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Pain in port area....around right shoulder...any answers?

Posts: 92
Joined: Mar 2009

Hello, so my mom had a PET Scan last tuesday, still awaiting results, im really just hoping for the best...but today, i called my mom and she said at around nighttime just now, she started having amazing pain, like 8 out of 10 scale, around where her port is located, right shoulder. I just need to ask if any of u experience this once in a while? She never had this much pain, but i was wondering if its "normal" with her condition, what might it be causing it, and why is it all of a sudden popping up....

the frustrating thing is she has this event that she will attend tomorrow, some wedding, its like a big deal, and man oh man why does it always feel that whenever something "happy" is about to happen, news like this goes on... i just want to ask sometimes why pain is given to those who least deserve it.

Thanks for ur input on this subject matter.

Posts: 80
Joined: Oct 2007

I experienced the exact same symptom, severe pain around the shoulder of my port arm. I had heard about the possibilities of blood clots causing this symptom and went in to get a doppler ultrasound. The ultrasound showed that I had multiple clots in my vein. They put me on a blood thinner, coumadin, right away and the symptoms along with the clots disappeared. Your mom needs to get this checked out right away. Blood clots can be life threatening if they break off and go to the heart or the brain, etc.

Hope for the best,

Posts: 124
Joined: Jan 2008

I started having pain just above my port/underneath my collar bone around FOLFOX #8. It started a few days after I had my infusion. At first, it would subside by the time it was time for my next treatment - but as the treatments went on, it lasted the full 2 weeks. At first I figured it must be the Neulasta shot - so at treatment #9, we skipped the shot, but the pain persisted. I had the ultra sound test to see if there were blood clots and also some sort of dye test to see if the port was leaking. No blood clots - no problems with the port.

Called my surgeon and talked to her - went over everything - again, not a port problem. My pain meds from my surgery (oxycodone) did nothing. I tried massages to help loosen things up - it helped a little, but not much. By round #10 the pain was so bad I called my oncologist in tears - I simply couldn't take it any longer. It felt like I was being stabbed with an ice pick. I couldn't lie on my back as the pain was excruciating if I had to raise my body. I slept in a recliner, but even getting up from a sitting position was painful. I thought I could "tough it out" and just get through my 12 rounds, but the pain was just too much.

My oncologist ordered a CT scan on a Friday afternoon, to determine whether the cancer had spread and might be causing the pain - CT was clear. He decided it must be the Oxi as we had ruled everything else out, and planned on dropping the Oxi from the mix as of my next treatment. I saw him the following Monday as a follow up. Over the weekend he said he thought about it and decided it wasn't the oxi - it must be the port - despite all tests showing that the port was working fine. So he ordered the surgeon to remove the port.

Two days later I was in the hospital to have the port removed; still in great pain. After the surgery I felt IMMEDIATE relief. To this day he can't figure out why the port was causing me pain - other than there may have been a very small leak that didn't show up on the tests or that it was pushing on a nerve. It took several weeks for the pain to completely subside, but it did. For my last 2 rounds my oncologist just had me take Xeloda.

I know how bad this pain is - worst I've ever felt in my life. I rarely cry from pain, but when I called my oncologist that Friday, I was literally sobbing in pain.

ninetoes's picture
Posts: 81
Joined: Jun 2009

I had the exact same symptoms, severe pain around the shoulder of my port arm. I had an ultrasound. The ultrasound showed that I had a clot in my juggler vein. They put me on a heparin drip in the hospital. Two days later my clot got 3 times the size, they took out the port. Now I have to give myself injections with lovenox until I figure out how to get my Chemo. Have your Mom get this checked right away.


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