pain will not go away...

steveandnat said:

sorry for your pain
I know exactly what your going through because this stupid cancer causes so many pains. I recently have had ongoing pains which I think is connected to prostrate. After two months I finally convinced the Inc to order Ct and pet scans. Got Ct on Friday and her pet tomorrow. Injustice want to know if anything else is going on.

Your Body/ Your Life

I am sorry that you are frightened and in pain. Neither feeling should be dismissed. If I were you, I would get another opinion from a physician not involved. It may be just as they have said but you have a right to have your concerns addressed more proactively.
Best wishes.
Cathleen Mary

Hi Tessa
"Not protocol."

I heard that one a couple of months ago when I did my last scope...they tried to push me to 3-years and said that this was "not protocol" - and I told 'em flat out, "I'm not interested in what is and what is not the correct protocol...it had been 18-months.

I just told them I did not feel comfortable with waiting another year or so...and to mark down whatever was required to authorize this test - think outside the box, I told 'em.

And it's the same thing with your CT scan...you might need to lean on them a little more and tell them that another 8-wks makes you nervous and uncomfortable....how soon could we move this up?

It would not be unreasonable to ask for such a thing - I know we always say that they work for us, but the truth is we have to do alot of what they instruct us to do, UNLESS we feel strongly about something and then we need to make them more aware...it's easy for them to dismiss our feelings....and the older we get, the more they might not take it as seriously as they should.

If you have to, sit down and write out your wishes to the doctor so he can't bamboozle you during the consult. Let him know specifically what you want and what your wishes are. If you prepare it beforehand and show it to him prior to the visit, I've found that they tend to take you a little more seriously, because you went to the extra effort and not just some whimsical 'I've got phantom pains' that they might tend to ignore.

"You gotta' pay the cost - to be the boss."

And it's not abnormal to have pains after surgery or treatments, many months and or years after the fact....bottom part of my lung has finally died (15 months after last radiation treatment and 18 mos after the last lung surgery.)

The scar tissue is worse and when I lay down at night, it spasms unmercifully for a half hour and alot of times I have to turn over to shift it from rubbing on something. Was bad before, but more troublesome now.

I've hurt in the liver area again too (new tumor may be there now) and it felt so tender and stretched last week, just don't know.

The problem is that time does not make any of this go away...once they do something to us, the ramifications are for life and time actually can work against us with that regard. They consider me a 50-year old man with the body of a 70-year old inside.

That kind of thing does not bode too well for my future, should I continue to live. It will be harder for me tomorrow than it was today, as a result of everything that I've done - or might do again in the future.

I know you're scared - truth be told, that liver pain had my attention too and it was unnerving...I've been under a lot of stress and that could have had something to do with it.

If the pain pills are helping, that's good....I don't like to take them either, they can back you up as you know....it seems we always "trade this for that."

Get back with your onc and talk about the scan cycle...the answer could be there.

And as for the settling, the doctors may be right about that, Tessa...I've developed 2 hernia and they are the result of abdominal surgery I've had in the past. When they take out some of the original equipment we were given, they do not replace it and it does have a tendency to shift over time.

Like when you dig a hole in the yard and then fill it back up with dirt...the ground can shift and the dirt settles below the line that you filled it to.

It's kind of like that. Time and Patience, Tessa:)

-Craig

I'm going for a CT tomorrow for ongoing pain
My last surgery was almost 2 years ago, but over the past couple of months, the tearing pains in my belly have worsened both in frequency and intensity. The likelihood is that with all I've been doing (curling several times a week, and various exercise classes), I'm tearing adhesions, but my surgeon wants to rule out a new hernia, hematoma, shifting of stuff in me, or new tumor growth, so recommended a CT scan. I wasn't due for one until 12 months from now; I had one in October.

Tomorrow, down to MSK for a CT scan, and hopefully the reassurance that I just have to live with nasty scar tissue.

But yes, pain well after surgery is common. As I mentioned, I'm almost 2 years out. And my prior surgery was 3 years earlier, but I still had adhesion pain up to my subsequent operation. I know that this pain may be lifelong.

That being said, to heck with protocol. When there are problems, that trumps protocol. Unless your dr is sure that the pain is routine post-op pain, he should take your concerns seriously and look into them.

On a related side note, the afternoon that my chemo port was installed, while in the recovery room, I was in extreme pain. The nurse kept insisting that mine was a "2 Tylenol procedure" and I couldn't be in that much pain. Having had 2 children with no medication, I know I have a high pain tolerance, and this was wrong. Finally the dr who placed my port remembered that I'd also had a CT scan that day after the port placement. She reviewed it, and found that my port had twisted on itself; there was a reason for my pain. overnight in the hospital and back to the OR first thing in the morning for removal and replacement of my port. The nurse wouldn't believe me, but I knew there was a problem. We have to stick up for ourselves.

karguy said:

Pain
I think you should get a ct scan just to be on the safe side,and to ease your mind.You may be ok,but there must be a reason for the pain,and you should find out what it is.My pain was gone after 8 months from surgery.I hope you find out what it is.Good luck.

stil painful
I had my surgery the end of april last year. Still painfull ( it comes and goes) right under and left high. Exactly were the cancer was. Drs. told me not to worry but to be on the safeside I have a ct scan beginning of May.
CEA is still down and often accurate for me.
Try not to worry to much, stress is really bad.
Good Luck.