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YAY! Port removal.

Quilter_1's picture
Quilter_1
Posts: 109
Joined: Mar 2019

Had my port removed one week ago today.  Everything went well.  I finished treatment in March of 2019.  All is well.  Now, if only this damn virus would go away, I want to travel.

Molly110
Posts: 190
Joined: Oct 2019

Congratulations!!!

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1773
Joined: Jun 2015

Congrats! I was so happy to get mine out as well. It bothered me the entire time I had it. The medical team thought it might be hitting a nerve.

I think we all want to be back to normal! I have a feeling we won't see normal for a long time though..... And, it's going to be a different normal....

Love and Hugs,

Cindi

Quilter_1's picture
Quilter_1
Posts: 109
Joined: Mar 2019

Hi Cindi,  my port never really bothered me, getting it flushed was sometimes inconvient. It did it's job, and, I'm really glad that I had it, but it's job is done.  I hope that I never have to have another one put in.  I feel great and have been getting good checkups and scans and am hopeful that this chapter of my life is closed forever.

Maxster
Posts: 70
Joined: Apr 2020

I was happy to see someone report on their port removal.  I hated it and always felt it on me.  Even now after its removal I can feel it and the scar it left.  It was such a reminder of my disease that I could not wait to get it out.  I had it removed just a few months after my last chemo. I know they wanted me to wait a bit but I felt like that meant I was waiting for a recurrence.  So I had it removed.  I hope this is the last of it.  I don't know why it bothered me so much but it did.

 

Molly110
Posts: 190
Joined: Oct 2019

Maxster, yes! That's it exactly. Leaving it in, for me, feels like waiting for a recurrence.          

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2888
Joined: Mar 2013

Great news!  So happy for you!

Forherself's picture
Forherself
Posts: 533
Joined: Jan 2019

Another milestone reached.   Happy for you.  

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

I remember when you had it put in! How time flies, and what a blessing we are all here to celebrate with you.

I had mine removed in December, doctor's orders.  It never bothered me a bit - never knew it was there, and liked going to see everyone at hem/onc when I got it flushed.  But got a new doc and she said, "out it comes."  The doc who removed it was unfortunately not as skillful as the one who put it in, and I ended up with a massive hematoma. I was the darkest shade of purple you could imagine from my neck down to include my whole breast and over to the middle of my chest.  It took months to go away and I still have a small lump under the incision and a very bumpy scar. I kind of wish I had just kept the port!

Quilter_1's picture
Quilter_1
Posts: 109
Joined: Mar 2019

Thank you all for your wonderful support. No understands these small milestones quite like you do.

jan9wils's picture
jan9wils
Posts: 156
Joined: Mar 2017

Hooray!

Yeo's picture
Yeo
Posts: 27
Joined: Nov 2019

I just finished chemo in the middle of April and plan to have mine removed after my 6 month scan in November.  Very exciting stuff!

vrsecond
Posts: 9
Joined: Jun 2019

I am looking forward to the day my oncologist says I can have the port removed.  It has been in there for a year and I have to get it flushed every 6 weeks and now with COVID19 they do a nasal swab every time I go in and I hate that more thatn everything else.  Does anyone know how they remove the port it is an outpatient surgery are you asleep I cannot recall how it was put in I want it out thanks

Molly110
Posts: 190
Joined: Oct 2019

Port removal varies from medical center to medical center. Some use "twilight sedation" as a matter of course. Some use no sedation and only numb the area. Some decide what to do through a discussion between the doctor and patient. I wish all did the latter. Unfortunately, mine offers only the numbing with no sedation, and I've delayed having my port removed as a result. 

My advice would be to ask for what you want and advocate for it. There was a recent discussion on the board about ports, and many women reported that their port removal was a snap. If your doctor wants you to keep your port for a while longer, you can ask about having it flushed less often. Due to covid, my cancer center delayed my flush for weeks, which they told me was perfectly safe. I looked it up, and there are good studies that say 3 months is fine. You could ask your doctor about those specific studies and see if you can get your schedule changed. 

vrsecond
Posts: 9
Joined: Jun 2019

Thank you for the reply. I did ask her she said she likes to leave the port in for a year from last pet scan which means June 2021 so I am bummed.  Yes I delayed the flush because it is a hassle every 4-6 weeks and they do the nasal swab for covid every time and that is more annoying than the flush.  I guess it is a psychological thing with me Ijust want it out but she suggests leaving it in oh well

Tamlen's picture
Tamlen
Posts: 307
Joined: Jan 2018

As Molly10 said, it varies by hospital and doctor. I had my port taken out 18 months after chemo because it hadn't been put in the right place originally and was starting to move down my chest wall. I had numbing only, no other sedation or anxiety drugs, and chatted with the surgeon removing it the whole time he worked. It was easy, no pain, healed quickly, and I was very glad to have it out. I hope yours is this easy whenever the time comes!

Maxster
Posts: 70
Joined: Apr 2020

I could not stand the port.  It was like I was waiting for recurrence.  Plus it was uncomfortable.  My oncologist did not say when I should have it removed.  I just said I wanted it out and she went along.  It was a simple procedure with local numbing.  I also talked through the whole thing.  I hope yours goes as easily as mine did.

Quilter_1's picture
Quilter_1
Posts: 109
Joined: Mar 2019

My port was removed using numbing only, was a very easy procedure and took little time.  So nice to have it gone.

Molly110
Posts: 190
Joined: Oct 2019

Yay! Congratulations! How exciting to have your port gone -- another milestone!

 

You are clearly one of the brave ones in that you were comfortble having someone cut into you while you were wide awake. : ) 

yetti's picture
yetti
Posts: 54
Joined: May 2019

I have had my port since July 2018, my last chemo was March 2019 ! I have it flushed every 3 months   I keep it Bc of labs I'm not eastY to draw blood from my arm , several pokes. ive had issues yesrs before Dx , port has never really bothered me !  And Im not keeping it Bc I'm waiting for a recurrence Bc I will not do chemo ever again regardless!

MAbound
Posts: 1122
Joined: Jun 2016

I hope that you are being extra careful about who you allow to access your port. With the line going directly to your heart, sterile technique by someone who knows what they are doing and who appreciates what the risks are each time it's used is critical to avoiding a potentially life threatening complication. It's a big deal and I'd be concerned about letting anyone who's not an MD or chemo nurse touch it. 

EZLiving66's picture
EZLiving66
Posts: 1475
Joined: Oct 2015

I had my port removed after it became infected. I was only able to use it one time - the day after it was inserted. Finally, after trying for months to clear up the infection, they removed it with a numbing agent. Problem was, the skin around it was so degraded because of the infection, they couldn't get it closed. A half-hour procedure turned into a long afternoon as they tried to get it to stop bleeding. Long story short, six weeks after going to a wound care specialist, they got the infection cleared up but I have an awful scar. I've thought of having some plastic surgery to fix it because it still causes me pain but I'm afraid. File this under "if anything could go wrong, it will." LOL

Love,

Eldri

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

Oh, Eldri - you surely have had some Murphy's Law!  My port went in smooth as glass, never a problem the whole time I had it, and then when they removed it I had a gusher under the skin and had a giant goose egg and the most huge purpleblack bruise I've ever seen from my neck to my waist - still have a lump and a scar 10 months later.  I was wishing I'd kept that port!

EZLiving66's picture
EZLiving66
Posts: 1475
Joined: Oct 2015

Wow!! My gusher was outside. The doctor was using my chest as a tray for his supplies and the blood ran under my arms. When they tried to get me to sit up, I was so woozy and it was running into my pants. LOL, I was a bloody mess. But at least I could take a shower! I can't imagine that much blood staying inside my body but outside my veins. 

Love,

Eldri

Primavera's picture
Primavera
Posts: 227
Joined: Mar 2019

Going to start really checking all your port experiences.

I got my timeline for chemo and start on Sept 22 and my new oncologist (breast cancer) said she doesn't think I need one if I have good veins, but I talked to other people who were doing my scans that day and putting IVs in and they all said I should get one.

Oncologist did say that I could get one later on.

Quilter_1's picture
Quilter_1
Posts: 109
Joined: Mar 2019

I LOVED having my port during treatment, never had a problem with it. I used a prescription numbing cream about one hour before it was accessed and had no pain when the needle was inserted.  It was removed about 16 months after my last treatment, my doctor likes to leave them in for a while.  Removal was very easy.  I had numbing injectlions and was awake while it was removed.  Took about one hour from beginning to leaving.  

Primavera's picture
Primavera
Posts: 227
Joined: Mar 2019

I'll probably do without for one or two infusions; I'm going to be new at this. But reading everywhere and here, and talking to hospital staff, I'm convinced I need one. 

I have 4 AC treatments every two weeks, and then one T weekly for 12 weeks and then Herceptin every 3 weeks for a year. I'm afraid for my veins.

But I'll probably be like Maxster and Molly...will want it out as soon as it's done its job. I haven't read anywhere...can it be put back if needed? Probably not the same place.

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

My doctor told me I can get another one if needed.  I'm really regretting getting mine out when I did.

Molly110
Posts: 190
Joined: Oct 2019

Good luck tomorrow, Primavera. I hope everything goes smoothly.  

I still have the port because I'm axious about the procedure getting it removed. I think I will wait until after my next check up since it makes blood draws so easy. 

 

Take care,

Molly

Primavera's picture
Primavera
Posts: 227
Joined: Mar 2019

It went well. It was a short one because it was the Adriamycin with cyclophosphamide. I think it was just two hours. And they put that Neulasta device on my arm.

It's the day after now. I'm feeling OK today, so I've been working, because who knows how I'll feel tomorrow. Keeping a diary of everything. I know this is only the first one and I still have 3 more to go of these before I start Taxol.

I'm most worried about my heart. I start with a healthy heart.

Fridays Child
Posts: 211
Joined: Jul 2019

Glad to hear it went well.  Good luck with the Neulasta!  That blinking light was so weird.  Did they mention to you taking Claritin to combat the bone pain from the Neulasta?  Claritin didn't really help me but I asked if I could use Benadryl and it did help.

 

els19
Posts: 103
Joined: Jun 2014

I kept my port in for 3 years and I don't recommend that to anyone. When I finally had it removed they asked me why I left it in so long as it's easily replaced. I was only numbed when it was removed and felt nothing. It went fast and I had no soreness afterwards. 
Now I'm in a recurrence and had my first chemo without a port and realized how much nicer it was having a port. I do IVs easily. But a port gives you so much more freedom of movement. And I want to keep my good veins and easy IVs. I'm getting a new port put in next week. Hopefully it will be easy!

Goodluck Primavera!

Primavera's picture
Primavera
Posts: 227
Joined: Mar 2019

I had my treatment yesterday. It went well.

They tried to give me trouble about my little freezer. "What is that?" they said at chemo reception fancy office. I told them it was a portable freezer with icing mitts and booties and I need it with me.

I sat on the cushiony chair and looked for an empty outlet they had promised next to my chair and they were all busy. Next time I'll disconnect the TV. I don't need that. My iPad has everything.

But anyway, I still couldn't use my mitts and booties in the freezer. They were too far away and I can tell you these nurses are not going to help me change anything.

Not having a port complicated things. She said she had to start on a vein near my wrist and then go up from there for next treatments. That meant no mitt on my mouse hand! I did put one on the left hand and the booties, but although I had so many still frozen in the non-connected cooler, I couldn't reach them because I was tied to that IV where they were going to inject by hand the three vials of Adriamycin.

I'll be more prepared next time. I could see the importance of the port. It would free me up. When nutritionist and counselor came to pay me a visit before my treatment they were all asking what was that I was wearing...I wasn't amused. A nurse who gave me a call the day before said (when asked about an outlet near my chair) "oh honey, I don't think what you're doing is going to help to prevent neuropathy; the medicine gets inside of you all the way your body."

I just said thank you and waited till next day.

I'm more worried about Taxol and that's why I'm going to get a port. I asked my nurse for the day and she was terrfied I would have 3 more treatments of these, plus 12 weekly treatments of Taxol and 15 tri-weekly of Herceptin. She said this is going to last a long time and I should get one. No worries about flushing it because I'll be there every week and they'll maintain it!

That's my story. It's an experience. Thanks for the good wishes.

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

The first one is always the hardest.  Everything is new and scary.  Just want to encourage you to make some phone calls and see if you can get them to accelerate your schedule for getting a port.  That's a lot of infusions and I can't imagine why they would drag their feet on that.  Also, don't be discouraged - you may get a different chair next time that is closer to your freezer.  Don't worry about help - I changed my mitts and booties by myself every time.  It was a little humorous trying to strap one mitt with another mitt already done but it doesn't have to be perfect.  Also, if you feel some bone pain when the neulasta shot releases tomorrow, know that taking a Claritin may help.  I actually was told to take one the day before and the day of the neulasta shot (I didn't have the patch) and I didn't have bone pain. If you do get some pain, just know that it's temporary as the shot wears off.  Blessings to you.

Primavera's picture
Primavera
Posts: 227
Joined: Mar 2019

It says in my instructions to take a Claritin a day for five days starting on the day of release. So maybe I won't be having the bone pain. Thanks for the blessings.

Molly110
Posts: 190
Joined: Oct 2019

I'm glad the first one is done, Primavera. I don't understand why the nurses were unwilling to help you. 

If you can't wear mitts, don't forget that you can hold a baggie of ice in your hand and keep it cold that way. What frustrates me about the centers that ice because they think there isn't enough evidence to support it, is that many top flight cancer centers -- like MSK -- *do* ice, so it isn't as if the patients who decide to do it are making crazy decisions. We're just choosing to go with another perfectly respectable and well-accepted point of view held by many prominent oncologists and world famous cancer centers. My center didn't do it, but they bent over backwards to help me do it. My bet is that 5 years from now all the best centers will be doing it, but in the mean time, too many women are on their own. 

Once you get the port, the infusions will be so much easier for you. I wish I'd had one at the start, which I realized recently was a year ago this week.

Take care,

Molly

yetti's picture
yetti
Posts: 54
Joined: May 2019

Dear Primivera ,  I would suggest the port before I had any CHEMO. good veins or not it still wears on the the veins. And it starts to require more attempts to get as vein!  I also have them use my port for all labs and ct and pet scan IVs.  even the iv for the colonoscopy I had ! I would not have survived chemo without port, I have mine still since July 22 of 2018 !  thats a lot of IVs on the veins  my chemo was every three weeks ,  If it were me I would do NO CHEMO until I had a port !  

 

Primavera's picture
Primavera
Posts: 227
Joined: Mar 2019

There's more to my story in the previous answers to the other girls.

My nurse-for-the-day told me when I go to get an MRI on Sunday to check for a liver thing that grew, please remind them that they shouldn't use the veins on my right arm, where my arm bends. I asked why. She said because I have another chemo on October 6 and she'll use the same arm and if they poke where I bend my arm, the medicine that she pushes through my wrist might ooze through the hole they made on my arm bend?

That was not good to hear. She said she recommends the port and leave my veins for God forbid in case of an emergency, an accident, something, they could access my veins easily because they won't be damaged.

So I'm getting one. But I have to get the referral on my next visit.

Thank you for the advice.

LisaPizza's picture
LisaPizza
Posts: 340
Joined: Feb 2018

For what it's worth,  for 6 cycles i had two preceding blood draws at the elbow followed at various intervals by chemo in peripheral veins in the hnd or forearm without any concern about the chemo leaking out of the blood draw punctures. I'm sure some of them must have been in the same arm.  I was never warned of that, and I've not heard of it. Doesn't mean it can't happen, and maybe it's particular to your drugs.

Primavera's picture
Primavera
Posts: 227
Joined: Mar 2019

They say doxorubicin is probably the strongest one out there. And maybe it's because she has to do it by hand, not a drip. Don't know. Maybe it's not true. But I'll make sure to remind the MRI people, although she said they should know. And she said my blood work before every treatment will be a poke in the finger. Let's see.

cmb's picture
cmb
Posts: 678
Joined: Jan 2018

I had a port installed before chemo, but for me, the Adriamycin was an injection through the port, not a drip since it needed to be delivered within a certain number of minutes. I know the nurses were always very careful handling this drug since it's a vesicant and, if not delivered correctly, can damage the surrounding tissues. I wouldn't have thought this would still be an issue days after the injection, but since I had it delivered via the port, that may not have been a consideration for me.

Unlike many of the women here, I was told by the oncology nurses to never let anyone access my port except for the chemo treatments. All my blood tests were taken from an elbow vein draw.

By the way, as far as I know I did not suffer any heart damage from the Adriamycin.

Primavera's picture
Primavera
Posts: 227
Joined: Mar 2019

The heart damage scares me and I'm always comforted by the people who didn't get any. After AC and Taxol, I will have Herceptin and I've been told that's another one that could damage your heart.

Yes, they told me Adriamycin has to be injected. They had 3 vials for me. And the nurse also said something about the port being used by oncology only. And that since I was going to have weekly infusions of Taxol 12x, they would take care of maintenance, and would continue with the Herceptin every 3 weeks for a year.

This all seems like such a long road.

Molly110
Posts: 190
Joined: Oct 2019

My blood draws were all through the port after I got one, but they were done by my chemo nurse, rather than the regular lab. Since I did the first chemo sessions without a port, I didn't realize the regular lab didn't do blood draws through ports and mistakenly made an appointment with them. When I showed up and they couldn't do it through the port, I ended up in tears after the ordeal (for me) of getting the port, and then to be told the blood draw wouldn't be through it. Fortunately, my gyn/onc's administrative assistant stepped in, explained it to me, and arranged for me to get the draw from my chemo nurse, where I continued to get it done from then on. Since I haven't had the port removed, I'm still seeing my chemo nurse for the blood draws before my 3-month check ups. Once I have it out, I will be back to cringing at the "regular" draws. 

els19
Posts: 103
Joined: Jun 2014

Primavera, congratulations on completing the first one! My experience with the icing was similar. My nurse did put the IV up higher so that I could use my mitts. So, you might want to insist on that because it can be done. It was still more difficult without a port because the IV limits movement. My nurse tried to help but was too busy. Instead of a portable freezer, I got one of those extreme cold coolers that's supposed to keep things frozen for days. I ended up moving it right next to by bed. I could then sit up and reach down and get the ice packs and mitts. It was doable but still difficult. You do not have to wait until your next visit to request a port. You should call your doctor today and request the order be put in for it. The radiology department at my cancer hospital was scheduled out a month. My doctor managed to get an over ride and I was added in as a fill in so that I can have my port before my next chemo next week. I had a port for all my chemos last time and it really is much better. Good luck!

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

So glad you got your port out!   It feels so good once its gone.  I had mine in for 6 years!  The only issue I had when it was removed was that I developed an allergy to the steri strips.

 

All the best,

Kathy

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