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I am tired of cancer....pain even though I am NED (at least to next week's scans)

dhs1963's picture
Posts: 510
Joined: May 2012

I am not sure if this is just me psychologyically preparing myself for bad news next week, or if this is a long term problem.  I am in a lot of pain...19 months post nephrectomy, deep under the scar hurts.  And the ribs around there hurt.  And where the chest tube was after the Met was removed hurts...and neuropathic pain, and something near the upper left portion of the abdomen, and other things at times, and a constant pain/pressure from lymph nodes in my groin (I think I can feel hard lymph nodes....they do not hurt, but press on the surrounding tissue).

I amost hope that the scans show the cause of the pain.  I think what scares me more than dying is this pain forever.  I can not sit for long periods, and I can not exersize. So I am kind of almost hoping it is not NED (though I feel like that is wrong -- I should want NED).  (it also might be that my job is very unstable and I am worried about money if I lose it...I do not think, in my current physical situtation, I could find another job).

If it is not cancer, then what is causing the pain?  Questions for my Doctors.  But, the Oncologists lose interest once it is not cancer.  I have not talked to my PCP about it...

Or should I talk to a shrink to learn how to live with the pain?


UPON REFLECTION (several hours later), this is how I am dealing with scanxiety....rationalizing that  positive result is not that bad.


todd121's picture
Posts: 1425
Joined: Dec 2012

Your post reminded me of a quote I heard recently that I really thought was so true. It said "Dying isn't hard. What's hard is living!"

The anxiety and dread and anticipation of bad things can really add to feeling of unhappiness in the current moment. And it's really hard to let go of it, especially when you have very real reasons to be concerned (pain, other symptoms).

I hope your NED. And I hope you get a break from your pain.

For me finding almost anything to really occupies my mind helps. But it has to be something that I can really get absorbed in. Perhaps you can find something like that?


Jan4you's picture
Posts: 1325
Joined: Oct 2013

First of all, I am sorry for ALL you have been going through. I wonder if you are having blocked nerve pain, along with adhesions from several wounds from your surgery. First get answers from the surgeon. Oncologists didn't do the cutting, the surgeon did. Yes a primary doc would offer you more RX pain meds, but if it were me, I would not go down that road, unless totally necessary.

I am lucky to have a highly trained chiropractor with training in neuro type injuries. In other words, your nerves were cut and stop communicating. In addition to his gentle chiro methods, he uses LAZAR light therapy to get the nerve endings to start communicating again. It has worked on me with old scars and was not expensive. Trust me most docs have not heard of lazer light therapy.

But also know how strong the mind-body connection is. So when you worry, fret and concentrate on your pain you can bring up the "memory" of that traumatic event and your body ACTS like it is in pain as a reminder. Focus on today and not into the future.

So it could be several things. Ask about adhesions to surgeon.

Let us know what you learn...think WELLNESS and your body can and will respond


donna_lee's picture
Posts: 939
Joined: Feb 2009

and we all go there sometimes. And I see where you're coming from if you'd welcome more surgery to maybe get rid of pain.  There could be some real causes; as I found out after one of my surgeries.

In 1997, I had a total abdominal hysterectomy/oopherectomy, plus a lot of laser surgery to remove endometriosis scattered throughout the abdomen and bowels.When a surgeon went in to remove a recurrent cancerous node, he removed a lot of adhesions that had built up.  So scar tissue could be a problem.

During the original cancer/kidney & part of liver removal surgery, they cut between 2 ribs; then sewed tissue and screwed the bones together with a plate.  That part of the surgery also cut the nerve to my lower right lung lobes.  Although there is no true pain, the term is "atelectasis"-a retraction upward of the lung which makes it more difficult to take a deep breath.  (bad when you have a cold like I do now and need to cough a lot)

The waiting for the test anxiety is starting to creep up on me.  I have my labs tomorrow morning and if they are low like they were three months ago (eGFR) the doc may cancel the CT.  When I'm in tomorrow, I'm going to lobby hard for the test, since it's been over 6 months since the last one.  Also want to have my  lungs checked, since I think there's some residual bronchitis going on.

I know it costs $$, but you need to find out the cause of the pain, if you can.  Then explore options to make it quit or block it.  And, yes, I've heard the prayer, "Lord, give me patience; and I want it right now."

There are no quick answers, but thanks for unloading on us rather than kicking the cat. :-(

Maybe we can both come back with NED on our next reports.  Good luck.


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