BONE METS / JOINT PAIN Q & A
Hi Friends:
I have a lot of questions. Some of them might sound silly. But I think we need a thread where Bone Mets questions can be asked and answered by those of you who have been diagnosed with this.
Where did your Bone Mets start? Did you have pain? Does bone cancer ever start in joints?
If anyone has any other questions please ask them here. And please those of you who have answers....please answer. Thank you so much! Love you all! Tami
Comments
-
- single bone met, upper femur
- no pain at all, no symptoms
- bone mets and bone cancer are two completely different things and are treated differently. Bone mets are still breast cancer, not bone cancer.
- theoretically, they can start anywhere but ankles, fingers, toes are less common. Vertebrae, ribs, sternum are more common but that’s not exclusive.
- also, bone mets and bone marrow mets are different.
Tami,
There is an active thread called If you don’t have mets but have questions (or something similar to that) on the stage IV forum. Since it’s active that might be a good place to ask these questions. Bone mets, IMO, are more straightforward than mets to organs, though as with all mets, still complex. Are you worried about something in particular?
0 -
Im Stage IV de novo and I had numerous Mets at diagnosis.
Hip, femur, rib, spine.
I had no pain at all at diagnosis. My hip joint, same side, had bothered me on and off for years but we don't think that was Mets-related. The met was not in the joint.
I frequently complain of joint pain now, hands, knees, hip sometimes - but that is not Mets related, either, as nothing shows up on a scan.
It's probably due to the AIs I am on.
My hip is bothering me right now in fact, and I'm waiting for scan results. We'll see.
American Cancer Society says the spine is the most common site for Mets (from all cancers, not just breast)I don't think that means spine would always be the first site where they develop. We are individuals, every case is unique.
https://www.cancer.org/treatment/understanding-your-diagnosis/advanced-cancer/bone-metastases.html
0 -
olma,
Good point on pain! For many of us joint pain is AI related and if you're older, let's not forget good old arthritis. However, noneof that has anything to do with bone mets and tbh I am thrilled to be getting older 😊
0 -
I have a bone met in T11. No symptoms.
I did have hip pain after my I finished my Stage 1 treatment and because it persisted more than 2 weeks, I was referred for an xray. It turned out to be not related to cancer at all & I was referred to physio (which fixed it after a couple months of prescribed exercises/stretches)
I was told any symptoms that persist for 2weeks or more need a workup to rule out metastases.
0 -
Caryn, yes, I can truly appreciate growing old!
And to be fortunate enough to only have a few aches and pains at this point 🍀
0 -
Jons_girl, are you trying to find a way to distinguish between normal joint/bone pain vs. bone pain from mets?
I don't know about the later stage of bone mets but early on, I don't think that's possible. As the previous posters have pointed out, joint and bone pain is very common from AIs and arthritis and just from aging. And bone mets at it's earliest stage is often painless. From my time on this site, while sometimes mets is discovered because someone has pain and imaging finds mets in that area, what I've seen more often are situations where the area with pain is found to be something like osteoarthritis or bursitis, but then there may be an incidental finding of mets in a different area.
As someone with OA who is also taking an AI, I have bone or joint pain every single day. I wish there was some way to distinguish my 'normal' pain from something that might be serious, but unfortunately there isn't. I monitor my pain and as long as it moves around (different joints at different times) and waxes & wanes, I don't worry about it (or not much, anyway). I did have persistent and worsening hip pain for a period of time and decided that needed to be checked out. My hip x-ray was fine - just degenerative changes - although it did result in an incidental finding/diagnosis completely unrelated to my hip pain, my breast cancer history, my OA or anything else I previously knew about. As we get older, every test raises the possibility of finding something. Oh, and that hip hasn't been hurting lately but now the other one sometimes does.
1 -
I have a single bone met to iliac (hip bone), no pain and my diagnosis of stage IV from the beginning was a total shock partially because of that. My image of a cancer patient was from TV, true for some but not my experience. The only joint pain I’ve had was from tamoxifen. I’ve never properly appreciated estrogen until I had to lose it.
0 -
Wow thank you all so much for your responses. I will respond to each of you in the morning but I wanted to thank you for sharing your experiences with this. 💐thank you.
0 -
Thanks for the replies I think this is very helpful since many of us spend some time too often worrying about joint pain.
0 -
Sorry friends. I meant to respond yesterday. =( I really am thankful for all your responses. You are all amazing women! I will respond to each of you below:
Xbrnxgrl: Thank you for mentioning the other thread. I wanted to specifically start this thread because I was specifically interested in learning more about bone cancer which I thought was the same as bone mets. So I am really glad I asked questions here and I am very thankful you explained that bone mets and bone cancer are two entirely different things. And there is such a thing as bone marrow mets!? Wow ok. I am not sure why I don't think I ever knew all this info! Thank you for explaining this. And you never had pain with your bone met? Interesting. My MO stated to me that bone cancer is usually with pain. So is that true? I realize bone met is different so maybe you don't have pain with bone met and have pain with bone cancer. Am I worried about something? Yes I have been having pain.....consistant pain everytime I walk almost I have pain. I have always been very active! But I am 53 and last year had menopause officially and around same time just started having pains. Joints and hips and have had pain in my clavical. But mostly my hips and my joints. Also my iron binding capacity is very high so I have tons of iron in my blood but my body isn't absorbing it. It is going somewhere. My level isn't drastically low but it is on the lower side and my dr would like to see it be higher level. So my MO is talking about maybe iron infusion. But I am questioning alot. Why am I having pain? I shuffle to the bathroom at night now. I have been tested for RA negative. Is this just menopause or is it something else. Anytime I have pain I think cancer which I realize I shouldn't do that! But unfortunately that is where my brain goes. Sorry for the book response. lol
Olma61: What does de novo mean? Thank you for the link!! So you didn't have pain with your mets either. So I am assuming the mets were found then on scans? I am not on AI's or any hormone blockers and so that is one reason I am wondering why I am having so much pain. I am only 53! I eat a very clean healthy diet and am careful to stay active etc. But still I have the pain. I have had a pelvic MRI like a year ago and it showed a wonky ovary they were worried about how it looked for awhile and one dr wanted me to take my ovary out. It resolved though and my CA125 levels are good now. They were up and down for a bit. I have another ultrasound pelvic and breast in May to recheck and a CA 125 too. Olma please keep us posted on how your scan goes....what results are if you want to share. Hoping all is ok on the scan.
Moth:Thank you for posting. Yeah if this keeps persisting I probably will have a bone scan. My MO said she can order one but I don't think she thinks this is anything to worry about. But it can hurt even turning over in bed at night. Walking to the bathroom at night, etc. Just weird to me.
Beesie: Thank you for that information. Interesting! Yes I am trying to figure out if I should be worried about this or not. It hasn't gone away really. And I am not on AI's. And am only 53. So I guess since I am in good shape I just think I shouldn't have pain like this...maybe I am wrong tho. Ok thank you for sharing your experience too! That is sorta where I am at. I am trying to figure out is this something to be concerned about? Should I have a bone scan or is that a waste of time and money to have that done? Lol. I don't want to be a hypochondriac about every pain I have.
Yeah what you said about getting older and tests finding things is completely correct! Illimae: Thank you for sharing your experience too! This is so interesting to me that all these bone mets have caused no pain. With my MO telling me that bone cancer causes pain....I guess I didn't realize people can have bone mets and that is different than bone cancer. I am not on tamoxifen but I can only imagine my pain if I would be on a AI. (I am post menopause) I think my estrogen has gone down though due to my menopause...? Maybe that is all that is causing my pain. Not sure.
2019what: I agree with you!
Thank you all for your responses! I really appreciate all this information. I am not sure what I am going to do. I did have a breast MRI in Dec. Nothing showed up on that. But they were not looking at bones in that scan that I know of. I haven't ever had a bone scan but not sure I need one. Thank you all for sharing your experiences! Have a wonderful evening!
0 -
jons_girl - hi again. De Novo means “from the beginning" - at the time my breast cancer was diagnosed, it had already spread to my bones. Yes, it was found on a PET Scan, which was ordered because something looked “not right" on the breast MRI that my surgeon did. Yes, I had no pain. My MO seemed surprised but other than the hip pain, nothing else ever bothered me. I was exercising and everything with zero issues.
So, about AIs and joint pain - the reason they cause joint pain and stiffness is because they are reducing the available estrogen in the body. Which is the same state we are in after menopause. Some women who are not on AIs do experience the same kind of joint pain simply because they've gone through menopause. Not diagnosing here, but that's one possible explanation. However, it sound like you're having more severe pain, so it's good to explore every possibility.
Thanks for asking about my scan! My results came in today, and I am still NED (no evidence of active disease) which means treatment is keeping the cancer under control.
I hope you can get a clear diagnosis soon and get some relief from the pain. Keep us posted.
0 -
Johns_girl, hi. My arthritis started giving me a lot of problems in my early 40s, and I didn't hit menopause until my late 50s - and that was surgical, I was still going strong hormonally. I've felt like I'm in the Rotten Joint of the Year Club for about three decades now, with a new one falling apart annually. Scans show degenerative issues in both knees, left ankle, my feet, left hip (replaced that one because it had slipped out of its socket, it was so bad), shoulders, wrists, hands, and all through my spine and neck. My husband plays "guess the joint" when I sit next to him popping and cracking. The neck cracking freaks him out. So regular old osteoarthritis can happen at a relatively young age.
As for bone mets - my aunt was diagnosed with de novo breast cancer, rather advanced. She'd gone to doctors who dismissed her pains as bursitis, and by the time her cancer was found, she was in pretty bad shape pain-wise and spent the last year or so of her life on morphine. But that was 30 years ago, and I think women are diagnosed instead of dismissed now, and treatments have improved dramatically. So I think it would have to be very advanced, untreated mets that would hurt - and that's not likely if you're being seen regularly by an oncologist.
0 -
AliceBastable, my neck cracking freaks me out!
0 -
jonsgirl,
As you can see, pain may be a signal that one has bone mets but it may not be. There is no one way bone mets present.I think you need to let go of what your doc said about bone cancer because that is not the same as bone mets. Bone mets from bc are treated as bc. Treatment for bone cancer is different. All metastases for bc, regardless of where they are, are treated as bc. When the cells are examined by pathologists, they are bc cells even if they’ve taken up residence somewhere else Remember cancer is not one monolithic disease. Breast cancer looks different from lung cancer just as lung cancer looks different from leukemia yet they are all cancers.
0 -
Just wanted to say wahoo! Great news on your scan Olma! NED!
0 -
thank you! I'm definitely celebrating!
0 -
When my first bone met was discovered I had some pain, but nothing super concerning. Just an occasional twinge in my left shoulder that was different. However, in the next two or three months the cancer just exploded throughout my spine, ribs, and skull, and my mets became "innumerable." (I went through two lines of treatment that didn't work for me during that time. Ugh!) Anyway, once that happened the pain became quite noticeable.
I think with bone mets the pain level really depends on where your mets are and how big they are. Better safe than sorry - if you're wondering and the pain persists for more than a couple weeks, it should be checked out. Best wishes to you.
0 -
Olma61: I am sooooo glad to hear about the NED results!! Sorry for my late reply! That is so wonderful to hear! Thank you for explaining what 'de novo' means.Yeah I am not on a AI.....and still having all this pain. So I will ask again at my next MO appt in May. It could just be menopause. But wow I really am noticing a big difference in my joints. And I am only 53. Thank you for your kind words. I hope I get answers too. I am so happy for your NED results. So glad the treatment is working well for you.
Alice: Hello! Thank you for sharing your experience and your aunt's experience with join pain and cancer. I have been pretty active most of my life. And it just feels like all of a sudden I can't walk well without pain. If I sit for very long when I get up I have pain. Just getting older and maybe that is all this is? But wow I didn't picture myself like this in my early 50's.
But you are right maybe this is all it is is menopause related joint/bone issues. I am being followed by a MO. But only just basically bloodwork. No real bone scans. Haven't ever had one other than the dexascan.exbrnxgrl: Yes what you said is true. I have learned that bone mets are very different than bone cancer. I understand that now. I will talk with my MO again in May about this joint pain. It may just be menopause though?
buttonsmach: Thank you for sharing your experience. Wow you have been through alot. Yes you are right I will talk with my MO in May about this again. My bloodwork has been pretty good so there haven't been any red flags for my doctor. She said she can order scans for my bones but she hasn't seen any red flags to order them. But I will talk with her.
Thank you all for your support and kind words. You all are very strong women and I really am sad about what you have all had to go through. I sure appreciate you all for sharing your stories and giving advice. Sending hugs to you all. Have a wonderful evening....
0 -
Sciatica pain on my right side. No back pain nothing out of the ordinary.
Sciatica pain progressed, bloods were always fine inflammation showed, but we always thought it was from my lymphedema arm.
Finally had xray on back (not that it was ever sore) that showed cancer.
Back to my cancer hospital for bone scan which lit up like a christmas tree. Wide spread right up to my scull.
Happy to say first line treatment currently working 29 boxes and counting. Tumor markers were 268 when dx now around the 30 mark🙂
Thats my story! Though every one of us is so different.
Als do make joint pain make you feel like an older woman! I've just turned 43 and feel much much older some days!😏
All the best
0 -
I am really scared. I have been having neck pain for sometime and about a year and a half ago I had a negative x-ray, which only showed arthritis. So my physiatrist who has been treating my neck pain for sometime now wanted me to get new x-rays. I had them yesterday. My neck has been cracking very loudly when I move my head, enough for others to audibly hear it. I also have low back pain which is radiating into my left hip. The low back pain has been going on three weeks now. My doctor, the physiatrist, texted me yesterday to ask me about the x-rays. She wanted to know as soon as I had them done. I texted her that they were complete and she said she would check them. So today I texted her and asked if there was anything concerning. Normally, she would tell me right away what the findings were. Two hours later she told me that we would have to compare them and discuss it at my next appointment which is in three weeks. I started freaking out and sent her another text asking her if she would tell me if it was cancer metastasis. That was two hours ago. She has not responded and I know she read the text immediately after I sent it because she has an iPhone like I do. I am getting more frightened by the minute.
0 -
rocket,
I know this is very difficult but until your physiatrist contacts you there is nothing you can do. Worry and anxiety change nothing and are bad for your health. Comparing imaging is quite helpful as it allows your doc to see changes over time. Trying to read the tea leaves is a very murky and often incorrect way of discerning the future!
0 -
Rocket, bad news travel very fast. If you didn't hear anything from her probably means that she is not that worried and she is taking her time to compare with previous scan. All doctors do this and when they think it is no cancer, the take their time. This has been my experience.
0 -
I would add that bone mets are hard to diagnose on imaging & there's controversy on the best methods to use .. as lytic and sclerotic mets present differently. My MO used two modalities (CT and bone scan) to confirm mine. I wouldn't assume that just because there's a delay in interpreting an xray report that there's a problem - imaging results aren't necessarily obvious right away.
0 -
Thank you all for your responses. I am trying to come down off the ledge. It is just so unusual for this doctor not to respond at all. That is what has me concerned. I also have had spinal pain for weeks that I didn’t mention to any of my doctors. I know that I should have, but I always attribute it to the weather and arthritis. I should add that I have been on Anastrozole for 11 years now.
I just need some good news. Cancer rocked my world 11 years ago and I never want to go through that trauma again.
Thankyou all again!
0 -
I am praying for you tonight! Please keep us posted.
0 -
Rocket, I'm hoping you get good news. I agree with what moth said too - I don't think bone mets are confirmed by xray alone.
0 -
Xray could show further degeneration that the physiatrist may want to consider before treating further or she herself may need different imaging beyond xray (like an MRI) to see what degeneration it is. It doesn't necessarily have to be mets to need an MRI.
Ive only had one xray and that was after a bunch of other imaging, to check how how far the mets had spread in my hip as it didn't look like much on the bone scan. I had no pain in that hip (still don't) and xray confirmed that there was really not much going on in that area other than some light degeneration.
0 -
Thank you all again for talking me off the ledge of intense fear. I obtain the x-ray radiology report from medical records this morning. I am not a doctor or a nurse, and report indicated that I have increasing degenerative changes in my neck. I have three fused vertebrae which were not fused surgically. They fuse due to arthritis. I have chronic neck pain as a result. I think I will take almost anything except for cancer. It’s just one thing that I still have a lot of PTSD about. Thank you dear ladies for understanding and for your prayers I’m so glad I found this thread.
0 -
Traii: Thank you for sharing your story. Wow you have been through alot! I just amazed by all you ladies and your stories thank you for sharing your story with us! I am glad your treatment is working! Sending a hug your way! Blessings!
Rocket: I am glad you got the results. I am assuming you will go over the results soon with your doctor. I hope all is well. Keep us posted. We are here for support. Sending a hug your way. Blessings!
0 -
I will be going to the doctor to discuss the results of the x-ray. My appointment is several weeks away yet. I am also scheduled for a nuclear stress test in a couple of weeks. I am not overly concerned about it. I am not sure there is much they can do for my neck pain. It is ridiculously frustrating. It hurts all the time. Thanks again ladies for letting me share here
0
