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Port Removal

Gwfl's picture
Gwfl
Posts: 27
Joined: Jun 2018

I have been in remission just over one year.  My last scans were completely clear and my doctor suggested removal of my Port.  To me it feels premature right now.  I'm thinking he may just not want to tie up his staff having to flush it every 6 weeks.  Although I'm NED, psychologically it does not feel like it's over and the battle can return anytime.  Maybe in time I'll trust the term "remission" more.  Has anyone thought this way?

If I remove it is the doctor's office less preferred then a hospital sitting?

Gwfl's picture
Gwfl
Posts: 27
Joined: Jun 2018

My searching past comments produced some answers that have been helpful.  One question that came up for me is were early ports larger then todays?  Wondering how they may have changed over the years?

peanut butter's picture
peanut butter
Posts: 18
Joined: May 2020

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's picture
yetti
Posts: 7
Joined: May 2019

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!  

peanut butter's picture
peanut butter
Posts: 18
Joined: May 2020

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's picture
Almost70now
Posts: 34
Joined: May 2019

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3440
Joined: May 2012

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,

peanut butter's picture
peanut butter
Posts: 18
Joined: May 2020

Max,

  I grew up in Md. on a farm in the country. I can remember tadpoles that were huge buggers. We'd keep them in buckets til the tails were almost gone and then turn them loose. Biggest bullfrogs you ever seen. I now live in NC and it's frog city here, especially after a hard rain. We have house frogs as well. They are little green sticky footers that hang around the outside night light and live off bugs. Can't forget the little geiko lizards. Sure you got them in SC as well. Always wondered if the house frogs were tadpoles or where they came from.

  See what happens when almost 70 says her port looked like a tad pole. LOL

Gwfl's picture
Gwfl
Posts: 27
Joined: Jun 2018

I would have to think that the treatment facility would want to take it out so they don't have to service it so often costing them money and time.  I'm leaving mine in at least through my next scans 6 months from now.  My cancer center is the only one that will use it, all my hospital stays and other blood draws they wouldn't use it....only my cancer center and even then not when we did contrast scans in house.  Only the infusion nurses used it.

Another aspect is that I like the damn thing....almost like a symbol of courage and perserverance.  It has served me well and I always enjoyed having the infusion nurses attend me....always knowledgeable, sweet and attentive.

peanut butter's picture
peanut butter
Posts: 18
Joined: May 2020

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3440
Joined: May 2012

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).

peanut butter's picture
peanut butter
Posts: 18
Joined: May 2020

That's what I mean. Max always has an answer. It my be informative or it may be funny, but he always responds with something to keep us interested. I remember when I first started reading these post how some of the threads would go on forever. Somebody always jumped in with a comment or two. It was interesting to read. Used to see a lot of joking and friendly ribbing as well. Some reason don't see that anymore. Don't know what happened to those times. Must have been 3-4 years since I have seen post like that. I can't remember all the names of those people that used to help carry things. I actually looked forward to clicking on the site and sometimes there would be 10-15 new post a day. Now when I click on I see where there are days upon days where no one has posted anything. Makes me wonder where all those posters went. I am sure you have noticed the voids in post. To much seriousness and it makes it a little depressing. We are all in this Lymphoma boat together in one way or the other. A little joyfulness can certainly make a big difference and go a long way. We can't give medical advice just useful suggestions (a lot of members like yourself do a lot of useful research and have life experiences) because we are not Drs., but we can certainly cheer each other in other ways. Of course everything I am saying is just my opinion only. Hope I am not speaking out of turn here. Not trying to offend anyone and sorry if I did.Tongue Out

yetti's picture
yetti
Posts: 7
Joined: May 2019

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's picture
yetti
Posts: 7
Joined: May 2019

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 ! 

 

peanut butter's picture
peanut butter
Posts: 18
Joined: May 2020

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.

ShadyGuy's picture
ShadyGuy
Posts: 511
Joined: Jan 2017
peanut butter's picture
peanut butter
Posts: 18
Joined: May 2020

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.

ShadyGuy's picture
ShadyGuy
Posts: 511
Joined: Jan 2017

Earnie Ford, Joan Baez and several others have versions. I believe Earnie actually sang it on the "I Love Lucy" show as Lucy's "cousin Earnie" from Tennessee. He was actually from Bristol TN. This song and "16 Tons" were among his most poplar songs. "16 Tons" has sold over 23 million copies. Most younger people have no idea who Earnie Ford was.

https://www.youtube.com/watch?v=ItVmpBr7KLE

https://www.youtube.com/watch?v=jIfu2A0ezq0

dtat67's picture
dtat67
Posts: 28
Joined: Oct 2018

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!

peanut butter's picture
peanut butter
Posts: 18
Joined: May 2020

I've had my port for 10 years. Only had it block once. Nurse did same thing with me. She said raise your arms and a bunch of other acrobatics. Then another nurse came eover and everything went fine. This was about a year ago. Don't know if because the nurse was new or what happened. I have heard after 5 years if no reaccurance of desease it was less likely to come back but there was no real gaurantees. What kind of lymphoma did you have?  Mine was NHL follicular. Found while having a routine yearly urology exam with an xray.

dtat67's picture
dtat67
Posts: 28
Joined: Oct 2018

Mine was in my right sinus no lymph node involvement. 6 RCHOP Chemo and 35 IGRT Radiation. Maybe my port will work next time? I had planned to do like you and keep it indefinately. Don't get me wrong, the Doc said after 2 years it was less likely to come back but who really knows. I can say that I have been fortunate in that I have had few if any side affects that I can feel but my RBC and Hemoglobin is low (Anemic) and not as much stamina as before but I am close to 70 so my age could be a factor?

I was told to just leave after the visit and the scheduler would contact be for future appointments (because of the virus). I'll have to see if they schedule me for the normal interum port flushes? They had been scheduling every 6 weeks but the nurse said they were now saying every 3 months? Just wondering if the long time in between had caused by blockage?

peanut butter's picture
peanut butter
Posts: 18
Joined: May 2020

I can remember a past poster named jimwins that had the same diagnosis. He stopped posting all of a sudden. He was one of the older members that used to keep the site going with his wit. I am sure he is just fine but got a little disgusted with the way the post were being handled. Said he was flagged a couple of times, but I do not know why. I am 71 years old and notice I do not have the get up and go like I used to have 10 years ago. RBC is down slightly, but Onc said still in normal range. As far as time lapse causing blockage in the port I do not know. If I remember correctly I would get my port flush every 3 months in the beginning and about a year later it went to every 2 months. I will ask the nurse next time I get my port flush and see if I can get any info. In the meantime some of the members may have info on that. There are still a few well informed posters that may jump in. (max, po, shady)

Lym999
Posts: 12
Joined: Feb 2020

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.

peanut butter's picture
peanut butter
Posts: 18
Joined: May 2020

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.

peanut butter's picture
peanut butter
Posts: 18
Joined: May 2020

When I first started reading the post would you believe there were some people who never had a port. They got everything thru their arm veins.  The veins had to be switched or alternated after several uses some would say. I can't imagine going thru that, but to each their own I guess.

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I had my port put in Jan 2015. The first R-Chop treatemt was without the port. There was a hang-up with insurance. Once I got it I loved it. I hate needles. The idea of not getting stuck with a needle a gazillion times was heaven for me. I had a bunch of tests and that one round of chemo before the port. Timing was good because the vein in the left arm went into permanent hiding. Once I was in remission I had 2 years of Rituxin. About a year or so after I was done with Rituxin I had the port removed. I did miss it for a while. 

As to those not getting a port. I had a co-worker diagnosed with Multiple Myleloma around 2008. Longest remission was maybe a year. Haw many types of chemo plus 2 stem cell transplants.  remember him sayig they couldn't find veins in his arms anymore and were using his feet. 

After my first 2 chemos (remember 1 without and 1 with a port) I can't imagine how he got thorugh all of what he went through withotu a port!

ShadyGuy's picture
ShadyGuy
Posts: 511
Joined: Jan 2017

I hated my port even though it made the treatments much easier. I say yes, definitely get a port for chemo. For R, not so much. I had literally dozens of R infusions without a port with no issues. I had my last chemo (fludara et al) in June 2018 and had the port removed in August. I knew there was a risk I would need a new one but that was a chance I was willing to take. Everyone looks at it differently I guess. And of course we do not all have the same veins. Mine are large and easily found.

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