Bone mets vs. "regular" bone or joint pain

[recce101]

I've got a question for anyone and everyone dealing with lung cancer who (a) has developed bone mets, especially in the lower back, pelvis, or hips, OR ( has had symptoms causing worry about bone mets which after investigation turned out NOT to be mets:

Have you come up with any clues or symptom characteristics that might help to distinguish one from the other? The actual sensation itself? Whether or not it goes away after you've been active for a while in the morning? Whether or not it seems related to your sleeping position or any particular activities you did the previous day? Whether it gets worse day by day or just comes and goes over weeks and months? Anything else?

Of course none of this is 100 percent and I remember a case or two where lower back pain was checked out, said not to be a met, attributed instead to a previous injury, then later turned out to actually be a met. But maybe there are some clues that are reliable most of the time...?

Aloha,

Ned

[Patti B]

Ned-

I have bone mets in my spine and rt hip which have actually gotten better since I was on Zometa (scan next week so knock on wood). I have had these mets for almost two years and I cannot distinguish sometimes whether its pain from them or just over=exertion or a combination of the two. Twice they did a MRI of my hips and pelvis because I was hurting SO bad and it turned out that there was no change in the size of the mets. Of course, my doc also says that Alimta cause joint pain who its hard to tell.

In other words, I dont think I have helped you at all .

BUT- why do you ask??? Are you having problems??????? Sure hope not.

Hugs - Patti B.

[Connie B]

Boy Ned,

I've got the lower back issue, joint issue & left hip pain and have had it for a very long time. I've done the CT scans, the MRI's and X-rays and everytime I go through it, I come up clean! HOORAY, but it's frustrating as well to have this pain and stiffness and they say, "Your not getting any younger!" That doesn't make the issues go away though.

My lower back pain is (burning pain) my hip pain is (stabbing pain), my joint pain it (acheing/stiffness pain). So, that's the best I can offer for a discription. But so far no mets for me.

[SandraL]

Aloha Ned. Sorry to be of no help because you are always of help to me. My spine mets felt exactly like I had pulled my back. And I convinced everyone of just that for too long. No other early warning signs I can remember. My back feels better when in use a bit. If I have done too much during the day, which is many days for me, then it tightens up big time at night and it takes me a long time to get limbered up in the morning. I have obviously done some serious bone and muscle damage. Pain meds help somewhat with bone pain but haven't had a good buzz yet.

My leg ache feels completely different...more deep aches and throbbing...and way worse after being on it all day. So I am hoping and praying it is not mets. But rather something less threatening like a blood clot. (I hope that is less threatening!!!) Pain meds do very little for this kind of pain. I think I eventually just fall asleep from pure exhaustion. At least the Olympics are on now and I can think back to the way my body felt when I was a speed swimmer versus now.

Hope there is some glimmer of help there for you. What's up? Do tell.

Sandra

[mary colleen]

Ned,

The only think I can say here is that some of the medical sites mention that the pain of mets may tend to become worse at night - I have done my share of surfing due to pain my husband has. On the other hand, a good share of pain of all causes becomes worse at night....if it didn't, Tylenol PM wouldn't exist.

MC

[recce101]

I can't really say why I got on this subject today. I never have any back or hip pain when seated or lying down, just when standing or walking for more than a few minutes, and even that is probably less than most people here who have never said a word about their own lower back problems. I can recall times many years ago when I got an achy lower back after standing or working for long periods without the opportunity to sit down, and this may be just the same thing magnified by age.

The bone scan I got in September 2006, during my diagnostic workup before starting chemo, said "Degenerative changes are seen in the spine especially in the lower lumbar region. Mild benign joint disease is noted." And there's no reason to expect it would have gotten any better on its own!

But I did discover something interesting last month when the wife and I started taking longer walks with Rosie just after dinner. The first couple of evenings I started getting a good bit of lower lumbar discomfort within the first half-block, so I would walk with my hands behind my back massaging that area, and being tired near the end of the day, I also had a tendency to hunch or lean forward while walking. We were discussing what to do about this rather pathetic sight, and I remembered a time in the early 1960s when I hauled a heavy backpack through the Nevada hills for several days at an Air Force survival school. I hadn't worn a backpack to any extent before that school, and I was surprised how good it made my back feel. So our son donated his oldest backpack, which I loaded with some exercise barbells and adjusted so the heaviest part of the pack touched just above my back pockets, and off we went the next evening. What a difference! My shoulders felt great the entire time, and there was never a hint of discomfort from the lumbar area. Our walks are getting longer, and Rosie loves them so much that we even go in the rain, carrying a big beach umbrella for cover.

I guess I won't worry, at least for now. Thanks and Aloha,

Ned

[beatlemike]

Sorry I dont have an answer for you Ned. You have been so helpful here with your information,I hope someone has a good response for you. Maybe it would be a good question for Dr. West. Hope it gets better soon.

[mary colleen]

Ned,

I think I know what you mean about the weight feeling good against your back. I'm sure that if you thought you had a problem, you'd be going to the onc to mention it. For now, I would almost certainly blame Rosie, who looks like pure trouble:)

[Connie B]

Well Ned, I don't think your precious Rosie is any trouble, (she's toooo cute for words) but I sure can relate to the lower back pain, as can my hubby. Walking makes my hubbies even more sore, but it appears to help my back feel better when I walk.

We both have some disk deteriation lower lumbar issues going on, but they tell us it's not serious yet. Maurie (hubby) just had the shot done 9 days ago. He feels a little better, but nothing great yet. Time will tell.

For Maurie and I enable to do those shots we have to go off our blood thinner meds,(heart disease) and they really don't like doing that, but they monitor him closely when they stopped his blood thinner. He had to be off of it 7 days. All went well in that area.

Sure hope your back starts to feel better soon.

[recce101]

This probably calls for a new subgroup -- The Degenerative Spine and Joint Changes Club, or The Degenerates for short.

But seriously, I think one reason we're having so much trouble sorting out the met vs. non-met symptoms is that most of us -- at least those anywhere near my age plus those younger who have a previous injury -- have some spine and joint issues going on independent of any cancer in those areas. Perhaps a met, especially in the beginning, doesn't cause any identifiable symptoms of its own, but just adds to what's already there. If undiscovered and untreated, the met may eventually result in symptoms which DO have identifiable characteristics. There I go, overanalyzing again.

Aloha,

Ned

[SandraL]

I'll join your club Ned. I like clubs. I am perhaps a bit young, but maybe you will let me in anyways.

Sandra

(and just for coming up with a new club I blessed you with my first ever use of an emoticon...I will get the hang of this website yet!)

[Ellen in PA]

Hi Ned. I think the short answer to your question of how you can distinguish back pain due to bone mets from back pain due to injury/degenerative processes is that sometimes you can't. Here's how I came to that conclusion:

Background (no pun intended): Chronic lower back pain (like since high school!), finally had back surgery in 2000 to fuse the L4-L5 and L5-S1 joints. Surgery was botched and of no help but I learned to stop complaining.

Fast forward: Dx 12/07 with NSCLC with mets to pelvis (beginning precisely where they'd harvested bone in 2000 for the back surgery, hmm, rear left iliac crest) but it didn't hurt at all. About 2 months ago, I felt pain in the right groin and hip and they found a met on the right side of the pelvis hitting the top of the femur. Then I developed good old sciatica -- shooting pain down the right leg, sensations of burning and stabbing in right leg and foot. This I was sure was not from a met since it felt like the sciatica I've been prone to lo these many years. Well, I was wrong. A third met had formed on the L3 vertebra, on the 'inside', facing the spinal cord (actually cauda equina at that level) and poking into it. And it was the L4 nerve root being poked, which doesn't exit till the L4-L5 space. So it was the same nerve root that I'd always had problems with, only this time caused by a bone met instead of a degenerated disk, and higher up in the spinal column than the disk was.

I agreed to 14 radiation tx to nuke the right side of the pelvis and the L3 vertebra. The L3 vertebra problem disappeared the second week of tx and has stayed away; the right hip/groin still hurts like hell but I'm told the radiation could still do its thing.

Anyway, the lesson for me is that all pain is something impacting somehow on some nerve and the affected nerve doesn't care whether it's a tumor or a piece of spinal bone collapsing on it or a bullet or whatever -- it just hurts. Btw, my original met (left rear) is now quite huge but is still totally painless -- not near any nerves or moving parts.

So maybe mention the problem to your onc. Just stay away from neurosurgeons no matter what it is. In the meantime, you might want to try large doses of Ibuprofen (800 mg at a time) -- it works pretty well for me whereas Oxycontin etc do nothing.

Good luck! And aloha from Philadelphia.

[Larry's Wife]

Ned, have you ever considered going to a chiropractor? Larry had sciatica and degenerative disc disease years ago. He got relief from a chiropractor and a pain doctor who gave him some cortisone shots in his spine.

After he was diagnosed with lung cancer, we found out he had mets in his hip. He did have pain in this area, but it was always attributed to his degenerated discs. To him, the pain was the same. Unfortunately, he didn't go back to the chiropractor, so I can't tell you if he might have gotten any relief.

Lynn

[recce101]

Thanks, all, lots of good info. Seems there's a general consensus that pain is pain, and whether it's caused by a met or degeneration usually isn't apparent from how it feels. Actually, my question was mainly one of curiosity, perhaps with "planning ahead" implications, more than any immediate concern. I've been going out on walks with the weighted backpack for several weeks now, and the lower back feels much better than it did a month ago. If it starts getting worse I might consider a chiropractor, but what I'd REALLY like to do is revisit some of those delightful Bangkok steam bath establishments where the young ladies are so proficient in back walking. Pure pleasure! Maybe even better than some of the other stuff that I'm too old for now.

Aloha,

Ned

[Ellen in PA]

Hi Ned.

Instead of the backpack, you might want to try a back brace, esp one that comes with a rigid insert over the lumbar area. It should be easier on your shoulders.

Good luck.

[jaminkw]

Ned, I've had leg and back pain that I've "doctored" for since I was 20. The primary pain was in my legs but the back was believed to be the culprit--or not. They said I had a congenital defect of my lower spine that could cause any range of symptoms to none at all! I learned to live with the pain when someone who'd had back surgery said whatever you do, don't let them cut you as long as you can still walk. I learned to complain less too.

I was in a car wreck in the late 70's and the pain is increasingly in the low spine and into left hip now. My massage therapist swears if you can learn to sleep on your side with a fluffy pillow between your knees, you'll wake up with less pain. The idea is to use the pillow to create a straight line with the body.

My father died of spinal mets that went undiagnosed until he was inoperable. I don't know but I think once I get on Medicare, my spinal pain is going to get bad enough for a full MRI. The fear of this stuff is just awful.

By the way Ned, I think your backpack idea is ingenious. I may try it myself since I have been limited in the distance I can walk without back pain for many years now.

Judy in Key West

P.S. Did the chiropractors, back brace, orthopedic shoes etc etc without effect.

[dfourer]

I've got a question for anyone and everyone dealing with lung cancer who (a) has developed bone mets, especially in the lower back, pelvis, or hips, OR (

Hi, Ned. I hope you are doing well.

I describe bone mets as a migraine in my bones. Deep throbing pain. Moving around, standing, sitting, lying down, exercise, makes little difference. However, in the early stage, it always started when I wanted to rest or sleep. Usually in the evening. It was intermittent, leaving me alone for a day or two, then really bad for a couple of hours, then nothing for a day or two. Later, flare-ups often effected all the mets at the same time. The quiet periods got shorter and the pain more constant.

A "bone scan" test confirmed the actual location of all the mets, and it precisely matched where the pain was. This is a whole-body radiology test that shows absorption of a radioactive tracer by bones. It shows any kind of bone disease or fracture as dark areas. It's painless and relatively safe. Joints, tendons, pulled muscles, do not show up.

The first met, in the shin bone of my leg, was a little different. it started as a tender spot that was very sensitive and hurt badly if I bumped it. Later it throbbed like the others. Also, I developed some joint problems that were caused by the bone mets. That was totally exercise dependent. The throbing would sometimes start first, and the hip or shoulder problem would remain after.

I've read that some people have reletively painless bone mets, until it causes some painful fracture or joint problem later. They would have quite different symptoms.

Some people report relief from Zometa. When I started Zometa I could not tell if it was helping any. Later the chemo drugs helped, but did the Zometa also help? When I went off Carboplatin/Gemcitobine (the first chemo), but stayed on Zometa, all the cancer came back and bones hurt again.

David in Chicago

[hinj]

Ned,

The pain that you are describing is pretty classic for something called spinal stenosis. it is also called neurogenic claudication. It is caused secondary to those degenerative changes in your spine narrowing the area where your spinal cord is. It is very common in older people. The classic symptoms are described as such: it hurts when you start walking and is usually alleviated fairly rapidly be rest. The pain is typically relieved by bending forward. patients will say that they feel better when pushing a grocery cart because they can lean forward on the handles.

you can potentially get epidural steroid injections by a pain doctor to helo treat this condition. it is also typically treated with medications described as neurpathic medications. I thought I remember you saying in previous posts that you are on or had been on meds such as neurontin and/or lyrica. these medications should also help with the pain.

[recce101]

Thanks, David. I'm happy to say that my symptoms don't match your description, at least not yet.

Hinj, that's exactily what I'm feeling, including the grocery cart thing and the tendency to lean forward when walking. I'll Google those medical terms and get more info. And yes, I'm still on Gabapentin/Neurontin, so chances are it would be worse without that. Thanks for the help.

Aloha,

Ned