Arthritis vs. Bone Mets

[Deleted User]

Diane & what now - I'm wondering how you are doing?

Raye99

Laura - thanks for bringing up this topic. Very interesting.

I've had a pain in my right butt bone of all places for two weeks. Worse when I get up in the morning - this morning I got up out of bed and fell down as my right leg kind of gave out on me with my hip/butt bone hurting. Hurts when I have been sitting and get up, but does not hurt when I am sitting down. Gets better with activity. Arthritis at 42? Sciatica (sp?)? the other? Scary. But even more scared to go and get a scan/biopsy/MRI.

Laura - I saw your post back a couple of pages about tumor markers. I told my husband last week that the girls on the boards talk about these tumor markers. He asked me what they were and I said that I had no idea! My onc nor any of my drs have mentioned tumor markers. I thought maybe because I was triple neg. and it had something to do with ER/PR+ girls.

What do you girls think about the butt bone/hip pain? I did ride a bike about 2 weeks ago, but this has never happened before - this pain.

Thanks much in advance,

Raye

chelev

Raye, I have been having intermittent pain in my left hip and butt bone/extreme low back since I was given Neulasta, which was almost now four months ago.  Flared up again when I was starting Femara, and stayed with me even though I stopped.  My last bone scan, they pointed out what they called arthritis in my shoulders but I don't remember anything about hips, and of course, with all we've been through, you start thinking, oh crap, is this arthritis or mets?  It does feel better when I am moving around, worse when sitting for long periods and I try to work out despite it, to keep moving and being "normal."  Tylenol back & body helps some, but like you, am afraid to ask for a bone scan because . . . I don't really want to hear any more bad news.

Raye99

Hi Michele,

You mention working out - I do the same - run, do squats, pushups. Actually, the running makes my butt bone feel better. But yes, I too think is this mets or just soreness??  I have been doing the same exercises for years and haven't had this problem until now. Odd. Thanks for the tip on Tylenol Back and Body - I will give that a try. 

I didn't have much bone pain on Neulasta - just a tiny bit of lower leg pain and flu-like symptoms. Taxol gave me some bone pain in my shins - comparative to the shin splints that I used to get running track.  

barbe1958

What annoys me, is that without an onc I had to be my own advocate. I asked for a bone scan from my PCP. Got it. (That's when the tech came out and asked if I was in pain in my hip. I take a LOT of painkillers and said no.) I was lit from hip to hip on the scan, but they put it down to bursitis! So I had also asked for a torso CT which I learned from you ladies that I'd need. Got it. No neg response so I figure no news is good news.

Last week I had my FIRST and only onc appointment and asked her all these questions. She was a bit condescending at first until she started going through my scans and said of the bone scan "See, they wanted a follow up MRI to co-ordinate their findings." Duh. I wasn't told that. Total coincidence I had asked for one! So I asked what the MRI findings were and she said "Oh, it's unusual. Looks like they didn't comment on it. I'll get back to you on that." Riiiiiiiiiiight.

Newbie21

Hi,

So can anyone answer what scan(s) are needed to get s definate answer as to a hot spot fnd on a bone like a rib. What is enough to figure it out 100%? This is all getting confusing.  I understand if no one can answer this. Thanks Giulia

jpann39

Giulia

I think the only way to know for absolutely sure is to have a biopsy done. But as I said in my PM to you, if she had radiation on that side near her rib cage she might be having left over pain from that...

I would call the doctors office and speak with a nurse or doctor to see what they think.

Hugs

Jule

[Deleted User]

Raye - HI THERE! First...the butt/hip pain: before I can accurately answer your post...have you ever had a bone scan or a bone density done?

As for tumor markers...I am still unclear as to why some Drs do them and some don't. Although, I get the impression that some Drs think it's an accurate way to monitor recurrences or mets, and others simply do not. At the time of my dx, my Dr said simply "we don't do tumor markers". If I knew then, what I know now... I would have asked a very simple question: "why". For a while I felt insecure about my future because I DIDN'T have tumor markers done, but now I'm comfortable with just having blood work done regularly. If tumor markers aren't always accurate - I would freak everytime they were checked and then REALLY freak if they were elevated.

jpann39

As for me on the Arthritis front....Im being tested for Reumatoid Arthritis as I have knots on my fingers and wrists. I guess this is a sign of RA.

I seem to be muscle and bone sore all over and never can get enough sleep so feel exhausted all the time. Primary doctor says it because I hurt and even though Im getting 6-8 hrs of sleep each night, plus most days an hour nap after work that Im not resting well due to pain.

Will see her again the end of next week for test results and talk about whats next

I would love to say that this is a left over from BC but I think now its more age related, although I am only 48 yrs old. I feel young at heart so Im guessing family genetics are at work here.

Hope everyone is doing well.

Jule

Raye99

Barbe - I hope they get right back to you - have you heard anything yet?

Laura - Hi there Sweetie. Yes, I had a bone scan when I was first diagnosed, but have not had one since. To be honest, I am afraid to get scans due to the worry and waiting associated with them. My onc understands and has advised me to just let her know if anything feels strange with my body - anything.  Fortunately, this am, the butt bone pain had subsided significantly - so perhaps I just pulled something? I hope so. And Laura, I feel the same way you do about the tumor markers, just another test to make me a nervous wreck. I am with you with just having my blood work done - that's all I do. 

Raye

[Deleted User]

Raye - You should probably have a bone density test done... just to establish a baseline of your bone density - at your current age. It's not a "scary" test... it takes about 5 minutes. Even though you are young, you could still have a little arthur-itis (lol) going on. Do you take Calcium supplements? If it is arthur-itis, strength resistant machines at the health club is the best therapy (hip extender machines).

nancyd

Raye, my onc does tumor marker tests with my regular blood draws, but he never mentions the results unless it changes significantly. It did spike up once as I was doing radiation last September, but then it settled down again and things have been normal since then.

I'm having my first PET/CT scan tomorrow since surgery and chemo  (this wil be #3 overall). I have had aches in my ribs, especially the radiated side, shortness of breath, and other assorted symptoms, but all have come and gone over time. It will be interesting to see what the results are. Kind of sad that they could all be after effects of treatment, but I'll take that over mets, anyday.

dreaming

I was very healthy till I got B.C. now I have , osteoarthritis, Polymyalgia Rheumatic and Fibromyalgia

My  rheumatologist makes me get a bone scan,MRI, and X rays with any new pain.

When I gotPMR ,it was worse because it mimics bone cancer, my head told me it was not, but still I had all the exams and blood work needed.

Get a good specialist and make sure your doctors comunicate .

dreaming

Make sure you get a SED level, this will tell if you have R.A. or O.R.

candie1971

I am scared...I am in so much pain right now. I have pain in my butt bone on the left side..radiates down my left lane, up in my groin, in my abdomen on the left side also and my left hip. Had xray done on hip and pelvis...they say it is arthritis. I cannot walk most of the time. I cannot lift my leg to put on my shoes and socks. The pain is unbearable. I am thinking od going to ER tonight..I need someone else to look at this...I can't imagine arthritis being this painful!! After I try to walk I have to use a cane and drag the leg and foot. what do you think?? I am going out of my mind with this...it has been happening for 3 1/2 weeks now!

mmm5

Hi Candie

I am betting this is the Arimidex but please go have it checked today. YOu need immediate answers and a plan. Arimidex can cause this type of pain and I have not had it since being of Arimidex.

barbe1958

I have had debilitating arthritis for years and I can tell you it DOES hurt! I was always amazed to see little old ladies and men zipping around and there was me on a cane! I was even down to an electric scooter! The arthritis commercials that show the shower tap as having barbed wire on it to define the pain give a wrong impression. It doesn't hurt from the surface down, it hurts from way DEEP down and up! I had a friend with RA and she said it didn't even hurt and yet her toes and knuckles looked so sore. It's the osteoarthritis that is SO painful. RA has to be controlled by very serious drugs. There is nothing that helps the OA except pain meds and antiinflamatories.....sigh.

My best friend is 76, I'm 51. She outruns me every time and thought I was lazy until she got Polymyalgia Rheumatic. I have Fibromyalgia as well as OA so it's a double whammy.

Welcome to my world.

lisa-e

Barbe, joint replacement may be an option for many folks with OA.  I had a total hip replacement and do not have any pain related to that hip. 

Candie, if your hip pain is caused by OA and can't be controlled by other means, I would ask your doctor about hip replacement and a referal to an othopedic surgeon.

candie1971

Thank you Lisa,Barb and mmm5. I appreciate your responses. I didn't go to the ER last night, I felt funny going as it really isn't life or death. I had a hard time sleeping last night, the pain was so bad..couldn't get comfy. In and out of the car is hard too..I can drive, tho. ok, so I will try not to freak out and I have an appt with Orth Dr for begginning of Sept. to see what he says. I just can't believe the pain!!

Thanks and I will be in touch

barbe1958

Lisa-e, I've had aunts have total hip replacements in their early 40's....it's hereditary for me. The docs now adays hate to do the surgery when you're that young (I"m 51 now) as they know they'll have to do it again in later years. I say do it while I'm still healthy enough to heal! I'll do it twice if I have to!

Sheesh! 

candie1971

Barb, now I have been sitting for 1 1/2 hours (I am at work) and I am pain-free. Now I am gonna get up and walk for a few minutes..to the ladies room and all. The pain will come with a vengence..then it will take about 1/2 hour for it to stop once I sit.

lisa-e

Barbe, I had my hip replacement a year ago when I was 55. I understand that I am likely to need a revision at some point if I live long enough; however, the replacement should last about 20 years. That is twenty years of my being able to walk, hike and climb, ie enjoy a working hip joint. Without the hip replacement, I would have been in a wheelchair by now.



According to my othopedic surgeon, hip replacements should be done whenever they are needed, what ever the patient's age. It is a quality of life issue.



Candie, I am glad you are seeing an ortho doc for a consult. It just sucks when you don't want to get up and walk accross the room!

candie1971

Lisa, I tell you, I can't take this pain and if that's what it takes to get rid of this then I will have to do it. As long as I stay seated, I am ok, but I can't live my life like that?

barbe1958

No, you can't Candie. Go to a pain management centre.

candie1971

Barbe, oh, yes, I will check into that. I just pray that this is arthritis and they are not missing mets!! That is what I am afraid of.

Hugs and prayers,'

candie

barbe1958

I know, that's my fear, too Candie! sigh.....

candie1971

Good morning,

well because I am also having pain in abdomen, my PCP is sending me for a pelvic and vaginal ultrasound. I go tomorrow morning. Drinking and holding all that water isn't fun but gosh it could be so much worse. I wanted to wear panty hose today...can't reach the foot to get them on, the pain is so bad! boy I am like a cripple!

[Deleted User]

Candie - Good luck tomorrow...please keep us posted.

candie1971

thanks Laura, I will.

pmunafoapril15

I have been dealing with lower back pain so severe that it hurts all the time and a night. I cannot lie on the left hip all night from an aching pain. My onc is not one to do MRIs everytime I have pain. I have gone to rheumatologist who did several tests..shows no lupus, rheumatoid, etc. He said that the Arimidex I have taken since 2005 could be cause of "joint" pain. Who knows the diff between bone and joint pain? I worry about mets also. I had a slip months ago with sever pain long after and went to "back" doc/surgeon. He took xray and said nothing showed re discs, perhaps soft tissue damage but three months later still hurts. Am 62 and have tell-tale signs of arthritis in hands and feet. But after treatment for BC, after chemo, I still have neuropathy in fingers and toes. The pain is tiring and I am tired of worrying if it is recurrence. My maternal cousin died of brain mestasis; my mother died of ovarian mestasis. So of course, I worry. The diff pain in hard to explain to my loved ones..I even thought fibromyalgia. Anything to explain I'm not nuts so thanks for posting your symptoms. Let's face it if the oncs told us all the side effects of chemo, maybe none of us would use it. Ha! I guess it is what it is.