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

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?

I have stage 3C colorectal cancer. After 12 cycle treatments, scans didn’t detect any so doctor ordered to remove the port. However the cancer came back 6 months later and they put a new port in again. Unfortunately Cancer has come back 3 times and have spread to lung, liver, last bone, and around stoma.
I have dealt with this bad boy over 4 years and just learned that there is no drugs/medications out there to treat my new cancer gene KRAS G12D. I’m on clinical trial with a new med. Hope it works for me.
You may want to have gene test to check whether your gene is good or changed to a new variant.
It seems you are way better than me.
Best good luck to you!

@george544 I would suggest that you review details on the "Smart Port"and the specifics on flushing and maintenance. You are probably unaware of the dangers of chemo port infection, blood clots , pulmonary embolism, sepsis, etc. Basically when a doctor tells a patient that " the port can be removed probably 3 weeks to six months after your chemotherapy has been completed"; and then 19 months elapse , numerous requests for removal of the port are made by the patient and the port is still intact.; now tell me if you would call that an honest remark by a doctor.

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 my port in for a year. Every time I looked at it or felt it I thought this was the pathway to overcoming cancer. This made it possible for me to receive the medicine I need to become cancer free. We all have been through so much being diagnosed and living through treatment. If you have to keep it in for a bit longer know it’s not forever.