice from another doctor. If, instead, your reticence is based on fear, my inclination would be to listen to those you pay to help you make these calls, calls they make with your best long-term interests in mind, popular notions about owning our bodies aside.

If you re-read cwcad's opinion, you will note that while he wondered why he was so anxious to get rid of the port in hindsight, the underlying theme, unintended as it may be, is that he now believes he should have listened to his doctors.

Best wishes with whatever direction you take.

Take care,

Joe

Food for Thought
Joe,
You have certainly given me something to think about. I had no idea that my port could be a source of infection. I certainly don't want to go there! I see 5 doctors for my various cancers. The oncologist who suggested I have the port removed never said why - just that IT WAS TIME. My job should have been to ask and I didn't. I will certainly do some research before I see the next doctor on my list and not only bring up the subject but ask why she feels it should or should not go.
I have been so amazed at all the information I have received through this group. I wish I had come here earlier!
Hoping you are well and thanks for taking the time to respond to my question.
Theresa