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how long did you keep your port in.

janaes
Posts: 758
Joined: May 2016

Just wondering how long every one kept their port in after treatment. Thanks love, Janae

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1531
Joined: Jun 2015

Since mine bothered me from day 1..... I had it removed 6 months after my last chemo treatment.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

My first port, I had taken out about 2 months after I finished front line treatment.  Two out of three of my various oncologists said it would be fine, I was through.  My gyro-oncologist said to keep it for two years.  I wish I had listened to him.  I had to have a second one put in seven months later.  It sets tipped because of scar tissue and some nurses have a hard time accessing it.

Hugs and prayers, Lou Ann

StrongerthanIthought's picture
StrongerthanIthought
Posts: 55
Joined: Feb 2014

I had my port removed 2 years after my last chemo treatment.  Having it put in was very uncomfortable. I really dreaded having it taken out. I was also concerned about having another one put in if it ever became necessary.  However, my doctor said there comes a time when risk of keeping it in (infection) is more than the risk of taking it out and maybe having to replace it at some later date.  Taking it out is a breeze compared to having it put in.

Soup52's picture
Soup52
Posts: 901
Joined: Jan 2016

I've had mine since Feb 2016 and finished chemo June 2016. No one has mentioned removing it and since it doesn't bother me I figured I should keep it for awhile in case of reoccurrence. I guess i prefer it to having it out and then have to have it put in again...who knows what is right.

Hma4's picture
Hma4
Posts: 38
Joined: Jan 2017

Hi, I'm fairly new too. I had my port put in, in June 2016, the nurse told me they keep it in for a few months - just to be sure. My first oncology visit was March 2017. What a surprise that they will flush my port every time I go in, no big deal Except, I didn't use the numbing cream before going and for some reason- the numbing spray didn't work- I will be prepared next time lol- what a journey! Best of luck- prayers #noonefightsalone

KatnHat's picture
KatnHat
Posts: 27
Joined: Jan 2017

Yes, I just heard too that my port needs to be flushed once a month, now that I finished chemo. They didn't mention before! Now, what's this about numbing cream or spray? Is that to lessen the pain from the needle jab?

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1531
Joined: Jun 2015

Hi Kat,

First, welcome to the board and congrats on finishing your chemo treatments! Yep, that is exactly what the numbing cream or spray is for. I didn't find the spray did a darn thing but the lidocaine gel did help.

I hope you are doing well and starting to feel better every day.

Love and Hugs,

Cindi

KatnHat's picture
KatnHat
Posts: 27
Joined: Jan 2017

Thank you for your welcome, Cindi. I'm still wondering about getting the port removed. My doctor sister says I should get it removed before tissues starts growing over it, plus the fact that it's always been very hard to access (though I was grateful for it during chemo). My oncologist said no more than a year.

Soup52's picture
Soup52
Posts: 901
Joined: Jan 2016

My doctor prescribed lidocaine cream. I put it on up to an hour before my appointment and cover it with Saran Wrap. Yes, it helps. My port is a power port and only needs to be flushed every three months.

Moped7946's picture
Moped7946
Posts: 40
Joined: May 2016

Nobody has mentioned that to me and I wonder why...it never did really give blood like it was supposed to...not realy keen to have any kind of surgery at this point so I don't care how long it stays in but it IS odd that there has been no mention of having it flushed. Maybe I should justy jump up and down a whole lot?? Tongue Out

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1531
Joined: Jun 2015

Moped, when was the last time your port was used? I'm concerned about it closing up on you. I don't know what other issues you may encounter without having it flushed???? I may be completely wrong about this - but I thought blood clots were also a concern. Please ask your doctor.

You don't have to have surgery to have it removed. Mine was done with a local in the doctor's office. The numbing shots hurt just a bit and I didn't feel the port coming out. It was fairly quick. I drove myself to and from the doctor's office.

Hope this helps...

Love and Hugs,

Cindi

Beebster
Posts: 20
Joined: Feb 2017

Port implant (left side) in December 2016, chemo completed in April, and after two clean CTs, received approval to have my port removed, in September 2016. Oncologist told me - twice! - that my cancer wasn't coming back. Ho ho. Port wasn't particularly uncomfortable. My original dx was Stage 1A, Grade 3 - mixed histology with serous (UPSC) component.  In December 2016, CT revealed recurrence with a large peritoneal tumor (5.3 x 3.3 cm) and lymph nodes involved, and metastasis to my liver. Oncologist was shocked, ordered a confirming PET/CT.  First chemo on Dec. 23 was by IV. My second port surgery was in January 2017, on my right side. Surgeon said we would not be able to use the previous site because of scarring issues.

I am responding well to my second-line treatment (liposomal doxorubicin and carboplatin), with lymph nodes and liver now showing NED. Large tumor shrunk by more than half. But chemos have been delayed because of low ANC (neutropenia). Most recent chemo had dox dosage reduced by 30% and carbo by 40%. Hopefully this will allow me to continue with the once-a-month schedule and no more delays.

As always, I feel great! I feel very, very fortunate to have avoided many of chemo's side effects that so many write about. Thanks to everyone for sharing.

Hopeful162's picture
Hopeful162
Posts: 82
Joined: Sep 2014

I asked for my port to be removed about two months after my last chemo treatment.

I was Stage 1A, Grade 3 UPSC after surgery in October 2014, chemo then following. After treatment I was given a chest/abdominal CT scan with contrast delivered via my port, to have a new "baseline," and that was when my oncologist said I could have the port out if I wished because he does not expect there to be a recurrence.

My port was not really uncomfortable, but still a bit unnerving, so I was glad to have it out. Removal was easier than insertion. I am now over two years NED, but still under regular "surveillance" as they call it.

pinky104
Posts: 574
Joined: Feb 2013

I kept my port in for 3 years.  I was afraid I'd jinx myself by taking it out earlier.  I guess I did jinx myself because my current cancer must have started growing about 6 mos. after I had taken the port out. My GYN/onc. thought the mass wasn't cancer back then because it didn't grow, but now it has.  I got most of it removed on 4/6, but I still have some in my muscle by my hip that I'll have to fight with chemo and maybe radiation. 

 

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

I asked my gyn-onc about removing mine at my appointment in March. He said that he wants me to wait until we get the results of my next PET scan in September and then we'll decide. Assuming the scan is clear and he is in agreement, I will have it removed at that time. That will be 22 months since it was implanted and almost 16 months since the end of front-line.

Kaleena's picture
Kaleena
Posts: 1958
Joined: Nov 2009

Had my port in for 6 years after my treatment.  The most annoying thing about that was that it needed flushed every 6-8 weeks.   Then I had a hard time finding someone to flush it.  I went 5 months without a flush until I finally found a doctor to remove my port.   My original doctor retired and the new doctor didn't want to remove it.  Then I got another doctor in another state so my local hospitals after several years of allowing me to have my port flush refused to let me get it flushed.

namedropper
Posts: 102
Joined: Dec 2014

I  had mine put in June of 2014 and get it flushed once a month. I like having it since it easier to get my blood tests.  My CA 125 number is now 28 down from 99 since I started taking the shots and the chemo pills for my breast cancer. I want to keep the port in for a while longer to make sure the breast cancer is NED like my MMMT uterine cancer is.

janaes
Posts: 758
Joined: May 2016

Thanks every one for sharing.  The feed back is helpful.  This is what is chalenging for me.  My cuurent insurance ends in december.  Its a good insurance and would cover the cost to take it out.  Im not for sure what I am going to do with insurance after that.  Ive considered getting a new job that has insurance.  I havent had much luck with this option so far.  I also can get on a different state insurance and keep my current job.  The problem with this is that it wont cover to get my port out.  Either way I go though will cost me more than i would pay with my current insurance.  I talked to my current insurance the other day and they told me if I ever got my cancer back and had sagnificant costs,  I could get back on my current insurance if i payed a certain cost.  It was in the hundreds of dollars.  Something I felt would be doable in the future.  I just dont know what to do about my port.  My medical oncologist (not knowing my insurance issues) said to keep it in two years.  What should I do.  Open to everyones opinions and ideas.

Kaleena's picture
Kaleena
Posts: 1958
Joined: Nov 2009

Just as Cindi indicated, what about flushes?   I had a terrible time after awhile to get my port flushed.   It should technically be flushed every 6-8 weeks.  I would check on that with your physician and with your insurance company.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1531
Joined: Jun 2015

Janae, Is your insurance going to cover the port flushes that are needed should you decide to keep it in?

I'm assuming that your new insurance would cover the cost of a new one if needed - I pray that is never the case! But, it seems if you have a recurrence and require chemo that is covered, this would be too. Just my assumptions though.

I hope you find a job that has benefits. It would make your life so much easier. Sending positive vibes your way for this to happen.

Another thought - if you have a recurrence, seems like you could go on disability. That would also put you on Medicaid (I think).... If others have a different understanding, please feel free to correct me.

Love and Hugs,

Cindi

CheeseQueen57's picture
CheeseQueen57
Posts: 802
Joined: Feb 2016

FYI, just going on disability doesn't put you on Medicaid. You are eligible for Medicare after 2 years of disability. 

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

How soon do you need to make a decision about your insurance? Also, have you talked to your medical oncologist's office about the cost if you had to pay out-of-pocket to have it removed? They may offer a discount if they know that you'd have to pay personally.

DrienneB's picture
DrienneB
Posts: 186
Joined: Aug 2013

I went against my doctor's recommendation to keep my port for 3 years and instead listened to my mother. I had it removed a month or so after finishing chemo.

daylady's picture
daylady
Posts: 122
Joined: Dec 2014

OK, I must be in the minority here.  I had a power port installed two years ago after Doxil literally friend my veins.  I LOVE  it!!!!  I get all my labs done through it, my Vit C infusions done through it, and if I were ever to do "chemo" again, it would be available.  When I am in Germany they do Vitamin and Detox infusions every day so they literally put in a needle, tape it up and leave it in the whole week.  All the nurses LOVE it.  You do have to make sure that it is accessed or flushed every 4-6 weeks, but I do not have any intention of taking mine out any time soon! - Helen

dybmapi
Posts: 3
Joined: Jul 2018

Hi to all.

About flushing, i had mine installed close to two years ago, for adjuvant chemotherapy after colon surgery. That was six months of chemo, every two weeks, ended in February 2017. I was told to flush it every six mnths, which i did up to 8 or 9 months ago, as my hospital moved to a new site and is not so easy to reach now. I went to the new place last Friday, and they told me that it had been decided to stop flushing, because the risks of infection are higher than the rewards! I was a bit shocked, and will see my surgeon for check-up in September, and while he had told me that he would take it off after two years if everything's fine, i may ask him to take it off this autumn based on the next results. Now, this is from Belgium, so the precudres may be different in the US, but be aware...

CheeseQueen57's picture
CheeseQueen57
Posts: 802
Joined: Feb 2016

i‘ve had mine since April 2016 with no end in site. Had a reoccurrence last year but NED on Megace. I love my port and was told only have to get flushed every 12 weeks. I’m also on eliquis. I’ve never had to go just for a flush. I’ve always had labs or some other test or a stent change and they’ve used the port. 

Armywife's picture
Armywife
Posts: 294
Joined: Feb 2018

I got my port in June of 2017, finished chemo in October, and they told me I must get mine flushed every 4-6 weeks.  I've been doing that since October.  I haven't had labs at all since the end of treatment, but they always took my labs by vein - the port was only used for chemo.  I'm very interested in this information from Belgium - Europe can tend to be ahead of the US as far as medical, as I learned when we were stationed in Germany, so if I'm risking infection, I want to know it!  My port doesn't bother me at all - an occasional tightness or twinge, but nothing unmanageable.

Jairoldi's picture
Jairoldi
Posts: 204
Joined: May 2017

I've had my port for a bit over a year since placement. I recently asked about having it removed and my PA said we could talk about it in September. She also said she would want me to have a CT scan before removal. Now I am weighing the risks\benefits of leaving it in. I don't want more scans than necessary. I also gently out my foot down on port flushing every 6 weeks. I asked earlier about just having it flushed at my 3 month checkups. Denied. So I just didn't call to set up my flush appointment until shortly before my next check up. All went well and they reluctantly agreed with every 3 months. Whew! Fewer appointments works well for me.

 

Soup52's picture
Soup52
Posts: 901
Joined: Jan 2016

Mine is a power port and just needs to be flushed every 3 months. I have had it since Feb 2016.

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

I had mine in for two years. trish

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