how long did you keep your port in.

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

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.

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.

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. 

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.

KatnHat said:

Flushing

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?

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

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.

Moped7946 said:

Flushing

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?? 

 

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

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

janaes said:

Thanks every one for sharing.

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.

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.