I have a port question - looking for opinions and personal experiences

Scars are the least of my problems right now also! I plan to have it removed and will ask for a referral at my August 22 appointment (also my last chemo round!)

I had colon cancer stage 4 and had surgery and Chemo afterwards. In 2019 ,I preferred a port. I left it in after all the treatment was done as it did not give any discomfort. I left it in for 3 years, almost forgot I had it in. It was convenient for followup CTscans and MRI ‘s over the years instead of putting an IV in each time for the contrast fluid during the procedures. Now I don’t need it anymore. It was never a problem to have it in all these years.
All the best to you,
Margreet

Thanks for your input!

Well now; with stage III colo-rectal cancer I was told by my oncologist and his physician assistant that the chemo port (Smart port) is used to facilitate chemo and will be removed after chemotherapy has been completed . I had been reluctant to have the port installed for months prior to the installation but they kept telling me that the port would be removed probably six weeks to 3 months after chemo has been completed so initially I reluctantly agreed to have the port. It has been 19 months since the chemo was completed and they still refuse to have it removed . I am now subject to their endless tests, biopsies, MRI's, PET scans CT scans , MRD, liver ablation and radiation, and repeated port flushes every month along with blood jabs. I have been offered numerous positions of employment as an engineer and construction manager and consultant which I cannot accept; at 83 years of age I am still able to work. It would have been beneficial to work instead of sitting around the house making an absolute pest of myself with my wife. At my age I know I am now a "short timer" and with that in mind I feel that my remaining months or years should be spent enjoying life and being productive instead of being subservient to callous, insensitive, and deceitful medical personnel on a tangent to sustain their modus operandi. I feel that I have been lied to and my trust in the medical profession has receded to less than nothing. Sorry ,but honesty is the best policy ,and please; don't dare tell me that I am being vindictive or wrong in my assessment.

@margreet Margreet; you must be different than the rest of us who have to have our ports flushed every month along with blood jabs. We were all told maintenance was necessary to ensure there was no infections, blood clots, anemia, or sepsis; and in order to do that the "Smart Port" has to be flushed monthly. Good Luck!!

@airhorn83, I'm sorry that you feel you've been lied to. That must feel like a betrayal. I wonder if there are more questions to be asked of your team about their refusal to remove the post. Having been diagnosed with stage III, are they concerned about recurrence or metastases? Is it possible they believe keeping the port is a good idea for future treatment possibilities?

As an engineer, I can imagine you would appreciate getting straight answers and data-driven information to drive decisions. Ultimately, it should be the patient's choice. I might suggest asking pointed questions of your team:
1. What is the reasoning for my having to keep the port?
2. What are the chances of needing the port in the future? % chance of recurrence?
3. If the port is removed, can it be replaced if necessary?
4. Can I choose to get future treatment (if necessary) without a port?

@airhorn83, is it the monitoring and scheduled follow-ups that you feel interfere with your moving on and enjoying life? Or is the port itself interfering with things you enjoy and want to do?

There are many things we've learned to tolerate on this journey, but lying? Unacceptable.

My husband has a port. An infusion home health nurse comes once a week to change the dressing and the needle. We weren't told about this weekly painful process. It wasn't a lie, in our case - it was more of an oversight. We're NOT naive, very assertive advocates for needs, and were surprised when we learned that the weekly visit was part of the process. We only heard the good points (e.g., husband gaining weight; balancing sodium to stay out of ICU), which have turned out to be life saviors, so at this point, my husband deals every Monday morning when the nurse comes.

We're using the port for TPN and hydration. My husband hasn't been strong enough for chemo and now the cancer has spread to multiple organs. The oncologist is now saying it's too late...which has infuriated our surgeon and she's seeing a second opinion at a different hospital. Too soon --- turned into too late. We're moving on from him. He was suppose to be incredible.

Telling you that because we do not have experience with chemo and the port. Hopefully, that is coming within the next week or so.

However, over the 7 months we've had the port, we've learned that some people keep their port, but it's "closed" and is not accessed. Means no more weekly needles.

As for any tests, say no. They MUST respect that. We've said NO to a number of things - for example, when we were getting discharged from the hospital yesterday, the hospitalist was insisting that someone access our port, and change the needle. We refused. No way was someone who doesn't deal with ports on a daily basis touching his port.

They backed off.

Wishing you all the best... and as a wife, I'm sure 90% of the time, she loves having you underfoot:)

Instead of having it removed, could you have it "un-accessed" and thus, turn off the tests and needles and such?

If you’re going to have chemo you need to have a port. The placement is a fairly simple procedure, though it does require general anesthetic. Removal is a piece of cake, in the clinic, local anesthetic. That being said, I AM younger that you, I’m ONLY 79.

I had a port for the 6 months of chemo. I loved it because I am NOT a needle in the arm person. When Chemo was over and my CT scans came back all clear, I was given the choice of removing it (an in-office Procedure) or keeping it. Keeping it would have required flushing it, etc. I chose to have it go. Plus, I had a 3 month trip planned in 2 months so could not get it flushed. I now get my blood draws and CT scan injections for check-ups done with a needle in my arm. I'm MUCH better with this process now, thank heavens.

Good luck!

At my oncologist’s recommendation I kept my port for one year after my surgery, just in case. Not a big deal. Went in every eight weeks to have it flushed and draw blood; took ten to fifteen minutes.