Port Removal

That's a good question. I had my port installed a little over 10 years ago. Still got it. I went into remission within 5 months and been NED ever since. I have mixed feelings about having it removed. Actually the Onc. never mentioned it. It does act as a security blanket in a way. I had NHL. Follicular with no night sweats or weight loss. It was stage 4 as most are.  Found during a routine urology exam. Was told if you are going to have cancer Lymphoma is the best. Sounds crazy I know.  

yetti said:

Port removal

Hello,  I am a stage 4 survivor of endometrial cancer.  I have been in remission a year April. 2020,   I have had my port since July 22 of 2018. It was put in before chemo, but not before I was already in the hospital 5 days for PE. With an Iv with blood thinner med and around the clock blood draws,! I am a "hard stick". For blood draws. and most lab techs can't do it without sticking me several times ! I've been this way most of my life.,  I get very anxious about any blood draw not using this port!   I also have them access this port for ct or pet scan even a colonsopy.that I had.!  I keep the port Bc I'm a whimp over blood draws if it weren't for that I would probably get the port removed !  I will not do chemo ever again!  

The same thought has gone thru my mind many times about doing chemo again. At one time I probably would have, but after thinking about it for all these years I don't think I would ever go thru it again. The memories of being drained of strength and sitting up all night because of the prednisone and worried if this chemo is going to work was just to much. Sitting in the chemo chair for hours at a time, etc. etc. was so over whelming for me. Some may say it's better than the alternative, but I wonder, Is it. Putting family members thru a lot of worry as well. So much goes thru the mind while we are going thru this. We are scared to death and wonder where will this all lead. 10 years later I still wonder if or when it may return. At least that's what was happening to me. I am sure there are a lot of people here that feel the same, but sure so many that feel the opposite. Just expressing the way I feel is all I am saying. I have been reading the post for about 10 years and so many have gone thru a lot worse experiences than I have and I salute them all.

Almost70now said:

Port

I had a power port implanted in June 2010. I kept it in until 2017 with no problem and went in for a flush once a month. I relapesed in 2016 and needed Rituxan infusions once a week for a month and was very thankful I still had it in. One year later we started having problems with my monthly flush so my doctor decided to remove it and said we would just put a new one in if I relapsed again. So far so good with no relapse since 2016. My port looked like a small tad pole and was purple. Never had any problems with it for 7 years.

FNHL-stage3-grade2-type A-diagnosed June 2010

Almost,

I bet many readers today don't even know what a tad pole is.  Growing up in Charleston swamps, of course I know well; we used to catch a bucket full and watch them grow.   I'm glad to hear youare well,

There you go. Would you believe in all my years reading the post I have come across a couple of the members that have even given their port a name. I am sure a couple of the old time posters have seen those post as well. I say old time members because I can only think of 2 members that still post since I first started reading 10 years ago and both of them have already responded to your post. (In my 10 years of reading the post I only know of one member that has passed away on the lymphoma site. I don't know if it was from the lymphoma or something else. From what I hear most people die with lymphoma  not from lymphoma.)Anyway they both have fine qualities and a lot of experience and can help guide you. Max has seemed to become the go to person on the site and well deserved for all he has been thru. I look forward to reading his post. He has helped me thru this journey of "what ifs" many times. Don't blame you for wanting to keep the port for as long as you can. It can become a real security blanket.... PS: Just remembered there is another old time poster named Po that is very knowledgeable as well.

peanut butter said:

PORT

There you go. Would you believe in all my years reading the post I have come across a couple of the members that have even given their port a name. I am sure a couple of the old time posters have seen those post as well. I say old time members because I can only think of 2 members that still post since I first started reading 10 years ago and both of them have already responded to your post. (In my 10 years of reading the post I only know of one member that has passed away on the lymphoma site. I don't know if it was from the lymphoma or something else. From what I hear most people die with lymphoma  not from lymphoma.)Anyway they both have fine qualities and a lot of experience and can help guide you. Max has seemed to become the go to person on the site and well deserved for all he has been thru. I look forward to reading his post. He has helped me thru this journey of "what ifs" many times. Don't blame you for wanting to keep the port for as long as you can. It can become a real security blanket.... PS: Just remembered there is another old time poster named Po that is very knowledgeable as well.

PB,   

I'm ex-Navy.  When a doctor or anyone else asks what the indentation is where my port used to be, I tell them "my port hole."   It is on the port side also (left).

Its hard to believe that they would not use the port for blood draws. Or ct ?   I had that terrible week in the hospital with PE. They waited till I was in hospital 5 days before they put in port and IVC filter, after that was in I told the dr I will not allow blood draws without going through port and had her write those instructions on a large white sheet of paper signed by her. The next morning the tech came in not equipped to acess port to draw blood. I said only through port are you prepared. ?  He wasn't. I didn't allow blood draw. I pulled the sheet up to my neck. And pointed to the drs note taped to the white board! He shook his head and left. I guess I got their attention the nurse came in to acess the port I was already black and blue from my wrists to elbows  from around the clock blood draws. 

yetti said:

Hi peanut butter !

You know I feel the same way as you do!  I had a younger sister age 38. who had a Cancer of unknown orgin, thought ovarian or colon but undetermined. She lived 6 mths after Dx. She went through chemo and was very sick,  She also lost her hair to chemo!  I promised myself that I wouldn't seek treatment if I ever got cancer, well fast forward to 2018 from 2003  I was Dx with stage 4B  endometerial cancer I didn't want to do chemo! I was originally told I needed a hysterectomy but after that they did a ct Scan and determined it had metastasized to my lungs, and a 12-15 cm tumor in my pelvis  and involved an Ovary!  I didn't want to lose my hair or be sick from chemo, I just wanted to die it  honestly would have been easier !  I wanted to do my bucket list , hospice and a head stone.  I dodged phone calls for 2 weeks from Gyn onc trying to get me to chose a onc to get chemo! I finally picked up phone one day and told them I'm not doing chemo and leave me alone, they called my husband, got the number from prior paperwork I filled out!  So much to my denial and anger I did chemo aug to nov 2018  lost hair  felt sick  wanted to die  however I got through it and ive been NED since April 2019  but I won't repeat the treatments IF i have a recurrence of cancer or a new cancer appears!  DONE ! 

 

Yes, it is a hard decision to make. Most people do not realize how alone we feel when we get ANY cancer diagnosis. We feel so alone and in a world of our own. We may have friends all around, but in our minds we are alone. Thoughts of things go thru our heads that we never thought of before, like what will I do now, how long will I live, how bad is the chemo going to be, etc, etc. I was taking prednisone and at 4 o'clock in the morning I was dancing on the ceiling. That is when most of the thoughts went thru my mind. I thought about it all the time, but in the wee hours is when I thought about it the most. Nobody is ready to die, at least I wasn't. I have been fortunate and been NED for 10 years now and thankful for it. Still in the back of my mind is, WHAT IF !!!!. I can say there have been a lot of advances in the cancer field thru the years, at least that is what I hear and hope to be true. I do not do a lot of research because most of the info is not updated and can be scary. One of the first things I saw when I found this site is a member strongly suggested to stay away from those computer sites. Remember we are all different with our cancers and responses to it. We all are in the same boat with the diagnosis, but responses are different. 

RCVP was my chemo.

I heard that song as a kid many times. First time I heard it was Tennessee Ernie Ford on his tv show. I could never find it on any of his albums. Later a song by The Kingston Trio called The Reverend Mr. Black had those lyrics. It a song that sorta sticks with you. Can't tell tell you how many times I thought of that song 10 years ago. Now that I read your post guess what song will stick in my head for the next 2 weeks LOL.

I went in for my port flush and to see the Oncologist today only to find out that my Power Port was "clogged". I had been scheduled for a port flush 4 weeks ago but it was canceled because of the Covid-19 situation. I was told just wait until my next scheduled blood draw appointment. They could inject the heparin but couldn't draw blood. It has been 18 months since my chemo was finished. The Nurse had me wave my arms, tilted me back in the chair, move around a lot but to no avail.

I asked the Doc if I should go ahead and get it removed. He sadi that to wait until around Sept. That will be my 2 year anniversary since my NHL diagnosis and if things were cool then the likelyhood of a recurrance would be less likely.

So hoping for another 6 months of remission and then I guess I'll get removed. I had planned on keeping it for several years just in case but it is what it is. Wonder if the delay on the flush might be responsible?

Peace and Love!

Lym999 said:

Port Removal

I just finished my last treatment in March and hope to have my port out as soon as possible. I am scheduled for another CT scan in late August and I expect my oncologist will remove my port shortly after that. I can attest to the idea of how feeling alone when you have cancer. For me, it felt like being on an island all by myself.

I know that feeling all to well. No matter what you do that feeling would not go away. I am waiting for my onc. to suggest removing my port. Don't know why he hasn't as of yet. I have some mixed feelings about it.