Expected to keep a chemo port for 10 years.

noescape Member Posts: 3 Member
edited April 24 in Breast Cancer #1

I am so disgusted. I don't even know where to begin. I have been a cancer patient for 15 months already. I have survived 16 chemo treatments, my right breast being surgically removed, 5 lymph nodes removed, 18 radiation treatments. I could only tolerate my chemo port for 3 months. About a week after I got the chemo port, I had numbness in the right side of my neck and right side of my face. I called my oncologist and was told if I had nobody to drive me to call 911 and have EMS come and pick me up and take me to the ER. When the ER realized I was just having the signs and symptoms of a stroke without actually having a stroke I was given a one way bus ticket and sent home on a public bus. Nobody took an x-ray or any other type of test to see if something was wrong with my port. For 3 months, I was wearing a neck collar around the house that I bought from a pharmacy to try to keep pressure off my neck. I had trouble going to sleep. Many times I could not go to sleep unless I was wearing the collar and then about 2 hours later I would wake up with the collar bugging me so I take the collar off. Almost every night at some point I would wake up in so much pain in my chest area I could not move anything from the neck down. Finally, my oncologist agreed to have it taken out. On the day it was taken out, I think at least 5 people who work at the hospital spoke to me one at a time trying to talk me into keeping the port in. I couldn't believe it when it finally come out. The rude way I was treated even on the day of removal made me feel that things were not resolved. And I can now see why. I am a "hard stick" and they want me to take 10 years of estrogen lowering meds. Here I am more than 8 months after having my last chemo treatment and I am going to have to agree to put a port back in or I guess I am going to have to stop going for any type of cancer care because nobody should have to waste their time looking for a vein. I am at a point where somebody only needs to look for a vein once a month for a blood test. a blood test. I have heard of people keeping their ports in for years but I never heard of this being done for blood testing. I was told I might want to try a PICC line. All I know is if I have to have something surgically put in my body for a once a month blood draw, I have to go change hospitals because I sure don't trust this hospital to listen to my concerns if I am in pain. I now have to waste my time changing hospitals and I don't even know if that will do any good. Are there any nice cancer doctors? I also had a radiation and breast surgery complication that was also handled in a rude way but my story is already too long.


  • Basils
    Basils Member Posts: 10 Member

    I am so sorry you've had to go through all that. I will say that I actually changed medical groups completely because I wasn't being heard. It was a really hard decision because starting over with a new doctor and waiting for an appointment are a really big hassle and you don't even know if what you will get is better than what you left. But I will say if you research another medical group or facility in your area that is academic, you may have better luck. Also, if you do have an HMO like I do, which makes it even more of a hassle, you can use your work address or your home address usually. So even though you'd have to maybe travel a bit if you work out of town, the medical group may be a better choice there.

  • DanielaN
    DanielaN Member Posts: 6 Member

    hi , I m with you on the port being a pain - I didn't want it and they pushed so hard for me to get it, that I felt I was in a car dealership more than an hospital , they way the push installing those ports is bad.

    I m getting mien removed tomorrow, I rather do the rest of my chemio via arms, I feel having a port ha snot help, they have to troubleshoot every week problems, and its painful to access it, I can'r really slept on my side because it hurts at night plus is looks horrible on my chest after a bilateral mastectomy and I think it's not as helpful as they make us believe. (I m with kaiser)

    to keep a port just draw blood is INSANE - they are easy to spread infections and I think the hospital just want to see those ports, even when not necessary.

    I hope you find a way to avoid it and have the blood drawn from your arms .

    best wishes

  • noescape
    noescape Member Posts: 3 Member

    I had two appointments at my cancer clinic this week and could not bring myself to go to either one of them so I will have to make some changes. I feel better knowing I am not the only one who wants to change medical groups.

  • noescape
    noescape Member Posts: 3 Member

    Thanks for replying and I hope your port removal went well.